July 3rd will be 2 years since I’ve lost my best friend to cancer, There isn’t a day that goes by that I don’t think of him and in the morning I still want to pick up the phone for our usual 5 am chat. It’s hard.
You can think that one positive thing about having the CIDP is that you’ll be there for all the firsts that come along for the kids. It’s hard being a at home parent and harder while your ill but they’ll remember later that you were there at home for them. With all the negitives that go long with this crazy disease you’ve got to look for anything positive. Dear Abby had a letter years ago about leaving the house hold chores undone and spending time with your kids. a little clutter isn’t the end of the world. Take care of yourself but remember to enjoy the kids too!

Shelia. It never hurts to go see another doc. I’m a firm believer that’s it’s my body,I want to know the whys and what fors. You need to be able to talk to them. Maybe just go to the other doc and see how you feel about the treatment you get. Pattie

Cathy, I have problems with both stairs and distance when it comes to the foot drop. My toes will catch going up. With distance I believe it comes with being tired if on my feet too long.
Pattie

My Neuro said that the ‘roids don’t work on some variants of CIDP. After months of doing solumedrol I was pulled off and put back on the IVIg. Happiest day I had had in a long time! Steriods make me sooo moody, I was either cranky, crying or just down right mean. Those around me were pretty happy to see the ‘roids go too. I’ve got the slow, progressive type for while the IVIg will make the symptoms better they’ve never went completely away. I’m learning to take it one day at a time and put my faith into them someday finding a cure. I still have my “poor Pattie” days but I usually just go back to bed and sleep it off, lol.

They were a little spendy around 650 each but Medicare paid all but about 200 for both of them. That included the office visit also. I liked them after wearing those plastic ones they mold to your leg. I had gotten pretty sick and lost about 50lbs, the plastic AFOs have to be re-fitted with each weight lose or gain, the ToeOFF will fit as I lose and gain from the meds. Also there is more of a shoe selection as the part that goes in the shoe is really thin and not so bulky, Guess I get to excited over AFOs but after spending a couple of summers in the old ones I’m a happy camper,lol.

Linda,
Welcome to the site! Had to smile over you flip-flops, I have a small fortune in cowboy boots that I can’t wear anymore but can’t seem to part with. It was hard letting go of all the activities I use to do but have tried to come up with new ones. You’ll find alot of support and friendship here. Feel free to ask lots of questions. I think we need to rely on each other as well as the doctors as there is still so much they don’t know about the CIDP and there’s a wealth of info right here.
Pattie

Welcome Jenn! I’m with you on how great this site is. Whenever I’m cranky or feeling sorry for myself all I have to do is get on this site and it’s like an instant pick me up. It’s nice to have some where to go where there’s a sense of friendship and understanding. Kinda like having your very own cheerleaders. Life with CIDP is hard but the people here make it easier to deal with.

In reference to the steriods being used for the IVIg, I take them the morning of the treatment{4mg} to help prevent the menengitis like symptoms I get from the infusion. Some of us, not all, get a nasty headache, nausea, etc. and this helps me from getting those. I do the infusions every 5 weeks along with Cellcept and it seems to be a pretty good job. It’s like a treat to go in for the treatment, the nurses are great, I get to sleep all day while they bring me warm blankets and feed me,lol.