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.
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
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.
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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