10:23 PMRead On 3 comments
In order to access government programs for individuals with disabilities and/or serious health conditions I have been doing a lot of the Red Tape Rumba. The paperwork alone must be designed to weed out those who are not committed enough to accessing help because it is a beast all its own. I am waiting for them to ask for a DNA sample at some point soon. I had my hearing with the social security judge a few weeks ago and at the hearing she was visibly torn about what to do in my case. The problem is that with an undiagnosed neurological condition, I don't fit neatly into any of the categories social security offers. Dystonia and Dysautonomia apparently don't have categories either. So she grabbed on to the fact that one doctor said it could have psychiatric roots and decided she wanted to categorize me as having somatization disorder. Only one problem. I am not under the treatment of a psychiatrist, because I don't need one. So she decides to send me to see a psychiatrist who turns out to be very nice and the good news is that I am perfectly sane - or as sane as anyone who is fighting with the government can be. The psychiatrist was puzzled as to why the judge sent me to her as it was "obvious" that I had "multiple serious medical conditions". So now I am waiting for the judge to get the report and then make a decision. I am trying to have faith that she will recognize that if I were able to work I would do so, as I miss teaching so very much, and determine a way to categorize my disability.
Because my COBRA ran out, I have been living without health insurance since February. I applied for Medicaid under a program for the medically disabled. They decided I needed to be seen by their doctor to determine if I am disabled or not. That doctor's office was a very sketchy place - I was so glad that I wear wheelchair gloves because the floor alone looked like a crime scene with weird stains and substances. The doctor turned out to be a nice guy, and I think he was a Christian because he told me to have a blessed day when I was finished. He did a basic exam and basic neuro exam and said that this was "straight forward" and "obvious" and that he will "never understand the government". So I am prayerfully hoping that this means I will qualify for Medicaid as their doctor agrees I am disabled. I also pray that I do not have to do a huge spend down each month before Medicaid kicks in.
Medically, I am noticing that the weakness is progressing slowly. The distance I can push myself in my wheelchair has been greatly reduced over what I could do a year ago, and I have more issues with tight muscles in my lower back and hands now that I never had before. Of course, my medications have been all changed around due to cost so that may have something to do with it. One medication cost $25 per pill!! That is insane!!
I am going to try and keep this updated more and with more of my regular writing and less strictly medical stuff but I can not make any promises. I don't even know if anyone reads this anymore :) But it is helpful for me to write things out so I will continue for now.
Blessings to you for reading and caring!