A few of my friends have made mention of the fact that I haven’t posted lately. I swear I haven’t quit. I am, however, quite touched that there are people out there who get something out of reading what I have to say. After the way I’ve been feeling, well, it’s nice to know someone cares, that someone is paying attention.

I feel kind of bad that my health is all I’ve had to post about lately. I made this blog to talk about my knitting and my foster kitten career (of sorts), and I really haven’t had anything to say about those subjects. My life is my health crisis right now, and that’s all I have going on. So, I guess if you’re still reading, you care about that. In that case, I’ll talk.

This is just one dose of the medications I take every day. There are twelve pills in that pile, and seven liquid or topical medications. Most of these are things I take twice a day, and some I take three times daily. A few of these were prescribed by the allopathic doctor, some by the chiropractic nutritionist, and some by the chiropractic neurologist. All told, I take thirty(ish) pills per day, plus the liquids and creams. Some are vitamins I am taking because they are too low in my blood values, and it certainly won’t help anything if I’m not in the right range. Some are supplements that regulate the various processes that are going wrong in my body. Some are hormone supplements, and some suppress hormone production. All seem vital to keeping me in one piece.

I had been making progress for awhile. The biggest keys seem to be the D-Ribose and the progesterone: the D-Ribose seems to halt the muscle degeneration and the progesterone keeps my mood stable. The rest of them create more of a slow healing process, and I don’t notice their effects as much. I’ve had to add the newest supplements (especially the ones prescribed by the neurologist) to my regimen slowly because in the wrong dose they have very bad effects. One of them drops my blood pressure too much if the dose is too high, and in a just slightly higher dose, sends me into hypoglycemic episodes. I’ve learned that when I really feel bad, I should measure my blood sugar. Generally, when I feel sick and I remember to measure the blood sugar, it’s way too low, like in the 60s. I don’t know about disorders of blood sugar regulation as well as I know about thyroid issues, but I believe that blood sugar should generally be in the range of about 80-120 to keep you feeling and functioning well. If it’s in the 60s, I get sweaty and dizzy, and I have a little trouble staying upright. One of the liquid supplements makes my stomach unhappy, so I take it only when I can stomach it. One of the topical supplements makes me sleepy, so I take care with that one as well.

Note the use of the past tense in my previous paragraph. I was doing well, and I was improving. It was slow going, but day by day I got incrementally better. When Christmas rolled around, I was overjoyed that my brother and his family decided to come out and spend two weeks with me. While I was thrilled about this, I knew there would be a cost. My brother has two children, and it takes a lot of energy to entertain them. Not that this is a complaint, mind you, but I knew I would have to do something to make it through each day. I started by increasing my caffeine intake (the neurologist specifically told me to take as much as it took to get through a day, but not so much that it made me jittery). When adding more caffeine had no effect, I moved on to taking pseudoephedrine. I didn’t feel too bad about doing that since I did catch a cold and pseudoephedrine does treat the congestion, but I also knew that right before my health disaster started, I was taking a lot of pseudoephedrine, and it might have been a factor in the crash.

The nice thing was, while I was on the pseudoephedrine, I had a good day. One day where I felt honest-to-goodness normal. It happened to fall on a day I decided to take my brother’s family out for a hike, so the timing couldn’t have been better. Everything went away – the hypoglycemic episodes, the inflammation in my head, the low blood pressure, the mood issues, the energy defecit – I mean everything got better. After my brother’s family went back home, I stopped taking the drug. I knew it wasn’t a long-term solution, and I expected to have a few days where I was more tired than normal, but I figured I’d recover and all would be well.

I saw two of my doctors when I was on the second day of coming off the pseudoephedrine. They both commented on how I seemed to be in good spirits – one of them even commented that it was refreshing to see that. I didn’t have the heart to tell them that I was pretty sure that it was going to be worse for a while, but since my appointments are a month apart now, I figured I’d get worse for a while, then I’d improve in time for my next check-in.

Normally, when people go to the doctor, they just expect the doctors to figure out what’s wrong and treat it. My situation has just been so complicated that I’ve done my own research, come up with my own ideas, and bounced them off the doctors. I’ve never really been one to do something just because someone else says so, so this collaborative approach wherein I contribute to the diagnostic process suits me better. I might be mistaken, but I think the doctors I see seem to appreciate that I take an active role in my treatment.

Before the last doctor’s visit, I did some research on what exactly pseudoephedrine does in the body. It turns out, it works indirectly on the nervous system; specifically, pseudoephedrine releases norepinephrine (noradrenaline – an adrenal neurotransmitter) from storage. Norepinephrine causes blood vessels to constrict, raising blood pressure and thereby redirecting blood flow to the brain and heart. It’s all part of the flight-or-fight response. I brought this information to the neurologist, who now thinks I’m on to something. I don’t know what this will mean for treatment, but I suppose I’ll find out when I go in next month.

In any case, all the improvement I’ve made has come to a halt. Along with the expected effect of increased fatigue, I had an almost complete return of the total devastation that I experienced in July. The inflammation has gotten worse, the muscles on my right side have begun to deteriorate again, food made me nauseated, causing me to lose weight rapidly (about four pounds in a week, but it seems to have stabilized now), I can’t hold a spinal adjustment anymore, my headaches have returned, some of the numbness in my face and arms has returned, and when I get tired, I find myself in tears for no reason at all. The differences this time are that the symptoms are not quite as severe as before (but still pretty severe), and I am generally in control of my emotions this time. I can’t figure out if the last part is just because I’ve fought this battle before and I know what to expect, or if the progesterone is really making that big of a difference. It’s truly hard to tell.

Despite my instinct not to do so (something I will explore in a later post), I let the doctor I’ve been seeing the most know that these things were returning. I also gave him an analysis of what symptoms are the same as the last time I crashed as well as what events preceding the crash were the same. The thing that struck me, and the thing I wouldn’t have noticed had I not written it out, is that I caught a cold right before I fell apart both times. At this point, we’re exploring the possibility that the crash is autoimmune in origin. The idea is that my immune system was triggered by the cold, and when that was over, the antibodies went for the brain. While the chiropractors were treating me after the first crash, my primary care physician told me to ask them to be aware of an autoimmune encephalopathy (brain infection, basically) that is associated with autoimmune thyroid disease. The connection between the crash and the preceding cold set off an alarm bell, so now they’re taking this possibility more seriously. My body has been very happy to attack random other organs (my intestines, my skin, etc.) besides my thyroid, so this is really well within the realm of possibility. The thing is, the autoimmune brain disease is only just now coming to light in the medical field, so they have no direct way of diagnosing it, and the only treatment available is steroids. My primary care physician isn’t thrilled with the idea of long-term steroids (some of the long-term effects are liver and kidney failure), so she was happy that I was already seeing doctors who lean away from pharmaceuticals. She encouraged me to stick with them for treatment.

While I would most definitely like to have an answer to this health disaster (it’s been seven months now), I am more than a little worried about autoimmune encephalopathy being that answer. I am taking the key actions to keep my immune system under control, but the fact remains that an autoimmune brain disease would be degenerative. It means that there is every chance that this is as good as I will ever be again. It’s devastating. It ensures that I will have no real future, at least not a future in which I will actually be able to attend med school and practice as a doctor, or to achieve any other truly ambitious undertaking that I’ve been dreaming of. I am sure that I can do something, but it just won’t be like I had hoped. It’s a lot to swallow.


3 thoughts on “Missing

  1. I’m so glad you decided to write a bit more about what is going on. It does sound like with every ah-ha moment comes an oh-no moment, but try to focus on the best outcome rather than the worst. You’ve found another clue! You are so smart and together with your doctors I am sure you will continue to make progress.


  2. I’m so sorry, Barbara! That sucks! It’s really hard coming to terms with the limits your health puts on you, I know. I keep trying to find a bright side to my RA. The only thing I’ve come up with is that it makes me appreciate the love and support of my sweet hubby and my friends more. Anyway, I send you my love and a big hug! Hope you start feeling better soon.

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