Living in the present

July 23, 2025July 23, 2025 Category: Care Partner Stories

By Kristin Hicks

Kristin Hicks’s husband, Troy, lives with inclusion body myositis. Thank you to Kristin for sharing this snippet of life with myositis.

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

I am getting ready to start my 30th year as an elementary school teacher. I am currently a teacher librarian in a K-4 building. For a fun little side gig, I am a consultant with Pampered Chef, a company that offers kitchen tools, food products, and cookbooks through online and in-home sales.

What was you or your loved one’s first myositis symptom?

My husband, Troy, noticed something was not right when he started having trouble getting up off of the floor and climbing stairs. There was also a physical difference in the appearance of his thighs.

How long did it take to receive an accurate diagnosis?

Troy was first diagnosed with polymyositis in October of 2017. This diagnosis came pretty quickly after seeking medical help for his symptoms. After several unsuccessful attempts to treat symptoms of polymyositis, we decided to try to get an appointment at the Mayo Clinic. Within minutes of seeing a doctor there, he was given the news that he probably had IBM. With confirmation through a muscle biopsy, he was diagnosed with IBM in June of 2022.

How has myositis affected your life?

Troy’s IBM has affected his life in so many ways! While we are lucky that he can still walk and do things independently, it has definitely taken a toll. He is sore every day. He has always been very athletic and cannot be physically active like he used to be. We find ourselves having to take note when we go places: Are there stairs? Is there an elevator? How much walking is involved? Do we need to get tickets in the handicapped section? Basically, we can’t do some things that we used to do together, and we always have to be aware of limitations when we make plans.

One thing that Troy hates most of all is that he has missed out on being able to do things with our youngest son. This disease not only affects physical health, but it also affects mental and emotional health as well.

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

No one in our family had heard of inclusion body myositis, including us. So there was a lot of learning and explaining in the beginning. Our families are amazing and great to have in our corner.

How does your care team of doctors, specialists, therapist, infusion providers, etcetera help you manage this disease?

I am thankful that Troy’s primary care doctor did not mess around. He did not hesitate to refer him to a neurologist right away. The neurologist acted quickly in trying different treatments for polymyositis, when they thought that’s what it was. After Troy was diagnosed with IBM, his neurologist referred him to a specialist in IBM. I don’t feel like any egos got in the way of him getting the care that he has needed.

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

I wish that every medical student was informed about all the different types of myositis and at least had some kind of training on diagnosing them. I have heard about some cases where the patient didn’t get a proper diagnosis for months or years! One of Troy’s doctors stated that he remembers hearing about myositis during medical school, but the time spent on it was very brief.

I also think it is important for doctors to realize when something is beyond their field of understanding so they can send patients along to someone else who can help them when needed.

How has TMA been helpful to you and your family?

My husband and I have attended the past two TMA conferences. (We are planning to go this year too!) The conference is so helpful! We learn, get new ideas, and see that we are not alone in facing this disease.

Troy also attends TMA’s Men Managing Myositis and Military Veterans with Myositis virtual affinity group meetings. Those calls provide a platform to be able to communicate and share experiences with people who have the same disease.

Describe how you have advocated for the myositis community, and for all those on a rare medical journey.

I share a lot of TMA’s posts on social media, especially during May (Myositis Awareness Month) or World Myositis Day in September.

I also hosted a fundraiser for TMA last summer. I am a Pampered Chef consultant, and every year the company offers double funds on fundraising parties during the summer. I decided to run a fundraising party for TMA, and 30% of all sales (along with my commission) were donated to TMA. It was such a success that I’m hosting another Pampered Chef fundraiser this summer.

I think it’s important to raise awareness about this disease and the people suffering from it. And I think it’s important to support research to help find ways to treat and eventually cure it!

As a part of TMA’s Military Veterans with Myositis, Troy is working with other members to compose a letter to our Indiana state representative to get a proclamation for May as Myositis Awareness Month.

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?

Troy’s advice is to slow down and listen to your body. It will let you know what you can and cannot do. He believes that working out on a daily basis with light to moderate weight is so important in maintaining good muscle. He recently has incorporated water aerobics and swimming, which have allowed him to exercise at a higher intensity due to minimizing impact and muscle soreness.

Troy has also recently found an Ankle-Foot Orthosis (a brace that supports the ankle and foot for people with mobility issues) that works really well for him. It is lightweight, less “clunky,” and a lot more comfortable than his previous one. I am glad that he is finally wearing one consistently.

What words of encouragement do you want to share with others on a journey with myositis?

For my own mental and emotional health, I want to live in the present, tackle the problems we are faced with right now, and not worry about what the future might hold. I’ve always been an optimist, so maybe there will be treatment or a cure before Troy’s symptoms get really bad!

You can help Kristin raise funds to TMA through her Pampered Chef fundraiser. Shop now through August 15 and a portion of the sales will be donated to TMA.  

Donate directly to TMA