The Home T is committed to raising money for multiple sclerosis research, but we also find it very important to raise awareness about the disease.
We first met Amber after she purchased a Home at the Castle hoodie! She sent us the sweetest email to thank us for our donation to multiple sclerosis research and admitted that she was just diagnosed with the disease in February. We wanted to hear more about her story:
1. What state do you call home?
2. What does "home" mean to you?
To me, home means somewhere you are surrounded by unconditional love and those you care about. Home is not about the physical roof over your head or the state boundaries by which you live but the people who fill that space and make every day a new adventure.
3. When did you learn you had multiple sclerosis? Do you have relapsing remitting or progressive?
In January of this year (2016) I began to feel a whole host of symptoms such as getting dizzy, stumbling, slurred speech, exhaustion and terrible headaches. The best way I can describe it is that I felt like had too many glasses of wine and hadn’t even had a sip. Luckily, my primary doctor took my symptoms seriously and respected the fact that I just knew something wasn’t right. An MRI showed an abundance of lesions on my brain in varying sizes and locations. A spinal tap by my neurologist confirmed I have relapsing remitting multiple sclerosis. I was officially diagnosed February 18th.
4. What has multiple sclerosis helped you learn about yourself?
Multiple sclerosis has taught me that I am stronger than I ever thought I was capable of being. I am a wife, a mom of the most adorable almost 2 year old boy, I work full time in public relations, I am in graduate school getting my Master’s degree with Georgetown University, and I am a fighter. I try to never let my MS keep me from doing things.
I prefer to have control over everything and when I realized I couldn’t control my MS, I learned that I could control my attitude. I decided early on that I would not let MS define me but fight for a cure instead. I participated in the National MS Society’s Muckfest MS, a 5K mud run, and raised $1,200 in June and I am already signed up to Muck again in June 2017. I volunteered at the MS Society City to Shore Bike MS Ride in September and was my company’s team captain. I am already registered to ride the 80 miles from Cherry Hill, N.J. to Ocean City, N.J. in September 2017. This is how I have learned to control my MS…fight.
I've also learned that I don't know what I would do without my family and friends. My husband Erik is my strength on a daily basis, holding my hand through the hardest times and always keeping me laughing. My parents and brothers rallied around me during my diagnosis, never making me go through it alone. I don't think the neurologist knew how to handle 6 people in the exam room. My friends have been more supportive than I could ever ask for, especially my best friend Amber who is an Occupational Therapist and see the complexities of MS all the time. I am more blessed then I could ever describe to have these people in my life.
5. What's one thing those that people who don't have multiple sclerosis should know about it?
People should understand that MS is different for everyone and that no two people will have the same symptoms or lesions. Just because someone utilizes mobility assistance such as a wheel chair doesn’t necessarily mean I need to or will need to moving forward. And most importantly, just because I look okay, doesn’t mean I am okay. MS often is not outward facing and people often think that since they can’t see your symptoms you must okay. Unless you are with me all day, you may never see one of my symptoms but they definitely exist. You may not be there the moment I fall, or get vertigo, or my speech slurs, or my hands tremble but know that it is happening.
6. Do you have any advice for those living with MS?
Don’t let MS define you but don’t close up about it either. Many people hide their diagnosis and believe people will treat them differently. When you are open about your diagnosis you raise awareness. I can’t even begin to count the number of times I have explained what MS is since February. Speak only to the extent you feel comfortable but know that not everyone will just judge and treat you differently.
7. What's your favorite ice cream?
Chocolate chip cookie dough.
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