Team Taylor: Rare Disease Video

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Team Taylor: Rare Disease Video

Hey everyone! 

For Rare Disease Day 2016 I am creating a video to help the cause of bringing awareness. My goal is to have spoonies and non spoonies along with pictures and facts in this video. I want to show the good and bad of these rare diseases that we have to battle each day. 

Those who are not spoonies can be part of this video by sending in pictures of them holding signs with encouraging words for those who battle each and everyday. 

For the spoonies, there are two options you can choose from. You can choose whichever you feel most comfortable with. 

       Option #1: Send in a picture of you holding a sign with words to describe your battle. Example: I am a fighter / I am not my disease / Warrior / etc. 

        Option #2: Another part of my video is a special feature portion. For this portion you can either submit a short video clip or a few photos of daily life with a rare disease. 

Along with your submission of either photos or a video clip, if you could send me your name / age / and names of your disease(s) that would be great. For each disease that I have a representation for I will be adding in 2-4 facts. For diseases that I don't have photos for will most likely receive 1-2 facts depending on how many submissions I get. 

Thanks in advance for helping me with this video. 

-Taylor N. 

 

P.S.

Here is my contact info if you have any questions 

Personal Facebook: Taylor Nearon

Email: teamtayloragainstmcad@gmail.com

Instagram: taylorrr_nearonn

 

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Color the World Orange

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Color the World Orange

November is Reflex Sympathetic Dystrophy (RSD) Awareness Month. Monday, November 2nd, is Color the World Orange Day to raise awareness for RSD. RSD is a rare neurovascular pain syndrome caused by a dysfunction of the sympathetic nervous system. The nervous system is on overdrive and sends pain signals when there is no need. 

(For more information go to RSDSA) 

I have RSD and will be posting my story later this month as part of awareness month. If you have RSD and want to be spotlighted as a part of awareness month please contact me: contact.sickchick@gmail.com.

Even if RSD does not affect you personally there is something unique and special about the way the chronic illness, rare disease, and disabled community sticks together. You don't have to be a part of this community directly (being affected by illness, rare disease, or disability) to show support or spread awareness. We're all in this together!

Post pictures of you wearing orange on social media and tag me in the pictures you post! Twitter: @sick_chicks Facebook: Sick Chicks Instagram: @shira_strong Use #ColorTheWorldOrange and #RSDawareness 

Xoxo, 

Sick Chick 

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Make Noise For Turquoise

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Make Noise For Turquoise

On Saturday several brave people with Dysautonomia (including myself) did a beach 5K to raise money and awareness since this month is Dysautonomia Awareness Month: MAKE NOISE FOR TURQUOISE.

Dysautonomia is the dysfunction of the autonomic nervous system, meaning that everything an able bodied person’s body unconsciously controls for them, a person with Dysautonomia's body doesn’t; heart rate, blood pressure, breathing, temperature etc. There are different types of Dysautonomia and there is also general Dysautonomia. Personally I have Postural Orthostatic Tachycardia Syndrome (POTS) and general Dysautonomia. POTS: when I sit up or stand up my blood pools to my extremities, so it doesn't circulate, my blood pressure tanks, my hear rate skyrockets to compensate, and I pass out. I’m on medication to help keep this from happening.

(For information go to Dysautonomia International)

So, why were we so brave to do this 5K? Well as I said with Dysautonomia temperature control is an issue. We should’ve thought ahead and figured Southern California on the beach means it would be ridiculously hot, but no we did not. Also, heat lowers already tanked POTS blood pressure. It was very hard to keep hydrated out there, which didn’t help. Most of us didn’t run, I ran for a little bit, but very quickly regretted it. The 5K was on the beach, and the sand messed with my joints. Plus, my own screwed up situation with my back.  Get this: I had old people making fun of me for how slow I was walking.

So, I guess we weren’t brave, but stupid… Oh well, we had fun, raised awareness, raised money, and everyone had amazing naps after!

Everyone who went to the walk got decked out in blue to show their support for Dysautonomia Awareness Month. My friend and I had on blue lipstick and blue eye makeup. We had splatter painted t-shirts in my backyard the week before. We even had blue super hero capes, plus flower crowns – because we’re basic California girls like that. My friend had a blue tutu too (try saying that three times fast…). There was one woman with a blue wig, it was awesome! The best probably was one of the only specialists for POTS in San Diego came to the walk. He was such a good sport and even put on a blue feather boa for the walk!

So, what did you do for Dysautonomia Awareness month? Post comments, pictures, whatever! I want to know. And head over to Dysautonomia International to learn more about Dysautonomia and ways you can be invovlved.

(I know I posted their link earlier, but here it is again)

Xoxo, 

Sick Chick 

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We Are More

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We Are More

So, if you follow me on twitter you’ve probably been seeing me use “#WeAreMore” a lot lately, and you’re probably like, “What the heck is that all about?”. I know I talked about it a little in my “I Look Sick In My Blue Genes” blog post, and in the podcast I did with Levine Media Group and Global Genes. I’m going to clear it all up now!

 

We Are More is a new advocacy initiative that I’m so excited about. We Are More is a group of chronically ill and disabled young adults who want to show the world that we are more than our illnesses and disabilities. We are not disease specific, and our board reflects this.

 

Something we have found is the media does a terrible job at portraying disabled young adults (refer to my blog “Media Madness”). “…is it too much to ask for there to be some disability representation in the media?  Sure, there’s that one girl in a wheel chair in that one episode where the main characters are learning a lesson about kindness and acceptance. And sure, there are shows like Red Band Society or Chasing Life. But, in their attempt to be inclusive and educational, these shows actually perpetuate ableist culture.” – quote from “Media Madness”. Our goal is to change the way society thinks through the medium of media. We will eventually be starting a YouTube channel and doing other advocacy through social media.

 

Our first project is making a two and half or so minute “trailer” to give people a taste of who we are and what we plan on doing. We will be including videos, pictures, and interviews that show, while yes we are sick, that doesn’t define us. We are more than that.

 

If you have an interest in being involved or seeing how you can support our project email contact.sickchick@gmail.com

 

Xoxo,

Sick Chick 

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Woman Crush Wednesday: Self-Love

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Woman Crush Wednesday: Self-Love

My Woman Crush Wednesday this week is myself. Yes you read that right. I don’t normally post personal stuff on Instagram but I am today…for starters I can’t tell you how many nights I’ve been so sad or angry about my situation that I thought I was going to lose my shit. And honestly 98% of those battles have been behind closed doors. Because I didn’t want anyone to feel bad for me or be a burden to anyone OR when I was willing to open up nobody was around. So who was there to pick myself back up all the times I’ve been knocked down? Who’s been to hell and back more times than she can count? What’s gotten me this far? Who doesn’t put up with people’s bullshit? The answer is simple…I’m the one who’s picked myself back up. I’m the one that doesn’t allow myself to be treated like shit. I’m the one that made it through hell and back. And (even though a lot of family has helped however they could, which I’m forever and eternally grateful for) ultimately I’m the #1 person that’s gotten me this far when I probably realistically should’ve been dead by when. I never usually say good things about myself, but I’m starting to realize how important self-love is. I want to take the time to acknowledge myself and how many obstacles I’ve overcome in my life and say that I’m hella proud of the fighter and advocate I’ve become.

 

Written by Morgan McCastor

Originally a #WCW post on Instagram

@morganmccastor 

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Moma's Box of Memories

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Moma's Box of Memories

My mom, Virginia Gentry Gould, spent 12 long miserable years battling Huntington's Disease (HD) in a nursing home in Hico, Texas. They were geared towards helping people with HD. She passed away in 2011 from HD.

Before HD took over, my mom loved going on Harley rides with my Dad, she had her own sportster, she also loved writing poetry she wrote the most beautiful poems! That's where I picked up my passion for writing, from my mom!

My song, "Moma's Box Of Memories", I wrote in my Moma's memory as a tribute to her, I created a YouTube Video for her for Mother's Day. Here's is a link to the video:

http://youtu.be/IdiT7aGGo-k

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A Chick’s Best Friend

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A Chick’s Best Friend

While spotlights will usually be about Sick Chicks, I decided to do the first one about one of our best support systems – service dogs. You’ve been seeing the name “Mer” all over the website, well now you get to meet the man beside Mer, Sami the Service Dog. I will be interviewing Sami with the help of his mom Mer.

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