Its been a long time

    • Anonymous
      January 27, 2009 at 11:25 am

      Hello out there in csyber space, its been a bit since I was on here,its been a road that many of you have travelled and I am now among you, not a bad group of people, their mighty tough, well I was wondering if anyone as any thoughts on the way that this illness takes away more than your bodys ability to do what it use too. I was wondering if anyone else has gotten angry at CIDP, I was doing so well wit this and over the christmas holidays I lost it, when I was in hospital last year my aunt died and was enable to go to the funeral and this June I lost my Mom and did get to spend as much time with her as I would have liked, then at Christmas I got phemonia so it was like a flood gate opened up and I lost it I hated this illness and what I have lost with it,people dont understand it, they look at you funny, but its apart of what you have to deal with, I know that there was going to be some sort of healing for this and there are the steps that you have to go through one of which is anger…we must be tough… but then again they are not alone, any way I hope that you guys are all doing better and that there are good people in your lives to help you and hold on to your hands God Bless and on to another chapter Brenda:)

    • Anonymous
      January 27, 2009 at 12:05 pm

      [SIZE=”4″]Angry? I use to ask God to kill me or cure me. I use to lead a very active life. I bowled, played softball, played golf. I’m a locomotive engineer for a major commuter Railraod. 5 years later,I still don’t know what the future will bring. In addition,I’m in the middle of a major flair up. This last month,I’ve been in denial about I was going backwards. I must say after just 2 days of higher steroids, I have beaten the numbness from just below my knees back down to my ankles.
      To be able to get back to work,I have to get to about 85% of what I was, without AFO’s. This disease is not only a physical nightmare,it mentally exhausting. You can only imagine what I was going thru my mind when the top docs at NY’s Columbia Pres. Hospital are telling me I’m the worst case of CIdP they ever saw. I’ve gone from totally paralized to walking unassisted with AFO’s.
      I hate my life with this & ask “why me? ” I know I shouldn’t,but I guess its only natural.I know I’m MUCH better now than I was on 8/17/04. Let’s face it,this sucks!!!!!
      I woundn’t wish this on anyone. But I guess we’re all in this together & we’ve got to make the best of this terrible situation.We have to come out of this with our heads high & our bodies fuctioning as intended. Failure is not an option.[/SIZE]

    • Anonymous
      January 27, 2009 at 12:12 pm

      I just want to say I do get angry at the CIDP…even though I am just new to this whole diease (April2008)….I hate being tired all the time…dont know whats going on…joint stiffness…mucsle pain…I keep asking myself why me…I dont deserve this…

    • GAVol
      January 27, 2009 at 1:33 pm

      Hi Brenda,
      We all go through the anger and why me phase. Mine was when I had GBS in ’85. Former college football player, semi pro football and baseball, 10K runner, golf, etc. Then 3 days after a round of golf, totally paralized. Angry, you bet. It took me a long time to adjust to my “new life”, but I did it by being thankful for the things I could do rather than those that I could not.

      Was doing great until ’96 when CIDP came to vist and decided to stick around. My first reaction was again why me, but time on this site helped me realize you can get through it. I have a very supportive wife and kids as well as friends who have learned about this disease and its quirks and understand there are days when I can’t do things. There is always someone there to help when I need it. I just had to learn how to ask.

      I am now twice as thankful for the many things I can still do and focus on the positives. I have been fortunate to have a doctor who knows this disease well and over the years we have tried many, many treatments and combinations, including some off lable MS medications to try to stay ahead of the progression. Considering they told me about 6 years ago that I would probably be confined to a chair within a few months and I am still walking, I have much to be thankful for and have lost my anger and why me attitude.

      Every day I wake up and get out of bed, I realize what a great day it is.
      With the new Gamunex, PE and IV solumedrol treatment combination I am now on, I have regained some strength and endurance and again able to work on my antique car restoration hobby a few hours a day several days a week. Can’t stand long or bend over very well, but stools and pads on the floor let me work in a kneeling or sitting position. The lack of grip strength can be offset with more leverage, etc. I find ways to adapt and keep on going. Lots of ups and downs over the years.

      I’ve always been a “half full” person with the classic type A personality with a volital temper, but that has been replaced with I do what I can, when I can and don’t worry about the other stuff. Never, never give up, because one day they may hit on the treatment or combination of treatments that will help you. I feel that if I hang around long enough, they will find a cure for this thing. Don’t forget, there are meds that can do wonders for mood swings. Hang in there and stay positive.
      Fred