1.19.2015

The Stars aligning for me: Patriots Game


 I have been a Patriots fan my whole life.  I was born and raised a football fan and Patriots fan by my Dad. He truly loved football almost as much as he loved my sister and I. He was the quarterback at Abington High School and football was in his blood was and since he had two daughters and no sons he was determined to make us fans. He bought us Pats things and I quickly fell in love with the Patriots. Even when I lived in Kansas for 15 years I was stilll loyal to my Patriots and tried to convince my friends to become fans.

I have wanted to go to a Pats game  my whole life especially this season. Due to my Huntingtons Disease getting worse I didn't know if would be  too sick to go later in life. It was a now or never situation. My family looked at tickets this season because they knew how deeply I wanted to go but we decided that tickets were too expensive and we never went. I was starting to believe I would never get to go.

I had a guardian angel give my mom two free tickets to the AFC Champion tickets and she cried when she got them  and cried when she gave them to me. I was beyond estatic to attend that game of all games.


 I literally had the time of my life at that game. It was so surreal for me to be there and there were so many happy moments where I tried to take it all in. We had amazing seats and we we were warm and dry despite that it was pouring rain we were under an overhang. The game was incredible and it was amazing to see the Patriots win and receive the trophy. I still cant believe I witnessed it all. 








My Dad is no longer here, he died from the same awful disease that I have but I know without a doubt that he was watching over me and that game. I also believe that's why all my stars aligned and  I  was able to go and have the time  of my life and see  an amazing game- all because my Dad is watching over me and proud of my blog, Boston Globe article, me being an HD advocate, and my strength and how I stay positive and that's his way of showing it. Patriots were our thing - we watched the  Patriots game on the last day I ever saw him at the hospital five days before he died  and the stars could not have aligned without him watching out for me. It wasn't luck it was my Dad. I believe in a heaven and know that's where he is looking down on me and Liz.

I'm forever grateful to the person who thought of me and gracesely gave the tickets. They truly made me like the happiest girl in the world.

Happy tears as I write today.


Thamks for reading as I share my HD journey and all the good and bad that comes with it- this  one sure is a great thing,
Alex

1.13.2015

Why being an advocate of HD is important



Good afternoon readers,


Today I am going to share a little about why being an HD advocate and sharing my story with the world is so important to me.


I have hope and believe in a cure of Huntingtons Disease. In order to find better treatments and a cure there needs to be more awareness and money raised. At the HDSA convention it was said that HD is not a rare disease but a rarley know disease.

Another reason why it was so important for me to begin my blog in the beginning every where I went I felt like the elephant in the room, constantly trying to figure out who knew and didn't know. I had the fears of what people think of me.  I was a 23 year old, showing signs of an abnormal disease at a very young age for HD. By starting my blog and sharing my story with the world all those thought went out the window.

I refuse to let this disease get the best of me. Being an advocate takes all my frustrations, angers, and fears about HD and turns it into a positive light. I will not stop until there is a  cure.

I love advocating for all of those people who lost their life, who are too sick with HD to be an advocate- especially my Dad and family.

Did I ever think that my sisters idea for me to start a blog would come to this, having someone write an article about my HD journey, and having people I don't even know around the world read my blog?? Not once - to me I'm just a normal person who has become an advocate for a rarely disease.


If you have been inspired by my story and wonder what you can do-tell someone about HD, share my blog, donate to the HDSA, or complete the HD pie in the face challenge and challenge your friend.

Continuing to live fearlessly, 
Alexandra

1.06.2015

My word for 2015 is FEARLESS

I decided to chose a word for what I wanted my new year to be. I was back and forth with joy, happiness, love  and fearless but after my ski weekemd I decided to go with fearless.

This past weekend I went with my whole family to Bretton Woods, NH for our Christmas present. I was not planning on skiing due to my HD,  my balance is awful so I thought it would be too hard, but I was still looking forward to hanging out at the lodge and shopping. On the way up my sister Liz said to me Do you want to try skiing? She put that idea in my head and I contemplated it, and then I decided it was  now or never. 
 My  HD is just going to get worse, so I decided to be fearless and went for it.   I went with my sisters and their boyfriends and they were so patient and understanding of my situation. The first time down I fell a few times but wanted to keep trying. The next time we figured out that I needed my sisters on both sides of me holding a pole that I held to balance me off and I went on 5 runs only falling once. It made my trip that I was able to have skiied with my family.  My mom cried becuase she was proud of me and
grateful I had my family helping me. My mom said I was beaming. I could not have done with out my sisters balancing me out. The whole experience was very metaphorical to me-I can't get through this HD journey alone, I need my family and friends who have all stepped up and are willing to balance me out.



To me fearless is being scared and  jumping anyways. Fearless is going for something when your afraid. Fearless is living in the moment, and taking it all in.

I believe I have become fearless when I was diagnosed with HD. I have been fearless by attending the HDSA convention, by having an article  written about my HD journey in the Boston Globe, by starting my blog and telling the world my story, thoughts and feelings, by holding a baby shark I caught when fishing this summer, by living in each moment. I have lived fearless! 


 I hope to be fearless when I stand next to my best friend Jenny as her bridesmaid. 
 
I hope to be fearless on my trip to Italy.

I hope to have a fearless Summer 2015.


I hope to be fearless at the HDSA convention.

I hope to be fearless when I blog and get my true feelings out. 

I hope to be fearless and live in each moment, taking in the good every day.

If 2015 is anything like my ski weekend it will be an incredible year!


I encourage you to be fearless and live in each moment,

Alexandra

12.31.2014

Happy new year

What a year it has been for me!! I have had sad times this year, but I have also had some really amazing, and peaceful times.

I was diagnosed with HD which has been a hard complicated journey but because of it great things have happened; I went to the HDSA convention, my sister moved to Boston, I started my blog and had an article written about me  and published in the Boston Globe, and my outlook on life was altered. Without my HD none of those the would have happened.



In the past year I had the best summer and Fall that I could ask for because I was living fearlessly and go, go, going constantly :)

In the past year I have learned what really matters and to let go of things that don't matter. 

In the past year I have grown closer to my family and friends, and I became a god mother to baby James.

I turned 24 and celebrated my birthday with a surprise party and many happy tears! 

In the past year I went to my favorite place Florida 3 times and appreciated it more each time I went!

In the past year I cried a lot - some were happy tears and some weren't but I also grew so much stronger from it. I feel stronger than ever and proud of myself and all that I have been through to come out still pushing forward :)


I'm beyond excited and ready for a new year! Some things I am looking forward  to; my best friend Jenny's bachelorette in Vegas, her wedding in Kansas, my big family trip to Italy, growing more and discovering more of who I am, my second convention in Dallas :)


What are some of your highs and lows of your year?

Thansk for reading my blog this past year,
Alexandra