Don’t Be Sick, Be Strong
by Guest Author, Heather Ashley
I was your average 21 year old girl, going to school and focusing on starting a new life. I had always loved exercising, dancing, and spending time with friends and family. My main stress was trying to maintain good grades in order to graduate with honors. Of course at this time I also thought finding a great boyfriend couldn’t hurt (who wouldn’t). However, little did I know my life was going to completely turn around.
I wound up having a severe allergic reaction to hair dye. My scalp turned bright red to the point where it was almost purple. After having gone to the doctor I was reassured that I was only dealing with an allergy and to take benadryl and drink a lot of water. My hair started falling out in fistfuls, a young woman’s nightmare. Lucky for me I had found the most amazing man around that time and he told me I could lose every hair on my head and he would still adore me.
After a few months, I knew something was terribly wrong. I hadn’t been able to lift my arms up to my head, making it difficult to wash or brush my hair and I was having a hard time walking up stairs. I didn’t know what was happening to me. Not to mention, I had a bright red rash on my eyelids, my chest, and my knuckles. I woke up one morning and literally felt like I had been hit by a bus. I had a hard time physically pushing myself out of bed. My muscles were aching and I knew I had to go see the doctor again. The doctor immediately sent me to see the dermatologist the next week. I was so scared. I know any of you out there who have dealt with something similar, or have seen a loved one dealing with something like this you can relate to the fear of the unknown. I felt like I was deteriorating and I could not believe that it was just an allergic reaction any longer. (In the picture if you look at my neck/chest area you can see where the rash had developed.)
Once I was at the dermatologist, the doctor came in, took one look at me and said “I think this is dermatomyositis, I need to go get someone” She rushed out of the room and I felt like I was swallowing knives. Dermato-what? I had never heard of this before. How serious was it? What was it? I felt like I was spinning out of control. The doctor rushed back in with her counterpart and they started taking pictures of my knuckles, my eyelids, and my chest. The doctor stepped back for a minute and explained that dermatomyositis was a rare muscle and autoimmune disease. She proceeded to tell me that my body attacks and destroys healthy tissue. The doctor told me I had to be referred to a rheumatologist in order to properly diagnose me. However, she also told me that since I was so young there was a chance that this disease could potentially be put into remission within a few years of medication. Also, I found out that there is a one our of three chance that if it does go into remission I may never have to deal with it again. That was motivation enough for me. The idea of disease, however, struck me as devastation. I never thought in a million years that I would be diagnosed at then age 22 with a serious disease. Little did I know, I hadn’t even dealt with anything yet. In my near future I was in for a lot more than I had bargained for…
Even though a diagnosis of myositis may not be convenient, and may alter your life’s path, make sure it alters it for the better. Find that something you truly believe in and don’t let myositis get in the way.
To make a long story shorter, I am currently 26 years old and I am still, unfortunately, dealing with dermatomyositis. I have almost been off of medication and near remission, but my disease seems to flare anytime I catch a virus. For instance, I had strep throat and was thrown into a flare. My disease (I am assuming this may be due to the fact that it took so long to diagnose) is quite severe, so when I flare I get immediate swelling and muscle loss and need to be placed on prednisone. I have experienced every side effect prednisone has to offer, however, avascular necrosis in both hips and both knees causing me to be in a wheelchair on a couple of occasions, oral thrush, added joint pain, irritability, etc. I am still hoping that finding the root cause of my condition could potentially put me into remission for good.
Even though I have dealt with daily struggles, I would never have been the person I am today if it wasn’t for this diagnosis. I have learned so much about myself, and what is truly important to me. I have the most amazing support group in my family, my boyfriend (yes it is the same one who has stuck by my side through and through!), friends, and my team of doctors.
Hopefully in the future, myositis will be so well recognized that at the first sign or symptom the doctors will know immediately what to do in order to diagnose and treat this disease. If knowledge and awareness of this condition can reach out to those who can do something about it, and if these stories can help even one person get a faster diagnosis, it is all worth it.
Even though a diagnosis of myositis may not be convenient, and may alter your life’s path, make sure it alters it for the better. Find that something you truly believe in and don’t let myositis get in the way. I currently want to eventually start my own business that could help others who are facing similar challenges (I am thinking maybe yoga therapy?). That dream may still seem far away, but I will make all of the steps I need to get there. Don’t be sick, be strong.
Tags: myositismyositis awareness