The System Has Made Me A Cynic

Sorry it's been so long since I've posted.

I finally, FINALLY, after over a year now since I first filed with the aid of a lawyer.... actually I think it's been over a year since I was denied and subsequently appealed, received a notification from Social Security that I have a hearing date scheduled for January 20th.

While this is, generally speaking, good news, I'm not exactly jumping for joy.

The truth is, I've been living with this horse hockey my body throws at me for 18 years, and in all of that time, every benefit I've ever received from the government - be it local or federal, and really, the only ones I've ever gotten approved on have been local, being foodstamps and, until more recently given the change in laws here, Medicaid - has been fought for tooth and nail. Food stamps weren't as difficult as Medicaid. Getting Medicaid for the first time, I was denied, and had to appeal with assistance from a group that worked through a hospital to help people such as myself.

Now, with the change in laws here, you can't really get Medicaid if you aren't a mother or aren't receiving Social Security benefits.

I've been trying for years now, literally, years, to get Social Security. I've applied and appealed, and applied and appealed again. Every time, I was denied. Every time, they say I'm healthy enough to work. They don't live in this body, they don't live with my brain. How the hell can they know I can work based off of a 10 minute physical exam from a doctor that has no rapport with me, and whatever they decide is worth listening to in medical records, which apparently is nothing at all?

The system here really isn't at all fair. I would honestly love to work. I really would. But it's just not a realistic undertaking. Employers don't want someone who will be erratic in their availability, and who has so many doctor-ordered restrictions.

The appeal hearing will be different in the sense that I will be able to speak for myself, I'll be able to offer my side of the story, they'll have a face to go with all of that paperwork, and they can get more insight other than just what's written down. In spite of that though... I just can't muster any real optimism. I can't.

Those of you reading this that know me well, you know how big of a deal that is. I'm forever the optimist, the positive one, the  everything happens for a reason type. But this? I just feel like it's a higher step to stand on before I get knocked down to the bottom of the stairwell again.

You're probably wondering why I even bothered trying if I don't think I'm going to win. The truth is... I'm trying because I have to. Because I don't really have any other choice or any other options available to me at this point in time. I have to keep fighting, even if it's a futile battle, and hope that maybe sometime, somewhere down the line, someone will hear my voice over the din and actually listen and understand.

Who knows, that may even be this judge that I see in January. I doubt it. But, maybe.

The thing is, all of these denials, all of these hoops I've had to jump through for every little scrap the government wants to give me... it's sucked the positivity and optimism out of me when it comes to anything related to things like that. It's just... I'm going 'well, I may as well do it, I've got nothing better to do, right?'

I know that sort of attitude won't help. I know that sort of energy won't help. But I literally cannot help it. I try to have faith that it'll work out, and I pray constantly that it will, but there's only so many times I can get kicked in the teeth before I start putting my hands up before the boot can reach me.

Growing Up Chronically Ill

I started having chronic pain at the age of ten, thanks to a whiplash injury triggering the onset of Fibromyalgia. Chronic pain became a fact of life for me; needless to say, I kind of grew up pretty quickly because of it. I have no recollection of what it’s like to be a ‘normal kid’ or a ‘normal teen.’

At the age of 7, I was pulled out of public school for home schooling - my immune system was crap; I attended one more day in the first semester of first grade than I was out sick, if that gives you an idea. So, I had very little socialization with kids my own age, and at 16 I went to an adult education facility to work towards my diploma as opposed to a GED. Around here, that basically means I was suddenly thrown into a crowd of dropouts and people that were expelled - generally not a good crowd. That went about like you’d expect, and I wound up, after legal trouble, getting my GED. 

Now, I told you that story to tell you this one.

I’ve worked two jobs in my whole life. Just two. The longest one lasted about two months, and even that had multiple call-offs which lead to my being fired, the shortest one lasted a week because, hello crap immune system, I got sick, and had to call off multiple days in a row thanks to not being able to talk (it was a call center job.) Boom, fired.

I’m now 28. No job experience, extremely limited in what I can do for work - by doctor’s verification and where applicable, orders, I can’t sit for very long, or stand for very long(15-30 minutes). I can’t lift anything over about 15 pounds, I can’t squat habitually, I can’t kneel, I can’t climb ladders or stairs. All of these things are detrimental to my health. I also can’t look down or look up for extended periods due to what’s called a Chiari Malformation - a part of my skull didn't form right and a small part of my brain, the cerebellar tonsils, have herniated down into my neck. Bending my head down or leaning it up applies pressure and tension in this area and triggers extreme migraines as well as other neurological symptoms. 

I have Reynaud’s Syndrome which causes my hands and feet to randomly go ice cold, blue purple and black, or sometimes bloodless white, and be completely numb. As if the Chiari didn't cause me issues with my grip let’s throw that in there too. If I worked a desk job, they’d need extra insurance against people having their eyes put out with the pencils and pens I would accidentally throw when trying to pick them up - although I don’t think there are many insurance policies that cover ‘pencil in the eye.’ 

I have arthritis in my knees, degenerative disc disease in my thoracic spine, scoliosis, the list goes on. 

Take all of this into consideration, and please, if you have ANY ideas… tell me what the hell I’m supposed to do for work. Because according to FSSA and the government? I’m not disabled. There are jobs out there I can do! WHO THE HELL IS GOING TO HIRE SOMEONE WHO IS GOING TO CALL OFF ANYWHERE FROM ONE TO TWELVE TIMES A MONTH?! AT RANDOM?! AFTER BEING FINE THE DAY BEFORE?!

Do you see my issue here? Do you see why I’m so continually pissed at the government for making me fight so hard for disability? The state government for taking my food stamps because I’m not working 30 hours a week? 

This has been my life since forever, only it’s been getting progressively worse. I have very little self worth because hey what the hell am I contributing to anything? I can’t even earn my keep, I can’t even contribute the $200 a month from food stamps to cover my food in lieu of rent to my parents! 

How in God’s name am I supposed to feel anything but utterly terrible about myself about things that aren't even my fault when my government is telling me I can do things that I can’t do? That I've never been able to do! I can’t even provide the necessities of life to myself! Everything I have my parents have bought for me - my food, my clothes, my phone, my furniture (except my bedroom set that I inherited from my grandmother). There are things that I literally need to try to improve my quality of life that I can’t get because I don’t have the money and neither do they! 

I just don’t understand how the government can look at the 2″ and change stack of medical records and tell me I can work, tell me I’m just being lazy, tell me I’m not worth the barely-able-to-be-lived-on monthly stipend they would give me. 

I also don’t understand how they don’t understand what that does to me. It makes me question my own sanity, whether I really am just crazy, that maybe all of this pain that I’ve lived with for 18 years is all in my head and I’m just screwed up enough to believe it’s real and if I just snapped out of it everything would be okay. But God I know that’s not true. I do. It just. I can’t. I don’t know what to do anymore. I’m in tears as I’m writing this because it just hurts so much. I don’t know what life is. I don’t.Because I've never had the opportunity to really live it. 

And I don’t know how to deal with that, either.

(P.S. I apologize for the somewhat disjointed A-to-Q-to-C nature of this post, my brain is just as much all over the place as this post.)