MySoul: An MS Story

I was recently asked to tell the story of the diagnosis that led me from worrier to warrior. I had been tormented most of my life by a vicious reality. I was strong mentally and emotionally. I was that kid flexing muscles and competing all the time. I could be dared to do anything. … but then I would have these days, or moments, when I felt so weak, so tired. For as long as I can remember, I went from diagnosis to diagnosis. Things got really bad when I was in sixth grade, nearing the end of elementary school and entering puberty.

Something happened. No one ever fully explained it then nor yet. We were shopping after Christmas sales as a family and everything started moving all around me, not spinning exactly, more like floating or undulating. I went down. I had to sit. That night was the first of many doctors visits. Most left me feeling like I was probably just crazy. But for months I could not sit up for extended periods. My honey blonde hair actually changed color to a dark dirty light brown that seemed to have a greenish hue. And I cried a lot, home each day. My muscles were still strong. My wit sharp. My humor shifting from silly to dry, but quick. What was wrong with me?

That’s when I was given anti-seizure meds. Then there was the time I was given immuno-suppressant meds for an immune disorder. Then there was the time I was diagnosed with lupus. Then there was the time that I went off all meds and did pretty well, but new weird symptoms kept creeping in. Where did these random panic attack-like feelings come from, at odd times? Why did my hands hurt so desperately sometimes that I couldn’t write? Why do I get so dizzy all of a sudden? Why is my bladder so out of control? What’s that ringing in my ears all the time? Why do I feel like I’m vibrating? Why is my face tingling? … no single diagnosis could answer this. I was finally told that vitamin was being linked to “weird symptoms” like mine. And, although my levels weren’t that low, I began a regimen of vitamin D. Why not?

Everything changed for me one night. I had a job I loved. I was financially stable. I was working out regularly. I had just started my doctoral studies. I was active in my community. I had committed to enjoying life. And, after a brilliant performance at a local theater, I stood to give a standing ovation and I could not feel my right side. I rationalized that away for a couple of weeks but it began to spread while flaring up from time to time in the most distracting ways. I’d be leading a meeting and then, instantly, my right side would rage with pins and needles.

I broke down and went to the doctor again. We agreed I needed an MRI. We didn’t say what we thought it was. We both just said, we need to see if there is something impacting my nerves. We knew, after years of so many strange symptoms we had to take this step, but we didn’t talk much that first visit. When I received the results from the nurse “lesions” that a neurologist would need to find out more about, I knew. I had been researching. My doctor knew. We said, “we’ll see what the neurologist says,” but we knew.

I just didn’t think the universe would do this to me. My stepdad’s first wife died with complications related to MS. His children, whom I loved and cared for and considered siblings, had had to watch that. How could God force them to watch that with me? It didn’t just seem statistically improbable, it seemed cruel. I had some “why me?” moments for sure.

The worst was when the final unequivocal diagnosis came in, nine MRIs later, multiple exams, CT Scans, blood work…  every band of my spinal tap had been positive. I was told I could still do things like go to movies with my family and live a normal life. Well, I didn’t want a normal life. I wanted an extraordinary life. So I called my family and told them that I would do all I could to live with faith and to be a success story. And I have.IMG_2175

My greatest success though, has been in becoming an advocate.

  • I went too long without a diagnosis. That cannot be allowed to happen to others.
  • I sat scared and alone in infusion centers with all levels of health and wellness around me wondering, is that what I will be like in a few years?
  • I had to hear my doctor say “I really thought you’d be in a wheel chair by now.”
  • I found meds that don’t make my life worse and allow me to live well. Two pills a day, forever. Not a cure, just a 60% reduction in the likelihood of new lesions–if I’m lucky and don’t get the rare brain disease that is a possible and deadly side effect. We need more options for treatment and have to move toward a cure.
  • I take meds that literally have a 6000.00 a month copay. I thank the MS Society and research support for co-pay assistance.
  • I know what it’s like to live in fear of every new symptom, new question, but I no longer worry “what’s wrong with me?” Instead I am an MS Warrior.
  • MS is about me, MySoul. It is my weakness, but it has made me stronger. I will keep fighting.

 

Please support MS research at https://www.nationalmssociety.org/Donate

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