three year anniversary
AnonymousMay 16, 2008 at 11:15 am
Well, it’s been three years and probably the most difficult years of my life and, in some ways, the richest. Since my second year I have gone back into the wheelchair, upped my meds to the max for neurontin and gone on oxycontin. Yesterday, for some reason, I forgot to take my meds and by 4 in the afternoon the awful pain and burning in my feet was almost unbearable. I then remembered to take them but I could not believe that, missing two doses, brought back pain I only experienced in the hospital. I also begain to run a fever and was very sick. It was very discouraging. I slept 9 hours and feel better today.
And I persevere. I rearranged my house, which we could not sell, so I don’t have to walk steps and everything is close at hand. That helps a lot with pain and fatigue. I am getting smarter about my own limits. I was also priviledged to give a talk on residuals posted in the main forum which I am pleased so many enjoyed. I certainly learned a lot from doing it.
My best wishes to all of you on my anniversary and hope you will all improve in the coming year. Have a glass of champagne on me today. Jeff
AnonymousMay 16, 2008 at 2:47 pm
Jeff, I think I’ll opt for a chardonnay instead of the champagne.
I read your comments from the Denver meeting on residuals. I, too, am 3 years away from being diagnosed. I will be seeing a neuro in June. Hopefully, one that has an understanding of residuals. I copied your ‘talk’ hope that was okay, and will take it with me to the appointment. I live in a small community, a long way from expert care. Especiallly when it comes to something so rare. So I’ll be travelling 2 hours with the hope that the new Dr. understands.
Your comments on residuals were very helpful to me in that I was beginning to think I shouldn’t be feeling what I was, because the local Dr. didn’t seem to recognize them.
Keep on keepin’ on…
AnonymousMay 16, 2008 at 8:45 pm
Jeff – We humans are strange critters, that’s for sure. Celebrating an anniversary of getting seriously ill – well I for one understand. It is not the getting sick part – its the surviving getting sick part that makes us feel so smug. Even if we still have some “glitches in our get-alongs”.
I read Norb’s accounting of the Colorado get together and the speech you gave. It was one of the most wonderful things I have ever read. Sombody is speaking up – and surly sombody is listening! Just surviving is not enough any more – we need to get better. I for one am waiting for that miraicle little wonder pill that will make me like I was before. Happy Anniversary, Jeff. I toast you. Be Happy. Be Well.
May 17, 2008 at 2:22 pm
Your deal with it take charge attitude is amazing. Your courage amazes me. Keep up the good fight!
Dawn Kevies mom
AnonymousMay 18, 2008 at 7:56 am
I am new to the site and the world of GBS. My mother was diagnosed this past winter. Other people in this thread have referred to a talk or speech that you gave as being very helpful. One of the other respondents mentioned being in a small town and 2 hours from a major centre. My mother is in the same boat. It sounds like your speech might be helpful to my mother as well. Where can I access it.
I wish you all the best in your journey. I appreciate your frankness, but I got to tell you that it scares the crap out of me.:eek:
AnonymousMay 18, 2008 at 9:57 am
Hi All: Thanks Jaydee for your comments-I’m glad my comments helped. It is often discouraging that doctors don’t get residuals. I went through several before finding one who did and, in the audience of the talk I gave, there were several whose doctors told them they were crazy. Needless to say I urged them to find better doctors!
Alma: If you find that pill send me some! I guess I am not celebrating getting the disease but coping with it, acknowledging how my life changed and the new life it brought.
Dawn: your words touched me very much. I don’t look at myself as courageous but it is true that all of us dealing with GBS/CIDP require a good deal of courage. I admire your efforts for Kevin and it reminds me of how lucky we are if we have care givers who really care. My wife is such a caregiver and I know you are as well.
Alison: The talk is posted on the Main forum on this site. I am sorry I scared you but when I was sick noone ever mentioned residuals and I thought I was going to get better and better until it was all gone-what a shock when that didn’t happen! I wouldn’t scare your mom but I think she should know what might happen in her future. Not everyone gets residuals, but the vast majority do. Good luck.
AnonymousMay 18, 2008 at 4:30 pm
I read the summary of your speech and printed it. I read how much pain others have gone through and feel blessed that I do not have any unbearable pain since leaving the hospital (exceptfor a painful bedsore) and am on low dosage of lyrica.
My worst problems were everything you spoke about depression and believing I would never walk again because thats what a couple of Drs. had said to others in my hearing. Five months after leaving hospital and I am able to walk in my home unaided and use a walker when I go places. My PT is teaching me to use a cane and giving me exercises to strengten my legs. I could go on and on, so will stop this.
Hope you improve greatly and get to be pain free over time.
Thank you for your speech
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