My Journey with Multiple Sclerosis
Of the more than 2.3 million people worldwide who are diagnosed with MS, I am only one story. I feel my story is one of many that need to be shared. When we share the great adventures of our everyday lives, we can encourage and inspire others.
I stand here today because I am a proud woman with MS. I am proud that I have been able to find my voice through all my struggles. I am proud that I have learned to advocate for myself in a world where the medical field has been stretched far too thin.
I was born and raised right here in Buffalo, New York.
I am a wife to my biggest supporter. My husband has yet to miss an MRI, an infusion, or any appointment that is MS related. He is always by my side fighting this battle. I am a mother to three children; Gavin, Stella, and Shae. Ages 11, 9 and 7. They are our world. I was a 7th grade math teacher for 18 amazing years before switching my career to a full-time content creator. I am a daughter, a daughter-in-law, a sister, a twin, a friend, and woman living with an incurable and unpredictable disease.
My passions have always included being active, working out and nutrition. I believe these passions have ultimately helped me get to where I am today in my battle with MS.
The support I receive from my family, friends, and faith, enables me to keep fighting hard.
Having MS is not within my power, but what is within my power is refusing to let it gain the upper hand.
“You will never walk alone” became my mantra in the early days of my diagnosis, and it continues to be paramount in my mind over two years later.
February 23, 2016 was my official diagnosis of MS. Deep down, I knew I had it. It was the spinal tap and MRI that confirmed what I had already knew.
Just two short weeks after giving birth to my third child, I woke up with numb fingers, numb feet, and numbness around my chest. In my mind, my chiropractor just needed to adjust me. I was seeing him regularly for back problems from a previous car accident. I am so thankful that he didn’t adjust me that day. He sat me down, explained that what was happening might be a little more serious than an adjustment. He told me to make an appointment with a neurologist as soon as possible. I walked away confused, but realized my symptoms needed to be addressed right away.
My initial neurology appointment did not go as well as I had planned. I was told I had post partum anxiety and to take some xanax when needed. Ummm… what new mom doesn’t have a little postpartum anxiety after giving birth? Especially with 3 kids ages 4, 2, and a newborn!
They were the experts so I trusted in them and walked out the door. I decided that I needed to give it some time.
These were some of my darkest days of my life. Panic attacks, night terrors, scared to fall asleep for fear of not waking up. Spending most of my days in complete fear. Fear that I was going to die. Was it a tumor, cancer, leukemia. You name it, I thought I had it.
While I was going down the black hole of the Internet trying to learn about MS, I found myself getting frustrated. I couldn’t totally grasp what I was reading, and the stuff I did scared me.
I just knew that I didn’t want to die. I wanted to stay as healthy as I can and provide for my family.
Deep down I knew it was more than anxiety. I knew my body so well. Something wasn’t right. I just needed something more to prove to them it was more serious than postpartum depression.
Then the telltale symptom began. It is called L’Hermittes. Also known as “the barber-chair” sign. It lasts just a few seconds, but it is startling. It’s an intense burst of pain like an electric shock that runs down your back into your arms and legs when you move your neck to your chest. Once I told my neurologist about this symptom, everything changed. An MRI and spinal tap were ordered immediately.
The results came back and it was conclusive. I had MS.
Shocked, No. Relieved, yes.
Scared, like you can’t imagine.
I was handed a few booklets of information on what drug to begin and told to come back when I was done breastfeeding my newborn.
Fear and uncertainty were the only emotions I could use to describe myself at the time.
After wrapping my head around my diagnosis, I became determined and learned very early on how imperative it is to be an advocate for yourself. I researched every medicine, every doctor, and every therapy under the sun. I gathered my MRI’s, all my labs and hand delivered them to a new neurologist. One I felt was the best fit for me. One that I am fortunate to trust and that has me, on what I think is the right path.
The first year was difficult. I decided to forgo traditional MS medication and instead, get an Infusion once of month that was safe while breastfeeding my newborn daughter.
Unfortunately, my MS was progressing and I needed to begin a disease-modifying drug that was going to hopefully put a halt to these symptoms and lesions.
Being diagnosed in 2016, I felt fortunate. I am part of a new generation of disease modifying therapies for MS that have been found through clinical trials to reduce the number of relapses, delay progression of the disability, and limit new disease activity. With a lot of discussion with my neurologist, we chose one and it has proven to be successful to this point in my journey.
Through all my research, I still wanted to do more. I quickly realized how diet, physical activity, and emotional well-being played a huge role in MS. With the help of my Functional Medicine Doctor, and the support of a very close friend who is here tonight (Michele Adams), I decided to go gluten free, dairy free, and caffeine free. I have been able to get on the correct vitamins and supplements and I have found a gym routine that I love. I feel incredibly strong and very blessed that I get to be so active.
I stand here today relapse-free for a few years now In fact, my most recent MRI shows most of my lesions have either shrunk to almost nothing or disappeared. I do not think it is luck.
I truly believe it is because I found the right balance. I continue to receive infusions once a month. I continue a disease-modifying drug. I have chosen an active lifestyle and a diet that I feel has been essential in my progress. I have chosen to live in a stress-free environment; to continue to work in such a fulfilling job; to maintain close friendships; and to pass along my positive experience with MS to others.
I will continue to take one day at a time. For me, there is no other option.
I strongly believe that I am able to do all these things because of the right balance, the help and support of my friends and loved ones, advocating for myself, and educating myself.
I am reminded daily through all the love and support that “I will never walk alone.”