In honor of MS Awareness Month, HealthCentral is sharing the stories of community members living with MS in our new #RealMSProfiles series. If you are interested in sharing your story, please answer these questions.
“Find joy and peace in the small things. Your spirit still needs to be nourished.” — Krystina E., RunningToStayAlive (Instagram)
HealthCentral: Krystina, when were you diagnosed with MS? What led to your diagnosis?
Krystina: I was diagnosed in July 2014 after having had MS symptoms for six years. I kept getting misdiagnosed. It was honestly really scary. Then things got really bad. That July, I couldn’t think or move much. I went to the ER and the doctors ordered a CAT scan. They thought they’d found a tumor, which led me to be admitted to the hospital. They ran every test they could think of. The only thing that came back positive was MS. My final diagnosis was made based on MRI and spinal puncture.
HC: How has MS impacted your life?
Krystina: MS has been a real challenge. It’s hard for me to work because of the cog fog — a real term used to describe a lowering in one’s ability to think, reason, remember, and more — can hit at any time. So I go through jobs kinda quickly. Recently I’ve lost the ability to walk for more then just a few steps. It’s hard to adjust to the loss of mobility.
HC: Have you made any conscious lifestyle changes due to MS? If so, has it affected your quality of life?
Krystina: I have made a lot of changes. I had to teach my kids, ages 5 and 11, how to be more self-sufficient. My eldest is always cooking with me, now learning everything he can. I had to stop running because I would quickly become overheated. Just recently, I started using a wheelchair.
HC: What are your greatest fears with MS?
Krystina: My greatest fear is that I will die when my children are still young, or that I won’t be able to really interact with them.
HC: What are your greatest joys with MS?
Krystina: There are no joys to having MS. The only thing I’m thankful for MS bringing to my life is the many beautiful friendships I’ve made.
HC: If your MS were an animal, what would it be and why?
Krystina: I see MS as a tiger. It’s always waiting to pounce, but you’re not sure when that’ll happen. Once it does, you know it’ll hurt.
HC: Have your goals changed since you’ve been living with MS? If so, how?
Krystina: Yes they have. I was planning on going into nursing. With cog fog, shaky hands, and now a wheelchair, that’s no longer a good option. Instead, I’m working toward a career in software development.
HC: What words of advice do you have for others in managing day-to-day life with MS?
Krystina: Get a doctor, get on medication, and stay on it. A lack of insurance has made me progress really fast. Also try to find joy and peace in the small things. Your spirit still needs to be nourished.
HC: What words of advice do you have for others in managing the future with MS?
Krystina: Look into hematopoietic stem cell transplantation (HSCT). Really explore it and know that there is hope.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.