“You have 2-5 years to live, but don’t worry, you’ll never have wrinkles.” Imagine being 22 years old, alone, at a doctor’s office listening to a doctor you’ve never even met before say those words. The appointment was to check out a very worrisome finger ulcer. I had no idea that my life was about to change dramatically, not for a few weeks, but for the rest of my life. When diagnosed, I was living the “American Dream.”  I was living in Phoenix, working a decent job, dating a great guy and enjoying being young with my friends. In my world, everything was perfect. When you’re in your early twenties you’re told over and over again how the world is at your feet, or how the world is your oyster, or how you can do anything you set your mind to. But, life happens right? Surprise! You are not going to be the exception.

Life happens. It is how we respond that matters. We must recognize that the choice is ours. The choice is ours to love both our good and bad times, for we never know what the next minute holds. For me, the thing I learned right away after being diagnosed was that all my dreams and aspirations were taken from me. You no longer live for you, you live with your chronic illness and what it allows you to do. It is now up to you to find the light in all the darkness.

My life is defined by my disease. Rapidly Advancing Diffuse Scleroderma is debilitating. It causes your whole body to produce massive amounts of collagen which then hardens everything from your skin to your organs. The best way to describe how it feels is to imagine wearing a straitjacket head to toe, 24/7. Imagine your fingers permanently curled so you’re unable to button or zip your clothes. Imagine having so little energy that you have to choose between showering that day or hanging out with friends. Imagine feeling “at home” in a doctor’s office or hospital. Imagine never being able to lay flat again because your esophagus no longer functions and what goes down will most likely come up. Imagine waking up in so much pain that you can’t even get out of bed. Imagine needing someone to help you pull your pants down to go to the bathroom. Imagine never being able to do the things again that you love, like snowboarding, wakeboarding, volleyball, swimming, working out or being active in anyway. This disease has stolen everything from me that I once loved doing.

It’s okay to grieve your past life. If you don’t, you’ll become bitter, not only towards the activity but even toward family or friends enjoying the things you once loved. It is okay to hate God and ask why, over and over again. If you don’t, I’d wonder if you had yet to really face your disease head on. It’s okay to be sad and frustrated. Being strong doesn’t mean you don’t cry or you don’t have days of hating everything. Being strong means you face your demons, but, in the end, you smile and be thankful for what you do have. Don’t get me wrong, some days feel as if scleroderma has tied a rope around my waist and can pull me down at any second it chooses. And it often does.

Yes, your life may be completely different than you expected, but it means you get to view and experience this life on earth with a whole different lens. When you’re healthy and feel well, you can easily take the smallest blessing for granted. But once you accept the cards you’ve been dealt, you can open your eyes and heart to see why you were chosen for this path. For me, this is now my new normal, and I am grateful for the changes I had to adjust to. I see more joy and love then I ever did before scleroderma. Throughout my journey with scleroderma, which came with a diagnoses of a guaranteed shortened lifespan, I’ve learned that I can’t let scleroderma take everything from me. Which isn’t easy, mainly because my disease most definitely defines me, but that being said, I am also determined to define my scleroderma.

It’s okay for me to have days of self-pity and be frustrated, but with that I also get to choose joy. I try to focus on the good, not the bad. Over the past six years since my diagnosis, my family and I have struggled to come to grips with the reality of chronic disease as everything else seemed to shatter. During these past years, a nephew of mine was born with no lower arms and hands, my dad’s Alzheimer’s went from semi-okay to him now being in a home wearing diapers, we lost our family home of over 30 years because of my medical debt, and our family has been torn apart due to all the stresses we have faced and continue to face. I want you all to know that I know struggle, pain and despair, but I also know that joy is a choice, and I choose it daily. The main thing scleroderma will never take from me is my smile and love for life. I also now see the blessing in everything and in every detail. I know now that the first blessing I receive in the morning is when I open my eyes.

“Cure for Cat” gave me my meaning in this life. I finally realized why I was chosen for this journey. Three years ago in January I received a stem cell transplant in Chicago, Illinois. Six months earlier,  my body had been failing fast. It was obvious scleroderma was winning. My doctor said the only hope for me to was have a stem cell transplant. My insurance company disagreed and denied coverage three times. Time was running out. My family and I then asked my graduating class of 2006 from Northwest Christian School to help raise funds to cover the medical costs. It was then that “Cure for Cat” was born. In a few short months, enough was raised to cover the transplant costs and everything in between. The transplant was successful. I had gotten my independence back. I knew I’d never be cured, because of the several health issues that remained, but at least I could now shower and dress myself and be independent. For me, a young 24-year-old woman, that meant everything. Because of “Cure for Cat,” I was able to grow a good sized following on several social media outlets. Those contacts gave me the chance to help others suffering from scleroderma and other diseases, and also I’ve been blessed with the most amazing friendships that will last forever.

I have become truly grateful for my disease and all that came with it. When I’m feeling down, God always shows me in some way that my illness allows me to be a light to others in their darkness. I’m often asked how I smile after all I have been through. The only answer I have is that it’s not me, it is all because of Jesus. My faith makes every day bearable, and that alone makes all the pain and suffering worth it. These past six years have been, hands down, the hardest years of my life, and as of today it doesn’t look like it’s getting any easier. I celebrated my 28th birthday a couple months ago, and, while reflecting on my not so normal life, I realized that…

…in order to survive living with a chronic illness, it is crucial to surround myself with uplifting supportive family and friends. I’ve met incredible people suffering with incredible diseases. I’ve lost many dear friends to scleroderma and other diseases, and they all have played a huge roll in my life. I’m different because I knew them and did life with them while we could. I owe a great amount of my life to those who died. My other friends who are healthy are constantly encouraging me.

What is next? Sadly this past summer we found out that I have officially relapsed from the stem cell transplant, and may need a donor transplant soon. Meanwhile, a new medicine has been approved for scleroderma. I’m self-injecting Actemra weekly and will, hopefully, see results within six months. While I wait, I am determined to live life to the fullest. Laughter comes easily for me. Making memories is what I am all about. Opportunities to spread awareness about scleroderma come along often. Chances thappen to hold out my arms, which are crippled with hard skin, and say, “This is scleroderma!” and I can—and will—still smile and say, “It is okay.”