Dealing with my Diagnosis

There is a constant weight on my heart. When I smile at someone for no reason, it sort of feels like a lie. I'm mostly happy, but now I have the constant cloud following me around. Sometimes things make me sad. Like when I joke with someone about what things will be like when I'm their age (they are 68). I used to dream about being old and retired, spending my days doing whatever I want with my husband by my side. Probably not going to happen. Sure I can be hopeful that they will figure out a way to lengthen my life, but as of right now, I don't get to be old. 

Predictably I want to ask, why me? But there isn't a reason. I feel a little lost. I don't know what plans to make anymore. I don't know what my goals should be if I only have 15-20 good years left. That's a lot of time. That isn't a lot of time...

Some people don't understand. They think that my diagnosis is not as serious as it is. I don't want to be all depressed about it, but I wish they would get informed. I don't want everyone to be super sad, but I don't want them to be too positive either. It just isn't realistic at this point in time. If you need to tell yourself that it will be okay then go ahead, but don't tell me. Does that sound grumpy? lol I guess I'm having a grumpy day. Go figure.

I go along not thinking about it because it is too sad really and what's the point in being sad? But then it hits me now and then. I have to pray to not fall into a black hole of depression. I don't want to be sad, but I don't know if I'll be able to hold out forever. I might have longer than I think, but I can't really count on that. Maybe I'll wait five years and see if they find a treatment by then. I'll wait five years to get sad. Yeah, that's a good plan.

God's Plan and HD

In church last Sunday the message was about suffering and why it is necessary as a part of God's plan. Wasn't that just the perfect topic to discuss days after I get my results? Many people want to blame God when terrible things happen in their life and they wonder why he would let such things happen to good people. To me, it seems, that if you believe in God enough to blame him for the bad that happens, shouldn't you have enough faith in him to know that there is a bigger picture here that you can't see? According to my pastor, and well, the Bible, suffering is an important part of all of our lives.
As it says in Romans:5, "And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us."

Discovering I Had Huntington's Disease

Two years ago, I went to reconnect with my grandma on my father's side. There I learned that my grandfather had died years ago from Huntington's Disease. I knew nothing about this disease at the time so I went home and began to research. This is when I discovered that HD is a genetic disease that my father had a 50% chance of having. I was pretty upset at the idea that my poor father whom I had just gotten in touch with after 15 years could have this horrible disease. We hadn't spoken much, but there was something about his mannerisms that made me worry that he did in fact have the gene.

I told my closest friends and family about my discovery, and about the bad news... my brother and I had a 25% chance of inheriting the gene as well. I was definitely concerned about this possibility because if my father had this disease, which he very well could have, then I would have a 50% chance of having the gene as well. Those, to me, were not good odds. I didn't feel optimistic, but rather was realistic about the fact that I could have the gene.

For awhile, I set this issue aside and continued to live my life. I wasn't prepared to do anything about my findings just yet. I needed time to think and research the realities of this awful disease. A lot of time went by and finally I knew I needed to get tested. I wanted to start a family and I needed to know if I had the gene so that I wouldn't unknowingly pass it on to my children. That's a thought I cannot bear.