Support Group

Sunday, October 23, 2011

I didn’t know my mom was sitting up at night worrying about this too. One night, in the middle of the night she was online researching and she found a support group. It was a Yahoo group and she wrote a lady who had her pancreas out. The lady gave my mom her phone number and told her to have me call her. After holding on to the number for a few months and thinking it would be weird to call I finally called. I had no idea you could live without a pancreas! 95% of people do not know this, and those people include doctors! She was a teacher too and had her pancreas out by Dr. Sutherland and the University of Minnesota. This was the first time I had heard of Dr. Sutherland, but would not be the last. She was doing great and had islet cells transplanted into her liver to lower her risk of becoming a brittle diabetic. It was working and two years out she was loving life. 
I’m not sure why I didn’t think to look on Facebook for a group but one night I did.  It was like hitting the jackpot! I found a wonderful group of people all suffering from the same thing. Many had TP-AIT, total pancreatectomy with Auto-Islet Cell Transplant. They were alive and living life pain free without a pancreas. Many were diabetic, but diabetes is at least manageable. Facebook has saved my sanity, I bet Mark Zuckerberg never thought it would do that! Facebook has brought me to many people who know my pain, have experienced my frustrations, and understand what it is like to have a disease that is misunderstood by even those in the medical field. In my group no one is from Arizona. I remember feeling like I was all alone. I rarely hear of anyone knowing someone who had CP. Facebook has changed that for me. My friends from my group exchange phone numbers, offer condos/houses to stay at while getting treatment, offer help at the hospital, and offer so much support. Most of all, my group has offered me HOPE

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