Update: Me and HD

 Hello there! It has been eight years since I received my positive test results and seven years since I have posted anything new on this blog. In that time, I have been looking for my joy. I have spent my time with friends, traveling, at concerts, hiking, and doing whatever else makes my heart happy.

The five year mark for letting myself worry about my diagnosis has come and gone and in that time and I am pleased with the scientific gains we have seen. I've also discovered a supplement regimen that helps delay symptoms and I have started taking some. I'll make a full post on that soon!

A lot has changed in these seven years, importantly, I have remarried and am currently undergoing IVF with my best friend and love of my life. I'm so happy to be on this journey (pain in the ass that it is) and I'm looking forward to the future more than ever. I will make a full post on my IVF experience as well because I know how useful it is to those dealing with HD or any other genetic diseases.

In this time, I have learned the importance of taking care of my health, doing what makes me happy, and loving with no regrets. I found hope being able to take supplements and exercise in order to stay as healthy and as much ME as possible until they figure out a viable treatment. I've been manifesting love and a family as of late, but next will be a treatment for everyone affected. 💓

The Hope Walk and HD

Saturday September 12th at 9:00 a.m. is the annual Hope Walk for HD. I am happy to participate as it gives me a chance to be involved in the HD community and gives my family and friends a chance as well. I hope that anyone who reads this would either join our team No Day but Today or donate any amount they can! 

Thanks so much! Let's walk to end HD.

Join or Donate Here!


Or you can use the link on the right side of my blog. :)

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.