Hard Days

So when I started my blog, I promised myself to share the good and the hard of my disease in order for it to be therapeutic for me and in order to raise awareness and be an advoacate.

Sometimes you have to take the good and the bad in life and with my HD and this week has been really hard for me. I'm dealing with hard realizations that most likely I am going to be alone in this journey. I have realized that I won't be able to get married and have a family as everyone around me is. That's a harsh reality for me a 24 year old to deal with becuase that's all I wanted in life and the HD is taking that from me.

Another hard thing for me to also deal with is that there are people who I believed would be beyond supportive to me have not been seeing me, or messaging me to see how I am. I feel as if some people deal by pushing me away when I need them to pull me in. I just feel extremely alone and lonely lately.

I do want to say there are people who are busy in their own lives but constantly making time for me and we are closer now that I am sick. I wanted to thank these people specifically- My entire Dads side, the Freniers,  my cousin Chelsie, my best friends Jenny and Emily, my Kansas family,  my sister friends, and of course my sister Elizabeth, her boyfriend Alex, my mom and Step dad Ken. I love all of you and appreciate what you do for me. You got me through this crazy winter!!

There are days when I feel so lonely here and deeply miss my friends that I say I wish I still lived in Kansas. I feel like all of my friends here have pulled away lately when I really need them. 

Let's just say I am feeling hurt by a lot of people in my life. I understand Its hard for them to see me but it's ten times harder for me to do this and fight this alone.  

I have had a lot of long talks with my mom  and sister about this lately and my mom said blog about It so I am so grateful I did. It got my thoughts and frustrations out.

Thanks for reading

-Alex

Stella and Dot

My mom and I started selling Stella and  dot. Stella and Dot sells 

Tjewelry, scarves, bags, and accessories. I'm in love with Stella and Dot so far- it's an amazing company and amazing product. I'm a S&D stylist! 

I'm having so much fun selling Stella and dot! I was going to my aunt and uncles office once a week but have still been bored not working. I was feeling restless and worthless and needed something to occupy my time. By being a stylist I'm really busy.. I feel as if I have a purpose again! It has been really great for me. 

Shop my jTrunk show until March 8th  and then shop my online boutique

Have styling questions? Or want to send me a picture of your out fit and let me pick the perfect accessory? email me

If you want to have an online or at home trunk show you can earn these rewards! 

Here are 8 amazing reasons to shop S&D 

Alexandra

Kindness of Others

I wanted to share some exciting news today!!

 

Our friend from Kansas, who I grew up with as my Kansas family, Kurt sent me an email last night saying him and Tony Ramey, the country music recording artist  he works with    wanted to get involved with this years HDSA Convention. Kurt is a very talented song writer and is passionate about music. Music is also very important to me and my journey.

Kurt had a few ideas for the convention. One of his ideas was to have a song he wrote a few years ago, 'Hearing my Song' be compiled in a video with pictures, quotes from my blog, and facts about HD. It would be a video of my trials and tribulations. We could play it at the convention.

The lyrics: 

I gotta be so selfish sure the way I play it even though nothing's really changed 
But I can't let them see the sweat, the tears, and the heartache so I'm learning how to hide the pain

Like a candle flame way out on the ocean it Burns so dim it's like it's not even there 

Can't wait to see their faces when I show them a light I always kept and hid

So excuse me if it seems like I'm lost in a dream. It feels so real so close It's all that I can see. I'm going to fake it until I make it and do every thing I can to stay strong and someday they will be hearing my song hearing my song


Well there's times I admit its hard not to get discouraged and sometimes the fight takes the fight right out of me.  But I know the scars I get along the journey they wil remind me ain't nothing In life Is free.


Someday just know that someday they wil be singing my song

 It's the perfect song for me. He really gets my struggle.   I have hope and faith that my awarness and advocacy  will lead to better treatments and a cure. I won't stop fighting untill everyone is singing my song. That last lyric is my favorite. If you would like to hear his song click the contact me button and send me an email  and I can email it to you.

Another idea of hisq would to write another song based on the new HDSA motto family is everything and have Tony perform it at the convention.

I am in love with this idea and the new motto because family really IS everything. Kurt proved that family isn't always blood it's the ones who support you through everything.

Kurt is in touch with the HDSA to receive permission to do his ideas, but even if he can't perform it or show the video, he's still going to write it for awareness. I think these are amazing ideas for awareness. 

This couldn't have come at a better time - I was beginning to 

wonder if people still love me despite HD,  if people knew how to deal with it, and if people knew how much I really struggle and fight. Kurts email demolished all of my negative thoughts becuase he truly comprehends it. My faith has been restored in my family and friends with one email. Thank you Kurt, Tony, and Marozas family. 

Family is everything,

Alexandra 

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