Just for the sake of saying it, I understand and recognize (100%) that my write-up, both of the symptoms, and of the daily/descriptive bits, is disjointed, a bit confusing in parts, and is even seemingly contradictory in parts.
There are a variety of reasons for this. One, about half of it was written a year ago for a hearing in Florida. Then I picked that document back up the other day, and added the rest. What you've got then, is a narrative broken up from two pretty different point of views. Me in 2005, then me in 2006. Worse in 2006, far more broken down, far more limited. And certainly, far more bitter.
Another issue is that this isn't some sort of fixed issue. Today, as I type this, I can sit up in bed. Yesterday I couldn't. Today, I may go up at some point and 'risk' a shower, normally I'm limited to baths because I can't stand that long. Today is a "good" day. One that may turn bad because it's good enough that I want to push myself (appreciate that "push" myself means sitting up as much as I can, trying that shower, maybe trying to stretch a bit more than usual -- being up more than a few minutes once or twice is out of the question, letting the 'stretching' turn into light aerobic exercise is as well, I might be more vocal today, but that will have to have limits too) a bit -- but that's the life.
With the medical issues, it's because I'm drawing on two different things. Our personal recollections of tests, events, doctors, results, etc., and a 2-3 inch stack of documents, much of which we only came into possession of within the last 6-8 months. Take my lungs as an example. There's the nodule. There's the opacity. In one set of results, the opacity was in the right middle lobe, but they couldn't see it laterally. In another it was the lower half of both lungs. In a few it's identified as being because of the pectus issue, in a few others it's postulated that it could be a fluid. What's the truth? No idea.
What I've presented is a clumsy summary of everything. A written regurgitation of our understanding of everything we've read, been told, and experienced -- all over an 8 year period -- but focused on the 'today'.
I am working on cleaning it up. Have been over the last few days. Trying to get it to a point where I could show it to an advocate (if we found one), a doctor (if I could see one), or the judge (if they ever move on my case), and have it be meaningful, rather than confusing.
Which means the frustration has to come out of it. Which means I need to quote from existing documents more. Which means it has to be laid out in such a way that docs could browse related symptoms trying to find a suggestive pattern.
Not being a doc, I don't know how best to do that, but it's a work in progress.
I say all of this, because I've had a few people comment on the fact that there are some puzzling, even contradictory, areas. I fully recognize this. As part of the process, if anyone wants clarification on ANYTHING, wants more info about ANYTHING, or wants to point out problem areas -- then please, please speak up. Don't be shy. Don't feel like you're prying. I dumped it all on the whole lot of you voluntarily as part of an effort to ask for your help.
The more you, my friends, question and scrutinize it, the better prepared I will be for those who are NOT my friends to do so.
Understand that unlabeled long-term health woes are met with an extraordinary amount of skepticism. When someone lays them out the way I have, the gigantic scope and breadth is certainly suggestive of someone who is FAR more focused on being sick than they should be. Meaning, someone who might be creating a lot of this for themselves. I understand that completely. I understand why, when some of you take this to friends in the health/medical community, why their first reaction may well be "I think he may need to see a mental health professional", or "I'm confused, there's too much here, none of it really clicks together to suggest a specific problem", etc.
At the end of the day, I'd like to just get by, even if it's like this -- with all the pain, with all the limitations, etc. I'd love to actually "get better". Being able to do something as inane as going to the grocery store sounds like a dream to me, literally. Playing outside with my dogs, well, being that active just sounds like a wonderful but impossible concept. My new 'open' nature about this stuff comes because I recognize that, without some sort of intervention, I don't get any of the above. I just get worse, and then something that should be trivial causes a premature end. That's not really what I'm pulling for.
So, to encapsulate -- I *know* my summary is a disaster. A real mess. If anyone can provide some questions, comments, feedback, info, etc., that can help it take on a more meaningful shape for future use, I would be greatly appreciative.
I'm hoping to have it cleaned up so that a 'better' version can be used for the public forums. The scrutiny then, both that which I'll see and hear about, and certain that which I won't, will be magnified by all measures. I just want it to be clean.
