My Journey with Multiple Sclerosis

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My Journey with Multiple Sclerosis: 

When I was diagnosed with Multiple Sclerosis in 2003, I was working as an Accounting Manager.  I had just turned 47 years old, but I suspect the journey with MS began even years earlier in my life, possibly during childhood. You see, my MRI’s show three (3) brain lesions, and whether coincidentally, or NOT, there have also been three (3) significant medical events, the first during my childhood when I blacked out at the top of a sliding pond. The second was as a teenager when I blacked out and fainted during a camping trip. The third, during the summer of 1996, when while vacationing with my husband, mother, and sister, in Rockport, MA, the entire right side of my body became numb, as though I had gotten a shot of novocaine, with the numbing effect down the meridian, center line, of my body radiating throughout my right side, head to feet.

We were puzzled; so were my doctors, and from 1996 to 2003, it took 7 years to receive a diagnosis (my case being difficult to diagnose), and to begin a disease modifying drug (DMD), which gave me back my life within 24 hours of beginning the daily Copaxone injections. But those 7 years between felt like hell, in making lifestyle changes, getting family to understand, having doctors listen in the limited time scheduled during appointments, and I was still working corporately. There, also, was always the question, hovering, regarding disclosing or not disclosing, and as either new symptoms would appear, or old symptoms reappear, I would gradually over time reach out for accommodations in my workplace. By the end of 2013 I was no longer working in corporate America, and at 58 years old, after a lengthy legal appeal process, I began receiving SSDI.

Have you ever been asked by your doctors, what are you doing for socialization, only to respond, “seeing them”. My socialization had diminished, as had my self-esteem, I’d been feeling a sense of loss for who I’d once known myself to be. I’d gone from being an independent, professionally, socially active individual to becoming increasingly dependent on others, and needing to navigate the web of a government system.  It was an exhausting process and I was feeling limited by pain (physically, emotionally, and psychologically), anxiety, and depression. But a turning point for me was around 2011, when I began attending a narrative writing program. I had already begun transitioning from Corporate America. My mother had recently passed from Cholangiocarcinoma (biliary duct cancer), I had become the primary caregiver for my sister (who has been living with the effects of Meningitis since infancy), and a very good friend had then been diagnosed with Breast Cancer. What I didn’t at first realize was the influence  writing groups, and narrative medicine, the resilience and inspiration of the participants, and what my own writing would have on my acceptance of being diagnosed with multiple sclerosis in 2003, then endometrial (uterine) cancer during 2014, and having a right hip replacement in 2017.  

So my taking this path along my journey, of writing, was metaphorically my returning home, rediscovering who I was in the here and now, and making a difference in my survival. It had been earlier in my journey that I’d graduated from Hunter College, with a Bachelor of Arts in Health and Communication. I’d also begun working with my husband in a family business, then in medical offices, and corporately, and in each where I gained valuable experience in business accounting, systems, and strategies.  When I began narrative writing, the people participating in the groups became my community, there was a safe place where we could express ourselves to each other, we understood, what we each were going through, deep and meaningful friendships have evolved.  Narrative writing, and narrative medicine, facilitated reminding me that I’ve always loved listening to people, supporting people on their journey, learning, writing, and speaking. Mostly poetry, prose, and musings, my writing reflects my love of nature, and the human experience. What does your writing reflect?

Do you have someone in your life that is supportive? I am grateful for my supportive husband of 42 years; we’ve also become care-partners. I’ve supported and cared for him through his coronary bypass, spinal fusion, and diabetes. He’s been standing with me, and making adaptations with me in our lives surrounding MS and Chronic Conditions. The love and mutual support we give each other doesn’t happen in all relationships, so I feel quite blessed. 

Health advocacy was something I learned to do for others in my life early on, self-advocacy was a whole new learning experience.  Writing, I discovered, is a wonderful vehicle through which I believe we can hear our own voice, hear the voice of others through their very own narratives, and have our voices heard worldwide. 

Today my motto is: “Find what you love to do, what you are truly passionate about, and decide on how you will use what you love to do to serve others.  Keep moving forward!  THRIVE!”

Did you know:  “The Multiple Sclerosis Foundation estimates that more than 400,000 people in the United States and 2.5 million people around the world have MS.  About 200 new cases of MS are diagnosed each week in the US.  Rates of MS are higher farther from the equator. Although MS occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000 – 10,000 children (up to 18 years old) in the United States has MS, and another 10,000 – 15,000 have experienced at least one symptom suggestive of MS. Studies suggest that two to five percent of all people with MS have a history of symptom onset before age 18.  Diagnosing MS in children is more challenging because of other childhood disorders with similar symptoms and characteristics.”

So, I’d like to know:

  • What are your needs?  
  • Do you feel as though you are surviving?
  • Or are you struggling?  
  • Or are you looking to be thriving?  
  • Do you struggle with getting family members to listen, to understand?  
  • Are you having difficulty with receiving suitable accommodations in the corporate workplace?
  • Do you find it challenging getting doctors to listen in the short time they are allowed during scheduled appointments?

These are common challenges in dealing with chronic illness overwhelm. Don’t struggle alone! Remember, the quote by Maya Angelo ~ “Surviving is important. Thriving is elegant!” 

I invite you to schedule a conversation to see how I can help you navigate your own journey from surviving to thriving. Say YES and click HERE to schedule a complimentary 30-minute chat. 

I look forward to supporting you on this journey!

Andrea

Elevating the Patient and Caregiver Experience