Wednesday, February 27, 2013

Why I have been absent... again...

Full moon coupled with a blizzard. Okay, so I know it doesn't explain the entire month, but it does explain at least one full week.
Out my front window

This month has been full of fighting. I had an evaluation done by a SSA appointed doctor to see if I am capable of working. She had 4 weeks to report her findings. That puts us at this week. I had to fight with one of my doctor's receptionist to get my records sent to SSA. I don't think she believes in disability so she has done her best to inconvenience me in the process. My lawyer said that SSA requested the records 5 months ago (4 months when I had to start calling everyday begging for her to send my records. Apparently she was quite upset that I had over 90 pages in my file. Finally, I got so stressed that I called crying and demanding to talk to the nurse. I told her without SSDI, I cannot afford to come in for anymore treatment. SSA had the files within a few days.) And with this stupid crap congress keeps dreaming up, this time the sequester, it may be an added 6 months before anything can be done to help me. I feel like the world is doing it's best to keep me sick. I mean, I don't want to live on welfare, but at this point, it is my only option to treat and get back to a life where I CAN work. I am so sick and tired of the stupid memes saying "I want a picture of the inner city family I am supporting with my taxes" they seem to always be posted by people who claim to be Christian. I wonder how they feel about Jesus teaching to care for the poor and sick even when they don't feel like it. I am tired of the media portraying me as lazy. I am not, I am anything but. It's just that right now, I am working my ass off to keep meds and food down. It ways heavily on my mind. One, no matter how strong, can only be told something a limited number of times, before (s)he begins to believe it.

There is much I would like to do. (Let's not talk about work for a minute, because we all know, I desperately want to work.) These are the activities I want to do but for physical or neurological reasons, cannot do daily:
read books and plays
write blog posts, the two plays I have started, emails to friends
draw
design
learn an instrument
learn to sing
cook/bake

Now, I am not just sitting on my ass everyday. I usually have Netflix or Hulu on to keep me company, but I am honestly so incredibly bored of watching a screen. I wake up tired and work diligently to make some type of breakfast so I can take my pills. My breakfast pills make me ill. I can't lay down or my stomach gets worse. I am exhausted from not sleeping well and getting up early so I have enough time to take all my meds as many of them cannot be taken within 2 or 4 hours of others. My throat has problems. I am not sure why but swallowing food is hard and the pills require lots of water. I often spend the after breakfast hour near the bathroom so I don't have to worry as much about walking to get there (remember all that water?) By the time my stomach has calmed down, it's time for lunch and the whole thing begins again.  And then repeat for dinner, and then wait to go to bed (remember, no laying down after pills), where I know nightmares and bad sleep await.

Here is what my week looks like in meds.
This isn't all of them, it is just the ones I take at meals. I am short some doxy, because for whatever reason the inhumane drug company stopped production on it for a month, driving the cost up from 10 bucks for a month for me to over $700!

In the meantime, I continue fighting with my meds, drug companies, doctors, and the general concept that being sick means being lazy. Somehow, in the moments in between, I might fit in something of myself. I am fighting to maintain my own self. Even if just for a few minutes each day, I try to do something from the list up there. Hopefully I will be well enough to write again soon.