I have had a couple of really rough days and nights. I have been on the computer as long as my body will let me sit here, and my fingers type. I found alot of resources on the Muscular Dystrophy site, since MG is a neuromuscular disease. I am going to call the SS dept on Tuesday and talk to them about getting help with my meds.I have also went on PPA, need to finish the forms and submit them.
I have even looked into signing myself into a clinical study for MG. I went on Yale site, and they don't have any for MG at this time. Although Yale is one of the few places I researched that deals with neurological diseases that cause fatiguable muscles.
I was really getting discouraged, and I went on the White House site, and sent President Obama an email. I just told him exactly how I felt, and I was crying so much I don't remember everything I said, but I do remember saying if I have to live like this.....well then I don't want to.
Today I got a call from a woman from a SS office in Maryville Tn. She asked if I had written an email to the White House, and I didn't want to live like this? I said yes....She gave me her direct line and the suicide hot line #. She will be looking into my case on Tuesday...
She knew it was in the appeals state, federal level, as the judge has already denied me. I felt like because I lost my job, due to illness, and couldn't go to the doctors to have enough records to satisify the judge, and in his words "you looked and sounded fine".
I don't know what this will bring about, but I have never been a quitter, and God knew I was about to quit. So He is sending hope my way, that I CAN keep fighting!!!! So I am at this moment happier than I have been since I recieved my denial letter in Jan of this year.....
It has given me my second wind, so to speak......I have hope that they will help me get connected to resources, services to help me get to the best possible me I can be.. I don't want handouts either. I want to help...in some way....in someone's life.
I had to tell all of you who replied to my posts with such positive thoughts....THANK YOU, THANK YOU, THANK YOU!!
Hopefully when Mrs. Ballard calls me on Tuesday I will have even greater news....right now, I Thank God for this forum, and the blessings He has given me....
Signing off....in a wonderful state......of mind