This is topic Update for John in forum General Support at LymeNet Flash.


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Posted by bryteeyez808080 (Member # 7923) on :
 
For those of you who remember me... It's been almost a year since I've been on. I haven't had the time or the money to keep up with the internet! I have been working as much as I can to support my sick husband and our 3 children.

BUT I'M BACK!!!!!!!!!!!

Well for those of you fighting for SSI or SSDI its possible! We finally started to get it and Its all retro from the day you apply. Im not going to lie they make it very hard for you!!!!!
It took a little over 2 years. But I was right there to help him and push him.

Now I have a little time each day to talk with all of you who I HAVE MISSED SOOOOOO MUCH!!!!!

John is doing better. He still has the paralysis on the right side of his body. It comes and goes. NOT AS MUCH. He is going to start the cognitive rehab soon. Once a week. He has started the Aracept (spelling??).

He still sees his ID she is great! If it wasn't for me finding LYMENET I never would have seeked for a Doctor that was lyme literate!

He has come a long way and is doing better than before. The last time I was on he was on IV rocephin but they stoped his treatment early because of sugnificant amounts of inflamation in his stomache. So they didnt want to take a chance.

Now he is battling the cognitive issues a lot! I seen it coming little but little. First the keys then going to the store to get some milk and not even getting to the store because he dont remember why he left the house.

He's not strong and not a fighter but I AM!!! I wont let this beat him! Dont let it beat you! For those of you that are like John I pray that you have someone to fight for you!!!!

Dont give up... You dont get better over night! You jump all these hurdles, but what happens when there are no more to jump???? I cant wait to see!

I want my husband better! I want all of you better! Someday, somewhere it will be!!!!

Joyce
 
Posted by lou (Member # 81) on :
 
Good for you joyce, and welcome back. Maybe when your husband starts seeing real progress, he will get some fight. Somebody has to have it, this is so difficult.

Maybe it would help to make a list of his symptoms and general condition when he started getting treatment and then compare every now and then. Some docs have a list of symptoms and every visit you check the ones and rank the severity with a number from one to ten, or whatever. Would this work for you, I wonder? If your doc doesn't do this, could make your own list (there's one in the newby links, I think) and then put a column for numbers. Have a sheet for each time, or you could have a lot of columns and then just date each column, then can compare on one page.

Or if your doc does this, ask them to make a copy for you each visit. That way, progress is documented.
 
Posted by pq (Member # 6886) on :
 
Bry,

First time I've seen you on board. Welcome!
Happy to hear that you've finally got some relief.

I stubbornly refused to apply for about two years, until I could no longer do so. sorry I did.
I did get it "relatively" soon after applying, along with the attitudinally imperious insults, and the like.
 
Posted by Angela Bachmann (Member # 43) on :
 
Hi,

I don't know if you've seen it or not, but right at the top on Medical is a lot of wonderful information for newbies. I know you're not new......but maybe it'll help you catch up.

So glad to have you on the forum......wish you the best of luck.

[hi]
 
Posted by bettyg (Member # 6147) on :
 
Joyce,

Glad John has you there pushing constantly to get things done. John is lucky to have YOU!

It took me 5 long years to get SSDI benefits; they went back 3 years...not 5!

bettyg
 
Posted by pab (Member # 904) on :
 
quote:
Originally posted by bettyg:
Joyce,
John is lucky to have YOU!
bettyg

I totally agree [Smile]
 
Posted by bryteeyez808080 (Member # 7923) on :
 
Thanks everybody!!! I'm just so glad to be back!
Joyce
 


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