JAN'S LIFE WITH THE DUCK
My journey with MS (the Duck) began in the spring of 1994. I was experiencing numbness to my left arm and leg, urgency with bladder and bowel, and a lot of fatigue. I later learned that the electric shocks that occasionally went down my arms, the heat sensitivity and occasional blurry vision were also related. As with many people diagnosed with MS, these strange symptoms had come and gone over the years prior to me seeking medical care. After having my second child, I became extremely fatigued and weak. I was diagnosed with postpartum depression and given Prozac. Over time I got better so we left it at that and did not investigate further.
During the initial years of investigating the root cause of the symptoms, MRIs were not conclusive and I did not meet the criteria to confirm a diagnosis of MS. Unfortunately, that meant that I did not qualify to receive MS treatments to slow the the attacks or progression. Since the doctors did not know what was causing the symptoms, they offered several potential labels (none of which I wanted). As an Advance Practice RN, I knew that MS was the most likely cause but hoped it was not. My brother Mike often said “if it walks like a duck . . . and it talks like a duck . . . “. I seriously did not want it to be a duck (MS) and often replied “it might just be a goose” and changed the subject. Five attacks and five rounds of high dose IV steroids later, with a brain MRI that lit up like a North Texas Sky, the diagnosis of Relapsing Remitting MS (RRMS) was finally confirmed in 2001. So it wasn’t a goose after all! It seemed easier to deal with calling this ‘thing’ a duck rather than a chronic, incurable, and potentially disabling condition. I still refer to the MS as my Duck today - some 30 years later.
I’ve experienced the ups and downs of MS, recovered from multiple relapses, and learned many lessons along the way. In 2001, after a severe relapse that left me unable to walk without assistance, I was encouraged to file for Social Security Disability and was given a prescription for a scooter. I promptly asked the doctor, “what are the other options because that sounds awful!”. As tears welled up in her eyes, I realized that she was serious. I knew that the SSI would not cut it financially. As a single parent, I could support my children and myself as a professional RN if I could get back to work. By that time, my kids were turning 12 and 16 years old. I opted to go for another round of high dose steroids and begin disease modifying therapy with intense physical therapy. I rented a wheelchair for a short time, bought a really cute red walker (called it Ruby) and began a focus to improve my overall health. The kids surprised me with a beautiful "professional cane" so I would not be embarrassed using it when we went out. My son polished his driving skills by taking me to appointments and physical therapy. The original goals I set: 1) to get both children off to college and help out financially if I could; 2) to take my medications and get as healthy as possible to promote better control of the MS; and 3) to be able to hold my first grandchild (without assistance) one day .
Long story short, it worked! I have enjoyed many active years and maintained an amazing career in nursing and education. The 8+ attacks were brutal but I now enjoy 6+ years of MS stability between attacks, walk my dog a few miles most days, and still wear high heel shoes (my claim to fame with MS). I managed to get both children through college and off to their respective careers. I enjoy a 9 year old grandson that I held (on my own) at birth. I can still go to the park, join him climbing on the Jungle Jim and going down the slide, and I recently learned to kayak and paddle board. Life is mostly good today but I know all to well that with MS, that could change at any time. I focus on today and prepare for the tomorrows to come, whatever they may bring.
I now want to share the knowledge I've acquired and the lessons learned with everyone impacted by MS. The Duck and I have made peace and work together daily with the goal to succeed in building our future. I know now that if the duck isn’t happy, then no one is happy! Join me in celebrating my 30th year as I branch out to offer MS Wellness Coaching, Education, and make myself available to you wherever you are in your MS experience. I look forward to hearing your story, exploring where you want to go, and supporting you to find your unique path to success. Aim high and let's work together to live your dreams!
My belief is 'You won't know how far you will go until you get there'.