Bringing CIDP under control

hey bro,
I know CIDP. We been fighting for 8 years. Last year was the first one that I spent in a wheelchair in the house. So I been getting worse over the years. I’m stronger now than I was 6 mo. ago, but weaker than I was 3 mo. ago… I was off the IVIG for over a year during that time. I’m back on it and just switched neuo….Things are looking up for me. Looks like I will have a chance to try the Rituxan.
I’ll let ya know if it works for me. for sure.

Its like this. Without modern meds, I’d not be in this plane. So everyday I wake up is really a bonus day. My numbers been up for awhile ya know. I put on some tunes, play my bass guitar, enjoy the good, put the bad vibes away. Just waiting on my time to join the Big Sky Band. Hear that Thunder? Somebody playing the mother of bass amps. When I’m gone and you hear that thunder, you’ll know its me. Cause it’ll be loud, and you’ll feel it in your gut.
Don’t worry so much about a tomorrow you may never see, enjoy the day you have the best you can. Tomorrow may even bring something good, happens all the time.
Thump it Boss

BOOM chaka laka BOOM BOOM

Ain’t it good to be alive and be in Tennessee.
Charlie Daniels said that.
Hell ya.
I said that.

(link deleted by administration)

cd,

I am older then your daughter I am sure (36) but that describes my situation pretty well also. I was in college and working when this happened and CIDP took my life away from me. In the beginning it was very, very hard for me, thankfully I found this place. If you want to email me or put your daughter in touch with me [EMAIL=”jerimyschilz@hotmail.com”]jerimyschilz@hotmail.com[/EMAIL] , either way. I have information on assistance, social security, all of that fun stuff. I was approved for SSD and SSI after 2 years and have a retroactive check coming plus I get my monthly checks now.

I can’t begin to explain how your daughter is feeling but since CIDP is so variable, with me I know each little thing from my old life I can get back, the better I do. I am taking online college courses through University of Phoenix, maybe she can do that?? It’s all online and though it’s expensive, being disabled I was able to get everything free basically.

I could babble on more but feel free to contact me or have her contact me and I will help however I can. Take care and please tell her for me that it does get better and my thoughts and prayers are with her.

Jerimy

[quote=compactdisc]Codystanley captured the essence of the Big Question that is ever present in the back of my (and my daughter’s) mind with this line quoted from another thread:

“If you still have good days and bad days (progressing or having relapse/remittence)…….until CIDP is brought under control”.

We have known nothing else since Oct 05 – within a few weeks of an ivig infusion, she relapses, with each more difficult to recover from. During those times after an infusion, when she feels good, we “think” it is under control, and hopefully getting better. It’s becoming difficult to be optimistic. She has dropped out of college, lost her job, doesn’t qualify for unemployment or ss disability (yet). She rarely leaves the house except to go to the hospital.

What experiences are those of you with cidp for several years having? Is there a point where we can say things are “under control”?

Thanks for listening – I guess it’s just one of those days.

cd[/quote]

cd,
theres ur angel. Jer, ur a good feller. I’d cross the desert to bring you a drink.

I think on-line courses are an excellent idea… The ones I have taken were not like “correspondence courses”… We had to do class projects and we had class discussions and it was really fun… The added bonus is that you may have a “classmate” on the other side of the world… 😎

I’m wishing you both all the best…
Aimee

CD,

I wish your daughter all the best. Sounds to me like her issues are similar to mine. For me it is just day to day and enjoy the good ones. Soapy said it best, my new sig line.