By Jacqui 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 Hospital for Special Surgery 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 four 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.
Jacqui Garcia lives in Long Island, New York with her family and dog. She is a retired NYC Supervising Probation Officer and presently a travel agent.
Thank you for your story. You have educated me on this mysterious disease called myositis.
This is my Sister friend and I pray for her and her family daily! Jacqui’s journey hasn’t been easy but thank God it is becoming manage day by day! In addition to what she said about having a positive attitude; having a strong group of friends to support you when you at are at your worst is important as well! Jacqui has a strong network of friends and when she calls we come to her side!
I’m so grateful you found The Myositis Association and the dedicated team at HSS—having that space for research and emotional support makes all the difference. Knowing you’re not alone in this journey offers real comfort and strength.
You are incredibly strong, Jacqui. Your resilience—facing sudden diagnosis, hospitalizations, and the vast unknown of IMNM—while continuing to fight with positive thought and action is truly inspiring. You’ve taken control through treatment, therapy, and community involvement, showing immense courage every step of the way.
I’m truly honored to be learning alongside you on this journey. Your determination and attitude illuminate the path for the rest of us. Love you, JacJac.
❤️ you woman. If anyone can keep a positive mind set it is you. On the days you feel weak remember God, your family and friends got you. Whatever you need.
What a great story of resilience. Despite your diagnosis, you have continued to keep your spirit of positivity and hard work. I am proud of you and the work you have done with regard to all of your ups and downs with Myositis. Keep it up my Sister and continue to be the fighter that you are!! 💖
Thank you for sharing your testimony. I had never heard of MNM until recently. Your perspective and strength is inspiring!
-A
Awesome testimony. Even in the midst of your illness you were able to keep a positive outlook. As I am reminded of a quote: Life is 10% of what happens to you and 90% of how we react to it.
This is an amazing outlook from an amazing woman. Not everyone would be able to tell their story with such grace and positivity. I commend you for your bravery and for putting your story out there for some to be educated and others to be supported. I know the road was not easy but you chose to be positive in an unknown situation. I thank God things have turned the other direction and they have found a regimen to help you enjoy your already fabulous life. God has got you covered!
Amazing testimony Jacqui!!! So well written with love, humor, humility, faith, wisdom and compassion. Even in the midst of your medical challenges, which I am still processing and trying to understand better, you reign as a Queen and someone who has said to this disease and the world “still I rise”! Someone who always stands out, makes an impact on the world, and sends a message that not only shares your journey but sends inspiration to those who are faced with this illness and those who love them and support them through this journey. Love you sis ❤️❤️❤️❤️❤️❤️ and having you in my life close to 40 years has been profoundly rewarding and we got many more years to go🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾Praying for you and the family everyday. You got this!!!!! Love 💕 you and congratulations on being featured. You deserve this.
Thank you for sharing your story. It’s powerful and really eye opening. I didn’t know much about Myositis before reading this, and your experience helped me better understand what it’s like to live with such a rare condition. The way you described what you went through makes it clear how serious and life changing this disease can be. It’s great that you’ve shared this your openness not only educates others but also gives more awareness to something many people have never even heard of.
Amazing testimony! It’s a true testament of your positivity and resilience! I remember when you told me the diagnosis…Myositis? Never heard of it and I remember you telling me there was an “necrotizing” element, the worse type, but through it all, you have remained your positive, insightful self! I remember you said you’d never let this disease win and never let it take you out of your character! Even on days when you might feel a little bit off, you’re still the same Jacqui Garcia. Blessings abound! #stillgrateful
What can I say about this amazing woman whom I call my daughter from another mother. I have know Jacqui for over 30 years. She is a true warrior, a woman of God and of strong faith. The word I can’t is not in her vocabulary . I pray for you that God continues to strengthen you everyday, touching and healing your body. I am so thankful that you did your research and didn’t settle for I can’t beat this but I can. God Bless now and always Mucho Love always.
Thank you 🙏🏾 for sharing your story. You are such an inspiration. When you told me your diagnosis, I was like what? How do you spell that? While you were talking, I was googling Myositis. You have educated me so much. Your journey has been filled with ups and downs; however, you have never took on the mentality of self pity. Your resilience, positivity, dedication to educating yourself and those around you on Myositis is just a testament of who you are. Keeping you and your family in my thoughts and Prayers. Love you 😘 much.
Such a strong dedicated individual. Keeping positive as you have always done and never let anything stop you from finding a solution. Your health is the most important factor in the days moving forward and you are just the one to fight to the finish. God is King. I love your determination in spite of the difficult challenge. You will be victorious.
Jacqui thank you for your testimony. You are and will always be a fighter. Your strength and positive attitude are a unique and welcomed blessing. May your coverage be strong and lasting. Thank you for being an inspiration to so many here and all around you.
Your story was inspiring. I know so well about the struggles and trying to live a better mobility lifestyle in a so active non-stop world, especially in New York. Find whatever activity to keep you moving and stay stress-free. Never stop moving or you will lose mobility as a healthy person or not. Living happiness in all circumstances and strive for greatness. Contine to surround yourself with positivity and get rid of anything that is negative. 21 yrs with dermatomyositis and I’m living my best life ever swimming, dancing and now floor exercising. Just don’t give in or give up. 💙🙏🏿🩵
WOW! What an amazing story! You inspire each and everyone of us with your perseverance. You are a guiding light with your wisdom, mental strength, soul, faith, and humor to get through anything that life puts in your way. May God bless you always.