Saturday, March 14, 2015

Goals achieved!

When I left the LDS hospital Sept 2011 I wanted to accomplish 2 main goals.
1. Increase awareness about Amyloidosis and educate physicians and patients about the disease and symptoms to help with earlier diagnosis.  As with all rare diseases, early diagnosis is critical, even life saving.  I have been teaching everyone I run into about my disease. I even held a candle lighting for Rare Disease Day in 2013 in our park which was covered by a local newspaper.

2. Second goal was to start a support group for Amyloidosis in Utah since the closest one is in Denver.  Denver has worked only because Lindsay and Stan live there and Lindsay is kind enough to drive me around and go to the support group with me.  I was contacted by the founder of the Worldwide Online Amyloidosis Support group, Muriel Finkle . She said Huntsman had contacted her and want a support group in Salt Lake City Utah. I had left my cards with them, with LDS BMT and with physicians of mine in Logan and Salt Lake. I am thrilled to look forward to the first meeting on June 13. 

I have noticed that this year has been the really normalizing year.  I had PT to work with muscle fascia release which has given me  a PAIN FREE life.  I am able to exercise now.  I am building my stamina.  I feel normal mostly. My endurance and my lungs are still not up to par. When I look back 4 years, I would never ever of thought I would be this good now.

Life is so good.  I have come to accept and truly enjoy a slower pace, more opportunities to visit people, look for daily chances to brighten a day. I and immersed in family history. I am trying to write my Grandfather and Grandmother Watterson's histories.  What a treat to find out so many things about them.  Oh, how I wish I had know them better.  Along the way I have even learned new things about my sweet mother who has been gone 42  years.  That's a long time to try and retain memories.

New Goals are to finish histories and update their parents histories.  This is how we get to know and appreciate them. Long overdue.

1 comment: