Again, some weeks have passed since I wrote an entry. Some of the developments are good, some rather bad. This reminds me of an off-color joke I saw published in an undergraduate humor magazine called "Rubber Teeth." The magazine "revealed" the first drafts of famous book first lines:
"It was the best of times, it was the worst of times..."
First draft: "Times were pretty fucking average."
Of course, nothing about this situation feels average to me. Dire would be more accurate. Sick and tired of being sick and tired would also seem more appropriate. At least, I FINALLY am in a position to figure out how to best help myself.
After about nearly three months of waiting, I finally received a ruling from the SSDI appeals judge. It said "fully favorable." Of course, nothing comes without a price. The price is the recognition that your body is pretty abnormally messed up, to say the least. Such recognition cannot be ignored. So long as I sit at a computer and am thinking while I type, I don't really notice I cannot type 70 wpm. And so long as I am sitting down and not able to see (say via a mirror or Skype view of oneself), I do not have to think about either strabismus or ambulatory problems. It's something of a vacation from having to confront these things. Any accommodations made are invisible or non-existent. Until I have to go do something, like go to the bathroom.
Indeed, problems in that area compelled me to seek out a GI doctor, who thought the best way forward was to first have a colonoscopy. So I fasted and drank this awful liquid. Then I misunderstood where I had to go for the procedure, as a Medicaid patient. This caused me to have to remain on a strict liquid-only diet for another day. By the end, that was difficult. The hospital cafeteria was the site of my first craving -- a bagel and cream cheese. Giving into that, meaning I broke my restrictive no gluten, wheat, dairy diet led to breaking the last of it, which wound up being a whole bunch of sugared chocolate, starting with Ghirardelli chips. Doing this turned out to be a big deal.
The colonoscopy itself turned up nothing major and led the doctor to believe my issue is IBS (irritable bowel syndrome). He's trying me on a medication for that. I don't know if I'm giving it a fair trial, though, because the fallout from my diet "cheating" has been massive. I am now certain that autoimmunity problems are preventing me from getting better and whatever small strides forward I was making was owing to eating fairly cleanly on this (turns out some supplements run afoul of these restrictions as well as some foods one would not think were problematic).
Listening to various subjects interviewed by Dr. Amy Myers -- a TX-based practitioner of Functionalist Medicine, owing to her own health problems as a med school student -- as part of her "Autoimmunity Summit" was eye opening. The autoimmune system, during one discussion, was likened to branches of a military that go into action wherever an allergen or "foreign" substance enters the body. But they cannot discern friend from foe and the person becomes harmed from this. This explanation totally explained why months of incremental progress disappeared in maybe 7-10 days. More foot drop or dragging toes while lifting the heel and trying to walk. More instability standing aka wobbling. More reliance on walls to keep me moving in the direction I want. More exhaustion from doing fairly simple things like go up a flight of stairs, as well as more use of my arms to pull rather than legs to push. A right leg that hadn't buckled near collapse for months was doing it again.
I sometimes feel this way after a session in the FIR sauna when going to rinse off. Thirty minutes can feel like a marathon. This would happen when I had not done a session in say a week. (Twice a week is better.) Now I am afraid of using it, even though I well understand the benefit. If I am this bad BEFORE a session, what will I be like after, even if I lower the temp/time?
So what do I do? Well, I've started investigating what genetic components might hinder my progress. These could include allergies or dysfunctions. I did the 23andMe genetic test. Of course, as some of you know, the raw data is gibberish to most of us; a report is needed as well as an interpreter of that report. This company used to make such things available. The FDA shut that area down. They claim the reports are "misleading" consumers. I think this is about keeping health information out of the hands of the public, since I need to engage other resources for assistance. The FDA has made this endeavor harder and most likely a good deal more expensive. Probably they want insurance companies involved, so you cannot know more than they in doing whatever they can to justify not paying for some therapy/treatment.
So far all I can tell you is I'm 3% Neanderthal (most people are <1%-4%). Does that link to needing a Paleo diet? Maybe. The particulars need more study to learn the overall significance of this and anything else.
I am trying to retain some optimism that SSDI offers an investment in me to get better. Of course, the government prefers to think I have MS (as many doctors would) and nothing I do would make much difference.
Still, I like to recall the anecdote in Dr. Richard Horowitz's "Why Can't I Get Better?" where a woman driven to his office collapses in the waiting room and has to be helped into a wheelchair and taken to an exam room. She can't walk, she can't talk. Her husband is the doctor's source of info. But he gets an idea. He had been treating a Parkinson's patient with IV Glutathione (one's liver is supposed to produce it) and he wants to infuse her with one of this patient's stock of bags. Within 10 minutes, she can stand up. By the end of the infusion, she is running up and down the hallway exclaiming "I can walk! I can talk!"
I'm hoping an answer for me is buried somewhere in my DNA report but don't ask me what it is.