Picture it: Connecticut, Thursday August 29, 2019. It was an average day in my crazy, chaotic, non stop, 32 yr old single mom life. I brought my son to school during his first week of first grade, then rushed off to work. It was also my first day working in a new position; a stressful yet exciting occurrence. My boyfriend would pick up my son after school on Thursdays so I could have a day of not rushing after work and we could have dinner with his family at his house. Once I arrived, we decided to stop over at his Godmother’s house across the street so my son could say hello and see if he could schmooze a treat out of her. When we left, the “boys” being boys decided to have a race back to the house and get ready to eat. I was in my work clothes; definitely not suitable for joining them in their competition. Being an athlete myself, I opted to jog behind them.
Little did they know, something disturbing was happening to me in that moment while they got further away from me. As I began to jog; my left leg slowly went numb, it was almost as if my leg became robotic with a mind of its own and I didn’t have access to the controls. We got back in the house and I was in such disbelief that I kept to myself for a bit. My boyfriend, knowing I have absolutely no poker face asked me what was wrong. I tried to brush it off but I couldn’t hide it. So I explained to him very simply, “Something weird happened when we were coming back. My leg went numb and I couldn’t make it move right.” He chuckled for a second but realized I was very serious. I mentioned I didn’t want to talk about it anymore and we went about our evening.
Fast forward to late October, my leg “acted up” a few more times. I would get numb and tingly patches on my leg with very odd sensations too. Then migraines kicked in (which I had NEVER experienced before), difficulty sleeping, brain fog, lost thoughts and forgetfulness, clumsiness and restlessness. I decided to make an appointment with my primary care doctor. She listened, assessed, ordered blood tests and advised in the meantime that I find a way to de-stress. She told me to even try taking ibuprofen daily just in case I had inflammation aggravating a nerve.
After a few days, I got a call to schedule a follow-up. My test results were all normal, except that I was positive for antinuclear antibodies, ANA. My doctor was so wonderful in assuring me that sometimes that happens and it’s nothing but because I was still presenting symptoms, she’d do further specialized testing. I had brought up that my son’s father, a paramedic, mentioned that with the symptoms, my age, etc, it seemed that I fit the description of someone with multiple sclerosis…and my doctor agreed. She had her office staff schedule an appointment to see a neurologist. The outcome: nothing until MARCH! I didn’t know if I could wait that long. But in the meantime, she took care of me. New symptoms came up that were concerning. I was a long way from seeing the neuro and even further from getting an MRI. So she ordered one herself; she wasn’t willing to hold off. When she got the results back, we met and she felt there were lesions on my brain, 6 or 7, consistent with MS. Knowing that I wasn’t to be seen for another few months, she made a call and within a few hours I was being asked to meet with an MS specialist the following day…on his lunch break! It was a miracle!
Throughout this process, my son was and is such a big part of my daily life that I made sure to keep him informed. There are so many days that it’s just the two of us and there’s no hiding my symptoms. It wasn’t easy to explain what was going on and what I was going through to a (then) 5/6 year old. My boyfriend accompanied me to my neurology appointment and on the way he asked me “What if he confirms that it IS MS? How are you going to feel about it?” I just wanted an answer so we can move on to trying to fix whatever we can and so I can try to live as normal a life as possible.
He and I went into the office; both of us nervous, anxious and scared. The neurologist was so calm and so straightforward. He was sure that this was Relapsing Remitting MS, it was caught early enough and we can move quickly to slow it down or stop it fairly easily. We discussed treatments, what to do during a flare up, things to keep me healthy, etc. From my first appointment with my primary care doctor to getting my diagnosis was the longest 93 days of my life. But the reality is this: 93 days is a drop in the ocean compared to the time that many people wait. Some wait years before they receive diagnosis, IF they even get a diagnosis.
Multiple sclerosis is a very complex and life changing disease that I now had to figure out my future and what this all meant for me. I had to figure out how to keep my son informed in a way that he could understand what was going on without scaring him. I had to figure out how to work multiple jobs, how to maintain my relationship and friendships and how to adapt to not being able to be the same athlete I worked so hard to become. MS didn’t care what my life entailed; that I have a son to care for 5 days a week, that I love volleyball and running and that I didn’t have time to figure out what was going on and how to make it stop. All while trying to find time to breathe…and maybe take a nap.
On the other hand, I don’t always care what MS has planned for me because sometimes I have different plans and MS is not invited. Over time, so many people have said “I’m so sorry” when they hear of my diagnosis. I’m not sorry, so why should they be? While MS has taken a big part of who I am and halted who I was becoming in that moment, it has also created new paths for me to be able to show people that if life hits a dead end or a road block just look for the detour. I may be hesitant to play volleyball or run 5ks, but I’ve started to sing more (another dream of mine) and I am an inspiration of sorts to my son on a different level. It has made me want to be better at supporting people who need it when I can because I don’t know where I would be without my support system.
My hope is that by sharing my story along with others, enough awareness can be sparked and that it can encourage increased research funding with the support of friends and families…or even complete strangers that just care. Multiple sclerosis is my diagnosis, but not a life sentence and hopefully one day that can be the case for all warriors.
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