Friday, January 27, 2012
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.
Thursday, January 26, 2012
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.
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
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.
OOoo.... if you want to tell me more, Elizabeth, I'm all ears.
Lol! What would you like to hear? :)
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 ;)
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.
Tuesday, January 24, 2012
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...
Sunday, January 22, 2012
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.
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.
Monday, January 16, 2012
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...)
Friday, January 13, 2012
Read the complete article here: How to Be the World's Worst Patient
Thursday, January 12, 2012
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.
Monday, January 9, 2012
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 q**** 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!!*
Sunday, January 8, 2012
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.
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
Saturday, January 7, 2012
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
Friday, January 6, 2012
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 1/10th 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 1/10th 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 4/10th of a second.
More math, the average human reaction time is 3/4 of a second. That’s .750 seconds [7.5/10ths 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.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.
Be a Better Hitter
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
Wednesday, January 4, 2012
"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