Hey Linda
Sorry to hear you have to take so many pills. My aunt has Lupus and is on a lot of pills. How much Gabapentin do you take? How far apart do you take it? I am starting back on it and I am trying to not take as much, I was up to 3200 mg/day with pain still coming. I should ask others how they take theirs. This autoimmune stuff is the pitts, but then I see others that are dying with cancer, losing their eyesight, losing their children at young ages, and I start to look at myself and start to appreciate what I have. Through all the pain I had I learned to appreciate the fact that I had hands and feet to feel pain, insurance to see a doctor and get meds, my husband is still working (even though he has been off work for 8 months due to a motorcycle accident that was not his fault and he almost died), I still have my husband and my daughter still has her daddy, we still have a house to live in, etc, etc. I thank God everyday for what I have and to focus on that. Although, some days it is hard to do that, I am thankful for this board and the people on it to share the good and bad days.
Hugs and prayers;) .
Clare in Michigan
Hey Linda
I know what it is like to have crappy mornings. I get them and have pity parties too. I think you should tell the brother-in-law to go get mom’s pills and go take a loooong soak in the tub, you deserve it after all the work you did with canning. My gosh, I can’t believe you are doing so much. We all have our bad days and deserve to have pity parties once in awhile. I have CIDP and sometimes just sit down and cry when I get feeling bad. Afterwards I feel better. I will pray for you and hope your leg feels better. Hugs to you also:) .
Clare in Michigan.
Hey Linda
I, TOO, know EXACTLY, how you feel! I was diagnosed w CIDP 6 months ago, been on heavy Prednisone, since (worked well, at first) Now, did my IvIg 5 day infusion thing? 3 weeks later, worse than ever! (BUT, if you are going there, it works for most)
For my follow-up Doc advised me to apply for SSDI and “next tiime, bring your cane”, I WAS BUMMED! So, the guy who can’t sit and NOT work, CAN’T work. The Guy who can’t sleep (on acct of the steroids) is soo tired, lol. Seems ironic. And, some days, I feel great, start to do stuff (around the yard, on a car, to the house) then start w the staggers or hit myself w a hammer or statr losing eye focus- very frusterating.
BUT, I WILL TELL YOU- while getting my initial IvIg infusions, I had the opportunity to talk w several CIDP-GBS patients. Out of the 9 I met, 2 had other serious health issues (and not working) a couple were like you and I (still figuring out where the “ball lies”) but 4 of them had decent jobs, one was not only an Ins Exec but an EMT! So, I guess, pray one of the treatment options out there works for you? It is working for others (just not me, just yet)
Peace Be With You,
Eric