Hi all, I am a 59 year old woman. I worked hard, drove myself around. Took care of myself. I'm married BUT he can't won't does not want to care what is going on with me.
I was told July 2014, I have CIDP. Since being told I have done allot of looking for info. Now that's a joke so far.
I went into Hosp.July 7th to have port put in for IVIG treatment. I got 2 treatments when my body went nuts. Bladder shut down, then UTI then bowls then kidneys.
Then fluid built up around lungs and I code blue on them. Now I'm in a rehab center.
So far no one can say any of this will work right again or if the CIDP has control of all of them. Oh I'm also type 2 Diabetic. I had 3 Dr.'s push me off as saying "well your diabetic what do you expect" before I got with a nerve Dr and she told me what I have.
Sad but true I was happy to have someone tell me what was wrong but did not know how bad this is.
I need friends to talk to about all this I just cant go thru this alone.
OH yes I went septic also.
I went yesterday to my god sent Neurologist and I have made some progress but not enough for my craves. Never went septic thankful but also changed diet which helps research is key gluten is our enemy
I too found a change in my diet to be helpful.
Diet change is hard but body does thank you.
I. lived in Florida for 6years…often think it had something to do with my CIPD…Radon in particular. I got sick when I came home in 1993/4…a bit of me at the time???starting with a numb index finger and over 4 undiagnosed years it crept to my feet…disposing of my much loved stilettos in the process. If I can help I will…it’s been a long journey for me…but you have a lot going on since being diagnosed…very different to most of us…I think.
Every time I go to e-mail Dancer Mom is there…I do not know why she is there…like everyone needs led onto the site. Have there been changes I am unaware of? I had started to think she had a lot of weird symptoms!!!
Happy, I broadcast discussions and blogs sometimes on this network so that members will know there is a new discussion on the site. I am a volunteer here, and do not have CIDP myself.
Keep strong I no it’s hard… if you would like add me to fb x
Never easy when two nasties collide! You just never know which one to blame for what.
My hint for anyone doing research on their condition - use Google Scholar. Often frustrating but mostly without the conspiracy theory rubbish you find in ordinary Google.
Speaking of diet two books that I really found helpful and included many wonderful foods to eat along with ways to eat them. "Eat to Live" and "The Doctors Diet". I pick and choose from recipes from both, and I never feel hungry, so I don't feel like I am dieting. That in it self makes a big difference in just the mindset to approaching losing weight.
I’m here for you. Call me anytime 330679 2150
Sorry to hear about your situation, that royally sucks. I no its non of my business but I would drop whoever it is your married to because your not going to get far at all in beating this illness if you haven't got anyone on the home front able to care for you. A lot of this illness requires a positivity of mind. Its near enough impossible to watch your body refuse to do as you tell it and to have no one around to help/care.
Keep a positive mind and environment!
So true Tommo this disease has a mind of its own. Mr doctors say avoid stress as stress effect you body on a good day, since we have many questionable day stress is not good. Drink lots of water, avoid dairy, and try to go non-gluten. As far as spouses or family take them to doctors as that brought reality to my husband.
This disease stirs up allot of emotions. Don’t do anything rash . Relationships take work so they will always have ups and downs.
1st you don’t need another battle.
2nd don’t create one
3rd modify your diet
4dont feel bad if you can’t or don’t get something done
5th very few will understand how you feel so don’t be devastated when someone doesn’t preserve your sanity and your energy.
6th love those around you shortcomings an all they may not understand but you don’t have the energy to make them. Remember men want to fix things he is helpless he can’t fix this.
Finally do what makes your heart happy not what someone tells you to. Be at peace your mind and a positive attitude are good healing tools. : ))
Robert so well said. Strength come from within and knowing you limit can be a struggle. I work to improve but don’t set high goals and when I have a good day I feel successful but it too many trys.
I just watched a dvd on GBS/CIDP called "What is CIDP?" Did not tell me anything new but did reasure me I'm not going nuts here. I'm still in a rehab and should be let out in 2 to 3 weeks. Now that scares me as I still cannot feel my bladder and husband is showing no willingness to cath me at home. I am looking into meeting a new Nero. that knows more about CIDP so I hope he can help me with that also. I am reading everything I can get my hands on. But I think I am past just my hands and feet/legs.
I don't understand how spouses fears like yours. When my wife needed daily injections I gave them, whether it was the bigger needles or the short ones, for her MS. If she needs to have a catheter then I will be there to help her.
On the flip side when I needed injections of Lovanox in the abdomen twice a day she gave them to me, and I had to give her a hug afterwards because she knew how much pain that it caused. We've been married for 31 years, and we take care of each other.
So it just baffles me and yes bothers me to know that there are spouses who will not care for there other half.
Bob in OK