Hi my name is Alexandra, but my friends call me Alex. I'm honored to be here for a guest blog post. Jesse is an amazing author and an amazing person. Her book Bella Notte helped me get through one of my 1st chemo treatments. Now I know when I say the word chemo everyone automatically thinks I must have cancer. But thankfully I don't I have another disease called SLE Lupus. Lupus is an autoimmune disease that can affect the skin, your joints, your kidneys, and your other organs. I was diagnosed in March of 2011, I was only 19 years old. I was away at school my 1st year at college and I was having a lot of pain in my wrists. The doctors ran a bunch of tests and couldn't figure out what was wrong. It was a Thursday afternoon when I got a call from my doctor, is a call that I was relieved but also terrified to get.
The doctor told me that I had SLE Lupus and that's all she said. I knew a little bit about lupus but not a lot. Being away at school two a half hours away from my parents I felt like I was alone. I called my mom right away and told her what the doctor had said, she told me to relax and that it would all be okay.
It was hard for me to comprehend what I had just been told. My friends were really supportive but I wasn't ready to deal with it. For about a month I refused to talk about it and didn’t want to deal with it. Once I got past that I started doing better.
The first two medicines the doctors put me on made me violently ill so on the Saturday after thanksgiving I started having to give myself Methotrexate injections (low dose chemo) on a weekly basis.
Lupus has changed my life a lot but I haven’t let it stop me. I started dancing when I was 5 years old and figure skating at 10. Everyone said I should give them up but they are my 2 things that allow me to process and accept everything. I am still helping coach Special Olympics figure skating.
I am still coping with the fact that I have Lupus but I am not letting it define me! Now I have a few special treats for you all!
The doctor told me that I had SLE Lupus and that's all she said. I knew a little bit about lupus but not a lot. Being away at school two a half hours away from my parents I felt like I was alone. I called my mom right away and told her what the doctor had said, she told me to relax and that it would all be okay.
It was hard for me to comprehend what I had just been told. My friends were really supportive but I wasn't ready to deal with it. For about a month I refused to talk about it and didn’t want to deal with it. Once I got past that I started doing better.
The first two medicines the doctors put me on made me violently ill so on the Saturday after thanksgiving I started having to give myself Methotrexate injections (low dose chemo) on a weekly basis.
Lupus has changed my life a lot but I haven’t let it stop me. I started dancing when I was 5 years old and figure skating at 10. Everyone said I should give them up but they are my 2 things that allow me to process and accept everything. I am still helping coach Special Olympics figure skating.
I am still coping with the fact that I have Lupus but I am not letting it define me! Now I have a few special treats for you all!
The first is that I started writing a book a couple of months ago and here is the first chapter. Please remember that this is a rough draft. So enjoy!
Butterfly Kisses
Chapter 1:
It’s my first day at college, the first day of the rest of my life and the first day of freedom from my parents. That was all I could think about. Finally after 18 years of strict rules and curfews set by my parents, I could do anything I wanted. But that’s not the best part; the best part was Thomas, the guy down the hall.
After meeting during the boring mandatory orientation and finding out we would be living down the hall from each other, we exchanged numbers and had spent the summer texting back and forth. We were talking almost daily and found out we had a lot in common including our love of Harry Potter and Star Wars. I was starting to unpack when there was a knock at my door and I opened it to find Thomas standing their looking cuter than I remembered, his dark blue eyes partly hidden by his shaggy brown hair, just staring at me.
The next thing I knew he was wrapping me in a hug and telling me how happy he was to see me. All I could think about was how I fit perfectly in his big muscular arms. Being only 5 foot 5 he was easily a head taller than me at 6 foot. He let go and took a step back much to my disappointment but I kept a smile on my face. He looks around my room and gives me a sly smile and says, “Of course everything would be pink in here.”
I just smiled and said, “Wait, no there is a purple butterfly blanket right there!” He just lost it then and we both broke out in a fit of laughter.
Finally composing ourselves, well for the most part atleast and he casually asks, ”How was your summer Alexa?”
Not wanting to talk about how sick I had been over the summer I just shrugged and said, “It was fine.” As I was about to ask him about his my phone starts to ring and I know without even looking that it’s my little sister Elizabeth, no doubt wondering if I had seen Thomas yet, not wanting to be rude or ruin anything I just ignored it. I could just call her back later. “Sorry about that, little sisters. What can you do?” I said with a smile. “But anyways how was your summer Thomas?”
He sat there smiling and pretending he with thinking about something important then just casually said, “boring.” It was getting late, almost 1 am and we had to be at part two of freshman orientation so we both decided we should finish unpacking and get to bed.
At this point I was freaking out and stressing about everything so I decided I needed to dance and clear my mind. I had taken my first dance class when I was 3 and just never stopped. Classical ballet was my favorite when I got like this. So I pulled on my ballet shoes and turned on my iPod and started dancing. Immediately I felt the calm was over me. Since I was little dance had always been my escape, I would look forward to dance class and recitals because of the calm it brought to me. I needed my dance and my ballet or I would completely lose my mind.
It was almost 4 am when I finally finished unpacking and I was exhausted. I had yet to see my roommate but considering we had our own rooms and had never met so I wasn’t too surprised. I figured we would meet tomorrow. All I knew about her was that her name was McKenna and she was a freshman like me. We had talked a few times but nothing to big.
I’m lying in bed waiting to fall asleep, but I cant because there is too much going on in my head right now. I would never admit it out loud but I am scared. I am afraid about what the doctors are going to find, I am afraid of being away from home, and I am afraid that I wont get better. I finally drift off to sleep only to be awakened by my alarm 5 hours later. All I wanted to do was practice my ballet and relax but no I have to go to part two of freshman orientation.
It was already 10 AM and I am supposed to meet Thomas at 10:30 so we can walk over to the football field together. Luckily my hair was cooperating so I just pulled on my favorite denim mini skirt and a tank top and ran out of my room in search of something for breakfast. Walking out of my room I almost run into a girl who I am assuming is McKenna and we both screamed. “Please tell me you are Alexa, or I am going to scream!” She asked trying to calm down.
Immediately I said, “Yes, yes I am Alexa, please tell me you are McKenna or I am going to scream!”
“Yes, I’m McKenna! Its so nice to finally meet you Alexa!” she said as she pulled me into a hug. Wow, was all I could think, I had never met this girl before and all I could do was hope she wasn’t too crazy. After we a few minutes we both found something for breakfast and sat down at the table. We were just sitting there talking when there was a knock at the door.
If you have any questions or want to talk or are interested in reading more from “Butterfly Kisses” feel free to email me at: [email protected]
Butterfly Kisses
Chapter 1:
It’s my first day at college, the first day of the rest of my life and the first day of freedom from my parents. That was all I could think about. Finally after 18 years of strict rules and curfews set by my parents, I could do anything I wanted. But that’s not the best part; the best part was Thomas, the guy down the hall.
After meeting during the boring mandatory orientation and finding out we would be living down the hall from each other, we exchanged numbers and had spent the summer texting back and forth. We were talking almost daily and found out we had a lot in common including our love of Harry Potter and Star Wars. I was starting to unpack when there was a knock at my door and I opened it to find Thomas standing their looking cuter than I remembered, his dark blue eyes partly hidden by his shaggy brown hair, just staring at me.
The next thing I knew he was wrapping me in a hug and telling me how happy he was to see me. All I could think about was how I fit perfectly in his big muscular arms. Being only 5 foot 5 he was easily a head taller than me at 6 foot. He let go and took a step back much to my disappointment but I kept a smile on my face. He looks around my room and gives me a sly smile and says, “Of course everything would be pink in here.”
I just smiled and said, “Wait, no there is a purple butterfly blanket right there!” He just lost it then and we both broke out in a fit of laughter.
Finally composing ourselves, well for the most part atleast and he casually asks, ”How was your summer Alexa?”
Not wanting to talk about how sick I had been over the summer I just shrugged and said, “It was fine.” As I was about to ask him about his my phone starts to ring and I know without even looking that it’s my little sister Elizabeth, no doubt wondering if I had seen Thomas yet, not wanting to be rude or ruin anything I just ignored it. I could just call her back later. “Sorry about that, little sisters. What can you do?” I said with a smile. “But anyways how was your summer Thomas?”
He sat there smiling and pretending he with thinking about something important then just casually said, “boring.” It was getting late, almost 1 am and we had to be at part two of freshman orientation so we both decided we should finish unpacking and get to bed.
At this point I was freaking out and stressing about everything so I decided I needed to dance and clear my mind. I had taken my first dance class when I was 3 and just never stopped. Classical ballet was my favorite when I got like this. So I pulled on my ballet shoes and turned on my iPod and started dancing. Immediately I felt the calm was over me. Since I was little dance had always been my escape, I would look forward to dance class and recitals because of the calm it brought to me. I needed my dance and my ballet or I would completely lose my mind.
It was almost 4 am when I finally finished unpacking and I was exhausted. I had yet to see my roommate but considering we had our own rooms and had never met so I wasn’t too surprised. I figured we would meet tomorrow. All I knew about her was that her name was McKenna and she was a freshman like me. We had talked a few times but nothing to big.
I’m lying in bed waiting to fall asleep, but I cant because there is too much going on in my head right now. I would never admit it out loud but I am scared. I am afraid about what the doctors are going to find, I am afraid of being away from home, and I am afraid that I wont get better. I finally drift off to sleep only to be awakened by my alarm 5 hours later. All I wanted to do was practice my ballet and relax but no I have to go to part two of freshman orientation.
It was already 10 AM and I am supposed to meet Thomas at 10:30 so we can walk over to the football field together. Luckily my hair was cooperating so I just pulled on my favorite denim mini skirt and a tank top and ran out of my room in search of something for breakfast. Walking out of my room I almost run into a girl who I am assuming is McKenna and we both screamed. “Please tell me you are Alexa, or I am going to scream!” She asked trying to calm down.
Immediately I said, “Yes, yes I am Alexa, please tell me you are McKenna or I am going to scream!”
“Yes, I’m McKenna! Its so nice to finally meet you Alexa!” she said as she pulled me into a hug. Wow, was all I could think, I had never met this girl before and all I could do was hope she wasn’t too crazy. After we a few minutes we both found something for breakfast and sat down at the table. We were just sitting there talking when there was a knock at the door.
If you have any questions or want to talk or are interested in reading more from “Butterfly Kisses” feel free to email me at: [email protected]
In honor of Alex and the disease she is kicking in the butt! We have several things to giveaway! Since I'm lazy, and don't want to have to randomly pick a name, I'm going to attach a rafflecopter onto this post. US ONLY- sorry guys!
What you could win:
What you could win:
One of three bracelets. Lupus awareness, support Bella Notte or Bella Vita as you rock both their colors and Lupus awareness!
OR
OR
A signed paperback copy of Bella Notte.
Make sure to enter!
Make sure to enter!
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