Jacqueline Garcia

After returning from Sweden in July 2023, I noticed something was off. My usual walk from the train station to my home became difficult. My muscles felt weak, and I didn’t feel like myself. I thought to myself, I need to join a gym. This excess weight has to go, and exercise will be the answer. Little did I know how wrong I was.

I felt like the Tin Man from The Wizard of Oz. Where was my oil can?

I met with my primary physician and had blood work done. A few days later, I received a call telling me to go to the emergency room immediately. They told me my CK level was 20,000. What? What even is a CK?

I was admitted to the hospital and bombarded with questions. Do you run marathons? Me, I thought? They must have had the wrong patient. Do I look like a runner? Maybe I was decent in high school. Not anymore.

More bloodwork was taken, along with MRIs and ultrasounds. A muscle biopsy was done. This was serious. The doctors said it might be rhabdomyolysis. Rhabdowhat?

I was discharged with a prescription and told to find a rheumatologist. I found one right away. When the biopsy results came in, I was diagnosed with immune-mediated necrotizing myopathy (IMNM).

It was only the second week of October. Everything happened so fast.

What? When? Where? Why?

Was this caused by food? Was it environmental? I had never heard of this disease before.

That same week, I was admitted again and met with the wonderful doctors from HSS in New York City. They have a dedicated myositis team. While in the hospital, I was on a lot of medication.

The simple things, or maybe the things we take for granted, I could no longer do.

My muscle weakness worsened. I couldn’t lift my legs. Even going to the bathroom was extremely difficult. Everything became harder. My body was failing me. My immune system was aggressively attacking my muscles and causing the cells to die.

That was almost two years ago.

Today, I am on a medication regimen with Rituximab every six months, IVIG every two weeks, and azathioprine every day. And physical therapy is a must!

I also attend webinars and conferences hosted by The Myositis Association. Positive thoughts and trying to stay focused on a healthier lifestyle are also part of my plan. I refuse to be taken down mentally.

The regimen seems to be working.

Remember this: Most of your stress comes from the way you respond to life’s situations. Change your attitude, and look for the good in every experience.