Forty-seven months ago I received news that would change my life, namely that after nearly a year I would get a life back. Not my life as I knew it or anything that resembled my old life, but a new life that I could make mine. Remission is a beautiful, wonderful word and yet people forget that while it can be permanent, it doesn’t mean that it will be.
I had an autoimmune disease that is so rare, there is very little studies or information about it. The Mayo Clinic and John Hopkins believe it only affects 1 out of every 1 million to 2 million people. After ten months of living in and out of hospitals, chemo, plasma exchanges, dialysis, other infusions, blood transfusions my body finally decided enough was enough. I was at my worst, facing the likelihood of losing my left arm while they prepared to put me on a transplant list since the active stage of the disease had finally passed, when all of a sudden I was better. As in within 72 hours my numbers went from the worst they had ever been, indicating things on the other side of the spectrum of ‘recovering’ to better than someone who had a successful kidney transplant.
