Greetings from Anchorage, Alaska!
It was great to be able to go to the Rare Neuroimmunologic Diseases Symposium in Baltimore in August 2004. My family and I have never met a more accepting group of people in our lives. People came to gather information and gain support from others who knew what they are going through. I enjoyed being able to laugh about some of my oddball symptoms with others that have had the same things. It was nice to be able to hear the opinions of how people thought certain medications affected them. It was helpful to be able to share tips of how we have adapted for coping with the challenges of daily living. Considering the trials we have faced and continue to face, we are an upbeat group of people, and the symposium was so positive and encouraging to attend.
I think one of the worst aspects of TM is that it is often an invisible disease. In my case (except for the month I was in a wheelchair), there was no outward sign that I was feeling so terrible. I looked pretty good and normal which was frustrating. People thought I was fine and didn't understand my limitations or pain. People would yell at me for using my handicapped parking permit. I had greeters at a store tell me that I couldn't use the electric cart because I looked fine. My legs were so wobbly and off balance that I took the electric cart anyway. I wouldn't have been able to purchase the few items I needed otherwise.
I have found one person in Anchorage with TM through the TMA. Her onset was in 1986, and she has been a tremendous wealth of information and source of encouragement for me. I need to know that I am not alone. I need to bounce ideas off people that understand. I need to feel camaraderie with others that use the new vocabulary that I have to describe the pain. I need the empathy that talking with another person with TM brings. I feel better knowing that there are other people who are indeed one in a million out there in the same situation I am. I am not alone!
My husband and I volunteered at the symposium in August to start a support group in Alaska for people with TM. We want to encourage, listen, laugh, cry, and provide support for others in our shoes and those that are going through endless tests and specialists and still do not have a diagnosis (it took three months for me to be diagnosed). Our motto is "PAIN IS INEVITABLE, MISERY IS OPTIONAL".
Let's be there for each other. Please feel free to contact my husband or I.
Jennifer
