herself
Your Replies
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July 27, 2007 at 8:26 am
Julie,
I found what I refer to as my crip shirt which reads: “Some people are like a slinky, not really good for anything but you still can’t help but smile when you see one tumble down the stairs.” A few people were not impressed {mainly my mom at first} but like I told her I’m the one doing the tumbling and some of my non-injury falls have been classic. You’ve got to be able to laugh or the CIDP would likely drive us all into major depression.
The other good one is when I finially got around to entering the computer age the cableman who set up my e-mail used my first name and the first four letters of my last. My e-mail address starts as pattiefell. We all got a good laugh over that one. Keep your sense of humor, it’s what keeps us sane.
PattieJuly 25, 2007 at 7:47 amJulie,
I’ve been taking Provigal 200 mg for over two years now and it’s a Godsend. I think I’d spend most of my time on the sofa or in bed without it. I still take naps but it helps me have some kind of life.
PattieJuly 24, 2007 at 5:59 amStacey,
My prayers are with you and you mom. Two years ago my family was going through the same thing with my Aunt. The spot was cancer and even with chemo and radiation they were giving her 6 months. As I said this was two years ago, she’s still here and the cancer is gone. Prayer does work, miracles do happen! Hopefully things will be even better for your family.
Take care of yourself and keep the faith,
PattieJuly 21, 2007 at 7:37 amI’ll learn to play the game if I can drive the little cart!
July 17, 2007 at 7:42 amAlways nice to hear from someone with good news. You sound like a strong person with a good support system. Welcome to the site!
July 17, 2007 at 7:36 amWelcome Jason. I’ve just hit my 5 year mark for the CIDP, for the last two I’ve been on Cellcept **1000mg twice a day} and currently doing the IVIg every 5 weeks. While I seem to be tolerating both pretty well, Maimi Girl is right each case is different. It took alot of trail and error to get where I am today, while I’m not running races I’m doing okay.Sometimes I felt like a lab rat,lol, but in the long run it’s what it takes to find a combo of treatments that work.
The people here are great, for questions, moral support or just when you want to let loose with a good “I’ve had enough!”. Again welcome!July 13, 2007 at 6:54 amPeggy,
Had to do a double take when I saw you were from Spokane. I’m here and thought the closest members were either in Portland or Seattle. I’m seeing Dr Scott Carlson at the Rockwood Clinic on 5th, he’s the one who dxed me{and quickly} plus after being on the site for awhile it seems I’m getting as good of treatment as anybody. He was a little dry at first but I can say I really feel comfortable with him with him now. Feel free to private message me or if you’d like to talk I’m here. I’m a bit excited to know there’s someone here in town who can relate! I just had my IVIg yesterday so am still pretty tired but I always check my messages first thing in the morning.
PattieJuly 11, 2007 at 8:39 amI use to love the heat but now it drains me and makes me ill. Spokane has been having record breaking heat, most people say the humidity isn’t bad here but coming from the desert, I beg to differ. I’m dreading tomorrow when it’s going to be the start of over 100 degree heat for a few days and I have to go to the hospital for the IVIg. Me and the cat will be spending the next few days in bed with the A/C cranked!
July 10, 2007 at 7:30 amSo glad to hear you’re feeling good! I could stand a few of your magic vitamins.
July 10, 2007 at 7:25 amNo mice at my stand with Himself the cat on watch!
July 9, 2007 at 7:00 amI’ve traded in my snow plow for a D-9 Dozer and a Grader, working on keeping the roads nice so you can go on holiday. In my spare time I’m watching the garden grow. I think I went a little heavy handed with the mircle-gro for the tomato plants are about as tall as me. Once again I’ll be trying to pawn off produce to anyone I can:D . Did you know there are purple bell peppers?
July 6, 2007 at 8:20 amMy problem with foot drop and stairs is the foot doesn’t stay up and catches on the stair when going up. Distance is because I get tired, tired feet and legs make my foot drop worse.
July 4, 2007 at 7:10 amBoy did the pictures make me home sick! Had to postpone my trip in May but hopefully will be in Nevada come September. Thanks for a taste of home.
PattieJuly 3, 2007 at 7:52 amI use to be a bundle of energy, helped everyone at the drop of the hat, did lots of entertaining, plus worked 12 hours shifts on a crushing system, a very physical job. In the last year my energy level dropped about 75%, alot of my friends and family are still looking for the old me. Yesterday I jumped all over my little brother who still has the family hyperness when he tried to rush me along when I was having a bad day. I said I was sorry after, explained how bad the pain and fatigue was that day but I think it took me blowing up at him to get it through that thick Irish scull. People look at us, see nothing physically wrong and can’t understand the toll the disease takes on us. Sometimes if we explain enough it gets through, other times it takes a little more. It doesn’t help that I would push myself to try and be the old me but I’ve finally decided that I need to say no and it doesn’t hurt to ask for help. Let someone else fix the tea and if they don’t offer, ask. Do only what you feel up to, those who truely love you will understand, it may take a little time and you may have to blow up once in a while. If they don’t understand after a time you have to question just what their feelings are for you. Real friends and family will be there in the end.
June 30, 2007 at 8:01 amMy eye twitches if I’m nervous or overly tired, it happens more than I like, lol. The doctor said it wasn’t anything to worry about, it’s just irrating.
