It’s hard to believe my journey to healing from myositis began just over a year ago when I was first diagnosed. It has definitely been a challenging year full of ups and downs (but mostly downs). There have been many overwhelming days where giving up seemed so much easier than fighting – the sleepless nights, pain, hair loss, muscle deterioration, skin changes, cancer screenings, surgery, tests, appointments with rheumatology, dermatology, gynocology, gastroenterology, opthamology, pulmonology, cardiology, sleep clinic, and traveling out of town for appointments. This is the norm for anyone battling dermatomyositis. It is a life changing disease to be sure.
Most people know I have always been an active, outdoor person. When both of these things were affected, (not being able to be as active and having to avoid the sun), it really made me learn to never take for granted even the smallest blessings in life. I also had to learn how to remove the word “can’t” from my vocabulary. I’ve heard people in my myositis support groups discuss giving up on certain aspects of their life. They talk about never visiting the beach again and avoiding any outdoor activities. My response to that is that “you can’t stop living.” Yes, there are new challenges, but there are ways around it. You must press forward and still find ways to do the things you love. This is how you survive and thrive.
So, here I am a year later. I’m down 20 lbs so far (mostly prednisone weight), rashes are under control, pain is better, and I am getting more rest since starting treatment for sleep apnea. This is helping tremendously with my healing. I am starting to feel like the old Amy again. I have energy to clean my house (in small steps), mow my lawn, go hiking with Izzy, and ride my bike further. My bike rides used to be about 30 miles on average. Since I’ve been ill, the rides have been about three to four miles (which I am still grateful for). Recently, I rode 13 miles, the longest ride in over a year. My strength is coming back.
This lifechanging illness came out of nowhere and was brought on by a combination of factors, including: menopause, a virus, genetics, and stress. You could say it was the perfect storm. This is a lifelong journey and I have no intention of giving up. I have seen the benefits of persistence and patience and that health and wellbeing are definitely worth fighting for. While the mental and physical journey has been taxing, I am a firm believer that good things do come to those who wait.
Slow progress is better than no progress. The fight continues. (I am including photos from last summer to now and a photo from my most recent bike ride so you can see the progress.)
Grotton papules gone.Heliotrope rash (eyelids) and facial rash gone.Knee rashes gone.Moon face from prednisone gone.
I developed a passion for wellness after I experienced many years of health issues. Taking care of myself through exercise, healthy eating, and reducing stress, is what led me to a career in wellness. I decided I wanted to help others learn the benefits of a healthy lifestyle.
I have been the Wellness Director at Ivy Tech since 2013. I previously worked as a Health Advocate and Personal Trainer at St. Vincent Healthy Lives and prior to that was a Fitness Tech for Ivy Tech and personal trainer and group exercise instructor at the Dunigan YMCA. I also taught classes in senior living centers and conducted private personal training sessions for people of all ages.
I have two Bachelor’s degrees from USI in Communications and German. I am a certified Health & Wellness Coach through Wellcoaches and received my personal training certification through the American College of Sports Medicine. I am also Reiki Level II certified and a member of the American College of Sports Medicine® and the International Association for Worksite Health Promotion. I also have a background in mental health and certified in Adult and Youth Mental Health First Aid and completed ASIST (Applied Suicide Intervention Skills Training) and I'm a QPR Suicide Prevention Instructor. In December 2024, I graduated with a Master of Education in Student Learning and Wellbeing at the University of Missouri.
When I'm not exercising, I'm busy volunteering for several organizations including St. Vincent’s No One Dies Alone program. In 2011, I ran in the Marathon for the Cure in Washington, D.C. and raised over $6,200 towards breast cancer research. My mother, who passed away from breast cancer, was my inspiration for doing this. I also competed in several triathlons and love to travel and spend time with my 16-year old daughter, my friends, and my dog and three cats. I love animals and started a pet therapy program at Ivy Tech called Paws ’N Relax to help students manage stress and anxiety during final exams.
At Ivy Tech, we are more than just a Fitness Center. We believe in treating the body as a whole and working on body, mind, and spirit. We have programs that focus on the nine area of wellness: physical, emotional, social, spiritual, intellectual, financial, creative, environmental, and occupational. We offer a Relaxation Lounge and emWavePro Biofeedback program to help manage anxiety. Stress is a contributor to many health issues and we want to make sure you have tools to manage it better. We want to help you live a long, happy, and healthy life.
Update: In the Spring of 2023, I was diagnosed with dermatomyositis which is a rare auto-immune disorder that causes rashes and attacks the muscles. I have developed severe muscle atrophy, pain, and weakness. I am still exercising, eating healthy, and managing stress now more than ever. There is no known cause for this condition but it is treated with medication and a healthy lifestyle. I am just taking it one day at a time and continuing to help others learn how to live a healthy lifestyle.
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