Thanksgiving thankfulness

I am I Hi readers,

HAPPY THANKSGIVING!!

I am so excited for turkey day tomorrow and my family and all  coming to my grandparents! We start early for for 

For

in my family and people show up around ten and we have antipasto!! Then around 2 we eat our turkey dinner and everyone hangs out for awhile and we have desert! My family is big, loud, funny and very Italian! We always have a great time together! 

I just wanted to take time to create a list of people and things that I am grateful for to remind myself that there are great things in my life despite the hard of my HD.

I am thankful for my family( mom and dads side) my friends and family friends that are my Kansas family, my sweet  Lilly love dog and her kisses when she know I  need them, volunteering at a local children's museum, Music especially country music, my decaf iced coffee, the sun and these beautiful and warm fall days, beach and cottage days, boat rides

, and having my sister live so close that we can have sister days, and last but not least my million babies that I am surrounded with every day!! 

The What are you thankful for?!

I am also thankful for Avon and

Stella and dot helping me financially so thanks to those of you who have 

ordered from me! I would be grateful for you to support me this Holiday season by shopping Avon and Stella And dot!

Www.youravon.com/maryandalex 

Www.stelladot.com/maryandalex 

Happy thanksgiving,

Alex

I could have missed the pain but I would have missed the dance

Hi readers,

I know that it has been awhile since I took the time to sit down and get my feelings out but I have been seeing a counselor every other week for a few months and she is as amazing as my Neurologist and my genetic counselor. Talking to her has been really beneficial but I have really missed blogging so from now on I will do both! 

I have been falling hard for fall and all these beautiful days and trying to spend my time outside with my family.

My mom and sister worked their magic and got me a volunteer position at a local children's museum and everyone there was very sweet and understanding of me. I volunteered there for the first time on Thursday and I had a blast and time flew by. I am now going to look forward to Thursdays!!

For as long as I can remember I have been in love with music, especially country music. I could listen to music 24/7. My best friend Jenny and I believed that music up, windows down, on those gorgeous Kansas back roads could solve any problem and it always did. If one of us was feeling down the other would suggest a drive listening to music. The Voice and Nashville are my favorite shows because of my love of music. I have been to many concerts, but only cried at one, and that was Garth Brooks in Kansas. Anytime anyone would ask Liz and I why we never wanted to be tested we would say listen to "The Dance" by Garth Brooks, "Our lives are better left in chance" So when I heard him sing it live I lost it. In "The Dance"  video Garth says people believe it's a song about love, but to him it's about life and the loss of it

"But if I had only known how the king would fall, whose to say I would have changed at all and now I Am glad I didn't know the way it all would end,  the way it all would end, our lives are better left in  chance, I  could have missed the pain,  but I would have had to Miss the dance" those lyrics explains my dad dying and me having a beautiful 23 years without HD and I would not change those years for the world if I had would have known. I pray and have faith in miracles that I will continue to be able to live more beautiful years and that this is a bump in the road that will make me stronger.

Thanks for reading and I PROMISE to get in a better blog routine because I do enjoy and love blogging,

Alex 

 

Hope Hope Hope

The last time I saw Dr. Frank, my neurologist and HD Speciaist,  he said to me how long have you been coming to see me and I said a year and a half, and he told me that my HD was progressing very little since he first started seeing me. To say that made me feel amazing and happy is an understatement. I feel as if my disease is progressing slowly and there is so many things I am able to do.

This gives me so much hope for the research of treatments. After the convention my family and I have so much hope in a treatment that will stop the progression and restore what it has done to my brain in just a few years. I pray everyday for this and am witnessing a miracle. 

I have been letting myself believe that I will be what I was meant to be a mother, wife and a teacher. I'm letting myself think about baby names again. 

In the famous words of my sister at 28 I will be healthy, married and pregnant and 

look back on this journey as something that made me stronger.

I am going to continue to hope hope and hope some more. 

 

True Friends

I've realized as I grow up and get deeper into my HD journey, hard times reveal true friends. I have also realized that it's more important to have a few close true friends than a lot of fake friends.

I can't be worried about the people who can't understand my disease and be my friend and support me, I have to be able to let them go, no matter how hard it is and how much it hurts me.

I have the best and most supportive, truest friends who are willing to understand my disease, and still love me for me. The only hard thing is these people live in Kansas and I live in Boston but they are finagling a trip to come visit me in Labor Day and I will always love them for that.

My sister also reminded me that my family, my mom and sister and my extended family are my best friends and that's all I need here. I'm done fighting for more when I'm the only one fighting.  

To my truest friends from Kansas and to my family, you have my heart for all you do for me.

Huntingtons Disease Awareness Month: Family is Everything

May is HD awareness month! 💙

The HDSA motto is family is everything because HD is a genetic disorder that affects families. In my family  8 out of 11 of my Dads siblings have the HD gene that their father also had.  Many cousins either have the gene, or are at risk. HD has put a huge weight on my family's shoulders. Even the ones who don't have the gene are affected when they have had to watch their father suffer and now siblings. We would not make it with out each other to lean on the hard days and to us family is everything.

My Grandma, the mother of eight kids with Huntingtons Disease, had a huge burden to handle, and she did it all with grace and faith. At least twice a week she was driving someo one into Boston for HD research, driving to Tewsbury to visit them in the HD Unit. As hard as it has been for my mom and Liz since I have also been diagnosed they can't fathom doing it eight times over. My family was recognized by the HDSA as family of the year and my Grandma was very deserving of that award. My Grandma has passed but her legacy lives on in my Aunt Mary. My Aunt is everyones advocate, she comes andgets me once a week, and my cousins visit. She tells me stories about our family, and we talk about HD research and our hope and faith for a cure. She keeps my faith alive, keeps me smiling, and I could cry thinking about what she means to me. My Aunt and Grandma are without a doubt HD saints.

 I would not have gotten through my diagnosis without my mom and sister.My sister has moved her whole life here from Chicago, and she has taken every Friday off of work in the summer to spend time with me. My mom reminds us to keep smiling even when it's hard and pray everyday for a cure. They both have my heart, are my best friends and I am happy when I am with them.

I have been raised to believe family comes first and family is everything and I without a doubt believe in it. When I was beginning to show signs of HD my mom moved us from our home of 15 year Kansas to Boston to be with her family, have them there to support us because family is everything to her, and we needed them to get through it.

As you can see to me family is without a doubt my everything.

If your a blog reader who has been touched by my story and your not sure what you can do.

1.Email me I would love love to hear from you

2. Tell my story to someone and help raise awareness 

3. Donate to the HDSA

 I have been smitten with sharing my journey in order to raise awareness for HD!

Thanks for reading,

Alex

Stella and Dot Mothers Day Gifts 🎀👜😍♥️👛

Stella and Dot items can make the best gifts, especially Mothers Day Gifts! Choosing S&D as a gift is thoughtful and heartfelt.  ♥️

Here are some great gift ideas!!

Shop the Unique Boutique for a personalized gift! One great gift idea is to engrave the date of  the anniversary, and then add the birthstone or initial charm of kids and grandkids. Another idea is to engrave the initials of your mom and add memorable charms. There are many charms and engraveables to choose from so be creative!

 Another idea is the Capri Tunic  for Moms and Daughters ages 6-12. It is one size fits all!! Capri Tunic is a great beach cover up! 😎 $89 for Women and $59 for little girls!

Two more great ideas are the Love and Hope necklace each $39

!

An amazing gift idea is the Getaway Bag and my personal favorite bag! It has a zip out for extra storage!! 😍♥️👜 Getaway Bag is $138!!

last but not least there is the Keep it the bag. It's the diaper bag and comes with a changing pad!

It's on sale for $98!

My Stella and Dot Link is on the right side of my blog!! Check out the Mothers Day boutique for more  ideas!Place orders by 5/4 for them to arrive by mothers Day! Please contact me with questions- maryandalexiewels@gmail.com

Alexandra 

Dance for a Cure

Today's post is more positive than my previous post- I just had to get all  my feelings out on my hard winter and now I am back to posting positve and happier post.

My friend Seth, the NYA Presidnent had organized a fundraiser for the HDSA called Dance for a Cure. I attended the dance along with my sister, her boyfriend, my mom. Stepdad, Aunt, Uncle, cousin, his 

wife, and  most of my dads family. Thank you all for coming and supporting me! It was a really amazing event. 

The turnout was outstanding for the first year having the event, and they had over 100 people there!! Events such as these were there are that many people out fighting to raise awareness and money for a cure keeps  my hope and faith in a cure alive. My whole reason for doing what I do, having my blog and sharing it with the world is in hopes of a cure. The fight in my friends in the HD community, such as Seth remind me to hold on. I believe in making the impossible possible and in miracles.

Seth had been planing his event to raise money for a cure of HD for his mother, she sadly lost her Huntington's Disease battle the week before his event. This made it that much more emotional for Seth and my thoughts and heart were with him the entire night. I just wanted him to know how beyond proud and impressed of him everyone I was with was because of how young he is an amazing event it was. I knew the first time I met him he was special and committed to his cause- finding a cure for HD. He won't stop fighting until there is a cure and neither will I!

💙Help for today and hope for tomorrow 💙

Alex

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