“Begin at the beginning, and go on till you reach the end, then stop.” -Lewis Carroll
I do not own the rights to this music.
This is a story of my experience living with multiple sclerosis from my diagnosis up until this very moment. As of this writing (August 2017), it has been seven years since my diagnosis, so the story is long with twists and turns and precarious balance like the title of this blog. I am also a single mom of a tween age girl who just started middle school. My story includes my tween, but I will note on occasion when she is a bit younger (i.e. toddler, preschooler, and eventually middle school age), which is where we are today. So now that you have a little background on me, let’s get started on the story of my life with multiple sclerosis.
It all began in August 2010, the day my life would change forever. I was on my way out to the club for drinks and dancing with my boyfriend at the time. While I was getting ready, I became extremely tired and my left leg felt unusually heavy. I was so excited to hang out that night, and my sister had agreed to babysit my then two-year-old daughter. So I had to push through what I thought was only a little fatigue. Before I knew it, my left leg was going numb, I was dragging it from room to room around the house, and it felt like it weighed a ton! My left foot and leg would continue to be numb (and heavy!) for the next seven years, and counting.
I made it to the club, which my friend usually attended without me, due to my lack of having a sitter. But it turned out to be just as fun as he always made it seem. I walked through the doors with my four-inch heels that it would be my last time wearing. Then we walked across the floor, got drinks, and we even took pictures, which turned out gorgeous. About an hour after we arrived and got settled, the numb feeling and muscle fatigue began to spread in my left leg. I was thinking, oh no! How can this STILL be happening?? The one and only night when I have a babysitter? I can only last one hour in the place? BUMMER! I had to leave. That would be the first of many missed events and broken engagements due to the effects of Multiple Sclerosis (MS), I would later find out. I left and went home stil uncetain of what was happening.
About a week later, I checked into the Emergency Room (ER) at the University of Maryland Medical Center in Baltimore, MD. That entire week my leg continued to go numb and it remained fatigued for several days. I never thought multiple sclerosis was the issue until after I went to the ER. The ER doctor examined me and listened to me describe my symptoms of numbness and “itching under my skin” then I was discharged with instructions to get screened for Multiple Sclerosis (MS)! What?!? I was floored! I decided at that point, if I had MS, I would just have to give up on my current family and career pursuits and move back home to Connecticut, but I will say more about that later. I found a neurologist right there at the hospital, but the next available appointment was a month away! That was the first of many times that I would learn patience from MS and the medical process.
The neurologist assessed my situation and I explained once again that I have “itching under my skin” but my bigger concern was the numbness and weakness in my left leg and foot. Looking back, I now realize that I was tired and needed to rest. I was burned out. My left foot had what I now know as foot drop. I was literally dragging it around. The neurologist explained, the available medications. He prescribed a three-day course of steroids to address my symptoms. I now see the three-day treatment as an emergency medication to relieve the current symptoms. (Since then I have also had a five-day course of steroids.) I started to feel better by the third day. The “itching” went away and the dragging ended. However, my feet and hands remained numb and weak whenever I was overdoing it. The neurologist explained that the MS screening process also entailed another visit to the hospital for an MRI.
I would eventually develop an on-again-off-again, love-hate relationship with the MRI procedure. The hospital ordered an MRI of my brain and spine to identify any activity indicative of multiple sclerosis. So I booked an appointment and had this powerful machine examine my brain and spine. The MRI doctor asked if I wanted headphones and what type of music I like. I said sure. What I did not realize was how LOUD the MRI machine would be. I did have a few breaks of quiet here and there, where I could actually hear music, but a majority of the time I heard a loud banging and clanking and whistling sound all around me. I have learned since then that the MRI is a miracle procedure and a blessing for what it’s able to reveal. When the MRI results came back, my primary care doctor delivered the news. She explained that my MRI showed lesions on my brain and spine, which were indicative of MS activity. She stressed the importance of exercise, diet, and keeping a strong support network. I didn’t anticipate any issues with the exercise and diet, but the support network was something I could not guarantee, and she was concerned.
That got me thinking, just how important is it to have a reliable support network for MS or any other health matter? Or for life in general?