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I just got diagnosed with a serious disease. It’s in the early stages because I caught it myself, and I pushed for tests.

This is the second autoimmune disease I’ve been diagnosed with in the last four years. This one is much more serious.

My autoimmunity started after I suffered from acute PTSD for a year after rape and abuse by a man I dated.

I’ve also been in a really unhappy relationship for the past two years that did a number on my self-esteem. It took until last night to realize it wasn’t just being on the spectrum that made my ex-boyfriend spectacularly hurtful, seemingly without meaning to be, but his active resentment of women, after being deeply hurt by his ex-wife. He also has huge difficulty articulating his emotions, so he didn’t know how to say he was scared or unsure what he wanted, or felt we were moving fast; or anything else. He never knows how to articulate his feelings of confusion; instead, he takes it out on me. He’s also very sweet and loves me, but frankly, the way he hurt me when we dated, after a very sweet friendship in which he was very kind and also romantic- something he later denied- the particular way he made me feel bad, about my looks, was really inexcusable, knowing what I’d just been through, and what a tremendous risk I was taking, trusting him. And he knew.

Now, in a cruel coincidence, part of this disease is affecting my looks, specifically my face. It can even cause brain lesions, though that’s unusual. The systemic kind- which I do have the symptoms of, and is why I’ve been sick, when my Hashimoto’s seems to be getting better- can make you really, really sick, and even be fatal. Or it could be minor, and it will be fine.

I may have to take immunosuppressants. I am worried about that, what with the side effects and also the pandemic.

I am worried about how much hard work I have to do soon to survive. What if I’m not feeling well?

I’m very angry with the rapist. He has also raped or otherwise abused or assaulted many other women. Nothing has been done about him. He’s still walking around a free man, like most of his brethren.

Meanwhile, now PTSD is understood as a brain/body disease. It raises cytokines considerably, causing inflammation in the body, predisposing the sufferer to all sorts of diseases, particularly autoimmune diseases and cancer.

I’m pretty angry, and more than a little discouraged.

I could some support, advice, encouragement, commiseration, or anything positive or uplifting, really.

I am looking forward to the future. I am moving, and making some big changes in my life right now. I want to try to be positive.

I am also staying on top of my tests and healthcare, and doing everything I can to reverse this disease.

Please help me be positive! I want to recover from this with no harm done.

I just got diagnosed with a serious disease. It’s in the early stages because I caught it myself, and I pushed for tests. This is the second autoimmune disease I’ve been diagnosed with in the last four years. This one is much more serious. My autoimmunity started after I suffered from acute PTSD for a year after rape and abuse by a man I dated. I’ve also been in a really unhappy relationship for the past two years that did a number on my self-esteem. It took until last night to realize it wasn’t just being on the spectrum that made my ex-boyfriend spectacularly hurtful, seemingly without meaning to be, but his active resentment of women, after being deeply hurt by his ex-wife. He also has huge difficulty articulating his emotions, so he didn’t know how to say he was scared or unsure what he wanted, or felt we were moving fast; or anything else. He never knows how to articulate his feelings of confusion; instead, he takes it out on me. He’s also very sweet and loves me, but frankly, the way he hurt me when we dated, after a very sweet friendship in which he was very kind and also romantic- something he later denied- the particular way he made me feel bad, about my looks, was really inexcusable, knowing what I’d just been through, and what a tremendous risk I was taking, trusting him. And he knew. Now, in a cruel coincidence, part of this disease is affecting my looks, specifically my face. It can even cause brain lesions, though that’s unusual. The systemic kind- which I do have the symptoms of, and is why I’ve been sick, when my Hashimoto’s seems to be getting better- can make you really, really sick, and even be fatal. Or it could be minor, and it will be fine. I may have to take immunosuppressants. I am worried about that, what with the side effects and also the pandemic. I am worried about how much hard work I have to do soon to survive. What if I’m not feeling well? I’m very angry with the rapist. He has also raped or otherwise abused or assaulted many other women. Nothing has been done about him. He’s still walking around a free man, like most of his brethren. Meanwhile, now PTSD is understood as a brain/body disease. It raises cytokines considerably, causing inflammation in the body, predisposing the sufferer to all sorts of diseases, particularly autoimmune diseases and cancer. I’m pretty angry, and more than a little discouraged. I could some support, advice, encouragement, commiseration, or anything positive or uplifting, really. I am looking forward to the future. I am moving, and making some big changes in my life right now. I want to try to be positive. I am also staying on top of my tests and healthcare, and doing everything I can to reverse this disease. Please help me be positive! I want to recover from this with no harm done.

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Part 2 comment

I feel really foolish about my realization. It's so obvious in retrospect, and I was so fucking naive to believe a word of the things my ex-partner so strongly professed about his feelings or opinions. I knew they were the opposite- I could tell by observing his behaviors- and I was right. He was very attracted to me, had very strong feelings for me, liked me romantically when we were friends, and was just being a fucking idiot. My stupidity was in not realizing how his mean behavior and saying the opposite of everything he actually felt was about him in no way being in any shape for a relationship with anyone at all. I should have listened and observed better. I really wanted to love someone. It was really stupid, though.

Anyway, I internalized his bullshit, and was incredibly depressed this entire time. It wrecked my self-esteem. He's tried to make up for it. He must feel like a massive asshole.

When we got here, I immediately got on top of my healthcare. This is all such a fucked up story.

We came here last June. I won't say where. A Southwestern or Midwestern state. I bought all our furniture and made our apartment so nice! I was tutoring around fifteen private students. I got a following when I lived in my hometown (where I'd returned- to be near my parents; what a terrible idea that was- after living and teaching at a university in Mexico). I got a bunch of private students who kept giving my name to others, and ended up teaching a bunch of people. At first they only wanted ESL, as they are all Korean or Korean-American. Then soon they all wanted to learn writing, both the ESL students and also the parents wanted me to teach their kids, so soon I had a whole bunch of students. I was teaching them online last fall. I was also biking regularly, and managing my Hashimoto's really well (in fact, my antibodies dropped so much my thyroid began working again, and I dropped an entire point in TSH level in a month, and got high thyroid from my medication, which was not fun).

So, my first experience with a doctor here, a Russian woman: I told her I'd moved here with my bf, I had some chronic conditions to manage, I wanted a referral to an endocrinologist for Hashimoto's, to a gynecologist for a colposcopy after another colposcopy six months before, to see if I'd need a further procedure, and also to a psychiatrist, to manage the medications I was still taking, a low dose of lamotrigine for mood stabilizing and amitryptiline for sleep. I also told her I used medical marijuana- legal here, and which I got- for sleep. I preferred it to the amitryptiline, which I didn't need anymore, and made me too groggy the next day if I didn't take it regularly (and the dry mouth was a fairly severe side effect of taking it regularly).

She immediately snapped at me that she didn't believe in medical marijuana. I thought you're supposed to be able to tell your doctor about any drug use? At all? Without them going all judgy? And this was medical marijuana for sleep assistance for someone with PTSD and bipolar 2.

I had sent ahead all my medical records from my last state- I have always been good about getting to doctors, despite medical trauma as a child, and hating the doctor; I know it's important, and I'm responsible about my healthcare- and she hadn't looked at them, and claimed they weren't there (they were, as someone else told me later).

She said she'd do a Pap smear right then. She'd refer me to an endocrinologist on my word, but not a gynecologist? I'd just told her I had PTSD. I was extremely uncomfortable but felt blindsided and didn't really know how to refuse. She was rough and brusque, and the whole thing was extremely unpleasant. Of course it came back that I needed a colposcopy, as I'd said. I later needed a LEEP procedure. (That seems to be almost all clear now).

She told me "good luck with that" about finding a psychiatrist on Medicaid, and refused to explain further. She said she'd refer me to a social worker.

The social worker seemed to do a quick Google search, and then emailed me a bunch of places that were not accepting Medicaid patients. I tried to go through my insurance provider, but their search engine was terrible (I realized they showed providers that took Medicaid patients, and new patients, but not new Medicaid patients). It turns out here psychiatrists can only take a certain percentage of their patients on Medicaid, and can't accept anymore. I'm guessing due to the pandemic, the number of people on Medicaid, and the number of people who needed psychiatrists, shot up. I must have called over a dozen clinics.

My partner was being awful to me during this time. He was going through a severe life crisis as a result of the pandemic, too. Nevertheless. (He feels terribly guilty about not realizing what was going on with me- how I could not find a psychiatrist, and it was a big problem- but he'd never say anything directly to me. He muttered something guiltily about it once). I tried my best to be there for him, and I was doing well personally, but he was not, and was in many ways blaming or taking it out on me and building walls, and I was really sad about that. Things might be very different now, as he did recover after finally taking my advice- after 6 months!- and quitting his insane job with his insane boss, and chalking up three years of his life's work as a loss, and getting a better job with short hours (not 12 or 14 hour days, 6 or 8 hour days), that would pay more, and value him more, and be organized and a real company- and of course he found that right away, and has already gotten a raise and is doing great. I was sticking it out until he was feeling better- and then he wanted to leave me- right around when he finally quit, which I was so looking forward to- because we were sad, and he blamed me- not all that, his fucking burnout and insane work situation- for it? When I furnished and decorated our apartment, cooked for us when I was up to it, and was as kind to him as I could be in such a situation? Anyway.

The social worker said "Dr. Brusque Russian is putting in a call to the in-house psychiatrist." I figured he didn't mean for me to be treated there. Why wouldn't she have told me- referred me- on our first visit? Instead of muttering "good luck finding a psychiatrist on Medicaid?"

And everyone else said no, there were no psychiatrists through this, the largest healthcare system (through the university hospital), for patients on Medicaid.

So, I decided to go off the lamotrigine. I had already quit the amitryptiline, and was sleeping well with a very low dose of THC/CBD gummies. I was waking up, feeling great, physically. (I need to remember this, as I had the beginnings of scleroderma then, too- lowering my stress and exercise, and good sleep, will really help). I thought it irresponsible to continue taking a psych drug without a psychiatrist. I did not want to go back to a primary care physician at all, not after my other experience. I of course switched PCPs after that, and I also eventually- as a result of this happening- made a complaint about her. I decided not to make it formal; I'm actually reconsidering that, given all the health fallout in the end. Anyway.

I had gone off 100 mg lamotrigine in the past, the twice I'd taken it for under a year, with no problem. Most of my life I have not been on medication. I was not sure of my bipolar 2 diagnosis (now I have been reevaluated, and had my diagnosis confirmed). I was doing really well, and thought I would be fine. So I stopped taking it.

i got every single withdrawal symptom there is. I think it was because I'd been taking it for three years. It wrecked my brain. I got two weeks of migraines, followed by fainting spells, followed by psychosis. I broke up with my boyfriend and moved into my office. I was not in a good place, and suicidal at times. This lasted about three weeks or a month. I started to get better, then somehow during this my thyroid decided to start working, and I got high thyroid, and couldn't sleep for three or four days. This is when the bad symptoms of scleroderma started.

Later, I asked for a celiac test, to make sure I'm actually gluten sensitive (I have non-celiac gluten sensitivity- pre-celiac, probably; or induced by autoimmunity. It does make me sick, and give me an allergic reaction. I've been off gluten for a year and a half now, back off it again, of course). I had to explain to my endocrinologist that yes, I had to be eating gluten for a few weeks before the celiac test. I later realized it still wasn't done right, but by reading about non-celiac gluten sensitivity vs. celiac, I found the differential diagnosis via the two symptoms- hives and wheezing- that celiac doesn't cause, but NCGS does (otherwise the presenting symptoms are very similar).