by Hannah Berner
The Home T is committed to raising money for multiple sclerosis (MS) research at the National Multiple Sclerosis Society, but we also want to help raise awareness about the disease and how it impacts people.
This interview is part of an ongoing series where we talk to members of The Home T community that are impacted by multiple sclerosis. Today, we’re going to hear from Taylor.
We first met Taylor on Twitter when she kindly sent us a photo of her at The Beat MS Dance Walk wearing a Texas Home T! We immediately reached out to learn more about her journey and her favorite ice cream.
What state do you call home?
Texas born and raised!
When did you learn you had multiple sclerosis, and do you have relapsing remitting or progressive?
In April 2013, I found out I had relapsing-remitting MS at the tender age of 22. It actually took me 9 months to discover I had it after what I now know was my first “relapse.” To see the full story, you can check out my blog. It was by posting this blog on Facebook in December of 2013, that I was able to share my story for essentially the world to see, as I hid this from even my closest friends for 7 hard months.
How has it impacted your life the most?
While I am doing really well right now, there were definitely some frustrating/discouraging times between when I was first diagnosed to now, trying to figure out which medicines and treatments were right for me through trial and error. I am JCV+ but am going on my 13th round of Tysabri Infusions. It has enabled to fear less and live more.
If I had to pick one thing though, my biggest complaint that I haven’t quite been able to grasp (maybe ever), is getting a GREAT night sleep. I need to do better about shutting my brain off of “work mode”, being less anxious and allowing myself to relax more. Luckily though, I still have great energy and attentiveness throughout the day, which may be one common aspect that can be a struggle for a lot of people with MS.
What has multiple sclerosis helped you learn about yourself?
It has taught me that I am much more in control of this than what my MRI scans may depict. My neurologist once told me that my MRI scans vs. the way I am doing and feeling don’t necessarily match up. I have learned that the mind is a powerful thing, and that a lot of overcoming something is through having a positive mentality.
If I tell myself that I can do something and to not give up, I can do it. Granted, running those 5 mile run in the hot, humid Texas heat may occasionally give me tingly sensations, I know that it will eventually subside and that I will be okay.
What’s one thing those that don’t have multiple sclerosis should know about it?
They should know that this disease is SO different between person to person. What one person may experience, another person may never. They should also know there are different types and stages of this disease.
I wish that when telling people I have MS, that their first assumption or reaction isn’t nervousness, as with each day passing, we are hopefully one step closer to finding a cure. There has already been so much progress made through research, and for the majority of people living with MS, this disease is very manageable.
What’s your favorite flavor of ice cream?
Mint chocolate chip! Yummm.. now I want some ice cream.
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by Jessy Segal
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