This page will develop over time. I plan to write a bit, and narrate via MP3 podcasts what I have learned about multiple sclerosis, its diagnosis, its prognosis, and its treatments. I became acquainted with this condition gradually, over a period of four years, from 2003 to 2007.
My journey began with a stubborn pair of cold feet. My feet were often cold after coming home from work. In a heated classroom, I would perspire even through winter months. The heaviest perspiration was in my feet and hands. When I was younger, I always had a hand towel in my desk drawer. But as I grew older, my hands were less affected than my feet.
And so, the winter of 2003, my feet went to sleep. They sent messages of pins and needles along nerve pathways to my brain. Being winter, I assumed that the feelings of pain were related to the cold weather, and my typically wet socks. I always wore cotton socks, having heard that that way I would not have athlete's foot or other irritations due to the moisture.
When my feet had not returned to normal in a week's time, I knew this was not simply due to cold winter weather. I went to my family doctor, a woman whom I had seen for over twenty-five years ... a woman who knew my every illness, as she kept careful notes on index cards in a card catalog. She could tell me quickly when I had last been there, why, and what prescription I might have had. By this year, she was in her late seventies, and sharp as a tack.
She looked at my feet, between my toes, the underside of my heels, and commented that the skin was intact. She pressed my toes to see whether I had a normal response, meaning that they "pinked up" soon after relieving the pressure. And she asked me if I always wore socks like the ones I had on that day. They were cotton.
"Do you know that cotton absorbs moisture?" Yes, I responded, and she continued: "And that moisture stays in your shoes, around your feet, all day?" Well, yes, I guess so, I said, beginning to realize that cotton might not be the best choice for me.
"Wear wool socks," she advised. "Wear them every day. They will draw the moisture away from your skin. But you may need to change your socks throughout the day, removing the moisture from your shoes as well."
I purchased wool socks that weekend, at a little store in Freeport, Maine, called "British Goods." They were more expensive than the socks I would typically have seen in a department store, but I felt my feet were worth the expense.
And they were so soft, and came in so many colors, that I bought several pair. On the way home, we passed a wool shop, and I bought enough Danish wool to make myself socks ... and the price of the wool was twice what I'd paid for a pair of socks, and I felt better about the socks' price.
But a few weeks later, after enjoying the socks, I called to tell my doctor that my feet were still "asleep," as that was the only way I knew to describe the pins and needles feeling. She said that perhaps it was time to see a vascular specialist, to judge whether the problem with my feet might be due to an insufficient blood flow.
I saw the vascular specialist a week later, and he checked my veins in my feet, and my legs, and my arms and hands, and pronounced my vascular system as normal and fully functional. He returned that information to my doctor, who, I'm sure, recorded it on another index card, and added that to my little stack. Her next suggestion was to see a neurologist. I asked why, as this was not an issue with my head, after all.
She reminded me that my nerves were part of a central nervous system, and that was controlled by my brain. And so I agreed to see a neurologist. However, it was a three month wait to see him. When we did meet, my feet had awakened.
I described what the winter had been like. I told him that my feet had felt numb. "Numb?" he asked. "I thought you said pins and needles." I answered yes, pins and needles, kind of buzzing, and kind of numb. "They are not numb if you have feeling," he corrected me. He asked me to come back the following week, to the hospital, to have some nerve assessment done.
I met him in the hospital's outpatient waiting room. He was a bit behind schedule, but eventually he came and led me to the examination room. He was dressed in scrubs, but I learned soon that he was often in scrubs, as he had patients to see and tests to do each day. We walked down a long corridor, and I had to hustle to keep up with him. Every now and then he would look back over his shoulder to make sure I was still following.
In the room, he asked me to take off my shoes and socks, and get onto the examination table. He pulled over a table with instruments on it. Before starting the test, he explained that he would be checking nerve responses. He attached some electrodes to large muscle areas of my skin, and then began inserting probes to test nerve reactions. It was not uncomfortable, and the probes were hardly felt. He was very skilled at this, and it was over in about half an hour.
My feet and hands, of course, were literally dripping sweat, and he commented on that in the notes he was dictating into a recorder. "Excessive perspiration indicating hyperhidrosis..." I knew that term ... I had learned of that diagnosis when I was a teenager. My family doctor then had prescribed a medication which I took for five years, until I married and wanted to start a family. I took the medication again later, after my daughter was born, but didn't use it often, as the perspiration was less bothersome during my years at home with her. When I went back to work, I took it again, but was bothered by its side effects ... dry mouth, and headaches behind my eyes. I had gone then to an ophthalmologist, who recommended that I stop taking that med.
I had an appointment to see the neurologist a week later, to go over the test results. He said that my nerve responses were in the normal range. He asked whether my feet had had any tingling since warm weather had arrived, and I said no.
His closing remark was "You had something. You don't have it now. It may return in the future." He dictated his notes again, asked me if I had anything to add to them, and I said no. He then added that, should I have another "event" I was to return to his office. He closed the dictation with a nice sentence thanking my doctor for having given him this opportunity to consult with "this very pleasant patient."
I would be back to see him again in four years. That is when I had the next "event."
In November of 2006, I went to Washington, D.C. with our seventh and eighth grade classes. On that trip, we would spend one evening aboard a motor vessel on the Potomac River for a full moon dinner and dance cruise. My aversion to boats and sea-sickness began years before on a very large pleasure boat in Lake Winnepesauki, and I steered clear of them ever after. But this trip was important to the students, and to me... I asked my doctor for a prescription for something to combat the nausea that I anticipated, and she prescribed behind the ear patches. People had been telling me for years that I could enjoy cruising with such preparation, and so I went. I read the packet carefully, and was surprised to see that the patches affected hormones, and that for some people, the nausea forestalled would appear months later when the hormones leveled out. Still, I wondered about such a thing.
That January, I had jury duty, in the oldest still functioning Federal Courthouse in America. The beautiful Federal brick structure was under renovation due to age-related deterioration, and the furnace had been pulled out and replaced by small electric floor heaters. Unfortunately the temperatures that January were well below New England's normal, seeming more arctic that wintery: single digits the entire week and a half that I sat in that courthouse. My wool socks did keep my feet warm, though, but the rest of me was very cold.
In March, the nausea hit, and brought with it vertigo, and dehydration, and a trip to the emergency room to replenish my fluids. The doctor there did a cat scan, as I had a serious headache as well. He saw something on the cat scan but said I ought to have an MRI, and asked if I had a neurologist. I remembered that long ago conversation: "You had something, and it might return." I said yes, I did, and would see him.
When we saw the MRI images, and he told me my brain looked much older than I was, and that with that many lesions and so few symptoms, I was his enigma ... I knew one day I would write a book and use that term. And four years later, I wrote Multiple Sclerosis, an Enigma.
Next chapter: Adjusting to the Diagnosis: 2007
I read all the websites about the various support groups for people with multiple sclerosis. Meanwhile, I was tested for all other possibilities: Lyme disease, Lupus, Aids, and so many other diseases, including, I think, leprosy. And when the diagnosis was finalized after a traditional angiogram ruled out the last possible 'other' diagnosis, vasculitis, the verdict was pronounced. The neurologist asked me to look over the pharmaceutical websites, and I did. When I saw him next, he asked which one I'd chosen.
"The everyday injection ...the synthetic one that claims it will attract my immune T cells and pacify them before they can attack my central nervous system ... it claims not to cause flu symptoms. I can't even consider the other three, the interferons, as they all say a common side effect is flu symptoms the day after the every-other-day injection, which means I'd be absent two or three days a week. I can't live like that ... I can't be a teacher like that."
He agreed, that the daily injection would be the one I would want. After all, this was a prescription for the rest of my life... or, I thought to myself, at least until I retire from teaching.
I didn't want to retire. So I settled in to the schedule of injecting every night before going to bed. Rick helped me make maps of my skin surface on thighs, back of arms, lower abdomen and hips. A nurse came out and trained us both on how to give the injection, how to prepare for it, how to administer it ... and how to dispose of the used syringes legally. So many instructions: The beginner's kit came with a placemat illustrated with a place to put the injector, another for the syringe, and one circle for the cotton ball, and a square for the alcohol wipe ... it was, to say the least, overwhelming.
By the end of the calendar year, I was practiced enough that I could get the routine done in just under five minutes, not counting the time I would then hold either a heat pack or a cold pack on the site, which would burn beneath my skin for almost a half hour before I fell asleep.
I continued with this nightly procedure, with Rick's help on the hard to reach sites behind me, for four more years. Over 1500 injections during that time ... over 1500 nights that began with soreness ... and over 1500 concrete reminders that I was now a PWMS: a person with multiple sclerosis.
Next section: 2010 - 2011
During the fall of 2010, I found each school morning a little more difficult. Waking up, deciding what to eat for breakfast, choosing an outfit to wear, and remembering the myriad supplies necessary to begin the school day became almost overwhelming. Every year of my teaching career was unique, and different from the previous year, but this one seemed extremely different. I had worked on the groupings through the summer each year that I was team leader, and had the process down pat. But this summer, I wasn't the team leader anymore, having asked one partner to take that position on in the middle of the school year. So we began our first teachers-only day by building our groups.
Perhaps that was the pivotal change: not having handled the students' cards dozens of times as I sorted them into sixteen groups, balanced by gender and academic level and individual educational needs, I hadn't had time to absorb their hundred names.
My ability to learn new names was much weaker than ever before. Writing progress reports in October was very difficult, as I wasn't sure of each student's name yet. Meeting parents at an informal coffee we held each year in late September was also challenging, as parents would want to exchange pleasantries and successes and worries for their child, and I could not connect the name they gave me to the student in my class.
My anxiety level was climbing as I realized that this was not a temporary loss. When I drove to Lowell for a professional development opportunity I was totally lost due to a detour, and I rode aimlessly for over an hour, afraid to stop anywhere unfamiliar to ask for help. My confidence was low, and my energy was lower. I began taking a day off each week to sleep, and to catch up on reading and responding to student work.
Mid winter, our principal, new this year, asked how I was doing, and was there anything she could do to assist. I told her I would think about that. She suggested we meet together, and include Rick and my two friends to help guide the discussion about how best to move forward.
The outcome of that meeting was a decision to retire two years earlier than planned. There would be financial consequences, but I was encouraged to consider the improved quality of life that would balance that loss. More time with Rick, more time to sleep when tired, less demands on my attention, evenings and weekends free of correcting essays,grading tests and writing progress reports ... we would finally be at our 'happily ever after.' And we were, and are still. But the quality of life options have been restricted by the smaller pension. We've dropped down to one vehicle to save money. We've stopped going out to eat once a week as we had done before. We've spent more time building our small businesses, and learning about a new world called social media and marketing.
And, no longer feeling obliged to rise early each morning and stay on my feet all day, I discontinued the nightly injections, and decided to side with those who felt the best treatment for multiple sclerosis involved choosing healthier foods and getting more exercise. My mood brightened immediately after stopping the injections. Whether it was a physical change or a psychological change didn't matter - I felt better, and I felt like myself again. A few fleeting doubts about my decision to retire early were easily put to rest by putting six books out for readers. Things were going well, until...
Watch for a new page: Another diagnosis, and more medical decisions.Spring, 2012
On April 25th,2012, a book discussion was broadcast on Blog Radio. This introduction is meant to open that program. To hear the two hour program beginning at 7:00 pm EST, discussing this book with several people who have experience with multiple sclerosis, see the next link.
And this is the link to a collection of book reviews offered by readers of my books at Amazon, Smashwords and Goodreads.
This podcast is introducing a book discussion on my title, Multiple Sclerosis an Enigma, and includes an excerpt from chapter 17 of the book,
There is a special page at Facebook: this is the link. The people who comprise this group are authors and readers of books and poetry having to do with what is termed there as "diff-abilities," or people facing chronic conditions but working through the challenges to create art in whichever way they are talented. It's a wonderful group of people, and once a month they come together for a book discussion, which is broadcast by MSStation through Blog Radio April 2012 is the fourth month, and my book is the feature for this month. As the podcast advises, the live book discussion will be held on Wednesday, April 25th, at 7 pm Eastern Standard Time. I will post the telephone number closer to the date, where people can call in with questions or comments relevant to the book discussion, and also with a link to the page online where you can listen live, or at a later date.
The featured books preceding mine are captured in recordings that you can access in the right hand margin of my blog, http://terrysthoughtsandthreads.blogspot.com