Went to the hosp for tests this week. Two hours to get there, half hour wait to be tested, every step of the way I was reminded there was a copay due, which I had paid two weeks in advance(first time I had ever had to pay in advance) (wonder if I forgot I had paid and paid again would they refund the difference - enough for the sisters of mercy). Then after two hours of testing another two hours to get home.
The people were reasonably nice, yet the humiliation is lingering. Having ms is about dealing with the losses, if I lose my sight-I'll learn braille, if I lose use of my legs-I get a rolling chair etc. Now after more than 50yrs of ms I am watching the last of the money fly out the window. More than half my annual income is gone before the first of March. When I ask for assistance I am told I make too much money. I dont pay any income tax so there is nothing to get back. When I fist started betaseron back in 93 or 94 it was $900/mo now it is more than $5,100./mo and the copay rises each year but not income.
The exterior burdens of ms are bigger than the disease, at least with the disease you change change your mind set, how does one adapt to a increasing poverty that is not by government standards destitute, when one can not afford to move nor afford to stay where they are. When one needs to choose between eating and medication. Oh i KNOW, invite seven million (people) to share my abode and hope they chip in for expenses.
I know, one day at a time, maybe I am tired from the week's excursion, maybe reality has it's own weight, maybe i am getting ill, but the real world today is bleak and I wanted to share it because I am always working on cheering everyone up and wanted you all to know that I have gray days too, or just that I needed to say it out loud, or that i am feeling sorry for myself, or this is the best way I know to help get the thoughts out of my head, or perhaps today I just feel like being depressed, or all of the above. Needless to say, I am not in a good mood.