Hello Miami Girl,
Just hold onto us, your family here, you’re not alone. I lost my sister eleven years ago, she died suddenly from an embolism one week after my birthday. I understand what your loss is doing to you. I will email you very soon to talk, maybe a phone call will help you so that you know someone cares.
These are syndromes that cause REAL grief, because after all, we lost the way we were. And they are syndromes that we get better from very slowly, you must look at years, not months. I remember my falls, they lasted for two years, then they ended, any fall now is a “normal” fall that can happen to anyone. I am now in my ninth year of CIDP.
I think this forum needs about three more threads added so that we can help each other better. We need a state by state list so that we can link with each in person. We have several members from Texas (I think that’s where you’re from) and one might live near you. We need a thread so that you know where to turn and what to do when you don’t have insurance. And we need a state by state list of neurologists who understand GBS/CIDP.
Valerie, if it would help you, just click on any members name and ask them to call you. We’re here.
This is what your family is here for and many of us can feel what you’re saying. We hear you! We need a VENTING thread to be added just for things like this, so we can all go to the same place just to talk to each other when we’re sad, depressed, angry, confused, etc.
You’re in my thoughts and my prayers. I wish we could all send you a special hamburger as comfort food.
From my heart,