stilljennifer
Member
- Joined
- Jul 29, 2010
- Messages
- 27
- Reason
- Learn about ALS
- Diagnosis
- 07/2010
- Country
- US
- State
- Alabama
- City
- Northport
My counselor says I should be here so I am. It's not that I don't like any of you. Actually I like some of you a whole lot. I just don't want to be here.
So my neurologist (who keeps saying I have PLS) sent me to UAB who called me back again today after I finally sent my records. He called me twice actually. He also put some dude on my case who calls me and tells me what to do. He said I am presenting with a lot of issues. Oh really? Google this. Weakness, pain, and fasciculations. Oh wow, we see/hear that all of the time, right? Then add in autonomic dysfunction.... bradycardia and tachycardia. Oh yeah, don't forget Supra-ventricular tachycardia... but shhhhhh! Nobody knows. Oh and the one that I get teased about the most that only ONE person knows (my husband outside of the doc who told me)... I have cognitive decline... so bad that I qualify for disability... so bad that my functioning IQ is 20 plus points below my IQ.
Yes.
You got that right. That's why my counselor wants me here. Nobody knows. I'm tired of telling anyone. I'm tired of IT. I'm tired of being tired. I don't want pity, confused looks...I AM CONFUSED. How am I supposed to counsel/support them?
Anyway, I see her every two weeks now. She keeps telling me I have to think of my health in all of my decisions. My husband wants to take care of me. I don't want him to. I don't want him to see me get worse. He has already seen some of it.
So I am here and apparently whether you guys want me here or not (feel free to kick me out, Al, I tried to get my doctor to fire me today, too)....
But they wouldn't. Instead I get a team. A team. I get a team and a new EMG... Thursday... along with twenty something blood tests... along with a person on my case. I HATE THIS. I DIDN'T ASK FOR THIS. I tried so hard to get out of this. I even wrote him a letter and asked him to postpone it when I sent my records. Instead I get a freaking team. I think I'm going to go find a nice pile of sand that I can put my head into.
This is my last doctor. If he can't help me, forget it. I'll just get my teeth cleaned, my gyno visit and take my vitamins.
So my neurologist (who keeps saying I have PLS) sent me to UAB who called me back again today after I finally sent my records. He called me twice actually. He also put some dude on my case who calls me and tells me what to do. He said I am presenting with a lot of issues. Oh really? Google this. Weakness, pain, and fasciculations. Oh wow, we see/hear that all of the time, right? Then add in autonomic dysfunction.... bradycardia and tachycardia. Oh yeah, don't forget Supra-ventricular tachycardia... but shhhhhh! Nobody knows. Oh and the one that I get teased about the most that only ONE person knows (my husband outside of the doc who told me)... I have cognitive decline... so bad that I qualify for disability... so bad that my functioning IQ is 20 plus points below my IQ.
Yes.
You got that right. That's why my counselor wants me here. Nobody knows. I'm tired of telling anyone. I'm tired of IT. I'm tired of being tired. I don't want pity, confused looks...I AM CONFUSED. How am I supposed to counsel/support them?
Anyway, I see her every two weeks now. She keeps telling me I have to think of my health in all of my decisions. My husband wants to take care of me. I don't want him to. I don't want him to see me get worse. He has already seen some of it.
So I am here and apparently whether you guys want me here or not (feel free to kick me out, Al, I tried to get my doctor to fire me today, too)....
But they wouldn't. Instead I get a team. A team. I get a team and a new EMG... Thursday... along with twenty something blood tests... along with a person on my case. I HATE THIS. I DIDN'T ASK FOR THIS. I tried so hard to get out of this. I even wrote him a letter and asked him to postpone it when I sent my records. Instead I get a freaking team. I think I'm going to go find a nice pile of sand that I can put my head into.
This is my last doctor. If he can't help me, forget it. I'll just get my teeth cleaned, my gyno visit and take my vitamins.