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.
Jacqui, Thank you for sharing your story. It is one of courage, bravery and mental toughness. You are one of the strongest women I know. Stay positive, keep fighting and inspiring others to do the same!!!
Fran
Jacqui,
Thank you for sharing your story. It is a story of strength, courage and perseverance. You are one of the strongest women I know. Your positivity and strength is a wonderful example for anyone going through adverse situations and how to handle them with grace. I wish you nothing but the best as you continue living and enjoying every single day!!
Fran
My Godmother, has taken on this diagnosis like the superhero she is. She has always been on of the strongest people I know. After being diagnosed, she dived into her research and has educated herself so much. I’ve gone From getting her diagnosis and not knowing anything about myositis, to now being able to explain to a stranger in full detail about this disease through all the education that the myositis association has provided. Next month we’ll be going to our second conference with them. I am so proud of you Godmommy! ❤️
I am always inspired by Jacqui’s resilience towards life and any obstacle she faces. She always has a positive outlook on life. When I heard about Jacqui’s illness, I too was like what is that? We never know what life is going to throw at us. But she handles it with such grace and doesn’t let it define her. Praying for my sistah!
Knowing you is to love you, and learning about your brave and swift response to this disease truly highlights your strength and resilience. You are an incredible role model, and reading your story has been so inspiring. Sending prayers and hugs as you continue on this journey.
Wow… thank you for sharing this. Reading everything you’ve been through, from the shock of those first symptoms to all the hospital visits and the diagnosis, I can only imagine how overwhelming and scary it must have been. What stands out to me most, though, is your strength and the way you’ve faced all of it head-on. You’ve turned something so heavy into motivation; to learn, to stay positive, to take care of yourself, and to not let it break your spirit.
I’m so proud of the way you’ve handled this journey, even when your body felt like it was failing you. That takes courage and resilience most people can’t even fathom! I know it hasn’t been easy, but you’re showing what true perseverance looks like.
I just want you to know I see your fight, your faith, and your refusal to let this define you. You’re such an inspiration, and I love you deeply. Keep holding onto that light, you’ve already come so far. ❤️
Such a beautiful soul, Jacqui. You continue to encourage others despite the challenges thrown your way. Continue shedding light on this disease with education and your story.
My dear sweet Jacqui, to know you is to love you! To be in your presence is to be inspired by your strength, faith, and devotion to God, family and friends. Your story is a testament to your resilience and determination to live fully and unabashedly. I have always been inspired by you, having met you as freshman in college. I am grateful that you continue to make inspire me and those around you. We love you for ALWAYS being you, no matter what. May God’s grace and your determination continue to guide and hold you close on this journey. You got this SIS. And we have YOU. Stay BLESSED. Love you always!
To God be the Glory!!
Won’t he do it!!
This is all I can say! I give all the praise and honor to God from whom all blessings flow. As he stated in his word Psalm 91 “God is my Refuge and my Fortress 10000 may fall by your right side but none will harm you – you will watch the punishment of the wicked”
Jacqui you are his daughter and his mighty servant You’d demonstrated your faith. Now you got this testimony that you’ve shared in this forum. More important, many can see what you witnessed and this blessing. What youve share will be an inspiration for others to believe in the power of prayer and faith.
I thank God for all he has done and continues to do for you and your beloved family.
Keep doing what you’re doing for in time the best will come as we’ve prayed it would.
With all you have been through there is not more our dear Lord will put upon you ( he will not put on you more than you can bear ) in this journey of life we can only ask for his divine mercy. You already know he always comes through!!! Hallelujah
I’m praying for a miracle as well.
Love ya
Evie
Where shall I start!!! It’s incredible how you courageously manage Myositis through the good days and not so good days and you still intentionally make an effort to help others with ALL situations!! Sharing your personal account will undoubtably encourage others. I’ve been encouraged by you as well. When I was diagnosed with MOG, a rare autoimmune disease in 2017, I did not address it with the fire that I needed to! I didn’t even bother to learn it full name! Then I experienced Jacqui’s School of Hard Knox of No Excuses and what are you going to do about it!!! Talk about taking the bull by the horns! That’s truly Jacqui’s style! I read more about MOG, had more dialogue with my doctors with a notebook in hand, joined 2 MOG support groups, being more accountable with eating healthier and just ultimately making me a priority and a doer! I’m still work in progress but staying positive , proactive, faithful and enjoying life.
Myelin Oligodendrocyte Glycoprotein- You can’t stop me! I so appreciate you Jacqui Garcia! A true Warrior and Friend!
Jacqui, it took me a while to get over my anger at learning of your illness. But your grace and strength have turned me around. Those were always your superpowers at managing difficult situations. I continue to be humbled by your “joie de vivre”.
With love and support, Fran
What an excellent story and testimony, I’ve been with you through this journey and have learned so much about Myositis from you. You are the epitomy of what a strong and resilient woman is and I am proud to call you my sister and friend.
Love you
You are brave, you are strong, you are EVERYTHING 💜
What a fighter you are!! At first we were all concerned but you always kept a positive mindset throughout your journey. Your wit, compassion, joy and spunk inspires people daily. Thank you for continuing to educate and spread awareness about Mysositis.
~Yasmeen
Thank you for sharing your story with us Aunt Jacqui. This touched my heart. You honored what you were feeling by checking in with your medical providers – such an essential step
that many people often skip over and say “I’ll be alright”. Your story inspires me to go check in on some physical concerns l’ve been ignoring. I love you.
My second mom Jacqui, I’m so proud of how well you’re doing. Living with myositis is not an easy journey, yet you continue to face it with such strength, grace, and determination. Your progress inspires everyone around you and is a true reminder of your resilience and courage. Keep shining, keep pushing forward, and always remember that you are deeply loved, supported, and celebrated. Thank you for sharing your story.
My Dear Sister in Christ, in Zetadom, in Life……Your work has just begun. You have been prepared for such a time as this. Continue forward with your head to the sky, and hands lifted praising OUR LORD and SAVIOR🙏🏾. Thank for your generous spirit in sharing not only the good but also your resilience during the seasons when they may appear not. Keep encouraging…..LOVE YOU💙
Jacqui,
Thank you for sharing such inspiring story about your journey with living myositis. What amazes me most about you is how you continue to shine with positivity. Your strength isn’t just in how you endure, but in how you choose to see the light, hope , and goodness no matter what you’re facing. Your strength and resilience is so empowering to many. Love you❤️.
Keep educating, it’s much appreciated.
Testify!!! Beautifully written and even in this you’ve continued to share your beauty and inner strength. Without a doubt you are a champion of courage and for many people who have never heard of this before. Thank you for sharing and courage to show in the face of diversity you still have strength, love, faith and happiness to go all the way!!! Stay strong Queen and always be true to yourself!!!
Thank you for sharing such a beautiful testimony. Continue to stand in faith and courage Queen and shine your light!! Blessings and strength and continued prayers always!!!!
Isaiah 41:10:
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand”.
My friend, your sharing of your trials and tribulations in this journey are inspiring and educational. You are resilient and every breath that you take exemplifies this quality.
I pray for you and your family. I am here for you. I had no knowledge of immune-mediated necrotizing myopathy (IMNM). However, I am now being continuously educated on this illness.
I see your strength. Keep holding onto faith, and you’ll get through this ❤️🙏🏾.
To my dear Jacqui,
This is such an admirable thing that you have been able to share. Always remember that we aren’t defined by life’s challenges but rather our ability to look beyond them & be a guiding light for others. You will always be that light for me & so many other’s who love & care for you deeply. I’ll will always be here for you..
Remain in God’s perfect peace & His perfect will!
“Your word is a lamp for my feet, a light on my path.”
Psalms 119:105 NIV
Xo,
Tee
Yes 💐😊🙏🏾! So happy for you! So much love! God Bless!
JACQUI your story is truly inspiring . The persistence you showed on seeking answers about your health demonstrates courage and determination. By embracing a growth mindset and choosing to face Myositis with positivity, you are not only empowering yourself but also others who maybe struggling in silence.
Your commitment to educating your self and spreading awareness is a gift to your community; reminding us all to listen closely to our bodies and advocate for our well-being. THANK YOU for sharing your journey so openly. Your strength, resilience and advocacy are a powerful reminder that even in the face of challenges, we can choose to rise, learn and inspire others. Keep up t he good work. God will continue to bless you and show and favor. 💞💞🙏🏽😘
Wow, Jacqui! Thank you for sharing and educating us on your illness. You have always been strong, an a positive force to be reckoned with! When faced with adversity you thrive, it is like fuel for you it drives you and maks you stonger. There has never been a time since i have known you that you weren’t sharing information to help others. And even through your own health crisis you are still helping. Even if someone is suffring from a diffrent ailment, your story if resilience will inspire anyone to continu to fight! Blessings sis for continued good health!
“Challenges are gifts that force us to search for a new center of gravity. Don’t fight them. Just find a new way to stand.”
-Oprah Winfrey
Love you girl💙
My sistah overcame the health Issue with the grace of God. May God continue to bless you. Enjoy your life girl!