Advocates on Steps of Congress 2013
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I Try to Not Let Scleroderma Be the Thing That Defines Me

"I hope that our story inspires other patients to keep moving forward and trying to live their lives. I also hope this serves as an example to caregivers, family members and friends of patients. Love and support means so much!"

My name is Kelly Homen and I have Scleroderma.  I am 48 years old and was diagnosed with systemic scleroderma in February of 2002.  The onset was progressively rapid and an overlap with Polymyocitis rendered me bedridden for several months to follow.  At the time my daughters were pretty young.  Hailey was 10, Jaimey was 7 and Nickey was 6.  My husband, Andrew, became caregiver to me and took over role of mom and dad, taking care of the girls most of the time.  When he was at work, Hailey, the oldest, became mom to her sisters and caregiver to me as well.   

During those months that I was bedridden, I had many moments that I questioned whether I would live.  During this time and many years that followed I prayed to God to just let me live long enough to see my three daughters graduate high school.  Eventually, my medications started to help and my desire to be a wife and mother motivated me to try to just keep putting one foot forward every day. It has been a long road and is never ending.  I still have many doctor visits, tests, and medications not to mention fatigue, pain, fibrosis of many areas of my body, and side effects of all the medication.  However, I try to not let Scleroderma be the thing that defines me. 

During these many years, my family really grew together to take care of me and each other.  This disease gives our family a different perspective.  We have come to value the little things in life.  So this summer God answered my prayers and I watched my baby girl, Nickey, graduate high school.  She will attend the same college as her sister, Jaimey,   in the fall.  I also got to witness my oldest daughter, Hailey, graduate college!  My husband and I also celebrated our 25th wedding anniversary in June!

We celebrated by taking a family vacation to Florida.  On this trip to commemorate all these milestones, we all got Scleroderma ribbon tattoos.  It was a first tattoo for all of us and I battled with the idea for a long time.  I checked with my doctor first to make sure we both thought it would heal properly.  These tattoos are all different but have the scleroderma ribbon and teal color of the Scleroderma Foundation logo.  They represent our journey and the love and support my family has for me.  I feel honored that they would get these tattoos on their bodies for me.  It is also creating so much awareness.   I love when someone asks about the tattoos and I hear one of my daughters or my husband tell our story about scleroderma and the Scleroderma Foundation!!!

I hope that our story inspires other patients to keep moving forward and trying to live their lives.  I also hope this serves as an example to caregivers, family members and friends of patients.  Love and support means so much!

 

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