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A long over due update...

Posted Mar 24 2013 9:09am
Wow, I can not believe I have not written on my blog for three years, and that it had been three years! I was sharing my site today on a support page on Facebook and I came back to my blog. I think that I did not write because after my transplant I just needed so badly to focus on getting healthy, taking care of myself and my family and getting away from cancer. I feel like I have done those things in the last few years. I am doing well for the most part. In August 2012 I was able to go off of my immunosuppressive drugs. It felt great to be free of the restrictions I had for so long. A few weeks later, I developed shingles. It was the worst pain I think I have ever experienced. A month later they were finally under control. Since my transplant I have had a lot of pain, joint pain. It got worse and worse, I went to a rheumatoid doctor and we thought it was arthritis, and several others. I had a lot of symptoms of chronic graft vs host disease. The only solution was to go back on the immunosuppressive drugs. I fought them for a little while to see if it would get better, but it didnt. In January I went for my three year check up at Moffitt and my doctor put me back on the drugs. My liver functions were decreasing, also another form of chronic graft vs host. I felt like it was a huge set back, but have since realizes it is not, it is part of the transplant journey. My doctor described it to me fantastically. I had a transplant to cure cancer, as of right now we have done that. I been in remission for 3 years, 4 months and 11 days- amazing! But as a downside I have a chronic disease that needs treatment. That helped me to see it in a different light. I began the medicine and am feeling some relief but not 100 percent. So for now I am back to the restrictions, which seem easy now since I am used to them, and trying to listen toy body more, and rest. Not an easy thing to do with three active kids. Hopefully one day physically I will not be in pain or so stuff, I see it improving but not as much as I would like. For me, the double umbilical cord transplant has been my miracle, and I am thrilled. Cancer and aml is still a huge part of our lives and my sickness comes up every day, no matter how hard you try to get past it. Our lives changed because if it and it effects many many things. But I am here and I have seen many milestones in my children's lives I might not have. Christian is 11 and started middle school, playing baseball for school and little league teams and growing into a teen way to fast. Sofia will be 9 soon and is in 3 grade. She is playing baseball and loves doing and enjoying gymnastics and dancing. And Olivia, she started kindergarten this year! Wow, she was 8 months old at time of my first diagnosis. She is a ball if energy and loving little girl, she will be 6 in a week and a half! I am lucky to have had all of the support I have, and the best care givers in the world. My story is a work in progress every day, and I have been wanting to update the blog to show how well I am doing, and how my story is turning out. I obviously have left out alot that has gone in in the past few tears, but I hope to update that soon. [IMG][/IMG]
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