Rose shares her #MyositisLIFE, “A good yarn,” how knitting kept her sane.for Myositis Awareness Month and MSU’s #MyositisLIFE project.
My journey started in 2013. I was in the best physical shape in a long time. I started each morning at the gym by 5:30. I had a fast paced job selling pharmaceuticals. Something was just not right with my body. My muscles started to fail me and I felt so tired all the time. Then finally a doctor ordered some blood work and my world changed on a dime. I went from seeing the doctor once a year to enrolling in the frequent flyer program. I was lucky to meet a wonderful rheumatologist at John Hopkins who told me I was really sick but we will get through this together. I was diagnosed in August 2014 and my Mom passed away in September.
Looking back I cannot believe I had the strength (no pun intended) to make it through that dark time. I turned to my hobby of knitting to be my lifeline. My local knit shop Black Sheep Yarn Shop had just started a knit a long called Hitofude when I was trying to find out what was wrong with me. It took me three months to finish and represents all my worries and anxiety being transformed into a beautiful garment made of merino wool and cashmere.
To keep my illness in perspective, I try to be aware that others have their own troubles. My former boss called me with news that her sister’s son had died at the young age of 23. I found out his favorite colors and made her a prayer shawl. It made me feel useful to help Caroline give her sister some comfort. Not only did face my stress and depression with getting a life altering disease, but I was able to help another get through theirs as well.
I had started a tradition of making Irish sweaters for my nephews as they graduated college. I had just finished the O’Neill pattern for my nephew Joe when I was initially diagnosed. I later made the Clark pattern for Will. More importantly I created one with the McNamara pattern for my husband Bill. He has been my rock through my journey. He had lived up to the vow of in sickness and in health. I am a lucky girl.
A big part of my healing has taken place at the Johns Hopkins Bayview. Between my rheumatologist Dr. Grader-Beck and the nurses and tech and the infusion center, they have all played a role in my recovery. One of the ways I pass the time getting my IVIG is by knitting. I have made items ranging from 
cowls, socks and gloves to hats for them to show my appreciation to the wonderful care they have given me.
Knitting allows me to still be productive and give to others in the process. I had a hard time having to retire from my career due to Myositis. I was used to living a fast paced life. Even though the fatigue made me spend most of my time at home, my one highlight of the week was Tuesday night at my knit shop. The girls there kept my spirits high and since many of them are nurses, they knew the challenges I was facing. The silver lining with my Myositis journey is that it has given me time to enjoy the fiber arts world.
Author: Rose
Tags: myositis awareness myositis story
I am not sure if this is the place to respond to Rose – but I want to thank her for sharing her story. I was diagnosed with IBM in November, 2018 – and my love of knitting is what has kept me going, even as I experienced a major relapse I love that my mind and fingers still work and I can still be creative!
Thank you, Rose!