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Riding for Strength, Support and Organ Donation

fter being diagnosed with lupus at age 11, ALEX PARADYSZ struggled with her health for years, eventually getting a kidney transplant. Four years later she began riding at SOUL and discovered a sanctuary of support. Now in needs of another kidney transplant, she shares her brave journey…

Sometime between Christmas and New Year’s Eve in 2003, I developed a fever that reached a constant 104 degrees. With swollen glands and fatigued eyes, my petite 11-year-old body was taken from the pediatrician to the hospital where I was admitted immediately — and eventually diagnosed with lupus.

Lupus is a chronic autoimmune system disease that randomly attacks different parts of the body. The skin, brain, heart and lungs are all vulnerable to the disease. Mine attacks the kidneys. Over 1.5 million Americans have lupus. Diagnosis usually happens to young women of childbearing age but men, older women and children also stand a chance.

Every lupus patient’s symptoms vary in minor to extreme. They can include: rashes and sensitivity to the sun, fever, swelling around the joints, chest pain, mouth ulcers, chest pain from breathing and pale or purple fingers from the cold. The symptoms are so vague and mimic other diseases, it makes it hard to formulate a direct diagnosis for lupus. Instead, a series of tests is completed. Because of this, I remained in the hospital for weeks before I was diagnosed. I slept under ice blankets to keep the fever down, gained and lost weight, learned which nurses were better at pricking me with the IV needle, gave up school and friends and horseback riding.

From there, my lupus went into remission with only a few flare-ups that resulted in biopsies and blood transfusions. In June 2010, I was put on dialysis because I had no kidney function left. The dialysis machine acts as an artificial kidney. I had surgery in my left arm where they put a synthetic tube under the skin. This tube connects the vein and the artery providing access for the needles to hook up for dialysis. That October, I had my first transplant. I am incredibly lucky the process happened so quickly and I had someone close to me donate.

Now, I need a new kidney and I’m hoping for the same prompt and swift donation process. Recurrence of lupus only happens between two and 30 percent of the time and although I don’t feel any symptoms of kidney failure right now, I can feel my body slowing down. My goal is to have the transplant before April or sooner if we can find a match.

When I started riding at SoulCycle two years ago, a lot of change was happening in my life. My family sold our farm in Florida, I was selling my horse, in the middle of my Master's program, I had moved in with my now-fiancé and my doctors were beginning to prepare me that I would need a transplant within a few years. Something magical happened when I started riding consistently… my body took a breath, and my mind calmed down. I had 45 minutes where I could concentrate on the power I was creating. I was able to focus on the movement and the energy I was putting out.

Now, I’m stepping off the plateau and climbing through changes again. I’m getting married in October, I’m writing a book, and looking at another transplant. This past year has dramatically shown me what I’m capable of and how much I can handle. I’m giving a lot of that credit to SOUL and the people I’ve befriended in the community. They’ve taught me: It’s not just that I’m strong, it’s how my strength impacts others. That is a beautiful feeling.

When I first announced publicly that I needed a transplant, I had the SOUL community behind me. It’s incredible to feel support pushing you forward when you feel like backing down. That’s what is created in the sweaty room and that energy follows into friendships.

I believe I was put on this Earth to learn strength and to understand how far it will travel. I’m not sure who I would be without the setbacks in my life. I’m thankful for them and for that, I learned how to motivate myself. I learned what my body needs in terms of rest and sweat.

My support team is unbelievable. I am extraordinarily lucky with my family and the friends I have that have been there for me. They show me what motivation is, whether it’s inadvertently or voluntary.

These days I ride with Ellena, Jade and Grace, and I’m holding a charity ride on December 17th at 2:00 PM at SoulCycle Woodbury. My goal for the ride is to raise awareness about lupus, kidney disease and transplantation. I want people to understand organ donation. Having the words “organ donor” on your license is a wonderful gift, but being a living donor is misunderstood. I want everyone to have the knowledge of organ donation and how much of a commitment it is. Maybe then they can take the information so they can pass it along. Maybe they can’t help me because they aren’t my blood type or their antibodies don’t match up, but they can still spread the word. The money for the purchase of the bikes is going directly to the SLE Lupus Foundation.

From the moment I was diagnosed, the foundation has been the base of support for my family. The founder’s daughter died recently. She single handily found my rheumatologist, worked with my dad and became a family friend. For everything she has done for lupus patients around the world, I want to honor her work. I want to show her how strong of a community she created. Everyone is welcome, even if we haven’t met!

Every day is another day you wake up. You can touch sand between your toes, lay your head on the grass, or throw a snowball at your sibling. Be brave and wild at heart. This is your time. You have one life. Live it to the best you can. You were given this particular life for a reason. You can handle it and when you feel like you can’t, because there will be days when it all seems like too much, admit you need help and turn to the support you have. If you are hurting, you don’t need to feel that way forever. Friends, family, partners… they all want to be there for you. Allow them to. Allow yourself to feel. Cry in the shower because it feels good to have tears run down your cheeks as hot water pours down your back. Allow yourself to dance around singing because it is your body and that is beautiful.

In the words of my first kidney donor, “If you’ve ever wondered how it feels to have God tap you on the shoulder and ask for help, this is your opportunity." It may well be the most spiritual, gratifying experience of your life. I highly recommend it and if I were lucky enough to have three kidneys, they’d be wheeling me into that operating room again, and you wouldn’t even have been offered this chance.

Do you have a SOUL Story to share? Email! Want to ride? Grab a series HERE and book a bike!

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