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My pain is getting much worse. I've dropped out of taekwando because I just hurt too much now. Master says I can still participate the days I can and I don't have to do everything, I can sit out as much as I need, too. He's so kind and understanding and works with me) It's like all the pain in my neck and shoulders is dripping down, coating my entire body. It hurts from my hair to my toes.

I've been discussing with a lawyer my process for disability, but she said at this time they won't represent me because I'm working full time (and part time). The issue is, I'm working at a job I can't even properly do anymore, in 11 days on 1 day off rotations, physically and mentally breaking down only because I cannot survive without the money. They expect me to not be working while waiting who knows how long for my ssdi to be approved. It'd be nice, except the fact that food, shelter, and medicine aren't free. If it were, I'd not be in this stupid fucking predicament.

My job isn't going to fire me because they fear ACA lawsuits (at least, not until they launch my robo-replacement), and I'm not quiting because I need the funds. If both mother and I aren't working, we would lose the house, and I'd die from not being able to get my medicines.

I don't understand why my HAVING a job doesn't mean I'm not disabled. I'm struggling so much that every day I don't end up in the psychiatric unit is a miracle.

To make matters worse, I know my doctor, and I know he will refuse to vouch for my condition. It was hard enough getting him to let me have a handicap placard.

I'm getting roughly 2-3 hours of sleep a night because I keep waking up from pain. I've upped my narcotic dose to the actual prescribed dose and it's barely touching it. I'm so dizzy and faint lately. I ended up in the E.R. last week because my dystonia got so bad I was literally bawling at work. I thought I broke a rib in my back it hurt like a punctured lung, I thought I was dying. I actually wished it was like the time I nearly died from full body paralysis, because at least then I didn't feel anything. (Not saying I want to die, but when you feel like you're dying, you want it to be painless)

I'm miserable. I can't even sit for long periods anymore. I sit, then stand, then sit, then I need to lay down. Which I can't do at work.

I can't even reduce my hours, because my coworker is in a crucial time in her schooling and can't cover anymore.

I've rescheduled my obgyn appointment at least 6 times because I need to focus on my pain specialist appointments instead.

Oh also I learned Sunday my grandmother might have MS or a brain tumor. We are hoping it's MS because that is less life threatening and could be a sign of what's causing my tremors and issues, but it's probably brain cancer. She's already had 3 cancers, and she's older than most when they get MS.

I don't know. It's so hard to deal with all of this. To make matters worse, my parents are financially crippled now that mom isn't working. My dad has been trying desperately to sell the truck so we can afford her medicine and Zachs school stuff and food, but no one wants an old beat up truck with 220k miles that gets 12 mpg. (Even I told him not to buy it to begin with) and mom is trying to sell other stuff. It's such a struggle.

I get paid Thursday (tomorrow) and pay them rent, but that won't be enough.

Ugh sorry, I didn't mean to go on that much of a rant. I only meant to talk about the disability lawyer bullshit but it's just been one thing after another every day.

LadyAlyxandrea 8 Sep 19
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You will need a Doctor who is on your side. Sometimes confronting works - sometimes seeking out one who simply sees the to eye with you works.

Are you in therapy? Because trust me - if it's covered by ins? It would be a big help. Plus it's one more professional in your corner.

The craziness of disability does not escape me. I did stop working - I had no choice. Credit cards for me and savings. Every last bit.

Try to remember you aren't responsible for your coworker. Can't they hire a floater? Obviously you can be made too sick to be at work. The overtime should go.

Hang in there. PM me if you'd like to talk.

I know what some of this feels like.

RavenCT Level 9 Sep 19, 2018

My pain specialist will support me. Unfortunately therapy is too expensive even with insurance.

I had emailed my pain specialist last night about how much worse I am getting. This morning he ordered me a new MRI of my neck as well as one of my head which hasn't been done yet

@LadyAlyxandrea Probably important documentation as well as having that information for treatment.

Completely unrelated but my Pain clinic put me on a patch and it's very even-handed relief. Not the up and down I had with extended release pills.

If you want more info. - just @ me.

1

I am truly sorry. That is a crappy place to be. Do you have a doctor who specializes in auto immune disease? If there is such a thing.

GreatNani Level 8 Sep 19, 2018

I have a hemotologist but he's not exactly helpful

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