I finally met with Social Security in person today. I was rather pitiful, although that was probably a good thing in this case.
I was on the roller walker and would not have made it without it. Almost needed assistance getting out of the chair, and couldn't handle the lights...had to put on my sunglasses in the middle of the interview. My mother and uncle stepped up on my behalf via telephone as well.
So, fingers crossed. I will share more about the process as it happens.
In other news, no more YouTube video blogs for me. Too many creeps on the internet. The last straw was a series of messages from a man who made sexual remarks about my paralysis. Anyone who knows me knows how bad of an idea that is. I don't think it's funny or harmless. I think it is extremely violating, and I hope that person is not really the sicko that he genuinely appeared to be.
It's a messed up world out there. Be safe, everyone.
Saturday, September 22, 2012
Monday, September 17, 2012
A couple weeks ago, I went back to University of Mississippi Medical Center in Jackson to meet with the Muscular Dystrophy team. It was a long day, as we didn't travel up there the night before like we usually do. We decided to leave before dawn the day of. I arrived at appointment time, but it was noon before I saw a doctor. Pretty common, really, as it is always packed. Being the only MDA clinic in the state, it's a wonder the crowd isn't larger.
While I was waiting, the MDA advocates came in the room and introduced themselves. The turnover is apparently fairly high, and this is the third set of reps I've met since first going there not even a year and a half ago. They were super, super nice and responded to my questions and concerns as best as they could in the amount of time we had. I had no voice (still don't), which made the day more challenging, but I managed a whisper that most folks could understand.
Dr. W came in and we discussed my recent hospital event. She documented everything I told her, and while she had no solution to my esophageal/vocal cord episodes, she did decide to increase my potassium intake yet again to see if I improved any. She also let me know that my Vitamin D was low, and prescribed 50,000 units a week. It's aggravating that I wasn't told about this six months ago. They waited until my bi-annual evaluation to say "oh by the way" instead of calling me in March with a script. Six months! Incredible drop of the ball there, but I didn't fuss at anybody.
That's pretty much it. No further tests or ideas for improvement, just documentation and experimentation with the meds. They consider this a permanent situation, as I've said before, and this appointment only further confirmed it.
Next trip to Jackson is in November, when I will meet with Dr. F, the Nephrologist/Internal Medicine specialist, for new labs and a consultation.
In other news, I was given a wonderful gift recently...a rolling walker. I am obviously not happy that I need such a thing in my 30's, but it has made life easier and for that I am grateful.
Whatever keeps the 'ol sanity intact, people.