Would I trade the last 10 years?

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...

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

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

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.

[BUTTON REMOVED]
[March 3, 2012]

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

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...

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

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

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?

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.