Your Replies

  • October 24, 2007 at 10:36 am

    I’ve had both plastic and metal braces; the plastic were harder to find shoes that fit, uncomfortable and couldn’t handle my weight going up and down from the steriods. I’ve now some made by Toeoff, they are lighter weight, easier to find shoes for {though you’ll still have some problems}, and won’t have to be replaced each time my weight changes. They only have a bit of metal mostly like a fiberglass or such, also have thin padding that can be removed to wash or replace when they need. After three years of the molded plastic I was like a little kid when they gave me the new ones. I can spend more time on my feet without out the discomfort, have a better choice of shoes and it’s easier to get them in out of the shoes. When I showed the neuro the new braces he started suggesting them to all his patients.
    It’s depressing having to wear them but hey not so many trips and falls for me made me more than willing to wear then. I ‘ve even found some dress boots with no heel so I can dress up in the winter. With a longer skirt and the boots you really can’t see them. Am I vain or what!/! lol.

    October 23, 2007 at 8:01 am

    I have the progressive form of CIDP, I do IVIg infusions every 5 weeks with 1000 mgs of Cellcept twice a day. It seems to keep the symptoms down to a dull roar, I still have the numbness,tingling, etc., just not as bad as without the above treatment. We were doing the solumedrol treatments but they didn’t seem to work as well. Hope this helps you.

    October 18, 2007 at 8:19 am

    I called my doctor’s office yesterday as I was getting confused. I’ve been getting the flu shot per their instructions every year and haven’t had a problem as yet. The one year I didn’t I got the flu and badly. I’m a little worried about being lucky so far and wonder if I’m pushing my luck. I’m told the virus they give you is dead so it should be okay. The thought of getting as ill as I did that one year I skipped it doesn’t impress me but am concerned about getting the shot. Kinda like playing Russian Roulette.

    October 15, 2007 at 7:43 am

    Maimi Girl,
    We all have our pity party days. I can get them with no reason or logic, all I know is I want my old life back. I’ve always been independant to a fault so relying on others really gets to me also. I live alone and have to rely on the kindness of friends, family and cabs. I try to plan my shopping for the month and get every thing at once but it never fails that I’ve forgotten something or need something that isn’t planned. Then it’s hurry up and wait for someone else to go get it for you or come get you to get it. Really hard when it’s one stupid little thing and you have to wait on it getting to you. One of my major pet peeves, I just want to run to the store that’s a couple miles away but it might as well be two hundred miles. Not being able to drive is a pain!
    Vent all you want, so many of us are in the same boat and we understand. I wish I had answer but lacking those I, like the rest on the site, are here to listen and can give a bunch of moral support. Keep your chin up but cry if you need to. Sometimes a good cry helps me get all the flustrations out.

    October 14, 2007 at 8:02 am

    If you haven’t done so already you should try med help, it can give you the name of each drug company and the info for getting help with all the different drugs. Before the part d insurance kicked in my meds were running about $2500 a month, I had 4 different drug companies sending me my meds for free. I still get help for one. It takes a bit of paper work and once I had to do one twice but once it started it was a God send. It also helps when sending in the application to do a cover letter explaining the disease and the other meds you are taking. Hope this helps.
    I’m going through a bit of a blue period right now. Happens every fall when I realise I’m going to be stuck in doors soon. Plus going home to Nevada always makes me wish for my old life back. Sometimes it feels like I’ve been sick forever and everything is an up hill battle. Usually I’m upbeat but figure that once in a while I have a right to be cranky. It’s a hard road we’re on. Keep your chin up and lean on your friends here.

    October 13, 2007 at 8:44 am

    Like you I’ve given up driving, along with the hand issue I’ve got issues with the meds. Basicly pain meds and driving don’t mix, just a DUI waiting to happen. I miss my independence but have a fear of hurting someone else. Much rather use the medical transpo that the city has to offer than end up with a DUI or in an accident.

    October 12, 2007 at 7:24 am

    When I took my last serious tumble and had a plate put in my arm I had to stop some of the meds before surgery. No anti-imflamatories, no ‘roids. Be sure to discuss your meds with your doc as some take some time to get out of your system. I was doing solu-medrol at the time, they canceled my treatment and switched to the IVIg before the surgery and during the healing process.

    October 10, 2007 at 7:36 pm

    I figure there’s still alot of Kid things I can do, I’m better off sitting on the ground any way, lol. It’s a state of mind, looking at the world as if each day is a first. Enjoying each season. If we take the time we can look closely at all the little things we miss now that we’re grown up, keeping your eyes and mind open. Take the time to be silly, jump in a mud puddle or a pile of leaves. Sometimes I just pretend that I’m not sick, and let loose a little. It’s what keeps me sane.

    October 10, 2007 at 8:14 am

    I’ve been using TOEoff AFOs for a year now, on both legs. They’re extremely light weight and have been a God send as I’m less likely to trip, fall and break something. Your Dr should be able to refer you to someone to be fitted. After using the old plastic fitted AFOs I was really happy to get the new ones, the old ones were so uncomfortable.

    October 10, 2007 at 8:08 am

    When I tried smoking pot in high school all I got was a headahe and I went to sleep. My son suggested it to me on one of my trips to Nevada cause he was stressed over my weight loss from the nausea, and if it would help with the pain what the hey. Just need to find a “dealer” here, lol.
    They now have THC clinics in Spokane, the pain has gotten alot worse and the Fentyl patch doesn’t seem to be working as well. I was thinking of giving it a try instead of increasing the pain meds. Found an ad in the daily paper, can get info at [url]www.thc-foundation.org/clinic[/url]. Going to ask my pcp, she’s pretty open and if it works I’d be a happy camper in more ways than one.:D

    October 10, 2007 at 7:39 am

    After being so sick for so long don’t the little things mean so much? Glad to hear you’re doing better, hope things keep improving.

    October 7, 2007 at 7:26 am

    It is faith and humor that keeps us going! Having someone to lean on and being able to laugh at ourselves, otherwise the disease would have us down and out. Lately the medical tests and bills with no answers was enough to drive a strong person to dispair,{thank God for the two weeks in Nevada}, having my friends to remind me that this too shall pass, that you have to put faith in God and being able to laugh at all the ackward moments is what is carrying me through. None of us have an easy road, no matter what stage of the game we’re at.

    September 28, 2007 at 7:00 am

    I, like you, get the aspetic menengitis from the infusions. I pretreat with Dexamethasone **4mg before each treatment and a couple of days after} along with the Benadryl and Tylenol. We also keep the rate around 80. It takes longer and I still get alittle bit of symptoms sometimes but nothing like it use to be. Hope this little bit of info helps. Good luck, Pattie

    September 6, 2007 at 10:56 pm

    I’ve Levis in every size from a 28” waist to a 34” waist and wore every size thanks to the steriods. I’ve been off of then for almost a year and I’m finally back to normal, with a much better attitude also, lol. I’ll only do them now as a preventive measure to counter act the side effects of the IVIg **4 mg for one to three days}. Have faith, the moon face does go away!!

    September 1, 2007 at 7:38 am

    When the pain goes beyond what I can handle I submerge myself in the hottest water I can stand in my old claw foot tub and soak. By the time the waters cooled I usually can climb into bed and sleep it off.
    I think what you’re doing is great. Support systems are really important.