I was born and raised in NJ. I grew up in a beautiful neighborhood with my siblings. I was a typical kid. I enjoyed playing outside, riding my bike, cheer-leading, barbies and running. After I graduated High School I went to college and graduated with a BA in Sociology and Human Services. I was a private school teacher for one year and then went to a corporate organization where I worked in Sales & Marketing for 18 years 2000-2018.  In that stretch of 18 years I went back to school to earn my Master's Certification in Holistic Health Studies and earned multiple group fitness certifications and began working part-time teaching fitness classes, cycle (spinning) being my favorite. 

I always had a passion for fitness and nutrition. During a difficult time in my life I began running and excelled in it. I became a marathon runner and tri-athlete. The highlight of my competing years was training and completing the New York Marathon in 2008.I was working long and rewarding hours in my corporate and part-time jobs, training for races and having the time of my life when I suddenly started not to feel well. I began to vomit, have severe stomach issues and lost weight rapidly. I was exhausted. I went to dozens of doctors trying to figure out what was wrong with me. I was pushed aside and told I had IBS and was anorexic and bulimic. I was even told I needed to be admitted to a eating disorder facility. One day in the emergency room I turned to my father and told him I was going to kill myself as I was in agony. After that my family was on a mission for answers, not accusations. 

 

In late October of 2013 I went to see an endocrinologist. For some reason the physician I was supposed to see called out and I saw a different one, perhaps by the grace of God. I told him my gastro symptoms along with a new symptom. I started having pain in my hands. I was unable to release my grip from my barbells when weight lifting. I simply thought I was over training or just tired. He conducted a physical where he noticed hardening of my skin. After my exam I sat with him and my mother. He looked at me and said I believe you have Scleroderma. My mother turned ghost white and I had a blank look on my face. WHAT THE HECK IS SCLERODERMA? Blood tests revealed the physician was correct. That was the beginning of a physical, mental and spiritual roller-coaster.

 

 

Within 6 months of diagnosis my hands seized and the pain was intolerable, yet I continued to work. Then in April of 2014 I was put on disability.  I was hospitalized for a bone infection due to the ulcers that formed on my fingers and put on 3 months of pic-line antibiotic infusions 2 x day with nursing care. I was in pain everyday. My immune system was shot and within a year I was hospitalized again for pneumonia. I deteriorated fast and I felt completely alone. I felt and still feel misplaced. My work and my love for the fitness world came to a screeching halt.  

I started seeing Scleroderma specialists and decided I needed to be proactive in my treatments if I was going to survive. There is no cure for Scleroderma. There are only medical actions that can be done to try and restart the immune system. I have undergone two types of chemo therapy, IVIG treatments and clinical trials. Did any of them work? I don't know, but I am in a holding pattern almost 5 years later, meaning my disease is no longer progressing and I pray it doesn't. I maintain my health with a good diet full of phyto-nutrients and continue to exercise at my new ability.

 

2 years ago I started major surgeries to reconstruct my hands due to Sclerodactyly and Joint Contractions, which caused both of my hands to loose normal function and deformity. The pain in my hands is something I can't verbally explain. It is horrifying and debilitating physically and emotionally. I have undergone 4 surgeries and have 1 more to go. The pain is significantly less and has allowed me to ween off all pain medications. I am now undergoing Occupational Therapy 3x a week. 

Sclerodactyly and joint contractures


Sclerodactyly means “hard skin of the digits,” particularly the fingers and toes. It generally occurs after initial swelling has subsided. It is characterized by shiny, tight skin of the fingers.

Affected digits may be difficult to move, and they may become fixed in a bent or flexed position called a “contracture” or a “flexion contracture.” Tightening and hardening of the skin and tissues surrounding the joints can cause decreased motion of the wrists, elbows and other joints.

 

This is a brief description of what I went through and I what I endure on a daily basis. There is little support for those that have this disease, as Scleroderma is rare. I have had to become my own advocate and spread awareness for this extremely troublesome and life threatening disease.

 

Best Regards, Joy

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