Writing, Prednisone, SSI and Wii Fit

OK this post is going to be broken up kind of weird; I have been writing little notes on sticky notes to remind me of what I want to mention here because my blog has been so uninformative for the last year or so, I just can’t seem to sit down at the end of the day and remember everything that happened so I’ll be trying to explore new blogging “techniques” to hopefully make things more interesting…

First of all, speaking of sticky notes, it became pretty obvious yesterday that my hand writing is getting much worse. I think my fine motor skills have really fallen apart because just holding the pen feels weird now; when I try to write a letter it’s like I am trying to write with a pen simply gripped in a fist! If I was trying to draw a line on the inside of a coloring book maze it’s like I just can’t do it and my line is all over the place! So writing legible characters in a straight line and not diagonally across the paper in various sized letters is not so easy anymore…

OK, let’s move on to how I have been and how my health is going. I felt like I was falling apart and I told my doctor that I was not even sure anymore if I was relapsing or if this was just the heat or what. He wanted to put me on IV steroids but I decided (since they have not really done anything for me in years) that we might as well try Prednisone so I would not have to leave the house and deal with the heat as well as try to arrange a ride. I forgot how much Prednisone sucks and I am only doing a 4mg tablet plan! This is actually the name brand, MethylPREDNISolone, so I thin they are coated or something because they don’t taste horrible like what I remember from many years ago. The worst part though is, according to the little dosing protocol thing, I have had to take a dose right before bed and wow have I had the worst insomnia for the last couple of nights, even with Tylenol PM! So tonight I am definitely taking cannabis oil to help me sleep because I can’t do this “up till 3am” garbage!

I am not sure if this was the Prednisone or not but I woke up feeling kind of sick yesterday… Prednisone has immunosuppressive effects and when your immune system is already a little suppressed from something like Lemtrada I suppose that would make you more susceptible to getting sick? Well, luckily I woke up feeling fine today so who knows, either I somehow fought it off or it was just nothing.

Oh yeah, news on the SSI mess I have been in. A while ago they asked me to submit my bills so they could determine if I make enough money to pay them all the SSI they gave me back. I sent in a huge stack of bills and collection notices as well as info for all my monthly bills. Considering how little income I have, I owe (not including SSI) way more than I bring in. I even made sure to let them know how much money I have to borrow to pay my bills on time. Well after a few months of not hearing from them they sent me a letter telling me to please call so they could talk to me about “an important matter”. I called the number and… it was an automated line to set up a payment plan. Damn, I can’t imagine anyone is ever determined to not be in a financial position to pay back huge sums of money! Well, I guess they helped me answer the question of whether or not I should file for bankruptcy, I can’t even keep my head above water in the world of healthcare debt! So I am 26 and have to file for bankruptcy, something that will be a huge mark on my life and it is not even my fault; I didn’t manage my money poorly or anything like that, I just got sick… How dare me…

Let’s end on a more positive note; I bought a Wii fit on eBay the other day. I was re-reading an article about how physical therapist are using the Wii fit in therapy, specifically vestibular therapy for balance. Hey that’s my problem! At this point I will try anything… I do like it so far, I mean everything is so difficult but because it displays everything as numbers and it’s a game my competitive nature takes over and I have to keep trying till I get it right because I need to win! Well so far it says I have the body of a 45 year old who is not in shape so I have some work to do… But at the moment even simple yoga stuff is too hard! There is a platform you have to stand on so it can tell what you are doing and I keep losing my balance and falling off, frustrating! So we will see in a month or two if I am improving or not. If you are unfamiliar with Wii Fit here is a video about it, below I have also included a link on it’s use for physical therapy.


Matt Allen G

I was diagnosed with Multiple Sclerosis (MS) in 2010 at the age of 20. It's been a battle ever since and I have always shared my story and struggles online!

3 thoughts on “Writing, Prednisone, SSI and Wii Fit

  • August 12, 2016 at 4:32 pm

    I’m still curious as to how they decided that you were not disabled. This makes me afraid to even attempt to get disability in the future.

    • August 12, 2016 at 5:21 pm

      I honestly don’t know, someone reviewed my case (that didn’t work for the social security administration) to try to help me figure out what was going on and she said it looked like they found a technicality in the paperwork that they basically saw as a way out of having to pay…

      • August 13, 2016 at 2:51 am

        Matt, find yourself a social security disability lawyer. I used one and the process was easy. They got me ss and their fee came out of the payment received. It took a few months but took so much stress off me. Research and find a good one so you don’t get ripped off. Good luck.


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