Enemy of Entropy

YAY!

17 May 2009, 3:45 am. Comments. Filed under Civil Rights, Health.
yay
Current Mood: (excited) excited

Current Mood:Esctatic emoticon Esctatic

We were fairly sure of this right after I finally had my Social Security hearing last month based on the very positive statements from the judge, but I didn’t want to jinx anything. We got the official letter in the mail today, saying that the decision was “fully favorable!” SQUEE!

It will still take some time for that decision to bounce around the bureaucracy and get monthly payments started, much less get the back pay from the SSA. Because the onset date was years ago, I should be eligible for Medicare right away, but I’ll need to talk to the attorney about that on Monday.

I really needed some good news, so the timing is marvelous.

This process has been an insane endurance contest. The fact that the SSA has been absolutely obstructionist throughout (and I know my experience is far from unique!) is ridiculous. The system demands that people who are most in need of help are least likely to get it in any timely fashion, because it takes so much persistence, jargon, and inside knowledge to get anywhere. If you can do all those forms and gather all the records and so on by yourself, I don’t know that you should count as disabled! Even people with good support in other ways don’t always have someone willing, able, and persistent who can and will spend the hours and hours of time to push a claim through.

I started the filing process for one reason: I needed stable access to healthcare so that I could get well enough to go back to work. Five years down the line, I’m not at all sure that I will be able to return to work, because my health has deteriorated so much that it may not be possible to get back to an “abled” state. How many years of productive lives are being in the U.S. wasted for lack access to healthcare?

I get annoyed every time I hear a talking head refer to plans to “insure” everyone. That isn’t what we need! Plenty of people have health insurance and still don’t get the actual health care they need because they can’t afford the co-pays, or the insurer won’t cover a particular drug or therapy, or there are pre-existing condition problems, or…

We need health care. Not divided up by age (this for kids, that for seniors, something else for working age people, oh, right, the disabled here) by universal car, the same care for everyone, for the whole body, cradle to grave. (Who ever decided that eyes and teeth should be separated out, anyway? That’s stupid.)

I read an artcle about San Francisco’s health program last week–if I can find a link I’ll add it later. It does just what I described, from what that article says. I don’t know how much it costs to join, but apparently there’s a lot of outreach to people who are otherwise uninsured. There are no pre-existing conditions.

Does anyone know of programs like San Francisco’s elsewhere in the U.S.?

Shouldn’t Be This Tired

5 August 2008, 8:27 pm. Comments. Filed under Health.
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The girl had an appointment at the doctor’s office today, then we had to go to Children’s Healthcare of Atlanta to have an EKG and lab work done–just part of the normal monitoring for some of her meds. And that’s all we did today, other than trying to pick up my meds (which weren’t ready) and popping by the mailbox.

So why did I collapse by the time we got home, and why do I still have a damned fever?

It’s ridiculously frustrating to be exhausted from fairly non-tasking errands like that. This kind of thing is why, no, I can’t work, at all, outside the home. It’s why I couldn’t manage “normal” college classes.

My SS claim is still in process. They told me last year that I should have a hearing scheduled around March 2008. When I called back in March, I was told to expect to hear something in 90 days or so. Now they’re saying maybe next year sometime! So I wasn’t surprised to read that Georgia has the worst backlogs in the nation right now, averaging 30 months from the time of the second denial before an administrative law judge hearing is scheduled, according to the SSA representative with whom I spoke today. And they’re denying more and more people at the initial filing and first appeal, too, just to try to get rid of us.

If I thought Canada would let me emigrate, I’d be there.

No! Don’t Wanna!

10 March 2008, 10:28 pm. Comments. Filed under Health, Kvetching, Support.

My therapist, L, is no longer with the practice I’ve been seeing for the last couple of years. It took a year to get to her – first, they assigned me to M, who was a total pain in the ass and didn’t listen. Not that I was inclined to talk to her, anyway. And she didn’t return phone calls.

So I finally got beyond the “getting to know you” stage with L, and she understands our family and some history and such, so she can put things in context. And I think they fired her! They weren’t even going to tell me she wouldn’t be there for my appointment this evening. I called to ask her something and her number had been disconnected, which prompted me to talk to the office idiots.

I. Am. Not. HAPPY! It’s a major PITA to break in a new therapist. I mean, it is for anybody, but when you have a bunch of interlocking issues and heavy history crap, then you add in chronic illness/disability, and just for fun mix in that whole bi/pagan/poly thing, believe me, it’s worse. And some therapists aren’t up to it. In fact, the one I saw a couple of times before seeing someone at this practice told me and Sam at the second session that she was in over her head and needed to refer me elsewhere.

Oh – the new person doesn’t do evening appointments, either. Which means that the only way I can be sure of getting there is to take a taxi, as I have not had good experiences with using MARTA for anything time-sensitive. Expensive, but not as difficult as having Sam take time off from work. But L coordinated my appointments with Katie’s appointments with another therapist in the same practice, which was nice. Who knows if this one will be as helpful?

Grrrr.

At Fibrant Living – Working?

22 January 2008, 5:05 pm. Comments Off. Filed under Blogging, Health.

Today’s post is at Fibrant Living. I want to talk about working with a chronic illness, or returning to work after you’ve developed one. Please comment there!

Another week, another 1/4 semester

20 January 2008, 11:40 pm. Comments. Filed under College, Education, Family, Fun, Health.

I’ve successfully completed 1/4 of the semester! Without using any kind of accommodations!

I realize that’s a fairly pitiful thing to celebrate, but I have to take what I can get.

The project management course is actually giving me useful experience using MS Project, along with information that is applicable in the “real world.” There’s also a ridiculous amount of verbiage that I’ve never heard used in the workplace, but maybe there’s been some sort of PM revolution since 2000. I doubt it, but it’s possible.
Read on…