Dawn Kevies Mom
Dawn Kevies mom
AnonymousJune 13, 2008 at 8:58 pm
Hello and thanks for asking about me. Have had a fair bit of trouble the last three weeks. Go for a complete GI scope on the 24th.
Will ask Neuro on the 23rd if I am being unreasonable in my expectations. I keep thinking after every treatment that i will return to at least 75-80% of my pre-cidp self. So far I am at ? 30%. So each time, I am delighted at the little progress I make, but disappointed that it isn’t more.
I can walk in the house without the walker. Still not able to do much around the house, fixing meals, etc. Use walker or power chair for anything not at home. Can not drive yet. Without Dave would be in a Skilled Facility. Whine, whine, whine. I really do appreciate the improvements and do find five things or more to thank God for each day.
I feel that you are the one that always has such wonderful advise and is always upbeat. I really appreciate your mails.
AnonymousJune 13, 2008 at 10:29 pm
Blskat1 – Just wanted to butt in here. Remember that it’s going to take some time to get back to 75-80%. I know it’s frustrating. I really do. But remember that the meds have to control the bad anti-bodies from your immune system & then your body will slowly start to recover. I think it’s something like 14 inches a year that the myelin recovers (I think that’s what Dawn told me). It’ll take a while & just know that every little improvement will one day add up to be one big gigantic improvement.
It has to be so frustrating to want to be able to do something but you just can’t. It would drive me absolutely freakin’ insane. My heart goes out to you but remember that you WILL get there.
AnonymousJune 15, 2008 at 3:06 am
Are you having just the stomach scope?? I had the colon scope last year and the medicine to “clean me out” throw me for a loop. It was hard on my whole body and I needed fluids before the procedure by concerned staff nurses. Actually had a time recovery from what used to be simple years earlier. Showed me how sensitive I was now.
May 2005 I was homebound by sheer pain and fatigue. After over 200 IVIG infusions I can walk in my neighborhood on a good day. I literally went from using two forearm crutches to planting flowers in my yard-in three years.
I have a post on the CIDP page called “Three years IVIG” posted 3 weeks ago. It tells more about how far I have come when I had nothing left to give but being stubborn and refusing to not keep trying.
Glad you have support and a diagnosis.Yes, every little improvement is wonderful.
AnonymousJune 17, 2008 at 11:12 pm
Thanks for the encouraging words. I know what you say is true and I have to give it more time. I just get discouraged at times and then have to straighten up my boot straps again and get on with it. I used t have so much energy and enthusian. Now have to struggle to do anything and it takes 100 times longer.
Will start back at the pool once the neck vein cath is removed and site healed.
Just reallly wanted to say thanks to y ou two and everyone else that has held out a hand to me and given me encouragement.
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