I was recently informed that I have been approved to receive SSDI
benefits due to a moderate to severe case of neurological lyme
disease. I feel a little strange about the whole thing. I'm not sure
whether to be thankful or laugh or cry at the situation.
What I've decided is that I'm actually kind of mad. A Social Security
judge was able to recognize how debilitating lyme disease can be, but
not necessarily most of the rest of the world including some family
members and friends.
A close girlfriend of mine was very recently diagnosed with lyme
disease and I've watched as she now struggles with the idea that her
small kids may be infected. She went to her pediatrician last week to
request a Western Blot Test and managed to keep her cool as that
doctor yelled at her, refused her request and slammed the door behind
her.
It's finally time for me to do something if I can. There is no support
group as far as I can tell in the Cambridge/Somerville/Boston area.
I'd like to take that challenge on, but am unsure of where to begin.
Would anyone be able to give some feedback about the process or how to
start?
I have been getting up the nerve all day to try and write "my
story" down and start by sending it to my family. I feel that I have
to begin to feel more comfortable talking about this stuff. I have
a very hard time getting it out without tripping all over my thoughts,
without severe panic, but it's too important and I am too mad, which
is a great motivator 
Thanks so much, Klipper
"When I was diagnosed about 18 months ago with fibromyalgia, I didn't know where to turn. I got on my computer and looked for a support group where I could talk to other people with the same disease and get some help...Information, suggestions, mostly just what I can do now that I have this.....disorder/disease/syndrome...I didn't even know what to call it. I found MDJ, and yes, there was a support group for fibro. I started a post, and figured I would never get an answer. However, very quickly I was welcomed in, and became really involved in the group. I received help, support, friendship and the feeling of being truly cared about by these strangers who had become like family to me. Now, I have been here for about a year and a half...I have become a group leader, and love every minute of it. It is so wonderful to be able to help others. I still receive help and answers from the members in this group. The fibromyalgia is where I go to help, support, listen, care and even laugh. I don't know what I would do without this group." (mabri)
