Myositis Awareness Month is a time to tell the story of your myositis journey. Here are some sample questions everyone can use to prompt your thoughts about how myositis has affected your life. Then you can go out and tell the world what myositis is and how it affects you!

Thanks to TMA member Chrysta Johnson for sharing her journey with polymyositis (PM) in this way with us.

  • What is a fun fact about you that has nothing to do with myositis?

I am an LPN and have been an Army Reservist for 24 years. I am currently attending school to complete my associate degree in nursing to become an RN.

  • What is your most useful hint, hack, or tip for navigating daily life with myositis? Do you have a specific self-care practice or resource that you recommend to others?

I try to exercise 3-4 days a week and try to eat a clean diet. My goal is to remove meat from my diet by the end of December. I also exercise and drink lots of water, pineapple juice, and apple juice.

  • What was your first myositis symptom?

My eyelids became red and puffy, and my leg muscles were sore.

  • How long did it take you to receive an accurate diagnosis?

It took two years before I was diagnosed with polymyositis (PM).

  • How has myositis affected your life?

I am not working as a nurse/drilling reservist right now, and I had to withdraw from school in 2023. I was in a wheelchair and using a walker and cane, so it was hard for me to do my duties as a nurse and a soldier at the time. I am still attending PT/OT twice a week to help restore all my muscle strength and get back to where I was. I am almost there.

  • How has your family/community supported you on your myositis journey?

My family helped assist with daily activities when it was difficult for me. They encouraged me and just prayed for me.

My mom took me to doctors’ appointments when I was too weak to drive. She helped me with dressing, bathing, eating—all the things I couldn’t do by myself at the time. My dad would pray for me and anoint me with oil, and he was the one who would life me out of bed or into the chair and help me get situated.

The Veterans Association (VA) has really been a life saver. They paid for all my community-based care (rheumatology, PT/OT) since September 2023. They make it possible for me to get better without making it a hassle. For example, they provided valuable information to make sure I got a handicapped sticker for my car.

My mom would drive me to school for the first few months and just be there since I had trouble getting up from low spots like the toilet. My cousin who is a nurse would get my medical reports from the doctor and translate them into layman’s terms for my mom. She would also call the hospitals and rehab center to make sure I got what I needed.

Dr. Elijah Owens from the Medical University of South Carolina (MUSC) in Florence diagnosed me in March 2023. Prizma Hospital in Greenville, SC and Piedmont Post Acute rehab facility in Piedmont, SC both had a good team of nurses, doctors, and CNAs who encouraged me and gave me the best care. I had one special CNA at MUSC Florence, Mrs. Shirley, who took great care of me.

I had a lot of people praying for me and encouraging me. Most of all, so many family and church members would look out for my two boys. The pastor would check on me and pray for me regularly, and everyone would just make sure my kids were handling being away from their mom for so long.

My kids’ grandmother and aunt would wash my clothes and come visit me at the post-acute care facility. My pastor and church family visited me, prayed for me, and checked on my boys. My aunt, who is a schoolteacher, along with my cousin and her daughter would help the boys with schoolwork. My sister took the kids school shopping when I was in the hospital.

I also had many relatives come and spend quality time with me. One cousin stayed every night I was in the hospital at MUSC. Others spent time praying with me, organizing my flowers, or were just there for me. That meant more to me than anything. I will be forever grateful for all of these people!

  • How does your care team of doctors, specialists, infusion providers, etc. help you manage your disease?

I currently take CellCept twice a day and am tapering off of steroids. I am currently on 10 mg of prednisone daily, and in March 2024 I started intravenous immune globulin (IVIG) infusion therapy every four weeks. The goal is to taper off the steroids and eventually start spacing out the IVIG infusions to possibly get off of it.

I also get labs drawn every month. My creatine kinase numbers continue to decrease. I still receive outpatient occupational and physical therapy, which helps me with activities of daily living, ambulation, and strengthening my muscles so I can continuously get stronger and get back to myself.

  • What is one thing you wish every medical student knew about myositis, before they entered practice as a physician?

I want them to fully assess a patient and not just assume its allergies or something benign. They should draw bloodwork and listen to the patient’s concerns. This is a rare disease, and it shows up differently for everyone. I just wish they could pay attention and narrow down the cause of the symptoms.

  • How has TMA been helpful to you and your family?

TMA has provided a wealth of information. It’s been very helpful to hear other people’s stories. I plan on getting more involved in the organization as my health progresses.

  • What words of encouragement do you want to share with others who have forms of myositis?

    Keep pushing, praying, and having positive people in your corner. Do not give up no matter what it looks like. Keep pushing. Stay positive. When you are going through it, all you see is the pain and struggle, but when you get through it on the other side, all of the things you went through will be worth it once you see how far you have come!

    5 comments on “Chrysta Johnson”

    1. 1
      Debra ward on May 7, 2024

      Crysta indeed it has been a long journey for you and I thank God for giving you the strength to endure. Thank you so very much for sharing your story to us and I thank God for your miracle. You have so much life ahead of you and I know you will continue to press forward to spread awareness to all. We love you always! Debra

    2. 2
      Alicia Lowther on May 14, 2024

      Chrysta, Thank you for your service. What a wonderful support team you have through family and Church. Love that your circle not only loves and look out for you, but they are also there for your two sons. Thanks for sharing your story.

      1. 3
        Anna Marie Grant on May 26, 2024

        Thank You for sharing your Story. God is So Good. He Has Moved So Many Mountains Out of Our Way. He gives us Strength like No other. Love You My Precious and I Thank God for Your Encouraging and Loving Spirit. Blessings to You and Your Family.

    3. 4
      Ashley Page (cousin) on May 25, 2024

      I finally sat down to read and process this. You are a blessing and such a sweetheart. Thank you for allowing me to help you on your journey. Love you.

    4. 5
      Ashley Page (cousin) on May 25, 2024

      Truly was a honor and pleasure helping you. As my cousin I didn’t mind you are such a blessing in our family. You always helping others and always doing for others always you put others before yourself so it was my time and my duty to help you along your journey, so my advice to you is continue keeping your head up always keep God first. Continue to smile and finish up school. You got this.

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