When we left my little saga in the spring, I was waiting to see a rheumatologist, That was April. It took until late September to do so. Is it me or does it seem like appointments with specialists are even harder to secure now than before the pandemic? My dermatologist is booking nearly 18 months out. That’s insane. I should know. I can’t get back for a follow up with this doctor until January, not by intent but due to there being no slots.
So today, I had my first rheumatology appointment with Dr. Celine Zhou of UPMC. She was very nice, reassuring, listened to me, and did an incredibly thorough exam. My whole body hurts because of all the joints being examined. But in a good way, you know?
The bottom line is that I she doesn’t know, but she is sending me for a “crap load” (her words) of tests to rule out a lot of things she suspects are not the source of my issues. Ruling things out is useful, if exhausting. So off I’ll go to all the tests in the next month or so.
One critical thing I learned today is that there are no doctor in Pittsburgh who specializes in rare lower GI autoimmune disorders. There are some who treat known disorders and some who treat rare musculoskeleta disorders, but not that intersection I need. So that’s helpful to know. It means I may have to go to the Cleveland Clinic or New York or somewhere, but that’s not going to happen (thanks to health insurance rules) until I’ve exhausted every possible option in this region. So that’s basically a lot of running in a spinning wheel until someone decrees “Enough” and stamps “Approved.” I guess. No one seems to know.
I also learned that the issues with my arthritic knee/feet/back pain might be triggered by autoimmune issues along with my sudden skin reaction to face wash we’ve used for years. Weird but true, I guess.
So I’m off to the endocrine system world to rule out stuff, then off to the hematology world to rule out other stuff, and have to swing by opthamology and then maybe I’ll be able to move forward.
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Since I last updated the blog about my struggle, I’ve had some improvements. The Meal Train in the spring really helped me to turn around my apathy toward food. So a genuine thanks to everyone who contributed to that. I’m nowhere near normal yet and still go days without eating, or rather wanting to eat, but sometimes I am fine. I regained about half of the weight I had lost without reason (or trying) so a lot of my clothes sort of fit me or well enough. This also gives me more energy.
I’m nauseated every single day to some degree. My lower GI system is in a constant state of flux. My abdomen is distended which can sometimes actually hurt. I’m still tired quite a bit and/or fatigued. My brain is foggy, but since I had COVID-19 in August, there’s no clear line between those lingering symptoms and this stuff. I’ll have to wait three months to maybe sort that out a bit.
Peppermint oil capsules are precious to me. They calm the nausea. I try to both listen to my body and to ignore the disrupted or distorted things my body/mind are telling me. I listen to my wife when she says to eat. I’ve even cooked a few times.
I’ve realized that I’ve stopped taking selfies earlier this summer. I can’t find any. Is that apathy, self-loathing, or the realization that this is taking a genuine toll on my body that I don’t want to see? Something to consider.
I’m sharing this because I want to remind you that if you are struggling with chronic health symptoms – you deserve to be heard and acknowledged, you deserve to be believed and supported, and you deserve far better than I bet you’ve received from our healthcare system. You don’t have to write it all out on a blog post like me, but please don’t be beaten down to where you don’t advocate for yourself.
If you are not living like this, but know someone who is – please consider offering your support in tangible ways like preparing meals, helping with chores, and just listening without judgment. Don’t offer unsolicited advice. Do offer unsolicited casseroles, childcare, housework, and other concrete things. I cannot begin to thank the people who have been here for me these many years. I’m unsure what comes next, but I am confident that I can navigate it with their support.
