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

Where I'm at Now

It has been awhile since I last wrote a post. I have been very busy dealing with a lot of crap. I just wanted to post an update of where I am at mentally and emotionally right now. First, let me say that dealing with my diagnosis without Sergio is very difficult. He is my greatest source of comfort and support and I only get to speak to him for 15 mins a day. Really, difficult is an understatement.
Since I was diagnosed, I feel like every time I forget something, or mess up when trying to multi-task, or even type the wrong word, I think, oh maybe that is the start of my symptoms. No one can say it isn't, we will just have to see...
My latest thought is "Wouldn't it be nice to just forget about IVF and get pregnant naturally. If the test says the baby is positive, I can get an abortion." I would have to work on wrapping my head around that concept. I wish I had a clearer stance on the subject, but it is very personal and hard to even contemplate without actually being pregnant. It would be so hard, but then again maybe the baby would be negative for HD and we can just move on happily. Oh lord, I have to make difficult decisions.
Since I am alone and life is so difficult, it has been impossible to be positive. I honestly don't feel any optimism at all. I have always been a realistic person anyway, but when life was good that translated into happiness. Now that life is awful, I am not happy at all. I am able to talk to others and laugh and have a good time in the moment, but overall, I am depressed. I feel as though there is nothing good in my life and wonder if life is worth living at all. I feel like my future has been taken from me. There is a chance that with medication or treatment that hasn't been developed yet, that my future could be given back to me, but for now, it is gone. That really changes my thought process and my outlook on life. How could it not?
This probably sounds really depressing, but this is my reality. I still have hope for good things on the horizon, but right now things are difficult. If I could get a definite answer as to what is going to happen to Sergio and it wasn't awful news then maybe I could feel a little better. Not knowing is the worst.
I want to travel to Ireland and see the magical country that I have always dreamed of. However, I don't have the money and I have to decide what will win out, logic or my depression. I feel like I need this trip, but it isn't practical at all considering all my other debt. We shall see I suppose. Though I am a very logical person, I like to make decisions with my heart.
Prayers are needed and any support you can offer.

Thanks in advance.

Having a Baby and HD

There are 3 options out there for someone who has a genetic abnormality to have children.
1: Have children naturally and put them at risk of HD.
2: Conceive naturally and test for HD at around 12 weeks. Have an abortion if test is positive. Have the baby if test is negative. 50% chance of either.
3: Go through IVF with PGD. This will guarantee that the baby does not have HD.

I want to have a child of my own very badly. I want my own little creation that is half me and half my husband to love and cherish. The question is, "What am I willing to do to make that happen?"

Five More Years and HD

Luckily, not many people can say they know what it feels like to be given an expiration date on their lives. We all know it could happen at any time, and we hope that it doesn't for a long time. But being given a prognosis and a deadline is very hard. In my particular situation, I don't know specifics. Based on the experiences of others I have heard from, my body might not die for another 30 years or more. Obviously that is a good long time. Unfortunately, for me, this isn't the only deadline. There is another concern.

My brain is going to start dying much sooner than my body. MUCH. This disease can last for 20 years from the first symptoms. I know of people that start having symptoms at 30.

The National Convention for HD

Over the weekend I was lucky enough to attend the HDSA National Convention for Huntington's Disease in Louisville. It was too expensive for us to pay for at the moment. But my genetic counselor nominated us for a scholarship for first time attendees. A very generous gentlemen paid for our hotel room and admission to the convention. We were also given money for gas to get there and food. It was very kind!
Unfortunately we couldn't make it to the convention until Saturday so we missed what happened on Friday. I was very glad to hear what the speakers had to say on Saturday though. I wouldn't say it was necessarily new information, but to hear the scientists talking about what is to come and the progress that is being made was great. They are working on some promising things that I'm so grateful I have time to wait on. It sounded very hopeful for me. Every bit of progress they make for Huntington's disease makes me feel that much better that at least by the time I am experiencing symptoms, maybe there will be a treatment on the horizon, or better medications, and maybe better help from our government when it comes to health care. We will see.
The main thing I took away from the convention was that I need to sign up for every study I can. I already wanted to, but they were quite adamant about how we can help research so much by participating. It will be good to contribute to the cause. I wasn't able to sign up for a study this weekend, but I will be on the look out from here on out. We are already planning to attend next year's convention. It is in Dallas.
Being surrounded by all of those other people who have HD was nice. It is good to know you are not alone. We broke into workshops that were dedicated to specific topics. I sat in on 'Coping with a Positive Result' and 'Family Planning'. I enjoyed hearing from the speakers and more importantly the other people in the room. It wasn't that informative though. I must know too much! haha 
Overall, it was a very good experience and I am glad I was able to go. It is a great way to stay connected and informed and be surrounded by people in similar situations.

Stress and HD

I've been experiencing a lot more stress than before I discovered I had HD. This stress is brought on because of financial reasons and also because of my lack of time. I feel rushed. I don't have forever to save for a baby, or a house, or anything. Even though I was very conscientious before, I was still pretty worry free in the big scheme of things. Now I feel a lot of pressure to hurry up and get my life going! I've been reading about IVF and that stresses me out! I haven't even met with a doctor yet, but I already know that it might not work! I may have to try IVF multiple times to get pregnant with no insurance coverage at all. Who has that kind of money? It costs like $10,000 a try! I'm willing to pay the ten grand, but geez the chances of getting pregnant on the first round are not high! So many things can go wrong at the various stages of the process. It really sucks that I might have to pay 2x, 3x, 4x that amount! Oh lord, I can already see the debt piling up! We will never get out of this hole. Should I just give up on my dream? Damn...

This and That and HD

So after 3 weeks and almost 2 days here is an update to how I am doing.
I went to the doctor on Wednesday to get a referral to a fertility specialist. I will definitely keep you posted on how that goes. I don't know what the doctor will say. It feels so odd to be going to a fertility specialist when I have never even tried to get pregnant before. I am definitely in the minority for several different reasons. What sucks is even if the doctor wanted to get started right away, there are many things to consider before getting pregnant. The primary concern, of course, is money. We need a lot of money to have a baby and then a lot more to care for the little bundle of joy. It is a rough road we are on, but it is the only road for us.
I still haven't cried. If I wanted to, I could of course, but that would require a lot of dwelling on the bad. It can't be changed so I am choosing to set that aside. However, it is always in the back of my mind. I get jealous when other people do so easily things that I cannot do. I also get pretty down when I think about the things that a short life takes away from me. The good news is, it isn't guaranteed that it will be taken away forever. I am still working on a list of supplements and way to delay symptoms as long as I can. I will truly be grateful for any extra time I can get before I am mentally gone from this world. I also remain hopeful for a treatment.