My Name Is Not Cidp/gbs
AnonymousOctober 12, 2006 at 10:37 am
😉 HELLO ALL HOW IS EVERYONE? I HAVE TO VENT A LITTLE FRUSTRATION TO EVERYONE RIGHT NOW.
THERE ARE MANY THINGS IN LIFE THAT CHANGE BUT I DID NOT KNOW THAT I WOULD HAVE TO CHANGE MY NAME. GOSH IT SEEMS LIKE ALL ANYONE SEES IS A DISEASE NOT ME. ALL THEY TALK ABOUT AND ASK ABOUT IS MY CIDP, IF I TRY TO TALK ABOUT OTHER SUBJECTS IT SEEMS LIKE THEY DON’T UNDERSTAND OR CANT HEAR ME TALKING BECAUSE THEY START TALKING ABOUT MY CIDP AGAIN.
I WOULD LIKE TO FORGET ABOUT IT FOR A WHILE AND REMEMBER WHAT I WAS LIKE PRE CIDP. I WAS A STORE MANAGER FOR SHOPKO COMPANIES. I AM THE MOTHER OF TWO GORGEOUS TEENAGE DAUGHTERS. hOMECOMING NEXT WEEKEND (WATCH OUT DAD THEY HAVE HOT DATES TOO).
THANK YOU FOR LETTING ME VENT I KNOW THAT OUR LOVED ONES ARE CONCERNED. BUT EVERYONE HAS TO REMEMBER THAT OUR BODIES CHANGED WE AS A PERSON DID NOT. AND PLEASE STOP ASKING ME HOW I AM FEELING EVERYDAY. I TOLD MY HUSBAND ONE DAY WHEN HE ASKED ” I FEEL SOFT AND SILKY WANT TO FEEL?” HE WAS SHOCKED AND THE HE GOT ANGRY CAUSE THAT WAS NOT WHAT HE WANTED TO KNOW.GRRRRRR I LOVE HIM BUT HONESTLY GIVE ME A BREAK FROM THIS.
I GUESS I SHPULD HAVE POSTED THIS IN THE THINGS THAT ANNOY ME SORRY!!!!
AnonymousOctober 12, 2006 at 2:57 pm
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.
AnonymousOctober 12, 2006 at 3:58 pm
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.
AnonymousOctober 12, 2006 at 4:13 pm
lori and all,
thank you so much if it there was no forum i think i would go NUTTY. I say a prayer everyday for everyone here and everyone out there suffering without the help of the forum.
I would love to be able to give you a day off! an emotional, and physical day off. maybe we all need a day at the spa with some nice refreshments being pampered. I would love to go sit down with anyone right now and just laugh and have fun talking about nothing at all.
I am going to host a passion party with my sister in law and a few friends. Those are fun because you can laugh and be embarassed at the same time 😮 . so if there is anything that I can do let me know.
everyone please give you familys a big hug ((((((hug everyone)))))))) from me.
Thank you again
AnonymousOctober 12, 2006 at 10:39 pm
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!
AnonymousOctober 13, 2006 at 10:41 pm
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 🙂
AnonymousOctober 14, 2006 at 11:13 am
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.
AnonymousOctober 15, 2006 at 12:28 pm
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:
AnonymousOctober 16, 2006 at 8:31 pm
my husband now has tingling in his left arm only!!!! and he thinks he might have it too. but when i offered to share my emg appointment with him his arm felt much better and his headache went away lol I still love him I am sure it is alot of sympathy pains. plus his arm has tendonitis in it.
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