First Palm Springs Support Group had a Rocky Start

For nearly seven months I've been through a process of starting two support groups in the southern California area. This process is no easy task. I had to work hand in hand with the national headquarters for the Neuropathy Association in New York. We finally picked the dates and locations and times. I also was moving from one area of socal to another. It was not a large distance about 60 some odd miles.

About two weeks or so before the scheduled dates one of the participants volunteered to handle one of the groups allowing me more time to concentrate on the group out in my new area of Palm Springs and it allowed me some much needed time and energy to do the things that people do after a move.

Everything seemed like it was coming together and the date was soon approaching. Then it happened. My CIDP neuropathy flared up and showed its ugly face with full force. It hit me during the night while trying desperately to get to sleep. By the time the sun was starting to rise I was in the worst state I'd been in some time. I kept telling my caregiver I had to go to my first support group meeting and she said your nuts. she was right. I continued to get worse as the minutes and hours past. I told her she needed to call them but I could not even think clearly through the pain to tell her the names. She tried and tried to find something about the group on my desk or my computer. My office area was still a complete mess from moving and most stuff had not even been unpacked. She gave me a strong dose of medicine after talking with my neuro. She said at one point before I finally passed out from the meds that she was going to take me to the emergency room. Last year before my IVIg and Fentanyl going to the hospital was an every week thing. I eventually was out of it and the following days were as dark as the first one. They call it simply a "relapse". It is very common in patients with CIDP. It's like a roller coaster ride of ups and downs.

I finally got some emails out to some of the group but have not heard back from any of them. I can hardly blame them from having to show up at the meeting spot and me not there. I could understand to some point but I would hope they would forgive me after finding out what had happened. So, maybe one of them will read this blog and pull together and get another date set that we could meet.

This disease has a life of it's own. I wish I could have my "other" life back. Oh well, Thanks to all, and to all a good night (or morning).

David