didnt mean to hurt your feelings or upset you–was just concerned about the part of being unable to eat, not able to go to bathroom and wasting away—just sounded very serious to me—I am no Dr by any means—but just those things alone seemed like you should be getting hospital care. Lori
Ken – you have put forth a great fight with this horrible disease, and I am proud of you. Your partner is so loving and caring – bless him! I am praying that the SCT will make the difference. You have been such a shining star on this site and I have so appreciated the wisdom you have shared! 🙂 Keep sharing as much as you can. Perhaps you could “dictate” to your partner so that we can stay informed.
I do care that you are suffering so and will keep you in all of my prayers. With hugs, Judi
I am so sorry to hear your story but you have definitely come to the right place. Please read read and read on this website and you will not believe the stories. I have a three year old with cidp. You might be wasting your time with a lawsuit as cidp is extremely hard to diagnose. I had to go all around that globe and back to get our diagnosis. I believe that you are on the road to recovery. The people on this website are the experts and have helped us so much. They are awesome and can help you. It breaks my heart to hear you cried as it brings back a lot of memories. We have cried and cried too. It is not a death sentence but it isn’t great either. You can do this and the people on this site can support you every step of the way. Please keep us posted. Time heals and not everyone has this for life, some people go into remission.
It was with a great amount of shock and tears that I read your post. I am so very sorry that now you have to face this new crisis, your family as well. Although we have never met, I remember you as one of the “old-timers” on the original sight when I joined back in 2002. You were/are always so ready and willing to help out almost everyone who posted; even long after your recovery from GBS. How we teased you about your lack of capital letters & your short, to the point posts. But I am so sorry that I never got to meet the man Gene in person.
As another old-timer I must say that one thing you kept posting was that you saw the most improvement after 26 months. How much that inspired me & kept me going through the first two years of battling a severe case of CIDP, when I saw no improvement. Ironically it was at the 26 month mark that I also began to see the most improvements. But thank you for keeping me going for that long, when I thought the world had ended for me. You have always been such an inspiration to all of us over the years, for that I thank you from the bottom of my heart.
I am not very good at expressing myself sometimes. I can’t begin to tell you how much you have meant to all of us & how much your posts will be missed. May God bless you & make the coming weeks as comfortable as possible. You are a great man & I am proud to have known you, even if it was not in person.
[FONT=”Comic Sans MS”][SIZE=”2″][B]Adina,
Please accept my deepest sympathy for your loss.
It has been almost thirty years since my Mom left her earthly being yet sometimes it feels like only yesterday.
We all grieve in our own way, but please know that those mornings when you wake and at first feel alright, then it hits you like a huge boulder on your chest that she’s gone [I]will[/I] pass.
She will never truly be gone as long as you hold her in your heart.
May Peace and the Force be with you
I had a very severe case of CIDP, so I know a little of where your husband is coming from. I needed total care, was inpatient in 3 hospitals for 3 months,& my husband took 3 months off of work under FMLA for 3 months to take care of me. Then it was my mother who moved in with us for 9 months until my youngest son graduated from college & took care of me during the day (he worked after noons.) How I hated losing control of my life; your husband’s attitude is much better than mine was.
I don’t know what to tell you. Ironically, I have always envied people who had GBS & not a severe case of CIDP like I did, as they seemed to make better recoveries then I did. I don’t know if your husband will improve much more, I never knew that there were people with GBS who did not recover at least fairly well. But as most tell you above, you have to learn to live with your new norm. It might be horrible, but you have to deal with it, as you really have no choice. Another thing, this whole experience made me more religious, whereas my husband turned away from God as you did. It must be harder watching someone go through this than I realized. I am just so sorry for your situation, I don’t really know what to say. We are always here for you, if that helps at all.
I just wanted to say that I’m sorry to hear that you are going through this!! And say that just because you have MS now that does not mean that you lose your new found friends. My thoughts and prays are with you and please let us know how you are doing!
Steve, it’s me Katy (Maradyth) that you saw in the hospital. I am so sorry to hear this news! I think you do have a lot to do, like visiting and bringing hope to those with GBS. I got your message the other night, but I lost your card with your number (I am bad about that). Please let me know what hospital you’ll be in and when. I understand if you may not want visitors but if you do I would like to see you, if not, I’ll send something.
I will keep you and you’re family in my prayers!
I am so sorry to hear of your loss; I know sometimes it all seems like just too much to bear. We just got back from 10 days at our cabin (virtually in the middle of nowhere) & my mom called me to say that her brother had died. But he was 94 & died of prostrate cancer, so it has long been expected. It is the kind of senseless deaths that are so much harder to bear. I will say a prayer for your aunt.
I am so sorry to hear of another loss for you & your family. And yes, a parent should never ever have to bury a child. I have one aunt who buried 3 of her 5 children (one at 25, two at age 42), a husband at 62 & then had a stoke & has been in a nursing home the past 5 years. One wonders just how much God can expect one person to bear in this life. But please try to enjoy your son’t wedding, until my grandson’s birth a few weeks ago, it was the first joyous thing to happen in my immediate family since her marriage 9 years ago. These pleasant things don’t come around that often. My prayers are with you…
jeff, i’m so sorry you have to deal with yet another crappy disorder. seems like you and i are both having the month from hell! i’ll private message you next week when i know more about my liver and i want to check in to see how you’re doing with the gout. as always, my prayers are with you.
I am so sorry to hear we lost another forum member, especially one so intelligent, witty, & loved by so many. I know how close you two were; I will miss her clever & funny posts. God bless her family & I hope she is free from pain now & it consoles me to know she is in a better place…
I just reread all of our old emails before I began to post. It is just so hard when one is so young. He fought the fight so valiantly, you should be proud of him. How much your love & concern came through in your emails. But I think he exhausted every treatment & his body had just sustained too much nerve damage in the end. I just know he is in a better place now, & you can rest assured that all of the pain is finally gone. I hope that is a little consolation for you. I can’t begin to tell you how sorry I am, be strong for your family if you can.
All my blessings, Pam