My Name Is Not Cidp/gbs

Hang in there, ‘Mom’. I wish you the very best, and I won’t ask how you are doing. How about, what is your favorite new TV show? In the meantime, know that your family is in thoughts and prayers.

One of every 100,000 named GBS,
aka … doug

Hey,

I know what you mean about forgetting the disease. We are having an IVIG treatment right now in the hospital. Dell is 2 and he’s sleeping in the crib in the room.

There are many, many days I wish I could forget about this disease. Yesterday, I was driving to his dr. appt. (orthopedic) and he was crying and I called my friend and said “I think I’m having a panic attack.”

I have really noticed that I’ve gotten alot more emotional in the past few months. It’s really hard being a mom to a child that can’t walk. You want them to be like every other 2 year old.

I’ll say a prayer for you if you say a prayer for Dell.

Love, Lori

I am sorry for your pain:( I only wish that people would ask . . .

I’m with you Mom,(nebraskafan), i’m the same way. i just came from a cousins funeral(40 yrs old) and everybody i talked with kept changing the subject to me and my health problems. i wasn’t there to talk about my health i was there for my cousin and her families. i am at the point of just answering everybody who asks how i’m feeling-“Just Peachy” no matter how i really feel. my parents are finally at the point of only asking me after i haven’t talked to them in a few days, just to check up on me. ya gotta love em though!:)
Lori. Dell is always in my thoughts and prayers, so are you. you’re really a great mom! keep up the good job! Big Hugs to Dell, from me! take care.

When you don’t feel like discussing it…………………and they ask ” how do you feel?”

Just answer : ” with my hands, how do YOU feel ? ”

Most people finally understood that if I replied with that, I really didn’t want to talk about GBS.

I am going through my own “how do you feel” – this forum gives you a chance to vent. Our friends and family have no idea what the reality of these syndromes are, you can see it in their eyes when you attempt to tell them while you look so “fine”. Keep the faith and know you can always let loose here!

nebraskafan- remember you have an illness, the illness doesn’t have you. Although it is annoying people ask, at least you are on their radar! I wish people woulod ask me sometimes- my husband has the CIDP, but it affects our whole family like an earthquake- our children and I would like to line up for the hugs sometimes!

jUDY Z- I hope you are doing well 🙂

What drives me round the bend is for someone to ask how I’m doing, then proceed either immediately to interrupt and tell me everything that’s wrong with them, or to reply to everything I say with, ‘Oh, I have that too’, ‘Oh, I know what that’s like’, etc.

Keep fighting.

Deb

I know the feeling about listening to others tell about their ills. I am patient – they just don’t realize. My own mother now thinks she had GBS a couple of years ago for a couple of days! (but she thinks she’s had every new illness that comes along) I just sit quietly til they go on to something else.:rolleyes: