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

My fun filled weekend

 What a weekend I had!

 My mom had a cookie swap every year in Kansas for 9 years, and it eventually became they talk of our town and every one wanted to come because she is the most gracious host. She was 

having one here  in Boston with my auntie Carol and I know she deeply missed her friends in KS. I have always said that our friends in Kansas were our Kansas family. Two of our KS family members Heidi and Michelle had been planning to surprise my parents for my moms cookie swap.

 

I went with my Aunt to go get them and we all cried before they even surprised her! My Aunt went into the house and said she needed my moms help while we waited in the garage and my mom saw them, and sat down on the stairs and lost it, and we all cried. It means so much to us that they came, more than they know especially with everything going on with me, it took everything off my mind. My mom has always said those two have her heart, and she couldn't have been happier to see them.  

 

Friday night was the cookie swap and we had family and friends over, and it was a lot of fun and laughs! It really put me in the Christmas spirit!

Michelle took all the gorgeous pictures of the weekend!

On Saturday we took Michelle and Heidi to Boston, and walked, shopped and ate, at Quincy Market, the north end, and Back Bay. The city was decorated for Christmas and looked gorgeous!

On Sunday morning as always we had Sulmonte family breakfast and we had a lot of people! It was a great morning- my papa got out his guitar :) 

Then sadly it was time for Michelle and Heidi to leave and I had to get ready for my 

god sons Christening. 

 My cousin James and his wife Katie asked me to be their second child Baby James godmother. I'm beyond honored and happy to be his godmother!! I love him more than he knows!

All in all it was a perfect weekend, filled with many many perfect  moments!! :) :)

Merry Christmas,

Alexandra 

Fun filled Weekend :)

 What a weekend I had!

 My mom had a cookie swap every year in Kansas for 9 years, and it eventually became they talk of our town and every one wanted to come because she is the most gracious host. She was 

having one here  in Boston with my auntie Carol and I know she deeply missed her friends in KS. I have always said that our friends in Kansas were our Kansas family. Two of our KS family members Heidi and Michelle had been planning to surprise my parents for my moms cookie swap.

 

I went with my Aunt to go get them and we all cried before they even surprised her! My Aunt went into the house and said she needed my moms help while we waited in the garage and my mom saw them, and sat down on the stairs and lost it, and we all cried. It means so much to us that they came, more than they know especially with everything going on with me, it took everything off my mind. My mom has always said those two have her heart, and she couldn't have been happier to see them.  

 

Friday night was the cookie swap and we had family and friends over, and it was a lot of fun and laughs! It really put me in the Christmas spirit!

Michelle took all the gorgeous pictures of the weekend!

On Saturday we took Michelle and Heidi to Boston, and walked, shopped and ate, at Quincy Market, the north end, and Back Bay. The city was decorated for Christmas and looked gorgeous!

On Sunday morning as always we had Sulmonte family breakfast and we had a lot of people! It was a great morning- my papa got out his guitar :) 

Then sadly it was time for Michelle and Heidi to leave and I had to get ready for my 

god sons Christening. 

 My cousin James and his wife Katie asked me to be their second child Baby James godmother. I'm beyond honored and happy to be his godmother!! I love him more than he knows!

All in all it was a perfect weekend, filled with many many perfect  moments!! :) :)

Merry Christmas,

Alexandra 

health update

Good morning!!

I'm going to update every one today on my neasous and vommitting  syptomns. In my last post I had said that I had a CT scan of my stomach as well as a colonoscopy and an endoscopy- all of those tests came back normal. You can read about that here

Even after my 9 days streak of not keeping anything down, I would be still throwing up once a day every couple day, and then I had a 9 day streak where I kept everything down and thought I was in the clear. On Tuesday I threw up 7 times, so when I was still throwing up Wednesday my mom and  I went to urgent care because I was feeling worse due to being dehydrated. I got two bags of fluids, and two differentr neasous meds, neither of the neasous meds worked. I tried to drink two sips of water and threw it up, so urgent care sent me to the hospital. 

At the hospital I got two more bags of fluids, and two other neasous meds, and once again nothing worked so I was admitted to the hospital on Wednesday night.

So I spent my thanksgiving in the hospital but it could have been worse. I have my own room and I'm so grateful for my hard working doctors and nurses who missed out on being with their own familes to be here with me. And I had my parents, step sister and her boyfriend my auntie Carol, uncle Jim, Auntie Kathy, and my cousin all visit. I received many  really sweet texts, and FaceTimeed with my niece Francesca. I also really appreciate my mom being here most of the day even though it was Thanksgiving. I deeply missed my family but I'm trying to stay positive about the situation. My sister is in Chicago for Thanksgiving but she keeps checking in on me.

So yesterday I had an ultrasound test and an x ray to check for any blockage and both tests came back normal. Today I have another test to see where my food is going and I have a gall bladder test. What I am hoping is that it is my gallbladder and that it has to be removed. I know that may sound crazy but I have had these syptomns for two months, and want an answer.

When will I be home?? Well I can't go home until I keep food and liquids down and if  my gall bladder has to be removed even longer. I would rather be here than at home, the fluids help me feel better we finally found a neasous med that worked, and the nurses take care of me, and my GI specialist are doing their best to give me an answer. I have just been thinking and praying for an answer.

If you could keep me in your thoughts and prayer this week I would greatly appreciate it. Thanks for reading - it was great to get my feelings out

Alex