Fatigue, Balance, Spasticity, SSI Benefits

What a week… What… a… week… I guess we can start with my SSI benefits (Social Security Income). I got a letter in the mail informing me that I had to go to a “meeting” to review my SSI eligibility; in layman’s terms? They wanted to have me come in so they could find a way to deny me. I had to bring in bank statements for the last 6 months and once I printed them out and reviewed them I started stressing out over stupid stuff I was sure they would try to deny me for. “I see you have been to Panda Express a few times, if your spending money on eating out, then clearly you don’t need benefits”. Plus there were a few transactions from my travels I did not hide very well with the ever so untraceable cash… On top of that, I imagined they would take one look at me and assume “well you look OK so you must not have any type of disability” as most people assume regardless of the fact that cognitive disfunction, fatigue, and vision loss do not turn me bright blue to indicate something is wrong.

So I decided that because I am so close to getting back up on my own two feet and supporting myself I couldn’t afford to loose my benefits which would make it near impossible to make it to the “finish line” of independence. So I went to bed a little later than usual. My symptoms are sensitive to poor sleep. I also may have drank a decent amount of water before bed so I would have to keep getting up throughout the night to use the restroom… I was so tired when I woke up… I canceled my physical therapy appointment because I was just too out of whack. My balance felt funny and my legs were a tad tight. The lack of sleep and stress of what life would be like if I lost my SSI benefits right now really screwed me up but I didn’t need them to see me on a good day and assume that’s how I always am. It was bad I know but I couldn’t risk being denied…

I got to the social security office at 1:50pm; my appointment was at 2:00pm. I got a ticket with a number, sat down, and waited to hear my name at the door or see my number on the screen. The place was packed! One guy made a scene at got escorted out by security. STRESS. 5 minutes… 10 minutes… 20 minutes… 45 minutes… Then the security guard announced that they are so busy some of us might have to come back the next day. Great. That’s going to be me… But no, 15 minutes till closing and they called my name. I headed back through “door 9” and could see that all the employees were trying to wrap things up so they could go home. I sat down with the guy reviewing my case who asked for my bank statements. As I handed them to him and prepared my elaborate story to answer for the transactions obviously made in a different country, he told me he was just skimming through to see if there were any substantial deposits. He asked if I had a life insurance policy, investments, etc, and told me I should see a slight increase in how much I get for cost of living adjustments. Then he said have a good day…

I am not complaining but… I WAY OVER PREPARED AND STRESSED MYSELF OUT! I was in and out of that room in three minutes and he never even made eye contact let alone judge me or skim through my bank statements with a fine brush! So that was good, I still have my benefits after all that! It took me a couple days to “recover” from the sleepless night and stress of it all but everything is good now (as far as I can tell, knock on wood). Now I will turn my focus back to doing well in physical therapy, starting school, getting back into photography, and starting a speaking career so that maybe by next year I won’t have to go back to that stupid social security office because I will be supporting myself again and not needing government assistance.

Fingers crossed!

6 thoughts on “Fatigue, Balance, Spasticity, SSI Benefits

  • January 9, 2014 at 1:30 am
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    Matt, I know you know a million times more than I about Ms, and the whole disability issues. I have SDI, Do you have SSI? I was told since I had SDI , my case would come up for review in 7 years. IF I had gotten SSI it would be every 6 months..I have not been on my disability for 6 months yet..just wondering if anything was coming I need to prepare for. I have no one to ask and All my ducks are in a row I guess, but it takes me a while to get paperwork ready and stresses me out so I end up with major dystonina and I hate that… half the time I cant see most of it!

    Any way, thanks ..

    think of you often. Sending well wishes
    Jeff

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  • January 9, 2014 at 2:05 am
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    Hi! I am on SSI, was denied twice for SDI, I guess the computer thought I could operate a sewing machine so I was denied… … … ANYWAYS, I don't know much about SSI or SSDI other than everyone says you have to pretty much lie to NOT get denied… They say to be your worst not your best or else they deny you… I hate the way it works but it's true, they WANT to deny you because that means they have THAT much more money… Get an attorney, most don't charge unless they win your case…

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    • January 24, 2014 at 1:09 am
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      Matt,
      Thank you so much for your reply. I have been just laid out for so long I forgot I asked you a question..ugh! I even forgot I had been reading your blog for the past year or so..I was reminded by a friend when I was wondering about things I felt.. Thank you so much for always ( as you always have) put fourth the effort to answer my questions regardless of how you are feeling.
      Well I received SSDI from the get go and I only had to take a 4 hour memory test thing.. I made a remark that it was invented for chimps..that didn't go over well..I thought it was funny. And they approved me anyway.
      So I applaud your efforts in writing this blog and for always pushing yourself towards independence.

      You totally rock!

      Reply
  • January 26, 2014 at 5:42 pm
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    haha I think it depends on WHO you are dealing with because from what I have heard from other's, that comment would be an automatic "FAIL" haha so glad you got it anyways!

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  • December 9, 2014 at 9:40 am
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    Just lost all I wrote before. Aarrggg. My pitty party for my official MS diagnosis will be Wed. Oscillopsia really messing with my life. using my walker room to room (including the john). 9 months ago I could drive all over the place. Anaheim 23years. Santa Barbara 10 years
    now my heart is in WASHINGTON

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  • December 10, 2014 at 4:29 pm
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    I was looking at Washington before I tried Colorado but I learned it's true, HEART IS WHERE THE HOME IS, and I don't love California but there are certain people I have come to realise I can't live without.

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