The Girl Who Cried Sclero...

I am sure there is a general consensus amongst my friends and family that I just need to shut up already. I mean "we get it, you're sick...Stop beating a dead horse!" And I can respect that feeling, but in reality, this "horse"(aka scleroderma) isn't dead. It lives inside me, threatening to break me down and pull me apart from the seams on a daily basis.

So...no...I won't shut up about it. Not until there is more awareness. Not until the word scleroderma is as common as the word cancer. Hopefully it won't take an epidemic to make it that way, and that's why I do what I do, so patients can be diagnosed early, get better treatment, and live better lives.

So, with today being World Scleroderma Awareness Day and with all the work that has been done to spread awareness, I wanted to highlight some of this month's best moments as well as give a shout out to all my family and friends who have supported me in some way throughout this journey.

THANK YOU! GRACIAS!

1. Memes

One of the most exciting things for me this month, has been to see the overwhelming response to my memes. Both from scleroderma patients themselves as well as family, friends and total strangers. I have shared these pictures with as many people as possible and they have kept paying it forward and sharing them with others. I have received emails, messages and comments from people I've never met telling me how much they relate and how brave they think I am for putting my story out there. It has truly touched my heart and reinforces what I know to be true: I am not alone and my story matters because I can give a voice to those who cannot speak. None of the memes went "viral" but I did reach more people than I ever expected.


2. TX Chapter on Great Day Houston

This past Thursday, June 26th, the Scleroderma Foundation, TX Bluebonnet Chapter had the privilege of being in the audience for KHOU 11's Great Day Houston show. This show is a daily talk show/morning show hosted by local celebrity Deborah Duncan. Back in May, I was in the audience supporting the Lupus Foundation and had so much fun that I decided to reach out the show again during scleroderma awareness month in the hopes that they would let us be a part of the audience to raise awareness.  Earlier this month, I sent an email out to their audience coordinator and asked when we could come, in a matter of a couple of hours we had set a date and were told to bring 12-15 people to fill seats. I spent the next couple of weeks trying to rally people to make sure we had enough guests. And...we did!

I believe there were at least 20-25 people there wearing teal, and supporting our cause. Our board president Audrey Brouwer shared information about scleroderma at the end of the show and afterwards, Deborah said she would be in touch with us to bring in a patient and/or doctor to interview about the disease. (How awesome would that be!) We had a great time, clapping, cheering, laughing and even eating BBQ with Deborah Duncan and her staff. I am so appreciative of all the people that came out to support even for just 2min of fame on local TV.

Check out the segment below:

Ay Papi...

3. Family Support
It is unbelievable the amount of support I have received from everyone in my immediate family through to cousins of mine that I had no idea were even keeping up with me on Facebook or reading my blog. My family has found ways to show support in the simplest of ways and even going above and beyond what I ever expected or could have hoped. For starters, my parents have spent the month wearing teal as often as possible...even if that meant my quirky father putting his T-shirt on backwards instead of just having my mom take a picture of his back.

Love her!

My mom has also made a point to share inspirational quotes, images and scleroderma facts on her Facebook page on a daily basis. She is becoming quite the advocate!

The second group of people that have wowed me with their support in my family has been my cousins. On both my mom and my dad's side, they have done everything from paint their nails, and wear teal at the gym, to waking up at the crack of dawn just to appear on the Today Show in the hopes of raising awareness. I feel so blessed to have this many people in my life helping me fight the good fight and doing so much just cause little ole me is chronically ill.

Daniela, Cinthia, Ailin, Iraida & Iris- THANK YOU!

Throughout the years these awesome ladies have participated in scleroderma walks with and for me, sent me love and flowers after hospital visits and flare ups, and are always praying for me and trying to find ways to brighten my days. I was so elated when I spotted Iris on the Today Show this morning, making noise, smiling and waving a sign on only 3 hours of sleep! You are a trooper cuz, and I love you for it!!

Over the years, I have learned that many patients diagnosed with a chronic illness often have to cut people out of their lives because they don't understand what they are going through, or they judge them or refuse to accept their condition and choose to live in denial. I can honestly say, that my experience has been the opposite. I have had such an outpouring of love and understanding come my way (slowly but it is growing as I educate people more and more) that I almost don't know how to handle it all. My friends and family may never truly understand what I've gone through our what lies ahead of me, but they sure as hell are doing their best to support me through it, and that's more than enough.

(Yes, I know I didn't mention the hubs...he's getting a post all to himself tomorrow- ya'll know I can't do this without him...so stay tuned!)

4. Friend Support
Finally, the outpouring of support that has come from my friends via social media has been awesome. Again, it has often been those individuals that I never would have suspected or didn't even realize were "following" me or reading my blog. I love that both men and women have rallied at different times this month to wear teal, share one of my memes, or comment on a blog post.

I may feel like a squeaky wheel sometimes, but I think it's finally paying off! So, to all my friends that made one small sacrifice to show your support, and hopefully shared why you were doing it with one other person- THANK YOU! Now, my world is a little brighter because one more person knows what scleroderma is thanks to your small effort, and in order for patients lives to be saved, better treatment found, and research money to be had- awareness is key.

Michelle, Angelie & Joe

This month is not over yet, but it's getting close. Just a couple more days. But just because we reach the end of June does not mean my (our your) work is done. I know I will continue to blog (as often as energy and time permit) and I will keep doing the work I am doing for the Scleroderma Foundation until they force me out.

I know many people who are silent and private about their illnesses, and that is their prerogative. I am not one of those people and I never will be. It is important to me to empower myself and others with knowledge and awareness. If we do not advocate for ourselves, no one else will and when you're dealing with apathetic doctors and nurses, a faulty medical system, and just straight up ignorant and rude ass people, YOU HAVE to care, you HAVE to be educated, and you HAVE to speak up for yourself.

I hope that through this process I have given someone (friend, family, patient or caregiver) the strength and the foresight to continue pushing through this terrible disease and moving forward towards living a better life.

*****************************

Want to "like" the meme above?

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Twitter: @jasminnemendez


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