By Dorothy Vetrano
I was diagnosed with dermatomyositis (DM) almost four years ago. Since my journey began, I’ve learned a few coping strategies but it all boils down to one word…
A.S.K. – Accept, Seek, and Knowledge
Accept – You may not want to, but it’s so important to accept this new normal so you can learn to live a productive and good life.
Be in the moment and feel whatever emotion that happens to you that day. Don’t avoid the emotion. It’s okay to cry, get angry, become upset. But don’t stay in the negative emotion for too long. Find the strength to move on.
Which leads to…
Seek – Look for ways that will help your overall attitude and wellbeing of living with myositis.
For me, I seek prayer every morning and every evening, thankful for another day. I seek daily exercise (cardio, weight bearing activities, and more importantly yoga). I seek better eating habits by shopping the perimeter of the grocery store and avoiding the middle aisles where less healthy foods tend to be found. I seek a restful sleep; doing a ten-minute yoga practice at night helps. Finally, I seek volunteering; helping others takes my mind off my current health situation by turning it into something positive and productive.
Knowledge – Understanding is powerful! We need to arm ourselves with enough knowledge about myositis so we can become active participants in our medical care. Make yourself a myositis toolbox! Mine is a binder with tabs for each healthcare practitioner I see; I have one for my PCP, rheumatologist, gastroenterologist, endocrinologist, dermatologist, and OB/GYN. Within each section are my notes for each visit and copies of any recent lab work so I can share with all my doctors so no one orders same tests. My doctors love and even laugh a little when I show up to my appointment with my big purple binder! They love how it’s organized and efficient it is for our visits. Get to know your doctors and question them if you don’t understand or agree. This is your health, and everyone needs to be on your team.
Dorothy Vetrano considers herself to be a DM newbie and grateful that she’s doing pretty well overall. She lives in Houston, TX with her loving and supportive husband and two four-legged babies. She’s a teacher of students with visual impairments who has worked with the visually impaired for the past 32 years.