10.30.2014

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 


10.17.2014

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 


10.14.2014

Be Brave

Hi readers,


Today I am encouraging you to be brave and fearless. When I first started my blog I had so many fears-I had to be brave, and jump anyway depsite my fears. I had always always wanted to have a blog, but it took the push from my sister to jump into it bravely and fearlessly.What is something that you have always wanted to do but haven't? I'm encouraging you, pushing you, and motivating you to jump bravely and fearlesly.


 It has been hard to share my journey, the good and the bad, of having Huntintgtons Disease with all of  you, but the feedback that I have received is worth the struggle. Do the hard thing, fight through the struggle- the outcome is so worth it, oh so good.


When I was considering doing the Boston Globe article I had a lot of anxiety and fears but once I committed to my decision to share my story with the world, I was estatic. My story was in the top ten most viewed the day it was released, and 111 people liked the link on the Boston Globes facebook page. The amount of awareness I raised was worth all those fears and anxieties.

My point is that in all of these situations I had fears and anxieties, and jumped anyways. You can do the same. It doesn't have to be  sharing your story of an abnormal disease, it just has to be something you want to do but have not because your fearfull.
 
Do something brave and fearless today- I can promise you the outcome is oh so worth the struggle. Do something hard, and jump!

Alexandra 


10.13.2014

Florida Vacation

For the past 10 days, I was in Clearwater Beach, Florida. It's my home away from home. My parents, grandparents, aunts and uncles all have condos there! We have been going there twice a year for many years! It is my favorite place in the world to visit!

We had gorgeous and hot hot weather! There was a lot of beach days, lunches and dinners out, live music, happy hours, and sunsets- all of myf favorite favorite things!

There were many perfect and peaceful moments while I was on vacation- I feel as though I am really soaking in the good moments more and more lately!

I do want to point out how grateful that my family is able to go on vacation in Florida as much as we do-I know just how blessed I am, and am very thankful and appreciative.

It was a perfect 10 days- that vitamin D replenished my soul :)

As always thanks for reading,
Alex




10.03.2014

Deeply miss Summer but can't deny that Fall is gorgoeus

Hełlo readers,

I had an amazing weekend enjoying everything Fall had to offer. I fiercely miss Summer, and beach, pool, and cottage days  but this Fall has been just as amazinng. I love that the trees are changing colors!

On Saturday I went apple picking with my mom, stepdad, sister Liz, and her boyfriend Alex. It was a hot but beautiful day! We were climbing on each other to get apples! We had such a great time!


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That night I stayed the night at Lizs and we went shopping and then went back to her place and some Prosecco from a vineyard that they went to in Italy called Villa Sandi - it was absolutely delicious!

My sister lives in the most adorable and quaint neighborhood in Boston. In the morning we walked to an adorable cafe to get coffee called Cafe Madeleine . At that point in the day it wasn't hot or cold - it was one of those perfect and peaceful times when everything felt right. That the HD doesn't scare me- it just is what it is.

That day my mom decided to come to Boston. So we all went to the Sowa Vintage and Antique market. We also ate at a food truck called Bon Me and it was SO good!! The Sowa market was amazing!! I have a new obsession with vintage and antique! 

All in all a perfect perfect Fall weekend.  Fall, I think I'm starting to like you.

I also have some exciting news- I leave today to go Clearwater, Florida for 10 days! I am beyond estatic.If my blog posts are few and far between in the next week that is why!!

I love love love blogging and sharing my heart. It has become my therapy- besides seeing Lauren, my genetic counselor every couples months, I do not see a counselor. When I take the time to write it gets all my emotions, feelings, fear, and frustrations out. It's an additional blessing that I receive words of encouragement in all forms from all of you. Your feedback on my writing is also my therapy- it's what gets me by! I will never be able to thank all of you properly.

Alex 



10.02.2014

A HUGE thank you for all the love from the Boston Globe South article

I am humbled to say the least.

When I first started my blog, I had all these fears about who will want to read my blog? Who will care enough? 

Well I can for sure say that people are coming out of the wood works to care about my blog. I have a huge amount of people- family, friends and people I don't even know care enough to help me raise awareness, and donate to Huntigntons Disease.
I can never thank these people enough!


I had the same fears when  Christie approached me about the article. What will people in Abington think? Abington is a very small close knit town and I was nervous. Who will want to read about me and my disease? But my faith in humanity has been restored becuase people truly do care.

I never once in my lifetime thought I would have an article about me.I am normal person, I have lived a normal life, but have an abnormal disease at a very young age for HD. So  I have decided to tell my story to the world, with support of my family. I  consider myself to be an advoacate for Huntingtons Disease -thanks to all of you who decided to join me!!

My words will never be enough but I wanted to take time out to thanks you for being my support system, caring for me, lovng me,donating, and helping raise awareness,

Alexandra