My Journey with MS
The summer of 2003 I took a water aerobics class. When class was done, I had issues getting out of the pool. Once out, my left leg was numb to the hip. I sat for a while before crawling on my hands and knees to one of the benches that surrounded the pool. When my leg began tingling, I thought, "Okay, that's weird that my leg would fall asleep, but it'll be okay." I gathered my things and began walking, but my left leg dragged.
A lumbar puncture was ordered
I phoned my physician's office the next day and was sent to a neurologist in a nearby town. After an examination, a lumbar puncture was ordered to be done in the office. They tried 3 times and after the 3rd decided to send me to the hospital to have it done under fluoroscope.
"It's all in your head"
My next appointment was with another colleague of the neuro group, who was very cocky and self-assured. He was convinced "it is all in your head", "an isolated episode" "you need to see psychiatry" and every time I tried to ask a question, he held up his hand and snarkily said, "Are you a doctor? Are you a nurse?" I was in tears when I reached my car and immediately phoned my doctor. He put orders in for me to be seen at Mayo Clinic.
A primary-progressive MS diagnosis
After being examined by 5 different physicians (from 5 different countries) they collaborated and came to the diagnosis of primary-progressive multiple sclerosis. I went home with a plethora of information about the disease and notebooks from all of the pharmaceutical companies about the ABC drugs.
I remember the first 6 weeks of sitting on the couch, mourning that my life would never be the same. Then something clicked in my brain. I HAD to research so I knew what was going on inside of my body. And that is what I did. The next couple months were spent on every website that had anything to do with MS... I researched the treatments, the disease down to what chromosomes were affected and how. The old adage "Knowledge is Power" held true for me in this case.
Driving to Mayo Clinic was a 3-hour trip. I wanted treatment closer to home. That is when I began seeing a neurologist at the University of Iowa. Because not much was known about the disease, I was going back every 3 months for checks and started immediately on Betaseron.
My first exacerbation took my ability to walk
In 2006, I had my first exacerbation. It took my ability to walk and I was in the hospital for two weeks. Solumedrol 5 day treatment and then in a lesser hospital for rehab. Thankfully, the walking came back with sheer determination.
When I turned 50, the neurologist determined the damage had been done and that I'd experience nothing new, so took me off the disease-modifying drug, Betaseron. I believe that was the beginning of the downward spiral.
Giving notice to my employer hurt to the core
In 2015, I gave notice to my employer at the flower shop because I was no longer able to perform the duties asked of me. That hurt to the core, knowing I would no longer be talking with favorite customers, making corsages or arrangements. Instead, I wrote a book about my journey with MS. SO YOU THINK YOU HAVE MS. NOW WHAT? has been the best selling of the 21 books I've written to date.
2016 brought a new journey, a new normal. My older son decided we needed to move to a larger city, closer to medical help if I needed it, so we did. That year I also began an editing business. It was slow at first and today, my clientele includes a couple of best selling authors and a book that will be a movie soon.
MS is individual, but we're still a unique family
I'm older and wiser than I was in 2003. I've learned to listen to my body. I've learned that being this age with MS isn't a death sentence. I've learned to keep my faith strong and my attitude as positive as I can. Are there days when I can't handle things? Sure. Are there days when everything seems wrong and nothing goes right? Of course. Am I giving up? Never. Those words aren't in my vocabulary. I know MS is individual. I know not everyone has my symptoms, attitude, doctors, or treatment. And that's okay. That's what makes us unique... a family.
I will continue speaking out on behalf of the MS community and share my story when and where I can.
Do you have a question you want to ask the community or need more information?