Wednesday, October 3, 2012

March 8, 2010 - You are not alone

So my internet research was moving right along prior to Mom's March 9 appointment with her oncologist, and I was starting to find other people online with amyloidosis. Through the amyloidosis foundation web site I found the amyloid listserv and subscribed to it:

But the real find was on March 2, 2010 when I discovered the existence of support groups around the country, AND they have one that meets in Dallas, AND the next meeting is March 13. It's hard to believe in retrospect that it took me a month to find that, but thank goodness I did. At the time I felt like the luckiest boy in the world:

So I sent some emails to the two RSVP addresses to confirm the March 13 meeting was on, telling them my mother and I would like to attend since she was recently diagnosed. One of the local organizers recommended I inform the President of the Amyloidosis Support Groups, Muriel Finkel, that I was planning on attending. So on March 8, 2010, I sent my first email to Muriel Finkel. She wrote me back within 20 minutes and recommended I also join the online support group in Yahoo groups. Later that day I joined the online group. When a new member joins, an email is sent to the group with the following subject line:

Welcome New Member - You Are Not Alone

When you find out you have a rare disease, especially one you've never even heard of before, it is a good feeling when you realize you are not alone. I guess there had been a lot of new members joining the group lately, because Muriel replied to my New Member message with this:

So many newbie's......make sure you get a second opinion at a center of excellence and experience...on the website <> under medical links....your local docs can work with these experienced doctors and learn and all will be the better for sure and watch the animation on the top right of the website under the map/flag and read all of the information on all of the will be tested:-)

Take note of the phrase, "a second opinion at a center of excellence and experience." It will come up again.

So it's March 8, 2010, the day before I go with Mom to her first appointment with her oncologist since the diagnosis of amyloidosis. I have found an online support group and I'm planning on attending a local support group meeting four days after that. Things are moving along at a good pace, so maybe will start getting some answers and have a better idea of what's going to happen next. Maybe, maybe not.

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