One year anniversary this week….gbs….
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October 20, 2008 at 6:31 am
It was approximately one year ago this week I started having issues… My the year went by fast?… In a lot of ways, I feel like it was a “wasted” year, since a majority of it has been spent trying to get well… I find at the very least I’m thinking about this stuff, a lot of the time during the day…
I think I could use a lot of cliche’s regarding the best and worst of times… I remember being told this stuff was fatal, (as I was being wheeled from emergency up to icu).. That scared me more than any words here could say… I literally was scared stiff, trying to remember things in my life I did that meant anything…, both good and bad….. This year has been tough on me, but equally so on my family… They had to sacrifice a lot, and had to deal with one cranky gbs’er at times.. My wife has done so much, and I hope any one who has this, has someone to count on… Here’s looking at you…..All my love…
The pain is gone now…My toes get numb, and suffer bad fatigue.. I try to stay positive, but at times get down…. I’ve been rediagnosed (still not sure its cidp, from an acquaintence that had similiar gbs…)… I’m still weak, maybe 75%…. I can function though, and have returned to a somewhat active lifestyle….
My hope is that many of you, can attain similiar goals..Was immobile (paralyzed) about 4-5 days…wheelchair roughly 2 weeks, walker about 3-4 weeks… It took me 3-4 months to walk “properly” ….6-8 months to do some light work….I’m still trying to get it back…To top things off, had hernia surgery couple of months ago (no side effects that I know of).
Going to the clinic in an hour for ivig…. I’m going twice 2 times every two weeks, and taking pulse steroids 500 mg methylprednisilone oral… Today, I’m getting reduced to 3 g from 4 g ivig.. I took the pills yesterday morn.. couldn’t sleep last nite.. which is typical for me on these pills.. 1-2 days insomnia.. Hope to get reduced to 250 mg in dec… Here’s hoping I can get off the ivig without probs…
Take care everyone, it has been great chatting with everyone, Ron, Kiwi, Debs, Dawn, Kristen, thanks…and this site has been real helpful… For you new dx gbs’ers.. Don’t rush the process, listen to your body, rest, it’s true.. Thank you for letting me share my experience, and hope it helps someone…
Well, gotta go get ready to drive to the hospital……They sure are nice there… I’ve met a few cidper’s, a few old friends with cancer):( , and many people I’ve never met, just hanging on for dear life…..
All my best guys and gals… dean
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October 20, 2008 at 8:49 am
All the best to you Dean as you keep improving. Thank you for sharing your experiences of this past year with us. It was my one year anniversary yesterday.
Considering a few Doctors did not expect me to walk again, I can walk short distances with a cane. I still have balance issues but can see where that is improving slowly. I am looking forward to continued improvement.
Take care and thank you.
Shirley -
October 20, 2008 at 9:10 am
Dean, I just want to throw in that it will come…..be patient. I had GBS 25 years ago and it took a couple years to be back on track. I did do well for 20 years. Worked full time and had very few residuals. I raised a family of 4 kids and took part in all kins of activities. It is only in the lasr 4 or so years that I have begun experiencing residuals and I am not sure if that is normal as we age or if there is something else going on. But I still work full time, ranch with my hubby as a hobby:D 😀 (it ain’t no hobby!) and keep busy. The residuals are annoying and painful some days when I over do it, but certainly not enough to stop me from enjoying life!
Thanks for sharing your success. I am glad you are progressing and please keep coming here. It is our stories that help the newbies to the site get the support and comfort they need to move forward.
Best Always.
Janet -
October 20, 2008 at 1:43 pm
Gosh Dean, I remember when you first signed on and were seeking so many answers. You have done awesome over the past year, and yes it did go quickly! We learn to not take things for granted, and enjoy each day for what it is, and to be thankful for our friends and family! Good luck in your second year of progress!!
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October 20, 2008 at 1:55 pm
Hello Dean, Time has gone by fast, reading your post has reminded me of the doctors telling me to get my power of attorney together. That was scarey,along with the fact I still have a 12 year old at home.Anyway ,glad you are steady progress, maybe not as fast ,as you would like, but still better than six months ago.You and I got our lives changed around the same time.I hope this next year you gain that 25% ,or at least close to it.
Take care
Ron
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