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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 3 comment

During this time, my ex-boyfriend took care of me, and was extremely concerned about me. He was also emotionally weird and ambivalent and still kind of mean, because taking care of somebody is intimate and hard when you love them, but you're broken up. We talked about me staying and living apart but trying dating again when I was feeling better. He saw me as a medical patient during this time and said he wouldn't have felt comfortable being romantic with me anyway, because I was so sick. I had to stop tutoring for a while (now they are clamoring for lessons over the summer again- gah! Source of income at least, after my move, which is going to be expensive). His hot/cold behavior didn't help my stress levels, but I couldn't have survived without him.

Finally I'm better from those things, but: I developed a painful dent on my forehead (I first noticed it last summer; it significantly worsened during this stressful time); the right half of my face changed very slightly; I had muscle weakness, trouble swallowing, trouble breathing sometimes, constant heartburn, despite cutting out gluten, dairy, and alcohol; my hands are really hurting, and have swelled up. I look normal. I went- for the second time- to the PCP I got instead (unfortunately a friend of the Russian lady's).

Oh I forgot to say- so I later, doing the rounds to find a psychiatrist again- this was after I came off, then went back on that med, when I realized the disaster of coming off (going back on at full dose was not great, either)- I ended up finding a clinic that was a part of the university medical center, and not only were they accepting new Medicaid patients, but there were psychiatric residents at every clinic who could be part of your integrated managed care plan- collaborating with your other doctors- including the clinic closest to me, where both these PCPs worked.

I made the receptionist repeat this several times. I took down her number. I sent an email to my PCP, asking him if I'd gone through all this when they had psychiatrists available the entire time, giving him the number. He said "I do not think that is the case. I will let you know if I am mistaken." (He'd told me when I saw him he'd prescribe for me but no- no psychiatrist through them). I got a call from a clinic fast-tracking my first appointment.

The interesting part was that the same receptionist called me back whom I'd spoken with the day before. I'd been really friendly, and she'd been really bubbly and friendly then, too. She sounded so scared when she called back. I've almost never heard someone sound so frightened on the call. There was one odd detail: she mentioned the name of Dr. Brusque Russian. I had not mentioned her name to her. She said she'd put the order in. I realized she must have put the order in months before, they probably failed to follow up, and she called to blame them- the only psychiatric clinic taking Medicaid patients, during the pandemic- for this oversight- instead of herself- my primary care physician- for not following up to see if I'd made an appointment with the in-house psychiatrist. And this was after telling me "good luck finding a psychiatrist," not referring me to anyone, not telling me they had them there. And no one else even knew about the program, which had begun only a year before.

I got a psychiatrist at the clinic near my house. I see her virtually anyway. Still, Unbelievable.

That woman lied, and covered her tracks. This blew up my relationship (probably for the best, if I'm being honest), but more importantly, the stress significantly worsened another developing autoimmune disorder. If I'd been working, I would have had to take time off, and risked losing my job. I could have been out on the street. I could have killed myself. The list goes on.

I realized I was dealing with brain damage for about five months from that rash decision- one I never would have made had I had a psychiatrist. I did everything possible to try to be compliant.

So, I go back to my PCP for the second time, about the dent on my forehead, and my other symptoms not explained by my Hashimoto's, which is now under control again. He calls me "paranoid," and then follows up hastily by saying what a "good advocate I am for myself." Then he mentioned my email, that I was upset at what I'd gone through when they'd had psychiatrists the whole time. He said "but you were right- you were right- do you know how bad that is?" (That none of the doctors at the clinic knew). I suppose he didn't know that I called, chewed them out, and told them to send every doctor in every clinic served by the university healthcare system in the city a memo that they have in-house psychiatrists for Medicaid patients who can do managed integrated healthcare, because nobody fucking knew. During the pandemic. That they had this program. So yes, I knew how bad it was.

So then, I lectured him. I said to him, "because of everything you have put me through at this clinic- all my other doctors at the hospital and the other clinics have been great; all my specialists; I mean the providers at this particular clinic- I have not wanted to come back to the doctor, at all. I don't like going to the doctor. I do this to take care of my health, because I have chronic health problems. I keep track of what is happening to my body. I am taking a natural immunosuppressant right now, so this doesn't worsen: tripterigyium wilfordii- Thunder God. 25% of people with one autoimmune disorder have multiple autoimmunity. I have symptoms not explained by my controlled Hashimoto's disease. I have narrowed it down to systemic and coup de sabre scleroderma. I am concerned about the possible involvement of Parry Romberg. I need to stop this now. I made an appointment with a dermatologist for a skin biopsy. You need to order me an MRI. Now."

Maybe not quite as strongly as that.

He made a note of my symptoms, did a full panel of blood tests, including for scleroderma, and antinuclear antibodies, and a full metabolic panel. I tested positive for another unspecified autoimmune disease, and also for scleroderma. It looks like I may have both the systemic and localized kinds.

I still need to get the MRI to find out if it's just connective tissue so far, or any muscle/bone involvement on my forehead. I think it is just skin so far.

You can't see the dent on my forehead yet, not really. The changes to my face are barely noticeable. My fingers are swollen all the time. Otherwise I look normal.

If I reverse this now, I have a chance.

I'm going to do the Autoimmune Protocol diet again, even though it's the hardest diet there is (I did it for six weeks last year, and it cut my TPO antibodies in half. I ask my doctor to test me for TPO antibodies- so I can keep track; supplements have helped bring them down to 230, from over 700 before- and free T3 and T4 as well as TSH, every time).

I'm going to focus on sleep, exercise, diet, and keeping my stress to a minimum. Traveling and seeing my friends and having fun will be really good for me this summer, I think, too.

I'm already taking any supplement which could be of help. I've read a lot of studies, and books. I'm going to do hyperbaric oxygen therapy (I have the money for this from unemployment- I lost my job as an educational therapist due to COVID- which isn't counted when applying for Medicaid, thank God; so I already have gotten healthcare in the state where I'm moving). I'm going to do functional medicine, and see some naturopaths. I'm going to do everything I possibly can to reverse this. I have caught this much earlier than this is usually caught- because I am observant, I know my body, and I am vigilant.

I have survived all this. And I'm about to embark on a challenging adventure, as I have done many times, all over the world, and all on my own.

I have never been wrong about an illness. I always know exactly what is wrong with me. I am probably annoying as hell in the way I push to get treatment. The next thing for me is to buckle down (I was starting this pre-pandemic) about therapy. Treating the tension I still hold in my body due to PTSD will help tamp down this inflammation I'm accumulating enormously.

I'm going to do high-intensity interval training. Apparently it is excellent for scleroderma sufferers specifically. That makes sense to me, as short bursts of energy followed by periods of rest, since I get tired more easily now. Apparently it restores muscle strength, improves health and well-being, and reduces inflammation, as compared to other exercise.

I research the hell out of everything, and have already researched the hell out of this. I will do everything I possibly can.

As my ex-boyfriend remarked when we first began dating, "You have been a fucking hero for yourself."

Amen to that.

I am amazing.

Full stop.

I will easily beat this. FUCK THIS DISEASE, AND FUCK THAT GUY, AND FUCK ALL THOSE GUYS. AND FUCK THOSE DOCTORS.

Amen.

And there's the whole story, in a nutshell, of my bad luck of the last five years. For sure there have been many interesting characters, tales, philosophical revelations and even some fun and love along the way, in the midst of some truly stressful circumstances.

I know the pandemic has affected many of us, even if we didn't lose anyone or get sick ourselves. It's been a tough past year and a half for the whole world.