Three Good Things!

The last time I respond­ed to a prompt from Plinky, it post­ed with absolute­ly no context—so let’s try to fix that this time. Today’s prompt is:

Share three good things about your life right now.
(A lit­tle New Agey, maybe, but it nev­er hurts to look on the bright side.)

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YAY!

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.?

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Shouldn’t Be This Tired

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.

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Rumbles from the Recliner

Not from the grave, oh no, not yet!

It’s been too long to do a real “this is all that has hap­pened in my life.” Writ­ing it would exhaust me, and read­ing it would like­ly bore you. If you want to know about some­thing in par­tic­u­lar, please ask.

I’ll be post­ing a few things short­ly that I had “ready to go” and just didn’t post, for what­ev­er rea­son.

The girl is enjoy­ing life as a teen, or as much as any teen can. I wouldn’t want to go through those ups and downs again! She’s always my most pre­cious, beau­ti­ful God­dess gift baby, even if she will be 17 this week. That’s our “big thing” right now.

She con­tin­ues to amaze me with her cre­ativ­i­ty. She’s the head pho­tog­ra­ph­er (or what­ev­er they call it there) for the year­book, which has had her run­ning around to all man­ner of events for which there must be pho­tos! Now! Yes­ter­day! Couldn’t they hold Home­com­ing in July? Come ON peo­ple! And she loves it. She com­plete­ly filled her 1GB com­pact flash card with live pho­tos from Fri­day night’s foot­ball game, then had to switch to her small­er, old­er card and be very judi­cious in her shots to fin­ish the game. She obvi­ous­ly needs a much big­ger card!

Yes, she uses her own equip­ment. Her cam­era is head and shoul­ders above the qual­i­ty of those the year­book staff owns, even the few dig­i­tals. That makes sense, con­sid­er­ing the expense of them, the time it takes to real­ly learn to use a dig­i­tal SLR prop­er­ly, etc. Most of what they have are point-and-shoot 35mm film cam­eras, which aren’t such big a deal if a stu­dent los­es or dam­ages them.

Sam is still work­ing at the same place, help­ing peo­ple with com­put­ers and net­work­ing and phones and so on—even A/V equip­ment at times. If you can plug it in, his depart­ment is the one every­body calls first for help. I’m sur­prised jan­i­tors don’t show up with vac­u­um clean­er com­plaints some­times (and I don’t know that it hasn’t hap­pened at some time at the past).

The help­ing peo­ple part is, of course, the most impor­tant thing. He loves it, he does it well, and he finds wells of patience that must come from Some­where Else.

I’m reg­is­ter­ing for fall class­es (DeVry is on an odd sched­ule, but you may have noticed that). We’re look­ing for a place to move to, but not find­ing what we can afford where we want to live. I sup­pose that’s an eter­nal lament, isn’t it?

I’m still a gimp, and now have a (man­u­al) wheel­chair of my own. I real­ly need a ramp for the front entrance of the house, but I’ve delayed try­ing to have one put in here since we want to move.

We’re still in lim­bo with Social Secu­ri­ty. In Geor­gia, the wait to have your case heard by an admin­is­tra­tive law judge is (accord­ing to the SSA office near me) about 36 months, aver­age. That’s the lev­el I’m at now.

It’s damned frus­trat­ing not to be work­ing, not to be able to work. I don’t want to be on dis­abil­i­ty or need it! I want to find a job I can do for a decent wage!

But I’ve had yet more icky health stuff, so… Sam and Katie are more of a bless­ing than I can say, cer­tain­ly far more than I deserve.

I real­ly want music. I mean, to make it. Noth­ing else seems to be able to replace hav­ing a piano (not a lit­tle key­board) in my home. That’s when I sing the most, as I accom­pa­ny myself. (I don’t play all that well, so I don’t play in front of any­one else.) I was think­ing of tak­ing a new vocal class Elise Witt is offer­ing, but it con­flicts with a fam­i­ly com­mit­ment.

I’m re-read­ing Madeleine L’Engle’s Cross­wicks Jour­nals and poet­ry as I mourn her pass­ing. Yes, there will be a sep­a­rate post about that, but for now, I’ll leave you with a tiny quote from her:

I learn my lessons slow­ly, sel­dom once for all. Con­tin­u­al­ly they have to be learned and re-learned, not with solem­ni­ty, but with awe and laugh­ter and joy.

Namaste,
Cyn

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