The agency who handles my home care nurse (a separate service from my aide ) has been aggressively lobbying to asses my legs. To get eyeballs on my skin to monitor the bilateral lymphedema. My nurse did this out of a genuine place….”What if, since you have unskilled eyes on it, you get an infection or a clot or have to go into the hospital?” I suspect her administrator might have had a few more monetary reasons…because they thought Medicaid would cover this…and it cannot. I have been leery because last year, Cleveland Clinic homecare nurses wouldn’t do it, stating “it’s a liability issue” …but after several kinds of conversations with me, the lobbying by the agency that handles my nurse visits now currently convinced me it was a good idea, the nurse got trained, and I was ready to go….but, they only bill Medicaid. In addition the community based program that handles my aide now says, because the can of worms has been opened,says “cannot have the aide put on my bandages on the clock.” In other words they can take them off and wash my feet but they cannot put them back on.
But my lymphedema therapist wants me to have these bandages on daily, and 23 hours out of 24. That would indicate a seamless process. Take the bandages off, wash the limbs, put lotion on limbs, put bandages back on.So, again, neither nurses nor aides can place these bandages, and I am physically unable to do it myself.
What the aide can put on, compression stockings, are expensive, not covered, and on top of that are ineffective for me. (the Circ-Aides I do have are expensive, not covered, and effective. The key difference of course, being the word effective.)
So, either I self pay someone to come out here every day and put these on, Money I do not have.
Or I cease any sort of bandaging, go back to a mild compressive sleeve until my legs break open from the excess of fluid, exposing me to infection, sepsis, cellulitis…*then* the nurses can come until the wound heals….and I lose the bandaging help again,
Or I give up my life and go into a facility.
I’d rather risk my neck here than some facility so if it comes to non treatment (the mild sleeve) well then it comes to non treatment.
First of all I’d like to apologize in advance to long term disability activists everywhere…because (1) lists of ‘patient overcomers’ do nothing to advance the notion that hey, we’re really( just like Joe Average down the street, but I swear to Lawrence Carter Long, and Carrie Lucas that it’ll only be in the first half of the post, ok? Then there’s (2) I’ve lost the link, but stories of increasing harrasment of persons with disabilities in the Uk since austerity went into effect are out there on the internet… been searching for it for half an hour, but this rant woke me right up out of a sleep and is now in danger of leaking out of my consciousness before I get it down, so I’ll risk the ‘publish now, source later” thing.
Evidently, there are a small sliver of extremist UK folks so fond of the austerity program in Britain, so *proud* of their work there that they increasingly feel the need to accost people with disabilities over dinner and wonder why they’re you know, out in public, because it really isn’t their place at all, yelling that they “were “Cameron voter”[s] and that people with disabilities would now be put in their place.
(first and foremost, I’d imagine that the annoying able bodied moron making this claim obviously spends too little or too much time in a pub. What a humorless waste.)
Some seem to feel it’s ok to express pure revulsion and hatred of us even being *seen.* They believe their hatred to be validated because we cost money to care for sometimes.
First, temporarily able bodied idiot, let me pull up this wheelchair, yank your tie so your face is right down near mine. Force you into a chair facing me. Yes, sit the fuck down, turkey because we’re going to have a talk, by which I mean you STFU and listen and I talk.
Just what is the ‘place’ of folks with disabilities, buddy? Well, lets see now.
It’s on stage, in comedy clubs like Josh Blue, or Maysoon Zaid. On TV and film like Marlee Matlin, or Peter Dinklage. At Mount Everest base camp where a person with Down Syndrome recently arrived. It’s wherever Helen Keller spoke…and yeah, even though he never identified as such, even actively kept his disability hidden, it’s in the freakin’ White House, as manned by Franklin.Delano.Roosevelt during the Great Depression and World War Two. (Ok, list of supercrips is over. Chide me for it later. Some bleaters need hit over the head with it.)
Worst of all, (and I just *know* this is what peeves you out the most) It’s right next to you. In the office, or teaching your children at university, or traveling…or just taking up space in a local park. Because we are just like you. We deserve the same freedom of movement and association as you do, the same social opportunity, because we are human beings.
It’s you, able bodied bully, that need to go home and shut yourself away from society for awhile until you learn not just the manners and common courtesy to zip it if you think such drivel, but do a little wondering of how you’d feel if the person closest to you became disabled, and then you decided to go out for a bite and got completely disrespected like that.
Ok leave. Get the heck out of the public space until you’ve learned your lesson. And shut your mouth.
One of my many weaknesses, is that I have a big mouth. And that big mouth often gets me in trouble.
I would have thought ‘shunning’ went out when I graduated high school (or at least by God college) but there’ve been times in my fairly recent past when I said or did the wrong thing, but did not know it…then all of a sudden. Shunned. Not spoken to, abruptly by someone who I considered a friend. And, by the ‘set’ of friends of theirs, by association. The word has been passed. I become persona non grata. I mean I’m fifty one, that might mean that me and a majority of those I associate with are considered adults.
And honestly, I have said some stupid, offensive shyte in my time. If I realize that it is in fact offensive, I ha or am told right at the time that “hey that was _______I’ve now learned to do the civilian version of the walkback…and fix it right there.
But there’s that lesser category of “I’ve offended you, and you think I am absolutely in the know that I’ve done it, but I actually have no freaking clue what I did. I can tell they’re angry, but have no idea why….has happened about five times over my adult life. So there’s never the conversation. You decide I’m not worth your time and go on your merry way, but when if we run into each other, the awkward silence continues.
It’s only irritating when it’s three dimensional. When a celebrity or a friend blocks my email or blocks me on social networking, I kinda shrug and move on.
And, I’ve seen grudges like these held for eight years or more…so I know we won’t be speaking again, ever. But if I literally don’t *know* what it was that I said that offended you…I have no chance to make amends, to examine what I said or did that peeved the person out. A former friend of mine finally did that, and still wants nothing to do with me ever, but I’m incredibly grateful that I now understand why they’re pissed. It’s a learning curve for me so I don’t pull the same insensitive crap again. In other words by explaining to my clueless self why you’re mad, you’re saving another friendship of mine down the line, even if the present one is completely trashed.
One of my strengths is, that *when it is pointed out to me* I get that I’ve offended, and genuinely try to make it right. This has been a learned behavior over time, a skill I have now, that I didn’t always have.
And it just drives me nuts when I’m not given one last opportunity to fix it….Even if there’s really no way to do so. I don’t obsess over the friendship itself, I don’t pine away for it (gag), but there’s that little annoying bee in my head that keeps buzzing….”What the hell did I *do?*”
I do have one former friendship where I’m the one that initiated the not speaking, but *before* I did that…I let them know why. In no uncertain terms.
Because, like I said I have a big mouth.