Monday, August 27, 2012

REALLY?!? like, seriously?

I am really nervous today, and honestly pretty pissed off.
    Why am I nervous, you may ask..My disability hearing is in 6 hours. My attorney said that the only reason she can even fathom why I was denied at all in the first place has to be due to my age. That's good. It doesn't stop me from feeling a bit anxious though, if this doesn't go well, I'm screwed, I don't know how we will be able to get by.
    I am pissed off because SOMEONE came over to the house yesterday, while my wife and I were not home, and was let in by our teen aged son and his cousin..and this person went in my room and went through all of our stuff, threw my stuff from the closet onto the floor, which ripped the binding halfway off my FIRST PRINTING of TOM "effing" SAWYER! Needless to say, I am NOT in a good mood at all.
 Things are going pretty good around here lately,(other than the previous mentioned atrocity.)  I have been doing a lot of research and asking questions, trying to learn all I can about what is going on in my body. The three things I have been most troubled by lately are some serious issues with being tired and having trouble standing sometimes, also chorea. If you don't know what that is, I can explain in simple terms for limbs hate me. They jerk and twitch, I can't control them sometimes, especially when I am tired..which is always, or trying to go to sleep at night..that's real fun, I have almost smacked my wife and myself in the face a couple of times, last night my arm decided it didn't like me anymore, and was going to try to rip itself free from my shoulder by jerking backwards and contorting painfully into a pretzel...WEEEEEEEEEEEE!
  I am going to post again today, after my hearing..let you know how I think it went..wish me luck!
  I have to remember.....I have APS, APS does NOT have me.

Wednesday, August 1, 2012

Where am I headed?

The last time I posted I was going through a really rough spot in my life, like I really needed more of that. But there is a light at the end of that tunnel, my wife and I are trying to work things out, and I couldnt be happier!
 I do have more medical stuff I have been learning about that I have, Ehlers Danlos, for instance..When you have an autoimmune disorder, it usually comes with a "friend".
Ehlers Danlos, or EDS, is a connective tissue disorder, which means my body doesn't have the collagen it needs to hold joints together correctly..I am "double jointed" or to be more correct, have hyper mobility. Which sounds fun, and it is sometimes, but, not always..I have bad joints, they hurt so bad all the time, and I have many problems with hyperextending joints and dislocations..I am luckier than some though, some of my friends are worse than I am, some have more problems. Many are either in wheel chairs, or using a walker. I'm not there..yet.
   Which leads me to the question..where am I headed?
I keep having troubles with my health, its not getting better. That is very scary sometimes. I had to go to the ER today in fact because I couldn't breath, and my heart was beating so softly my wife could barely even feel it when she pressed her head against my chest. I couldn't think straight, and was very, very tired. I was given a shot of a fast acting steroid to help me quickly, but I think I need a higher dose of my normal medication for this problem.
 I have learned that this can lead to a lot of the problems I've had and didn't even realize were related...Moodiness(read that as bitchiness,lol), passing out,lethargy, breaking out in sweats to name a few.
 My hearingg to decide if I will get disability is in a few weeks, and to be honest, I am scared. I cant work, it only pushes me even faster to my grave, but I have to have something going to help with finances. I don't feel like a man right now because I cant do that by working anymore. It was a real blow to me when I came to the realization that I wouldn't be able to work any longer. That was a huge part of my identity, the provider..I took care of my wife, I worked hard and was on my way to a really good position for the company I was working for..All gone now. I am still a Daddy..and I love that..I am still a husband, and I love that as well..but part of me is missing, and Ill never get that back. I mourn for that part often.
So, where am I headed? Well, I don't know. I am here with my wife, my family ..where I belong..that lifts my spirits so much..but my health is such a question mark. I fight with all I have..sometimes it isn't very much, but I haven't given up, not yet.
I have APS, APS does NOT have me!