Hi! My name is Caprice, I am a mom of two littles (4 and 2). We live just outside of Chicago in the western suburbs. I love to garden, sing, and spend time with my friends and family. I’m taking life day by day trusting and hoping in Jesus.
I was diagnosed with Necrotizing Myositis in October of 2019. After a miscarriage in September of that year I started noticing some weakness in my legs. Fast forward five weeks and I was in the hospital struggling to walk and with ck levels in the 20,000 (ck is the amount of muscle protein found in your blood). After two weeks and lots of testing I was diagnosed with Autoimmune mediated necrotizing myopathy. I was put on 60mg if steroids (hello moon face!), IVIG infusions monthly, and 100mg of Imuran. I work with both a neurologist and a rheumatologist. It was a very slow recovery and I most likely will not regain all of my strength. While many become disabled from this disease, I was blessed to regain as of now about 95% of my strength. I am stable and doing very well.
My life was completely turned upside down. I went from caring for my two babes to not being able to walk/lift/carry/cook/clean/drive. I couldn’t do anything. I was completely dependent on my husband, mom, and sister to help and for 6 months I was never alone while I slowly recovered. I went from never taking a pill in my life (other than ibuprofen or other over the counters) to having a pill box with tons of pills to take daily. I am on monthly infusions where I go for two days in a row for about five hours. They’re long draining days and leaving my kids is never easy.
Once the medicine started working and stopped the breakdown and inflammation I found that regular exercise (cardio, stretching, weight bearing) were so helpful. I gained back most of my strength and it has helped keep the pain at bay. I notice the less active I am the more pain I have.
The struggle I face now is the uncertainty of my disease. NAM is extremely rare and I have the SRP autoantibody which makes it even rarer. The doctors are going off little research and hoping I stay stable. My long term prognosis is unknown and there are many complications that come with Myositis such as cancer, lung disease, and cardiac issues.
The biggest encouragement I hold on to is that there is hope in Jesus. While I suffer and have disappointments in this life, in Revelation 21:4 He promises us this, “He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.” I hold onto the hope of Heaven and one day being free is disease.
It gives me hope.
Find Caprice | @capricesuzanne