Missouri, USA
When were you diagnosed with MS? September 2000
What type of MS do you have? Relapsing-Remitting MS (RRMS)
#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?
After more than two years, I finally received a diagnosis. Instead of feeling upset, I felt relieved that someone had pieced together the puzzle and listened to me without judgment. I was only 20 years old and there weren't many instances of young people being diagnosed with MS, at the time. I recall receiving physical therapy, a course of steroids, and brochures featuring individuals using wheelchairs or mobility devices on the front.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
The primary symptoms I experience are moderate to severe nerve pain, numbness, spasticity, and fatigue. When I received my diagnosis, infusions were not yet available, and interferon shots were still in their early stages. The neurologist suggested that, due to my age, I attempt to manage symptoms using a variety of prescription medications. I have chosen not to use any disease-modifying therapies (DMTs) to this day. However, staying active is crucial. I began participating in CrossFit towards the end of 2014 and it has helped me maintain my health and agility. I also have a weekly appointment with a physical therapist to help me stay mobile.
#3: Who/What has been your most important support system?
My parents have been my strongest advocates, since day one. Over 23 years ago, I faced a great deal of medical gaslighting while trying to obtain a diagnosis as a young person. Without my parents fighting for me, I doubt I would have received a proper diagnosis or it would have taken much longer. Beyond that, I have a group of close friends at my gym who consistently support me. They go out of their way to cheer me on with my fitness goals and are always interested in how I adapt my workouts.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
No.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I have a very regular gym schedule and I gain a lot of motivation from working out, logging my stats, and seeing progress. The gym also allows me time to socialize and receive support from friends who know how hard I work to stay moving. I also, work from home on Fridays. My employer is very flexible with all employees when it comes to getting work done. In addition, as a hobby, I ruck (walk with a weighted backpack) and that has allowed me to keep moving and clear my head at the same time.
#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?
I wasted a lot of time early on, either assuming I couldn't do things or I shouldn't do things. I also assumed I should always, listen to medical professionals verbatim. However, what I've learned first and foremost, is that you have to be in charge of your own care and advocate for yourself. There are so many doctors that just want to put everyone with MS on the same treatment plans and each one of us is different. Our disease progression is different, our pain tolerance is different, our symptoms are different and most importantly, our motivation levels are different. Don't allow yourself to be okay with the status quo. Because people with MS are capable of more than society or medical professionals realize! Bottom line, if you had goals before your diagnosis, it doesn't mean you can't reach them. You might just need to find another way to accomplish them. Sometimes, if you have to change your goals you, end up in a better place. I changed my entire career path, several years into my diagnosis and it allowed me to find a very rewarding career. A career, I never would have thought of, without MS!
#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?
No. Although I don't have a specific mission or business, I make it a point to raise awareness about multiple sclerosis.
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