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Fuckologists

June 30, 2022, I walked out of a rheumatologist's office for the last time. On my way out of the building, I threw the referrals to neuropsychology and dermatology in the trash. For those of you unfamiliar with rheumatologists, they graduated at the bottom of their classes, use a dartboard as a diagnostic tool, and refer you to other "ologists" so they don't have to treat the mysterious disease known as autoimmune disorder.

In the last 18 months, I've been to a gastroenterologist, cardiologist and pulmonologist. I've had chest x-rays, a chest CT (urgently because my sudden onset of shortness of breath could have been a pulmonary embolism), nuclear stress test, pulmonary function tests. I've been to the ER with chest pains and shortness of breath, only to be told I was not, in fact, having a heart attack, so go home. Great. Thanks. Nice to know I'm not dying, only wishing I was. Oh, and blood tests looking for everything from Lupus to systemic inflammation to whateverthefuck disease. All normal. Every. Single. One. Looking at my test results, I'm the picture of health...

...except for feeling like crap 90% of the time with myriad symptoms ranging from shortness of breath, heart palpitations, random pain, debilitating depression and brain fog, suicidal thoughts and anal leakage. (Just kidding on that one. Wanted to see if you were paying attention.)

Last year I sat in one rheumatologist's office and said my lower leg bones were aching like crazy, to the point of keeping me up at night. Her answer, "There are no joints there." Learn that in medical school, did you? If my major symptom wasn't joint pain, she wasn't interested. I didn't go to medical school, but even I know there is much more to autoimmune disorders than joint pain. See previous paragraph.

Every ologist I saw said, "I believe your problem is autoimmune. Go back to your rheumatologist. All your tests are normal and I can't treat you." In April, the earliest appointment available with a new rheumatologist, one who hopefully would look past my joints, was mid-September. When you're miserable, that feels like a lifetime, but I took it. Because I'm wily and creative by nature, I looked at online scheduling, where I found a June 30th appointment and grabbed it. Still two months away, but better than five. Meanwhile I took notes on how I felt and when I felt it, every random symptom that came and went. I wanted to go to the appointment prepared.

I sat in her office with a miniscule drop of hope. I described the heart and lung problems and she looked up my test results and physician notes and said, "Ah, normal." I described the brain fog, depression and suicidal thoughts. I've dealt with depression my whole and tired life. I know what it feels like FOR ME. I know the triggers and I know, mostly, how to cope with it. This is different, I told her. This is acute and debilitating and suffocating. The brain fog makes me unable to function at times. And, oh yeah, it happens ALONG with the joint pain and fatigue and other symptoms of an autoimmune flare. But then, I made the mistake of mentioning that my mother died of Lewy Body Dementia. I could almost see the relief on her face when I realized she was thinking, "WOOHOO, I can pawn her off to psych." Before my thought had time to take hold, she said, "I want to refer you to neuropsychology for screening for dementia." I tried to explain it was episodic, not ongoing, and when my flare went away, so did the brain fog and urge to throw myself in front of a bus.

If I do, in fact, have Lewy Body Dementia as my mother did, I do NOT want to know. There's no cure. All they can do is try to manage symptoms. If I have it, it'll get me soon enough. Knowing about it will only make me obsess about my future of being bedridden and relying on someone to wipe my ass. The day I learn I have it will be the day I plan my final exit. I've spent enough time in therapy dealing with crap my mother gave me. I won't fight LBD, too. 

I mentioned random rashes on my arms and legs, and dandruff and scalp itch that would make a nun cuss. I told her I'd tried every shampoo, ointment, home remedy and skin-healing-magic-dance I could think of. "Well, you need to see dermatology." Orrrrrr...when I tell you that problem is ALSO episodic and coincided with other symptoms that indicated I was having a flare, you could, I dunno, listen, make a connection, do your damn job.

She wouldn't treat me for anything autoimmune until I saw neuropsych and dermatology. When I walked out of her office, vowing to quit seeing doctors unless my eyes are bleeding or my ass is on fire, I felt great. Better than I'd felt in months. Maybe it was letting go of the hope that I can be medically helped. I rode the high of being "flare-free" for almost four months. My thinking was clear, my body did what I asked and I had energy for days.  "Maybe it was just all in my head," I started to think. I had almost convinced myself I was miraculously healthy again. Then one day I woke up hurting in places I hadn't hurt before, and knew a flare was about to knock me out. On the upside, no heart palpitations with this one, and I can manage to walk from one room to another without being winded. This flare is just hand pain that has almost curtailed my crocheting, which I do for a pittance of an income and to keep my anxiety in check. So if crocheting goes away, I'm out. Arm bone pain which is new. Depression and bouts of rage are a nice addition, too. 

I've been on this roller coaster for eight years. I've seen four different rheumatologists along with myriad other ologists. I've been in their office when my hands were noticeably swollen and blood tests that same day showed no inflammation. Ah, my body is a deceptive bitch. I haven't been believed, listened to, or taken seriously. I had one doctor tell me he didn't have time to listen to "all" my symptoms, so which one was life-threatening?  Um, rage, because I really want to beat you with your own fist.  I've written off western doctors and decided to manage the symptoms of flares as they come, because that's all the docs will do anyway. Acupuncture? Maybe.  Extra ibuprofen? Done. Percocet on occasion? Yep. A perk of having a husband dying of cancer is lots of meds in the house. Then there are various strains of herbs that help with pain, anxiety and depression. The one labeled "fukital" is my favorite.



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