One Year Post Diagnosis

It has been a year since the fateful day that I received my positive test results for HD. May 7th never used to hold any meaning for me, now it sadly has a dark cloud over it. I thought about doing something memorable today to overcome the darkness, but instead it was business as usual. 

I've had a lot of ups and downs since my diagnosis. I'll be going strong for a while, and then all of a sudden something will remind me of my disease. I still get sad when I think about not growing old, I am upset when I am asked when I plan to have children or a pregnancy pops up, I get frustrated when I think about my future that may never be...

The Bestie and I right before I got my results.

I don't allow myself to dwell on my circumstances. I have many other things to focus on and there is not much I can do right now to improve anything. I have been working on my health and fitness and I keep an eye on the support group on Facebook. I'd like to go to the National Convention this year, but the cost is prohibitive. I will have to wait until the local convention this fall. At the conventions you get to hear a lot of promising stuff about future treatments. I cannot wait until one of those treatments becomes a reality. I may be worrying for nothing...

My current goal is to save up for IVF so we can start our family. I am really going to do what I can to make that happen. I want a child so bad it hurts.
My other concerns related to HD are my father and brother. They don't know their statuses and as a result they don't know the best way to prepare or deal with it. My father is going to get progressively worse and my brother is planning to start a family. I worry for my future nephew or niece as they are put at risk. I worry for my entire family. :(
I am not yet symptomatic though at times I feel like it could be starting. Whenever I lose my balance or have trouble remembering something simple, I am concerned. I hope it hasn't already begun. I am not ready to lose myself. 
Being positive for HD has changed my point of view in many ways. It can be hard for others to understand me now. Life doesn't feel so long and as a result, the previous goals and dreams for life have been altered. A career no long seems possible. Having a family feels urgent and extremely difficult. Checking things off of a bucket list at 26 doesn't seem crazy at all. My concerns are no longer typical. My goals are now different than my friends'. I want to have a family, I want to travel, I want to do good in the world, and I want to be happy. However that plays out is fine with me. I just pray to God that it does.

This song speaks to my soul. Anyone with a terminal disease can relate to this.

"I Lived" by One Republic