So I warn you from the outset. This won't be pretty. Nor is it meant to be pretty. There is nothing like being sick and tired of being sick and tired. Nothing. Don't tell a Lymie "you understand" over some headache or shoulder soreness. YOU HAVE NO FUCKING CLUE. That's not brain fog. Or even a migraine. Or super sensitivity to sound/noise or light. And nothing puts the "fear the feisty" (a term for a particularly feisty bald eagle who had a rough first year) in me better than someone trying to commiserate via some minor problem. My mother tried that when she'd talk about Advil (or some such) helping with back soreness/stiffness when I've had three straight days of spasms (years ago) and can barely get out of bed.
Then I go off. Full Lewis Black mode till the offending person does a STFU. The only source of albeit minor satisfaction is the silence.
Right now several things aggravate me to no end. One concerns all the overtly religious posts for Easter. Fine. But if you are going to share them and put them on MY feed, don't expect to get a rah-rah Amen corner here. Not going to happen. Sure, Jesus carried me these last nearly 20 years. Well, then, where do I get to complain what a piss poor job was done? What's the statute of limitations for me to say "sorry, no, he didn't die for my sorry ass -- it's still here and my ability to walk has been as shitty as it's ever been in my life." And just to twist the knife in more my mother starts talking to about some living arrangement for me -- as if I want to live in this state. It's going under water, for one. Moreover, I do not wish to be tethered to my parents for the rest of my life. I'm waaaaaaayyy too old for this shit. You may as well run nails over a chalkboard.
Yes, yes, so many Lymies get no respect or support, but I am suffocating and I feel the window on my ability to get better is closing, partly for that alone. Shit like the above is a trap of being an invalid. Just shoot me now. Can't understand for the life of me how Florence Nightingale enjoyed it.
You all know why (the other part) I think the window is closing. Not only this "accept your status" crap, but the obvious fact that the zombie Paul Ryan "priorities" of the GOP "budget" won't die. These include gutting Medicare/Social Security, whether for the disabled, for seniors or everyone on it. So the money lifted out of it like an IOU won't be paid back to those who paid in while money being put into it is siphoned off to Wall Street or the Pentagon or both. They fix on doing this year after year, and some must be jaded that they'll never do it. That's an idiotic risk.
Another reason for my general hostility concerns the person a recent neurologist set me up with for an IVIG consultation. I had reason to feel like IVIG could help. Several professionals encouraged me to pursue it. Well, the doctor who can do so asks me almost right away why I haven't had a lumbar puncture (spinal tap). Here we go again. What the fuck is that going to tell you about my swollen/discolored/cold foot? And if it doesn't show anything, aren't you just making me take an invasive test to cover your ass and not treat me, because nothing there equals nothing wrong? It's lose-lose imo. I even faxed her the pages from Dr. Horowitz's book on why the LP can "make the diagnosis" if there, but the chances are like flipping a coin at best. Gotta wonder why she said "she had no problem" doing the IVIG; sounded like she actually had a significant problem, whereas the referring doctor wanted it and another doctor (who she personally knew) also wanted it.
What does it freaking take to light a fire under some people? I faxed her all the additional information she wanted last week. My confirmation page said it went through.
This is just exhausting. Add to that a schedule that has involved several physical therapy and several chiropractic appointments a week and I'm running on piss and vinegar. And I did not even mention falling down while trying to bend down (forward) to pick up my keys. Tried to stabilize myself on the open car door then my toes come up and backward I go -- butt, back, head all hit the pavement. There I am staring at the clear blue sky thinking "I hope no one saw that." Guess I needed a second or two before I could think of a stream of off-color epithets.
At least I like the PT/chiro combo I have, but I lack the stamina to do an iota of "homework" on the PT. The chiropractic care is of a specialty called Network Spinal Analysis. I tried it once before about 10-11 years ago. I think that was the last time my back felt normal or good. Hoping for a correlation.
I'm also trying to hope that some of the appointments I have upcoming begin to resolve some of the issues I've had getting all the data my clinical nutritionist has wanted so he can prescribe a nutritional therapy for me. Of course, that's been in its holding pattern for different but also frustrating reasons.
Maybe I should send a copy of this to Lewis Black. What's one more job rejection after the doozies I've seen this past month: Like being told you're referred for a certain level but no one gets hired for that? Or how about being told you're qualified but that others scored better on the "open competition" vacancy number, whereas for the same job offered for the "non-competitive" applicants (i.e., disabled) you're told you're not qualified. WTF?
Damn, if I were black, I could just drive a nice car in wrong neighborhood, right...Or if I were Lewis Black, I wouldn't have to care what Medicare thinks of treatment(s).