Promises to Yourself

The most impor­tant promis­es you’ll ever make in this life are the ones you make to your­self. I’ve lost sight of that fact, and bro­ken at least one of my promis­es to myself. I need to remind myself of a few of my promis­es to myself (these aren’t all of them, by any means).

  • I won’t allow any­one to act abu­sive­ly towards me. The rule of thumb is that I shouldn’t accept treat­ment that I wouldn’t want for my child.
  • No part­ner is worth my self-esteem, so I won’t stay with a any­one who tears me down.
  • Any part­ner who tries to come between me and my child is his­to­ry.
  • I deserve a part­ner who is faith­ful to me and our agree­ments in every sense of the word, and I won’t low­er myself by stay­ing with some­one who breaks them. New adden­dum: For­give­ness for infi­deli­ty is (at most!) a one-time thing.
  • My life task right now is to get health­i­er in every realm of my life, and I can’t afford to asso­ciate with any­one detri­men­tal to my over­all health.

What promis­es have you made to your­self? How well do you keep them?

How do you feel when you return home at the end of the day?

fractured reality/grace under pain

The NaBloPo­Mo prompt for today:
How do you feel when you return home at the end of the day?

I’m not sure I should have answered this one, as I doubt that my answer will be in sync with the intent of the ques­tion. I don’t leave home every day to go to work, or leave home every day, peri­od.

How­ev­er, when I do leave home, how I feel when I return depends on many fac­tors. How did I feel before leav­ing? How long was I gone, and how much phys­i­cal, intel­lec­tu­al, and emo­tion­al ener­gy did I have to expend while I was out? Did I have to deal with any­thing unex­pect­ed, good or bad? How many peo­ple was I around? Were they strangers or peo­ple known to me? Did I encounter them all at once, or in small groups of one or two at a time? Was Sam with me as a buffer? fHow’s my blood sug­ar? Am I well hydrat­ed? What was the weath­er like? Did I remem­ber to take my reg­u­lar med­ica­tions? What about tak­ing break­through pain med­ica­tion, anx­i­ety med­ica­tion, or a mus­cle relax­ant before I found myself in a state where they wouldn’t work very well? Did I use my scoot­er if there was much walk­ing? How noisy was the envi­ron­ment? Was it drafty, or over­ly hot or cold? Did I have to dri­ve? Was I out to do some­thing I want­ed to do, or was I doing some­thing I had to do?

Fre­quent­ly, I’m so dog-tired that I can bare­ly drag myself in the door. I have actu­al­ly fall­en asleep sit­ting in the car, in the driver’s seat, more than once. (There are plen­ty of rea­sons that I do not dri­ve much any more.) Deal­ing with the secu­ri­ty sys­tem seems an intel­lec­tu­al chal­lenge designed for Ein­stein. I’m eas­i­ly con­fused and my mem­o­ry is beyond poor. Even if I am dehy­drat­ed or I need to eat, I’m too tired to be inter­est­ed in food or even water. If I was out for too long, or if it was a par­tic­u­lar­ly stress­ful peri­od, I get a fever and my body reacts as if I’m in shock. I feel like I’m freez­ing, no mat­ter what the actu­al tem­per­a­ture around me is, and I start shak­ing bad­ly.

So that’s how I feel most days when I return home at the end of the day, if I’ve had to leave home. I think that should go a long way towards explain­ing why I’m such a home­body these days! I am for­tu­nate in that I have Sam, Katie, and oth­ers in my life, so I am able to have a ful­fill­ing life with­out being very adven­tur­ous.

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Fall Cleaning

It has to be fall clean­ing because it’s Sep­tem­ber, right? I haven’t done spring clean­ing at any time since we’ve lived in this house, hon­est­ly. I haven’t been able to do it. But between a new pain spe­cial­ist who isn’t all the way on the oth­er side of metro Atlanta (who actu­al­ly lis­tens to me and treats me like an adult human being who might know a thing or two about who own body, even!) and new, appar­ent­ly much more effec­tive dosages of two oth­er med­ica­tions, I’m feel­ing bet­ter despite that oth­er new pesky health thing. And Sam and Katie have been won­der­ful­ly coop­er­a­tive, as much as they can around work and school oblig­a­tions.
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General Update

It has been some time since I post­ed much here, so I fig­ure that I should do a bit of an update. It isn’t as if any­thing has changed in any big way. Sam has the same nice and sta­ble job, and we’re still very hap­pi­ly togeth­er after—oh, wow, it’s twelve years this month.

Katie is a col­lege stu­dent now, and still liv­ing at home (I’m very hap­py about that!) since she decid­ed to attend a local school. Her health issues haven’t gone away, but she’s try­ing so very hard—I wor­ry about her con­stant­ly. She push­es and push­es until she col­laps­es every day and at the end of every week. She has a very active social life (what do you expect? she’s a babe!), and hap­pi­ly she has a great group of friends who are sup­port­ive about help­ing her get to class when nei­ther she nor I dri­ve.

One of the class­es she was sup­posed to take (French) was can­celed due to inad­e­quate enroll­ment. She was ter­ri­bly unhap­py, and I was a lit­tle dis­ap­point­ed because I was look­ing for­ward to help­ing her with the sub­ject. On the oth­er hand, it was an 8am class, and with­out it her ear­li­est class is much lat­er in the day. I think it worked out for the best for this semes­ter.

I’ve had anoth­er nui­sance come up with my own health, too. Annoy­ing bod­ies. They’re great when you want to taste choco­late, hug some­one, smell flow­ers, etc. but I have some com­plains about a few design flaws.

That’s enough for tonight. Tomor­row: More about Art!

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It Is the Flu

And now I have it, too. Damn it. I had tried to get back to blog­ging dai­ly, but good inten­tions just didn’t hold a can­dle against the entire house­hold com­ing down with the flu.1

For some rea­son I thought Tam­i­flu was a one or two-pill affair, but I sup­pose I had it con­fused with one of the oth­er antivi­rals. I have to take this for ten days! And appar­ent­ly it gives quite a few peo­ple stom­ach flu symp­toms on top of the mis­ery they’re already in or try­ing to avoid. Hap­pi­ly, that isn’t hap­pen­ing to me so far.

I’m not feel­ing very chat­ty, though. So I think I’m going to curl up with the new deliv­ery of mail­box books from the library and apply myself to some brain­less read­ing. Any­thing that requires brain will have to be sent back and request­ed again some oth­er time, because I won’t be able to appre­ci­ate it. (I admit­ted that I was sick when I kept re-read­ing the same few pages of Halt­ing State with absolute­ly no trace of com­pre­hen­sion.) Now I wish I’d made dif­fer­ent selec­tions!


1 Kiyoshi isn’t infect­ed, but he isn’t very help­ful at the best of times.

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Female Heart Attacks Are Different: A Nurse’s Heart Attack Experience

The fol­low­ing was post­ed to a mail­ing list I’m on. Of course, it was sur­round­ed with the usu­al “send it to every­body you know!” admo­ni­tions. I don’t do that, and I usu­al­ly delete any­thing so marked. But I did find the infor­ma­tion use­ful, so (after edit­ing a bit, I admit), I am repost­ing it. I made no mate­r­i­al changes, and take no cred­it for the infor­ma­tion there­in. I’d be hap­py to give cred­it to the orig­i­nal author if I can find any cred­itable attri­bu­tion.
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Maybe It Isn’t the Flu

Katie seems to be feel­ing a bit bet­ter. She slept through most of the day, and just got up a few min­utes ago (right at the end of my and Sam’s date) feel­ing like she could eat some­thing. Sol­id food, even! That’s progress. Since she didn’t have any antivi­rals, I don’t think this was real­ly the flu. She should still be much sick­er if it was. I’m not at all unhap­py about that. Read the rest of this entry »

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I’m Feeling Better!

(I think I’ve already used “Not Dead Yet” as a title, and I real­ly don’t like to be too repet­i­tive.) I haven’t been post­ing much, and it isn’t real­ly because I haven’t had any­thing at all to say. In fact, I’ve repeat­ed­ly start­ed to write posts. In fact, I’ve fin­ished writ­ing some posts — but each time, I’ve been side­tracked by the fact that the bit of geek mag­ic that makes my words post here and to my LJ account is bro­ken. I did a cou­ple of posts by hand, but that’s inel­e­gant. Hence, the pub­lic has been deprived of my wis­dom. There, there now. It will be all right. Tru­ly.
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An Update Instead of a Book Review!

I looked back at my recent entries and real­ized that it’s been a real­ly long time since I post­ed much of any­thing sub­stan­tive. I’m com­ing out of a long peri­od of being near­ly zom­biefied thanks to one of my med­ica­tions. I didn’t real­ize that was hap­pen­ing, as I’d been on that drug for years with­out that prob­lem. Appar­ent­ly, the prob­lem was a com­bi­na­tion of my dosage being increased last fall and inter­ac­tion with oth­er meds. Unfor­tu­nate­ly, I found this out because of an irre­spon­si­ble doc­tor who refused to see me as sched­uled when I was due for refills, and wouldn’t give me refills with­out see­ing me. Crash­ing off the max­i­mum dose caused insom­nia and seizures.

Yes, seizures. Some­thing I have nev­er expe­ri­enced before, and I real­ly didn’t need to add yet anoth­er square to my per­son­al Symp­toms Bin­go Card. I fell right out of the bed dur­ing one bad seizure last week. We have a captain’s bed designed for a water mat­tress, but have a reg­u­lar mat­tress and box springs on top, so the whole thing is much high­er than most beds. I have to use a step­stool to get in and out of bed. So falling out was much more painful than falling out of most beds. Hit­ting my fore­heard on the wheel­chair and whacked my chin but good on the lapdesk didn’t help. I have no idea what I hit with my right fore­arm, but it still looks like a per­son bit me. My left arm has funky bruis­ing and a cut, both knees are bruised and car­pet burned, and my tor­so is also bruised and sore. Lots of fun! Now my chin is actu­al­ly black, mak­ing me want to wash my face every time I see a mir­ror. I’ve nev­er been able to feel the swelling in a bruise as dis­tinct­ly as this one, either.

I’ve seen a new doc­tor, who switched me to a bet­ter med­ica­tion. It’s help­ing to slow down the seizures, but I’m still hav­ing some. I’m still sleep­ing a lot less than I was, which is good. What isn’t good is that I’m hav­ing trou­ble sleep­ing well, peri­od. Hope­ful­ly that will go away soon.

Social Secu­ri­ty is still mess­ing around with my case and hasn’t paid out a dime yet, or sent me a Medicare card. If you ever have trou­ble with the SSA, don’t even both­er try­ing to find any­one to take respon­si­bil­i­ty for straight­en­ing any­thing out. Just go straight to your Sen­a­tor or Representative’s office. I’d been try­ing to get a straight answer from some­body, any­body, in the whole orga­ni­za­tion for about a month with­out luck. Less than 48 hours after con­tact­ing a Senator’s office, I got a mes­sage that my file is at the Bal­ti­more pay­ment office, that they have all the infor­ma­tion they need to pay out the claim, and that we should see mon­ey very soon now.

I was real­ly hop­ing to get the Medicare thing start­ed in time to maybe have a pow­ered mobil­i­ty device before Drag­on Con, which would let me go and enjoy the con for the first time in years. The last time I went, we rent­ed a scoot­er, so if the mon­ey comes through before the con I sup­pose we might try that again.

In more fun news, we fin­ished watch­ing Torch­wood: Chil­dren of Earth last night. Talk about depress­ing! Gwen and Rhys were the only ones who came out of that as heroes. And now I read that there’s going to be a fourth sea­son? Who the heck will be in it?

I’ve slowed down on read­ing books, par­tial­ly because I can actu­al­ly do some oth­er things for a change. The house is slow­ly improv­ing! I’m hop­ing we can even enter­tain again before long.

I haven’t been keep­ing up with most people’s Live­Jour­nals or any­thing else, so if there’s some­thing I should have seen, I’d appre­ci­ate a poke in the com­ments here.

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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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