The convoluted course of treatment continues. With every potential step forward, a complication arises, including the difficulty in pinpointing causation. How many elements? What should be addressed first? When does this all make sense?
I cannot say nothing is happening. I just cannot see tangible results -- at least not yet.
Fighting is a marathon. Sometimes when I have thought "I got this" I find at best I achieved the end of the beginning, not the beginning of the end.
Let that sink in: the end of the beginning. The person saying this experienced her tick bite in 1996. Sure, the real downward slide began after 2002, but no matter how the chronology gets parceled, it remains a looooonnnnnnngg time.
I remember that tick bite very well. Only became visible the next day after I sat in some grass in what was then my backyard, trying to set up something for an outdoor party. The bite was raised/swollen, hot and painful to the touch, and about two inches in diameter. Within 24-48 hours the "bulls-eye" characteristic was obvious. The night before I had a doctor's appointment, I became feverish and unable to move or do more than moan. The thermometer said 105. And for much of that evening, I was alone and practically in the dark, because I could not get up to call anyone or turn on a switch. The time between then and when someone found me seemed an eternity. Looking back, I find it pretty outrageous that I was left like that. If I was ever inclined to miss the person who did that, I long since dismissed that notion by remembering that evening.
My trip down memory lane played a role in my court hearing about 10 days ago. Even though I am fairly secure in my Lyme/Co-infection diagnosis, the CDC has made it impossible to talk about Lyme especially in any disability hearing. My problems, however, are plainly visible and I was careful never to utter the word Lyme. Sure, I raised the specter of diagnoses I have traveled through, MS and Myasthenia Gravis among them. I did use the word Babesia, probably more than once. I do not think a stigma is attached to it (if often called a co-infection) and my medical records make it very difficult to argue for a "false positive" -- three consecutive positive tests over the course of about a year are hard to refute.
My lawyer had given me a list of questions he would ask me at the hearing. I read them through to prepare myself mentally to answer them -- to remember various things that belonged as well as how I wished to address potentially difficult topics to discuss, things like incontinence and depression. One really has to air a lot of literally and figuratively dirty laundry if one really expects the judge to "get" the situation.
My education, work history and medical history were brought up first. During part of my medical history, I lost my train of thought in trying to detail my mobility problems. I felt a little blank and kept hearing the echo of my voice into the headset of the court stenographer. It briefly unnerved me. I shook it off. I then tried to convey how I see, thanks to strabismus (essentially doublevision that a head tilt basically "fixes").
The judge began asking me a bit about my sight. I illustrated what I meant. He briefly seemed to talk about his own issue with technical terms used by eye doctors, though it seemed he was contemplating having an eye person evaluate me. I tried to avoid too much jargon and used the simple explanation given to me: "you see very well out of both eyes; they just don't work together."
He must have been talking himself through what he was thinking. My lawyer and the judge exchanged brief comments about some aspect of legal category (maybe a code for some qualifying status) and with that, the judge basically stopped the hearing. He had heard enough. I was surprised. There were a lot of areas of questioning I had not discussed. The "expert witness" (who I thought would testify that there's no reason why I can't work) had not said a word.
I do not know if I should be happy or not. First, the ruling or anything from it takes time. Second, I wonder if anything could change the outcome so long as I do not have anything on paper. In other words, I'll believe it when I see it. Then there's the simple fact that I really do not want to accept that my current situation is permanent. I am working so it isn't. Of course, having some form of support will make it more possible to not be permanent. As things stand, I feel I have been fighting with one hand tied behind my back.
At almost the same time, I received word about an interview for a possible job. I do not know what to make of it, either. I have had so many go nowhere in recent years. And would it complicate the ruling or any back settlement? I don't care if a future one was canceled or suspended or whatever, IF I actually had a reliable income. Of course, in a few previous positions, I feel that once there my problems made the employer want to find an excuse to get rid of me. So job and reliable income are not given as mutually inclusive.
So even when it seems change is possible, it remains provisional and unsettled for the time being, at least. Uncertainty abides.
One thorn in my side is far more apparent. It vexes and perplexes, given I am used to talking on Facebook pages where there are hundreds or even several thousand members. I refer to the petition I started recently and referred to in my last diary, which can be found here:
http://wh.gov/...
I cannot understand how only a few hundred people have agreed to sign it. I have posted it on a decent number of sites, I thought. I also believed that what I asked was appropriate but, even more importantly, was compelling some kind of White House statement about Lyme/Tick-Borne infections (don't ask me tick-borne, tick-born; I guess I messed that up on the original). And yet the number of signatures really depresses me. If there are 300K cases every year, where are these people?!
I invite you to give me any idea you have as to how I can get more signatures on this petition. Frankly, I think a miserable showing makes things worse for those with tick-borne illnesses -- as in underscoring how it's okay to ignore us. Thanks.
11:15 AM PT: There's a part two to this; I haven't written it yet.