Saturday, October 20, 2012

Social Security Update: Approved


This is cross-posted from my personal blog. I was going to edit it so it didn't sound so despairing, but it is what it is and I really have nothing to lose in sharing how I feel about it. I'm angry and it shows in this entry. Fair warning. My disclaimer, however, is that this is only my story...it is not intended to discourage HKPP patients from applying for assistance. Everybody's abilities and circumstances vary, as I'm sure you are already aware.

My recent visit to the Social Security office was successful. With detailed documentation, and my visibly obvious condition, I was declared disabled effective immediately. Once SSA got back on track and processed my application properly, it was an open and shut case just as one of my doctors said it would be. I have Medicaid now and will give a review here once I use it.

That's the good news.

The bad news...very bad news...is that they have only awarded me $65 a month. They calculated this based on my current living arrangements (rent free, because hello...I'm broke). Forced to quit all of my jobs and drop out of college thanks to a debilitating disease that I was born with, and I get a whopping sixty-five bucks a month to live on.

I don't even know what to say to that. Doomed? That's a pretty accurate word. Once my aunt and uncle step out of the picture as caregivers, I assume based on the lack of consideration I have received since this began over 20 years ago that I will have no other relatives to turn to.

So what's next? Only God knows. All I know is that I didn't ask for this BS. Never have and never will. I have fought people tooth and nail to be believed in order to receive the medical help I needed to keep this disease at bay for as long as possible. Yet, here I am not even 35 years old at what feels like the near-end of the rope. I have battled my own body since childhood with one goal in mind - to be completely independent. I despise with every fiber of my being a life of relying on others to meet my needs, and at the present time there is no hope in sight of that ever changing. I will never accept it.

That is all I have to say right now. Again, I am simply sharing my personal journey and it is not meant to be a doomsday speech to anyone with this condition.

I will be back to explain, in detail, my social security application process in hopes that it will help others to get the assistance they are seeking in a timely manner.

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