It's February 11. Every year since I was diagnosed on this day, I go through a time before the 11th when I feel depleted, helpless, and a bit confused as to why. Then at some point it hits me - this day, this time of year.
On this day I traveled with my good friend Kelley, an hour from Kenyon College to Ohio State University Hospital, where I had seemingly infinite tests over the course of years, with none of the tests indicating anything. But this day would be different.
The physician for Kenyon College at that time was wonderful. Dr. Schermer. He was the only one who was honest with me about what was occurring. He always had thought I had MS, but he never said so. Others said no way, this can't be MS. He talked to me the day before I went, looked me in the eyes, and told me I would get an answer, and gave me his phone number. I don't know if he knew that the tests they had scheduled for that day were the wrong tests to diagnosis MS, that the tests shifted halfway through the day.
Because of the shift in tests, all I remember during that day was going from test to another - random tests that seemed like last-ditch efforts to find something - anything. These efforts had increased because I had lost my balance over Christmas break when it was dark, hit something, and got a large gash in my forehead requiring stitches. When I returned to Kenyon and Dr. Schermer removed the stitches, he pushed for finding an answer.
Feb 11 began with 2 random nerve tests which were a bit painful. Then I had another MRI (over 3 years, I had tons of these). But during this one, wait, something had been found. That led to more MRI images all of a sudden, shooting dye to show things better. Then a spinal tap was scheduled and done. Having a needle stuck in my spinal cord to remove fluid was no fun - I don't recommend them for anyone, unless needed. There were more tests, too.
I had been reading - I knew the changes in tests were pointing toward an MS diagnosis. But no one could say anything until I saw my physician. I wonder, do people realize how that felt? I had my friend Kelley. She was awesome. But I was in this big hospital in Ohio. My parents were in Colorado. I was alone. No one was saying anything because they couldn't. Surely a 20 year old was ok with this?
When I finally saw my physician at the end of the day, he told me there was no tumor in my spine but there were a few lesions indicative of MS. Then I got more bloodwork to make sure this was, indeed, MS. Yup - bingo!
Knowing - in a sense there was relief in that. It wasn't easy. I had a great support network at Kenyon College. Ohio State tried to pair me with an MS specialist which didn't go well. I begged to get to keep the same neurologist and I got to keep him. Dr. Schermer also made sure of that.
Dr. Schermer stayed involved. When I had an MS attack at Kenyon, he infused me with steroids. Years later we laughed at this - "remember when?" When I got the flu, he scolded me for nOT getting a flu shot, and that I had better be the first one in line for flu shots every year after that. I was but now I've stopped. He's many states away and can't look me in the eye and scold me. I'm on Ampyra and haven't been sick since that started (well,, I had a 1 day fever). Not getting sick is so odd, but so are things like craving milk and using a pill of Prednisone (a steroid) about once a month to calm leg spasms and help me sleep. Steroids usually don't aid sleeping!
I've been back to Kenyon twice in recent years. I love that place. I hope my daughter can go there. Both times I saw Dr. Schermer. He's the best. We can talk politics and it's in a way like talking to myself and getting very excited that someone thinks the same way. He tells me about Indian reservations and medical care there (he spent a year practicing medicine on a reservation, or near one) - I learn. He shows my daughter horses, lets her play with his dogs, and gives her all the ice cream she could ever want. He can't wait to hear if I'm on something new. I know he knows I'm on Ampyra. But I'm much better than when I last saw him, less than a year ago. I know he's still cheering for me in Ohio. He has an incredible enthusiasm and passion for the important things in life.
So today I remember the day. I remember the year as a fog, living in a dark room on the 4th floor of a dorm. I remember an incredibly supportive community called Kenyon College. I remember supportive friends and family back home.
I celebrate Ampyra. 20 months without an MS attack. Walking around the track in 21:44 without having to stop to rest. Walking up the big hill to my daughter's school for the first time - the office staff so happy to see that - a boy telling me I looked like I was dancing - and the next time I saw him he said "you're still dancing." So many little things I took for granted. Soon I'll get the Bioness (www.bioness.com) to help me walk.
But mainly this year, I'm going to remember the role Dr. Schermer played, and the wonderful person he will always be. Thanks to him for all the caring, always believing in me, always concerned about me, and the laughter we shared years later.
Peace.
1 comment:
To ALL The Great Docs That Bring About The Relief, The Freedom, Of Knowing ...
Mine came when I moved some 800 miles & being on numerous medications needed to establish a new primary care doctor.
This new doc didn't like the cocktail of meds I was on & wanted to run a bunch of tests. Most I had done in years past but agreed to them again.
The next week I sat down in his office across the desk from him as he started asking a long list of questions, pulling information going back more then 14-years, to high school graduation.
Then said he thought a specialist would be very beneficial at that point.
I asked what he thought was wrong & he replied he didn't want to speculate while handing me a written referal to a nuerologist, with the date & time of an appointment he'd already made for me.
I looked at the name of the doctor written on the referal, recognized the docs name & knowing his primary specialty, I asked "MS?"
His jaw dropped as he exclaimed, "You telling me you know!?"
"Suspicious for many many years" I said.
Then came a long heart-to-heart talk. MS does not mean wheelchairs & that my dreams & life quests need not change.
Talk of treatment options -benefits & risks & side effects & the impacts of this "possible MS" on my day-to-day life in the present & future & the past 14 years.
Then him telling me to "TAKE CHARGE!", this being My Life, My Dreams, My Treatment Plan ... -My Dance- ... That I needed To Be The One In Charge! Not some doctor. The decisions had to be mine.
The neurologist confrmed the diagnosis a few weeks later & has always presented me all the options, all the information, & then facilitates me in learning & exploring the possibilities as I make my deicsions - & then supporting me in those decisions, finding & pointing out the good things about them, reenforcing them as being the right decisions for my treatment plan, My Dance.
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