Telling My Story
Just like any other morning, the purposefully intrusive alarm blared and awakened me from my deep slumber to begin the day. As usual, the bathroom beckoned me incessantly and as customary, my mental response of “onnn myyy wayyy…!” resounded in my head. However, my physical response was hardly usual. Upon standing, 2 things happened at the very same time:
- I learned my legs had turned to jello overnight and I felt off balance…
- I fell back to the bed – narrowly escaping slipping completely to the floor!
Additionally, I was horribly dizzy and had become cognizant that my eyesight was not unfocused due to just waking up, but had pretty much betrayed me and went on a similar surprise hiatus as my leg muscles. I could see colors, I could make out shapes, but my eyesight was reduced to a hazy blur. In the midst of it all, my bladder impatiently decided it’d had enough of the morning’s shenanigans and angrily released it’s liquid frustration with no further warning.
Visits to the ER, Primary Care Physician (PCP), and Neurologist along with a barrage of tests with negative and inconclusive results ended in a diagnosis of “possible Benign Positional Vertigo”. Over a 3 month period, all of the above symptoms dissipated – some sooner than others such as my eyesight; some lingered such as dizziness and ‘jelly legs’; and some never quite left such as that balance/off kilter feeling (though it was a ‘here today, gone tomorrow’ type of occurrence). That was 2001.
A couple of years following the birth of my daughter in 2003, I suffered a fall in 2005 and suffered a pretty bad ankle sprain. Beginning to feel a burning type of pain in the area between my knee and ankle, I thought perhaps my ankle hadn’t healed properly and/or I’d done more damage than the ER Dr. had assessed. When I began to experience the same pain, same area in the other leg, I dispelled that theory. Throughout the course of the next couple of years, I began to encounter, over a span of time and not necessarily on a daily basis , numbness in my feet and hands, horribly aching arms, pain, heaviness, weakness and tingling in my legs, incontinence issues, short bouts of forgetfulness, fatigue, heat intolerance, and unexplainable falls. I knew I had to seek medical care, but procrastinated because I felt it’d be a repeat of 2001 – a plethora of Dr.’s visits and tests with no concrete diagnosis.
In 2007, many of the symptoms had become much more frequent in occurrence and I simply could not ignore nor explain away my symptoms any longer. I found a new PCP and prior to my appointment, wrote each and every symptom being certain to note even the most minute detail. The Dr. listened carefully, examined me, advised I was “too young to be experiencing many of these symptoms” and promptly referred me to a well-known local Neurology group – incidentally, the same I’d visited in 2001.
Ironically, I saw the same Physician and his Physician Assistant (PA). However, this visit was much different – things went quickly. Unbeknownst to me, the PA had noticed my gait as I made my way to his office. After listening intently to my plight and hearing my list, he asked me to remove my sneakers and walk across the room to the door. Halfway there, he stated, “We have to test you for multiple sclerosis and we have to test you today” and to the nurse, he asked to see if my insurance would allow for an emergency MRI or grant an immediate authorization based on medical necessity. They wouldn’t do either so I had to return 3 days later for the test – much to his chagrin. I’d also have to have a spinal tap – which I was not looking forward to. Ultimately, I was just relieved that he seemed to know what ailed me and his confidence gave me hope that this go-round really wouldn’t mirror my experience from years prior.
After returning and getting the MRI, instead of scheduling the spinal, I was instead given an appointment with the Dr. to discuss the results of the MRI and was asked to bring someone such as a significant other, parent, etc. if possible. My return appointment was scheduled for July 13, 2007 and I attended with my ever supportive mother by my side. What we learned at that appointment sent my emotions in over drive.. They’d decided that due to the significant scarring in my brain and on my spine, per the MRI results, they were confident enough to officially diagnose me with multiple sclerosis without the dreaded spinal tap. Not being too familiar with MS, my initial reaction was relief that there was a diagnosis… finally a name to my medical issues… and happy and relieved there’d be no spinal or additional testing. Then it happened. My mood dimmed as I became aware of the seriousness of my condition and then overwhelmed with the discussion of various treatments, their possible side effects and complications, the urgency in selecting and starting one and the immediate need for me to get a cane due to my balance and gait challenges, etc. – whew! The Dr. also explained that what I’d endured in 2001 was more than likely the onset of the MS, but it’s a disease that can be very difficult to diagnose in a lot of cases because the symptoms mirror so many other conditions. It was all too much and it became very clear to me why I was asked to have a supportive person to accompany me. My mother very adequately provided that much needed support and I climbed back down from the mental ledge in my head I was teetering on at that point.
Everyday isn’t necessarily a great day. Over the years, there’ve been a few different treatments, daily meds, flare ups, exacerbations, medical retirement, progression, frustration, pain, a host of challenges – many daily.
I came to the realization that I could concentrate on being 37 years old with a debilitating disease, a cane, and an unpredictable future, or live with the frustration of the ‘what if syndrome’: What if I’d known in 2001.. What if I’d gone to the Dr. sooner.. What if I’d been on a treatment sooner..??? – thereby reducing myself to a life of pure misery…
I could live my life focused on and thankful for all the positives which include, but are not limited to, my support system, my faith, and what I can as opposed to what I can’t do. I choose to be happy – not in having a chronic illness, but because it’s healthier for my psyche and also because perhaps my outlook can be an inspiration to someone who may need help off of their own mental ledge as they may share the same, similar or their own form of dire circumstances.
When I advised my 14 year old son that I indeed had been diagnosed with multiple sclerosis, he simply asked, “Is it fatal?” to which I replied, “It’s serious, but not fatal. He stated, “Good. We can deal with it then”.
And that’s exactly what we’re doing 10 years later – dealing with it. ♡
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