5.31.2014

Thank YOU for reading

Good morning readers

I had so many fears about starting a blog about my journey with Huntington's Disease. When my sister first suggested to me to blog about my first hard day and the day I blogged about the loss of being a mother, that was so hard because I was being so open, telling you truth about my fears. I thought, what will people think? Will people understand?? But what I learned was you were there for me offering words of encouragement and advice. And now thanks to all the love and support I have received for sharing my story, I realize our story matters.

Anyways, I just wanted to take some time out to thank YOU, the reader. Whether your my family, an old friend, my best friend, or from the instagram and blog community and I have never met you, I appreciate you. your emails, facebook messags, texts, comments, instragram comments, and views just melt my heart. When I receive something from a blog reader, it makes my day be a GREAT DAY!

I even had some people say, after reading your blog, I have researched about HD. If I can inspire and educate just ONE person, this is all worth it.

Thanks to you all I now that being brave and fearless - is SO worth it 

This blog has become my safe haven - a beautiful space to share my heart. I  couldn't do that without your encouragement. I believe God knew I needed this community of people behind me.

This morning I have happy tears, and its all because of YOU!

Never alone,
Alexandra 

5.28.2014

Final thoughts on my trip to KANSAS

Good Morning, readers!
Thanks for reading as I share my journey.

In case you missed the first and second post on my trips to Kansas, you can find them here and here .


Part Three:

Saturday night I stayed at Jenny and Taylor's apartment in KC and then on Sunday morning Jenny and I went and got coffee. It was gorgeous out, we walked to Starbucks. It was  the first time all weekend that it was just me and Jenny (we were with family and friends all weekend) so it was nice to just be with her for a little while.  I miss her already. 

Jenny drove me back to Olathe and my family went to the Loritz for Braden's  birthday. I was upstairs with my Haley girl while the boys did their thing. Have I told you how much I just love Haley? 
Finally, we said bye to the Loritz family and went to a cookout  at the Bellamy's with the Marozas family. 

Jenny was at the pool with two of her nieces that I hadn't seen so I walked with Hagan to the pool, and later our families came down. 
The park hill manor pool is where our friendships all started- it was nice to be there together again. It was where I first met Jenny.

When we had to say good bye, I didn't want to leave, I cried saying bye to every one. Our friends had been SO GOOD  to us, we couldn't be more thankful.


It was a beautiful end to a perfect weekend.


As always,

Thanks for reading,
Alexandra

5.26.2014

Kansas Part Two: HDSA Team HOPE walk

As many of you know, the whole reason we went to Kansas was to walk for a cure for HD. Right now there is no cure or great treatments for HD.

One of our family friends, Michelle donated her time and organized a Team Alexandra for the KC HDSA walk. I am ever grateful for her and the role she took in helping find a cure.


In the morning, it was raining and I was nervous that people wouldn't show up. BUT they all showed up with their umbrellas and were all just as committed as I am to raising awareness and a cure.


There was over 40 people on my team, and over 100 people at the  event. We raised over $10,000 for the HDSA (which crushed the goal of $5,000!)


I could not have been happier or more thankful for all the people that came out for me. It was one of those perfect days  where I just kept thinking over and over how lucky I was. Physically, I felt amazing; Emotionally and mentally I was on a high of happiness. I felt strong, and like a fighter. I felt like no matter what happens, I  have so many people who love me. Every one on my team proved that they weren't just, friends, they truly are my Kansas family. 


Walking with 40 people, I felt infinite, like I can do any thing. On Saturday I was reminded that miracles happen. 100 people show up in the rain and raised $10,000 for HD, that is a INCREDIBLE.

My sweet Haley girl held my hand the ENTIRE walk. She is my little support system - just melts my heart.

I don' t know how to thank all of you who walked and or donated to me. My words will NEVER give justice. Just know you all hold a very very special place in my heart.
 The Bellamy Family
 The Loritz Family
Ashley and Amanda
"Papa Ken" and Brock
Molsen Family - we missed you Trav!!

All of my friends who came :)
Marozas and Shields Family
 Me and My Haley
Team Alexandra


The Bain Family

After the walk I went out to lunch with the Bain Family, my second family, my Jenny's family. Jenny and I have best friends for 14 years s0 our families have become each other's families, it's just how it is. It was so great to see them this weekend as they have been such great supporters of me.

For dinner I went out with my Olathe South friends, and then we went to power and light. It was so AMAZING to have them at the walk with me and then spend their day with me. They really are my Olathe South family. We had a lot of laughs, and caught up with what was going on with each other. I needed  that friend time so badly, it was so great.

It was just an indescribably great day.


Trip to Kansas: Part One

I am so excited to share about a perfect weekend :)

This weekend I went to Kansas to see my friends and attend the HDSA team HOPE walk.


It was an absolutely beautiful and perfect weekend :) My symptom were non existent; it was amazing!! Perhaps it was because I was so happy and excited :)


I feel so happy and loved :)


I am going to blog in three parts: Friday, Saturday, and Sunday.

Part One: Friday


The second the plane wheels touched the ground I felt home. I was so anxious to see all my friends and family. I was happy and couldn't wait to get off the plane! 

We went to Spin Pizza with 25 of our family friends. Being there reminded me how great my parents friends are. They are truly the best friends!! As mentioned many times before, they are all like family to us, I love them all like family. It was a great night! It was so great to see every one and catch up.


We also invited my best friend, Jenny, and her family, so I got to see Jenny on Friday and squeeeze her! 

Also, I was also excited to see my Haley girl, and her family, the Loritz! They are such great friends to us! I have a special bond with Haley, I have been baby sitting her her whole life. She is just the sweetest to me and has my heart.  I missed her so much. 

Haley and I 

Haley wrote me the sweetest card, and gave me a wallet!
Me and Jenny can't get enough of  our Haley 

I also took a picture with all of the kids  I used to babysit, they are all taller than me now. I still can't get over how grown up they are :)
Drew and I - we missed a picture with his brother Cole 
Mason, Me, Hagan, and AJ - my original babies :)
 
Braden, Brock, and Haley with their baby sitters 
Her I am with my second parents, my Jenny's parents, Rick and Debi
Jenny has 5 nieces and nephews and they all claimed me as their Aunt. I love them all as if they were my own. Here is the oldest, our first little baby, Paige
Me and my best friend for 14 years Jenny. Thank you for spending your ENTIRE weekend with me. Your ring is  beautiful, and I am so proud of the person you are!!! Thanks for being my best friend since 6th grade.  I miss you already!
Haley and Ken
Michelle, Heidi, my mom, and Crystal -LOVE you all :)
Me with my moms friends
group pic -minus Loritz family

It was really a PERFECT night - thanks to everyone who came

Thanks for reading,
Alexandra







5.21.2014

HD Awarenes Month: heartbreak and how I heal it

This is something that is really hard for me to share about because I am so passionate about it. However, since I have received so much love and support since starting my blog, I am going to share my whole heart.

Ever since I can remember, I have wanted to be a mom,  I prayed about it every day. Motherhood is everything I thought I was and everything I wanted to be.


As soon as I was old enough  I began baby sitting and formed unbreakable bonds with each and every child. These children are still party of my life today. 


I have just always wanted my own kids. I am deeply passionate about being a mom

But then when I started showing HD signs so early, I was immediately heart broken; because of the loss of motherhood. Technically, this is my decision not to have kids. Just because someone has HD doesn't mean they are unable to have children. But for me, I have chosen not to.  I just instantly knew I loved kids too much and did not want to give my kids a sick mom. 


Now with all this heart ache, I could easily be moping in bed. But I believe that does no good. In fact, what has been healing my heart ache is my connection with my nieces and nephews. Their parents are the best cousins I could ask for and they know and understand my decision. To show just how much they love and support me they are always bringing their babies to see me or welcoming me over to their house. I love them for that


So even though I have decided that children is not in my future does not mean I can't be apart of other children's lives every day. That's why I get up each day and heal my heart by loving on my nieces And nephews. They light my face up, and make me laugh. I am smitten. 


I also keep believing in finding a cure for HD. I have faith and hope that someday this disease will be no more.  As most of you know, I (along with 40 of my closest friends and family) will be walking for a cure this SaturdayIf you would be wiling to Donate to the HDSA I would be ever grateful to you.


Thank you again to my amazing cousins for understanding my decision and sharing their babies with me!


As always thanks for following as I share my journey.

Alex 




5.20.2014

KANSAS BOUND

Hi Reader,

I am beyond thrilled to announce that on Friday I am going to my favorite fly over state, Kansas.

On Saturday I will be walking with 40 of my favorite people; my friends that became our Kansas family. I am forever grateful for each and every one of them. They are all as committed to helping find a cure for HD,  just like me. I am so thankful that they will be there in support of me. 

Special thanks to our family friend Michelle for organizing Team Alexandra.

There are so many people I want to see and places I want to visit. 
This weekend is going to be just what I need, I need to squeeze all of my Kansas family, I need to soak in all the goodness of that beautiful fly over state. It is going to be so good for me. 

My entire weekend is packed full of people and places that have my heart.

and so far YOU have raised $1415 for the HDSA!!!! I am so thankful for all of you who donated. There is still time to register and or donate!!! 


Team Alexandra


As always thanks for reading,

Alex



5.19.2014

HD Awareness Month: HD Community

Good morning readers,

I hope every one had a great weekend. It was the first warm weekend here and I really enjoyed it. 

On Sunday morning, I went and had coffee with Seth.  Seth is the President of the MA Chapter of the HDSA, and he is the Co-chair of the National Youth Alliance, at just 23. Seth has been incredibly helpful to my family, right when we needed him. He goes above and beyond his title.

About a month ago, my sister reached out to Seth and explained our situation. She kept telling me how genuine he was, and that he wanted to meet with me. (He coincidentally lives in Natick, MA)

About  a  week ago, I reached out to Seth, and he offered to meet me for coffee. I met with him, and it was so good for me. He is so easy to talk to and just completely understands what I am going through.  He is so positive and believes in a cure.

A few weeks ago, my sister sent me an email saying to fill out the NYA scholarship for the HDSA national convention in June. With Seth's help, Liz and I both completed the scholarship. So there is a good chance that Liz and I will both be going the convention!! I believe that the convention will be so good for me. I need that sense of community. 

Seth has also been helpful to my mom, connecting her with  other care takers.

I am ever grateful for Seth, and all that he has done for me and my family. We appreciate him more than he knows!!

If you could say a prayer, that Liz and I receive a scholarship I would be grateful 
Alex




5.17.2014

HD Awareness Month: really great days

Happy Saturday friends.

I am  so excited to be able to share about a really GREAT and beautiful weekend.


Today is one of those days were I was so grateful for so many little things. I think mentally and emotionally I needed a few good moments. 

Last night I went to my Auntie Carol's cottage, with my cousin James, his wife Katie, and my niece Francesca. This morning we hung out, and then headed to my cousin Colleen's daughter, Maya's birthday party, it was exactly what I needed.


I was able to see all of my little nieces and nephews, and love on them. I am beyond  smitten with them. I could watch them love on each other all day!! It was so great to see all my family. So great to be surrounded by so much love and support.

Today I was reminded that I am  a fighter, and that even if I am a little different, my family and those babies love me anyway :)

















never alone

Alexandra

5.15.2014

HD Awareness month - Impossibly hard day, and a thank YOU to the reader

Happy May! Thank you for following this month, as I share the hard and the real of my journey in order to raise awareness for HD Awareness month. 

If I am being perfectly honest, I would have to say that yesterday was an impossibly hard day.  Physically, emotionally, and mentally it was exhausting. It was the hardest day that I have had so far; my movements were out of control, I needed assistance walking, and could barely sit still. Just an  all around physically hard day - which never helps me emotionally and mentally.  

However, I have figured out that the culprit was waaaay too much caffeine. I had three coffees from 9 am to 11am. Today I have not had any caffeine and feel 10 times better today. So I am going to cut out caffeine, and  hopefully I can have more days like today, and less days like  yesterday. Yesterday was scary, today I feel strong again.


I had an impossibly hard day yesterday, and then received this message from an old friend, and was reminded why I share my heart, and journey, why I fight the fight.  If I can inspire just ONE person, this blog is worth it. 


"I know we haven't talked in AGES and if my post made you uncomfortable I will definitely remove it-- I just haven't found the words to say to you to show my appreciation for sharing your story and bravery. I literally look for your post every day and look forward to hearing your positive attitude to brighten my day. You've impacted me more than you will ever know"

 
I have received so many messages similar to this. This blog is my happy place. My new favorite thing to do is blog - to share my heart with all of you. All of the views, emails, texts, facebook posts, and comments I have received melt my heart. I get through those impossibly hard days, with your help. I have hit 10,000 views in just a few weeks, and its alll because of  YOU. I have also  raised $1,335 for the HDSA. 

If you haven't yet, and would like to donate click here


Thank you, thank you, thank you,

Never alone,
Alex



5.10.2014

HD Awareness Month: My current feelings

Happy may!!



I am so grateful  you are here as I share my heart and journey.


May is HDSA Awareness month!!  My doctor,  Dr. Frank, is being featured on the HDSA website for Voices of HD. I would love for you to listen
In case you missed my previous post:


Sharing about the hard of any thing is hard for me, let alone sharing about the real and the hard of HD.

It has always just been my nature to be a happy and positive person and to see the good in life. In order to raise awareness of this awful disease I have to share ALL of my journey, whether it is good or bad. If I have HOPE that there will be a cure I have to learn  to how to share about the REAL.

Physically I feel like it is progressing so fast. I feel so YOUNG. I am 23 and  people don't  usually start showing signs until they are 30-50. I had to stop working due to my HD. To see how hard that choice was for me, go here

Some times I just feel like I am missing out on so many things because it is hitting me so hard and so early. One of those things is being a mom. I shared a little about that here. I feel like I am missing out on being young with my friends. 

When I think about my future I don't imagine getting married and having a load of babies as I ALWAYS  thought I would. I see this disease progressing, which is SCARY.

Right now my symptons include body movements, trouble walking, off balance (I fell down the stairs and broke my ankle)

Mentally and emotionally I feel STRONG except for a little bit of anxiety, and for that I am ever grateful because MANY people with HD, struggle with depression. I feel like a fighter; like a riser. 

I am being real and honest when I say that overall I am truly happy. Yes I have my days where I am  emotional but overall I can say that I am happy.

A big part  of my happiness I owe to my support system. Yes I am not working but very rarely am I sitting at home by myself. I have my sister-in-law Katie and Francesca, my sisters, my cousin Melissa and my niece and nephew, my cousin Chelsie, my mom and Auntie Carol. They are bringing me coffee, and visitng, having me over, inviting me for lunch, dinner, and shopping.  I wanted to thank those people specificially for taking such  good care of me. I honestly can't thank them enough for my happiness. 

Right now there is no cure and no great treatments out there. This disease is progressive, and it is going to get MUCH worse than it currently is. On May 24th I am going to be walking for a cure in KC. I would love if you would consider  donate to me. I pray for a cure every day and I have hope that miracles will happen but I can't do it alone. I need YOUR help. You can help by clicking HERE to register and/ or donate to a cure. 

To those of you  who have already registered, and/or donated, I can't thank you enough!!

I have happy tears a lot knowing that I am never alone. 

As always thank you for reading and being a part of my journey. I could NOT do it alone.

Alexandra 


5.06.2014

HD Awareness Month: Why I have the best team of doctors

Good morning readers!!

May is HDSA Huntington's Disease Awareness Month and I am going to be sharing about my journey all month long in order to help raise awareness and donate to a cure

I have had two guest bloggers bravely share their stories. In case you missed those:
Lisa's story
Chastity's Story
My Story

Yesterday morning I went to my cousin Melissa's house to see her and my niece and nephews. I knew I had an important doctors apt later and I needed to talk to her about it but also I needed to laugh and smile to get my mind off things for a little. Luckily, I was able to do a little of both :). I was able to talk to Melissa about HD- my fears and worries. She always gives THE best advice. I know she is so busy right now being a working mom but she is she is still always willing to talk to me. She also offered to come to the support group and I love her for that. 

I am also going to be sharing about why God blessed me with the best team of doctors and genetic counselor:
-They are compassionate, they listen and truly care about me as a patient AND as a person.
-They act like they have all the time in the world for me;  I never feel rushed.
-They are constantly reminding me of all my choices and never forcing me to decide one way or another. 
-They have the best interest of the patient at heart. For example, yesterday I asked Dr. Frank about a clinical trial he is currently working on and he let me know all about it. He also gave me advice on the best choice for me. I loved that he never PUSHED the trial on me, even though it is his trial, that meant everything to me.
-They make me feel special and admirable. They constantly remind me of how far I came since my first appointment in December. I was so emotional I could not even talk, to my last appointment when I said I  was ready to kick HD in the butt! I got there with them. They make me feel like a fighter, and that we can conquer anything together.
-They SUPPORT me as a person and genuinely get excited with me as good thing in my life happen. For example, this blog- I know they are  reading this post ;)

Thank you for reading, I wouldn't be here without you.

Alex

5.05.2014

HD Awareness Month: Lisa's story

Hi readers,
Thank you so much for following my journey as I share my struggle Huntington's Disease.
This what started out as a little blog, has now raised SO much awareness and donating for a cure.
I am smitten with the emails, the comments, and the views I have received, and blog world. My blog has become a safe place for me to share my heart  and story with the world. I am so grateful for YOU, and your encouragement.

I have made some new friends in the blog world, and one of them is Lisa. Lisa is also part of the HD community, and I am so grateful that we found each other. She understands my story. Lisa has been brave and willing to share her story with you, in order to raise awareness of Huntington's Disease.


Here is Lisa's story:

I really want to get more involved with Huntington’s and promoting awareness. I think for so long I have tried to ignore it. Mostly because people don’t understand how it works. No matter what I tell them. They always say things like don’t worry you probably won’t get it. Not knowing that everyday it’s on my mind. Every time my leg twitches or I mispronounce a word or do anything clumsy! It is a scary feeling knowing that there’s no cure just deterioration.
My story is rather long and not too exciting, but I am going to type away. I don’t remember much from my childhood before age 9. A therapist told me it may be a mental block to cover up my pain. I dont know.  My parents had me in ca and divorced when I was two. At that time my mother took me and moved back to Pa. Where all of her family lives. She did drugs before me and after I was born.  Mostly marijuana and speed.   I remember most days I played alone while she slept all day. When she was around she always had these weird jerks and motions (HD symptom). At the time everyone would say it’s because your mom does drugs. I never actually saw her do them, but everyone put the image in my head. So I lived with her until about 7. Then my aunts started taking me on weekends and more frequently. My mom was becoming "sick" and no one knew why. Again, blaming drugs.
So my aunts told me I would need to live with them. I would see my mom occasionally, but no one ever really explained what was wrong with her. After hearing that drugs did this I began to resent her. I would visit her from time to time in a hospital. At some point she contacted my father in ca and told him she was sick and to get me, that my aunts had been raising me. (Mind you he hasn’t seen me once since I was two). My dad immediately goes to court and gets custody of me and within a month I live with my dad.
I hated living with my dad. I was 9 and had no connection to him. He had a wife and three kids.  Imagine adjusting to that…My aunts and my mom were 3000 miles away. I cried every night that I wanted to go home, but it wasn’t happening.  I stayed in contact with my aunts and they would try to talk to me about my mom, but I didn’t want to know. I was so mad I had to be in California and felt like if she hadn’t done drugs, she wouldn’t be sick and id be with her.
It was around high school (1997) that my aunts started really trying to talk to me about my mom. Telling me she’s getting sicker and I need to see her.  They also taught me about Huntington’s and how I was at risk.  I didn’t want to hear it. I was 17-18 and thought I knew everything. After I graduated high school I moved to Washington with my boyfriend.
In the summer of 1998. My aunts called me to update me about my mom. I knew she had Huntington’s disease, but still didn’t want to talk much about it. I guess I was scared and hurt. They told me my mom was getting really thin and has a hard time swallowing and she jerks a lot. I remember my cousin telling me she saw my mom and the hospital and that she kept saying Lisa. It broke everyone’s heart to see her this way.  I said I would get out there soon.
Soon wasn’t soon enough!!  On September 20th I came home from work to a full voice mail. My aunt was calling and it was really important that I call her back. She left like 3 messages. I knew something wasn’t right. I called her in PA that night after listening to the messages. She told me my mom passed away the night before. I threw the phone. I was so UPSET. I think my mom had choked In her sleep and eventually went into cardiac arrest.
I went to my mom’s funeral which was open casket so I could see what she looked like. I sat with her after everyone was done saying their part and I just cried and stared at her. So many thoughts in my head.  Why her??  Why didn’t I get to say goodbye?
A couple years passed and I decided to learn more about the disease. I educated myself enough to decide whether or not I want to be tested.  I have also learned that it wasn’t drugs my mom was sick from, it was this stupid disease. :( I wish I would’ve listened and visited her. I hate myself for being mad, when it wasn’t her fault.
So many people have said that if my mom hadn’t done the drugs she did the HD may not have kicked in so early. Regardless it was her time to be in heaven.  It just hurts that I don’t have my mom.
My mind often wonders which one of my grandparents had HD to pass it on to my mom. Sometimes I think it’s a misdiagnosis. Today I am at a point in my life where I realize life is too short and I may start having symptoms. I want to live my life to the fullest and educate anyone I can. I also want to raise money, so maybe one day there will be a cure. I have a beautiful son and he is my everything.  I need to show him how great life is, while we are here together.
Please join us for the walk or the 5k run.  If you can donate it would be appreciated more then you know!  We need to find a cure!!
Thanks for listening.  lisa


As always, thank you for reading,
Alex