Tuesday, June 24, 2014

Washing the 'souls' of my feet...

I was in the shower yesterday, and wondered how to wash my feet. It was a 'bad day' for balance. So, I positioned myself against the shower wall. I had to wash my soles. I had been in the garden with sandals, and knew they were stained brown from the dirt. But how to do this? I couldn't balance. Couldn't reach down and lift my leg. I remembered the days when none of this was an issue. I remember the ease of lifting my beautiful legs to make sure my feet and toes were clean and shiny. So I threw my plastic scrubby on the floor of the shower, stepped on one side with one foot, and rubbed the other foot across the top of the free side of the scrubby. Repeat with other foot.

Mission accomplished?

Easier said than done.

Just keep on keepin' on...

Wednesday, November 27, 2013

MS - Congratulations and Best Wishes (Part 7)

It was a very cold May that year. I had been racing through my wedding checklist, running back-and-forth from our condo to the Salem reception location, making arrangements with vendors for our wedding day. I never realized how much energy it took out of me to coordinate these details. But, I was still going. No new manifestations of MS had appeared. In fact, I didn't think about it at all.

The day we married, it was raining. All the guests had arrived from around the country.  I was thrilled and nervous, but excited about this next step in my life. I was crying. The hairdresser who was prepping my hair for the day said that rain was good luck. That was not the reason behind my tears. To this day, I'm not sure what prompted the tears - wedding, family, stress, or rain. Regardless,  a strange foreshadowing of events yet unknown.

The wedding was great! We celebrated the wedding and reception in a beautiful, historic building in Salem. Incredible location - great party - exciting band - wonderful guests! We partied until the early hours on Sunday, both collapsing from exhaustion in our room that morning. We woke with heavy heads, and packed up for our drive to Maine, honeymoon, and a little relaxation.

It rained on our honeymoon. Not the pretty, soft rain, but ugly torrents. We left early to drive home.

It was nice to be home again, and out of the business of planning our wedding, but the sea of work that met both of us was an unexpected surprise. In the remaining years between our rainy wedding and the turn of the Century, we would sell the condo at a loss, move into an apartment briefly, buy a beautiful, old, stately Victorian, change jobs and get on each other's nerves. I noticed that the stressful moments we were juggling, took me down a path of exhaustion that was new for me. I was frustrated, happy, sad, confused, lonely. I was looking for a key to start life moving in a positive direction, but felt like it didn't exist. All I saw was a maze of doors and locks, with no signs to tell me which one would be opened by the key.

Thursday, November 7, 2013

MS - Stress, Marriage, Wishful Thinking (Part 6)

Life was good. We had our condo, we had adopted two new kitties - Burt and Ernie, I was making decent money and my partner was making his move breaking into the Financial sector. He had finalized his Master's Degree and wanted to extend himself into an area where he could exercise his financial learnings and help people position themselves for the future. We were happy, but I was still waiting for the day when our relationship was more than 'loving partners'. I wanted to get married, but he was not as enthusiastic. So, we continued to live and enjoy life. But, I harbored a quiet stress.

About that time, I developed what I believed was Carpal Tunnel Syndrome. As a technical writer, I was always typing on the keyboard, so I didn't really pay much attention to it. I just got wrist supports and continued on. Looking back, I wonder if that was a signal that all was not completely balanced in my body.

I was getting busier at work. My partner and I  tried to make the most of our weekends, but I was always attached to a pager for customer emergencies. The demands on us were growing.

And then it happened. After 4 years of being together, he proposed! I was in shock, happy, and bewildered. After so many years of hearing his reasons for NOT wanting to get married, I could not understand his change of mind. But, he was true to his word - we set the date, and moved forward. I was still not presenting additional MS symptoms, so I started to believe I had beat the odds.

The day we set for our wedding was on a Saturday, the 13th of the month, in Salem Massachusetts. I don't think the odds were in my favor.

Friday, August 30, 2013

MS - Reality, Denial and Life Continues (Part 5)

I guess I was running away again. When I asked about how the MRI brain scan looked, the doctor said, "Your brain looks older than it should." My return comment with a wink was, "That's because I'm so wise." And I didn't think about it again.

My life went forward. I loved the "hot potatoes" I had to catch at work everyday. I had reached a Manager position in the Telecommunications Start-Up firm I joined, responsible for resolving urgent customer issues, and overseeing the Documentation Dept. I was at work before 8:00 AM and spent many nights watching over the corporate System Backup process with the Engineers until 2 AM. As far as I was concerned, it was insanely, wonderfully crazy. I was learning so much, meeting so many different groups of people, traveling to client sites, staying energized with the small and large successes that were created and delivered as a result of the work I was doing with my teams. They were a wonderful, diverse group of very smart Engineers and Writers, and charged me up with the 'magic' they were able to create and deliver! It remains a very happy period of my life.

My personal life was also changing. The relationship with my boyfriend continued to flourish, so we decided to make the move towards a more serious commitment. He moved into my condo - we could share expenses and save money. He was also a gardener at heart, and loved to work with me on expanding the beauty of the condo property. Since the condo used to be an old farmhouse, we were lucky to have a small amount of condo-owners and a large private yard. We planted trees, roses, perennials, annuals, and he even created a space for the vegetable garden I had dreamed of. The happy times continued.

My MS-like conditions continued to stay quiet, so I believed all was good with my future health. It was 1994. There were clouds looming on the horizon that I couldn't see.

Friday, July 26, 2013

MS - Back to my life? (Part 4)

It was a glorious time! My eye recovered (almost) completely and no more patch was needed. I went back to work at the insurance company. I went back to college (nights and weekends) and graduated with my MBA. I found a part-time position teaching Business Communications as an adjunct college professor. I found the courage to leave the insurance company and obtain a position as a writer for a software firm, and then found enough courage to leave that position to leap into my first role as a writer/manager in a startup software firm. I bought my first Condo (A property owner - yahoo!). I learned to love baseball and the Red Sox. I learned how to ski. I travelled with my friends around the US, and I traveled back-and-forth to England and Germany to see family. After many fits and starts with romance, I finally met a man that was smart, funny, and sent me letters and called me to talk and discuss personal and world issues - we had yet to have a first date.  It was a wonderful life!

It had been 6 years since I lost the vision in my left eye. The likelihood of me developing this MS illness was getting more distant as each day passed...

And then, the rug was pulled out from under me!

I was talking to my new love on the phone in the condo dining area. Suddenly, I noticed that parts of the vision in my right eye were 'milky' - just like what I had experienced 6 years earlier in my left eye. I found this amusing as I described my changing field of vision to my friend. He and I had just set a date for a first 'official' date in one week (he lived at a distance, so arrangements had to be set). I was starting work at the new software start-up in 10 days, and my mortgage payment was due. Why not find humor in the sad position I found myself in with my vision?? The call ended and I called the hospital. An appointment was set for the next day.

I drove to the hospital Neurology center, and was immediately taken to a back room where this long 'coffin-like' machine stood. The doctor informed me that this was an MRI (Magnetic Resonance Imaging) machine. MRI is a technique used in radiology to 'see' detailed internal soft structures (e.g., the brain) of the body than are not possible with x-rays. I didn't realize at that time that my journey with MS would touch upon key historical moments in the scientific discoveries that would come to further MS diagnosis and treatment. 

When I initially came down with Optic Neuritis in 1984, there were no MRIs, only CAT Scans. But I've come to discover that CAT Scan technology was a necessary step in the growth of MRI technology. As presented in the History of MS, by Loren A. Rolak, M.D., Marshfield Clinic, Marshfield WI, "CAT scanning technology was refined to produce the MRI (Magnetic Resonance Imaging) scan, which shows the brain in greater detail. The first MRI scans of people with MS were performed in 1981 by Dr. I R Young, in England. By 1984, it became apparent that MRI could actually see MS attacks within the brain, including many which did not cause any symptoms. By 1988 sequential MRI scans changed the entire concept of MS by showing that it is a constant, ongoing disease even though relapses with symptoms may appear only sporadically.

The 1980s may legitimately be called the “treatment decade” in MS. There was an explosion of new drug trials. Guided by the National MS Society, scientists reached a consensus on the design and conduct of research for new treatments, and dozens of different therapies were tested in attempts to control or cure MS. Major clinical trials conducted during this decade finally found the first drugs in history shown to affect the course of this disease. As the final decade of the 20th century approached, the Congress of the United States made a special effort to accelerate medical research. Recognizing theparamount importance of neurological disease, they designated the 1990s as the “Decade of the Brain” and purposefully funneled funds, time, and talent into the treatment of illnesses that affect the nervous system. Multiple sclerosis benefited enormously from these efforts, and an explosion of drug trials occurred during this period."

So, I was getting my first MRI - knocking sounds, tight quarters and MRI Contrast injections - and I was afraid of what this process would uncover. Of course, no conclusion was presented that day. It required another visit to the Neurologist to find out that it looked like I may have MS, but it would require me to undergo a spinal tap to reach a definitive conclusion. 

No thanks, I'm too busy.

I walked out of the clinic and stepped back into my 'non-MS' life. Funny thing, I was still taking the vitamins that I had been given during my initial run-in with Optic Neuritis. I think part of me knew that my sunny days could get cloudy in the future.

Thursday, May 9, 2013

MS - Finding Daylight (Part 3)

Germany had always been a refuge for me. My mother had been born and raised there, and my Grandmother and aunts were still alive, my cousins were great friends. So my flight from England to Germany seemed as natural as my prior trips from Boston to Germany in earlier years.

I landed in Frankfurt and hopped on a train to Fulda to see my Grandmother - my Oma. It was so wonderful to see her! She made schnitzel in honor of my arrival, and already had a list of Homeopathic Specialists she wanted me to see for evaluation. It was such a welcome relief to have family helping me find (what I hoped) were alternate theories to this terrible prognosis. You could say, I was in my initial stages of denial.

My visits with each specialist went forward successfully. They looked into my eye, confirming what the doctors at home had told me (inflammation of the Optic Nerve); but, they also gave me specific liquid vitamins to take with names I never heard before. They also told me to reduce my intake of bread, cheese, milk and sugar.  Being in Germany, that was not an easy feat - the bread pastry, cheese and beer were gastric treats I craved. So, once again, I denied this reality, justifying my behavior by continuing to take medication and keeping the patch on my eye.

I stayed in Germany for 10 days, visiting relatives and friends, laughing and talking, and was able to regain the German accent I had in college. I also took a chance. I lifted the patch on my eye during the day to see if my vision had cleared up. To my complete surprise, certain areas in my vision were clearing up! I could see less of the milky wash that clouded my vision initially, and more of the life around me. My world was opening up again!!

Back to reality...

Wednesday, February 13, 2013

MS - The beginning I didn't believe (Part 2)

So, I ran away.

With a confirming note from the doctor in hand, I went in to my office, and let them know about my blindness in one eye, and that I needed to take a month of rest. Support for my condition came from all sides.

I gathered my things, and happily left the building.

I went back to my apartment and cried and walked and cried. After a day of feeling sorry for myself, and using way too many Kleenex, I shook the tears from my face and took action. For three days I exercised like a caged mouse on an exercise wheel. I went to the park and lay in the sun. I ate fruit and veggies. I danced in my Living Room. Alone. I called friends and family. I listened to Yes. I thought somehow, these random acts would change reality. But, they didn't.

So, I called my English beau, booked a flight to England, and shook in my sandles while waiting for the next shoe to drop.

After one week of waiting, the day finally arrived!

I stepped onto the plane and flew to England - a country I had only seen from the air in prior years. I landed in Gatwick, and was greated by my English love. I enjoyed a wonderful warm, relaxing and sunny vacation. I walked through the gentle countryside, visited museums in Bath, Bristol and London. Ate English lunches of cheese, onions and beer, and sweetened my perspective with late afternoon treats of strawberry scones and whipped cream, washed down with a pot of tea. We walked among the stones at Stonehenge (before security was an issue), rode in double-decker buses, and rode on motorcycles down the East coast of England. It was wonderful! All the while, I kept the patch on my eye. No peeking, except for the evenings when all was dark.

I then called my Grandmother in Germany to let her know the state of my health. She asked me to come to Germany and have some of her Homeopathic doctors take a look at my condition. I wished I could have extended my stay in England, but work-day reality intervened, the time was right, and my condition was stable. So I bid my beau goodbye and hopped on a plane to Germany.

I ran away again.