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.
“Continue to plan your future regardless of MS.” — Jessica P., @JesswithMS
HealthCentral: Jessica, when were you diagnosed with MS? What led to your diagnosis?
Jessica: I was diagnosed after I went blind in my left eye and couldn’t keep my balance.
HC: How has MS impacted your life?
Jessica: It’s been a rollercoaster for sure. I wish that I didn’t have MS, but without being diagnosed, I wouldn’t be on the journey I am now. I’ve met wonderful people and have been able to participate in some wonderful projects. This year I am a district activist leader for my state and will be going to Washington, D.C., to advocate for MS on Capitol Hill.
HC: Have you made any conscious lifestyle changes due to MS? If so, has it affected your quality of life?
Jessica: I made the decision not to further my education. I am only able to work so many hours a week due to MS and the permanent damage it has caused. MS has been a huge financial burden to our family [so] I chose my children’s future over my own. I’m also unable to participate in every school event or sporting events. Heat and cold intolerance make it hard, as well as the overwhelming fatigue.
HC: What are your greatest fears with MS?
Jessica: Losing my vision and cognitive function.
HC: What are your greatest joys with MS?
Jessica: MS has taught my children to be empathetic toward others, not to judge a book (or person) by its cover, and to never take their health for granted. I have met many wonderful people through this journey with MS and continue to be amazed at what we all can and do accomplish.
HC: Have your goals changed since you’ve been living with MS? If so, how?
Jessica: I wanted to be a nurse practitioner. Since being diagnosed with MS, I had to channel that goal elsewhere. I would still love to go back to college and obtain my Bachelor’s of Science in Nursing degree, but I know how challenging that would be due to my MS. I’m not giving up on that goal, but I know that I wouldn’t be able to truly work as a nurse practitioner due to the demanding hours. I know that I could put my BSN degree and skill set to use elsewhere, so that’s why I still have that goal.
HC: What words of advice do you have for others in managing day-to-day life with MS?
Jessica: Never take a good day for granted. You will learn how to navigate through this journey with MS. Don’t be afraid to ask for help.
HC: What words of advice do you have for others in managing the future with MS?
Jessica: I would recommend journaling your experiences, so you are able to go back and view how you’re doing (and so you don’t forget). Continue to plan your future regardless of MS. Some people are able to do so much with MS. If MS does become an obstacle, find a way around it and strive to do something else. Seek out support so you truly know that you’re not alone in this fight.
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.