JAN'S LIFE WITH THE DUCK
My journey with MS (the Duck) began in the 1980's. I was experiencing occasional numbness to my left arm and leg, urgency with bladder and bowel, and a lot of fatigue at times. 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 diagnosed with MS, these strange symptoms had come and gone over the years prior to me seeking medical care. After having my second child in 1989, I became extremely fatigued, weak, and experienced numbness again. I was diagnosed with possible postpartum depression and given Prozac. Over time everything improved and I decided to stop the Prozac. I did not investigate further.
In 1994 I sought medical care and began investigating the symptoms that were coming and going. During the initial years, 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 that slow the the attacks or progression. The doctors offered several potential labels (none of which I wanted). As an Advance Practice RN, I knew that MS was a likely cause but hoped it was not. My brother Mike often said “if it walks like a duck . . . and it quacks like a duck . . . “. . I seriously did not want it to be a Duck (MS) and often replied “it might be a goose” and changed the subject. In 2001 after experiencing five attacks with five rounds of high dose IV steroids, I experienced a severe attack. All of my previous symptoms came back with a vengeance and a few more came up. I was no longer able to walk without assistance. Enter my first cane and walker. The MRI of my brain lit up like the North Texas Sky on a clear night and the diagnosis of Relapsing Remitting MS (RRMS) was finally confirmed. So it wasn’t a goose after all. After the attack It seemed easier to deal with calling this ‘thing’ my Duck rather than the chronic, incurable, and potentially disabling condition it is. I still refer to the MS as my Duck today - some 30+ years later. My Duck and have learned to get along, work together, and succeed with getting on with a good life .
After this severe relapse and diagnosis, I was encouraged to file for Social Security Disability (SSDI) and was given a prescription for a scooter. I quickly 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 SSDI would not cut it financially. As a single parent, I knew I could support my children and myself as a professional Advance Practice 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 combined with intense rehabilitation 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 and learn more about my Duck. The kids surprised me with a beautiful professional cane to replace the silver Walmart special 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 to what was needed to become as healthy as possible, and manage my symptoms; and 3) to be able to hold my first grandchild one day.
Long story short, it worked! I have enjoyed many active years and continued on with an amazing career in nursing and education. Since 2001, I’ve experienced the ups and downs of MS, recovered from 8+ relapses (attacks), and learned many lessons along the way. The attacks were sometimes brutal and disheartening with many tears, but I weathered these storms. I chose to follow the saying "When your going through hell, keep on going".
Today, I walk my dog a couple of miles most days,I have my symptoms under reasonable control, and I still wear high heel shoes on occasion (my claim to fame with MS). I managed to get both children through college and off to their respective careers. I held my grandson on my own at his birth and now that he is 10 years old, I go to the park and join him playing. We even learned to kayak and paddle board together! Life is mostly good today but I know all to well that with MS, it is an ongoing journey that changes all of time. I focus on today and prepare for the tomorrows to come, whatever they may bring. I work with my MS Healthcare team to combine their expertise with the lessons I've learned to deal with ongoing challenges. I refer to my approach as the Multiple Sclerosis Makeover and 50:50 Approach to managing life with MS.
The Duck and I have made peace and work together daily with the goals to get along and succeed in building our future. I know that if the duck isn’t happy, then no one is happy so I focus on keeping the it happy! Join me in celebrating the 30+ years since that life changing MRI as I branch out to offer MS Wellness Coaching, education, and make myself available to support 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 support you to reach your best life goals and dreams!
The mantra that has guided me over the 30 years is -
'You won't know how far you will go until you get there'.