Sunday, June 22, 2014

On Strength & Beauty

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It is now day 22 of National Scleroderma Awareness Month and we have but a week left until it is officially over. But for those of us living with this disease, our campaign to raise awareness and our struggle to overcome our daily challenges is never over. For many of us, the one thing that keeps us going (aside from our friends and family) is the work that we do to educate and inform others about this terrible disease. Because I am not the only one trying to raise awareness and because I have met so many other wonderful souls whose lights shine just as bright if not brighter than mine, I wanted to take some time during this month, to recognize those women that have inspired, educated, and informed me along the way with their incredible stories, triumphs, tribulations, and strength. After all, I am not alone, and it's not all about me.

Today's meme and post is dedicated to all my sclero sisters, many of whom may not always feel beautiful on the outside, but carry more beauty in their souls and hearts than most people I have ever met.

Scleroderma has its visible symptoms as well as its invisible ones. For a young female in her 20s-30s, the physical manifestations of scleroderma can be frightening, annoying, and depressing. Your lips grow smaller, your skin grows tighter (which at first makes you look RADIANT) and itchier, you may suffer from discoloration and telangiectasia (tiny red spots) on your face, arms, hands and neck. It can definitely begin to wreck havoc on your self-esteem and social life if you let it.

It is not easy to accept these changes at first, but those of us that understand that there is a greater purpose to all of this quickly realize that our beauty is more than skin deep. That our beauty lies in our strength, in our smile, in our souls, and in what we have to give. 

Although I have only met one of these ladies in person, they inspire me each and every day to push through the pain and let my light shine. See, I kept waiting for the darkness to go away until I realized there would always be darkness -but it was up to me to let my light shine through the darkness so that not only I could see, but so that others could see and experience the warmth that my light gives- these ladies have taught me how to do that. 

Jovana is one of the support group leaders for the Scleroderma Foundation San Antonio support group. I first met her last year at the Stepping Out to Cure Scleroderma Walk in San An. She and her group single-handedly managed to host the largest walk TX has seen in a while! There was a marching band, face painting, waffle breakfast, bouncy house, DJ, raffles and giveaways. It was quite a turnout and quite an event. 

Since then, we have connected via Facebook, at a patient education event, and at a recent fundraiser (again, another success!) in San An. In this small but tight knit scleroderma community, it doesn't take much to feel connected to other patients, and I can honestly say that although I don't know all of the details of her journey/story, we are sclero sisters. She is a kind and gentle soul with a very large and giving heart. Her work with the foundation is driven by passion and desire. I hope that as the years go by, I am able to give as much as she already has.

Here's her story as published in the March/April Scleroderma Foundation TX Bluebonnet Chapter Newsletter: 

"You have Scleroderma." At the age of 14 I had never even heard such a word. My symptoms of cold fingers and skin changes started the year before in which doctors kept saying to "stay warm" and "stay out of the sun." My mother knew there was more going on than just being cold. 

I was forced to quit playing softball and volleyball in high school because my hands were starting to stiffen up and curl in. My joints were inflamed, I wasn't able to swallow my food and it was difficult to walk. Soon after I couldn't even jog a few blocks due to the severe shortness of breath. When doctors realized the Scleroderma was causing fibrosis on my lungs, they immediately started me on several toxic drugs to try and slow down this progression. At the rate this was going I was told I wouldn't live past the age of 19.

Fast forward a years, after numerous hand surgeries, hospitalizations, and years of IV infusions my lung involvement was considered "stable". Or so we thought.

I was frustrated and angry with seeing every doctor in the book, being in every hospital, taking so many medications for this disease all to just be stable for short periods at a time. I just chose to live and cope the best way I could. I was getting married and had already had a son. My wonderful life seemed to distract my symptoms for some time.

Early 2007 was when I hit rock bottom. Getting around on mostly a wheelchair and on oxygen 24hrs a day, I didn't even look the same. I remember the look in my doctors face when he told me there wasn't anything left that he can think of to help with the lung involvement. I thought to myself "That isn't true!" I have my whole life ahead of me, all I prayed for was to be a mother and a wife.

I was sent to see Dr. Burt at Northwestern Memorial Hospital in Chicago. He was conducting a study using healthy stem cells that were showing to reverse or possibly pause the progression of Scleroderma. The study consisted of intense chemotherapy, injections, isolation, and an almost 3 month stay in the city.

I promised my son and my family that I would return home a healthier person. I kept that promise and just completed my final follow up visit this past November. Instead of my lungs being "stable" they have improved. I consider having Scleroderma a blessing to me. Despite enduring such pain and setbacks, I find joy and fulfillment in having met so many people in the past 17 years. With pain comes strength and I choose to LIVE my life one day at a time. I am now one of the support group leaders in San Antonio. I love our group so much, we are family and I wouldn't want anything different.

Jess is a young lady from Florida that I met while simply searching the word "scleroderma" on Facebook. She and I have never met in person, but we exchange stories, health tips, and ideas via Facebook often. 

She is younger than I am, and has already done so much to raise awareness not only in her own
community but across the country as well. She has way more followers and "likes" than I ever will and her spirit, strength and tenacity shine through in everything she does. (And that's just from the pictures I've seen- can't wait to meet her in person one day!) From fundraising events with the Miami Dolphins, to making presentations and motivational speaking at health fairs and events, she inspires me to keep raising awareness on good days and bad days because if she can do it, then so can I.

She has overcome more obstacles in the last 6 years than most people her age will in a lifetime and she will continue to fight this battle, as she is now trying to raise money to undergo stem cell procedure to at least slow down the progression of the disease so she can continue living her life.

Here is her story via her website: Scleroderma Strong (see, how awesome she is, she even has a freaking website dedicated to her journey and raising awareness!!)

And last, but definitely not least, my dear friend Tricia Moses. She and I were connected through my cousin Iraida who told me she had a coworker that was suffering from the same illness I was and wanted to connect with someone who understood what she was going through. Around 2009/2010 Tricia (who lived in NY at the time) and I connected via telephone and spoke for over an hour comparing symptoms, medicines, laughter and even a few tears. 

I immediately Facebooked her and we have remained connected ever since. Tricia's story is probably the most incredible of them all. She recently underwent a double lung transplant (yes, double) just to save her life. The fibrosis in her lungs had gotten so bad she was on an oxygen tank almost 24/7 and the meds were of no use. She first postponed the procedure to ensure her students did well on their state tests (oh, how us teachers will do anything for our kiddos), and then she had to wait several months before getting a donor. She finally did, and is steadily recovering. 

All the while, she posts daily inspirational quotes, takes amazingly cute selfies, and lifts me up when I'm feeling down and have no one else to turn to. 

Tricia also was nominated for and WON a Hometown Hero Award for the work she did in the classroom while battling this disease. (If that's not beautiful, I don't know what is) See the link and video below for more of Tricia's amazing story! 

What I love most about these ladies is that they don't sit around feeling sorry for themselves. Of course they have bad days. We all do. But they take what little energy and good humor they have and share it with others. They are more positive and full of life than most "normal" and "healthy" people because they know how lucky and blessed they are just to be alive.

What do YOU think of my sclero sisters? Please share your comments below!


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