Not your typical, everyday post.

Before I begin with all the information and explaining, I need to put a sort of disclaimer on this blog. My emotions are raw, my nerves are shot and my heart is sad. This is the hardest thing I've ever had to write, so I will try my best to make sense of it for you.

Yesterday was my 31st birthday. My mom and I were in Chicago for all the pretesting for the stem cell transplant and my friend Claire was visiting. We were all three hanging out in our hotel room and the phone rang about 10:30. It was my nurse and she told me that the doctor needed me to come to his office at 3:00. He had gotten some test results back and wanted to discuss them with me. My heart immediately dropped and I became instantly anxious, but she couldn't tell me anymore. The next several hours were unbearable as I waited. I feared he had found something wrong with my heart and wouldn't be able to do the transplant. The doctor had stressed over and over how important the health of my heart is for survival through the procedure.

The time came and my mom and I went to the office and waited. The doctor came in and as the words came out of his mouth, I heard what I had known for hours, months maybe, even years perhaps; I'm dying and there's nothing anyone can do to change that. As reality replaced my disbelief, panic and nausea followed, tears stung my eyes, I felt his hand on my shoulder and glanced at my mother's face. The pain and sorrow I saw was more than I could stand. There are no words for that kind of devastation.

You see, the doctor explained that my arterial pressure is too high in my heart. The blood doesn't flow easily through my arteries from my heart because the fibrosis in my lungs is so bad. My lungs sort of act like a brick and keep the blood from easily getting through the arteries which builds up pressure in them. In addition to this, my right ventricle wall is damaged beyond repair and to an extent that would, when coupled with the high arterial pressure, cause death during transplant. So, no transplant for me.

The next question is, what else can I do? The short answer is, not much. My plan at this point, is to return to my rheumatologist in Nashville for treatment. I will be able to get some meds and oxygen that will make my quality of life better. There is no cure for scleroderma and outside of the stem cell transplant, there is nothing that addresses scleroderma directly, only meds to control symptoms. There are a few experimental drugs being used for treatment of scleroderma but none of the results have been particularly consistent or promising. I will of course look into any options, including these drugs and follow the advice of my doctor.

Does this mean I have months or maybe years to live? I don't know. And I don't want to know. I plan to find some way to be at peace with this, do what I need to do to stay as healthy as I can for as long as I can and I plan to soak up every minute I have left with the people I love, doing the things I love. I have so many people who are always on my side. Many of you worked hard to support me and see me through the past several months and I am grateful. I wish I knew how to express the depth of my gratitude. "Thank you" is all I've got.