I am still trying to figure out the best use of what resources I have to recover from mainly Lyme and Babesia (likely Babesia and Lyme in order of difficulty). The clock may just have been activated, in that the new House GOP wants to put payments for disabled people on SSDI on the chopping block (which are not luxurious by any measurement). Of course, it's not like I haven't applied to jobs or chose to be in this situation. And it's not like I want to remain like this.
In other words, they have no flippin' clue. While so many in my boat do not have obvious physiological problems, mine are PAINFULLY OBVIOUS. One photograph of my two feet will illustrate it (one is swollen and red and even colder than the other) or even one :10 video of me walking from my computer to the bathroom. Do you use the wall to stabilize your gait or a dresser to help your back to straighten and work so you can stand up? I do. Every. Freaking. Day.
The most bizarre aspect of the above is that it took me over 18 months to get approved for SSDI, and they fought me tooth and nail. I cannot imagine how this will become worse if seniors and disabled people are forced to fight over whatever crumbs might be left if the GOP drastically worsens whatever is left of these programs.
In any case, I have to act fast -- and threatened GOP cuts pose only one serious issue. Already, my work experience and degrees are what usually are called "stale." This problem often happens to mothers re-entering a job market. I didn't leave, though. I was pushed out.
I found out how important my dietary restrictions really are in my present state. Last year, I broke them for a weekend but did not notice much difference. At that time, though, I was not on serious medications. Exercise and floral essences may have limited the effects then, also.
In November, I had a colonoscopy and had to fast before it. Afterward, I let myself eat several things I had stayed away from for months. I did not realize that immune systems can overreact, indiscriminately attack one's own body and stay on high alert for months after. I am still in that window. Why do I know that?
My first clue came from practitioners of functional medicine participating in an "Autoimmunity Summit." My own body proved far more eloquent, however.
Let me count the ways: 1) Increased veering off an intended direction; I have less than 2' for a doorway and end up walking into the adjacent bedroom closet. 2) I have stumbled and have had increased foot drop incidents. I nearly headed down a full flight of stairs and caught a railing at the last moment to stop. 3) Increasingly, I careen out of control unexpectedly. 4) My knee, which had shown less tendency to buckle (refuse to support my weight) or need to lock (overly straighten) to stand up has been doing both at a rate I had not felt for months. 5) Finally, I get exhausted after doing the slightest things, like walking across a smallish building. I sit down midway to rest up before continuing.
Frankly, I am AFRAID of using my FIR sauna. There have been times that I have badly stumbled out of it to "rinse off," especially if I had not used it in a week. I am basically that type of mess now, so how much worse would I be using it now? Better to wait and start all over from the beginning. Meantime, I re-introduced a "zapper" that I can use sitting down (not as good as a rife machine, but it's somewhat like that).
So where is the hope in any of this? Well, it's not straightforward, for sure.
First, I know how to rebuild some of these things and slowly reintroduce physical therapy and FIR sauna use. Finding the right timing remains uncertain. I am waiting for my body to show me it has calmed down.
Of course, that rebuilding was far from great as far as progress goes, so that's hardly a goal. Really, it would represent a starting point. Okay, a re-start.
One of the expenditures I really wanted to make with any help from SSDI was the DNA information available through the company 23andMe. I really did not care about the ancestry stuff. Instead, the raw data serves as fuel for a report that could be read by a clinical nutritionist.
The clinical nutritionist reported things that came as no surprise to me, like the high probability of estrogen dominance (one of Dr. Horowitz's contributors to his groundbreaking book Why Can't I Get Better?). His discussion of adrenals, risk of Candida and possible thyroid imbalances were not huge shockers, either. Others were more on target but not things I would know how to extract from a DNA test, such as higher need for magnesium and B12 or higher probability of eye issues, including night vision and a recommendation for a dairy, soy and gluten-free diet.
The biggest surprise related to Mitochondrial dysfunction. Before anyone blame my mother (etc.), it should be pointed out that chronic conditions can affect how one's Mitochondria performs. So Lyme/Babeisia may be the culprit here, especially since they've had years to "play" with me.
Usually, "Lymies" are concerned about Methylation, and indeed I used the group MTHFR Support to generate the report. Do I have a problem there? Yes. But when I asked the nutritionist if it was simply the dessert part of my issues (as in minor or back-end importance), he said, "Not even that." Yikes. Is that good or bad? I'm not sure I want to know. There are potentially scary implications to his answer.
Already, this nutritionist has recommended some supplements but also more testing, which apparently are not standard sorts of tests. So far, I have made arrangements to get one done. My hope is that, with Medicare support and this nutritionist's input, I may have some customized, functional support for my body. This will enable pharmacological therapies to have their best chance of success.
I found out that this nutritionist works weekly with one LLMD, but not my current LLMD, who hasn't shown much enthusiasm for this direction. Maybe he changes his mind when he sees the data and understands why I want to pursue it. If not, I may have to change my LLMD.
We shall see. Frankly, since I don't see myself flying to Thailand to check out the stem cell therapy Yolanda Foster has tired, I think a functional, individualized approach to my situation holds the most promise. It also thoroughly aligns with the discoveries Dr. Horowitz chronicles in his book, if indirectly.
If all goes well, I hope to start nutritional/functional IV support by spring. I can only imagine and hope it's the path out of this long, boring nightmare.