Its Rare Disease Day! And while I know all of you know about rare diseases since you are my facebook friends I hope that many of us will have the opportunity to increase awareness. While I will not be in D.C. talking to senators or congressmen (okay their staffers) or surrounded by other advocates at the NIH I am grateful for the possibilities today holds. This year the rare disease community lost Sam Berns a 17 year old with progeria, and he had such a great outlook on his disease All in all, I dont waste energy feeling bad for myself. I surround myself with people that I want to be with and I keep moving forward. And I think that is something that all of us, whether or not we have a rare disease, should do. A good friend said to me last night that he was kind of whiny over something superficial and he couldnt imagine what hed be like over real problems. But these long term diseases are the refiners fire. There really isnt room for the superficial stuff and our best character traits come to the surface. Not saying that we dont have whiny and superficial moments, we do. But I am amazed at the changes in my personality over the last three years. I have gotten to meet some of the most amazing people because of this disease. And Ive gotten incredible opportunities. To get to go to D.C. and South Carolina last year was amazing. And I get to write an amazing blog encouraging people who are going through the same process. Thank you, to all of you, you are my amazing support network. You have listened on bad days, watched my children, brought me meals, encouraged me with Bible verses, offered me places to stay when Ive travelled, visited with me when Im ill, etc. Etc. Etc. You are my village and I could not do this without you. I love all of you so very much.
Posted on: Fri, 28 Feb 2014 18:17:13 +0000
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