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 

Imperfect

One thing that my HD journey has taught me is that people will love you even if you aren't perfect. They will still love me imperfections and all. They knew and loved me before the HD which means they will still love me despite my HD. It was a long road to get there. In the beginning of my diagnosis, I struggled with feeling different than every one around me and I felt embarrassed.  

Now I realize that no one is the same, and everyone must feel different at some point. I am no longer embarrassed, and feel more confident in myself each day. I have realized that people love me before HD and people still love me after. I have learned to embrace my imperfections. 

I am encouraging you to embrace your imperfections. What is some thing you feel different about- embrace it!!

As always thanks for reading- this space is my safe haven,

Alexandra 

Fiercely miss my fly over state, Kansas, but am right where I need to b

I have been deeply missing my friends and Kansas lately. I have been listening to old songs and looking at old pictures that remind me of so many great memories in Kansas. I feel blessed to have loved Kansas so much that I fiercely miss it. I miss my favorite country road and country music up windows down kinda days. I miss OS, KU, and Kappa Delta. I miss arbor creek pool days and my house. I miss everything about my friends that I consider family. I miss Royals tailgates and everything about a Kansas summer.

 But with everything going on with my HD, at the end of the day I need all my family-at the end of the day I am right where I need to be. I miss Kansas but Boston has my family and my heart-It's my home :) 

If I was not here I would not have my beach and cottage days. I would  not have this beautiful Fall in New England or the opportunity to reconnect with my Dads family. I especially would not have my family, who are my support system, my everything,  my best friends. 

So I will alway always miss Kansas but Boston is my home. 

Today I am going to my cousin Melissa's to spend time with her and my niece and nephews one thing I could not do if I lived in Kansas.

Thanks for reading,

Alexandra 

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 

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 

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 

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

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