Make This Look Awesome...

Opioid Narcotics!!! Why have you forsaken me?!?!?

2012-02-25T14:35:00.002-07:00

I can't take narcotics anymore, and it's not for all the reasons we see in the media. Here I thought it was just a matter of communication and proving myself a model, responsible patient. I could get the narcotics, return to work and get on with my life. The best laid plans of mice and men often go wrong. I got the communication down. I proved myself a model citizen. I got the extended release morphine pills.... and they're worthless!! I can't be on a medication that makes me feel like I have the flu if I decided to sleep in on a Saturday morning.

The problem is if I don't take it at the same time every day---that means weekends, holidays, days with the flu, zombie apocalypse, it doesn't matter... If I don't take the medication at the same time every day, I get withdrawals. I'm on a baby dose compared to what I took back in the day for my migraines. I used to be able to go a few days before I started getting withdrawal symptoms. Not anymore. Now it's hours. If I get food poisoning, stomach flu or a bad migraine where I can't keep a pill in my system, I'm screwed. I'm trying to make my body more reliable. Not less reliable. So now, the payoff is not worth the price. This sucks!!! I refuse to start my mornings shivering in cold sweats. I remember now why I took myself off these damn things as soon as we had fixed the migraines.

It's ironic to me that doctors would keep such a safeguard on opioids. Right now, everyone acts like they're this siren's song, that once you taste of the forbidden fruit, you'll never want to return to the shores of reality... Dear lord, opioids are not that wonderful!!! They don't imbue me with a sense of community and family. They don't fill me with a feeling of purpose. They don't give me a sense of self-esteem. They're a tool that allows me greater access to my body so I can achieve those other things. And unfortunately for me, they're a lousy tool at that.

Last night I dreamt that I was running my own little cafe/bakery. I was dealing with customers, shipping and stocking, arranging the little cupcake treats in the display case. It's an old childhood dream of mine that I sometimes actually dream about. All mundane. And wonderful. Because it's with none of the thoughts that I normally have to have to get through a day. When I dream, I always dream of a not-sick me... a not-in-pain me... a me that isn't suddenly surprised by physical limitations or symptoms. In the dream, when I want to do something, I simply do it.

I woke up to a body that was not my own---it belonged to the symptoms. There was no deciding what to do with my morning. It had already decided for me. I was going to have muscle spasms in my throat. I was going to alternate between feeling like I'm starving and feeling like I wanted to vomit. I would go from boiling hot to freezing cold and back again in moments. I was going to shake. I was going to be irritable and self-centered. I was going to be miserable, until I'd swallowed the right things, did the right stretches, took a shower and all the other things my body demanded, first. I am not going to wake up like this ever again if I can help it.

I may never get back to a place of wellness again. My life might always be complicated health-wise. I'm strong. I can take it. But I'm not about to be making a situation worse. I'm no fool. And it's plain enough that for me, at least, opioid narcotics are not the answer. Not at this time. Not for these reasons. I simply have to find another way. I have to wait for the science to evolve, a new drug or therapy developed, something... I'm going to go back to the pain clinic and let them know that I don't want opioids.

Back to the drawing board.

Would I trade the last 10 years?

2012-02-24T17:50:00.001-07:00

This might be a strange thing to whine about, but I *HATE* being unemployed. Not just for the money, although the money is excellent. I mean just having something to do with eight hours of my day. Spending eight hours of my day doing something that I'm good at and that fills me with a sense of pride sounds like heaven right about now. Being able to wake up, clock into my 9-5, put in my good day's work and going home to spend my time my way would be a dream come true. And I had that dream for a while. Now, I find it hard to know what to do with myself. I never was the type of person who dreamed of doing less with my life.

Some people would envy the heck out of me: I sit around on the government dole and play computer games all day. I could think of nothing more tedious. Work gave me puzzles and problems to solve, things to learn, people to interact with, systems to uncover, and ways of simplifying to discover, and it paid me to do so. It engaged my mind and allowed me to deal with other intelligent professionals on a regular basis. Granted, those dealings weren't always the most joyful, but that was part of the excitement too! Finding the diplomatic path to get the job done... I really loved my work.

Some days I feel so close to being able to go back there, I can smell the Starbucks. Other days I wonder how long is it going to take to get me up on my knees, let alone my feet. After the first month of pain, I was all, "Something's really wrong here." After the first three months I was wondering, "How long can this last?" After six months, I thought, "Okay, screw how long is this going to last, how am I going to eat??" After nine, I was no longer ashamed of applying for welfare. After a year, four... ten... I've forgotten what my life before was like. It's almost lost to the mists of memory. Am I even the same person? Is there any way I could be?

There's an old crone who lives in the back of my head. I like to think she's me, all ALL grown up, wise beyond my imagining. She pipes up with, "Of course not! But you weren't going to be the same you in ten years no matter what. So the real question is, has what you've gained in the last ten years been worth what you otherwise could have been doing with your time?"

And I've got to look... ten years of my career path? Or ten years of this life path? Ouch. There is wisdom I have learned that I would not trade for all the American-held debt in China. I have learned communication skills that I never would have picked up while on the job because there's nothing quite like the communication issues between doctors and patients. There is strength in me now that I wouldn't have gotten otherwise, because I certainly wouldn't have volunteered to go through that much. Dear lord, that's not sane! I know the limits of my body like some mechanics know the limits of a finely crafted engine. I may feel guilty for tapping out for the day, but I never feel I've misjudged.

When I have the energy, I do more without thinking about it. When I don't, I'll notice I've slowed down and take stock to see what's up. My food cravings are also telling, and I follow them almost religiously. (Although a craving for sushi is never justified. There isn't a day I'm alive I won't crave Japanese food.) I have a good track of my mood (or so my therapist tells me). I seem to have gotten the knack of running the machinery of me, regardless of how asplodie it is. That's something I take great pride in, though I know I can be humbled easily at any moment!

So no, I would not trade my last 10 years for the 10 I had planned, much as I still miss it so. I still would like to aim my life in that direction, because I still like eating (and Japanese is expensive!). And although I would like to wake up in the morning and know what to expect of my body. Thank goodness for technology, because I have found ways around being physically unreliable for a 9-5 job. A writer can work at almost any hour, and on the internet, no one needs to know you're still in your bathrobe.

PS - I am still taking donations for my trip to Seattle. I am at 10% Awesome!

When it all feels like consequences...

2012-02-22T14:37:00.001-07:00

A friend of mine recently had hip surgery following a car accident (which, thank the gods, alerted the doctors to the bone cancer...). My friend was complaining that, although he had had a good night's sleep, it meant he had missed his scheduled pain control and now was feeling hideous. Another friend, very well meaning, said, "well, at least you got a good night's sleep!" And in that moment I suddenly found the right words I'd been searching for, for years: "It's hard to celebrate the good stuff, when it has consequences just like bad stuff."

We're taught that consequences follow actions. The laws of cause and effect. We learn, as we grow up, that although our parents may not be around to punish us, some actions have built-in punishment: waiting the last minute trying to pull an all-nighter, going on that weekend bender, flying too close to the sun... And hopefully, we learn, that in order to avoid consequences, we don't do the bad thing in the first place. We balance desires with our values and experience. We delay gratification for "right now" in order to accomplish even greater in the future. Yes, studying doesn't feel good right now... but getting your foot in the door because you have a degree is better than fun. It can mean the difference between eating what you want and eating what you can afford.

So it's really, really difficult when that whole system gets thrown on its head. When getting a good night's sleep isn't rewarded with a day of feeling well-rested, but a day of agonizing pain. To steal from Terry Pratchett: sometimes it isn't about good or bad choices... sometimes it's just about choices. I've found that life becomes really difficult to gauge when there's no way of knowing that what i'm doing is right, but knowing, no mater what, there's something I'm doing wrong, that I'm only going to find out about when it bites me in the @$$. That's a really, really, uncomfortable way to live. And sometimes life is like that. No amount of applauding is going to help. The best medicine, in my experience, is straight-up laughter.

The U.S. military has an "unofficial" set of acronyms for this: SNAFU, TARFU, and FUBAR. Situation Normal: All Fouled Up; Things Are Really Fouled Up; and Fouled Up Beyond All Recognition. The first one is usually said in resignation that things are screwed, and yelling and screaming isn't going to help. The second one is generally said with eyes wide, as things are serious now. The last one is used when so much is going wrong it has just gotten absurd.

That's the point at which we really learn human limitations, and just how amazing it is that we can get anything done. It's the point at which we see humanity for what it is, and how we all take ourselves so seriously, but that things haven't changed. We're all making the same mistakes. We're all still fighting over the same petty things. Shakespeare is still relevant because we haven't grown up a bit in the last 400 years!!! We might need to change the language up a little bit, but we still understand the story... we still understand the feelings... We're all still... human.

When it all feels like consequences, when it's difficult to celebrate the successes, what else is still available? Laughing. Wry, bitter-sweet laughter. Deep, surprising laughter. Not just, "I will acknowledge that that statement is funny" laughter, but genuinely-felt laughter. Laughing at ourselves laughter. (That's the best one because it's the most healing.) The moment we can laugh is the moment we've let go of the anguish. Laughter, more than anything else, can raise morale and breathe life into the dying.

Life is still life, and sometimes it's not fair. Sometimes there is no right way, there's only the way through. Sometimes there is no good answer, there isn't even an answer, only more questions. It's messy, it's shocking, it's hauntingly beautiful, and sometimes downright magical. It's life. And, to quote Mr. Mellencamp, "Life goes on, long after the thrill of living is gone."

Let's laugh and make the best of it.

Dedicated to Brandon Miller

Working towards wellness

2012-02-20T20:39:00.002-07:00

I had my first physical therapy meeting today. I asked my doctor for this because I've been stuck at home pretty exclusively for the last 10 years. I'm not just a couch potato, I'm a couch potato plant. I've been sitting so long I've grown roots. My balance is terrible, and my endurance is shot compared to what I used to be able to do. So they're starting me on pool exercises, and we'll work our way up to more land-based exercises as my endurance increases. And there's one key thing I really like about this whole arrangement: safety.

There's the safety of the warm-pool exercises. Access to this will allow me to work out and not have to deal with the consequences of gravity as much. The resistance of the water will help with building strength. The warmth of the water should reduce my pain flares, and give me greater endurance so I can work out longer.

There's the safety of using a trained medical professional for my rehab. I want to be able to push my limits like any exercise program. The only way I'll ever be able to do more is if I train myself to do more. But testing my limits can be pretty dangerous. I had one adrenal collapse while hiking in the mountains. Not a fun time. I can go too far if I'm not careful. And when I do, the results are catastrophic. So having a health professional guiding me is a huge relief. It means that if I do suddenly collapse, they'll be there and know just what to do. They won't panic. They're professionals.

Additionally, working with a physical therapist means that I know I'll be training my body correctly. Even in the intake exam, where they tested my muscle strength, the therapist had to correct my posture. While lying down, even! Apparently I've gotten into a bad habit of using my pelvis to life my legs instead of using my legs to lift my legs. It's easier that way because my muscles aren't as strong in my legs. But, as I said, it's a bad habit. Using my body like that will give me more back trouble down the road. It was something I started because of my pain, but now that training is working against me. This is a chance to train, doing things right, so I'm not injuring myself later.

It's exciting to be doing so real, tangible work towards my health goals. Going to doctors and taking my medication is responsible, and I'm all for it. But it doesn't seem quite as substantial as actually doing something physically. Exercise feels like work. Work feels like progress. I can already feel my self esteem rising. I'll be able to say, "I've got to go work out," and "oh, that's my day for the gym" like normal, healthy people. I won't be a couch potato plant, rooted to my spot, anymore. It will be glorious.

Among my goals are being able to work in the kitchen to cook a whole meal on a daily basis. That may not sound like much, but it's something I haven't been able to do for a decade. Only this past year did I get up to the point of being able to cook from start to finish. I was so excited, I was posting my finished meals on Facebook for weeks. I cooked an extra portion for my roommate, just because I could. But it's not a regular event. Most of my meals are still microwave. I think when I'm able to cook a Thanksgiving dinner again, I might just frame a photo of it and hang it on my wall.

The Great Potato Soup Experiment of 2011

Success!!

I will get there. We begin tomorrow!

P.S. I am still taking donations for my trip to Seattle for the cure for my Autoimmune Hypophysitis (the nasty pituitary disease). I am at 10% awesome. Thank you!

Donate for my trip to Seattle

2012-02-16T23:29:00.006-07:00

As you may recall, my old endocrinologist has been promoted to head of neuroendocrinology in Seattle. She was the one who saw my disease go into remission and then reappear. There would be no need for me to prove anything to her; she was there. And now she's in a position where she could possible get me the cure for my autoimmune hypophysitis. The only thing standing in my way right now is affording the plane ticket. I was going to rely on my family for this, but the funds just aren't there. So I'm hoping, in a fishes and loaves sort of way, that if I get a little bit from everyone, it won't put anyone in too much of a hardship to help.

I'm trying to raise $449 for the plane ticket and rental car. I have friends I can room with, but transportation is not guaranteed. Many of the folks I know rely on public transport, and I am not healthy enough to do that myself, sadly. I can take care of food as I would have needed to eat that week anyway! ;)

I'm only asking for what I need. I will update the amount I necessary for the trip as donations roll in. When I hit my target goal (100% Awesome), I will remove my donate button.

This is a huge chance to change my life. This is the disease that has the potential to kill me. And I would be paving the way for my unicorn-sister and her treatment as well. Any amount is welcomed. Thank you so much!!!

[Edited to add]
My appointment is April 6th. I'm flying out April 4th and returning April 11th for the cheapest flights.

Prices have changed for the better!! My roommate was able to find me a better deal online for car & airfare, so now I'm only looking for $449!

Management of symptoms = Quantity of life

2012-02-03T19:12:00.000-07:00

Have you ever tried to stop yourself from coughing? It's really difficult. As a symptom, a cough is very urgent, very demanding, very insistent. You're going to cough eventually. It's just a matter of when. Try not to cough for too long and the gag reflex will kick in. Then it's vomiting and coughing. The body will have it's way. Why do I bring this up? Because I want to remind the people who don't have a chronic illness that you *do* know a taste of what it's like to walk in our shoes.

Imagine those symptoms dragging on... and on... and on... Like that lingering cough after a chest cold that just won't go away. Only instead of just the cough, it's the whole cold dragging on. No amount of willpower will make the symptoms go away. Try to force them back and they push back even harder than before. Get burned often enough and eventually, you learn. Something are just-out-of-bounds now. Oh you may be able to indulge every once in a little while, push past the safety zone a bit. But the costs are high, and that's a reminder that your limits are still there. You count your lucky stars for the things that you still can do.

In a situation like that, it's natural to get frustrated. It's natural to become impatient. It's natural to be fed up. It's natural to want to turn our face to the sky and ask, "Why me?!" It's natural to be frightened of what the future holds. I don't have a feeling of safety in my own body. There's always the thought that things are going to change, and not for better. It's happened before, it can happen again. Flares erupt. Bad days are bed days. It's natural to feel at the mercy of invisible, mysterious forces.

It's natural to not want to be alone. I don't trust my body to function. I don't trust my ability to take care of myself. Why? Because I have had things happen to me that were bad enough that I vowed, "Never again." I've been too close to the edge---where if I hadn't've been lucky, I could easily have been dead. It's just safer having someone else around in case of emergencies. In those times another person is a lifeline. In quiet times, at the very least they brings peace of mind.

But what I dream of, when I dare to dream, is a world in which I can manage my symptoms in private and just get on with my life. After that, all other things would be possible: a self-supporting income, expressing myself artistically, participating in life again. A world where I can take care of myself and regain my adult dignity. A world in which I can build towards my future. A world where I can contribute more than just words to my brothers and sisters out there. They're good words, but I know I'm capable of more. This isn't just a world where I have a better quality of life. I'm talking about a world where I have more hours of the day where I am useful---a greater quantity of life.

I actually had a perfect doctor's visit...

2012-01-27T20:15:00.003-07:00

It was amazing. It didn't start off easy. He was suspicious, and I waas trying my best to be open and honest without flinching... I really felt under the microscope. But I was *supposed* to be under the microscope. I was asking for narcotics. Yes, that's right. I had my best doctors visit while searching for pain medication. Yeah, I was surprised too. Like, at the end of the visit, he was willing to go out on a limb for me and make a serious recommendation to my GP. See, he admitted to me that because of my current medication list, he can't treat me. It's just a rule. But we were able to get to a place of mutual respect and understanding where he wasn't just telling me "No." He was telling me no and offering me further options for success. That's a win in my book.

How did it happen? I did exactly as Elizabeth Mizioch-Crawford taught me. I booked an afternoon appointment, close to the end of the day. I took my time. I owned my space and I told my story. He was very polite (almost following my script written in my fantasy!) in his questioning. I told him honestly, giving him all my dirty laundry and everything. And I told it in the form of a story. I told it to him as if I were walking him through the events themselves.

AND IT WORKED!

I have never been this successful this quickly with a doctor before. Oh, sure, I've run into great doctors who gave me the benefit of a doubt, and they were WONDERFUL. But never have I turned a "no" into "possible yes" before. I amazed myself. It was really, really scary at times... being me. Being that real. Being that open and honest. But because of that, and because I told it as a story, by Jove, it worked.

I am truly, truly amazed.

Communication Fail

2012-01-26T20:41:00.002-07:00

So I think I've figured out why so many of us with chronic ailments encounter failure at our communication with doctors. We're stuck between a rock and a hard place. We've been around the block a few times, so we know the medicine world. Doctors are rushed and busy. We're a really complicated case. We've heard the terms, because we've been told them so many times... We know the lingo. And we end up sounding like "I memorized the Merck Manual so I could convince you I'm sick..." Whoops.

So how do we reverse this? How do we get the care we need, and how do I explain this to you so that it can't be used against doctors in a negative way?

I got the answer to both questions from Elizabeth Mizioch-Crawford, through our participation in the But You Don't Look Sick group.

Pamela Curtis
Okay, help me out... I constantly act less sick than I am. But then I end up being whining about it. Any tips on how to keep my big mouth shut? I *want* to not complain. I'm just very bad at it... lol

Elizabeth Mizioch-Crawford
Not sure it's a matter of complaining as it is stating the facts. Part of being able to deal positively with illness (for me anyways) has been to give it a voice. It takes practice but being able to state accurately and in understandable terms has really helped me. It shuts up those that aren't really helpful anyways and allows our true supports to empathize. Try to change your thinking that through positive, verbal expression of your pain/illness then you can acknowledge what you are going through and educate others on your journey. I wish you all the best.

Pamela
OOoo.... if you want to tell me more, Elizabeth, I'm all ears.

Elizabeth
Lol! What would you like to hear? :)

Pamela
How to state my illness in accurate and understandable terms to shut up the unhelpful folk and allow the true supports to empathize... (for starters ;)

Elizabeth
Docs seemed to get it when I would explain my daily living limitations from nerve pain such as not being able to dress myself and not able to walk up stairs. I think it was a matter of stepping back and seeing my illnesses from the eyes of someone who has never been ill. I try to find the simplest terms; "my back feels locked and it feels like a screw is being put in when I bend like that" "I need to take short naps through the day because laying in bed for more than an hour makes my back stiffen so I can't sleep through the night". Things like that.

That's when it hit me: Tell the story. We chronic patients always lament, "If they only knew what I was going through..." We are responsible for telling our story, not just as a list of symptoms, but as an experience. And that's the thing! If you've had the actual experience, there are little details that cannot be learned from any Merck Manual or online site. If they only knew is the point! We have a secret understanding that can't be faked. And doctors have seen enough REAL cases that they will recognize truth when they see it. That's the REAL reason we respect doctors... It's not for that certificate on the wall. It's for the REAL LIFE experience they have. If we tell our experience, they'll match it up against theirs, and as a result, those who are faking or drug seeking will stand out like sore thumbs. Done!

But there's still the rock and the hard place: most doctors don't have TIME. We must demand it. Gently, but we---and I mean doctors and patients and law/policy makers alike---must demand that patients have the time to share their experience, and doctors have the time to listen. We are making some very unrealistic expectations of some very good people by running our health care system on a clock and a bottom line. Everyone is hurting as a result.

Let's slow down. We'll all make fewer mistakes that way, and have fewer communication failures as a result.

Edited to add:

This was such a great comment that I had to add it to this to the post itself. She said it better than me ^_^

Deb aka AbcsOfra
I couldn't agree more that doctors need more time to be with patients. And can we also allow patients to stay with doctors and not have to doctor hop because of insurance changes? Now wouldn't that be lovely. When we have to start all over again it is like being thrown into a pool if ice cold water and having to learn how to swim all over again with a new coach. It stinks!! Yes, more time for each visit and more time available to stay with our choosen doctors and not be forced to change due to insurance changes. With both of these I really believe a better form of understanding would naturally take place.

Pain = Decisions

2012-01-24T20:36:00.001-07:00

I have a riddle for you. There are three frogs on a log. One decides to jump off. How many frogs are left on the log?

Three. Because making a decision and following through on it are two different things.

I had a strange experience today. I got up off the couch without thinking about it. I was up and two steps into where I was going when I suddenly realized I had moved from the couch simply by doing it... No thought at all. No pain at all.

And I realized: I can feel my pain come on the instant I start to move. That unconsciously makes me pause. Then, usually, I'll brace myself for pain, and mentally visualize how I'm going to stand up. I'll first bounce into the couch, using the springs to help lift me. This allows me to push off forward, using my arms and legs to get my weight off the couch. I stay crouched momentarily, throwing myself with enough energy that I almost start to fall, but that momentum then allows me to stand up straight without falling back into the couch. Usually.

This. Is. A. Process.

Today I had a moment where it was without all this thought. I just lifted my body weight from a sitting to standing position and then immediately moved two steps forward... It shocked me. I literally paused, looked back at the couch, and asked myself, "Did I just do that?!" Then my next thought was, "Okay, how crazy is it that this was unusual. Can't most people move without thinking? And it struck me just how much of a process it was for me, and that I'd completely acclimated to it, so much so that it surprised me when I didn't have to.

That is what it means to live with chronic pain. Everything we do requires boat-loads of calculations. Brain fog? Lack of attention? Distracted? Rude? Nope. Try preoccupied...

Why lie?

2012-01-22T15:09:00.002-07:00

I'm not Catholic, but I have a ton of respect for the Jesuits. Not only will these guys admit the contradictions in the Bible, but they'll happily point them out. They'll let you in on all the dirty secrets of Christianity. They'll take all the skeletons out of the closet and put them proudly on display. It was in a Jesuit class that I heard: "I don't care if you bring in your Bible from home, one translation is just as bad as the next." What I find so amazing and what I respect about this is that all those flaws and shortcomings don't shake their faith. They don't get defensive about their religion having flaws. They're not ashamed and they don't try to be perfect. They leave perfection up to God.

I've heard some of my friends proclaim, "I'm never going to take a medicine that they can't tell me how it works!" I'm very happy for them if this turns out to be the case. But I'm a bit more realistic. Medicine has been around a heck of a lot longer than our understanding of how these things worked. We don't understand half the things our bodies do normally let alone when they malfunction. We don't understand how one medication can work for one person, and not for another person. We don't understand why one antibiotic would work on an infection and not on another. A lot of times it's a just a crap shoot.

Right now, there is some sort of obstruction in my ureter causing urine to back up into my kidney. I've already got two large stones (7mm) that they're going to need to break up with ultrasound. But that can't happen until we figure out why my kidney isn't draining properly. It could be a type a kidney stone that doesn't show up on Xray or CT scan. It could be something outside pressing on the tube and not letting things flow properly. It could be something else inside the tube causing blockage. This could be scarring from passing previous kidney stones. I'm going to have a scan with contrast on Wednesday to find out more. I'm praying and hoping it's the other kind of stone. In that case, all I would need is lots of fluids, pain killers, antibiotics and time. If it's another type of blockage it's going to require at least two surgeries to repair the ureter. Leave it alone and it will cause eventual kidney failure and possibly death. Fun.

What disappointed me the worst about all of this, however, was the song and dance the doctor gave me about how he'd never heard of this causing pain and that I was possibly imagining things. And yet, when I go online to do research, I see time and time again that this is a condition that causes severe pain, and that I am completely valid in my experience. I'm not getting this information from daytime TV. I'm getting this information from reputable, scientific sources like Cedars-Sini, the Mayo Clinic and the National Institute of Health. And when all of them say my pain is valid... it destroys my faith in the medical community one more time.

Doctors: You want me to trust you. You want me to treat your learning and knowledge with respect. You want me to put MY LIFE into your hands with a surgery. And then you go an lie to me... Why? What is so awful that you can't tell me the truth? What is so important to hide that you would throw away your professional integrity? What is worth risking our doctor-patient relationship? And what the hell has happened to the medical community that PAIN is denied treatment and blamed on the patient's imagination? Are all doctors supposed to be torturers now? What is going on??? In a profession where trust is paramount, where we patients are coming to you in good faith seeking treatment by your hands... why lie?

But the lies aren't the saddest part. The worst part is just how common it is. I expect my doctors to lie to me. I double-check everything online, I'll talk to other patients, and I always get a second/third/fourth opinion from the other doctors I'm seeing. It's such a breath of fresh air when a doctor really tells me the truth. It immediately wins my loyalty and I'm able to relax. Here is a doctor who is going to give it to me straight. They're not try and put on some flim-flam show about how godlike they are for just studying medicine. They know the world isn't perfect, that medicine isn't perfect, and that imperfection is no reason to give up, cover up, or lie. Like the Jesuits, they didn't let the flaws and shortcoming of medicine sway their faith. As a result, they were able to hold on to mine.

Trephination and trepanation - Ancient migraine treatments

2012-01-16T18:28:00.000-07:00

You may have heard of trephination and trepanation from your history class. They're the ancient arts of removal of parts of the skull and piercing the skull, respectively. The practice dates back at last 7000 years, and it's a way to manage migraines. It actually works. There is even evidence on skulls where the surgery was repeated after the first surgery was healed over and the bone had grown back. It's an extreme surgery to do, to be sure, but that is testament to how awful migraines can be.

The reason trephination and trepanation work is because of what goes on in a migraine. The brain has found a spot on the membrane that encases the brain, and mistakenly decided that it's injured there, even though it isn't. The membrane, also known as the blood-brain barrier, becomes leaky at that spot as the brain sends all sorts of healing chemicals to that area. It's why many migraineurs (people who suffer from migraines) can point to a spot and say, "That's where it hurts the worst." And that's where the ancient surgeons would remove part of the skull or drill a hole. As a result, the brain actually would have a wound to heal, and those chemicals could be used up. That would relieve the pain.

More on migraines...

(If you haven't guessed yet, this roller-coaster weather has got me a bit preoccupied with my migraines. You'll have to forgive my publication slow-down...)

[Repost] How to Be the World's Worst Patient

2012-01-13T14:30:00.001-07:00

This is a hilarious and informative piece I just had to share. "The worst thing you can do is to come into a doctor's appointment with a strong body of knowledge. Your doctor spent eight years in medical school. How dare you do your own research! This makes the doctor think you think you know more than he does. Harming his or her ego is an unforgivable error. Your best bet is to remain completely, totally ignorant and to rely on your distracted physician to take a complete health history, order tests based on their wisdom - never yours, and correctly diagnose you and write a prescription in under five minutes. They have practice quotas to fill, after all."

Read the complete article here: How to Be the World's Worst Patient

Do what is responsible, then...

2012-01-12T10:21:00.000-07:00

- Julien Lennon

I believe in using denial as a tool, sure. But I also require that before that tool is used, I take responsibility. I never use that tool to deny my responsibility or my part in something. That's just being an adult. I will believe that people are basically good, but I'll also lock my car doors and the door to my house even if I'm home. It's one thing to be hopeful. It's quite another to be delusional.

I don't delude my self to the fact that kids like to create mischief and go through unlocked cars. They may also take high-priced items they think they can move on eBay. When I was a kid living in New York, every house on our street got robbed... twice. Except ours: we had a very noisy German Shepherd. Hope for the best---prepare for the worst.

Sometimes that means swallowing a bitter pill of "my part" in a situation. I don't always get things right. I may think I see reality, but I could be reading the signs all wrong. I may be missing some key piece of information that unlocks a mystery and changes my perception of the whole situation.

When I get that information, and I realize I was seeing everything wrong... oof!! That's a blow to the ego. "Aw, crap!! I hoodwinked myself! D@mnit... *sigh*" Then it's time to look at things under this new light and change my behavior to match reality.

I may have used this analogy for acceptance before, but here it is again. It's like when I'm driving in traffic. I may not like that the car in front of me has slammed on its brakes, but I'm going to hit my brakes in response. I accept reality, even though I may not approve. Otherwise, I may crash.

But then after that difficult work of the soul is done, then I can allow my spirit to soar. I can remind myself that each day is an opportunity to do another great thing, share another cool insight, discover some new wonderful media. Life is hard, sure. But it doesn't have to be a drudgery.

I couldn't have wished for better...

2012-01-09T16:51:00.000-07:00

"I couldn't have wished for better!!" I told my roommate in shocked disbelief. "This kind of good luck just doesn't happen to me." I have an appointment on April 6th with my old endocrinologist in Seattle. She was just promoted to the head of neuroendocrinology at one of the hospitals where I used to be a patient. Talk about hitting the lottery! This is the woman who saw my disease go into remission. She was the one who worked for a year to get me to see an neuroendocrinologist in the first place. And now she's the head of the department?! Thank you for your prayers and well wishing, as they obviously have worked.

This blows my mind. When I say I couldn't have wished for this, I mean I really couldn't... not and still like myself in the morning. To make this happen, I would have had to find a way to make someone lose their job, just to put her in their place. I simply wouldn't do such a thing. I wouldn't even be able to pray for such a thing. But it's happened of its own accord anyway, and I am the lucky benefactor. Holy cow...

It's going to be seeing an old friend. I bet she's going to be so proud of all the weight I've lost. She never knew me skinny. She only had the pictures to go on. We even tried to get the weight off with phentermine, an ingredient in the now infamous phen-phen, but it stubbornly stayed. I bet it will be good for her to learn it was the prednisone dose I was on at the time. Oh, and I'll be able to got T3 replacement again because she's up-to-date on information like that. I'm absolutely giddy with excitement.

This is such a relief after dealing with that quack at CU. This isn't a doctor who has to go on someone else's lab results. She was there. She ran the tests herself. She witnessed my transformation first-hand. I don't have to prove anything to her. I don't have to plead my case. She won't doubt me because she's the one who diagnosed me. I'm coming home, in a way.

There are many logistics to think about. I have to get from here to there. I have to stay there. I have to come back home. None of those are simple or easy decisions. My body has some very particular ideas on how it likes to be treated. Being thrust up to 30,000-ft in a pressurized cabin isn't generally on the list. Financial costs are another issue. The plane ticket alone will be at least $200, and that's a lot of money to me these days. I used to be able to spend that on dinner. Not often, but I could do it without it hurting. Nowadays, that's a month's supply of food if I'm careful.

Still... the work in front of me is an opportunity. Yeah, it's scary and looks overwhelming. Travel is a big deal for my body. I have a lot of careful planning to do. I can't just rely on Plan A. I need to set up safety measures in case life decides to do something else. After all, as John Lennon put it, "Life is what happens to you while you're making other plans." I have a lot to think (read: worry) about, but it's so much better than having no options left.

And I couldn't have wished for better. *squee!!*

Why patience is a virtue...

2012-01-08T21:06:00.001-07:00

[Part 3 of a trilogy, Part 1, Part 2]

There's a great greeting card flowing around the internet. Here's a censored version of it. Most people would look at this and laugh for the obvious reason. Everyone understands that we hate waiting. Places to go! Things to do! People to meet! My time is important! Yes, yes. Ha, ha. But hold on a second. When we rush things, is it actually easier for us to be successful? Does going faster actually cause less accidents? Are we able to see things clearly when we only see the briefly? Do we type things out correctly the first time, every time?

You may know this joke: A man is drunk. He's heading towards his car and accidentally drops his keys. So he starts looking for them... a block away under the streetlamp. A stranger, seeing all this asks the man, "Why aren't you searching for your keys where you dropped them?" The drunk answered, "Because the light's better over here..."

It does us no good to always be right. It does no good to surround ourselves only with the safety and security of what is known. We want to repeat our successes and avoid our failures. That's primal too. And it's scary to go into the darkness. It's scary to be unsure. Our autonomic nervous system actually goes into fight or flee mode. We're primed for action, but unable to take any because we don't know what to do. That's a tough spot to be in.

We need patience because success is not a straight line. The path from a to b is unknown. We may have a direction, but we have no idea of what life is going to throw in our way. We may have a goal, but we may have no actual way of getting there. We may have a map, but that's no guarantee the landscape is going to match. And acknowledging those facts, embracing our insecurity, and giving ourselves the time to be cautious are all important.

And we're not training our kids to learn how to have a willingness to be wrong. We're teaching them that there's right and wrong and you always want to be on the side of right. We've associated being right with righteousness. The person who is right should be given the authority. They know what to do. They're right.

This time.

But, as I've mentioned before, success isn't a straight line, and success isn't a destination either. It's not like you become successful and stay successful, never making another mistake again for the rest of your life. We can't hold on to success any more than we can always be right. And yet, these are the expectations and heroes that we parade around. These are the stories of rags to riches that we eat up with a spoon. S/He made it to the top and lived happily ever after. On the flip side, we have the shaming "s/he never really amounted to anything..." and "s/he never really did much with their lives...." We put such enormous pressure on ourselves, and we can be so mean to ourselves when we fall short.

I say let's put away the abuse and self-abuse and let ourselves be okay with our not-knowings. It's okay to be unsure. It's okay to be cautious. It's okay to dip your foot in to see if the bath water is too hot. It's okay to have to take time to figure things out. It's okay to need time to figure things out. In that time, it is appropriate to feel insecure. That is a perfectly reasonable response to not knowing something. It's not bad to realize our own limitations. To be limited is to be human. We give a patience to ourselves and others as an act of acceptance and forgiveness of our limits.

Edited by Brigg Badlwin

No such thing as a human machine...

2012-01-07T17:23:00.004-07:00

[Part 2 of a trilogy, Part 1, Part 3]

We're trained very early on that to be wrong is to be bad, that we made a mistake, when we saw reality wrong, it's because there is something wrong with us. Getting the "right" answer and being able to show how you got the right answer is all important from the time we start school to well after we retire. But the truth is, no one knows what reality is. We're all observing this world with fallible human organs. We want to get things right so badly. We remember our mistakes so easily. This is a primal instinct. Figuring this stuff out is how we survive.

When a situation is new, we can feel overwhelmed. We can feel out of our depth. And we are so rushed in this culture that we never give ourselves time to acclimate. We want to jump into a situation and fix it now! But we're not giving ourselves time to learn what we're working with. We're so enthusiastic to show that we can do it, that we don't pay attention to what's going on around us. We're going so fast in our efforts to be wonderful, that we make simple, catastrophic mistakes. Our history is saturated with this behavior: Katrina, Afghanistan, Iraq (just to name a recent few).

I am insecure about my health problems. They're rare, they're difficult to manage, and they're interfering with my life in a major way. That's scary stuff. It's perfectly reasonable for my doctors to feel insecure too. But they have a culture wherein they always have to get the right answer or it's their @$$ on the line. The stakes are REALLY high for them. They have to have an answer, it has to be the correct one, and it has to make the patient better. When that doesn't happen, they freak out. They're out of their comfort zone of rightness. They "ran into the table" and the first person they're going to "scream" at is the patient. If the patient would just go away, the problem would go away. They never would have to face being wrong.

What a perfectly, self-sabotaging way to approach medicine. In this modern day of machine and perfectly pressed pills with the same microscopic amount... with all our amazing diagnostic technology that can see into the human body in ways we've never imagined... we've forgotten that medicine is an ART. With all these health programs and websites based on wellness, we've forgotten that people aren't one-size-fits-all. As a culture we've forgotten that what's good for your life may be bad for mine, and please mind your own business. We've place this expectation that because we have precision industry, because we have this diagnostic technology, because we've had all this very expensive education, that that somehow makes us immune to mistakes and immune to insecurity about the situation. Why?

Insecurity is okay. It doesn't mean there's anything wrong with us. It means we're in a place of learning. We need not view it as failure: to not know. We need not be afraid of this. That's where discovery lives. That's where wonder and surprise are. We need to not be so concerned with making reality match what's in our mind, and need to concentrate more on matching what's in our mind with reality. That takes humility. That takes vulnerability. That takes a willingness to be wrong. That take willingness to admit: there's no such thing as a human machine.

Edited by Brigg Baldwin

Sometimes insecure is a perfectly valid way to feel...

2012-01-06T21:47:00.003-07:00

[Part 1 of a trilogy, Part 2, Part 3]

We don't like insecurity in this culture. It's a sign of not knowing. And if you don't know, well, how can you tell if you're wrong or right? How do you know what's correct and what's a mistake? How do you know what to think about yourself? Are your efforts good enough? Are you measuring up to the moment? What's the East German judge going to say?!?* Do I have any idea what's going on? Am I even seeing reality?

Have you ever seen a toddler run, without watching where they're going? Invariably they smack their head into some piece of furniture. Then they look at you as if to say, "If only you hadn't been there watching, I wouldn't have hit my head!!!" They are so angry in their pain, so angry that it hurts, so angry that it disrupted the fun they were having just instants ago...

We are all still that toddler inside. When we get sick, when our lives get disrupted by something we did not want, have no power over (besides mitigating the consequences, that is), when it hurts, we get angry. DO. NOT. WANT. It makes us mad that we have to deal with it. We want to escape it. We want a reason why. We can easily fall into blame-the-victim, both towards ourselves and towards each other.

But the truth is, just like that toddler, we can't see it coming. The future is something we anticipate, not something we know. Our incredible capacity to imagine is how we compensate for the fact that we're never really living in the moment. It's actually biologically impossible to live in the moment. It takes "it takes the brain at least a tenth of a second to model visual information." That is, it takes 1/10^th of a second for the reality in front of us to reach the vision center of our brain and tell us what we're looking at. Think about this: you're driving in your car, the world is moving around you, things are happening, and you're watching the road. You look away. You look back. Suddenly you have to slam on your brakes. Did you miss seeing the car in front of you? Yes, quite possibly. That could be entirely true. If the movement happens in that 1/10^th of a second window...

Let's think about that in terms of baseball. "At 85mph, it takes a ball approximately .425 seconds to go from the pitcher’s hand to the hitting zone." That's approximately 4/10^th of a second.

More math, the average human reaction time is 3/4 of a second. That’s .750 seconds [7.5/10^ths of a second]. What does that mean if a player simply reacts to the ball from the time it is released? That’s right, if you are good at math, you figured it out. Go have a seat on the bench, strike three went right on by you before you could even swing. Hitting is timing. A batter must begin his swing at the same time the pitcher begins his motion. There is an old saying, and I am not sure which hitting instructor first said it, "When the pitcher shows you his pocket, you show him yours." In other words, when the pitcher kicks his front leg up to begin his delivery to the plate, the hitter should begin his "cocking" or "pre-swing" motion, preparing the bat for a swing at the ball. If he does not, it is physically impossible to react in time.
Be a Better Hitter

We anticipate the world. All the time. For survival. For sport. But sometimes, when our mind is calculating what that future is going to be, we get it wrong. We don't see the table. We strike out. Something happens that we had no intention of happening. We don't get that job. We don't get into our choice of school. We can't afford to live in that neighborhood anymore. We're sick with a disabling disease. Life happens and throws us off our game.

If we're aware we don't have enough information about how to calculate what the future is going to be, we become anxious, worried, and frantic. Where do I stand? What do I do now? What's going to happen to me? My family? My love... Those can be difficult pills to swallow. But it can also give us a sense of wonder, surprise and magic, like not knowing the end of the story or watching a Penn & Teller magic show:

Why do we run from our insecurity? Shouldn't we acknowledge it? Shouldn't we stop for a moment and go, "Hey, I'm feeling insecure. I wonder what's going on here?". Why do we try to insist, "I'm okay! I'm okay! Everything's alright!" even though we're scared? Why don't we stop and identify what's making us insecure? Insecurity lets us know that we don't have all the information we'd like. It identifies places that we should investigate, rather than avoid. It lets us know where the mystery lies.

*(Cold War Olympics humor)
Edited by Brigg Baldwin

Pain patients mourn the loss of a champion...

2012-01-04T10:13:00.001-07:00

I hadn't heard the news until today. I have lost a hero. You'll have to excuse me, I'm at a loss for words. "All of us are irreplaceable to someone—but few are irreplaceable in the public sphere. Siobhan Reynolds, 50, founder of the Pain Relief Network, who died in a plane crash Christmas Eve, was the exception. She tirelessly, compassionately and at huge financial and emotional cost to herself, worked to debunk myths about opioid treatment of chronic pain that continue to emerge even now.

"The aspiring documentary filmmaker and mother of one was moved to activism by the overwhelming chronic pain suffered by her husband. Further spurred by learning that her son had inherited the same genetic disease, Reynolds was relentless.

"Why, she asked, when opioids can help treat chronic pain, are they frequently only available to the dying—but not if your agony will last years? Why, when addiction to opioids is actually rare, do we treat them as though everyone who takes these drugs is likely to get instantly hooked? And why do we seem to see addiction—even in the dying— as a worse side effect than agony or even death?

"To answer these questions, she educated herself in the intricacies of pharmacology, public policy, medicine and law. A master at simplifying complex stories for the media, Reynolds then used every means at her disposal to bring what she found to public attention."

Read more: http://healthland.time.com/2012/01/03/champion-of-pain-relief-siobhan-reynolds-dead-in-plane-crash/#ixzz1iVg2cCmW

Holidays are something that happen somewhere else

2011-12-31T01:15:00.001-07:00

Dedicated to Lori Patton

I gave up the holidays with my marriage in 2005. It's just all too much. I can barely manage the small "workload" I've set to myself on any given week. Going above and beyond is just not physically possible. It's not that I don't like the holidays. I do. I'd love to be caroling and baking holiday cookies, decorating and planning family meals, and making personalized, holiday gifts. I just can't. I haven't been able to for a very long time. But I've come to a place of peace with it. I don't fight the holidays. I'm not all "Bah! Humbug!" But nor do I let myself get caught up in the moment of the season. The holidays far enough away, I've got plenty of time. Oh, look, aren't the lights nice. Hey it's New Year's already? Sweet! Another year done! And just like that, I'm through. It's still just winter and cold again, and nothing to worry about.

It's easy for me: it's just me and my cat. If I had kids, it would be an entirely different story and frankly, I don't know how some of y'all do it. But for me losing the holidays is not a big loss. The peace with not having the pressure of the holidays is certainly nice. It's just Wednesday. Or whatever day of the week it happens to be. I use the increased time inside to catch up on indoor activities like painting and reading. I let all the festivities and rituals be something that happens to somewhere else. It's not my concern. It's like music from another room. I can enjoy it if I want to listen, or I can ignore it all the same.

I've had to scale back so many of my activities, that I really need to pick and choose what is important and what isn't. If it isn't important, I don't worry about it. It's a celebration any day that I am well enough to be in the kitchen cooking from scratch, whether it be dinner or a batch of cookies. I do not need to exhaust myself trying to match my ability to bake and cook with the timing of a holiday, no matter how old. I rejoice every time that I'm able to take on an extra activity like visiting with friends or having the patience with my hands to make a gift. I don't try and force my hands to work overtime for gift giving. I am not one of Santa's elves. I do my gifting year-round, as my body allows. I take my joy as it comes, not from the calendar.

I could spend every day morning what is not perfect about my life. My I am amazingly blessed. My mind is, arguably, still with me. I am not a prisoner in my body. We're not on the best of terms, my body and I, but the relationship has gotten better in recent years. Life has taken me places I never expected, good and bad, and given me a sense of fulfillment I never thought I'd have so young. I never thought I'd find a reason to celebrate being poor, but some desperate measures have resulted in some surprisingly wonderful breakthroughs. I never though I'd celebrate being crippled, but the wisdom and strength I have had to forge as a result I wouldn't trade for anything.

My "Holy" days are spontaneous and without warning. They are without ritual. They are without tradition. But they are precious still, and I mark their passing. It was that Friday that I was able to stay out and keep pace with my friends in an evening of socializing. It was that Tuesday we were able to meet up for lunch and a quick peek around the local shops. It's any time I'm able to post a picture on Facebook about what I made in the kitchen. It was that day I felt brave enough to risk going to the movies, and didn't need to take any medicine as consequence. It's the couple of days of good planning that got me through a period of pain without it being a catastrophe. These moments, these times, are sacred to me. They are gifts. They are blessings. They are my holidays.

I make sure to breathe in these random moments as though is Christmas morning, as though it's New Year's Eve, as though it's the 4^th of July. I drink up the joy in the moment that I am able to experience it in. I'm mindful of consequences, of course. It's difficult to be successful in my condition and not be mindful of consequences. But I will take my chances where I can get them, as they are so few and far between. And a very merry unbirthday to you too! So it's not so much that my holidays are somewhere else as they are somewhen else and someway else. My holidays don't come in familiar packages at predictable times of the year. They are moments that magically unfold in front of me, that I marvel at in hind-sight, and say, "Did you get a load of that? Wow... wasn't that somethin'! Man. Amazing. I am glad to be alive."

I have a little shop!*

2011-12-29T15:43:00.001-07:00

Here and on the new "Shop" page you will find items to purchase in support of this blog. I don't like running advertisements, and I'd like to stay away from that as long as possible. Instead, I offer you my line of fine "Make This Look Awesome" gear. All these products are through Zazzle, so no need to worry if I'm having a bad day... you'll get your stuff anyway!

Make This Look Awesome Tote - $19.50

Those of us with chronic illness often have a lot of papers to carry. Sometimes to the doctor's office. Sometimes from the doctor's office. This neat little tote is your paper-holding pal.

Make This Look Awesome Tote by makethislookawesome

Make This Look Awesome Hoodie - $44.50

Hoodies are an easy layer of warmth to throw over any outfit. The traditional kangaroo-like pocket on the front is convenient in oh, so many ways. Seriously... you can never invest in too many hoodies.

Make This Look Awesome Hoodie by makethislookawesome

Make This Look Awesome Mug - $16.50

My uncle likes to carry around a coffee cup with him all day. He's so often seen with his coffee cup that his granddaughter has started calling it "his binkie." She'll run after him, "Grandpa! Don't forget your binkie!" He asked that I make him a binkie he could carry in support of me.

Make This Look Awesome Mug by makethislookawesome

Enjoy!!

^*Yes, totally a Doctor Who reference...

You Are Not Your Disease

2011-12-25T14:04:00.001-07:00

If you have a chronic illness, you've probably heard this at least once. "You are not your disease...." It's a trite phrase that psychologist learn in their training on how to deal with people with chronic health symptoms. But it's so condescending. I never introduced myself as, "Hi, I'm Autoimmune Hypophysitis, glad to meet you." I know I'm not my disease. Telling me that isn't doing any good. It makes them feel better because they've done their duty, so to speak. But it's not actually constructive information. Here's what I think they're trying to say: "You do not need to be ashamed of this."

They mistakenly see our griping as a cry for pity. We're not looking for that. We're looking for acknowledgement of hard work done. We're seeking recognition of the struggle we're going through. I mean, saying I'm not my disease is like saying I'm not the rain. Sure! I know that. But I still get wet. It's still miserable to stand in without an umbrella when it's pouring down. I still have to navigate around puddles and jump aside when a car splashes one onto the sidewalk. Managing my disease is hard work! That is why I'm whining.

I am not my disease, but this disease is obnoxious. It stops me from doing what I want to do. It stops me from expressing myself in ways I want to. It stops me from going the activities I want to be involved in. It stops me from spending time with my family and friends. It stops me from being the person I want to be. It stops me from having peaceful sleep. It stops me from working. It has changed me to my core. I am learning to be an entirely new person, one I never dreamed of being in my worst nightmares. That's rough and scary. I never prepared for this. I never thought this possible. I'm winging it and I have no idea if I'm doing a good job or not. And all of that is due to my disease.

Please don't minimize that.

Mistakes can be miracles

2011-12-24T16:12:00.000-07:00

Dedicated to Donna Ricci

I want you to play a word game with me. Look at the word, "mistakes." Break it apart: Mis-takes. Miss takes. I made a miss take. I missed the take on reality. I took something else for reality that was off the mark. But... why do we all believe that this is inherently bad? Why is a mistake a mark of failure? It isn't necessarily. I have made several mistake in the kitchen that turned out *delicious* and I discovered a new fantastic recipe as a result, that I would not have found otherwise had I not erred. Mistakes aren't always bad. They can be beautiful too. They can be miracles.

You know the story... The scientist accidently left the petri dishes out overnight, uncovered, and mold started growing in them. But lo and behold, the mold was killing what the scientist had been cultivating in those dishes. This was a miracle discovery!!! This was the accident that led to the discovery of antibiotics. The scientist was Alexander Fleming.

We're taught a very bad lesson, that we learn very well, early on in school. And that is mistakes are failure, weakness, and to be avoided at all costs. But I'll let you in on a secret. Our school system wasn't designed to help kids learn. It was to train kids for the dull and boring, repetitive tasks that were necessary for factory jobs. That's right. Our school was actually designed to make kids like machines. Our schools are designed to make kids not think. They're designed to make kids perform. And for ideal performance, we ask kids to be perfect.

This is not only unrealistic and undesirable, it's completely unnecessary too. We use machines to do our dull, dirty, and dangerous jobs. If we need the action to be perfect every time, we use a machine to do that. If it's the same circumstance every time and we need that repeated over and over again, we use a machine. If we need the process to be extremely efficient, fast, safe, and so forth, we use a machine. We automate, and we have been automating since before the Roman Empire.

Why are we teaching our kids from an early, early age that getting things wrong is bad? That's something that simply isn't true! We're asking them to be inhuman when we're teaching them wrong is bad. "1200 years before Descartes said his famous thing about "I think therefore I am," this guy, St. Augustine, sat down and wrote: "Fallor ergo sum." I err, therefore I am. ... The miracle of our mind is not that we can see the world as it is. It's that we can see the world how it isn't." (Kathryn Schulz - On Being Wrong)

The miracle of mistakes is that it leads us to a place we weren't aiming on going. Mistakes lead us out of our known world and thrust us into discovery. Mistakes take us to a place we didn't volunteer to go, but not necessarily to a place we wouldn't choose to go if we knew about it. If we always stayed in our safe bubble of "what we know to be true," we'd never make any discoveries! If we never lost our way, we'd never find new places. If we never had accidents, we'd never know what's possible.

T'ain't nothin' in this world good or bad, but thinking makes it so.
We are dangerously in love with this idea of Rightness. We use our idea of Rightness as justification to take terrible actions against other people. "I'm right. You must do things my way." We use it to justify force. We use it to justify discrimination. We use it to justify taking money and property from one person or group and giving it to another person or group. Every human atrocity can be traced back to some jerk who thought only s/he was right and managed to get enough power to start inflicting that "rightness" on others.

Today, I'm trying to embrace my mistakes. I screwed up in the kitchen earlier today. I went to go fix my mistake and than I thought, No... I'm going to let this mistake happen. I'm going to see what's on the other side of me doing it this way today. I don't know that what I'm about to do is bad. So why not try it? The results weren't "fantastic," like some of my kitchen mistakes. But it was still delicious! I gave it a 3 out of 5 stars.

And that's the other thing: when I let go and relax into my mistakes, I don't give myself such a hard time about them. I don't beat myself over the head like I'm a bad person for making the mistake. I worry less about expectations and outcomes. It's exploration and experimentation time. It can be scary, sure! It's new. Scary can be part of that package. But so can thrilling. And it's dangerous to head out into the wilderness... out into Here There Be Dragons land. It reminds me of the Modest Mouse song, Dashboard: Oh it would have been, could have been, worse than you could ever know. But no one got anywhere by sitting at home on the couch.

Sometimes, those mistakes even keep us safe. Mistakes let us know that we've hit out limit. That we need to be careful. That the situation is more than we thought it was. One of the lessons I learned from watching Deadliest Catch is that "13. Not being cut out for the job isn't a bad thing." (me, Everything I needed to know I learned from Baring Sea fisherman..., contains language not suitable for work) Being a baring sea fisherman can kill you. When mistakes are made and recognized early, we may be able to avoid a situation where we'd really be beyond our depth (pun intended).

We need to end our love affair with Rightness. We need to pay more positive attention to Mistakes. If we do this, we will not only learn more, but we will feel better about it while doing it. What inspired this post was I said on my Facebook page that I was heavily medicated and no longer responsible for what I say. A friend I really admire made the comment, "*hits refresh repeatedly* Oh this should be good." Suddenly I felt intimidated! I was in the spotlight! And I thought, *EEP!* I got to mind my P's and Q's! But then I was all, No... that's the whole point, silly. Your mistakes are going to be funny & unusual. Go with it!! This post is dedicated to her.

How to talk to someone who is chronically ill...

2011-12-23T13:27:00.003-07:00

I complain about my health. That makes other people uncomfortable, I know. We're not supposed to talk about our health in this culture. For one, that's something personal. So personal that we even protect it by law with doctor-patient confidentiality. For two, we don't praise weakness in this culture, and admitting health problems is doing exactly that. Or so it seems. But for someone who is chronically ill, it's a little different.

See, if I were you I'd be complaining about my job, or traffic, or stupid people I have to deal with on a regular basis. We are a complaining species. But I don't have a job or a commute and the number of people I deal with on a weekly basis is small. I deal with my health. That's pretty much all I deal with. That and doctors. I'm complaining about what I know.

I'm not looking for sympathy at all. I'm looking for commiseration. I'm looking for a conversation something like this. Let's assume this is my version of "texts from last night".

Me: OMFG... So, last night I was dreaming that I was nauseated. Then I realized that the nausea wasn't part of the dream and woke up so fast... I made it to the bathroom, but GD... My sleep schedule is effing shot now and I feel like hell. FML

You: Yeah, well, you'll have that on a job this size. Do you have anything on your schedule that you have to be at? Is messing up your sleep schedule gonna screw things? Bravo on making it to the bathroom! Clean up is always easier that way. lol

That type of text message would be perfect. It's first says, "That sucks!" in a funny, uplifting way. Next, it addresses the problem, but in a way that focuses on outcomes, rather than the problem itself. I don't know about other people with chronic illnesses, but I don't actually want to dwell on my symptoms. When I verbalize them, I assume you realize what the consequences of having to go through that would be. But I forget, most people stop their whole life with an illness, because they assume it will be over. It's freak-out time when symptoms come up. But no so with me. It's "time to make the donuts," so to speak. So the way the example text ends is a way to acknowledge my achievement, also without dwelling on any of the symptoms.

Sometimes, I'll admit, I seem inconsolable. I'm a sobbing mess. My world is falling apart around my ears (or so I believe), and, "Things are never gonna get better!!!" (Yes, that's an actual quote.) Here's a sample response for those situations.

Me: But thing's aren't going to get better. This disease is degenerative! There's nothing they can do!

You: Alright. You're doomed. But you know what? You're still amazing. You still shine. I still want to be around you. This doesn't diminish who you are. It may make it harder to be who you are and express that... but we're all grateful for what we can get. Any little bit of you is better than nothing, which is what we had before. Hang in there. It may be a downhill slide, but you are still a beautiful soul. So what if it's impossible? Make it look awesome...

Me: But I'm broken! They can't fix this and all I'm doing is getting sicker! I'm a money pit and a a burden to everyone around me!

You: Hold up, there. There were no promises when we were born that we'd be healthy. There were no promises we'd be financially secure. That's life. We're all stumbling through it as best we can. It's okay that your best isn't good enough sometimes. Or even a lot of times. That's okay. Life isn't a race to be won... it's a marathon to be endured. We want to help pick you up. We want to keep you with us. We're happy to pick you up. If we had to stand in line to buy tickets, we would. So don't worry about what it's costs us... You're important enough. We do these things gladly.

When we stumble, help us laugh at it. When things are rough and we complain, admire our spirit and our hard work. When things are impossible, dare us to dream. When we despair about what we have lost, remind us it's not about winning.

Don't be afraid to talk to us, please. We do feel very alone in what we're going through. But we know you're looking at it from the outside. We know you can't share our perspective on this. We're not asking you for that. We're asking you to see us despite that. We're asking you if you can look through or illness and still see the person inside there. We want to know you haven't give up on us even though we feel miserable. We want to know that just because we feel miserable, it doesn't mean we are miserable.

Yes, it is difficult to know what to say. Without a doubt. But I hope I've given you some ideas here. I hope this helps your conversations with folks like us.

Good luck.

The mind is a muscle

2011-12-21T15:27:00.003-07:00

A moment of reflection on this, the shortest day of the year. One of the things I'm quickly learning by doing this blog is that my mind is like a muscle. I need to practice and exercise it if I want to strengthen it. We already know this. It's why we go to school. But I'm talking something much more basic: ripping my awareness away from all that is bad and that scares me and focusing instead on what I have and what I can do. This is more difficult than it sounds. We're programmed to watch for the tiger. If something scares us, we'll stop and fixate on it until we determine we either have to run, or we can go back to what we were doing. It's primal. And when you can't run from it (like a health problem), you can't fix it (like a health problem), it's going to kill you (like a health problem), well that's a m*therf***ing TIGER. AHHHHHHHHH! That's an easy way to justify pulling the covers over my head and never leaving the bed!! But that's not living.

It's difficult to rip my gaze from the tiger. When a symptom comes up, I'll have a panic attack because it's a reminder of how sick I am, overall. Then I'll slip into a pit of self-pity as I mourn my loss of health and wallow in how miserable I feel physically. I can get stuck there. It's never going to get better. It's only going to get worse. These symptoms will come more often until it's all I know and it will consuuuuuuuuuuuuuume me.... This is not an unrealistic thought pattern. I had 4.5 years swallowed up by a soul-destroying migraine that followed that pattern. It's a story that's familiar and believable to me. And it's a great reason to want to give up. But thinking like that does me no good, even if the story is true.

So instead, I gently but sternly tell myself to get my act together. Clean up whatever mess my health collapse created and then go rest because I need and deserve recovery time. And then, as I rest, I do comforting and nurturing talk to myself: "Bad things happen. It's okay. You did very well for what you had to go through. Yes, I know you don't like this. I don't like this either. We're doing what we can to make it better. We're going to the doctor. We're taking our medication. We knew this might happen. We can get through this anyway. Even as you lay here broken, you are strong and powerful. Remember your spirit. Remember what you can give to others. Remember that when you feel better, you will do better."

When I have a health collapse, it can feel like the world is ending. Sometimes, that's actually true. So it's not unreasonable for me to freak out. But I try to limit how much I freak out because, though freaking out feels right, it's not very constructive either. Hey! You're about to die! Alarm! Alarm! Alarm! I only need that alarm to go off once. But my body will continue to throw up that alarm until the physical need is addressed. Sometimes, that physical need can't be addressed, like nerve damage. Hey! The nerves are dying! Pain! Pain! Pain! I can't do anything about my nerves dying. But my body's going to scream about it anyway. It does me no good to join in the chorus. The tune is old and I'm tired of it.

Yes, I'm sick. Yes, I'm losing my eyesight. Yes, I'm losing my ability to control my hands. Yes, the tiger is here. "Rip away your gaze. The tiger is not going away. You are going to get mauled. Expect it. Prepare as much as you can, but know that you will fall short. That's okay. This isn't about winning. This is about staving off the inevitable. Anything you can do despite these circumstances is a win. Be cautious, and just hang in there as long as you can."

I exercise looking at the constructive and the positive. I exercise being a person who conveys a message of strength against all odds. I exercise not getting excited, even though the moment may call for it. I exercise not reacting to my first emotion. I exercise looking at what I can still do. I exercise finding my options. I exercise looking for the funny or the bright side. I do this with grim determination, because it's what helps.

It's hard work to maintain a positive attitude. There's a lot to be upset about. Upset is easy. Calm is difficult. I get a spike of migraine pain, and suddenly, my day is thrown into turmoil. I need to alter my plans, NOW. But, oh! I need to go shopping! But, oh! That will make my head worse! But, oh! I need food and caffeinated beverages to treat the migraine and we're out of everything! Yeah, I can drive myself nuts if I'm not careful.

I need to switch my state of mind. I need to find my calm and hold on to it. That takes practice. Slowing down and thinking things through is difficult when there's alarm bells going off. The tiger is coming for me, and I need to relax, not tense up. It's okay. We have medication. We'll start at Advil and Phenergan and then move up to the big guns if need be. We get a 30 minute window at least, so the medication can kick in. Take the first round, then relax. We have nothing to worry about until the 30 minutes is up. Then we will take the next indicated step. This can be managed. You've done it before. You know what to do. We can get through this. Yes, the tiger is here. It will hurt. But not forever. You're okay. Relax into the pain. It will pass soon enough.

That's work! Slowing down when I'm scared? My body is telling me to run! Relax into the pain? Are you crazy, Lady? There's nothing relaxing about pain! Calming down when someone is screaming at me? That's when I need to arm myself for battle!

Let me tell you something. Feelings aren't facts. Just because a situation may feel a certain way, and it may feel right to act a certain way, doesn't make it true!!! It's a difficult thing to rip ourselves away from, our feelings. But they aren't always good for us. I will acknowledge my feelings. I don't stuff them or deny them or act like they don't exist. I look at them and go, Yeah... that's a reasonable response. But is it the response I want to take in this situation? Does it serve me to behave this way? Is there a better way for me to reach my goals? How do I want to behave here? It reminds me of the line from the MGMT song, "Kids": Control yourself. Take only what you need from it.

I will not be able to do these things unless I practice them. I need to practice my calm in every interaction I have so that in my moments of crisis, I can handle myself. Every time I feel upset, I need to relax, slow down, and think things through. I practice this, not out of obligation, but because I want to be a better person. No one expects me to do this. I'm doing it for myself so I can hold myself in esteem. This is hard stuff. And as a culture, we celebrate drama. It's all over our TVs, in our books and movies... it sells. But I can't be like that. I have to practice reservation and caution because that's what keeps me safe and able. Just like I need to work out the muscles of my body to keep me safe and able, so do I need to work the muscles of my mind. And tomorrow, I will be stronger for it.

“The man with the clear head is the man who frees himself from those fantastic “ideas” and looks life in the face, realizes that everything in it is problematic, and feels himself lost. And this is the simple truth — that to live is to feel oneself lost — he who accepts it has already begun to find himself, to be on firm ground.”
- Ortega y Gasset

Dealing with creditors

2011-12-20T12:10:00.000-07:00

I have a lot of creditors. It's not for material things or credit cards. It's medical debt. It's services I had to accept in the moment to survive, and services for which I simply cannot pay on the other side. It's irresponsible. I get that. I don't like that it's this way, but it's the way it's got to be for now. That bill for the additional lab work? Yeah... I'm not paying that. Okay, send it to collections. Okay, put it on my credit report. Okay, lower my credit score. Okay, blow up my phone. I understand these are the consequences. But the answer is very simple: you can't get blood out of a turnip.

I talked to a very nice young man the other day. He was a creditor. He called me up and was all ready to do his spiel: "Now we'd like to arrange a payment plan because otherwise this is going to affect your credit score..." I always have to restrain myself from giggling at this point. If he knew my credit score, he wouldn't even bother with the threat. My credit score had been in the toilet since my three night hospital stay in 2003. I wouldn't be surprised if it's single digits. I am a walking money pit. I'll own that, no problem.

So I let him talk and then very calmly explained: "Look, I'm sorry. I know this is your job, but I can't pay this. Do whatever you need to do. I'm waiting for someone to sue me and take me bankruptcy court, that way I don't incur the court costs for filing for bankruptcy. I'm disabled and have been since 2002. I got nothin'." I've found that the hostility and gruff quickly falls away when I own the situation and acknowledge it's bad.

There's no point in trying to hide or lie or evade. Yes, I owe the money. If I can repay it someday, I will. Now is not that time. If I were to go before a judge, they'd look at my creditors and say, "Sorry, Charlie... there is nothing to take from her. We can't force her to starve. We can't force her to be without life-sustaining medication. We can't force her into hardship. You're going to have to eat this one." And then for my part, I have to wear the stigma of bankruptcy until such time that I can prove I've gotten my life back together and am responsible again. That's fair.

I already have to balance the cost of vital things like medication and food. I have to be very careful to make sure I can afford things like my Neurontin, because skipping a few days means seizures. I will bother other people to afford my prednisone. That keeps me alive. What I try to do is live within my limited means. Sometimes I screw up. Sometimes my disease screws me up. I am doing the best I can with what I've got. I'm trying to improve on what I've got so that I'm making progress. No more can be asked of me.

And human beings understand that. When a new unknown number pops up on my caller ID, I know what it's for, usually. Sometimes it's a wrong number. Sometimes it's a computer sweepstakes. Mostly, it's bill collectors. I talk to them the first time and let them know the situation so they can have it on file. Then I add their number to a long list of "Ignore" in my phone with the ringer set to mute. I don't ever need to be upset by this. There's no need to panic. There's no need to run. Mia culpa... let's move on.

As I said, the young man was very nice. He quickly changed his tune when I explained the situation. He did very well to explain his part in the process (which includes putting me in the cue for the computer calls at random times). He too was sorry it had to be this way. I told him that I understood he was just doing his job, and that it was all good. We wished each other happy holidays, and that was that. No big deal.

That's how I've learned to deal with creditors.

How I came to learn I was disabled...

2011-12-19T15:02:00.002-07:00

I am outraged by this article: A migraineur entrepreneur: yes, it can be done! This is another example of someone claiming disability and then setting an unrealistic goal of achievement, when by their own admission, they do not display the characteristics of a disability at all. It's the equivalent of saying Kate Moss is an average beauty, and all women can be her. This woman claims she couldn't work a full-time job but then goes on to say she managed 100-hour work weeks. Um... No.

I learned I was disabled when I went into a mandatory unemployment seminar. There, I was told by the leader of the session that if I'm not able and available to work from the hours of 9am until 6pm, I could not count that as a work day. That is, if I was sick in the morning and had to come in late, that would count against me. I went up to the leader and talked to him afterwards. I told him that I'd never been able to do that in my life. He said that I had been improperly collecting unemployment and I would have to pay that back to the state. He also suggested that I talk to VocRehab to see if there was any way to find a job that would work around my regular illnesses.

I went down the hall and I spoke with VocRehab. The lady there was very nice. She asked me, "Well, what can you do when you're sick?" I replied, "Sit in a dark room with no noise and pray for mercy? I get migraines." She pondered that a moment then asked, "When you're at your worst, can you look at a computer screen?" No. "Can you read a book?" No. "Can you answer the phone?" Sometimes. "Can you talk to someone in person?" Sometimes. "Are you in pain right now?" Yes. She looked at me blankly and said, "Yeah, we can't retrain you for any job that could handle that. You need to go talk to Social Security Disability."

I was shocked. I lived in Seattle at the time, and I was part of the IT industry. The culture there, thanks largely in part to Microsoft, was that 10am was a perfectly acceptable time to roll into work. My boss regularly didn't show up until noon. But it was also understood that we worked long hours and a speeds that put 3rd party companies we hired to shame. They had always been willing to work with me and work around my doctor and chiropractor visits, my need to end the work day early or start it late. As long as I put in my 40 hours, they didn't care. So I never knew. I never realized.

And then it all became moot as the migraines went daily. I had, sometimes, a small window of a few hours where I was not in pain. But mostly I was in pain, every day, all the time. Sometimes the pain would even invade my dreams and my sleep. It still does on occasion, like last night. My migraines are triggered by barometric pressure changes. Seattle was a terrible place for me to live. The constant rain six months out of the year was generated by low pressure systems sweeping in from Alaska. The barometric pressure was in constant flux, like a roller coaster: up one day, down the next. That roller coaster would manifest as a migraine.

At first, if I'm lucky, I'll get a visual effect: a little white dot, about the size a a pixel, starts to fly somewhere in my vision. It moves like a fly, but it's tiny, and bright white like it's made of light. In it's wake is a black tail. Then all the lights get brighter. All sounds get louder. It's as if someone is turning up the volume on the world. I can hear my cats walking on carpet and it sounds like children romping in piles of autumn leaves. The squishing of the carpet fibers make a crunching noise. With light, it's like when you walk from indoor lighting out into the afternoon sun on a snow day. The sudden light from the sky and the ground is too much for us. We squint. We recoil like a vampire. The day star is mighty. Headlights in the dark are like that to me. Throw on top of this mix the regular, base-line pain of the migraine... that pain is very much like your worst hangover headache. But add in there random spikes of pain that suddenly strike like an ax blow to the head. Thinking becomes near impossible in those moments. Parts of my language center will shut down so that it's difficult to remember even the simplest words. I'll have to say things like, "make the head hurtiness stop," because I can't recall the word "pain." Or I'll have to make new words like, "Where's the ca-chunka-chunka?" for, "Where's the stapler?" (because that's the noise a stapler makes). Oh, and I won't even go into the associated nausea & its consequences. Yuck.

Working? Not an option. Not even part time. I was offered a paying job with Wego Health to help manage their migraine community. They were fully aware of my migraine disease and were willing to work with me anyway. All I had to do was manage a small blog, log in to the system four hours a week. If I couldn't manage that some weeks, they would understand. I still had to bow out because I was just too unreliable at the time. Every day I was trying to make the pain stop or lessen in any way I could. That was the only thing that mattered. If I could get free of the pain, all things were possible. When I was in the pain, nothing was possible. Even with a prescription for oxycontin, I still had to go to the ER on average of once a month, because the pain got to more than I could deal with at home.

So when someone says: "In the very early days of my blog, I talked about how my headache specialist recommended I not work a full-time job right out of graduate school. My migraine episodes were frequent and severe enough that a 40 hour/week job was not for me---at least that’s what was suggested to me." And then goes on to say, "I spent the first few weeks of business working well over a hundred hours a week..." and, "I was in the shop from 9 until 9 every day..." I call foul. You have got to be effing kidding me. Do you not see what you even wrote??? Normal full time hours are only 40 per week. Not 9am to 9pm every day.

Unreal. And that this story would be promoted as a "you can do it too!" just breaks my heart. Something like that is difficult for the average person, let alone someone who really is debilitated from migraine disease. That they would set the bar that impossibly high from the word go and then claim that it was done by someone who was disabled? I'm only glad she was so boastful of her accomplishments! I would have been feeling pretty miserable if I thought I should have been able to do that too.

Real dreams and accomplishments are possible in disability, but not what this lady is talking about. When I am able to do the same, I will let you know how I got there. But in the meantime, caveat emptor---let the buyer beware. Not everyone out there is giving you the real deal. Whenever anyone tries to tell you, "you too can...", take a look at how they themselves did it and see if it's reasonable. Look at their actions, not their words.

My hair is on fire. I'm going to go put it out now.

Special thanks to Brigg Baldwin for editing.

Articles that restore my faith in humanity...

2011-12-18T15:03:00.000-07:00

I am often faced with fear of repercussion for speaking my mind, here or anywhere else. It's easy to judge. It's easy to follow the party line. It's safer. It's the nail that stands up that gets hammered down. A quick Google search by any one of my doctors, and I could quickly be seen as a "problem patient" before the word go. I could easily be branded a rabble-rouser... a trouble-maker. Discrimination is rampant and has very real consequences on my access to care, let alone the quality of that care. But when others speak out too, I take heart. I'm not the only one standing up and pointing out the emperor has no clothes. Here are some choice articles from doctors and law enforcement about how prohibition is harming us all.

From, Legalizing marijuana: Police officers speak out:

[Once] again, the inbox contained a much greater number of pro-legalization comments than those supporting continued prohibition. Here’s what I got from MacKenzie Allen, a retired King County (Wash.) sheriff’s deputy who was also formerly with Los Angeles Sheriff’s Office.

“I think the first thing with which we all must come to grips is the fact that drug use can never, will never be done away with. Humans have been intoxicating themselves (as have some lower orders of animals) throughout history. We will never “arrest” our way out of this. The drug problem is a health and education issue, no less so than alcohol and tobacco. We’ve been fighting the “War on Drugs” for more than 40 years. It has cost a trillion dollars and thousands of terminated and/or ruined lives with nothing to show for it but more drugs, cheaper drugs, higher quality drugs, more corruption and infinitely more violence. We need to legalize, regulate and strictly control all drugs. Continuing on our present course is insanity.”

From the first part in a series, Tales From the Trenches in the War on Pain, comes this strong supporter of pain relief:

Although I practice child, adolescent, adult, and forensic neuropsychiatry, the majority of my clinical practice is in the field of pain management, and I am a strong supporter of using opioids for the treatment of chronic noncancer pain. I have come to this position after approximately 11 years of face-to-face patient interaction, along with ongoing intensive review of the medical and scientific literature dealing with opioids, and the other forms of analgesic medication, as well as the neuroscience behind chronic pain disorders.

For several years now, and especially over the past several months, there has been an ongoing barrage of news media attention focusing on the fact that overdose deaths due to prescription opioids have reached “dangerous” or “alarming” levels of epidemic proportions. In response to these statistics has come an almost mob-like crusade to track down and punish incompetent, unethical, “pill mill” physicians and their practices, which is justified and one would think this could be easily attainable. Inexplicably, these objectives do not seem to be that easy to accomplish. Why?

At the same time, there also seems to be a push to punish and/or eliminate the pain physician who by some mysterious standard is considered to be over-prescribing pain medications, and/or prescribing medications in “extraordinary” or inconceivable combinations. Of course, these assertions fly in the face of science, and the experiences of the untold myriad of patients who literally have new, functional lives, less troubled by the specter of chronic debilitating pain. These patients still have pain and they always will suffer from it; however, with the right combination of medications — including and especially opioid medications — they once more can experience lives that contain a modicum of tranquility.

As stated above, I am a neuropsychiatrist. I am certain that I see great medical benefits bestowed upon the vast majority of my patients with chronic pain who are prescribed opioid analgesics. They and their families tell me that this is so, and I believe with an objective eye that I see the benefits as well.

From Chronic Pain in America is a National Disgrace, we learn that:

“Federal and state drug abuse prevention laws, regulations, and enforcement practices have been considered impediments to effective pain management….” Among other barriers, they say “Twenty-nine percent of primary care physicians and 16 percent of pain specialists report they prescribe opioids less often than they think appropriate because of concerns about regulatory repercussions.”

The report observes that, “Ironically, while many people with pain have difficulty obtaining opioid medications, nonmedical users appear to obtain them far too easily.” However, the panel also states in italics for emphasis that “the majority of people with pain use their prescription drugs properly, are not a source of misuse, and should not be stigmatized or denied access because of the misdeeds or carelessness of others.”

(Emphasis mine.)

And one of the most hopeful pieces of information I've seen, from Myth-Representations of Opioids & Their Risks is:

Forest Tennant, MD, has assembled an extensive array of documented cases in patients with chronic pain, ranging in age from 30 to 83 years, who have responded well to and thrived on opioid analgesic therapy for from 10 to 35 years. He observed relatively few complications of the therapy, and those were easily managed.

(Emphasis mine.)

Here we have officials with good standing in the community who are laying that at risk to stand up for what they see is right. That warms my heart to no end. They have so much more to lose than I do. In this video from Freedom Watch, and the first article linked here, we learn that there are professional law enforcement individuals losing their livelihood because they said something in favor of legalization.

There are doctors being pushed out of their practice. There are patients who are suffering. There are non-violent citizens made criminals because of putting something in their body. There are people of good standing being marginalized for speaking out. But there are those still willing to stand, still willing to say, "This is wrong..."

I thank them for it.

Pain is torture

2011-12-16T14:02:00.000-07:00

I may get myself in trouble for speaking out on this. It's going to be difficult to explain. It's about my relationship with my pain. It's about my relationship with narcotics. It's about my own fears. It's about how I don't know to talk to people about this stuff. *I* know I'm not an addict. *I* know my pain is real. I know there are dangers, but can't you see I'm already in really scary territory? The landscape is pain. The only question is: how much?

I'm a tough girl, but when my pain gets to a certain point, I know there is nothing I can do that will make it better. I know once it gets to that level it can sit there for months. It did this past year. I was stuck in bed for all of last spring. I started this blog to keep myself from going crazy from pain. I was so miserable, and I had to turn my thinking around somehow. So I forced myself to find the bright side and teach others how to do the same. I promised myself that I had to write positive, constructive, cooperative, empowering posts... Because I had to learn how to be that in my life. I had to hang on... somehow. I was trying to survive torture by my own body. I knew it would pass once summer hit and the dryness returned to the Front Range. I just had to make it through. The key to walking through hell is: don't stop.

Obviously, I made it through. But that's not entirely true. All of me didn't make it through. Each time, it's a little more innocence lost, a little more bitterness gained. I lose more confidence that life can get better. I lose faith that anyone in authority cares. I'm more shy. I'm more likely to keep you at arms length while turning on the charm. I'm trying to hide that I've become an Ice Queen. I don't mean to be guarded. I just know eventually I'm going to lose my $#!+, and I need to learn first if you can handle that. I need to know that I've earned your friendship so that I won't lose you when I lose ahold of me.

The pain I have to deal with scares me and rightly so. I can handle epic levels of pain and still function. But my pain can go beyond my ability to cope. There's that place where there is nothing but pain. It's hard to even have a sense of self because everything is pain. The pain is so big, it swallows all of existence. It's complete helplessness. THAT is what scares me about the pain: being put in a position where it would be difficult for me to save myself from a burning building. Being in pain for so long that it would be difficult for me to have the motivation to save myself from a burning building. You can't have experienced this level of pain or length of pain without wishing for death. It's just natural: passive suicidal ideation. I'm not going to kill myself, but I'm not going to stop the process should it begin naturally. Death does not look like a bad option when dealing with that kind of pain.

The problem is, the desperation of drug-seeking can look EXACTLY like the desperation of pain-avoiding.

It has been a struggle to get the medical community to agree to the point of medicating me properly. I continue to try to get proper treatment, and by that I mean that which makes me more functional, healthier, more reliable, more responsible. I see me able to take care of business because of those pills. I'm not looking to avoid reality. I'm looking to rejoin it. I want to beg of them: "Please let me have them!" But desperation, however valid, looks ugly. So I'm patient. I go through the proper channels. I try to earn care by building a relationship based on full disclosure and responsible behavior. There is no other option. But even that doesn't seem to work. Even when it's on a scan and the blood comes back in my urine, I get the snippy comment: "Well... here's what you came for..." in regards to the narcotics.

Yes, I came in for that. But legitimately. Honestly. For realsie. What do I have to do to be treated with some dignity? Yes, it is bad enough to require that drug. I'm sorry that it is. I'm sorry that I'm bothering you. I'm sorry that I have to be in this state. I'm sorry I'm powerless to overcome it. I'm sorry I can't think it away. I'm sorry I can't "positive attitude" or "clean living" it away. I'm sorry a few laps in the gym won't make it go away. I'm sorry my best isn't good enough anymore. It used to be. I remember it. I'm trying to get back there. But it's a struggle. And each time I have to endure another flare without relief, I lose hope in the fight. Yes, I covet those little pills. But not for the same reasons as an addict.

Are narcotics dangerous? Absolutely. So is prednisone. So is Neurontin. So is Advil. I'm on all of these. When any of these chemicals are used responsibly, they serve a purpose and they help. The help instead of harm. Or, at best they help more than they harm. Do I need narcotics? Depends on what level of functionality you think I deserve. If you think that my limiting my activity to 1,700 steps a day (by my step counter) is good enough, then no, I don't deserve narcotics. Do you think I deserve to be reliable enough physically so that I can work full time? Then yes, I deserve narcotics. Will taking narcotics make me an addict? Not according to the FDA.

I have to believe that it's possible for me to get pain control. I have to believe there is going to be some doctor out there willing to stand up for me and say, "Yes, give this woman pain control. We know her condition is crippling. She needs this. It is her right to have it. She can be trusted and believed. She deserves this care. I give my word as a physician that we know her pain to be real." I have to trust that this is just a "hurry up and wait" time. I have to trust that there is a light at the end of the tunnel even if I can't see it. I have to believe that. Otherwise I panic that there's no way out, no end. Those thoughts are anathema. I cannot let them in my head.

The pain is torture. Not just physical, but mental and emotional. If it were some useful pain, that would be one thing. But this is the pain of nerves dying. This is the pain of a nervous system disease we don't have the science to control yet. This is pain we have no other way to control.

Mercy, please!

Medical PTSD

2011-12-14T14:21:00.001-07:00

It was my brother, an OIF Veteran, who recognized my behavior pattern as PTSD. "Pam..." he said to me very gently, "you react to things just like I do." It was if the clouds parted and suddenly everything became clear. I had PTSD from my medical experiences. I've gone into details with my counselors and one close friend who also understands PTSD first-hand, and that has helped a lot. Each of us has it from a different source, but if you change the words around, the situations are the same. The feelings are the same. The panic about doing things that could potentially help you... Being so overwhelmed by something so simple that you freeze and shut down. Wanting to run and not knowing where to run to so just vibrating in place. Yeah... it's real. It's crippling. It's a disease. Right now, I need to face having an MRI, and I'm terrified.

I'm not claustrophobic. Nothing that straightforward. It's not the medical procedure itself. I'm actually worried that the results will be negative. They're always negative. But that's not unusual for my disease. From what I've read this disease only presents on a scan about 50% of the time. I'm worried that this is going to be used against me for the purposes of denying me care. "You're just crazy. You need to come off your medication and you'll be fine." That's what the last doctors said. That was based off of test results that every other doctor has looked at and said, "No, that's an abnormal response." But they're not the doctors taking care of me for this...

I was told so long for a child that I wasn't sick. That I just needed to try harder. Then I get really sick and find out, "You should be in a coma. I don't know how you're up and walking around!" Well, this isn't far off from normal for me, doc. This isn't that bad. What do you mean I'm a death's door?

It was tested by three different labs. One was a cardiologist. One was the Navy. One was an endocrinologist. This was over a 6 month period. I was later retested in Everett and Seattle. I was retested in St. Louis. I was retested here. All of that should have meant something. But it didn't and she wan't listening to me when I told her I was getting sicker without the medication.

Now it's an MRI and I'm betting that it's going to come back clean, and these new endocrinologists are going to start singing the other doctor's tune: you're fine. You're just delusional. None of those symptoms ever happened. All of those previous doctors didn't know what they were doing. Stop bothering us, kid. You're not that sick...

Really? I landed in the ER with a blood pressure of 80/40 from vomiting and that was just what... Magic? That's not an adrenal crash? I just don't know how to vomit properly? Please enlighten me so that I may do these things the right way and not waste your time.

But I can't say any of that, now, can I? The easiest thing a doctor can say is, "No." That's the shortest complete sentence in the English language, by the way. No. No, we don't think you have this disease. No, we're not going to give you access to treatment. No, we don't have access to the antibody test that would show your disease. No, we have nothing left for you. Whatever it is you have going on? Not our problem. Go away.

And then what do I do? Do I go back to my old doctors who diagnosed me? They're in Seattle and I'm in Denver. How do I accomplish this? Can I even muster the strength to try to see this through? Do I give up on this side of it for a while and instead concentrate on the small fiber neuropathy?

Oh, and that 50% chance it may actually show on my MRI? That feels more like 0.000005% of a chance. I though the abnormal blood tests would be enough, but apparently not. So now I don't know what it will take, and that's terrifying. I thought I had a leg to stand on, but the ground gave way beneath my feet.

Well, here goes. Off to the appointment and we'll see what happens on the other side.

Self-pity is the enemy!!!

2011-12-13T14:12:00.002-07:00

I admit, I do love to wallow in some self-pity sometimes. It feels sooooooo good to feel sorry for myself. "Look at that miserable lump. See how worthless she is? Why, I'm surprised she can even wake up in the morning... She'll never amount to anything. Look how frail she is. What a waste of human life." Anything I've done before? Doesn't matter... That was luck. I've secretly been faking it this whole time and no one was the wiser. I never was an all-powerful wizard. I was just a gal in a funny hat. I'm going to sit and pout about how I never get anything that I really want and that's just proof how miserable I am. My life is hard because that's the best I deserve. I should be glad it's not worse now and when it does get worse, "Well... then you'll really know how awful you are." I cannot tell you how dangerous this type of thinking is.

I have two good options here. The first is pretty straightforward. If I'm being a lump because it's a bad health day, that's a free pass. And NO ONE, not even myself, gets to talk nasty to the sick person. There is no negotiating with a disease. (Melody Beattie, I believe.) And if there's no way to budge the disease, what use is harassing the person held captive by the disease? So option one: free pass.

Option two: do something, anything constructive. If it's not option one, it's a reasonable (I won't say good) health day. I tell the voice(s) to STFD, STFU; I'm not hearing it. I'm going to do something constructive and then they can eat crow. Really easy for option two? Take a shower. It doesn't matter if I have to sit in the tub to get clean. I will get clean. I will have done something productive, and something to take care of myself, in one event. One constructive event leads to another: clean hair means hair care. Means making myself look good in the mirror. Means brushing my teeth and putting on a little make-up, which can change sick-looking into sexy-dusky-eyes instantly. I have done something productive. I am not a lump. I am clean and look appropriate to leave the house. That's something.

The thing with the shower is I can go on auto-pilot. The water on my skin stimulates my nervous system, which is a physical difference to whatever was going on before. Then, I can't take a shower without washing my hair, because that just feels yucky and weird. Pretty soon, it's not so hard to be responsible and wash the rest of me (which also feels better than just getting soaked). Then I can relax a little while and be proud of those small steps. "I can handle this. It's okay. I can try a little more." And I just do little by little until I've finished the routine. When I come out sparkly clean on the other side, and I can see that in the mirror, I can actually hold my head up a little more.

I'll do one small constructive task, even if it's just put three dirty dishes in the dishwasher. I'll straighten up some small area. If I'm feeling really adventurous, I might even do a load of laundry. But that's a big commitment on days like these. If at all possible, I'll get out of the house to run an errand. That may seem like something really big, but getting out from the same four walls, doing something that I've done a thousand times like driving the car, that doesn't have to be so big. It's actually even better if I have to drive a far distance---more than 30 minutes each way. Then I can just have me and the road, the scenery, and upbeat music on the stereo for a while. No decisions. I'm just getting there.

I break things down to the next indicated step. I don't worry about anything but the step in front of me. Twenty minutes from now doesn't exist. What's right here? What's right now? I've arrived at my destination? Okay, which store was I coming here for? Go to that one. What was I here to get? Get it. Am I set to return home? Okay, get a bottle of water because you're thirsty, first. Now ready? Okay, go home, triumphant. Deed well done. Reward yourself with some Facebook games and then we'll see if we can't get more done later. But don't worry about that until later.

Then I check in with the previous nasty voices. Their mouths are too full of crow to bother me much more today.

Nose pressed to the glass for pain relief

2011-12-12T05:13:00.001-07:00

Artwork © Damien Goidich, used with permission

I hate pain. Not just for the sake of hating pain, but for how anxious it makes me. I deal with pain on a daily basis, but my condition now is far better than it was during the 4.5 year migraine. So when my body decides it's time for me to be in that level of pain again (thank you, kidney stones) I get nervous. This is life-stopping, house-bound levels of pain. Even with pain pills a sudden spike in pain can cause me to yelp. The spikes come without warning. Suddenly a dull 2 of pain shoots to a 7. It startles me. Then I get anxious waiting for the next spike. I try to stay calm, but I know it's coming. When it does the world stops. Then it goes away and I can come back. My heart races and I try to relax, knowing that if I brace myself, that only makes it worse.

I try not to think about when this is going to end. That only leads me to question if it will end. It's a known complication of my pituitary disease. The pituitaries affects the adrenal glands, the adrenal glands affect the kidneys. There are enough kidney stones in both my kidneys that this will be a repeat performance. They started when I was 17 and for a while there I got them like clockwork ever 3 years in the spring. They hadn't bothered me for a while there. Now they're back in force.

The anxiety comes from not knowing if I can manage the pain. That's my BIGGEST fear: that I will be in pain, and they won't want to give me the medication that can take care of it. They'll think I'm exaggerating, drug-seeking, hysterical, crazy, criminal... That's what I have to face every time I petition a doctor to deal with my pain.

The situation with my kidney stone almost went really badly. One of the nurses though it was cute how politely I asked for more pain pills. He then shared that at the nurses' station. The other nurses immediately got scared and started whispering. The nurse then told them that he didn't suspect me of anything because I still had pain medication left over from my first doctor's visit ten days ago. I was just following protocol that if it didn't get better by a certain date, I should go in for a CT scan. But just because he thought I was cute, I was almost branded a junkie. I'm just lucky my pain tolerance is so high that I don't need much medication. Otherwise that situation could have gone a lot worse.

The kidney stones remind me where my pain has been, and where it could be again. It reminds me I'm still terribly vulnerable, still terribly frail. "I can hurt you any time I want and there's nothing you can do about it." Talk about an abusive relationship! I'm drinking water like a mad woman and pissing like a race horse. I've swollen up ten pounds because of the prednisone. My kidney stones are calcium oxalate, so I already avoided those in food sources, but I'm loathe to give up chocolate and dairy. (It's good news for my bone density, however.) I live in constant fear of what my body is going to do to me next!

"You'll get through this... it won't be this bad forever..." Sure, but someday, it might be that bad forever. It was before, for years. Not everyone dies peacefully in their sleep. And even though there is end-of-life "comfort care," the doctors will sure let you suffer in agony for a long time before they let that be an option.

Ironically, I've been more productive with the kidney stones than before. The pills I have for my kidneys also takes care of the pain I have from my nerves. I'm drawing, I'm painting, I was able to help one friend with his resume and another with his college essays. I've been able to do more writing. I can rely on my hands to not torture me. The pain pills give me freedom.

I moved across the country TWICE to find a location where my pain was tolerable enough that I would be able to muster through without pain pills. Not because I wanted to. Because I had to. No one would give me access to medication that gave me pain control, and I wasn't going to break the law. The sad thing is, it's easier to get these drugs from the street. Drug dealers don't require CT scans and urine exams. Only problem is, one 5mg percocet---roughly 4 hours of pain relief, if your drug tolerance is low enough---meant four years in jail for one of my dad's clients. Their life is ruined now. That will haunt them forever. After being a felon, you lose certain rights. They are a second-class citizen now, literally. All for four hours. On the other hand, my migraine pills are $36 a piece and insurance only covered 6 a month when I needed 24. The non-narcotic pain pills are $27 each and I'm to take 3 a day. Narcotics are $4 for a month's supply, but trying to get a prescription... fugetaboutit.

I knew the humidity and barometric pressure changes made my pain worse. I hated giving up the doctors in Seattle that had taken care of my other issues so well, but the pain issue was just too overwhelming, physically and economically. So I moved to an arid climate at elevation so the change in pressure isn't as severe when it rolls through. The move helped significantly. Mind you, that doesn't mean I'm functional where I am now. It means the difference between being able to get out of bed or not, which is totally worth it. I can walk to the bathroom with out screaming. I can treat my migraines with ibuprofen instead of that expensive medication. I have my bed-ridden days, but they're not as frequent out here. It's thanks to my father that moving was an option. Other people aren't as lucky.

I want to be able to work. I have that capacity if I have pain control. I have the desire, the skills and the value as an employee to get work, even in this economy. If I had a body I could count on, I could do that. If I knew that I could get up in the morning, take a pill and not have to worry about some attack during the day, I could be NEAR-NORMAL. This isn't about feeling high. This is about feeling good enough to take care of business. This is about being productive, instead of being a lump on the couch counting off the minutes until it's over. This is about getting OFF Social Security Disability and being a contributing member of society again. Would I rather not have to take anything to be functional? Absolutely. But that's not realistic.

I know my doctor's hands are tied. I know that it could mean his/her license & livelihood just because the numbers look bad. I'm not worth that risk. Doctors don't go into business to be harassed by the government. No one wants that. It's easier to just let me, and others like me suffer. I don't blame them for that at all. They're doing the best they can. They're under ENORMOUS pressure. And I know it has to break their heart. That's why so many like me are simply ignored and told not to make follow up appointments. "We have nothing left for you..." is what they say. They do have something left for me, but they're not allowed give it. It's all the same in the end.

So each time I have to take another pill for this pain, I know that's pain relief in the future that I'm losing. I know I need the pain relief now: the kidney pain stops me completely. But I'd like to be able to stretch this medication out as long as possible. I know that's wrong. But each pill is another 4 hours of relief from my daily nerve pain. Each pill is 4 hours of solid work I could get done. Each pill is another flare that I don't have to suffer through in silence. I horde them as much as possible, knowing that's not what I'm supposed to do, but the fear of future pain is too much. I know more pain is coming. I want to have something to take care of it when it does. So if the pain isn't too bad now, I'll suffer through it. I keep the pills for when the pain is incapacitating. If the pain interferes with me walking to the bathroom, then it's time for a pill. Because, I've been to the ER with flair pain and migraine pain, and they don't give out medication for that. They have to see it on a scan. They have to see blood in the urine. Otherwise you're hysterical, drug-seeking, and screwed for relief.

I'm very blessed to have the support I do. But it's also hard knowing that one simple pill, and I wouldn't need the charity. One simple prescription, and I could take care of myself. I could get out from behind this computer screen, off this couch, and out in the world. If I knew I had a regular monthly prescription, I'd be back working full time in the IT industry. I could tell a potential employer, "yes, you can rely on me..."

Someday, I hope....

[Repost] Teen wins award for new targeted cancer treatment

2011-12-08T23:57:00.000-07:00

This is just too cool not to share! For her design of a cancer-fighting technique that targets tumors and leaves healthy tissue intact, Angela Zhang, of Cupertino, has won a best-of-the-best national science competition and a $100,000 scholarship. She is all of 17 years old.

Zhang, a senior at Monta Vista High School in Cupertino, won the grand prize in the Siemens Competition in Math, Science and Technology, which funds and recognizes outstanding achievement. She designed a gold-iron oxide nanoparticle to deliver chemotherapy. It's like sending in a cellphone-carrying ninja to assassinate cancer stem cells and report back while in action.

"She showed great creativity and initiative in designing a nanoparticle system that can be triggered to release drugs at the site of the tumor while also allowing for non-invasive imaging. Her work is an important step in developing new approaches to the therapeutic targeting of tumors via nanotechnology," competition judge Tejal Desai, a professor at UC San Francisco, said in a statement.

...Zhang devised her experiment to target tumors, instead of blasting the body with chemicals, which also destroy healthy cells and cause side effects. Harnessing cutting-edge research into nanotechnology, she injected tumor cells into mice -- "I'm sorry, that must sound horrible" -- let them grow and then injected a nanoparticle carrying the cancer-fighting drug salinomycin.
Tracking the particle with an infrared laser, she found that the tumors diminished.

Complete story at 17-year-old Cupertino student wins Siemens Competition and $100,000

Better care comes through humility

2011-12-07T23:58:00.001-07:00

This is one of the most frightening statements from a doctor I've ever heard: "If we weren't this arrogant, we couldn't do our job." That is just baffling to me. When have you ever heard, "humility goes before the fall..."? That's just not how it works. I understand that what doctors do is scary and taxing. It's difficult to know where to draw emotional boundaries. The landscape is fraught with danger and certain risks must be taken. That takes courage, true. But courage can be present with humility. There doesn't need to be the god-like attitude of "I know...." It's arrogance that doesn't let us see mistakes, even as we're making them. Arrogance doesn't listen. Arrogance instructs: "Who are you to tell me that I'm wrong?" But I've never known any degree, any amount of schooling to make a person immune from making mistakes. That just doesn't happen. Even a doctor can misplace their house keys.

Doctors are said to be some of the worst patients, and it's largely to do with that arrogance. As one doctor put it: "I didn’t tell the doctors all of my symptoms and the events surrounding them. Without even thinking about it, I only told them what I thought was relevant. In fact, a common mistake we doctors make is getting too attached to the first diagnosis we think of, and then failing to ask about other symptoms, other clues.” (Doctor's 'Worst Ever' Headache, and Learning the Patient Story) He was lucky in that they were able to reach the right diagnosis anyway, but how quickly could they have been thrown off track? "You know, most doctors are taught that if a patient says "the worst headache of my life," then it's a subarachnoid hemorrhage until proven otherwise. That means a bleed in the brain, usually caused by a ruptured aneurysm. But I knew something like that couldn't happen to me. And anyway, while I suppose technically this could be the worst headache of my life, it really wasn't that bad. I mean, technically everyone has had the worst headache of their life, right?" This doctor's "knowing" could have cost him his life.

Another doctor describes her experience in missing her son's farsightedness: "It’s really easy to get sure of yourself as a doctor, especially when you’ve been doing it for a while—and especially when you have lots of patients to see. It’s easy to say: I know this. I’ve seen this before; I know what to do. Been there, done that. Usually, it works out. But sometimes, it can make us miss things we should see. ...We tend to think of humility as an optional virtue. Humble people are admirable and all that, but we think of humility as something that can get in the way of excellence and achievement." (It’s only through humility that we can achieve great things) But that couldn't be farther from the truth. It's only when we believe that we don't know everything that we are willing to investigate. In her arrogance over the situation, she even started to think her son was acting badly on purpose instead of inquiring about a possible cause.

Arrogance places an immediate wall in doctor-patient communication. "Most patients still believe that physicians still provide what the ethics of medicine requires us to: “consideration, compassion and benevolence for our patients”. They come to the doctor with the expectation that they will get to tell their story and be heard. That they will enter into a discussion with their doctor about the risks and benefits of certain tests, therapies and alternatives. That their physician will help them, as a patient, make their own best decision for themselves and be comfortable making that decision. ...Unfortunately the healthcare experience for many is quite the opposite. The doctor gives a patient an order that is expected to be followed. Patients that don’t follow these orders are branded “non-compliant” and often excused from the practice." (Find a physician, not a general) Instead of cooperating with the patient and working to find better solutions that work for both parties, it becomes a lose-lose situation for everyone.

The power lies with doctors. "Conventional wisdom [says] that the key to fixing health care begins and ends with changing patient behavior. If only we could get patients to be more compliant, if only patients would do what I tell them, blah, blah, blah. ...If you were to believe the admonitions of the NIH, AHRQ, hospitals, pharma and every WebMD-look alike, you would think that patients these days would be more involved in their visit... asking questions, sharing information and making decisions. But as most physicians will attest... most patients don’t have much to say in the exam room anyway. And the longer they have to wait before being seen, the less patients are likely to bring up the few questions they wanted to ask. This is a huge problem." (The Fastest Way To Disempower, De-Activate, and Disengage Any Patient)

Allowing arrogance allows a culture of abuse to exist. "A nurse I know, attempting to clarify an order, was told, “When you have ‘M.D.’ after your name, then you can talk to me.” A doctor dismissed another’s complaint by simply saying, “I’m important.”" (http://www.nytimes.com/2011/05/08/opinion/08Brown.html?_r=1) Far more than just inappropriate behavior in the workplace, this arrogance has real impact on patients' well-being. "Recent studies suggest that such behavior contributes to medical mistakes, preventable complications and even death. "It is the health care equivalent of road rage," said Peter Angood, chief patient safety officer at the Joint Commission, the nation's leading independent hospital accreditation agency. A survey of health care workers at 102 nonprofit hospitals from 2004 to 2007 found that 67 percent of respondents said they thought there was a link between disruptive behavior and medical mistakes, and 18 percent said they knew of a mistake that occurred because of an obnoxious doctor. ...Another survey by the Institute for Safe Medication Practices, a nonprofit organization, found that 40 percent of hospital staff members reported having been so intimidated by a doctor that they did not share their concerns about orders for medication that appeared to be incorrect. As a result, 7 percent said they contributed to a medication error." (Doctors behaving badly) All of that could have been prevented with just a slight attitude adjustment.

Additionally, not admitting to mistakes or trying to cover things up after the fact only makes it worse. "University of Illinois law professor Jennifer Robbennolt has done a series of studies that show apologies can help resolve legal disputes in cases ranging from medical malpractice and divorce and custody to disputed dismissals and personal injury. “Conventional wisdom has been to avoid apologies because they amount to an admission of guilt that can be damaging to defendants in court,” says Robbennolt, who surveyed more than 550 people about their reaction to apologies offered during settlement negotiations in a hypothetical injury case. “But the studies suggest apologies can actually play a positive role in settling legal cases. ...The apology fulfills some of the goals that triggered the suit, such as a need for respect to assign responsibility and to get a sense that what happened won’t happen again. So receiving an apology can reduce financial aspirations and make it possible for parties to enter into discussions about settlement.”" (Sometimes, an apology can deter a lawsuit)

Admitting mistakes, rather than running from them, is even good business. "After health care providers began admitting mistakes, apologizing and offering compensation, the monthly rate for new claims fell from just over seven per 100,000 patient encounters to 4.52 per 100,000, or 36 percent. The average monthly rate of malpractice lawsuits filed against the hospital fell by more than half, from 2.13 per 100,000 patient encounters to 0.75 per 100,000. The median time it took to resolve claims also dropped by several months, while the mean costs for liability, including compensating patients and paying attorneys, fell by about 60 percent. The average cost for lawsuits that were filed decreased, from nearly $406,000 to $228,000." When Doctors Admit Mistakes, Fewer Malpractice Suits Result, Study Says.

Conversely, when arrogance is tolerated, the consequences can be staggering. "In Anonymous Parents and Deceased Five-year-Old Girl v. Anonymous Obstetrician and Anonymous Hospital, the plaintiffs alleged their infant developed cerebral palsy after a difficult labor and delivery. Deposition testimony of the labor and delivery nurses indicated they were concerned about the lack of progress of the mother’s labor, but they were reluctant to voice those concerns to the obstetrician because of the doctor’s well-known tendency to respond negatively to such nursing input. This North Carolina case settled for $1.2 million." (Laska, L. (Editor) “Hypoxic brain damage to infant”, Medical Malpractice Verdicts, Settlements, and Experts, pg. 34 March 2003.)

Arrogance isn't just bad for patients, it's bad for doctors too. "[A] cultural expectation of medicine is that providers don’t talk about our lack of knowing everything in every situation. We don’t admit our humanness, our capability of making a mistake. We don’t want to seem weak in front of our peers. So we isolate ourselves, and this is never more evident than when we feel we have made a mistake. Instead of getting the necessary support from our colleagues, we keep quiet and go about our business as though nothing has happened. By doing so, we are shutting down emotionally and not allowing healing to take place." (The culture of medicine needs to change) How can anyone learn from, or heal from, making a mistake if they can never admit it? An opportunity for growth and improvement is turned into one of shame and secrecy.

We all know pride goes before the fall, yet somehow we all still fall prey to it. One reason for this may be simply because it's more comfortable. "It’s much harder to go into things realizing that every day, every moment, every child or patient is new. Going into everything with a clear eye, mind, and heart is so much more work—and means acknowledging that there is so much we don’t know. In fact, it means focusing on what we don’t know—and who wants to do that?" (It’s only through humility that we can achieve great things) Believing that we know what's going on, whether we truly do or not, feels more confident, more empowered, more capable. The trouble is, feelings aren't facts. We can feel totally right when we're absolutely dead wrong (sadly, no pun intended).

I met another unicorn!!!

2011-12-05T20:19:00.001-07:00

I say we're unicorns because we're the case that doctors learn about in school, but are never supposed to see in their practice. I finally have talked to another person who has my disease!! She's a lovely woman from Kentucky with that slight southern drawl that puts you immediately at ease. We talked for a few hours comparing notes and symptoms, sharing horror stories and difficulties. And above all, we shared our fighting spirit. Neither of us wants to settle for a marginal quality of life. We want to know about our disease in order to conquer it. We don't need to be what we once were, but we know we can be better than this.

Our pattern of disease is very similar, as is our current list of complaints. We've both run into the same sort of stigma in the health community, and similar apathy from health professionals towards our disease. It was like I suddenly had a sister who I was able to turn to and validate, "yup, our parents are off their rocker on this one...". I learned that my experience was not unique, and therefore not my fault.

Now that I know this, I have a whole new crop of questions. Why aren't doctors more interested in our case? Why go into medicine if not to delve into these mysteries? I feel left out in the wilderness because of what seems to be a reluctance to leave the well-lit safety of "what we know." Our symptoms get managed at the absolute bare minimum, but we're never actually given a quality of life. Why is that? Our doctors, wonderful though they may be, shy away from acknowledging the chronic pain and resulting fatigue. (I suspect the War on Drugs has a lot to do with that.) I was absolutely shocked when I finally got a diagnosis of small fiber neuropathy, because that meant an acknowledgement of my pain. And I was able to pass along the name of that diagnosis to my new friend. We're going to keep in touch to see what sort of progress we can make: her in Kentucky, me in Colorado.

One good thing I learned was that going to a specialty clinic like The Cleveland Clinic wouldn't help me. She'd already been and they really had nothing new for her. They were more interested in her doctor, who was able to diagnose her, than they were in her. It was as I suspected: a lot of great marketing, but really the same health care opportunities (or lack thereof) beneath. I dodged a bullet, thanks to her exploration.

I think the most important thing I learned though was that she was just as frustrated as I. She too was driven to find her own answers. She has the same level of dissatisfaction that I do. We both believe there's a more aggressive way to treat us that would give us a better quality of life. We hate that we can't make planes on Monday for Friday, and know we're going to be okay once Friday arrives. We know that pain management exists. We just don't understand why we're being denied access to it. We have a disease that can be verified with blood tests. It's not like there's nothing else wrong with us. Why is it so difficult to believe we have chronic pain as well? Why is it so difficult to understand that some days are worse than others, and flares are unpredictable? Why is it so hard to believe that we really are trying to be more active in life, and aren't just looking for some fix?

There are two conclusions I come to: either they can't/don't care, or they can/do care but it doesn't matter---there are outside forces at work. This is what upsets me most about our health care system. It seems like there is so much that goes on behind the scenes that we don't get to know about but has an affect on our care anyway. The doctors are making their decisions based on what they see, but they rarely explain what it is they're concerned about. I know I would only need a baby dose, 2.5mg, of oxycontin twice a day to handle my regular level of pain. I know that for my flares, I could need as much as 20mg, at worst. That's less than I was on for my chronic migraines. At that time I was on 60mg, three times a day, with a free pass to the ER for as much dilaudid as I wanted. My pain isn't that bad now. I don't need that high a dose or a note for the ER, like before. But still there's this absolute reluctance.

There's also a reluctance by our doctors to prescribe additional medications, even though we are still suffering symptoms. I know I did better when I was taking additional T3 supplements for my thyroid. I had to move, so I lost that doctor. Since then, I keep getting this song and dance that, "because it's not proven..." they don't want to try it. Well, I've been on it before and I felt better. I performed better throughout my day. I was healthier. Isn't that proof enough? But getting a doctor to reach that conclusion is like pulling teeth. This reluctance makes much less sense to me, since we're not even talking about abusive substances. So what's going on there? I don't know that we'll ever get to know.

Even though it's not all good news, it's still a huge relief to know I'm not alone anymore. These problems that I've encountered are not unique. My symptoms are not unique (we both turn ash grey with a bad migraine!). I have validation. I have confirmation. I have a sister-in-arms in this battle against our disease. I feel recharged and ready to give my all again. I'm not just fighting for me. I'm fighting for her too, and she's fighting for me. Together, we can make better progress than we could have alone.

Christmas came early this year ^_^
(Published with permission)

Price tag of pain

2011-12-05T14:21:00.001-07:00

"Everything has a price tag of pain," is a saying I like. The idea is that even if a situation is bad, we'll put up with it until we've reached out limit. That's our price tag of pain for that situation. It begs the question, "How much you gonna suffer before you decided to change things?" Often for me it's a mix of procrastination and down-right stubbornness. I can't tell you how many years I struggled with taking my medication on a schedule just because I did not want to have to take the stuff at all. I was a little kid throwing a temper-tantrum. Sure, acting properly felt better. But I didn't want to face it. Taking the pills was admitting my illness was real: that I'm broken. That was the hardest pill to swallow of all.

Thankfully, the consequences of my inaction were swift. Within a few hours of not taking my meds, I would feel terrible. The obvious thing to do was to take my pills. Within 30-45 minutes, I would feel better. It still took years to get disciplined enough to take them right when I woke up. It's so easily a part of my morning routine. Just one more step: swallow these, then brush your teeth. No biggie. But it is. I have medications now that can be seen as recreational drugs. I don't like taking them either. I'll wait for the pain to kick in before I medicate. That's actually not the right way to do things. It's bad for the nervous system to go on that roller-coaster ride. I resist anyway.

The answer, of course, is to pull up my Big Girl pants and deal. Since I'm acting like a child, I'll talk to myself as though I'm a child: "Now, Pamela... you know you don't feel good now, and that you're going to feel worse later if you don't take this. I'm sorry they can't all taste good like your vitamin. But you're strong, and you can make it look effortless... if you want to. Be strong now and stick to a schedule. I know you can do this. Let's take care of it together, and then we'll both feel better." (I'd like to thank my counselor, Carol Peters for teaching me how to do this kind of constructive dialogue with myself.) When I can approach the situation with firm kindness, I'm more successful at accomplishing it. I'm not perfect at it. This morning, I woke up very resistant. But I'm good enough. I took my medication before the price tag of pain kicked in too much.

Each time I do the right thing before that price tag comes into effect, I pat myself on the back. Sometimes literally. It doesn't matter that it's my own hand doing the pat. It feels good, so I use that as a reward to keep my spirits up. I'm on a pill schedule of every 4 hours, and that's no fun to keep track of. So I use a Facebook game as a timer. The crops come in every 4 hours, so I play my game and take my pills. A spoonful of sugar, so they say.... I put water bottles around the house on doctor's orders to stay more hydrated. Each time I pass a room with a water bottle, I have to stop and take 4 gulps of water. It may be silly, but it works. The goal is stable health, and I will do what it takes to get there.

I am willful. That sometimes works for me, and sometimes against me. I need to change my behavior in a nurturing so that it doesn't seem like a burden to do these things. I need to reward myself because, in truth, this is a burden I don't like. I need to acknowledge my efforts so that I'm more likely to put forth the effort in the future. Then I don't procrastinate as much and I'm able to feel more accomplished, building my self-esteem.

"Perfection is the enemy of good enough," so the Russian proverb goes. When I am feeling resistant, I can turn my attitude around in gentle, loving way. I'm already feeling bad, so getting angry at myself doesn't help the situation. I can take care of myself in a way that works for me. I don't have to pay the price tag of pain today if I don't want to.

Pain is not a criminal activity

2011-12-04T15:53:00.003-07:00

I don't like being in pain, for the obvious reasons. But there are emotional reasons I don't like being in pain, as well. Pain makes me vulnerable. It makes me feel helpless and powerless. And, because of my past, it can feel like punishment for some unknown wrong. There are feelings of guilt, too, that I am weakened like this. My father raised me to be incredibly independent. I could change the tire on a car before I could legally drive. Asking for help is difficult for me. I despise being a burden. And when it's an issue about pain, I know I'm getting myself into a situation where I may be labeled a drug-seeker and denied care. It's happened before. The potential is frightening. I know I'm telling the truth, but there's no way for them to know that, unless they can see it on a scan.

I've been to the ER about 3 times for flank pain. I knew by the attitudes of the doctors and nurses, they believed I was a woman who just couldn't handle her PMS. There was no blood in my urine. No sign of a kidney stone. Because of cost-cutting measures, scans aren't used as frequently. This is probably my fourth kidney stone, I have more sitting in both kidneys, and tonight was the first time they verified using a CT scan. Up until this point, I was dismissed as a hysterical woman (politely, though). Heck, I was starting to think I was a hysterical woman and just needed to tough it out more. But I couldn't, and yes, there really was something wrong, thank you very much. I joke that I want on my tombstone: "I told you I was sick." Because even this time I had no blood in my urine.

There needs to be the opportunity for more trust between patients and doctors. I know I'm not an addict, but there's not way to see that on a scan. And we're putting doctors careers on the line if they make a mistake. How is that fair? They're trained in the arts of healing. Why on earth are we making them responsible for the behavior of their patients? That's like blaming my car salesman for my car accident. It's silly. Right now we're asking out doctors to be cops. This isn't fair. That sets up doctors to be suspicious and makes patients defensive. Doctors worry about losing their livelihood. Patients fear having to endure soul-crushing, life-stopping pain. We need to start treating addiction like a disease and not a criminal activity. As long as no one can come forward about their addiction because of fear of punishment, it's going to stay in the shadows, festering.

I'm always terrified that something I say, something I do is going to make them think I'm a junkie out to pull a fast one. I'm already vulnerable, weak and frightened by my pain. I don't need to be terrified about every little thing I say on top of that. I've been trying to get my peripheral neuropathy diagnosed for years, but it wasn't until I lost the feeling of "sharp" and "cold" on my feet that anyone started listening. In the meantime, I suffered.

The so-called "safe guards" don't help either. When a mistake arises, even an honest one, the patient is the first suspect. Here's a common example of how a simple mistake can impact an entire life:

The worst part to me was that it was as though it was no big deal to them to inconvenience me, and I felt that my word that I'm constantly wearing my pain patch means nothing if the test doesn't reflect that. How can I prove to them this is true? It's simply my word against the test, right?

When I went in for my retest I decided to ask a nurse to look at my back and verify that I was in fact wearing the patch. She declined to do so, but was receptive to my concerns and very understanding. She instructed the person who processes the urine tests to look into the paperwork a bit deeper, which I appreciated. Low and behold, they'd submitted my test to be compared to a different medication than the one I actually take, which is why the test didn't find any evidence of the medication in my urine. It was looking for something I don't take.

Identifying the mistake was a big relief, but why did I have to be the one to bring up that possibility? If I hadn't they'd have submitted the test the exact same way and I'd still be under scrutiny and feel like they consider me a criminal and liar. Even worse I'd be worried they might decide not to treat me anymore.
Pain Management Drug Testing: Demoralizing Mistrust - Diana Lee

Is addiction a bad thing? Yes. But is it a criminal thing? Wouldn't it be more productive to treat it like a disease? Isn't that what we try to do with rehab centers? Why have the threat of prison there? Why would anyone want to come forward and say, "I'm an addict, I need help..." when doing so could get you locked up?

Making drug use a criminal activity is counter-productive. It harms patients who have to defend their pain. It hurts doctors who have to defend their medical decisions. It denies addicts a safe path to recovery. It costs and obscene amount of money for terrible results. One nurse, who would like to remain anonymous, said that even in her office, whenever a pain patient called in for their monthly refill, everyone in the office rolled their eyes, "it's the junkie calling for their monthly fix..." they all thought. But the staff never had that attitude towards diabetics calling in for their monthly insulin refill. Being an honest pain patient carries a stigma. We're discriminated against. We're punished for being in pain.

We need to end the War on Drugs and decriminalize drug use. We need to bring back the rehab clinics we lost after 1992. It needs to be a disease covered by health insurance. We need to bring back family programs for the support of the family of the addict, and have these covered by insurance as well. We need to be honest that relapse is just as normal with asthmatics, diabetics, heart patients, and addicts, and not give up when a relapse happens. When an addict can honestly walk forward and say, "I need a fix," and get it, then when I come forward and say, "I'm in pain," they know I'm telling the truth. I know it goes against almost every fiber in my being to allow an addict to just engage in that activity. But the truth is judging these people does no good for anyone. We must embrace this problem rather than run from it. We need to be forgiving. Most addicts outgrow use on their own. For the rest, there is treatment and management of the disease. We are sophisticated enough as a culture to handle this.

I had a successful ER visit this time. I got the right treatment. I didn't have to suffer. But there have been long stretches of time where I did suffer. I don't ever want to go through that again. Neither should anyone else have to. I ask this for everyone suffering. Let it begin with you. Write your representative. Let them know that you would like to see legislation that would decriminalize drug use. Ask them to end the War on Drugs. Ask them to do this for everyone's sake. Site the CATO article or any other source you find worthy. (One group I particularly like is Law Enforcement Against Prohibition.) Raise your voice. Be heard. We can change this. And then pain won't be suspected as a criminal activity.

Thank you

New neuroendocrinologist is good!!!

2011-12-01T16:13:00.002-07:00

The new neuroendocrinologist is good!!! She's a fellow, and even brought in her supervisor, and neither had any doubt about my diagnosis. There is even a test for the antibody that they know about, but it's only made in Israel. Still, they're going to see if they can get a hold of it. Meanwhile, they want me on my medication, but we're going to switch to hydrocortisone to see if I tolerate that better than the prednisone. They're going to do research on azathioprine to see if I can try it safely. Man, I was really scared there for a while. But now it really looks like Colorado is the right place for me. Whew!!! ^_^

[Edited to add]
Unfortunately, this did not remain true. The new neuroendocrinologist started singing the old neuroendocrinologists' tune. However, my old endocrinologist who witnessed my disease go into full remission and return, got promoted to the head of neuroendocrinology at Swedish Hospital in Seattle. The journey continues.

What Is A Migraine?

2011-11-30T00:52:00.003-07:00

More than just a headache, migraine is a chronic illness that affects over 30 million Americans annually; roughly 10% of the population. There have been great advancements in migraine management in the last 20 years, and an ever increasing awareness about migraines in general. But there is still an alarming amount of misinformation, myth, and misunderstanding out there, even among medical professionals. Migraine sufferers, or migraineurs, often find themselves at the mercy of people who don’t understand (or worse, don’t believe in) their condition or its seriousness.

New studies^[1] show that neurological changes are responsible for starting a migraine. This is a huge breakthrough, because as far back as the 17^th century it was believed that changes is blood flow were responsible for generation of migraine and the resulting neurological effects, not the other way around. This outdated theory is known as the vascular^[a] theory of migraine generation. Most doctors and nurses currently practicing were taught the vascular theory of migraines. Much of the documentation made available to the public still explains migraines using the vascular theory, and much of the documentation on the neurological basis of migraines is restricted to scientific articles and medical journals. We now know that neurological changes are behind all the mechanisms of migraine, from aura to vasodilation^[b] to pain. Though there are still many discoveries to be made, we are now pointed in the right direction to make these discoveries.

We now know the brain of a migraineur is different than that of other people. “Exposed to repeated sounds or images, the neuron responses in the cortex of the brain [of a normal person] usually decline over time, but in migraineurs, such cortical activity fails to decline. In fact, in some, the electrical activity even increased.”^[2]. The sensitivity that migraineurs experience to normal sights, sounds, smells, and other stimuli is as if their brains have turned up the volume on the world. Instead of tuning out, as most people’s brains normally do, migraineurs’ brains can’t help but stay tuned in.

Moreover, Marina de Tommaso from the University of Bari, Italy found that even between attacks, migraineurs experience pain differently. Using a laser to heat a patch of skin to produce mild pain, she had the migraineur perform distracting tasks such as word games. Distracting the mind while it experiences pain normally causes the pain threshold in a person to rise. Literally thinking about something else should take your mind off the pain and give attention to the task at hand. But in migraineurs, their pain threshold didn’t change. It wasn’t that they couldn’t take their mind off the pain—their brains couldn’t be distracted from the pain as a normal person’s would. “Possibly there is some problem with their attention to a stimulus.”^[3]

Not only do migraineurs have hyperexcitable brains, but they have hypersensitive brains as well. When exposed to a magnetic pulse, migraineurs see a flash of light “at a significantly lower power pulse than do nonmigraineurs.”^[4] The brains of migraineurs have a lowered threshold and sensitivity to their environment. So not only will the brain overreact to the stimulus, but it will notice the stimulus a lot sooner in the first place. It’s a double-whammy that makes the world that migraineurs deal with a lot more difficult. There are many mechanisms to migraine and not all of them are fully understood. Both the body and head of a migraineur are affected, and it's not just during the headache that migraine mechanisms are active.

Even when not in the headache phase, there are chemical imbalances in neurotransmitters such as Substance P, dopamine, serotonin, and magnesium, to name a few. The average concentration of Substance P in migraineurs is nearly double^[c] that of 'normal folk.'^[5] The average concentration of serotonin, which is depleted during a migraine attack, is about 25% lower^[d] than 'normal' during non-migraine phases.^[6] And when given nitroglycerine, a vasodilator used by some heart patients, “a delayed migraine-like headache [resulted] in migraine patients but not in 'normal patients.'”^[7] It's not just about getting headaches due to a chemical imbalance. That chemical imbalance is there all the time, and certain events will cause that imbalance to then trip over into a migraine.

External changes, such as change in pressure due to weather or altitude, increase or decrease in stress (both positive and negative), exercise or exertion, too much or too little sleep, bright or flashing lights (especially fluorescent lights and computer monitors), loud or high-pitched noises, strong smells (especially perfume), or medications, internal triggers, such as hormonal changes, a drop in blood sugar levels, reactions to food, craving for nicotine, illness, allergies, or changes in metabolism all can trigger the chemical changes that lead to migraine. There are also pre-existing chemical states, such as decreased serotonin and/or magnesium levels that can make it easier for migraine to occur. Moreover, there are genetic factors such as the mutation in the calcium channel genes that have been found to be responsible for familial hemiplegic migraine.

Sensory input, either from within the body or outside of the body, enters into the pons and wrongly stimulates the trigeminal nerve. The fine branches of the trigeminal nerve supplying input to blood vessels around the outer membrane of the brain (meninges) cause the blood vessels to react. Prior to the headache phase and at the very beginnings of the migraine attack, there is a drop in magnesium levels, which is believed to be a destabilizing factor causing the nerves in the brain to misfire^[8] (one theory behind types of visual aura). Magnesium interacts with calcium channels, playing a role in overall nerve cell function: “Low magnesium can result in opening of calcium channels, increased intracellular calcium, glutamate release, and increased extracellular potassium, which may in turn trigger cortical spreading depression.”^[9]

Simultaneously, stimulation of the trigeminal nerve leads to the release of serotonin (5-HT) from the dorsal raphe nucleus, which suppresses pain initially. “Serotonin appears to block the peptides involved in over-stimulating nerves and producing inflammation.”^[10] But then depletion over the course of the migraine attack results in pain^[11]. (Serotonin depletion also causes depression and anxiety, two common prodromal symptoms.) Release of serotonin and norepinephrine (also known as noradrenaline) causes a decline in nerve cell function, and along with dopamine, decreased blood flow in the brain. This decline in nerve cell function begins a process known as cortical spreading depression, where waves of nerve activity move across surface of the menages at a velocity of 2-5mm per minute from the back of the brain to the front. This is the start of the aura phase of the migraine attack. Cortical spreading depression was once sited as just the mechanism behind visual auras (such as floaters or zigzag lines appearing in some migraineur’s vision up to an hour prior to the headache), but it’s now linked to migraine pain as well.

At the same time, increased dopamine activity is observed, which has been connected with such prodrome^[12] symptoms. Up to 40% of migraineurs^[e]
experience prodrome. Prodrome symptoms include mood change, loss of concentration, loss of the ability to verbalize, muddled thinking, irritability, confusion, lack of coordination, social withdrawal, loss of balance, stiff neck, cold hands and feet (peripheral vasoconstriction^[f]), loss of appetite, constipation or diarrhea, fluid retention (swelling, edema), fatigue, yawning, increased urination, nausea and vomiting, and food cravings to name a few. Specifically, prodrome symptoms have been associated with increased dopamine activity^[13].

Migraine changes continue with a malfunction in the brainstem. This is the part of nervous system that connects the brain to the spinal cord. Within the brainstem is an area called the pons, and it is in this area specifically that the migraine generates^[14]. “The pons is an ‘attention center,’ controlling how much notice the brain pays to sensory information.”^[15] Migraine affects the trigeminal nerve: the nerve that processes all sensory input. The trigeminal nerve connects the brain stem to the nerves of the head and face. It is the nerve responsible for sensations in the head, scalp, face, and meninges, the protective coating around the brain. The trigeminal nerve enters the brainstem at an area called the pons. Here some of its neurons travel up past a region called the periaqueductal gray matter (PAG), into the rest of the brain. The PAG is a relay station between cortical and brainstem structures and plays a major role in the modulation of pain. It provides signaling to the nerves that conduct impulses from the periphery of the body (all the way to the tips of your fingers and toes) back to the brain. The PAG also influences autonomic^[g] and defensive behavioral responses, such as breathing, heart rate, blood pressure and the fight/flight response. Neurons traveling the other direction along the same path from the PAG to the pons create a negative feedback loop, and damp down trigeminal signaling (known as an antinociceptive^[h] effect).

Cortical spreading depression activates a set of enzymes that allow the blood-brain barrier, the protective membrane that separates local blood vessels and most parts of the central nervous system, to become leaky. Chemicals such as Substance P and Calcitonin Gene-Related Peptide (CGRP) are leaked from the blood vessels into the membrane, causing inflammation. But this inflammation isn’t widespread. Most migraineurs have a specific ‘spot’ that they can point to on their head where they feel migraine pain. Some people have more than one spot where migraine pain occurs, but typically only one is active during a single migraine attack. That spot is where the meninges is inflamed, as discovered by Dr. Marco Pappagallo of Hopkins Medical Research, using Single Photon Emission Computed Tomography (SPECT). “The images showed bright, diffuse patches—a sign of inflammation—at areas in the meninges that precisely matches where patients said they felt their headaches.”^[16] The inflammation of the meninges in migraine causes the sensation of throbbing and the symptoms of nausea, sensitivity to light, sound, smells and movement; the same symptoms that occur as a result of bacterial or viral meningitis, which also has inflammation as one of its mechanisms. But inflammation isn’t the immediate cause of migraine pain. It’s more of a response to migraine pain.

Based on responses from the trigeminal nerve, neuropeptides such as Substance P (SP) and Calcitonin Gene-Related Peptide (CGRP) are leaked from the blood into the meninges causing further inflammation. Substance P, besides causing inflammation of blood vessels, releases serotonin (5-HT) from platelets and increases the permeability of capillaries so that other substances, such as bradykinin, are released into the meninges. Bradykinin, like SP and CGRP, is yet another irritating and inflammatory chemical that stimulates pain-conducting nerves as well. Substance P is also a potent vasodilator, causing the release of nitric oxide (NO) from the endothelium.^[i] Nitric oxide, too, causes vasodilatation.

Dr. Joel R. Saper of the Michigan Headache and Neurological Institute in Ann Arbor, Michigan holds the theory that, “people [with migraine] are born with or acquire a disturbance in serotonin function,” involving an insufficiency or abnormality in serotonin itself, a defect in the receptors that permit nerve cells to take up and release serotonin, or an abnormality in the enzymes that destroy serotonin, breaking it down too quickly—one way of starting the chain of events that lead to migraine.^[17] There is also evidence that suggests certain people are overly sensitive to the effects of dopamine,^[18] which includes nerve cell excitation, and that this sensitivity could trigger events leading to migraine.

In fact, most of the migraine-stopping medications like Imitrex and Relpax are artificial serotonin molecules. During a migraine, the body dumps its supply of serotonin from the brain and the blood, passing it out through the body through urine. Studies have shown that an injection of serotonin stops a migraine. "These headaches," writes Dr. David E. Comings, "are relieved by the injection of serotonin or its precursor, 5-hydroxytryptophan. Blood serotonin drops during migraine headaches. This is followed by an increase in 5-HIAA in the urine. MAO inhibitors, which increase serotonin in the synapses, prevent migraine headaches, and medications that stimulate serotonin receptors relieve the acute pain. Migraine sufferers often report that he headaches stop after they have vomited. Vomiting stimulates intestinal motility and raises blood serotonin."^[19] Unfortunately, pure serotonin is harsh on the body, so since the introduction of Imitrex in the 1990, researchers have since been developing gentler forms such as Relpax and the most recent (to date) Frova.

All this neurochemical activity begs the question, why would the body react in such a way that only seems to enhance the problem rather than control it? Why would the body want to increase its pain sensitivity and irritated state? One answer may lie in observing the body’s response to damage: inflammation and tissue repair.

When the body is damaged, such as when you skin your knee, the nervous system responds initially with vasoconstriction. You may have noticed that the area around the scrape goes white at first (more noticeable with thermal burns—that is burns from hot or cold; not sun burns, which are caused by UV radiation). Then the area around the most damaged tissue then becomes inflamed, turning bright red as a result of localized vasodilatation. Increased blood flow to the area also causes the area to heat up, and forces fluid out of surrounding tissues resulting in swelling (edema). Mediators of inflammation are released to drive and control the healing process. Some of these inflammation-mediation chemicals may sound familiar: histamine, serotonin, bradykinin, and nitric oxide. Nitric oxide, besides mediating inflammation, is a free radical that is toxic to microbes and helps prevent infection. In this way, the injury is neutralized and tissue repair begins.

When headache pain starts and the brain reacts, it is responding with the same healing process used for a scrape, burn or infection. But since there is actually no damaged tissue to which to respond, the substances released that would otherwise be helpful instead aggravate the pain process already begun. The process turns into a neurochemical merry-go-round, and since the brains of migraineurs don’t tune out over time and can’t be distracted from the pain, the neurological merry-go-round spins out of control.

How the headache stops is not clearly understood, and very little is written on the matter. It may be that the headache ends once the brain has finished cycling through its “healing” (tissue damage reaction) process. It may be that some mechanism deeper in the brain resolves and ends the headache. No matter what the case, what is known is that even after the headache phase is over, there is still the postdrome phase of migraine wherein abnormal cerebral blood flow and EEG readings can be detected up to 24 hours after the pain stops. More research in this area is necessary. Hopefully someday we will be able to stop migraines as easily as they seem to start.

[a] Vascular – related to the blood vessels

[b] Vasodilatation – the expansion and widening of blood vessels due to relaxation of the smooth muscle in the vessel wall, causing a drop in blood pressure

[c] Nearly double – the actual number was 1.97

[d] About 25% lower – actual percentage was 23.7

[e] I suspect this number is actually a lot higher because I didn’t recognize my own prodrome symptoms until I’d been suffering from migraines for over a decade.

[f] Vasoconstriction – the shrinking and narrowing of blood vessels due to flexing of the smooth muscle in the vessel wall, causing a rise in blood pressure

[g] Autonomic – involuntary

[h] Antinociceptive – increased pain tolerance

[i] Endothelium – a thin layer of cells that lines blood vessels

[1]
Bolay H, Reuter U, Dunn AK, Huang Z, Boas DA, Moskowitz MA, “Intrinsic brain activity triggers trigeminal meningeal afferents in a migraine model,” Natural Medicine 2002 Feb; 8(2): 136-42.

[2]
Phillips H, “All in the Mind,” New Scientist, 21 June 2003: 36-39.

[3]
Pain, vol 101: 25.

[4]
Young W, MD and S Silberstein, “Migraine and Other Headaches,” AAN Press, American Academy of Neurology, 2004, p 67.

[5]
Nakano T, Shimomura T, Takahashi K, Ikawa S, “Platelet Substance P and 5-hydroxytryptamine in migraine and tension-type headache,” Headache, 1993 Nov-Dec; 33(10): 528-32.

[6]
Nakano T, Shimomura T, Takahashi K, Ikawa S, “Platelet Substance P and 5-hydroxytryptamine in migraine and tension-type headache,” Headache, 1993 Nov-Dec; 33(10): 528-32.

[7]>
Tepper, Stewart J. MD, Rapport, Alan MD, Sheeftell, Fred MD, “The Pathophysiology of Migraine,” Neurologist, 2001 Sep, 7(5): 279-286.

[8]
“Causes of Migraine,” Nidus Information Services, Inc., http://www.nym.org/healthinfo/docs/097/doc97causes.html,
2001.

[9]
Tepper, Stewart J. MD, Rapport, Alan MD, Sheeftell, Fred MD, “The Pathophysiology of Migraine,” Neurologist, 2001 Sep, 7(5):279-286.

[10]
“Causes of Migraine,” Nidus Information Services, Inc., http://www.nym.org/healthinfo/docs/097/doc97causes.html, 2001.

[11]
Brody J, “Studies Unmask Origins of Brutal Migraines,” The New York Times, October 11, 1988.

[12]
“Migraines and Migraine Management,” MEDCEU, MFI Group Inc., http://www.medceu.com/index/index.php?page=get_course&courseID=1445&nocheck,
2006,

[13]
“Causes of Migraine,” Nidus Information Services, Inc., http://www.nym.org/healthinfo/docs/097/doc97causes.html, 2001.

[14]
Goadsby PJ, “Neuroimaging in headache,” Microscopy Research and Technique 2001; 53(3): 179-187.

[15]
Phillips H, “All in the Mind,” New Scientist, 21 June 2003: 36-39.

[16]
Centofanti M, "Migraine Pain Not Mainly in the Brain," The Gazette Online, The Newspaper of the Johns Hopkins University, May 3, 1999; 28(33).

[17]
Brody J, “Studies Unmask Origins of Brutal Migraines,” The New York Times, October 11, 1988.

[18]
“Causes of Migraine,” Nidus Information Services, Inc., http://www.nym.org/healthinfo/docs/097/doc97causes.html, 2001.

[19]
Comings D, “Serotonin: a key to migraine disorders?” http://findarticles.com/p/articles/mi_m0876/is_n70/ai_15911357/, Summer 1994.

A Shout-Out to Denver TV News Broadcasters

2011-11-29T03:23:00.000-07:00

I need to give a big thank you to the local Denver Newscasters. I wrote an email to one of the stations we watched to let them know that a graphic they used triggered pain in me because of my migraines. It was used during the weather report, and that was the part of the news I really needed to watch! Since then, I've noticed that all of the local news stations have removed flashing graphics from their entire newscast. Thank you, Denver. I moved hear for my health and found a home here. You have truly welcomed me in a way that brings tears to my eyes, and restores my faith in humanity.

Sincerely,
Pamela Curtis

Procrastination & Forgiveness

2011-11-28T03:44:00.004-07:00

I have a Midwest work ethic. I've never liked taking more than two weeks off from work. It makes me anxious. I should be doing something. Something constructive. Something to take care of business. But that's really difficult to do when our bodies don't cooperate. And it's hard to override those feelings. For me, I struggle daily with feelings of guilt over what I'm not doing but should be doing. To my heart, it doesn't matter that that my body is kaput. I still want to do these things. The wanting hurts. So I've had to learn to slow down.

As Jenny Pettit puts it,

"With chronic illnesses (and pain and fatigue) comes plenty of chronic guilt. We may voice the legitimacy of our limits for the rest of the world...but inside our own heads we hear so much doubt. Do I really need a 4 hour nap? Can't I stay up late and get this task done? Why should I get to claim "brain fog" when other people wouldn't need to stop? (And yes, "brain fog" sounds pretty silly to us, too, even though we live the debilitating effects.)

"Yes, we do. Yes, we need to nap - our bodies are fighting 24-7 battles against themselves. No, we can't stay up late - what little functionality we have is strongly correlated to our ability to adhere to a schedule. We 'get to claim brain fog' - our work is no good when it comes from a low-hanging cloud. We need to forgive ourselves.

"We need to BELIEVE it's ok to live within these limits. We need to allow ourselves compromises with ourselves. We need to accept we aren't going to be able to build the tower of Babel on a 4 day weekend just because "it has to get done somehow", and love ourselves anyway. We need to ask ourselves for forgiveness and give it wholeheartedly and without delay."
(Forgiving Myself - UII - Understanding Invisible Illnesses)

It's not that I won't reach success. It's just that it's going to take me a lot longer to get there. Yes, the laundry will be hung up eventually. Yes, I will be able to finish that blog post. Yes, that task is impossible for me right now. But it may be possible later. I can do things in small, manageable steps. I don't need to complete everything at once. I can accept my limits. I believe I've used this analogy before, but it bears repeating. I like to think of it like driving on the highway. There's a big difference between acceptance and approval. I may not approve or like that the car in front of me has come to a sudden stop, but I accept the fact that it has happened, and slam on my breaks so I don't cause an accident.

There are all sorts of things that can happen to put walls in my way. I need not beat myself up about it in the meantime. In fact, science shows that the act of forgiving ourselves for doing poorly can actually help use do better the next time, as it helps us change our behavior for the better. Beating ourselves up about it makes for poorer performance, as does using forgiveness as a "free pass" to continue the bad behavior. If we're focused on success as our goal, it's better to forgive than punish. This was shown in a recent study of college students and their reaction to procrastinating studying for an exam. If the student did poorly the first time, forgiveness was the key to improve performance.

"Forgiveness allows the individual to move past their maladaptive behavior and focus on the upcoming examination without the burden of past acts to hinder studying. By realizing that procrastination was a transgression against the self and letting go of negative affect associated with the transgression via self-forgiveness, the student is able to constructively approach studying for the next exam."
Timothy A. Pychyl from Psychology Today's Don't Delay

Also, just because there's a wall there now doesn't mean there will always be a wall there. I may have an inspiration and discover a door through the wall, instead of banging my head against it. I may find a way around the wall. The wall may come crumbling down. Sometimes, however, we find a way over, where we're able to use the walls like springboards to success. One of the most inspiring stories I have heard lately is that of Amy Purdy, a woman who lost her legs below the knee and now is a professional snowboarder.

Now, while I may not end up a professional snowboarder (that's not really my thing) I can, and have, used my disability to further my work as a writer. My audience has changed and the pay is lousy (e.g., non-existent...). But I'm still contributing to society in a positive and constructive way. That's why I made this blog. Helping others with problems similar to mine helps me help myself. So it's okay it I have to do it in bits and pieces. I can forgive myself my procrastination and do more when I'm feeling better. The point is I'm eventually able to get it done and delivered. I may not be at the rate it was when I was well, but I still do it. I can accept my shortcomings, manage them best as possible, and forgive myself the rest.

"Perfection is the enemy of good enough." -Russian Proverb

Opportunities of chronic nausea

2011-11-27T09:23:00.008-07:00

One of the effects of small fiber neuropathy is a condition called gastroparesis. That's a fancy name for "your stomach is on strike." What happens is a disruption of nerve signals to the stomach, and the stomach doesn't know to do its job. The result is constant nausea, premature fullness during meals, weight loss without trying (not entirely a negative), and vomiting (rare for me, thankfully). And now, as I have discovered on my very own... dehydration. Turns out the rheumy was right, even though his test was unfair. My kidneys are angry at me right now and I'm on extra medication for the pain. Not good. I should take better care. And I will. Herein is my plan of action.

I am going to be on anti-nausea medication on a regular basis. It's not enough to try and tough it out anymore. Forcing myself to suffer is not bringing positive results. It might be lauded in literature, but in my reality it's not the way to go. I don't like adding another pill to the mix at all, but it can't be helped. The consequences of not taking it are not acceptable. I am responsible for this. Therefore, I can change this and make it better.

I am going to carry a bottle of water with me at all times. I'm going to make a game of it like drinking games for cheesy movies, only for me it will be water. I will place bottles of water around the house and every time I enter a new room, I will take a drink. Every time I go to take a break from whatever I'm doing, I take a drink. At every meal I will drink an entire glass of water. It will grow into a pleasant ritual that will ensure my kidneys' health.

It may be a little silly or strange, but when it comes to my health, that doesn't matter. Avoiding dialysis is far more important than avoiding blows to my pride. Instead, I can use my embarrassment as an opportunity to enhance my humility and remember that for all my talents, I am human and a delicate flower. I need to be cautions, not cocky. Pride goeth before the fall, and when I fall, I hit the ground hard. It's better for me to blush and own it.

Also, it's an opportunity to build self-esteem. Following the rules of my game will make me feel like a good girl. It may be a simple act---taking a sip of water---but for me, it's obviously more difficult. So it doesn't matter that the act is small. The act is important. And since it's easily accomplished, that's a little boost to my esteem each time. My new routine is a joyous opportunity for growth rather than a new oppressive obligation. Taking care of myself becomes rewarding and fun, and as a result, easier to do and easier to stick to. #winning ;^)

I had originally tilted this post "Consequences of chronic nausea." But it quickly became obvious to me, as I put my thoughts on the screen, that I wasn't talking about consequences. Oh sure, technically there are consequences, but my attitude towards them makes all the difference. My life may be more difficult to manage than most people, but these "consequences" have made me clever, enduring, patient, and wise. I may have times when I think the cost was pretty steep, but I cannot deny that there have been great benefits and opportunities from getting sick.

Strange how the world works, neh?

Dependence versus addiction

2011-11-19T14:06:00.004-07:00

"Oh, I had so much trouble stopping that medication. I was ADDICTED to it!" How many times have you heard this? It's bull$#!+. What they're describing is DEPENDENCE, which is a very different animal. I will suffer withdrawal symptoms if I stop eating. Does that mean I'm addicted to food? No. Absolutely not. There are blood pressure medications that can't be stopped suddenly because of withdrawal symptoms. That's not addiction. And yet, there is this idea out there that just because someone has trouble coming off of a medication that's a sign of addiction. That's propaganda and a dangerous lie.

A similar dangerous misconception is the idea that increased tolerance is a sign of addiction. That's malarkey too. Bacteria become drug resistant. People with seizures will become drug tolerant and need more of their medication. Many people with depression and anxiety will become tolerant to their SSRIs and have to increase dosage or switch medications or add other medications into the mix. But we don't say that those people have become addicted to their antidepressant. Epileptics aren't addicted to their anti-seizure meds. We don't say that the bacteria is addicted to antibiotics. That's just silly.

Addiction has a key feature that separates it from dependence. That is, there are negative consequences from taking the substance, but the addict will take the substance anyway. That's like my German Shepard who can't figure out not to stick his nose in the yellow jacket nest because he'll get stung. Another example would be someone who keeps sticking their hand on a hot stove even though they get burned. It's the addict who says, "I always end up in jail when I drink. Next round is on me!" It's insanity.

The problem with painting dependence as addiction is that it makes the problem seem a whole lot bigger than what it actually is. This is great for getting people to rally to your cause, but it's a bit like going to war because the enemy "might" have weapons of mass destruction. Oh, wait. We did that, didn't we?

And that's the point of propaganda: get everyone worked up about the tiger that might be lurking in the bushes to justify the action you want to take anyway. Was Saddam Hussein committing genocide against his own people? Absolutely. He was a horrible dictator. Is addiction a problem that ruins lives? Absolutely. And it can hurt the lives of people not even taking the substance. But the truth is it is not as bad as the media and the talking heads of government would have us believe.

The truth is that half of all addicts outgrow their addiction naturally according to the DEA. The truth is addiction is a disease that can be managed like hypertension or asthma.

The truth is "the global prohibition of drugs has manifestly failed to stem the use of narcotics, [and] it has generated enormous costs and perverse outcomes. In the United States, the war on drugs is generating alarming violations of civil liberties, weakening the rule of law, and compromising law enforcement efforts. The U.S.-led drug war is also undermining legitimate foreign policy goals around the world, including the spread of liberal democracy and an effective war on terror." (CATO Institute, Ending the Global War on Drugs)

Don't believe the hype.

Lies I choose to believe

2011-11-17T14:27:00.002-07:00

My friend Jim once told me, "There are lies that I choose to believe, even though I know they're not true, because it makes me a better person when I believe them." I can totally understand that. Yesterday, I had a BIG wall of denial come crashing down. I've been telling myself that my feet are just cold and that I don't want to wear socks because that will make my feet hurt. But yesterday I had to have neurological testing. I was being stuck with a sharp pin and I couldn't feel it. My feet aren't just cold. They're numb. My nerves are dying. The technical term I was given is small fiber neuropathy. And it's slowly, progressively getting worse. There's nothing we can do about it and only a little more we can do to manage the symptoms. This is an obstacle we can't overcome. What makes me a better person is to forget about it.

I act responsibly by knowing my limits and carrying emergency supplies. But after that, I don't let it come into my brain. If I think about the pain that is going to make me stop working on a painting, I won't start painting in the first place. If I worry about the inevitable pain I'm going to get when I'm out walking around, I won't leave the house. At all. It's got to be something big enough and important enough to make me go. And I'll be honest, there have been times when it was only because the current situation I was in was so unbearable that I was able to change anything. I *hate* going to the ER. But I know from experience once my pain hits a certain point, there's nothing at home I can do to stop it, and there's a reasonable chance it could trigger devastating pain that will last for years. It's happened before. But I can't think about that all the time or I wouldn't do anything.

I'm never going to get better. And I'm going to slowly lose my abilities and senses as time goes on, except when the pain decides to flare. Then I'll be feeling all too much. So what? I wasn't going to be young forever either. Everyone's skills decline over time. Mine just sooner than most. But not as bad as some others, either, so there's that.

It does me no good to remember on a daily basis that I'm losing ground. I'm never going to not lose ground. It's all downhill from here, and there's nothing anyone can do about it. So what else is on the menu? We're all going to die too, but we don't going around wailing about it. Right now I can still walk and type, drive well enough to see and hear well enough to not require hearing aids. I'll work with what I've got for as long as I can and deal with the rest of it when it gets here. Worrying about it now does me no good.

Still, yesterday was filled with tears as the reality of just how much nerve sensation I've lost became apparent. I didn't know it was that bad. But it shows how successful I've been despite the loss if I haven't been able to notice the deterioration. The lie that everything was okay allowed me to function even though everything was not okay. I'm okay with that lie.

Building self-esteem in pain

2011-11-13T22:11:00.003-07:00

Fifty-eight percent of chronic pain patients I surveyed say that they have not gotten used to their pain. The other 42% responded with, "depending on the pain, you can get used to it." But what does that mean, exactly? For most people it's not that they can get to a point where they can ignore the pain. That was actually a rare occurrence for folks. What was more common was the learned ability to do activities in spite of the pain. If pain is forgotten, it's only momentary, and far too fleeting. And there are always still days that overwhelm. Most all respondents expressed some self-censorship. Other people, healthy people, don't want to hear about our pain. We learn the hard way that when we're asked how we're doing, we should have a polite answer ready and not use the real answer.

So that I'm not actually lying, I'll respond, "Hanging in there." It sounds positive enough, and it's true. That's one of the things most isolating about something that only we are suffering. I lived through the great Midwest flood of 1993. There were parts of St. Louis that became islands, as bridges and roadways were under water. Everyone knew the need to share about this trouble or that catastrophe because it was too much to keep it bottled inside. Everyone knew someone affected and could commiserate in the loss. Everyone had a sense of despair. When we mourned, we mourned together. The shared sadness was a bonding experience. We were a community, crying in one anguished voice.

Chronic illness is its own private hell. If you look good, healthy people can't understand what all the fuss is about. If you don't look good, people will treat you as though you have contagious, even when you don't. It's primal: we're hardwired to avoid sickness and seek health. People may not even know they're reacting that way, but it's in body language and tone of voice. Healthy people become stand-offish. Worse still, some of us experience bullying and name-calling during physically low times. It's sometimes really difficult for other people to understand our limitations. We're not saying, "I can't..." for attention. We're saying, "I can't..." because there are nasty consequences on the other side if we even try.

What I've learned to do is bow out gracefully. I thank whomever for the invitation, and give some polite reason like, "I think I should rest up a bit tonight." I only ever mention I'm in pain if there's something that I want done about it right now. Oh, to be sure, I have the occasional whine and moan, but it's brief. I've learned over the years that I can't afford to be self-pitying. It becomes too easy for me to make excuses as to why I shouldn't be responsible and keep my room clean or do the dishes in a timely manner. Yes, it almost always feels better to rest. But nothing gets done that way. When I adopt a "get 'er done" attitude, I may pay for it in increased pain and decreased energy, but I feel better in my soul.

I always feel better about myself when I treat myself with respect, when I act responsibly, and when I take care of my business. I heard a motivational speaker phrase it as, "to build self-esteem, do esteemable acts." I would add the caveat, "when no one is watching." It's one thing to do the right thing when there's an audience to cheer your heroism. It's quite another thing to be good for the sake of goodness. Yes, making my bed every morning is a pain in the butt, but the whole room looks nicer and I feel better about myself and my environment when I make the extra effort. Vacuuming my bedroom may take an entire afternoon and evening's worth of energy, but it's those constant little reminders of "I'm doing the right thing" that allows me hold my chin up.

I once had a vision when I was in a level 10 migraine. The pain was excruciating, and I was soaking my neck in hot water to try and get my shoulders to unknot while holding an ice pack on my head to keep the pounding at bay. My vision went white, and I saw myself, as an adult, walking hand-in-hand with me as a child. I told myself, "You do understand that this child is within you, right?" I was a strong believer of the inner-child methods in psychology. Working with them had helped me a great deal through the years. In the vision, I nodded yes to myself. My other-self got really stern and demanded, "then how the hell can you tell this child that it's okay to be in that level of pain?" It was then that I finally stopped toughing it out and I took the pain pills.

It's the same way with being responsible towards myself. When I don't clean my living space, when I don't take care of my appearance, when I don't behave as a responsible adult, I'm telling my inner child that's the best she deserves. When I break a promise to myself as adult (because sometimes it happens) I make sure to stop and explain to myself why I made the decision to do that. I know I'll feel sad for not keeping my word, but sometimes it can't be helped. I tell myself, "Go ahead and feel bad... take the hit. We screwed up. But it happens. Dust yourself off and do better next time." I do that so that my inner child understands not to take it personally. We're not doing bad because we are bad. Sometimes bad stuff happens to good people. The point is to keep trying. That's something to be proud of.

As my dad likes to remind me, "It's not the mistakes we make that matter... It's how we recover from them that counts." Yes, I'm in chronic pain. Yes, of course it impacts my mobility, my activities, and how I live my life. No, I don't talk about it as much as I would like. I remember a time before my disease and the powerful woman I was. That still hurts to be reminded of when I can't do something. But today I'm learning how to be powerful in more subtle, and I believe, more substantial ways. Where I've lost the ability to be exuberant, I've gained a lot of wisdom to take it's place. I can hold myself in esteem despite the pain.

Testing limits

2011-11-11T16:02:00.000-07:00

I was a precocious kid, and into everything. Attempt to hide something up and far away, and I would just find a way to climb and scurry to where it was found. Leave me alone in a room and you just may come back to find I'd taken apart the furniture out of curiosity. I've always been very good at testing limits. Every once in a while, I still like to test the boundaries of my disease. This morning, it heartily reminded me: it's still here.

I'm usually very good about keeping a schedule for my pills and sleep. I would do the same for food, except my chronic nausea is too unpredictable for meal times. I wasn't always this good. I learned the hard way. When I stick to a schedule, I just feel better. I'm more functional and I can get more things done. My mood is better when I wake up in the morning and go to bed at a decent hour. Does this mean I can always do this? No. There's always the occasional migraine that throws the whole system out of whack, and then it's a few days or a week before I can get my health back in the groove again. I try to avoid scheduling things in the morning, because it's always a coin toss how I'm going to wake up. I always make sure to get a full nights sleep before I have to go meet anyone for anything.

Last night, I pushed it. Not only did I stay up late, but I woke up early, and I used an alarm clock. I gave up alarm clocks a long time ago. The sudden jarring from sleep sends my adrenaline rushing into my system, which makes me really, really ill. Imagine the symptoms of a stomach flu for a few hours every morning. That's what alarm clocks to do me. Nausea isn't the best thing to have when you're trying to keep pills in the belly. I canceled this morning's meeting and crawled back into bed.

Yeah, I really screwed up this morning. But I'm putting it in the #winning column anyway. There are reasons why I live the life the way I do, and those reasons are good ones. I can relax now and know that I'm doing well enough. Forcing myself to work harder isn't going to make this situation better yet. I'm still fragile. That's okay... I can work within those limits and still be wonderful.

Testing limits as a kid may have annoyed the hell out of my parents, but it sure is a useful skill to have when battling a disease!

End the War on Patients

2011-11-03T17:04:00.004-06:00

"If I take this addictive substance, it will turn me into an addict!" This is a myth I hear all the time from friends, from family, from the TV, and from well-meaning but uninformed health professionals. Despite all they hype and propaganda, both the FDA and the National Institute of Health state that: "Studies have shown that properly managed medical use of opioid analgesic compounds (taken exactly as prescribed) is safe, can manage pain effectively, and rarely causes addiction." (A Guide to Safe Use of Pain Medications, FDA) But for some reason we're all being taught that if you take a nice, church-going housewife and give her oxycontin, she'll turn into a back-alley dealing junkie with a spike in her arm. But this simply isn't true.

An estimated 12.8 million Americans, about 6 percent of the household population aged twelve and older, use illegal drugs on a current basis (within the past thirty days). This number of "past-month" drug users has declined by almost 50 percent from the 1979 high of twenty-five million -- a decrease that represents an extraordinary change in behavior. Despite the dramatic drop, more than a third of all Americans twelve and older have tried an illicit drug. Ninety percent of those who have used illegal drugs used marijuana or hashish. Approximately a third used cocaine or took a prescription type drug for nonmedical reasons. About a fifth used LSD. Fortunately, nearly sixty million Americans who used illicit drugs during youth, as adults reject these substances.
(Substance Abuse and Mental Health Services Administration, Preliminary Estimates from the 1995 National Household Survey on Drug Abuse (Rockville, Md.: U.S. Department of Health and Human Services, 1996), emphasis mine).

In the year 2000, drug abuse cost American society an estimated $160 billion. ...Health care costs for drug abuse alone were about $15 billion.
(US Drug Enforcement Agency)

Now compare this to the epidemic of chronic pain in this country.

Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine (IOM). The report offers a blueprint for addressing what it calls a "public health crisis" of pain.

The reasons for long-lasting pain are many, from cancer and multiple sclerosis to back pain and arthritis, and the chronic suffering costs the country $560 to $635 billion each year in medical bills, lost productivity and missed work." (Report: Chronic, Undertreated Pain Affects 116 Million Americans, Maia Szalavitz, June 29, 2011)

Right now, we are punishing the many for the actions of a few. There are 116 million people undermedicated for pain because of our war on drugs, to try and fix the behavior of 12.8 million people, half of whom outgrow drug abuse. So really, we're punishing 116 million---who have done nothing wrong except be the victim of misfortune---to try and curb 6.4 million addicts.

We're spending $160 billion on the war on drugs, but in the meantime we're losing four times that amount for not treating our chronic pain patients. Those skyrocketing Medicare costs? New non-narcotic medications can cost as much as $30 for one pill, they don't always work, and they come with a host of side effects. Narcotics, which have been manufactured for decades, are more tolerated by the human body, are more understood by science, and can cost as little as $4 for a month supply.

It makes sense to make these people productive with quality of life. Sure, we don't want folks to settle for just managing the symptoms, but that's true with any disease. But we don't leave the patient there to bleed to death while we try to figure out how to treat the wound. Why then do we have pain patients suffer while they search for a more suitable solution to their pain? When we deny patients adequate pain control, the pain can become its own disease.

Among the important findings in the Institute of Medicine report is that chronic pain often outlasts the original illness or injury, causing changes in the nervous system that worsen over time. Doctors often cannot find an underlying cause because there isn’t one. Chronic pain becomes its own disease.

“When pain becomes chronic, when it becomes persistent even after the tissue and injury have healed, then people are suffering from chronic pain,” Dr. Mackey said. “We’re finding that there are significant changes in the central nervous system and spinal cord that cause pain to become amplified and persistent even after the injury has gone away.”

The institute emphasized the importance of prevention and early treatment, a novel concept for many doctors who try to diagnose the source of pain before treating it or advise patients to wait it out in the hope it will go away on its own.

“Having pain that is not treated is like having diabetes that’s not treated,” said Ms. Thernstrom, who suffers from spinal stenosis and a form of arthritis in the neck. “It gets worse over time.”
(Giving Chronic Pain a Medical Platform of Its Own, Tara Parker-Pope, July 18, 2011)

Our current policy on narcotics is literally crippling people. Not letting people have adequate pain control is destroying bodies and lives at a rate of 18 times worse than addiction. We didn't ask for this pain. We did nothing wrong to deserve this kind of treatment. We are the uncounted casualties in this "war" on drugs.

I'm just a simple blogger. But I think we can realize, as a society, that we are sophisticated enough to treat our patients with mercy and curb the consequences of addiction at the same time, without sledgehammer tactics. Right now, the wisdom of the FDA is being trampled by the DEA. Doctors and patients are stuck in the middle, suffering. This needs to change.

Seriously... Y'all are doctors, right?

2011-11-01T14:11:00.000-06:00

Good news... my GP pointed out that 1) my kidneys are fine, 2) I'm under half the max daily dose for ibuprofen, 3) my rheumy is using an unrealistically narrow test range for kidney function, and compared with my tests from other doctors, I never had to worry. Yes, folks... these are the fine, upstanding doctors to which I am entrusting my health. With this kind of care, it amazes me how these guys can practice medicine with a straight face. Things have gone from snafu to tarfu, to fubar, to "alright, now it's just funny...". And I've finally gotten to that blessed point where I can say, ya know what? I'm DONE.

I don't care what name these guys want to put on what I have. Who cares??? Just make me functional. Make it so I can work again. Make it so I can trust my body and I can decide what to do with my day rather than having to plan what I do with my day. Give me the physical freedom and reliability to I can work. So I can tell an employer, yes, I can be there from the hours of 9am to 5pm and meet productivity expectations. I don't care what pill you want to throw at it, so long as it works, isn't horribly expensive, and doesn't have unmanageable side effects. Yes, there are consequences to everything, but the consequences right now of me not being able to work are next to catastrophic. I'm on the edge here, and I don't like it.

Make me functional, and I can even afford decent health insurance!! I've got head hunters contacting me now, even though I haven't had my resume up for a year and I haven't worked in nine. It wouldn't be difficult for me to find good paying work, even in this economy. But if I don't have the foundation of my health, I can't tell an employer I can be there. If I can't trust my body, I can't make commitments like that. Employment would change everything for me. I'd be back on the road of life again. I'd be able to save for the future, live responsibly under my own contributions, engage in the fabric of life again. It would turn the world into a place of opportunity.

And yet... for whatever reason... these guys and gals can't get their heads together. I have to laugh, because this is terrifying. There's no way for me to tell at first glance whether or not a doctor knows what they're doing. I have to go to another doctor to find that out. But I can't even trust that doctor, so I have to go to a third... And I can't help but think, do any of y'all know what you're doing?? I heard you all earned degrees and won awards and stuff. Is that all just PR? What's going on here? How is it that I can go to three doctors and end up with four opinions?

And they wonder why I don't believe them when they try and sell me on the idea that they're my savior. Yeah... soon as y'all get your act together, I'll get over these giggle fits.

My continuing saga...

2011-10-26T14:14:00.002-06:00

Nope... Didn't speak too soon. Oy vey. My doctor still thinks I don't have what I have even with the blood results. I had to pull hospital administration in again to get her to contact me. I had my other doctors look at the test results and they agree I have an abnormal response. She's the one who is still insisting she knows best, even with evidence to the contrary. I'm done. I've talked to administration and they're going to switch me to one of the fellows. I can't afford to be down for several months, so I'm going to ask if there's another way to get these results to finally show one way or another. (I know there is. It requires hospitalization, however, because of the risk to life.) But, I'm also going to explore the other avenues she proposed. I have to eliminate all other possibilities, so I need to explore cardiology and neurology. I've got a lot of work ahead of me.

In the world of the strange and wonderful, I don't have Sjogren's Syndrome!! I don't know how on earth that happened, and neither does my rheumatologist. We discovered an issue where he has the records from my previous rheumatologist that discovered the Sjogren's, but he doesn't have the actual lab reports. I put in a call to my old doctor to see if we can't hunt those labs down.

I'm still shocked. Now the theory for my pain is either central neuropathy, fibromyalgia, or both. He's leaning towards both. Problem: there aren't many medications or therapies available for the treatment of either. There are about 5 medications, and I've been on all of them. A lot of them I had a severe side-effect that made it impossible to continue the medication. It's no good to ease a pain problem while causing a cardiovascular problem.

To complicate this, my kidneys are complaining. My rheumatologist has had me swear off NSAIDs. No more Aleve, no more Advil, no aspirin, no more Toradol in the ER. I need my kidneys to last. That's kinda important. Right up there with the heart. My doctor warned if I don't nip this in the bud now, I would need dialysis later on. No thank you. I go to the infusion center for testing often enough. The good news is we've caught it early enough. I can change my behavior and stave off future problems. Still, I have to now inform doctors that I've got the early signs of kidney disease. That's not something I wanted to add to the list.

I've scheduled a follow-up with my GP to get him up to speed on everything, also to get me to the doctors to explore the other theories. I'd love to go to a cardiologist, because I know I'm in terrible shape, and my heart probably matches. Cardiology is pretty straightforward. I'm not frightened of those doctors. Neurologists, on the other hand... they deal with spooky things like receptors in the brain and salt channels in the nerves, and all sorts of stuff we don't understand. I've had some horrendous experiences with neurologists and even worse with neurosurgeons. I'm very trepidatious and nervous about dealing with one of those.

But we need more answers. I want answers. There's no question that I'm sick. The question is what to do about it. In order to know which solution to choose, we've got to identify what's going on. I wouldn't want my doctor to operate on a healthy leg. I don't want to take a medication for a condition I don't have.

These are complications that I did not expect. Not one bit. But that's life, neh? Time to make the best of it.

The Myth of Doctor Knows Best

2011-10-21T22:39:00.000-06:00

Doctors shouldn't have personal opinions. At least, that's the anecdotal evidence I collected in a recent online survey. All the patients I talked to said they would find another doctor if the one they saw a doctor who took their patients' health decisions personally. We believe, pretty unanimously, that our health decisions are ours and ours alone. That the doctor is there to provide council, advice, access to therapies, medication and aid devices as needed---without judgement. It's our belief that it's none of our doctors business why we refuse a suggested course of action. The doctor should never be offended if we don't agree with their suggested course of action. As patients, we should know all our options. And doctors should always be professional, never personal. "My body, my life," is the overwhelming consensus among patients.

But from the doctor's point of view, they're the ones who got the education. They're the ones who woke up for those 8am classes and studied instead of partying as an undergraduate. They're the ones who slaved for the MCAT. They're the ones who memorized all the bones, muscles, and half a million other things. They did the residencies working in crisis conditions. They're the ones who have seen people with conditions worse than yours. They KNOW. They've worked hard to get here. They have the degrees to prove it. Why aren't their patients more trusting? Why aren't their patients more grateful?

One difficulty with assuming "doctor knows best" is that our understanding of our bodies and how they work is evolving every day. There are studies out now that show that, "You can look great in a swimsuit and still be a heart attack waiting to happen. And you can also be overweight and otherwise healthy. A new study suggests that a surprising number of overweight people -- about half -- have normal blood pressure and cholesterol levels, while an equally startling number of trim people suffer from some of the ills associated with obesity." (Half of overweight adults may be heart-healthy.) We go so far as to have a world-wide campaign against obesity because "health care told us so." but sometimes our assumptions are downright wrong. We can't necessarily look at a person and know whether or not they're healthy. Not even if they're fat!

It's additionally difficult to trust a doctor's opinions for us when we know that doctors will choose more risky procedures for themselves, but won't suggest the same to their patients. Equally troubling is the recent study that showed: When you dislike patients, pain is taken less seriously. Before you say (as one article did) that the study used "observers" and not professionals like doctors, know that doctors are just as vulnerable to irrational decisions as laymen. A 1995 showed that doctors, specifically, are vulnerable to irrational decisions making: "In one scenario involving a patient with osteoarthritis, family physicians were less likely to prescribe a medication when deciding between two medications than when deciding about only one medication (53% vs 72%; P<.005). Apparently, the difficulty in deciding between the two medications led some physicians to recommend not starting either. Similar discrepancies were found in decisions made by neurologists and neurosurgeons concerning carotid artery surgery and by legislators concerning hospital closures." (Medical Decision Making in Situations That Offer Multiple Alternatives)

As a patient, I know: Caveat Emptor - Let the Buyer Beware.

Now, it's not my intention to vilify doctors. Far from it. What I'd like to offer is a way to improve your patient relationships.

First, it's not about how much you know or how much education you got. Your technical skills will be proven with the care you provide. Check your ego and emotions at the door (as much as possible).

Second, make your patients feel like the priority. "A nationwide study ...recently conducted from a sample of 10,000 individuals reveals that for physicians, the medical outcome and the extent to which the physician prioritizes the patient’s case gains the patient’s trust." (GW Assistant Professor of Organizational Sciences Nils Olsen researches how people deal with complex choices.)

Third, realize that you are just as susceptible to irrational behaviors as the rest of us. Getting M.D. tacked to the end of your name did not turn you into Mr. Spock.

Finally, "doctor knows best" is fantasy we should lay to rest... for all our sakes. It's never fun to have egg on our face. And if our doctor-patient relations is based on "doctor knows best," well, it looks much that worse when things don't turn out how we expect.

May have spoke (typed?) too soon...

2011-10-18T23:47:00.000-06:00

I was slightly misled in the turnaround time by the hospital staff (irony there) and was told by a nurse I should expect a call this Thursday. I had a feeling there was a good idea in trying the office again and got a person on the phone. I kept the honey on my lips and the vinegar in my heart, and I have new hope. Always a good thing. Of course, my tune may change again on Friday! lol That's all for now. Deep in thought.

Continuing snafus = vote with your feet

2011-10-14T16:48:00.001-06:00

It's been a week since my last test result came in. I still haven't heard from my doctor's office. I've contacted hospital administration. I was told 72 hours was reasonable. It's solidly in the unreasonable category now. I received email alerts as to these test results. She certainly did too. And now I have to wonder am I going to be cut off from the care I need and the possible cure for my disease because of one woman's attitude. That's not a fun thought. I haven't done anything wrong. Yet this feels like punishment.

I was cordial in the office visit. I told her my history. I even went along with her theories that I was autoimmune thyroid and could possibly come off my prednisone. I followed her course of action. I didn't badger the office or the staff. My messages were polite and included all the information they require (birth date, spelling of the first and last name, phone number). Hospital administration looked in to all this to see that my claims were valid. They agreed. But still this continues.

She's not on vacation any time this month. Hospital administration made sure of that so that I wouldn't expect a reply while she's out. She's been in the office all this week. There's no excuse why this would take this long.

I can't prove it, but I'm pretty sure the doctor either doesn't like me personally or doesn't like my case. Doesn't really matter. People put off what they don't want to deal with. I'm being put off. Once is a fluke. Twice is a coincidence. Three times is a pattern.

I can't make her want to work with me. I can't force her to do her job. That's only going to increase her resentment towards me, which is the last thing I need. There's really only one option.

Vote with my feet.

I'll wait to hear from hospital administration, then ask if they can find me someone who would actually look forward to working with me and can handle the rare pituitary aspect. I'm not holding my breath on that one. I've also had the experience where one bad encounter with one doctor can spoil the whole network for me. I'll also put a call into my old neuroendocrinologist and ask them if there's anyone, besides her, they can recommend in my area.

I hate this part: starting over.

Re-imagining my disease...

2011-10-07T19:00:00.001-06:00

I like to make up stories to comfort myself. Today's pretend is that I share the same soul with a warrior nun in fantasy Shogun dimension. When I feel like my hand is being stabbed, it's because she's battling in her epic quest to save her world from evil. Something in the universe just got our nervous systems crossed, and that's how she's able to survive where others wouldn't. I wish her well! ^_^

One of the most important things I have learned over the course of my disease is that there's no use making excuses. People can't see my illness, so they don't understand what I'm going through. My disease makes me unreliable, lazy, upset, and distracted. My experience is debilitating pain, fatigue, anxiety and despair about what I'm going through, and preoccupation with managing my symptoms. But that doesn't change what it looks like from the outside. I could say it's not my fault, which is absolutely true, but that just looks like whining and excuses.

I have another option, though. I can OWN it. Yeah, I have to sit a lot. Yeah, I stroll along the sidewalk. Yes, I'm a princess and will ask for the comfortable chair from you. Nah, I don't really want to do much. Sitting and talking is perfect for me. I would fit in so well in more the relaxed, Mediterranean-type cultures.

On days when I start to get depressed about not working, I imagine that I'm one of those idle liberated aristocratic girls like in an Agatha Christie mystery. It's perfectly expected for me to take an leisurely breakfast and not leave the house until ten. Then it is customary to take lunch with friends at the club (my favorite coffee shop) and discuss events. Supper and then return home to work on my writing. Like in Cold Comfort Farm, "I hope to publish a novel when I'm 50."

On days when I'm really fatigued, I pretend that I'm a Southern Belle---a sweet delicate flower. It's perfectly fine for me to sit for long stretches, sipping iced tea and fanning myself. Running around is for children. The adults sit on the porch and hold polite conversation. It does me no good to despair over my limitations. Trying to push past them only leads to disaster. It's more responsible for me to say, "No, thank you." Yes, that means that I'm not up to the activity levels of my peers. I'm working on that. But in the meantime, it's so much better to make peace with it.

So I make up little stories. I know they're not true. But they allow me to behave in a way that is more noble and polite. It allows me to maintain my mood despite what I'm struggling with. It allows me to imagine that everything is just fine even within my limitations. I can choose who I want to be and make it awesome, instead of seeing my disease as someone I'm forced to be. It gives my behavior value. It takes away the shame and stigma for me.

What do you do to build your self image in dark times?

Entitled to be late??

2011-10-06T13:22:00.005-06:00

This is a repost of a comment I made over at KevinMD.com. I read that blog partially because I know I'm going to read stuff that upsets me. It helps me focus my own thoughts for this blog. But this guy got my blood boiling, I have to admit. My heart is still racing as I type this, I'm so angry. Dr. Stewart Segal insists, "A doctor cannot be on time and take care of your needs." Wow... Now, I'm only an armchair 'psychologist,' but doesn't that sound like medical narcissism? Here is my comment.

My ex-husband was in the Navy. Whenever we traveled, we always planned to show up at home a full 36 hours before he had to report back to the base. Sure, the flight may only be 4 hours, but a lot of stuff can go wrong from point A to point B. The only excusable reasons for not showing up on time are: you're in the hospital, you're dead, or there's a national crisis (9/11).

You guys *know* you deal with crisis situations. That's in your job description. They tell you in school. They train you for it. You do your residencies in ERs.

What I want to know is that if all doctors are chronically late, why not PLAN for that. Sure you can't plan for the emergencies, but what about scheduling HOUR appointments instead of 15 minute ones? Sure that may mean there are block of free time where you don't *need* the full 60 minutes... But all y'all hope for the best every day without planning for the worst. That seems foolish to me.

And I think it's absolutely correct for me to demand that of my professionals. You get higher social status, you get better paid, better treated... It's not unreasonable to hold you responsible for your schedule. If any GED kid in the military can pull it off, why can't you?

The thing that I hate about that article is if you boil it down, essentially he's saying, "Oh, it's okay for me to hurt you because it's not really me hurting you, it's these other emergencies. It's not my fault. I don't need to take responsibility."

And you can try to blame this song and dance of "NOT MY FAULT!" on modern litigation, except that same attitude existed in 1847!!! [Medical Arrogance and the Effects of Prejudice]

This is a problem with DOCTORS. It always has been. And the sooner they wake up to that fact, the sooner the healing process can start.

Have I earned treatment?

2011-10-05T23:20:00.000-06:00

I was good. I was compliant. I went on less prednisone. I suffered the expected complications. Now the test results have come back and my doctor has struck out. My adrenal glands were supposed to double their output. They only increased output by 30%. That, with the other tests, is proof positive of my pituitary disease. The BIG question now is, will my doctor change her tune? Will she admit I was right?

I'm surprised. I expected my cortisol stim test to come three months from now. I was supplied three months of lower-dose prednisone. I have a sneaking suspicion this is because she expected to be able to take me off my prednisone. I suspect she was assuming she had to be right. I really hope she doesn't react poorly to the egg on her face.

I'm hopeful she'll now be able listen and provide care. But if she already sees me as a "problem patient," I may be screwed out of care regardless of proof. It's happened to me before. This time I kept my mouth shut. I let her have her beliefs. I went through the tests as she asked. But I did lay the groundwork for my back-up plan. Hope for the best; plan for the worst.

I've been in contact with the hospital administration. I've been very polite in expressing my displeasure. I was conservative in my protests about the unreturned phone calls and lost orders. The administration is going to make sure that I get contacted in a timely manner. I said 72 hours after the test results are posted. They agreed that's completely reasonable. I expressed my concern about not being believed, and the possibility of switching to a different doctor if this doesn't work out. They're on standby in case this goes south.

But I want to give my doctor a chance. I want to give her the opportunity to correct her mistakes. I don't need my doctors to be right all the time. That's unrealistic! But I do expect them to follow the evidence. I do expect them to change their theories to fit the facts. if she does that, I'm good. If she doesn't... Well, then it's time to vote with my feet.

The thing I'm worried about is that most endocrinologists, to their own admission, don't know how to deal well with pituitary issues; they're relatively rare. When it comes to my disease, the neuroendocrinologist has the technical skills and training I need. Finding someone else who can handle my disease is going to be tricky. And I fear trying to find a doctor at the same hospital may be drawing water from an already poisoned well. I know doctors, nurses and staff gossip about their patients. It's a possibility an in-house switch would do me no good.

These are the possibilities for the future I see: the good, the bad, and the ugly. But regardless of the outcome, I'll continue to work my way back to wellness with the best attitude I can muster. It's just a question of how much work that's gonna take.

Time to stop worrying about it. The clock is ticking. She has 72 hours starting from noon today (11am, really, but what's an hour between friends?). Until then, I will occupy myself with other interests.

Cross your fingers for me.

The Pros & Cons of Doctor-Patient Interactions

2011-10-04T18:21:00.010-06:00

There are a lot of ways doctors are primed against patients. Frequently these are professional, psychological studies on "difficult patients." The problem is when you're a hammer, you can start to see everything as a nail. Doctors are problem-solvers. They expect to deal with problems at every patient encounter. However, it's not fair to see every patient interaction as a problem. Here's a list of pros & cons (and cons & cons) for patients when they deal with doctors.

Pro- you take responsibility for your health.
Con- "too many doctors encourage---or even demand---that [you] identify them (the doctor) as the sole source and authority for [your] medical care."

Pro- you're well educated on your disease and you know what you need based on what you've been through in the past.
Con- you get labeled as an "entitled demander" who is expected to "become hostile"... "if the doctor does question the demand."

Pro- you're vigilant about your symptoms, keeping records of how you're doing so the doctor can have a complete documentation of your disease.
Con- "Patients deemed difficult included those with more than five symptoms..."

Con- you have symptoms that are difficult to treat.
Con- "It is much easier to say, "She is such a difficult patient! She is never happy with her care!" than to say, "I feel angry and helpless when I see her because it seems like nothing improves her symptoms!""

Con- you have symptoms that can't be seen on a scan or proven with a blood test.
Con- you're seen as a patient "who repeatedly complain[s] about symptoms for which no physical cause can be found"

Con- you have chronic pain.
Con- "Treatment of chronic pain puts doctors in a no win situation."

Just because a patient comes with problems doesn't mean the patient is a problem.

Recognition is essential for patients

2011-09-30T12:10:00.004-06:00

I'm really looking forward to Ellen's series on, Expert Answer: When friends & family don’t understand migraine. From the introduction: “I am a breast cancer survivor. Compared to my experience with chronic Migraine, breast cancer was a breeze. All the information is out there. Everyone understands cancer and its treatment and has compassion for the patient. The stigma of it is gone. The therapy ends eventually – there is a light at the end of the tunnel. The pain of the disease is treated vigorously. Migraine is nothing like breast cancer. The pain is so much worse and usually undertreated, nobody understands the disease or the patients, the stigma is overwhelming and there is no light at the end of the tunnel because our disease doesn’t go away.”

I had a funny moment out with my friends at coffee. We had a new person introduced to our group, who happened to be getting his PhD in neuroscience. I asked him if he understood the pituitary, and confirmed it. I told him what I had and he expressed genuine alarm and concern. He launched into a series of questions that I demurely answered for him (just the anterior pituitary, not the disease that makes you thirsty all the time, thank God). But it wasn't so much this gentleman's reaction that was so amazing. What was amazing is that all my other friend's faces had fallen to the floor.

They hadn't known just how serious it was. These were folks who only knew me A.D. (after disability). And the more this guy asked me questions, and the more impressed he grew, the more I could feel the respect for me in the room grow.

I work really hard to make this look good. I can't do it all the time every day, but I can pull off for an afternoon. I can pull it off for doctors appointments. I've learned a lot of streamlining techniques for chores through the years. I'm like a race horse: I'm good in short, powerful bursts. But then I need lots of rest. They don't see the struggle in the down time. I hide it. Not that I'm ashamed. I just know it's a lot to handle, and not everyone is up to that. It's hard to be a caregiver. Hallmark doesn't have a card section for: "Get well, maybe?" As a society, we really don't know how to handle it.

I embrace that I don't look as sick as I am. I've learned not to blame anyone for not understanding. It never helps to try to explain. It looks like boasting. It doesn't help to get angry. That just makes me miserable and difficult to be around. It sure doesn't help to sulk or get involved in self-pity. Yeah, I've got one hell of a disease. How about them Cardinals? What about that epic night in baseball??

I wanna get credit for how well I'm doing, not for how awful I've got it. So I look forward to what this series is going to say. Even at this point in the game, I can still use all the tips and tricks I can get communicating my disease to others.

Still no orders, but made a friend "inside"

2011-09-29T08:34:00.004-06:00

I waited a week after the debacle of last week. I called the infusion center. They were very flustered and tried to blame the referring system at first: new computer referral system, can't find you in the computer, blah, blah. But then I interrupted her with the magic words, "Look, I don't think this is your fault." Immediately, she slowed down and listened. We were able to find my file. Yes, there are still no orders for me. But now she is going to call the doctor's office herself to see what is going on.

I'm trying very hard not to think about why this is happening. I've got to leave it a mystery. My conclusions are only going to make me angry. And who knows? Maybe my new friend can straighten this whole thing out.

Moral of the story? Being kind and understanding towards staff really works. And because I waited a full week, that looks good in my favor. The doctor's office plenty of time to straighten this out. I'm not just complaining... I'm complaining with just cause. That won me an ally today.

[UPDATE 11a]
The friend inside came through!!! I got a call from a nurse in my doctor's office. The orders should be processed today. I can call early next week if I haven't heard anything.

[Update 1p]
FINALLY got a call from the doctor herself. She still expects my cortisol to turn out fine and that I'll be able to stop my prednisone. We'll see....

Dear Doctors, please don't make your job my job...

2011-09-23T14:23:00.007-06:00

As I type this, I am going through horrible symptoms because of my doctor-ordered drop in my daily prednisone. I get dizzy every time I stand, my hands are shaking, I'm freezing cold on a balmy 80 degree day, and my colon has defected on me. Upon my last visit, I was told to call the infusion center to schedule my test if I hadn't been called in two weeks. Well, I called and discovered there are no orders. Now it becomes my job to call the nurse line to call the doctor to get the orders in to schedule an appointment. It becomes my job to keep on top of this to make sure it gets done so my doctor can get the information she needs. Really??

I hear all the time from doctors blogs and medical journals about how much a problem "patient compliance" is. What about how non-compliant doctors are? I took actions in good faith. I'm subjecting myself to an increase in symptoms because that's the only way to get a fair test on the pituitary-adrenal axis. I get that. But I would like good faith in return. If you say your going to order a test, order the test. My job should not be to make sure you do your job.

That just makes me lose faith in the system that I need. That makes me lose trust in my doctor's ability to take care of me. I have to wonder if I did something wrong, some subtle body language, something... that made me receive this kind of poor treatment. And if I have to worry about it happening in the future.

It's not fair that I should have to do this. It's not fair that it becomes a crisis on my part due to procrastination on your part. But I have to do it or I don't get treated. I am your hostage.

You're worried about liability. I'm worried about my ability to live. When I'm sick, I'm frightened. When you screw up it could cost you your job. But when you screw up it can cost me my life! Respect that, please. When I have to do your job for you, that only scares me more! What else are you going to miss when I'm not looking?? What else could you forget to do??

Please, try to see it from my point of view. Step out of your troubles for a moment and put yourself in my shoes. You know what looks bad from your standpoint. Don't you think I could say the same? Take responsibility for your practice. Have a little integrity: say what you mean and mean what you say. Hold up to your end of the deal.

That's fair, right?

And apologies go a long way....

Suck it up, Princess...

2011-09-21T16:20:00.004-06:00

Wanna make your disease laugh? Tell it your plans. It's only been three days on one less milligram of prednisone, but already I'm in trouble. My digestion is not good. Each morning I wake up with terrible gut pain that saps all the energy from me. The exhaustion has stretched my morning routine from one hour to three. My sinuses and breathing are worse. And I'm cold. All. The. Time. My mood, reasonably, has tanked.

My mantra is: "Suck it up, Princess. The only way out is through."

It's frustrating and sad to have to go through this. You would think that the labs and tests from the other doctors would mean something. You would think that since all the other test came back negative, we'd want to rethink the theory. You'd think a doctor would want to avoid making me sicker. And you'd be wrong.

The world is not fair and yelling and screaming doesn't make things any better. It's a waste of energy that I don't have. I can't afford the luxury of anger, even if I am right. Challenging the authority of the doctor will get the door slammed in my face fast.

I also have to do this so I can prove to her I will "follow doctor's orders." It's a stupid game, but my doctors need to know that I stick by my promises even when no one is watching. I've got to play by their rules to get the treatment I need, even if that means unnecessary suffering.

My dad is a lawyer who does criminal defense cases. He's told me what being on probation is like. A probation officer can go so far as to demand a woman stop wearing make-up. They'll jerk you around and make your life miserable on purpose. It's all a test. Can you obey the rules? Or are you going to be sneaky and selfish?

I don't like being treated like I'm on probation just because I'm seeking help from medical professionals. But there are. No. Other. Options. I've got to have treatment so I've gotta suck this up, pull up my Big Girl pants, and soldier through.

And I've got to do it calmly and without hysteria, which is really difficult when symptoms flair. Even though it's completely reasonable for me to be upset over what I'm going through, I can't behave that way. No one can see what my disease is doing to me. When I get upset, it appears to be over nothing. Being emotional only makes me look like a drama queen.

I know I will be proven right. I can remember my calm and not be upset because I know the truth will come out. I can be patient with my doctor's bad theories and mistaken beliefs. She's gonna have to eat crow eventually. And if I want her to admit her mistake, I need to show her that I won't blow up at her. That means dealing with the current situation with dignity.

I am better than this disease. I am better than my doctors skepticism. I can do this. I can get through this to get the proper care.

And I can make it look awesome.

Chronic Illness Cat (repost)

2011-09-20T23:43:00.002-06:00

I don't often repost stuff because it feels like slacking off in my own writing duties. But this made my night...

Chronic Illness Cat (The Meme You'll Thank Me For) [warning, adult language]

There are a number on there that hit home and are real gems: "Rent. Groceries. Medication. Choose TWO." And I've had doctors who didn't know how to spell my meds before, too. lol

That about sums it up nicely.

Care for the caregivers...

2011-09-17T22:00:00.000-06:00

On the eve of the close of National Invisible Chronic Illness Week, I'd like to focus instead on caregivers. Whether you are a spouse, significant other, adult child or parent caring for a chronically ill person, your partner's disease will take a toll on you too. Relationships can be difficult when both partners are healthy. A chronic illness can make a relationship much more stressful. We know the person who is ill needs support, but caregivers need support too. Extra burdens, physical and psychological, are shared by both partners. And they are often different burdens even though they share the same source. This is for the caregivers.

The first thing to realize is: There is no negotiating with a disease. We can't control or cajole it. But we can contribute to it for good or bad, depending on how we react to it. The key thing to remember is not to take personally what the disease causes. It's like any other force of nature: the tsunami, the hurricane, the disease... None of them care what kind of havoc they sow in our lives. It's sad that it happens, but what can we do? Our only option is to pick up the pieces of our shattered lives and try to make something new. When we can see the disease as something that isn't malicious or evil, we can gain a sense of constructive peace over the situation. It's like any other hardship. We put our shoulder to the wheel and try to get through as best we can.

The second is something to remember, like a mantra. Remember that you are under duress. Remember this is a marathon, not a sprint. We need to take extra special care of ourselves. We don't have a lot of the luxuries and freedoms that other people have. The extra work is physically draining. We need to practice patience regularly. This is psychologically draining. Exhaustion can make tempers shorten and that's never helpful.

We need to make sure we give ourselves attention and care so we then can give care. Extra rest and relaxation are necessary, but not always an option. Activities we used to enjoy as stress release may not be as available as they were before. Luckily, we live in an age where stress is common, so there are several resources available to learn about coping mechanisms. But one that I would like to emphasize is quiet meditation. It doesn't have to be anything fancy; just sit and do nothing for a little while with no distractions. Find a peaceful place and just relax for a little while. It doesn't have to be long. Ten minutes here or there can be just the pause we need.

We also need to be careful we don't volunteer for unnecessary stress. Being a caregiver can be more than a full-time job. Taking on other unnecessary responsibilities may not be the best thing. If an outside activity brings joy and a sense of accomplishment with that responsibility, that's great. But if the outside responsibilities are draining with little return, it's probably a good idea to stop. Stress can be exciting, but an illness makes enough excitement on it's own. We need to make sure our activities outside of care giving enhance our lives.

Detachment, in my experience, is a wonderful tool for dealing with stressful situations. When I am able to detach emotionally from the situation at hand, I can make more clear-headed decisions. The difficulty is, in the extreme situations that a chronic illness makes, it can be nearly impossible to hold back an emotional response at that moment. In those times, if possible, we need to allow ourselves extra time for making decisions. Often the situation won't allow that. When it's a crisis, it's a crisis. So we just do the best we can, and work on forgiveness towards ourselves afterwards for any mistakes.

Forgiveness is something we will need to practice a lot. A disease will expose all our shortcomings. If there is an area where we are weak, it will show it. Whether it's bad decision processes, limits on our coping skills, old childhood wounds, physical limitations, what-have-you, the situations the disease creates makes those more likely to appear. We must remember we are only human. St. Augustine said: "I err, therefore I am." Our mistakes are a part of life. We can also forgive the situation for making us so off our guard (going back to not taking the disease personally) and in that way deepen our forgiveness of ourselves and others. It's difficult to be at our best when under duress. We work to forgive ourselves, try to learn from it, and try to do better next time.

I strongly suggest to not be shy of support groups. We're not going to have all the answers. It's common to be overwhelmed. You are not alone. This doesn't mean you have to jump into and participate in a community. There are many online forums where people in our situation have gone before and left their experience, strength & hope. A keyword search may be all you need to see a conversation dealing with your situation. And if you do want to participate, you can post your own questions and receive personal responses. Sometimes a stranger can have exactly what we need to hear.

I hope these have been helpful. If you have any other suggestions, feel free to add them in the comments section.

Good luck.

How do you tell a doctor you don't want to comply with their wishes?

2011-09-15T14:22:00.001-06:00

My new doctor expected to show me how my claims for Autoimmune Hypophysitis were misguided. That hasn't happened. She told me that my AH was probably the fault of previous doctors giving me steroids when they didn't realize it, and that created the illusion of AH. She told me that my hypothyroidism was most likely primary autoimmune hypothyroidism, and that my swollen thyroid was evidence of that. One problem: the tests don't support any of her claims.

I do have hypothyroidism and I'm on the correct amount of medication for it. And the tests show that I'm not even borderline autoimmune thyroiditis. My results were less than *half* the minimum for a positive result. It's secondary hypothyroidism, not primary like she predicted. My thyroid problem is pituitary.

I have normal calcium, sodium, potassium, etc. My Vitamin D & B12 levels are fine. Nothing she claims to be really wrong with me has panned out. None of her predictions have come true. And now I don't want to continue with her suggested course of action. That's reasonable, right? But I don't know how to say "I don't wanna do that" without it being a challenge to her "authority."

She wants me to come off my prednisone. That seems like an extremely dangerous plan now. If my problems were not what I claimed, my adrenal glands should start to come back to life. But that's not terribly likely given the current evidence. What's more likely is that as I come off my prednisone, I'll start to get sicker and sicker, and eventually suffer an adrenal crash (which, alarmingly, can lead to coma and death). Um.... That's not something I'd like to risk just to prove a point that's already been proven by other doctors and labs.

The thing I worry about is if I say, "I'm not comfortable with this plan," she'll turn around and say, "I'm not comfortable treating you." It wouldn't be the first time.

I left a message for the doctor to call me.

My First Migraine

2011-09-03T21:32:00.001-06:00

Ellen Schnakenberg of Migraine.com posted an interesting migraine fact the other day: Most migraineurs have vivid memories of our first migraine.

"It's a shocking occurrance. Our lives change in an instant," she says.

For me it was the same. And when I saw her comment, the flood of memories swallowed me whole.

It was 1987 and my parents had taken us on a historical tour of half a dozen southern U.S. states, following a carefully mapped trail my father had made to show us Civil War landmarks along the way. Part of out vacation was a weekend in New Orleans. I remember it was the night my Dad wanted to see the blues bands play. Everyone was excited. Unfortunately, my father insisted on going into the clubs, even though the music was so loud on the street you had to shout to hear.

It wasn't even ten minutes of standing in that noise that I couldn't bear it anymore. My head was pounding. I wasn't surprised. I didn't think it unusual. But we migraineurs don't tend to think well when we have a migraine, and this was no exception for me either. What I didn't realize was I was a teenager complaining to my parents that their music was too loud. Yeah... that should have been my first clue.

On the way back to our hotel, lights got too bright for me even though it was night on the street. I closed my eyes and had my parents lead my by the arm. When they would tell me of an obstacle, I'd open my eyes briefly to move over or around it, then back to voluntary blindness.

When we made it back to the hotel room, my mother, unfortunately decided to put on perfume. The smell doubled me over in nausea. They opened the windows to air the room out, but it permeated everywhere. I wanted to hide under the covers from the smell and the light, but the heat of the blankets made the nausea worse and everything was off balance. She washed it off, but it was no help.

By that point, I also had a pillow wrapped around my head because normal conversation-level talking sounded like cannon blasts. Thankfully, it wasn't much later I was able to pass out.

I was 15.

Do you have any stories where illness changed your life in an instant?

(Thank you to Ellen for inspiring this post. Ellen works for Migraine.com as a researcher, patient advocate and educator. She also worked as a community leader for WEGO Health, helping amplify the voices of other Health Activists. Visit to Migraine.com to see more of Ellen's posts.)

Sjogren's Syndrome stops powerhouse Venus Williams

2011-09-01T15:43:00.001-06:00

BBC Sports News recently reported that: American Venus Williams is out of the US Open after withdrawing from her match against Sabine Lisicki due to illness. Specifically, Sjogren's Syndrome (pronounced SHOW-grins): the autoimmune disease once thought rare, but now considered one of the most common autoimmune diseases to date. Unfortunately, most people (including doctors) consider the disease to be nothing more than dry eyes and mouth. While these are common complaints of the disease, it's effects are much worse. And though I wouldn't wish this disease on anyone, I'm honored to have Venus Williams as my spokesperson. If this disease can stop a powerhouse like her, it's obviously no joke.

Sjogren's Syndrome is an autoimmune disease that affects the moisture producing membranes of the body. That's why dry mouth and eyes are common complaints. But it also affects the digestive track, the lungs, the sinuses, and all of your skin just for starters. Sjogren's patients generally don't sweat much, and that makes them highly susceptible to heat stroke. Additionally, it attacks the moisture production in muscles, tendons, and joints which can cause severe pain and MS-like nerve symptoms (tingling, burning, numbness, etc.). The New York times featured the story of a woman with Sjogren's in The Doctor of Last Resort, whose symptoms had made it impossible for her to walk up the steps in her house of over a year. It's one hell of a disease, and it is estimated to affect up to 4% or 270 million people world-wide. By comparison, that's the entire US population, minus California.

Autoimmune diseases are when the body's immune system mistakenly identifies some normal aspect of our body as an "enemy combatant." It starts producing antibodies (i.e., against the body) and attacking healthy cells. Illness results, and depending on which type of autoimmune disease you have, it can kill you. Usually preceded by steady decline that slowly robs the patient of the ability to thrive.

I salute you, Venus Williams. You make this look awesome...

T4 hormone replacement inadequate in patients with hypothyroidism

2011-08-31T22:34:00.003-06:00

There's a new article proving* that T4 hormone replacement (Levothyroxine) is inadequate for producing T3 in the body. Popular believe among doctors was that because T4 is converted into T3 in the cells of the body, and not produced by the thyroid, that all you needed to replace was T4. Not so, says a paper published in the Journal for Clinical Endocrinol Metabolism. The big payoffs for adding T3? Well, weight loss and lower cholesterol, "without detected differences in cardiovascular function or insulin sensitivity."

Damn. Probably shouldn't have let my old doctor talk me into stop taking it years back. Time to call the new one.

Sigh...

*(double-blind study)

Feeling "high" - the positives...

2011-08-30T14:26:00.003-06:00

This is scary for me, because this is a topic where I can easily be judged harshly. But I feel this is important to talk about. I take several medications for my pain, both narcotic and non-narcotic. Both have side effects that would be considered desirable to people who are looking for an escape from reality. These side-effects, I have to admit, are desirable to me as well. But my motives are very different. Unfortunately motives and intentions aren't something that can be verified with a test. It's an act of trust every time a doctor hands over a medication that can create a "high." I enjoy those side effects, I won't lie. But let me tell you why...

I woke up this morning and I was feeling terrible. I took my non-narcotic on schedule like I was supposed to, but it wasn't enough. I had to change clothes because the elastic, even though it wasn't tight, was painful on my skin. The weight of the pants was hurting my hips and lower back even thought they were a light cotton knit. My hands and feet were aching and it was difficult to walk and type. I took a narcotic pain pill and waited for the pain to subside.

Normally, the medication just evens me out. If I limit my activity, I can manage. But this time, the medication actually made me feel better than my "normal" levels (slightly better than house-bound). I walked outside and notices that I felt a slight floating feeling and my skin was tingling pleasantly. It took me by surpise: I was a little buzzed. I was amazed. I was joyful. I was actually feeling a high.

I know what you're thinking. But the high wasn't my goal...

I don't do movement for fun. I do movement for purpose. I don't have enough spoons to waste them on "silly" activities. But this time it could be different. The high told me that I had freedom do to MORE. If I'm high, I've got extra medication in my system to burn. Physical tasks that are normally impossible for me I can now do. Ironically, it's safer for me to take "risks" with my body.

So I DANCED.

It felt sooooooooooooooo good. I was able to enjoy my body. I was able to enjoy movement freely. I didn't have to ask myself, "Is this going to hurt?" I knew from the high that it wouldn't. I could move like Jagger. Later, I didn't have to hold the railing walking down the stairs. I could skip down them. And I did. Spontaneously and without a second thought. The freedom is magical. I'm not in it for the high. I'm in it for what the high lets me do.

I love to do physical exercise, cardio-vascular fitness, cooking, sculpture, and all sorts of other projects. But I just can't. Not because I have some sort of catastrophic thinking. I can't because I have too many things I have to do. I need to be able to take care of my responsibilities. If it falls outside of that, I can't be wasting spoons on it. If I do an activity for fun, it can rob me of my ability to do something I have to do. That's not good.

I want to live up to my obligations. So the fun gets cut. The exercise gets cut. The art gets cut. I rely on quick food rather than cooking a real meal. I take the short-cuts I have to, so that I don't undercut what's really important: keeping a roof over my head, clothes on my back, a working car in the driveway and food in my belly.

And I don't know how to explain that to my doctors. I know the DEA is all to willing to yank their license and take away their livelihood. I've had doctors that have left the pain profession because the pressure was too much. I don't want to put my doctors in that position, but honestly, I am undermedicated for pain. I need the big guns. But who is willing to put their life career on the line for a stranger? Not many.

So I live as best I can. And I relish the days that I feel the "high." Because then I can move without thinking. Without worrying. Without wondering how much this is going to cost me later. Because it won't. I can engage with others and join with them instead of just watching from the sidelines. I can be a part of---an active participant in life again.

I can feel normal again for a little while.

Yeah, I'm high. And I'm a better, more effective person because of it. Getting high doesn't automatically turn people into sloppy addicts, sponging off of everyone around them chasing a fix. I'm chasing responsibility. I'm chasing functionality. The high helps me get there.

How is high bad then?

My pain & my strength

2011-08-24T13:56:00.000-06:00

Imagine you're in a locked in a closet with a whole bunch of flies buzzing around. And you're naked. When the flies land on your skin, you act immediately and quickly to get them off. You wave your arms to keep them from getting close to landing or if they buzz too close to somewhere sensitive like your face. But even if none have landed on you, you're in a constant heightened state of anticipation and reaction. The buzz around annoyingly and you can find no peace, other than just passing out.

Now imagine that that constant buzzing is your body. It's not external, it's internal. And when one of those "flies" decides to "land" on the skin, it's not just highly agitating, but sharply painful. That's what my pain is like. I can tell where my pain is likely to manifest based on where my body is currently buzzing, but that's just a guess. I can ignore the buzzing to a certain extent. It's certainly easier when there's something to distract me. But that only works on the buzzing, not the "landings."

The other way my pain will manifest is in a "Princess and the Pea" way. If I stand on my feet for more than a few minutes, it feels like I've been working an eight hour shift on my feet. If I try to use chop sticks for a meal instead of a fork, my hand go from operational to "I just gave 6 hour-long massage sessions" by the end of the meal. It's as though my body wants to crank every sensation to 11 (when the volume is only supposed to go to 10).

Ironically, this detriment of mine has made my highly competitive in other areas. When me and my friends go to high altitude, they slow down and have a really difficult time maintaining a steady pace. I on the other hand know how to keep going. I'm so used to operating when I feel like crap that pace and push through. They'll loose all steam and nap frequently. I don't need to. We're equally tired by the end of the weekend, but over all, I manage better.

That all changes once we get back down from the mountains: they get energy where I don't recover... But it's comforting to know that I do have skills because of my illness that others don't. It's really empowering to have some area of my life where I excel exactly because I'm broken. That there is value in my brokenness that has made me better than "normal" people.

I have a deep well of strength and endurance that doesn't get to shine a lot under normal circumstances. So it's easy for me to forget that it's there. I remember what "normal" was like, and I want so badly to get back there. My efforts, because of my pain, so frequently fall short. The buzzing interferes with my ability to enjoy anything. There is so little freedom. But I've learned, through my endurance, how to do remarkably well, considering. The fact that I can even get close to normal is pretty amazing.

And if somehow we could find a way to make the flies disappear and make my body less of a Princess... If my normal beats "normal" at ten thousand feet... Wow. I would be able to do mind-blowing feats of endurance. Logically then it must follow that if the only thing that's stopping me is my disease, I'm pretty amazing right now. Because I haven't let it stop me completely. And it should. Normal people would rest under my circumstances. But I endure.

That's awesome.

Got into CU Endocrinology!!!

2011-08-24T00:44:00.000-06:00

And here I had scheduled an appointment in my calendar to check who had received records. !@*#, that was fast! Last time it took over a year to get me in to a neuroendocrinologist. Apparently when you have documentation to support the fact that you're a medical unicorn, the right people do pay attention. My appointment is for Sept 9th. Wow.

I haven't even begun treatment (which may, in fact, be its own nightmare, but who cares!) and already I can feel the relief of hope being in sight. And the not-so-noble side of me grins widely at the number of plates of crow I get to serve. I am among the partakers, because as I've said before, I never thought I'd see this in my lifetime.

Holy moley... The receptionist even sounded excited to leave me a voice mail. Last time I talked to them it was an absolute "NO!" to seeing one of their GPs. Oh, how the tides have turned!!

And to everyone who ever accused me of malingering or negative attention seeking... I give you the bird.

It's delicious.

Different Diagnoses - More than 100 medical disorders can masquerade as psychological conditions

2011-08-09T16:40:00.001-06:00

I would argue that because it's become so "easy" to medicate anxiety and depression thanks to Big Pharma, that doctors frequently don't even consider the two symptoms. In some cases, I've run across doctors who want to blame my disease on the anxiety or depression rather than the other way around. There seems to be this pervasive magical belief that "bad thinking can make you sick..." Or that if there's a psychological component involved at all, well, now that you can check the little box on the diagnosis form, job done! Ship the patient to the head shrinker. The doctor's rush to fulfill his/her professional paperwork obligations, leaves them overlooking their patient obligations of a full investigation.

Confusing Medical Ailments With Mental Illness "An elderly woman's sudden depression turns out to be a side effect of her high blood-pressure medication.

A new mother's exhaustion and disinterest in her baby seem like postpartum depression—but actually signal a postpartum thyroid imbalance that medication can correct.

A middle-aged manager has angry outbursts at work and frequently feels "ready to explode." A brain scan reveals temporal-lobe seizures, a type of epilepsy that can be treated with surgery or medication.

More than 100 medical disorders can masquerade as psychological conditions, according to Harvard psychiatrist Barbara Schildkrout, who cited these examples among others in "Unmasking Psychological Symptoms," a book aimed at helping therapists broaden their diagnostic skills.

Studies have suggested that medical conditions may cause mental-health issues in as many as 25% of psychiatric patients and contribute to them in more than 75%.

[From ]

If doctors were criminal investigators, they won't last past their first trial. In criminal proceedings, you're not allowed to just present a theory and then find the evidence to support that theory. All evidence must be collected, and all theories of the crime must be explored (even the ones that look like dead ends). Just finding a culprit isn't enough. You've got to prove it was that baddie rather than any of the other possible baddies out there.

But this would take an investment of time that doctors just don't seem to have. I don't know why that's the case... whether it's a doctor shortage, or bad time management within the system, or some sort of crappy incentives that drive our doctors to act this way. Whatever it is, patients are ending up the victims. We need to change this.

"Doctors overestimate how much information they give patients..."

2011-08-08T15:31:00.004-06:00

Infographics rock....

Many thanks to "Mind the Gap - Patient Physician Communication" for this one.

Dear Doctors: "It feels good to laugh and cry!"

2011-07-28T21:18:00.001-06:00

This was the experience of a Psychologist at Stanford after going under hypnosis and going through an activity to tear down the walls of time. "Phil further realized that the world of academia suppresses the public show of emotion in favor of cool rationality." (The Time Paradox, Philip Lombardo) THIS is what I believe is wrong with the medical profession. And I believe it can be improved.

If you're not allowed to laugh and cry, then every interaction with another human being is about keeping distance. This is not conducive to building relationships. Every medical professional is so serious that out of the scores of doctors I've had, only two I know of cracked a joke or a smile. Heck, if a doctor just acted like he was happy to meet me, that would be a HUGE improvement to patient-doctor relations.

But so often doctors think they have to maintain this stodgy air of sophistication and learning as part of their professional persona. That is alienating to me as a patient, and frankly when you stand on that pedestal, it means there's a long way to fall.

Can we bring customer service to the doctor's visit, please? It's actually a skill that needs to be learned. There's a special way of going into the present moment, setting all worries aside, and greeting a person like they're an old friend, regardless of what baggage they carry through the door. That is customer service.

I had to learn it several ways for dealing with all sorts of customers (tentative, egocentric, angry, hostile, etc.). It's not something that comes naturally just by being a good person. It's doesn't come with "breeding" or manners, either. Law School is one case where they are hostile towards you and you have to remain calm and polite, so that you can learn to keep your cool with a hostile judge. It's a skill.

I think if we brought the laughter and tears back... If we allowed doctors to step down from those pedestals and be human... If they weren't forced by a culture of professionalism to be aloof... If we instructed our doctors in customer service... Perhaps then we could see the doctor-patient relationship improve across the board for all specialties and practices.

Here's to the dream... ;^)

My idea of the perfect doctor's visit...

2011-07-16T15:39:00.003-06:00

What I would like is a more innocent, humble approach. Something like:

Hey [Name]! [Sits comfortably] How are you today? [Takes notes. Summarizes vocally for patient.] What are you in for? [Takes notes. Summarizes vocally for patient.] Okay, you have [these] symptoms, [these] diagnoses, you're on [these] pills and undergoing [this] treatment/therapy. And what are you doing at home? [Takes notes. Summarizes vocally for patient.]

Well, let's look at what does what and see if we can discover a little more of what's going on. Okay, now what's your primary concern? [Takes notes. Summarizes vocally for patient.] Based on all of this, here's what I see. This is what I think might work and why. Does that match up with what you see here? Does that sound like a good idea to you?

Alright, here are my written instructions for you. You should notice [this and this], and take [these and these] precautions. Here's what I would like you to do at home. If you notice anything that worries you, or that you can't meet these expectations, you can always call our nurse line. If it worries our nurse, they'll call me immediately. Here's a card with that number. Keep track of your progress for me and report back to me in [time] if all goes well. Do you have any questions for me? [Note of patient's questions. Questions summarized & answered.]

Are you comfortable with this plan? [If not, see if a second opinion is wanted and if they know how to go about getting one.]

Great, I'll see you back in [time]. Hang in there and I hope it helps!

That is how I want my doctors to act... like they know they're human. Then it wouldn't be so far to fall if they're wrong! Trust wouldn't be shattered upon impact.

I dare to dream!

Realizations as Neurontin kicks in...

2011-07-15T14:48:00.000-06:00

Rats... Gonna need Physical Therapy sooner than I thought. I've been couching for so long that I don't have the core muscle strength to sit upright at a desk for long periods anymore. This is a shock to me. I didn't realize I'd gotten this bad. But now that the nerve pain is gone, I can feel the fatigue in my muscles as they strain to keep me upright. I can't maintain good posture for very long. Yikes! This is a problem.

But in the world of good news, I was able to take a shower standing up. I did it without thinking this morning. I haven't been able to do that without the use of prescribed narcotics since 2001. That's an amazing thing. Half way through, when I was reaching for the shampoo, I realized I was reaching down instead of across. I've been standing this whole time... I thought to myself, amazed.

Progress, not perfection. I am reveling in the glory of fewer daily sacrifices.

Ironically, I had a counter-point experience in helping a friend with her pills. She uses an old ice cream jug (with a handle) to hold them all. And I thought, Omg... I use a lunchbox! We both have to have cases for our pills! But it works, so hey... I try to make it look awesome. I have a stylish artistic lunch box (now highly marketed to tourists) that says "Seattle" on it, and no one is ever the wiser. Except that I've told you all now. ^_^

Baby steps... I can do this.

Cutting & Shame

2011-07-14T16:09:00.002-06:00

I had a very important conversation with my cousin today. She recently discovered a close friend of hers uses cutting as a coping mechanism. She was alarmed, as most people would be. And her friend was ashamed, as most people would be. I'd like to offer a different point of view.

As mentioned before^*, we like to think of ourselves as in charge; that our conscious mind is the decision maker. This is far from true. Our conscious mind is more like the rider on an elephant (the subconscious). Sure, we can direct it some, but it's mostly in charge. And when it goes wild, we have little control over our actions.

Cutting is not something to be ashamed of, in my opinion. It's a symptom of a larger issue and should be corrected if possible, but it's not a shameful act. It's a very powerful act of a person desperately trying to bring themselves in charge of their life again. Causing physical pain to oneself is a way to force the body and brain to go into a healing process. I can even tell you the biology.

Serotonin, that feel good chemical, is also the chemical used by the body to do wound healing (along with a host of other chemicals). Serotonin acts as a vasoconstrictor, that is, it makes the blood vessels shrink. This helps in two ways: it slows the loss of blood from the body and it closes access to the smallest blood vessels in the skin so that bacteria can't get in. As a side effect, it also is hugely calming.

The pain of the wound has to match the emotional pain inside. That's normal. What someone is doing is raising the serotonin level physically to be able to block out the emotional pain. That's nothing to be ashamed of. That was actually the scientific theory behind the Occipital Nerve Stimulator: if you can give the nerves enough stimulation (yes, it was painful) it can block the start and formation of the migraine.

When people are cutting, they are intuitively self-healing. That's nothing to be ashamed of. But it does scare people.

We don't need to be afraid of cutting. But it might be a good idea to find a way to create the same healing process in a constructive way. I frequently would use clothe spins when my hands were particularly achey. That pain and pressure of the clothes pins would allow me to relax my hands and stop the cycle for a while.

Similarly, I find that the pressure of water can be very soothing. This is actual science too, as discovered by Temple Grandin. Pressure in the body, like a hug or a bath, has a calming effect. Based on this science they now have hugging machines to help people with conditions like Autisim.

Cutting is something to be concerned about (for health reasons), but cutting is something that is intuitively natural. It's not something to be afraid of.

If you want to help yourself or someone else, I would suggest exploring other avenues to get that same stimulation without causing bodily harm. Be very careful. Look for ways that are safe.

I will admit, I'm a fan of a technique called mummification. I use Vet Wrap, designed for sprained ankles. It's a self sticking bandage that causes slight compression when used correctly. Wrapping this around my whole body is the most relaxing sensation I have ever felt. I was able to reach a wonderful meditative state where I could look at any issue I had calmly and without fear or dread. I'll borrow the quote from the Order of the Garter: Honi soit qui mal y pense (Old French: "shame upon him who thinks evil upon it", or "evil to him who evil thinks").

Life is rough and frequently overwhelming. It's okay that we have limits. We're allowed to take care of ourselves in safe and constructive ways, unusual though they may be. The point is we're trying to manage our elephant as best we can. We're trying to get through hell. Life is like that sometimes, and that's nothing to be ashamed of. It happens to everyone, no exception.

The key to walking through hell is: Don't stop.

^*There is a TED talk that mentions this Elephant/Rider theory: Stefan Sagmeister: 7 rules for making more happiness. Go to time marker 3:30 if you want to skip ahead.

Neurontin Redux

2011-07-13T15:32:00.003-06:00

So my new GP has started me on Neurontin 300mg 3xD (I hate three times a day---so difficult to remember that middle dose, but I can do it)**. I wasn't expecting it, but since my first dose, I'm now worried about sleepiness. My body is telling me it's nappy nap time, and honestly, I haven't been awake that long. And I've had a Red Bull. You do the math.

I've taken Neurontin before for my migraines. That time, it was ineffective until I got up to 2700mg a day (that's close to three grams), then it did the strange thing of working for 3 days and then not working for 3 days. That continued for three months until it quit entirely, and I had one episode where I told my husband to hide the guns. Part of me was in utter despair, the other part was like, "what the hell? life is good right now... nothing's really wrong... why do I feel like this?" Then it stopped working, I came off it, and my feelings returned to normal. Yikes! Luckily, I'm not at that level now.

I'm gonna have to call the pharmacist and ask if the side effects will fade and if so, how long it will take. He told me earlier today that it should be effective for my neuropathic pain in about 7-14 days (but my doctor would probably want to keep me on it longer before giving up if I found it didn't work).

I'm not so worried about it not working now. It's working. Nappy time.

But will it work on what we want it to work on without making me Sleeping Beauty? Jury's still out.

Phone call. Then nap. lol

[Update]

Well, it's not gonna work on the migraines, that's for sure! Surprisingly, I love what it's doing for my mood. It's giving me longer time to think clearly before I open my mouth. I'll stay on it for that reason alone, regardless of what it does for my pain! Hopefully that desire won't complicate pain treatment down the road. Like my body isn't a black box enough... Ha! (Black box is a programming term where you're testing a program for functionality, but have no idea what's going on underneath.)

At Microsoft, we had a saying, "you're turning a pig into a porcupine..." The story was: say you've got a three-legged pig. You build a prosthetic leg. It works okay, but you want to do better. You add another prosthetic leg, and another, and another until the pig looks like a porcupine. It's the idea that just adding stuff to fix a problem can end up being a problem of its own.

So, lots of stuff to deal with (not being able to drive is not constructive to my life, but that may pass) and lots of stuff to think about.

My pharmacy is in my corner. I hope to bring this doctor in as well, but it's a courtship. He's only met me once and has now had two phone calls from me. One to get me on the medication (he forgot) and now one saying essentially, "Whoa, nelly! Too much!" I can only hope he sees me as responsible and not a bother. I don't want to be overwhelimg with my information, but I don't want to be seen as withholding either. I also want to use my medication safely and wisely.

If I were into recreational loopiness, this would be pretty awesome. Me, I'd rather pay for the amusement park ride. I am not of the opinion that my body is a chemical playground. No thank you. One, I'm fragile. Two, time and a place: having a beer at a birthday or wine at Thanksgiving and Christmas, sure. Maybe a margarita with 'the girls' after a particularly stressful week. But not all the time. Especially since I need to keep a close eye on my symptoms. I like and need to have my wits about me.

**Doc has lowered me to 2xD. Awesome.

Until then. Nap time.

The rapacious randomness...

2011-07-11T20:30:00.000-06:00

One thing I positively loathe about my disease is just how effing random it is. Not just day to day, but hour to hour. It makes planning a nightmare. Sure, I can set dates. That's just a promise. Doesn't mean when the time comes I have the resources to meet that promise.

When I wake up in the morning, I stake stock immediately. How did I wake up? Was it natural or jarring? Was there urgency because I'm not feeling well? Was it difficult to get up because I'm not feeling well? How do I feel emotionally? Am I depressed, anxious, or neutral? How's the temperature? Am I hot or cold? Can I tell where my hands and feet are?

I then have about an hour, two hour window before my body wakes up. Most people start producing cortisol a few hours before they wake up. It builds in your system and just about the time your starving for breakfast is when it peaks. I wake up by adrenaline. I sleep very deeply and have difficulty waking up. But eventually my body realizes it's in distress and I'll wake up with a bolt. That sends me into a rush to the medicine cabinet where I take my prednisone, thyroid med, flornef (another steroid) and anti-nausea med.

I absolutely require the antinausea med because quite frequently my stomach decides to atrophy and just not digest things. When that happens, my meds don't get into my system. I'll get shakey but will feel like I'm moving through molasses. It's difficult for me to think and make decisions. I get really, really cold to where I still need a hot shower on a summer's day to warm up. My hands and feet will feel like ice to the touch (one of my common symptoms as a kid). My heart will beat irregularly and my blood pressure bottoms.

Emotionally, it feels like the world is ending. Which isn't too unreasonable in my mind... Because in terms of physical health, it's completely true. If my body isn't producing cortisol and I don't take my prednisone, I could die. I've got an emergency shot I carry with me at all times in my purse. If I start vomiting or experience trauma (car accident, etc), my adrenal glands are supposed to produce cortisol like crazy. Mine can't. It comes in a shot.

After that two hour window has passed, I take stock again. How am I now? Do I have pain, and if so where's my pain? Can I eat yet? What's safe to eat? With food, I can generally tell by smell and by thought: if my stomach flip-flops, that's a no. Not no doesn't always mean yes, however. I can still get sick on something that sounded like a good idea at the time. That can turn a morning into an afternoon really fast.

If I'm somewhat bodily stable, meaning I've eaten, pills are in my system and working and my pain isn't slowing me down, I can then make or keep plans of the day. I usually do things short notice, as I don't like broken promises on my watch. Doctors appointments are another story and I'll push as much as I can, but I always make afternoon appointments to give me that wiggle room for self-maintenance.

I watch the weather religiously, as I know storms and pressure changes lay me out. I get migraines that turn me into a zombie. And/or I get body pain that makes me feel like my body is filled with sand, or hand and foot pain that feels like lightning and burning.

I try to schedule appointments around the weather, but I'm not always so fortunate. This spring and summer monsoon in Denver has kicked my @$$ I've become isolated and out of touch with my local, in-real-life friends, and that's miserable to me. I'm partially an introvert, but I'm an extrovert too. I love small gatherings of arm-chair philosophists and political advocates. Facebook helps, but it's no substitute for real people.

I'm literally a fair-weather friend: it the weather isn't good, I can't be there. People think they understand, but so often they don't get that I feel and before during and after the storms have passed. Most folks tend to think along the lines that I'm made out of salt: as long as it's not raining I shouldn't melt, right. Not quite, unfortunately. Those red and blue fronts that sweep through an area, the switch-out of high and low pressure systems... I feel all that physically. Its the roller-coaster of randomness I have to ride.

It reminds me of the Police song:

First to fall over when the atmosphere is less than perfect
Your sensibilities are shaken by the slightest defect
You get so dizzy you've been walking in a straight line
You live you life like a canary in a coal mine
Canary in a coal mine...

What else can I do? It's my reality. I'm working to make it better, but in the meantime, it's sill a wild ride.

"Hurry up & wait..."

2011-07-10T23:49:00.001-06:00

As a former military wife, I'm completely familiar with the concept of "hurry up and wait." There's a flurry of activity, then a long, grinding, wait period as things behind the scenes fall into place. It can be agonizing. Things don't happen in Hollywood time. Just because there's a cure doesn't eliminate the process. Doesn't change the business cycle in the slightest.

Still, it's really difficult to keep that perspective when my suffering is RIGHT NOW. It's difficult for people on the outside to understand because they can't see the pain and distress that's causing my urgency. I have to give myself mantras that "I'm not going to worry about X until Tuesday" (or whatever) so that I don't make the waiting worse.

Even with the promise of a cure, there are hoops to jump through. I've been particularly non-active with my health care for a long time because there was no point. Now that there is, it's still a grind to get to the solution.

What's so frustrating is there's absolutely nothing I can do. I feel like a little kid staring at all the presents under the Christmas tree but I've still got hours until my parents wake up. All that glittering promise and I can't have any yet.

The adult side of me is cautious. The cure is steroids and an immunosuppressants. I've already been in and out of the hospital before with the antibiotic resistant form of staph: MRSA. They nearly lost me once. That's not something I care to repeat. Being on an immunosupressant is going to make me susceptible to everything contagious. And I already have a low resistance to such things. That terrifies me, especially with no financial means of arranging a clean house.

Before I knew there was a cure, I could trudge along just enduring best I could. Now I've got to throw myself back into the process again. The potential outcome is completely worth it. But the road there is fraught with peril. So much can happen between now and then. I continually remind myself to take it one day at a time. Sometimes, one moment at a time.

The key to walking through hell is, don't stop. I've found the sign marked "Exit." Now let's see if I can get there. I have a week to wait to hear about my referral to a the only adult neuroendocrinologist for 3 states. Then I get to wait for an appointment, which could take from 9 months to a year (if last time is at all telling). Pituitary tumors come first, and with only one neuroendocrinologist in the state... well... there's gonna be a wait.

I've just gotta keep stubborning it out in the meantime...

"The fair is in Puyallup..."

2011-07-05T18:06:00.001-06:00

That was the saying of a great couples counselor my mother and I went to in Seattle. What he was implying was that this is an unjust world, and the only fair you'll see is the County Fair. I bring this up because I've already noticed the beginnings of survivors guilt in me.

I'd gotten used to the idea of being unlucky. I had to. That was reality for a while. I couldn't allow myself to hope. It made the despair worse. It shattered my faith in the God of my youth. And no, that hasn't been restored because the truth is millions suffer around the world every day still. Billions have died throughout the ages waiting for their cure. Some young, some old. Of every color imaginable. Disease is completely unbiased. Oh, sure there are tendencies... But there are also plenty of us Medical Unicorns too.

The fair is in Puyallup. My faith is in Time. And that faith, though agonizingly difficult at times---yes, I've been suicidal... had to tell my husband to hide the guns once---my faith in time has paid off. Sometimes things got worse, but the wheel turns for everyone, high and low born alike. We all have moments of joy. We all have moments of despair. We all have dreams. And no one has ever gotten *everything* they wanted (we were all kids once). No one gets through life unscathed. No one is immortal. Hearts break.

But they heal too.

I'm never going to be the same Pam that I was. There's no goin' back after something like this. But it hasn't been all bad. As a gamer geek, I used to grumble that the GM (God) was only letting me spend experience points (my time & energy) on Wisdom and non one Constitution (health). That is to say, I've grown incredibly wise in a short amount of time, but my body has suffered tremendously for it.

This path is not the way!!! If you can get there more comfortably, I sure as hell advise it. It's still gonna take me years to recover from the psychological damage.

I may choose to do a Shoah (Jewish tradition of testimony by survivors of tragedy) on a more broad scale, once. Otherwise I'm gonna stick to this and live a quite life. I have a chance to close the door on this. I have no qualms doing that. I can turn my back on it. Move forward again.

I don't feel trapped anymore. I can't dance like I want to yet, but I can feel in my soul that it's possible again. I've got a *future* to consider, and that's a weird feeling. It's new.

I have the treatment to go through, and recovery from that. I'll still have to play things by ear for a few years yet. And thank goodness because I have no idea what to do with myself! But I get to think about it again. I wouldn't before because it hurt too much. I knew my wants were just coming out as what I lost. I couldn't conceive of what it would be like on the other side. And I was absolutely right not to guess!

I made the mistake before of thinking I knew what chronic pain was. I had no idea. I'm going to brag for just one tinsy second... I have empirical proof as to the insane level of my migraines. I was in a scientific study for the Occipital Nerve Stimulator. Everyone in the study (according to my doctors) used the device between 4 and 8. That's milliamps of current applied directly to the nerves. I was the only one in the study who used the device at 20. My migraines would go past that. They gave me an extra charging device because I'd drain the batteries so fast.

And still, there was one time I had to back on narcotics. It was during a hideous wind storm in Seattle. I'd run my device full blast for a week. But my muscles started seizing until one morning I woke up vomiting and I couldn't stop. During a small window I put in a call to my doctor and she rushed a prescription. I had an authorized friend get the script to the pharmacy and the medication to me. I meanwhile relaxed in a hot shower, in god-awful pain, but no longer vomiting. (At that time I ran my medications on a night schedule for this very problem. It was more regular than it was safe to think I could stomach pills in the morning. That changed with the addition of medical marijuana last year.) So yes, I can safely say my pain was pretty epic. I won't say it's the worst, because I haven't yet passed out from pain, but I've certainly been unable to pass out due to pain. I think Hyperbole and a Half would put that somewhere around "I am actively being mauled by a bear." Only the bear was my own immune system attacking my brain. Yeehaw!

I don't know about you, but I sure as $#!+ want someone to shoot the bear. That's not drug seeking. That's pain avoiding. But from the outside, when no one else can see the bear, it looks exactly the same. *sad sigh*

It's not fair that I got this disease. It's not fair that I have a chance to get rid of it either. And I have NO IDEA what I'm going to do with this second chance. Lol

A quiet life of simple blessings sounds DELICIOUS.

Can azathioprine fix me???

2011-07-02T18:38:00.002-06:00

This is insanely hopeful. I actually have a reason to go back to my doctors beyond managed care!!!!!

Recurrent autoimmune hypophysitis successfully treated with glucocorticoids plus azathioprine: a report of three cases;

I have something to fight for... oh, man, this sets new wind in my sails. I guess it was a wise decision to take that break! ^_^

Azathioprine is kind of a scary drug, as it may increase my risk to infection, and I'm already a high-risk category, but it's worth the chance at a cure!

This article was just posted a week ago. Such good news!!!

Need to take a break for a while...

2011-06-30T20:47:00.000-06:00

Feel free to comment here with your email if you'd like to stay in touch. I just need to hermit for a while and tend to some self-care.

Thanks,
The Management ;^*

Medication merry-go-round...

2011-06-28T17:32:00.001-06:00

I have a sneaking suspicion that one of my medications has stopped working. This is something that happens pretty frequently for me for whatever reason. Maybe it's my Scottish liver, I don't know. But I'll reach a point where we can't go any higher on a medication due to side-effects or toxicity and it's just not working anymore. Then I have to ramp down slowly off whatever it is I was taking, including going through withdrawals. Once that medication is out of my system, we can then try a new medication and see if it works.

I slowly ramp up on it, reserving 24 hours for any new medication to see how it effects me. I don't drive. I just hermit at home. We generally stay at that dosage level for a week (sometimes longer, depending on the medication). During this time, I see how well the drug works. If it works, I stay at that dosage level for as long as I can.

If/when it doesn't work at that dosage level, we ramp up to the next level as before. I do the same 24 hours, because my reaction the first time may bow be the same as the second or third ramp-up. We continue this process until the medication starts working or we top out.
Sometimes, I can take a medication all the way to the maximum dosage with no effect. Surprisingly fentanyl, a *very* strong narcotic, has absolutely no effect on me (patch or lollipop). Sometimes, I hit a really nasty side effect that means I have to come off the medication immediately. Anything that affects norepinepherin (Effexor) gives me a racing heart beat.

I don't like medication. I'd rather just be able to take care of my needs without the use of chemicals. But my body doesn't always make the necessary hormones for me to stay alive. So, pills it is. But even though it's been over a decade, I still kinda resent them. Prednisone tastes nasty. However, I like it even less when a pill that formally gave me a sense of normal suddenly up and quits.

And it's not just that it stops working. It's that it stops working but my body now considers it part of the environment. So to come off the drug means to suffer the symptoms the medications was supposed to address while going through medication withdrawal. Yeah. It's not fun. Coming off Effexor meant depression, panic attacks, and the sensation that someone was bouncing a tiny rubber ball on the inside of my skull. It was the most disconcerting sensation. Coming off of my thyroid medication means /six months/ of symptoms as my body slowly rids itself of excess.

Also, it's always scary trying a new medication. Gabatril was a particularly scary one for me. For some strange reason, that medication cause the muscles in my eyes to go bezerk, causing my eyes to spin wildly. I could focus them briefly, which would allow myself to see myself in the mirror, but once they started spinning, I couldn't look in the mirror to see. I actually had no idea it was going on until I was taken to my next doctor's appointment. (My driver was too polite to comment.)

With memories like Effexor and Gabatril (to name only two), it makes it that much more difficult each time it comes to a new drug. Medications *scare* me, and rightly so. I'm not so innocent or naïve to think that putting a pharmaceutical in my body, whether FDA approved or not, won't do me great harm. I'm so allergic to sulphas I require an ER visit if I'm accidentally given one. Vencomyacin nearly killed me and that was in a hospital setting.

Life is a fragile, fragile thing and nobody understands that better than someone with a chronic illness. Medications are produced and prescribed because they have shown to have some positive effect on their assigned problem. But that doesn't mean we understand *everything* they do. New studies are always coming out. Too often I have been on some cutting-edge drug and had some strange side effect only to be told, "Well, that can't be possible. It's not in the literature!" Only to find out at a later date that, sure enough, that side effect is in the new published report. In the meantime, my doctor thinks I'm either lying or crazy. Sometimes a doctor trusts what I report, but that's a rare thing in my experience.

It's reasonable for me to not trust medications at this point. They're dangerous. That's why they're given under the care and guidance of a doctor and dispensed by a pharmacist. I will put my body in the care of my doctors and try what they suggest. If I'm uncomfortable, I can express that. I can work with my doctor to ensure safeguards are in place. I will treat my medications with the healthy (pardon the pun) respect the deserve.

And someday, the merry go round might even stop!