After both kids were born, I still wanted to be tested to find out if I had Huntington's Disease but I obviously didn't have a reason to rush it now. From the information that I received from the Huntington's Disease Society of America, I did find out that I needed to get any insurance in place that I might want before I tested. I had life insurance but I didn't have long term insurance which they highly recommended. So we had our friend, Todd, to start searching for the best long term care insurance he could find. Believe it or not, it is hard to find for a 26 year old. But we did get it and we are very thankful that we have it. Every year when we go to Convention, we meet people who wish that they had long term care insurance because once you start showing symptoms of HD, obviously they will not give it to you. Todd did tell me that I needed to have the policy in place for a year before I was tested - just to be safe.
After Shelby was born was when I started having problems with depression that I couldn't bounce back from. I started on medication and every time the dr. tried to take me off of it, I just couldn't. Of course, the fact that I was having depression concerned me but the dr. kept telling me that it was probably just post partum and had nothing to do with HD. After Cole, it continued to get worse and I realized that I was never getting off the anti-depressants. Or should I say Chip really didn't want me to go off of them!? :-) In 2002 I also began having headaches that I couldn't get rid of. The dr. thought it was stress and kept me on muscle relaxers and anti-inflammatories but they were non stop so he sent me to a neurologist. Do you know how nervous I was to go to a neurologist for the first time? It felt like a bad omen. I dreaded it - not because of the headaches but because I knew I would have to tell him about my being at risk for HD and telling a neurologist made it real. Well he examined me and said that I was having migraines and rebound from too much ibuprofen. After much medication and injections, they got a little better. But for most of you who know me, you know that it is a rare day that I don't have a headache. I try to be thankful that they are not migraines very often. Anyway, during the examination, he checked my reflexes and checked them again. He asked me several questions and explained that my reflexes were way too jerky (there is a medical term but I don't know it!). I explained to him about my being at risk for HD and he looked very concerned. It was then that I knew what I had felt in my heart for a while - I was beginning to show symptoms. He told me that I needed to see a movement disorder neurologist at Vanderbilt or be tested but HD was beyond his expertice. It was also at this time that the Huntington's Disease Centers of Excellence began recruiting for people who were HD positive to participate in observational studies. These were the first studies being offered and I was very excited about them and very interested in participating in them. So between the neuroligists exam and the new studies coming out, I thought that it was definitely time to be tested. Chip was very supportive but my family still thought I was crazy. In fact, once I made my first appointment, they would not speak to me about it all. I had to first be cleared that I was sane enough to go through the testing. Ha! Ha! And then I would go to Vanderbilt for 2 appointments. The first day, I would see the genetic counselor, a movement disorder neurolgist and then if I still wanted to go through with it, they would draw my blood. On the second visit, 2 weeks later, they would give me the test results.
Tonight I am thankful that my kids still like doing things like making beds/tents out of big boxes . :-)
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