- Dermatomyositis and Polymyositis
- Interviews
Agapelove's interview
How did all start?
My legs and hips began to ache and hurt in late 2015/early 2016. My PC Dr. referred me to Physical Therapy, waste of time. In the summer of 2017, I noticed a rash on my arms and chest, then on my face. I attributed to an oil I was using. After four visits,(several medications, severe pain) I was referred to the Dermatology Dept.
Do you already have a diagnosis? How long did it take you to get it?
By the second visit, an amazing Dr. tentatively diagnosed me. I was officially Diagnosed on March 6,2018.. What I now realize is that I was experiencing symptoms for several years. However, I thought they were random issues easily addressed. I needed to go to the gym, get more rest, change my diet, etc. It didn't help that initially, the Doctors didn't take enough time and care to pursue my symptoms..
For what medical specialties have you been treated? What has been the most useful specialty for your?
Really new on this Journey. None .
Still in testing phase.
What has been the most useful thing for you so far?
Not much to be honest. The Medication to keep me from having a mental meltdown.
What have been your biggest difficulties?
The diagnosis, staying positive, continuing to be the rock for my family and program I direct, the side effects of meds. , stopping my mind from thinking the worst!!
How has your social and family environment reacted? Have your social or family relationships changed?
Having really talked to nor involved anyone. My family consist of five and only one is semi-aware and my support .
What things have you stopped doing?
I changed my eating, drinking, and smoking.
What do you think about the future?
Not sure. right now I cry.
So far, which years have been the best years in your life? What have you done during them?
The years, I had my children
The years, I received my education
The years, I have been able to serve those in need.
What would you like to do if you didn’t have your condition?
I want to do all the same things.....
If you had to describe your life in a sentence, what would it be?
I have an abundance of pain, but far greater blessings and joy.
Finally, what advice would you give to a person in a similar situation?
Not sure. I am still wrapping my head around this madness.
