The Roadback Foundation Bulletin Board has been an incredible gift to me within the last week. Only one week ago I was told that I might have scleroderma, after my modified barium swallow and cine-esophogram showed esophageal dysmotility with an apparent absence of correct wave function.
Then, only a few days later, I found the rash on my back that could be my first skin involvement. It seems like things are moving very quickly... but I've had signs for a few years now that my body wasn't at 100%. The blessing is that with early treatment I feel there is such a strong chance that I can live a long and productive and healthy life.
In only one week, thanks to the amazing volunteers and members of RoadBack, I have located both an experienced AP (Antibiotic Protocol) doctor and a Lyme Doctor. I have been given a visceral sense of hope that I really can heal from even this. I've ordered my Lyme test kit and I'll get the results of my ANA and Scleroderma antibody tests next week. It's ridiculous that I am so nervous about those results, when clearly they are just a number and have no effect whatsoever upon my actual physical wellness.
Today, the three books I ordered from Amazon arrived. They are "The New Arthritis Breakthrough" by Henry Scammell, "Scleroderma: The Proven Therapy" by Henry Scammell and "Scleroderma: The First Year" by Karen Gottesman. I've just put the kids down to nap and plan to spend the afternoon reading through them.
In the long term, especially once I've started treatment, I really don't want my life to revolve around scleroderma or MCTD. I hope that one year from now, these things will just be one small facet of who I am... even if I still have to blend my food for the rest of my life. There is so much wonder and beauty in the world, I can't wait to get through this so I can get back out there and experience it with my family.
Much love.
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