A.S. Face 1602: Cynara Leigh-Ciraulo

My name is Cynara and I have AS.
I was diagnosed 3 years and in that time it rapidly became a sever case. I have it in all my joints (read as in not all fingers but some and so on). I turn 29 on the 8th
I live between Palmer MA and Fort Knox KY. Unfortunately because of this disease I have to be separated from my husband to receive proper care and treatment. My doctors are all at the Lahey Clinic in Burlington MA. My husband is a soldier so we have to do what is best for my health even if it is hard.
I test negative for autoimmune and I do not carry the gene for it. The only reason it was found was because my doctor is amazing and really listens to me, never gave up to me, and most importantly he believed 25 year old me was telling the truth! We were reviewing my symptoms for the 109th time and I said a new one, it only happened when I woke up so I didn’t think about it much, I had a pain going across my behind. A light bulb went off and he ran out of the room and grabbed a pamphlet and it was basically the story of my life (except it only talked about the male side 😕, which he apologized for lol). We did an MRI and there it was clear as day.
It was also the day my world came crumbling down. (Let’s not talk about the 80lbs weight gain in 3 months from the medicines and I can’t lose it b/c of the same reason & the doctors are all like you have bigger problems. Let’s say that does horrible things to your body and soul but my loving amazing husband helped a lot with helping in leading to love myself again)
I can no longer work and walk with a cane sometimes a wheel chair is even needed.
Yet with all this and all my other non AS related health problems (need a kidney auto transplant, haven’t had my voice for 3 years, and I have a new fun thing when things get stuck in my throat seeing a GI specialist soon).
I do not let it get me down! Not everyone completely believes me because they only see the good days. I fought for great doctors if they didn’t believe me I found new ones. I always fight for my self and have a great support system and amazing parents because they let me live with them and take me to all my appointments (I’m no longer allowed to drive because of meds). Borrowing from Jared Padalecki’s campaign to raise awareness and help people with depression – Always keep fighting. Even though I don’t have depression those words help in my toughest days, I say it in my head when I’m at my lowest, I support his campaign because it helps other people and it helps me.
I will never give up. I have lost so much and could lose a lot more but I have love. I have love from my friends, my amazing husband, awesome parents, and my sweet cats who are always there when I need cuddles.

Kentucky, United States of America

 

I wanted to share something that brings a lot of smiles into my life, my friend Trent The Triceratops.

He is my toy triceratops Trent. He goes with me to all appointments and all of life’s adventures. I’m trying to get his Instagram to be a real advocate for AS and just living life and loving someone with AS. It’s our world from his point of view.

This is an article that was written by him on our local news source. They contacted me to have him in it.

I just want everyone to know that even with AS you can still have fun! And like you I want them to know they are not alone.

 

Thank you for all you do! Finding your site has helped me more than you can imagine. I felt alone, no one has heard of AS (anyone in my life) and so many think I’m making it up. You have helped me with realizing that I’m truly not alone!

http://www.masslive.com/entertainment/index.ssf/2016/05/follow_friday_objects_come_to.html

https://www.instagram.com/p/BCpjeZklqlp/?hl=en&taken-by=trent_the_triceratops

Picture of Trent on my infusion pump

Follow Trent on Instagram.

https://www.instagram.com/trent_the_triceratops/?hl=en

Trent The Triceratops

https://www.instagram.com/trent_the_triceratops/?hl=en

 

 

 

 


One Response to “A.S. Face 1602: Cynara Leigh-Ciraulo”

  1. Dear Cynara,
    Thank you so much sharing your story with us.
    Sincerely Cookie

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