4.19.2015

My best friend Jennys Bachelorette in Vegas

I am so excited to be able to blog about a really amazing weekend in Vegas!

I do have to share one bad thing about my trip but this is the only low of the whole trip! While I was headed to Vegas on Thursday morning for my best friend Jennys Bachelorette with my mom and Liz, the women who was working said to me cant you stand still when I was going through security, and due to my HD I could not stand still. She mumbled to herself I guess not. Situations such as these were people are so clueless to people with disabilities is the entire reason why I blog and share my story with the world. People need to be aware simple as that.


With that situation at the airport I was not sure how my friends were going to treat me or act when I saw them. Jennys entire bridal party restored my faith in humanity and greatly helped my feelings of being lonely disappear! They treated me as the same person they have always known and loved. For the first time in a long time I felt like a young and crazy 24 year old. They treated me normal which made me feel normal. My syptomns  were great becuase I was beyond happy and I kept up with my friends and partied all hours of the day. I was proud of myself as was my family and friends! I deeply needed that trip and feel like a new person! My words will never be enough for every thing the bridal party did 
for me but thanks for making me feel like myself again. 


On Thursday I got there in the afernoon and was so excited to see everyone! That day we did some shopping, and Jenny opened her lingerie gifts from us and we had champagne and cake. That night we went to an Italian restaurant and then the casino were we stayed at Ceasers. On Friday I went to breakfast with my mom and sister, then the bridal party went to the pool at Cosmo and got a cabana we had so much fun there we did not leave until 7 pm. That night we went to Mexican restaurant and then the Marque night club. We had so much fun at the Marque!! We danced and they sprayed confetti-it was just crazy. The Marque had my favorite sign in all of Vegas it said you not in Kansas anymore!! There were a few moments that night were I was dancing looking around at all my friends who are so supportive of me, and I felt completely fearles and invincible. I was so happy I almost cried. The next morning  I went to breakfast with my mom and Liz.  I met up with the    bridal party and we went on this amazing Ferris wheel ride were we could see the whole city! then we sat by our pool at Ceasers and went to dinner at Tao. 






When it was time to say bye to them I cried and cried, they did too, as did my mom and Liz who were beyond thankful for them making me  happy. I told them I loved them and thanks for being so good to me which made us cry more.


I do want to be explicit and say I could not have gone without my mom and Liz who came to help me travel, and share a hotel with me so I could get sleep. They used their hard earned money so I could go to my best friends Bachlerottte Party because they knew I needed it. I will never be able to thank them enough and I love and appreciate them for it!


I had more fun and my symptoms were better than I could have ever imagined! On my hard days in Abington when I am feeling lonely I'm going to remember this trip and that I have the greatest Kansas friends. Even though  we are 100s of miles away from eachother the friendships are just as strong as when I lived in Kansas and I love that.

Thanks to my mom, sister, and bridal party- I'm so grateful for each of you and love you,
Alex



3.31.2015

Dance for a Cure

Today's post is more positive than my previous post- I just had to get all  my feelings out on my hard winter and now I am back to posting positve and happier post.

My friend Seth, the NYA Presidnent had organized a fundraiser for the HDSA called Dance for a Cure. I attended the dance along with my sister, her boyfriend, my mom. Stepdad, Aunt, Uncle, cousin, his 
wife, and  most of my dads family. Thank you all for coming and supporting me! It was a really amazing event. 

The turnout was outstanding for the first year having the event, and they had over 100 people there!! Events such as these were there are that many people out fighting to raise awareness and money for a cure keeps  my hope and faith in a cure alive. My whole reason for doing what I do, having my blog and sharing it with the world is in hopes of a cure. The fight in my friends in the HD community, such as Seth remind me to hold on. I believe in making the impossible possible and in miracles.


Seth had been planing his event to raise money for a cure of HD for his mother, she sadly lost her Huntington's Disease battle the week before his event. This made it that much more emotional for Seth and my thoughts and heart were with him the entire night. I just wanted him to know how beyond proud and impressed of him everyone I was with was because of how young he is an amazing event it was. I knew the first time I met him he was special and committed to his cause- finding a cure for HD. He won't stop fighting until there is a cure and neither will I!



��Help for today and hope for tomorrow ��
Alex




3.27.2015

Hard Days

So when I started my blog, I promised myself to share the good and the hard of my disease in order for it to be therapeutic for me and in order to raise awareness and be an advoacate.


Sometimes you have to take the good and the bad in life and with my HD and this week has been really hard for me. I'm dealing with hard realizations that most likely I am going to be alone in this journey. I have realized that I won't be able to get married and have a family as everyone around me is. That's a harsh reality for me a 24 year old to deal with becuase that's all I wanted in life and the HD is taking that from me.

Another hard thing for me to also deal with is that there are people who I believed would be beyond supportive to me have not been seeing me, or messaging me to see how I am. I feel as if some people deal by pushing me away when I need them to pull me in. I just feel extremely alone and lonely lately.

I do want to say there are people who are busy in their own lives but constantly making time for me and we are closer now that I am sick. I wanted to thank these people specifically- My entire Dads side, the Freniers,  my cousin Chelsie, my best friends Jenny and Emily, my Kansas family,  my sister friends, and of course my sister Elizabeth, her boyfriend Alex, my mom and Step dad Ken. I love all of you and appreciate what you do for me. You got me through this crazy winter!!



There are days when I feel so lonely here and deeply miss my friends that I say I wish I still lived in Kansas. I feel like all of my friends here have pulled away lately when I really need them. 


Let's just say I am feeling hurt by a lot of people in my life. I understand Its hard for them to see me but it's ten times harder for me to do this and fight this alone.  


I have had a lot of long talks with my mom  and sister about this lately and my mom said blog about It so I am so grateful I did. It got my thoughts and frustrations out.


Thanks for reading
-Alex


3.17.2015

Why I have the best sister ever and Pat Green Concert

On Valentine's Day I was supposed to stay at my sisters for the night and hang out with her and her boyfriend but because of all the snow I could not go. So she came for the day and hung out with me and we went to lunch and shopping and she went home before the snow started. As a Valentine's gift she got me tickets to the Pat Green concert at the House of Blues in Boston!  I was so excited to go I am in love with country and concerts from the 15 years in Kansas!

So we went to Pat Green on a Sunday night, got pad Thai first and I slept at her house after. It was at a small venue and we were so close to him. We had so much fun and we would just look at eachother and smile. I truly was taking in each moment. He was amazing and put on a great show! 

I was really happy that my sister had so much fun becuase my parents and her do so much for me I love when they let loose and have a little fun! ��♥️ 





I truly have the best sister ever- she has my whole heart for moving her whole life and her boyfriend  from Chicago to here and spending so much time with me. I am truly happy when I get to see her. I know what she had to do was not easy but she doesn't make it look that way.

I'm happy that I am happy. Having HD has completely turned my life around. There are the hard things such as being alone, not having kids, not teaching Autistic children any more. But then there are the great things such as  living in the moment,  going on more vacations (blog about Italy trip to come!!), being fearless And passionate, having Liz live here, having the love and support of family and friends, being in the globe about my HD journey and loving people deeper! 

Although I'm not teaching my students anymore I am teaching the world about HD. This could not make me happier. I love nothing more than sharing my story with the world!
I would be no were without my readers so thank you, thank you, thank you!!


Alexandra