Testing

We have Chip's family coming this weekend and I have been cleaning this morning. But now I'm tired and need a break so I thought I would blog a few minutes! I know this is taking me forever to catch you up but I promise I'm hurrying. When I left off, I had made the decision to be tested and find out for sure if I had Huntington's Disease. At that time it was 2003 and I was 27. I made my first appointment in June and got my clearance from a psychiatrist that I was able to handle the testing. Like I said before, once I made my appointment, my family would not speak to me about it. They thought I was making a mistake. I talked to my pastor about being tested and he was very supportive. I told a few friends but not many. After the way my family had reacted, I wanted to wait and find out what the test results were. I was nervous but ready to get on with the process by the time the appointment came. One of the questions that the genetic counselor asked me was whether or not I thought I had HD and I answered yes. In my gut and my heart, I just knew that my body and my mind were changing. We had to answer a ton of questions - what if I did and what if I didn't? Then I had to see a neurologist that specializes in movement disorders and he examined me and then went out to talk to the genetic counselor. They came back in and wanted to know if I wanted his opinion of whether or not I was showing symptoms and of course I said yes. He told me that he believed I was already showing early symptoms with my abnormal reflexes all over including my eyes and my depression. This did not surprise me that much since it was things I already knew. After that the genetic counselor drew my blood and made my follow up appointment for 2 weeks. I was very calm through this whole process. It just felt like something I had to do. After I got back from the testing that day my mom called me and asked me how it went and I told her what the dr. said and I remember her saying that there was no way he could know for sure. My older sister still thought I was making a mistake and so it was difficult talking to her for a while. I kept busy for the 2 weeks and tried not to think about it as much as possible but it still seemed to take forever. We sent the kids to Chip's parents for the night because we weren't sure how we would feel or act and we didn't want them to know what was going on. I remember sitting in the waiting room thinking "it's not too late to back out." And when the genetic counselor came to get us I knew by the look on her face. It wasn't sad but it wasn't happy. As soon as she sat us down she told us that she wouldn't make us wait and she showed me my results. I definitely had Huntington's Disease. For those of you who know what it means, my CAG repeat count was 46. And do you know what I said? What now? I didn't cry. I was numb but I wanted to know what to take, who to see and where to go. I think that surprised her but she gave me some information and talked with us a while before we left. As soon as we got in the car, our phones were going crazy so we barely had time to take it all in. Do you know how we spent that night? We went to Media Play where I got several books I had been wanting, Chip got another season of the Sopranos and we got take out from Outback. We went home and spent the night escapaed in our own little worlds. That is how I would spend the next several months, trying to pretend nothing had changed.