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Fri, Apr. 12th, 2013, 02:17 pm
The Reason Why I Cry

Months of anticipation, hope, wasted. I wanted so badly for this rheumatology appointment to go well. It seemed simple enough. I wanted an MRI of my hands, which would put to rest once and for all whether or not I have rheumatoid arthritis. And if all of my symptoms are simply from the fibromyalgia, I want to be treated by a doctor who is either familiar with fibromyalgia/chronic fatigue, or who at least is open to trying new and innovative treatment plans with me. I've been reading a lot, there are tons of treatment modalities and studies, all with varying levels of success. I'm willing to try them all, if necessary, and see what works for me. I'd like a doctor, someone with biochem/medical knowledge, who can help me understand these studies and steer me away from the more obvious quack ideas (that I might not catch considering I never even took high school chemistry), and point out possible things to look out for or monitor, and of course who is willing to write a few prescriptions with off-label uses.

Well, I didn't get any of that. They are re-running the blood tests, and they did at least do an x-ray of my hands. The blood tests came back negative before, 80% of people with rheumatoid arthritis will test positive, the other 20% will not. So I'm sure they'll still be negative. I wanted an MRI because studies indicate that an MRI will show RA damage 4-5 years earlier than an x-ray. It's much more sensitive and much more accurate than an x-ray. So even if this x-ray shows no damage, it could just be that the damage isn't advanced enough yet to appear. I didn't even care about the bloodwork; I just felt like an MRI of my hands would have satisfied me sufficiently that RA could be totally taken off the table, and then I'd be happy to concentrate on my illness as solely fibromyalgia/CFS/ME.

They also told me that even though rheumatologists were the ones who usually diagnosed fibromyalgia, they generally didn't treat it, that it was the realm of your primary care provider. Which is a bunch of bullshit. Just because they don't treat it, to say that rheumatologists in general don't treat it was bunk. And then the doctor told me that they've found the approved medications for fibro to only be effective for a limited time period and had too many side-effects, that the treatment for fibro was physical therapy and that I should get 'lots of exercise' otherwise the if I didn't I would just have more and more pain.

I wanted to cry at this point. She obviously didn't treat fibromyalgia, and she didn't seem to understand this illness at all. The reason most CFS sufferers are exercise-intolerant is because it damages your heart, they have some form of orthostatic intolerance and low cardiac output, that's why they get so tired after exercise. You can't just tell someone with chronic fatigue to go out and get plenty of exercise and that will make them feel all better. I did good; I didn't break down in tears.

She had no experience with anyone who was chronically depressed, and when questioning me about my treatment for depression I think she thought of it like treatment for high cholesterol. As in, so long as I went to my psychiatrist and got meds every month, my depression was this thing that was magically under control and so my pain symptoms weren't depression. Towards the end of the appointment, she asked me who had run the original tests for RA, and when I told her, she seemed surprised. I got the impression that to her, I'd been slandering some fellow doctor that she thought was a good doctor, and she'd just found out that person I'd been bad-mouthing was someone who she respected. I don't care, I still say the first doctor was an idiot with a terrible bedside manner who is so burned out from practicing medicine that she shouldn't even BE practicing it anymore. That's my opinion, and I'm holding fast to it.

She saw the old scars on my arms and asked me about them, and I told her I'd been a cutter, and she acted like she'd never heard of such a thing, and seemed to confuse it with being suicidal, as if cuts on the back of my arms had been some sort of suicide attempt and did I need to be committed right then and there. And of course, trying to explain to someone that while you were chronically suicidal but that cutting is not in any way a suicidal gesture is tricky. For that matter, trying to explain to non-psychiatric medical practitioners (and even a few shrinks who should know better) what it means to be chronically suicidal is touch-and-go anyway. Because being chronically suicidal means always wanting to kill yourself, means always thinking about it, often means always having a plan. It's an obsession thing, more than just a depression then. If you go by a standard checklist, to an untrained doctor it screams, "quick, lock this person in a rubber room!" as if I were going to whip out a straight-razor there in the exam room and go to town slitting my wrists right in front of them.

In fact, she didn't seem to have a clear understanding of the pain-depression connection at all. I'm not sure I do either, but heck, I have the shitty version of a high-school diploma (there were two sorts in my high-school, you could graduate with the 'advanced diploma' which prepped you for college level or higher education, or the 'standard diploma' which was for those just trying to squeak through high school). I had terrible attendance and did no homework, with mostly failing grades. It wasn't because I was dumb, but because I had so much going on at home and so many emotional issues to tackle; and college I knew just wasn't going to happen. So my only math was Algebra I, Geometry, and Consumer Math, along with typing because I took Geometry twice and got a D both times, and you could replace one math class with a business class on the standard diploma for credits. My only science was Earth Science and basic Biology. This lady is an MD, I expect her to know a heck of a lot more about biochemistry and neuronal pathways than I do. I'm sure she does, at a textbook level anyway, but she just felt like a cookie-cutter doctor e.g. here are some symptoms, here are some standard tests we run, here are the results, here are the drugs we give for the conditions these results show, these are the possible side effects, have a nice day.

And I hate, hate, hate being a psychiatric patient dealing with regular medical issues. Of COURSE my mental health affects my physical health, no one is denying that. But I hate the looks, the questions, the immediate judgement and/or pity. In order to pity someone you must first judge them and have them come up wanting. No wonder pity is a 'sin' in Buddhism, it is the antithesis of compassion. She made this 'tsk' noise and shook her head a little, I don't even know if she knew she did it, when I said yes I had attempted suicide in the past. I kind of wanted to haul off and slap her, hard.

So the appointment was a total and complete flop. I can't believe I got out of bed early for this.

And if I ever do get past any of this, or at least a manageable handle on this, I need to finally get my college degree in biology (or maybe biochem), and who knows, maybe become a doctor or at least an ND. People deserve better than this.

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