AnonymousMarch 3, 2007 at 5:41 pm
It’s been a long time, some of you know me as Nala or Emily. I quit posting around last August due to a relapse with my CIDP. It knocked me down pretty hard again. This time I was only in the hospital for 2 months, and only lost movement in my arms and legs instead of my whole body like last time.
Since then I have made another miraculous recovery! I have developed almost all of my physical abilities back, I even for the first time in 3 1/2 years have a normal gate again. The chemo Cytoxan, is what put me into remission the first time quit working for me, but weekly IVIG infusions and daily doses of Imuran are helping once again and seem to be holding me at bay. I have always thought that getting better is harder than being sick, and I am slowly regaining what little life I have left. Since the onset 3 1/2 years ago I have not been able to drive, and I am doing so good that I was able to get my driving permit a couple of weeks ago!
I wish you all the best of luck,
and good health!
AnonymousMarch 3, 2007 at 11:51 pm
It’s good to hear you’re doing better again. I got to know about you through your mom and through Pam H. I really do believe that we have hope and I really do believe that a cure can be found. Whenever you need understanding people to talk to, come back here.
Hugs to You.
AnonymousMarch 3, 2007 at 11:53 pm
It is so wonderful to see you posting again, & I am so glad that you were able to find what works best for you in terms of treatments. I always did wonder why IVIG had to be stopped when it had worked for you in the beginning of your illness. I know there was a reason at the time, but I can’t seem to remember it now. But since IVIG is working so well for you now, that must mean that you have the relapsing/remitting form of CIDP which I think is good. That is why you were able to get back so much function.
Wow, a normal gate, how unbelievable, I am happy just to be upright. CONGRATS on your permit, I used to teach drivers ed & always thought that the permit test was harder than the actual driving test. This last time when I had to retest, they didn’t even seem to notice that I drove with both feet! That will be your next step, & your ticket to more freedom. In the meantime, I would strongly recommend water aerobics, or some sort of working out at a gym. I go twice a week & feel it is so good for range of motion in all of my body parts. I have also met a lot of nice women as a bonus.
Look to your passions to get your life back. I have finally been able to take up my love of reading again. My husband & I have also been doing a lot of snowmobiling again since we finally got snow here in MN. I can’t wait for summer to spend lots of time at our lake cabin & cruise in the boat. My point is that life will never be what it once was, or could have been, but it can still be very very good.
March 4, 2007 at 12:11 am
I received a cute email from Pam and started wondering how you were doing. I came in here looking to pm ya and here I find you posting!
Sorry to hear about your relapse. Those stink but finding out you are beginning to drive again is wonderful news!! Driving gives one back so much independence that CIDP robs us of.
Once you get good enough, we’ll have to take a road trip:D
Take care and keep truckin’ along!
March 5, 2007 at 9:09 am
Dear Emily, congratulations on your recovery! I don’t know you, but each time I read these postings, I realize how everyone is a little family. My ten year old son has aidp or cidp we are still working on the Dx. I really did not want to be a part of this family but I am so grateful to get encouragement, help and info from all of these kind people! Keeep up the hard work and good luck to you! Dawn
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