Reply To: Isolation

July 4, 2017 at 8:21 pm

Susan–To answer your questions: I started monthly infusions, but then my blood pressure dropped so low that we had to stop. I am seeing a different doc to decide if I need to continue or not. My doc was affiliated with an infusion center and kind of strange. I liked that he understood CIDP and GBS and was a great doctor, but not that he was making money off of getting on people on infusions.

I am located in Philadelphia, PA. How about you?

When I click on the link that to try and find a liaison, it doesn’t work. Also, I used a liaison reference provided to me by someone on the site and the email didn’t work! I also originally got in contact with someone who was a liaison when the link was working, and that person stopped emailing me. People are people and they have lives, I understand, but it doesn’t make it any less frustrating when you are trying to get help! I hope you can find a better one, too.

I am on MANY happy pills, haha. I have some psychiatric conditions as well. So, that’s fun.

I am sorry to hear about you and your husband’s struggles. It is an isolating disease because no one really knows about it. When you mention MS people get it. But you mention GBS or CIDP and people are like…huh? When I came into my college classroom with a walker one day after not using one all semester everyone said, “What happened?” I just responded, “Nothing happened. I just use this sometimes.”

Electra–Like I mentioned to Susan, the liaison I had original contact fell off of the face of the earth. The other one that someone recommended does not exist, apparently! And the link is now broken. 🙁 I made a post on a local site seeing if anyone wanted to get a GBS/CIDP group together, so we will see if anyone responds. I also filled out a volunteer application for this site in my area. Hopefully that will help me meet some people!

For everyone–Isolation is no fun. We need to keep trying to find ways to keep ourselves busy. I will take Susan’s advice and try to find a craft group. Maybe one exists in my area!