Defying the Odds of A Painful Journey with Scleroderma
My journey is NOT easy or simplistic, this is by far one of the hardest things I’ve had to write, admit and cope with. Once my first few symptoms showed their face, everything progressed quickly. After that, I found myself going through the worst journey of my life.
My symptoms started in mid-January 2016 when I complained of joint pain in my index finger like I had jammed it yet I knew I hadn't. For weeks, the pain persisted and then spread into both index fingers as well as the joints in my hands. My doctor just sent me home with Tylenol and an ice pack. Several weeks after that, the swelling returned to my hands and feet, and then I started developing Raynaud’s syndrome which is a condition in which some areas of the body feels numb and cool in certain circumstances. You think my symptoms stopped there? No. the ugly truth of Scleroderma was beginning to surface and I did what I thought was best for me, I hid my pain. I hid the fact that I was struggling. Things were changing, blood work was coming back negative, and PHYSICALLY nothing was seen. I knew something was very wrong when I was leaving class one evening and I couldn’t lift my backpack. It was like something was fighting within me, I was scared and very confused. I went from doctor to doctor to find the appropriate diagnosis, my body was crying out for help and I felt like no one was ready to believe what they couldn’t see and I couldn’t explain what they couldn’t see.
The Diagnosis: Scleroderma
From January to May it was mostly joint pain, swelling and color changes in my hands and feet and I thought the treatment I was on was benefiting me. After my May diagnosis, I had a one month check-up and during that time that’s when things got worse for me. The swelling never went away, the fatigue increased, my joint pain was so severe I couldn’t get out of bed, I had a persistent cough, skin tightening occurred around my wrists, my toes were always numb, I developed finger lesions, swallowing became difficult and my skin started to change. I was practically bed bound and for those who are wondering how this changed my life. Just look at what I love to do the most; dance. Dance has played a huge part of my life, most of you that’s all you know of me to do. I no longer could dance the same and if I did dance I was in pain 95% of the time but I would have never let you see that. Was I ashamed? Probably, but how else can a 26-year student and dancer for over 15 years take on a non-curable, no cause diagnosis such as Scleroderma.
Learning About Scleroderma Everyday
May – December was a dark time, I’m not even sure I can piece together the events of my life during that time, dark is the best way I can describe it and change was real. The biggest challenge is having to tell someone about an Invisible Disease, having to tell them that sometimes you need help opening things with caps, doors, windows, or even writing your own name down on a piece of paper. Everything hurt, I couldn’t be touched, hugged, I refused to shake hands, it was that painful. I struggled to attend classes and focus, I never wanted to go outside again. I felt alone, no one understood my pain and I had a new symptom each week. I went through trials and trials of medications and tests, doctors trying to see which worked and what didn’t. 11 meds in the morning and 11 meds at night doesn’t seem like a lot right? Blood work being taken every week wasn’t enough either. I lost a huge amount of weight, I was hospitalized on several occasions to medication interactions. I was tired but who really knew my pain? Would you have known? Would you have believed me? In September of last year, I finally became a patient at one of the country’s top Scleroderma Research Centers in Pittsburgh. I have 2 doctors, 3 research assistants and an awesome occupational therapist who helps me work on my mobility and use of my right hand. I have a good support system and although those months never seemed like they would end, I was hopeful. I hated my situation but I was very hopeful. Being in class was still hard, felt like I was spaced out and asleep half of the time.
How was I able to push through this? What was motivating me to get out of bed, fight through the pain and smile? I honestly have no idea, I’m still trying to figure out the basics of Scleroderma because every day is different for me, some days are extremely hard but you would never hear me complain. This past January, 7 months after my diagnosis, I was finally told that I have Diffused Scleroderma which is under the category of Systemic. It involves skin thickening and tightness usually also extends from the hands to above the wrists. This form of scleroderma more frequently involves internal organs, such as lungs, kidneys, or the gastrointestinal tract. Although this is the more serious form of Scleroderma and it has changed my appearance from what I can only see apparently.
I do not let Scleroderma take away my life anymore
I have begun to live my life more, I take more chances, laugh more than ever and love harder. I had let Scleroderma take every ounce out of me until something clicked, maybe I realized it laying in the hospital that all of this could end or maybe when the medication made me sick all through the night for weeks and then months. I let Scleroderma take away my life essentially and I was just left there, just a shell. I may not have everything together and everyday is still a challenge. Somehow, I have found my peace and I know that my purpose has become much greater than I can imagine. If anything. I’ve just begun to live and I won’t let anyone take that away from me.
My diagnosis meant everything to me because I’ve been dancing since I was seven, so the ability to move & function means everything to me. I established an Afrobeat dance group/company in 2009 and I’ve been teaching African dance movements at dance workshops and choreographing routines since the age of 12. With the right doctors and care team, I have made huge progress with my mobility and things are stable enough for me to be more independent. I have continued dancing and consider dance to be my super power. No matter how much pain I’m in, I smile and push myself a little each day to progress my dance movement and ability. Not only that, I was able to graduate with my Masters in Education with a certificate for K-12 Autism and other disabilities in May 2017. Although I am newly diagnosed, I still try to see light of my situation no matter how I’m hit and push through by continuing to do what I love with no limitations. I have recently created a page to help inspire others to continue the fight and move!