Aug. 28th, 2009 08:54 pm
azdesertrose: (Default)
I've been at Mom's for the last week or so, helping do while she recovers. She's doing quite well; she still tires easily and she still has limited use of her left arm, but she seems to get better every day, which is good to see (and probably a reflection on her general good health).

However, apparently the stress of taking care of my parents' household whilst still being at least partly responsible for the running of my own has gotten to me, as I've got a migraine that has so far lasted for over 40 hours, making it the longest non-drug-induced migraine of my life. (I had some longer ones when I was taking Wellbutrin, but once I stopped the med, the headaches stopped.)

Also, Vocational Rehabilitation called me yesterday. Their psychological evaluator has decided, without ever meeting me, that I am not yet stable enough to return to work, which means that VR won't help me yet. This sucks moldy hoagie rolls. I was fairly well aware that I'm not ready to attempt to work again, but I had hoped at least to attempt to attend school with the intent of training myself for paying work that I can do within the confines of my condition. The program I want to attend is a two-year course of study. I might call them back Monday (assuming the Migraine from Hell has ended) and fuss about that.

Anyway, still alive, still more-or-less functional, and still crazy as hell. :)
azdesertrose: (Default)
In 1990, when I was in the ninth grade, the Americans with Disabilities Act was passed into U.S. law. I had to research it and write a paper on it for my English class. At the time, the conditions which now render me legally disabled (major depressive disorder with psychotic features and post-traumatic stress disorder) were present but not yet disabling (the psychotic features didn't show up until my late 20s, and the depression and PTSD were manageable at the time).

I hadn't been around many people with disabilities at that point in my life. My elementary school best friend Jessica had a twin sister named Bethany who was blind and severely mentally and physically disabled; Bethany could not feed herself, nor control her bladder and bowel functions, nor had she learned to speak by the time Jessica and Bethany were eleven years old. In ninth grade, my best friend was my next door neighbor, Suzie, who was legally blind; she was severely nearsighted and had been born without a certain type of nerve cell that enables humans to perceive color. She was about six months older than I, but attended the state school for the deaf and blind instead of the local public high school I attended. PaPa (the "a"s are pronounced like the a in apple), my maternal uncle's father-in-law, who, despite only a tenuous connection by marriage to me, always treated me like a granddaughter, had lost the lower portion of a leg and was losing his vision due to complications of diabetes. That was about the extent of my experience with people with disabilities at that time.

I don't remember any more exactly what I wrote in that paper; I no longer have a copy, either printed or electronic. But I do remember that most of what I wrote was about reasonable accommodation, like ramps for wheelchairs and the widespread availability of closed captioning and other adaptive technologies. I believe I said that it was only fair to provide reasonable accommodation, that to fail to provide reasonable accommodation was to disenfranchise people with disabilities. I don't think I was wrong, but I also realize in retrospect that I didn't quite get the whole picture.

Some years later, I remember telling a shop owner that he was in violation of the ADA because I couldn't get my (then infant) daughter's stroller through his shop aisles, so how was a person in a wheelchair supposed to shop in his store? (The stroller was narrower than most adult-sized wheelchairs.)

I remember at various times being on crutches for temporary ailments of the lower extremities and cursing the inaccessibility of public establishments and thinking, "Jeez, what do people who use crutches permanently do?"

I think those are perfectly valid reactions to an ablist world, but that's still not the whole picture.

It wasn't until I became disabled with an "invisible illness" that I really began to see. To look at me, you wouldn't think that I'm disabled. I can stand and walk without assistance. I wear glasses but that hardly counts as a disability. I can hear. I can speak and write clearly in English and Spanish, and I can read and comprehend French and Latin (never was too hot at writing or speaking French, and my Latin is VERY rusty). I can drive a car (even a stick shift) without adaptive technologies (other than my glasses). It took ten years, but I have a four-year college degree.

What I can't do is hold down a paying job. Some days, I am so depressed I cannot get out of bed except to use the toilet. Some days, I can get out of bed but I have to force myself to do it. Some days, I'm so afraid of people that I cannot stand to leave my house. Some days, I can't trust my perceptions, because my eyes and skin are telling me that there are bugs crawling on me. Some days (like today), I'm okay. Occasionally, I even feel really good. Because I can never predict from day to day whether I'm going to be okay or not, I can't commit to a work schedule. Before my condition became this severe, I worked 8am-5pm Monday through Friday (like "normal people"), doing clerical work. I can't do that any more. I'm working with my state Department of Vocational Rehabilitation to try to find a line of work in which I do not have to commit to a work schedule and therefore might be able to get and keep a job again.

What I've come to see and detest is the idea that if you can't (or for that matter, don't) earn a paycheck, what you do means nothing to the world at large (but the "don't" part is for a post on sexism, and that's not what this post is).

What I've come to see and detest is that if you differ in any way from the able-bodied norm, you're not real.

What I've come to see and detest is that if you're not in a wheelchair, or on crutches, or wearing hearing aids, or visibly different from the able-bodied norm, you don't count as disabled.

I'm sure that's STILL not the whole picture, but that's disablism, to me.
azdesertrose: (Default)
Tomorrow I need to go to the Family and Children's Services office and apply for food stamps. I should qualify, based on my income.

I also need to call the SSI people and fuss at them so I can start getting SSI, because my lawyer says I'm entitled to it.

I got more confusing mail from the government today. I swear, they try to confuse you so you don't know what the hell is going on. Apparently my Medicare part D premium will be paid for me because I'm sufficiently low-income, which is nice. It's not that expensive, but every little bit helps.
azdesertrose: (Default)
WE HAVE OUR NET BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well, my lawyer was wrong about one thing. I do qualify for SSI, so SSI deposited a nice fat check into my checking account and I was able to catch up the bills and do a lot of stuff I've been wanting to do, including having a manicure and pedicure today. I took Dixie with me and paid for her to have a mani and pedi too, and we also both got our eyebrows waxed. I figured she might like to feel pretty too.

I will also soon have Medicaid and I technically already have Medicare, so I can get my meds without depending on my doctors for samples.

I have to go for my joy-joy (household term for pelvic exam) next week. I don't expect any drama there; it's just that time of year.

Nicholas is coming Saturday for an extended visit, hopefully to stay.

And I've been reading. A LOT.

That's about it around here.
azdesertrose: (Default)
I heard from my disability lawyers. While I won't see my settlement (back disability) until near the end of the year, I should see a monthly payment come through within the next month or so, so I'm guessing in October I'll get some money. Not enough to go to DeryniCon like I wanted to, but oh well. I guess I just don't go.

I also qualify for Medicare since the judge found that I've been legally disabled since March of 2006. So I'll have to pay a Medicare premium but at least I can get medical care again without breaking the bank.

The lump sum will also be about $3000 more than I expected, which will certainly come in handy.

I still feel all weird and fucked up from my dream. It feels like I haven't taken my meds at all, except I did. I still don't know what to make of the dream.

And the best news of all is that Nicholas (previously known as Nick, but I have since found out he prefers his full name) is coming this weekend. He'll be here early Friday morning, so I get to get up at the asscrack of dawn to go pick him up from the train station.
azdesertrose: (Default)
Cliff is sick. He's got a stomach virus so he's in bed resting. When he wakes up I'm going to make him drink some water and see if he can keep that down. He needs fluids after all the throwing up and diarrhea he's had. Poor honey.

I'm okay, just on my period so I'm a little crampy and cranky.

Mini-me was supposed to come over today but she's sick too so we're going to put off hanging out until this weekend.

I guess that's all that's really going on around here. That, and waiting for SS to come through. *fingers crossed*

More sleep

Jul. 20th, 2008 05:38 pm
azdesertrose: (Default)
I went to bed around midnight last night and slept until 3 this afternoon. Dead to the world, I tell you.

I don't know why I'm sleeping so much unless it's just that I wasn't sleeping well in the run-up to the hearing and now I'm catching it up.
azdesertrose: (Default)
So I paid bills today and now we don't have much left for groceries. This sucks.

Oh, well. At least (hopefully) the disability money will come through soon and we'll stop this constant struggling.

It sucks for now though. Bleah.
azdesertrose: (Default)
Still not to YAY! yet over the hearing. Now I'm all nervous that Social Security will decide to appeal the judge's decision, now that something has finally gone my way.

We really need that money, and the sooner the better. I don't want to be in a long(er) struggle to get my disability money.

Cliff had to skip a doctor's appointment today because I forgot I had to conserve the gas to get him there and let his mom drive the car to get to an appointment she had instead of making her take the bus. But I was thinking of her breathing; it always gets worse in the heat and humidity of summer and I was trying not to make things worse and it seems like no matter what I do I always wind up making things worse.

So he's all irritated with me although he's wanted kisses and cuddles so I guess it's not that bad.
azdesertrose: (Default)
I just got home from the hearing. The judge found in my favor. Social Security may decide to appeal the judge's decision but then they might not. I won't actually see any money for a couple of months still.

I'm not quite to YAY! I'm still just relieved. I was so nervous about it and I was so nervous during the hearing. The medical expert had me scared because he was saying that I function well between episodes but then my lawyer asked him if I'd be a reliable employee and he had to say no. I think that's what clinched it.
azdesertrose: (Default)
Time for me to go get ready for my hearing. I'm nervous as hell. I threw up from nerves this morning, and I haven't trusted my stomach enough to eat or anything.

GODS I hope it goes my way. Wish me luck! Any good thoughts/positive energy/prayers/candles lit/whatever along those lines are greatly appreciated.
azdesertrose: (Default)
I want to cut so badly right now. I feel like it would relieve some of the tension.

But I have no razor blades, and I can't sneak a kitchen knife.

So I'm picking at bug bites and making them bleed. It's not helping.

I'm so anxious I'm shaking. I don't know if I'm going to be able to sleep tonight.
azdesertrose: (Default)
I am so nervous about tomorrow's hearing. PLEASEPLEASEPLEASEPLEASEPLEASEPLEASEPLEASE I need it to go my way. Oh my gods, I'm smoking like a chimney, I'm bitchy, I can't think straight. Help. Mommy.


Jul. 12th, 2008 07:00 pm
azdesertrose: (Default)
So I'm home from the hospital.

Tomorrow will be the test. Cliff will be at work, so I'll have to be good and stay out of my room (where the Klonopin is) and make myself stay here for the hearing.

The hearing is Tuesday and I'm nervous as shit about it. PLEASE PLEASE PLEASE let it come through for me. I need it so bad.

Just stuff

Jul. 8th, 2008 08:53 am
azdesertrose: (Default)
Tummy trouble from last night is gone. I don't really know what the hell the problem was, unless I hurt the muscles in my abdominal wall by coughing because I smoke too much.

My Tessa loves me. She's in here, in the computer room, rubbing around my legs wanting me to pet her. I love that silly orange cat.

My honey loves me too. He's sleeping because he got no sleep on shift yesterday, and they had this horrendous messy call at 3 this morning that they didn't finish until 7:30.

My pre-hearing appointment with my disability lawyer is this afternoon. I'm a bit nervous about it, but it really should be okay. I'm starting to get nervous about the hearing itself. I really shouldn't let myself get too worked up but I can't help it.

I feel like crying and I can't say why. Nobody's done anything to upset me; I just want to curl up with my teddy bear and cry.
azdesertrose: (Default)
Well, the damn Zyprexa landed me in the hospital. On Tuesday, I just lost it completely.

I was screaming, ranting about things crawling on me and shadows coming after me, and clawing at my skin trying to make the crawling things go away. I was hearing voices that told me to kill myself. I poured all my Klonopin into my hand and Cliff had to physically force me not to swallow them and to put them back in the bottle.

So Cliff told me either he'd take me to the hospital or he'd call 911 and let them take me. I let him take me and I got home early this afternoon.

The doctor in the hospital put me back on Invega and gave me enough to get through a month and a half so maybe I can straighten out the financial situation with my regular psychiatrist's office so I can go see my psychiatrist again. Also, by then, I'll have had my disability hearing (please please please please please let it come through) so maybe I'll have that help by then too.
azdesertrose: (Default)
I'm still feeling the side effects of the Zyprexa; my hands are still a bit shaky and don't want to obey me.

Day two on the Paxil, and that seems to be going okay.

I guess I'm just hanging in there. I have a counseling appointment on Monday and I'm to see my disability lawyer on Wednesday about my hearing.

I'm starting to be nervous as the hearing draws closer. I really need the disability to come through for me. I try not to worry because there's nothing I can do about it right now but I'm just a worrying sort of person.

Mike and Charlie are having fun with the puppies; the cute little furballs are not quite house trained yet, and they're going to obedience class to learn to be good little furballs. The homework assignment was to teach them to sit on cue. CC won't do that reliably; I've thought about taking him for obedience training but I worry that he's too old at age 7 1/2.

But yeah, just hanging in there.
azdesertrose: (Default)
My lawyer's office called me this morning. My hearing is rescheduled for July 15, so now I have a date.

azdesertrose: (Default)
Well, I had a panic attack last night but Cliff calmed me out of it. I actually feel better for just having the damn thing and getting it over with.

I guess sometimes you just need an emotional release.

I really felt like cutting myself but had nothing to do it with.

Cliff says I'm not trying to get better because I'm not exercising or taking walks or anything, but his doctor just got on his case today about his cholesterol, which is on the low side of high, and his "good" cholesterol is lower than they'd like it to be. (All his other labs came back fine.) So we're going to start taking a walk together in the evening after it cools off; put the puppy dog on his leash and take a little walk around the neighborhood together. His doctor wants him to walk, so we'll walk.

We like his new doctor; he's very thorough and listens to what you have to say. He wants Cliff to see a cardiologist because he doesn't like the EKG they did in the office last week, so I have to call the cardiologist and make an appointment to see him/her. He's afraid Cliff has had a mild heart attack and didn't know it. He also wants Cliff to start taking low-dose aspirin and is putting him on a statin to fix the cholesterol problem. He was sufficiently cool to give us this neat little package that includes a coupon for the first prescription free, and $50 off the next two prescriptions, so assuming the coupons and the health insurance can be used together, we won't have to pay for his first three months of the cholesterol med. The doctor is very pro-active; he looks for everything that might possibly be wrong and wants to fix it before it's a big problem. We like this a lot. I also like that he really listens to the patient and pays attention to what they have to say. I think that makes for an effective doctor.

Cliff has to have a sleep study because we suspect he has sleep apnea. We saw the sleep doctor yesterday, and he thinks Cliff may have sleep apnea, so it's not just my imagination that he stops breathing in his sleep.

So things are starting to look up. All I need is the disability to come through and I'll be a much more relaxed person, I think. Much less of a stress ball.
azdesertrose: (Buggre Alle This)
I had to cancel my counseling appointment for tomorrow because if I reserved out the payment for it, I'd have had $40 to buy groceries for two weeks. As it was, I managed groceries for two weeks for four people for $86 and change. Of course, I splurged on the goodies for Cliff's birthday; if I'd been a little more restrained, I wouldn't have been so pinched with the regular grocery money. But because my grocery-fu is strong, we will eat decently if not grandly on the food I bought. :D

Gods I hope my disability comes through. I'm so tired of this scraping for money, stalling one creditor to pay another, praying that the utilities don't get turned off, living on cheap food bullshit. It doesn't do Cliff any good and it doesn't do me any good, and it probably isn't good for Dixie and Nancy either, although I'm less concerned about them than I am about Cliff and me. As it is we're going to lose cable, and I am a certified internet addict. I just hope we don't lose the phones at the same time. I don't know what I'd do without some way to contact the outside world.

I am so wound up. Cliff wanted me to take a nap with him and snuggle, but I couldn't relax enough to fall asleep, even though I really like being curled up next to him in bed. I laid down with him for a little while, and then once he was comfortable and ready to snooze, I got up and came in here to write and chat.

I've taken three Klonopin so far today, one as my normal morning dose, one before I went to the grocery store, and one just a little bit ago. It doesn't seem to be helping much. I'm still all wound up and physically tense.

I wish I could just relax, but the closer I get to that damn disability hearing, the more wound up I get. (The disability hearing is next Thursday.) I'm just so scared that I won't get it, that we'll be stuck in this scraping for money situation forever.

Last night it took me a while to get to sleep because Cliff was at work so I was alone. I felt unsafe for some reason, scared and unprotected. It was not cool. This whole situation is not cool.

PLEASE PLEASE PLEASE PLEASE PLEASE let the disability come through for me. We need that money so badly and it will make things so much better and easier.


azdesertrose: (Default)

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