2007 was a rough year. It began with extreme fatigue, swelling in my hands and feet, and shortness of breath. After several weeks of testing and steroid treatment, I was getting worse. My husband insisted that I go to the emergency room, where subsequently, I was hospitalized and went downhill quickly. My organs (kidneys, heart, lungs) were failing, and it was far too complex complicated for that hospital to care for me.
Thankfully, I was transferred by ambulance to Michigan Medicine. After a very stormy few weeks, I was diagnosed with acute crisis Scleroderma. I was lucky to survive, thanks to the Michigan Medicine doctors and staff.
Hopefully, my story compels others who find themselves diagnosed with Scleroderma to get their care from a dedicated scleroderma specialist.
I am currently most affected in my gastrointestional tract and my hands/wrists. My family and traveling are my main interests. And learning about research related to Scleroderma gives me great hope.
"None of us willingly chose to be a member of this scleroderma "club." Yet here we are! I have learned that it is possible to face this disease with the help of family, friends, medical folks, fellow patients, and others - and not only face it but thrive. As a wise person told me, 'You don't get to pick your disease, but you do get to pick how you approach it.'"
At the age of 6, I was diagnosed with localized morphea on my right arm. It started out the size of a quarter and looked like a bruise. The dermatologist did a biopsy and referred me to Pediatric Rheumatology at Michigan Medicine. The disease began to spread rather quickly, all the way up and down my right arm. My right hand ended up being affected rather severely. My ring finger is permanently fused at 90 degrees, and my pointer finger does not have a nail. I also developed arthritis in my hand and wrist.
I started my first round of treatment in second grade. It consisted of prednisone and weekly methotrexate injections. This caused weight gain, nausea, and a slew of insecurities. I was able to stop the prednisone within a year, but the methotrexate injections continued for a few years. The disease stabilized throughout middle and high school. I was able to shed the steroid weight and feel more confident in my skin.
I became someone who could self-advocate in healthcare settings, which came in handy during my second round of treatment. During my sophomore year of college, I started developing lesions on my chest and left arm. I was put on IV steroids and methotrexate pills. I ended up having to stop the IV steroids for quality of life reasons. I continued the methotrexate with no side effects. Since then, I have been on what they call 'maintenance' drugs--mild immunosuppressants.
I focused my undergraduate studies at Michigan State University on medical social work and have elected to get my master's degree in public health and social work at the University of Michigan. I hope to use my chronic illness experiences to help decrease healthcare disparities in populations that face chronic illness. I'm specifically interested in health literacy, doctor-patient relationships, and palliative care before hospice.
In July 2017, I underwent a stem cell transplant at the U of M hospital. The best decision for me! This journey has not been an easy one; however, I continue to stay positive, especially knowing I have a fantastic support team behind me at U of M!
I was diagnosed with Scleroderma in October 2011. I have been blessed to have the great doctors and staff at the Michigan Medicine Scleroderma Program help me along this journey.
My first symptoms appeared in January 2011. After many months and many doctor visits, I was referred to Michigan Medicine. My hope is to help others going through this disease. There is hope that we can share. Nobody should go through this alone.
I felt like the Deer in the Headlights when I was diagnosed with Diffuse Sclero in '13. The diagnosing rheumatologist told me I would not live a long and full life. Luckily I was referred to the U of M Scleroderma Clinic.
And with the care of Dr. Khanna & the great staff there, I've leveled out to only maintenance patient care.
Not only did I receive the finest treatment to achieve this, but my hope was restored by everyone also.
Right from the start, I became an Advocate for the Scleroderma Foundation. And even before I became a Patient Peer Mentor, I started helping others going through the same Headlights I faced after my own diagnosis. The feeling of helping someone or restoring their hope is an indescribable & emotional experience.
I am currently working full time, which can be challenging but helps me to keep my mind active and moving forward. I have also been diagnosed with cardio and pulmonary conditions related to my Scleroderma, along with the condition itself. I enjoy a deep laugh most of all, whether with friends or family or just watching a silly thing on tv, a good laugh makes all the stress of the day go away.
While I was living in Tuscon, Arizona, and tending to our 1-year-old son, I began to notice painful ulcers on my fingertips. As the ulcers persisted, they became unbearable. It would be another long and painful year before I got any answers.
In January 2007, doctors were finally able to link my painful swollen fingers to Scleroderma. I could hardly pronounce it, let alone understand it. I knew I couldn't ignore it. I had to set boundaries for myself and even had to teach myself a really important word: no.
After reaching a point of exhaustion, we relocated to Michigan to be with family and friends. It's nice to be around other people who understand the disease, especially since I don't look sick to most people.
I can't work. I love people. I'm a people person. I want to make a difference in people's lives. On this journey, I'm still going to make a difference in people's lives.
In early 2012, my life voyage was headed towards Scleroderma. My first physical signs were in my palms. Both palms were bright red for a few days, then white specks would appear. Or one palm would be a different color than the other. I started seeing changes in my fingers. My knuckles were looking swollen, and my fingers were curving. By the end of summer, I was referred to a Rheumatologist. After several appointments, which included X-rays and lab testing, I was diagnosed with Raynaud's disease.
However, the changes in my hands/fingers were getting aggressive. Fatigue started to set in. By the third visit, the doctor said, "I believe you have Scleroderma." Sclerod.. what?
I was immediately referred to Michigan Medicine for an official diagnosis. After my lab tests, heart, lungs, and GI tests, I was officially diagnosed with Systemic Scleroderma. This was the beginning of my life as a Scleroderma patient...my New Norm! I hope my own faith, personal experiences, and willingness to share with others can ease one person's fears and concerns. We all need support from time to time.
I share the frustration of having fatigue and pain and the overall lack of energy, along with fighting the emotional depression of looking in the mirror and remembering who you used to be.
If you are a Michigan Medicine Scleroderma patient and would like to meet with a Peer Mentor, please fill out our form. We will be in contact with you soon.
For more Scleroderma Stories, visit our Support our Work page.