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.

Reasons to be Happy Despite HD

My husband- He is so strong and my soul mate. We are going to do beautiful things together.
My friends- I know I can lean on them whenever and I can count on them for a listening ear and a laugh!
My family- Who could love me more? They feel my pain as I do and they will be there for me with whatever I need.
My dog- He loves me lots and doesn't care about anything else! He is a comfort to me for sure.
The outdoors- When the weather is nice and it is light outside, I feel better always.
My jobs- I get to interact with great people and make money doing it!
God- I can turn to him in my times of need and in my joy. He is always there and reminds me to appreciate what I have.
My future child- Some much joy is still to come once I have my own child. I can't wait. :)
Traveling- I have so many adventures to look forward to such as (Ireland, Italy, Spain, and Mexico) I am so excited! :)

There is a lot to be happy about. I am blessed despite having HD and I pray that I am continually blessed until I leave this Earth. If I have all of these things, then I can and will get through these trials.

Life Planning and HD

Today gets two posts (and no I will not attribute that to an easy work day!)... ;)
As a 25 year old woman that is gene positive for HD, I have many decisions to make. The goals and dreams I had before Huntington's do not go away, but they must be reevaluated, changed, and in some cases given up.
Things I need to consider: career plans, going to college, having a baby, vacationing (gotta work on that bucket list), and retirement saving (for the hubby anyway). Most significantly, I have a HUGE concern over money. Everything I want to do costs money, and I don't have time to save up and work for 20 years before I get these things out of life. Do I give them up? Which goals should I disregard? It's not really fair that I should have to is it?

Hope and HD

Wanna know what gets me through the day? The term gene silencing. This is a therapy that scientists are working on to treat HD. It could maybe one day delay symptoms, take them away, and perhaps even reverse symptoms! Well that would be nice! They are still a ways off it seems before they can begin doing human trials, but it seems hopeful. And what more can I ask for really, but HOPE. I pray, for those that have much less time than me, that they figure out a good treatment as quickly as possible. 

Gene silencing involves stopping the mutant Huntingtin gene from releasing the mutant protein that causes cell deterioration. Here is a link that can more completely explain what it is- Gene Silencing.

It also seems that certain supplements and a healthy diet along with A LOT of exercise can help delay symptoms or make them less severe. DEFINITELY worth a shot. I will be researching the subject thoroughly and creating a separate post about it, but today's topic is HOPE and if being super healthy can help, I am on board. Though if anyone wants to give up laziness and delicious foods with me then that would be AWESOME.

Here is a link to some videos on HD- HD in a Nutshell. Just in case you needed a bit of info.

In regards to hope, lots of prayers are appreciate and no doubt helpful! God will do as he sees fit, but no harm in nudging him along is there? haha 

There is a LONG list of drugs/supplements that do this and that and may or may not help, so if anyone enjoys researching, I could use some help finding info and articles on the subject. There are a lot of conflicting things said so we must be diligent.
I know they will figure out a treatment that will save lives or at the very least lengthen lives drastically! I can't wait and let's all HOPE that those lovely scientists figure it out in time for me.

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.