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Thursday, October 30, 2014

Weak Immune System

good  morning readers,

I have not been feeling too great.

About a month ago, I had the stomach bug for 5 days, and went to urgent care got fluids. Then a week later I had the same syptomns for 3 days. Then two weeks ago I had a burning pain in my stomach, waking me up at night it was awful. I went to urgent care, and they sent me in for a CT scan. 
The scan was normal.

A week ago Wednesday, the burning pain turned into neasous and vommitng. Ever since then I have barely kept any thing down, feel achy, weak and tired. On Friday, I went to urgent care and got fluids. I was told that if I had not kept any thing down  by the next day, to go the hospital. So on Saturday I went to the hospital from 8-1 and got fluids and  blood work. I was told it was viral. On Monday I was still throwing up so I went to my primary care, who didn't know what was going on so she sent me back to the GI. The gastroenologist believes it's viral but wants to do two procedures to make sure it's not some thing else. So on Tuesday I have to be sedated for a colonoscopy and endoscopy. 


So currently I am on day 8 of a stomach bug. Some days I am stay more positive than others. It's hard because I am used to go,go, going, and have been trapped In the house.

I don't know if I have a weak immune system and keep getting sick because of my HD, or if there is something else going on here. I'm more than ready for answers, ready to know. I am a little nervous about having the two procedures done but want to get them over with. I don't know what answer I want- don't want it to be viral because that means I have a weak immune system, but don't want some thing else to be wrong that  I have to deal with.

And there are many things that I have been looking forward to the next few days. I was planning on visiting my old school tomorrow for Halloween and seeing my old students and co- workers. Another thing I had been looking forward to for months is HDSA Education day, which is a mini convention in Boston. Then that night my cousin Chel and I were dog sitting at my sisters, and going out in Boston.

If your thoughts and prayers could be with me that I feel better tomorrow and Saturday I would greatly appreciate that.

I know today's post wasn't very positive but I had to get my frustrations out. thanks for baring with me!

As always thanks for reading,
Alex 

Sunday, October 26, 2014

I get my strength from my Dad


I have to say that even though my dad lost his journey with HD almost 12 years ago, because of my HD I feel closer to him more than ever. I get my courage, my strength, my fight all from my Dad.

As I get more into my fight with HD, I realize just how many hard things he went through because of his HD, and I'm beyond proud of the person he was despite HD.

He was passionate about two things; football and being a Dad to my sister and I. He attended every sporting event of my sister and  mine. His room at the hospital HD unit was filled with pictures of us. I hear now that we were celebrities to all the staff.

My first memory of Tom Brady was from my dad telling me about him, the rookie that was replacing Drew Bledsoes position. To this day I still have a deep deep love for Tom Brady and can always feel as if my Dad is in the room with me watching the Patriots. 



One of my greatest passions is trying to make my Dad proud of me. 

Dad- I deeply miss you but know your at peace and no longer fighting HD. I love you and can only hope your proud!!


Love,
Alexandra 

Wednesday, October 22, 2014

HD update



  Hi Readers,

 I have  quite a few things to update you on involving my HD. 

On Saturday I went to my cousin on my dads side, Kerry sons third birthday. My cousin Pat did the HD pie In the face challenge in order to raise awareness and donations for research for better   treatments and a cure. He did this for his 8 aunts and uncles, and cousins who have the HD gene. Patrick then nominated his mother and her two sisters, and his mother, my aunt Mary nominated her 13 grandchildren. At the party, all 13 kids did the challenge.  The kids lined up from oldest to youngest,and Pat said a great speech, and then got the oldest grandchild in the face with a pie. One by one the kids got each other- It was the most adorable and funny moment. I was so grateful to be there because it made me truly believe in more treatment and a cure. My heart was full and I was happy. Right before they all did it, and as they were all lined up with their team hope shirts on, my cousin Kerry said what where's Alexandra and hugged me- it was so sweet. I just adored seeing it. 

My Aunt Mary, is an HD saint as my mom,Liz and I have called her. It's true- she is gene negative, and her father, 8 sibilings, including my dad, her nieces and nephews, are all gene positive. Mary is a true advocate for all of them and me. She picks me up at least once a week and spends time with me, and is always going to visit her siblings. She refuses to give up until there is a cure. She is also an amazing mother because she has raised all of her kids to be advocates and compassionate. All of her kids, my cousins are doing the same thing for me. I  can't thank them enough for al they have done for me. My HD has brought us closer and I would NOT change a thing!! Thank you thank you thank you!


On Sunday I had my first HD youth support group. It was an amazing experience to be surrounded by other youth who simply get you, and your story with out having to go explain. I truly can't wait for our next session. Some others to add to my HD family. I am very grateful :)


On Monday I went and saw my neuro Dr. Frank and my genetic couselor Lauren. I just adore both of them more than they know. I always always feel better after our meeting.  I feel infinite like together we can accomplish any thing- especially kicking HD in the but! I had a few issues I wanted to discuss  him; my movements getting worse, my speech-  I can tend to slurr my words, and my swallowing. He had answers for all my issues, he suggested a new medicine for the movements, and to see a speech therapist for my speech and swallowing.


It was a HD packed few days, and I loved nothing more. All of these things  are key factors in my HD journey, staying happy despite HD, raising awareness, and finding a cure.

Help for today, and hope for tomorrow 
Alexandra  

Friday, October 17, 2014

Exercise and Huntingtons Disease

Happy Friday!


I deeply and truly believe that excercise has been a huge factor in my happiness. I have been walking  30 minutes daily. Some days I walk with my mom, or my cousin Melissa and her kids,  or my cousins wife Katie and her babies. I try to walk everyday because I know just how good it is for me physically, mentally, and emotionally. There have been studies done that say a person with HD should excercise 30 minutes a day. It always lifts my spirits because it gets me outside in the fresh air. I also bought some cute new workout clothes, and my sister bought me new tennis shoes, and three new workout outfits -I can't get enough of them. :)

I have had some good chats with my mom, Katie, and Melissa when I walk with them and it makes the time go faster :) 

I am so grateful to have found something else that helps my HD.


Thanks for reading as I share my story.
Alex