I spent years being called a hypochondriac. A decade ago, as my labs improved, my primary doctor sent me off to a rheumatologist to prove that I was. Three rheumatologists, actually. He was as shocked as I was when they all said I had Fibromyalgia--an actual medical disease. He got pissed off and fired me as his patient. Not because I was sick, but because he was wrong. Ten years later, I find myself sicker and misdiagnosed... again. I don't have Fibromyalgia. And scrambling to make appointments with my other doctors to cover my soon-to-be-fired rheumatologist's prescriptions. My new rheumatologist would have no problem covering all of them, but she has limited office hours and feels comfortable covering only my anti-rheumatic medication. She wants my neurologist to cover my anti-seizure medication and my pain medication, and my primary doctor to cover the rest. She pulled me off my prescription vitamins for now, change how much OTC I take, but wants to keep an eye on my levels. (It's also much cheaper). I go in for more tests. So what do I have? I don't know. But it's definitely not hypocondria, psychosomatic, Chronic Lyme Disease, or Fibromyalgia. She's 99% certain it's autoimmune--probably Sarcoidosis or something similar, or.... a tiny chance it might be lymphoma. I have to go in for a CT scan. She doubts it's lymphoma, but can't completely rule it out until all the tests are done. I know what I'll be doing tomorrow! Still have to wait weeks for the results, though. Unless it is cancer. I'm sure she'd call me in early if it was.
Now I'm left trying to reconcile the past 10 years. I trusted a doctor to take care of me. Instead, he was so determined to make all my symptoms and tests fit into fibromyalgia that he overlooked completely the bigger picture--my health and my picture. Whatever autoimmune disease this is, it could have been caught earlier and treated earlier. It could have been stopped before it reached this point. Autoimmune diseases have a tendency to be degenerative. Many can be controlled with medication, but it doesn't cure or stop. It simply slows it down. So yeah, I'm more than a little pissed at that dismissive asshole. I trusted a medical professional to take care of me for that long (even against my instincts at times because he made sense) and found out he was wrong. And out of the 3 specialists 10 years ago, I chose him and stayed with him because he listened to me. He was the only one who gave me hope of having a normal life in the future--not just with medications, but a combination of therapies based on research--solid, scientific research. And solid scientific research was something I still believe in. I may have been viewed as a dumbass mechanic, but I was always a scientist at heart just as long as I had turned wrenches. (Side note--never underestimate my intelligence--you'll regret it.) I wasted ten years chasing a ghost. But now once I get my prescriptions squared away, I have to request a copy of my entire file for my records (because of disability), THEN I get to fire him. I would love nothing more than to take the official diagnosis when I have it, show up at his office unannounced, and call him out for the arrogant fraud he is. I defended this man. I recommended him to people as an excellent doctor. And for what?
But hey, at least to those scumbags who think I've spent the last decade claiming I have a "fake" disease, using it as an excuse to lay on my ass most of the time to pop pain killers to lay around the house collecting disability while they go to work every day to pay taxes to pay for my disability (which, by the way, SSD is something I paid into, so therefore I EARNED it with the taxes I PAID--not SSI, which is what they're thinking of, but I'm just splitting hairs now) I have a REAL disease. Something degenerative. Something that isn't going away. No, I'm not happy about it, but it is what it is.
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