Each month I want to highlight someone in the MS community who is doing amazing things for themselves and their MS diagnosis!
If you’d like to be interviewed and share your story, please email me at firstname.lastname@example.org!
When were you diagnosed with MS? What was it like for you?
I was diagnosed with MS at 26. Prior to that I was very active and pretty healthy. My symptoms came on suddenly and progressed pretty rapidly over the course of a few months. I went from running half marathons, to barely able to walk down the hallway at school with my students. My vision was deteriorating, my hands and feet hurt, I was losing feeling in my right hand and leg and I was so exhausted I was sleeping through days and weekends. It took a few months of drs appointments, seeing auto immune specialists, endless blood work.. but a bunch of abnormal MRIs and a spinal tap sealed the deal. The whole experience was intense. But looking back, it really taught me how strong and resilient the body is!
What did you think was going to be the hardest part of MS? What was actually the hardest?
In the beginning, I thought that finding a medication or treatment plan would be the hardest part. The doctors appointments, testing, medication changes.. it was all a lot! I have learned over time that the hardest part of MS is not about medication or making plans. It was about finding balance, creating a new normal and setting different expectations that can make you just as happy and feel good.
Have you or are you currently taking any MS medications?
It took me about 2 years to figure out what works, but I currently receive Ocrevus infusions 2x a year. It has worked for me thus far, keeping fingers crossed!
What is the symptom you struggle the most with?
That is a toss up! I still struggle a lot with inflammation and neuropathy in my upper body and hands/feet. I always say that my neck and back feels like Im 30 going on 90. It can very be hard to sleep at times with nerve pain and muscle spasticity.
Have you made any diet changes that has helped?
I try to stick to an anti-inflammatory diet with no gluten/or dairy and try to eat as clean as I can… but would be lying if I didn’t treat myself to a spicy margarita and good meat & cheese board here and there! 🙂 I work with an amazing nutritionist who has helped me evolve my diet that helps keep my energy up, inflammation low, and consuming gut/brain healthy foods. I am still learning so much about the role diet plays and holistic ways of healing!
Have you made any lifestyle changes that has helped?
It was hard at first to have to say no, miss trips, cancel last minute on activities, but I have really learned to slow down and try to find some balance! Quality not quantity is my new life motto! I schedule quiet time for myself, practice self care, and try not to feel guilty about resting and recharging when its needed. I made these lifestyle changes and learned to take better care of myself so when I can do things.. I show up and am a better friend, sister, partner, daughter, teacher.. and cat mom! This is always a work in progress.
Was your family/spouse/friends supportive of your decisions; if not did they change their minds afterwards?
All of my family and friends let me process and do what I have felt best for my own life. My parents help me a lot My family, friends and fiance have been amazing through all of this. In the beginning I think it was difficult for people to fully understand my prognosis and what MS is, because it looks so different for everyone. But I think what has been really incredible is to see everyone learn more so they can understand what I’m going through and rally behind me. I’ve had friends come to treatments, visit me in the hospital, send care-packages, you name it. I’ve never felt alone through it all, so I feel very grateful.
What is the most impactful thing you’ve done to help your MS symptoms?
I think shifting my mindset and attitude has made the biggest impact. I’ve learned to accept what MS has brought to my life and know that MS is a part of me, but it doesn’t define me. Thats not to say I don’t have tough days. I still have a lot of challenges and have to work really hard at this.. but shifting my mindset helps me stay more positive, present and truly appreciate the days I’m feeling good!
If you could tell someone newly diagnosed one thing, what would you say?
I would say to take it one day at a time! Be gentle and patient with yourself. MS is a life-long marathon, not a sprint and it can be very easy to immediately feel defeated or overwhelmed. Listen to your body and trust your instincts because your MS is unique to you and you know it best!