Living with Multiple Sclerosis - by Yerti

Hello my name is Yerti, and I have MS.

I have had no problem disclosing those words. It was perhaps easy because in the beginning no one believed I was sick. " You look so good," they all said.

It started with menopause. I saw many doctors for "strange ailments."  They all said it was early menopausal symptoms - I was not yet 50. I was taught to believe in doctors. They had gone to university after all - something I never did! Over a year later I met my first neurologist, Dr. Sullivan in Springfield, Massachusetts.  He was recommended by a friend, and at my husband's insistence, I went to see him. Unbeknownst to me, my husband feared I had a brain tumor.

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After an MRI and Evoked Potential Tests, Dr. Sullivan was pretty sure I had MS. He asked my husband to accompany me to his office. He started by saying: "I have good news and bad news."  I asked him to start with the good news. "You do not have a brain tumor!"  Thank God, I thought. But I had Multiple Sclerosis. I thought it was the same disease that Jerry Lewis raised money for on television.

The first couple of days after the diagnosis I educated myself on this strange disease. I learned there was no cure. I learned it was progressive. I filled in a lot of the blanks.

That was 1994. I was 51 years old. I had lived such a tremendously lucky life.  My first self-assessment after the diagnosis was that I had done almost everything I wanted with my life already. From age five, I told everyone who asked what I wanted to do when I grew up: "I want to be a stewardess." Because when I was five I flew in an airplane with my parents for the first time. My mother told me later I never took my eyes off the stewardess. When playing with other kids, I created an aisle between the chairs I put up so I could serve them!

I indeed became a stewardess. I loved my life. Then, on a Scandinavian Airline Systems (SAS) plane, somewhere between Copenhagen and Stockholm, I met Mister Right. I had a dream wedding.  We had a child.   We lived in different countries. We skied, played tennis and hiked exotic mountains. We traveled and lived in fabulous homes. What more could I ever want out of life? 

I am an "UP" person so this little inconvenience of having MS is not going to get me down. That was my mindset in 1994. Since then I have humbled myself to accept the inevitable changes. After many support-group meetings I came to the conclusion that I am one of the lucky ones, but I take it one day at a time.

This disease is very unpredictable. Some days are good, and some days are not so good. I have resisted going on any of the medicines approved for MS. I refuse to inject myself, limit my daily routine or have the side effects that come with a medication that is not a cure only an inhibitor. We call the drugs the ABCs. That stands for Avonex, Betasteron and Copaxon.

As I write this we soon will have another drug option called Rebif.  It was tested in Europe with very good results. The doctors took people in the control group off of placebos when results were so good.

I still walk, but not as steady and balanced as before. I initially started a regimen that had been recommended by a Swedish doctor. That really made me feel in control!  I removed all 30 black fillings (AMALGAM) in my teeth. (My dentist was ecstatic!)  I also started a full nutritional program with mega vitamins, herbs and ERT (Estrogen Replacement Therapy).

What a difference! I forgot my cane and became very hopeful when my doctor's evaluation suggested that I might have a benign form of MS. Remembering that I had had my first "episode" in England in 1961 at age 18, I realized I'd been in total remission for more than 30 years! I never knew then that what I had was MS.

Let me explain. In 1961 I was in an Anglican convent, for the summer holidays. My legs got numb. The House Doctor that the nuns used said I did not have polio, which is what I thought. He asked me what had I done prior to the attack. I told him I had been on my knees scrubbing a mosaic floor in the loggia (outdoor patio). With the damp, typical, English weather he thought I had a cold or virus of some kind in my legs. They were "sleeping" and it felt like I had a shot of Novocain in them. It lasted for 3 weeks and as if miraculously!  I woke up one morning and the feeling was gone.

So, what we now think is that episode was infact an early warning of MS that went into remission for all these years.

Then after my diagnosis in 1994, I discovered Dr. Bornstein, a semi-retired MS specialist from New York's Einstein Institute, who was active in New Hampshire where I lived then. He became my doctor and took wonderful care of me until he died. He told me early on about new research in Israel on what later became copaxon.

Until there was further research though, he wanted me to take only vitamins and Primrose oil.

As the disease progressed, my biggest hurdle has been self-catheterization. After many urinary tract infections (UTIs,) I was told to cauterize myself in order to empty my bladder. I had trouble doing it and went to the nurse three times. At the third visit she said, with exasperation in her voice,  "Why don't you let your husband help you?" She was in her early twenties. "You got to be kidding," was my answer. "We don't have that kind of sex life."  So after about six months I finally got the knack of doing it.

Unbeknownst to me, I still had residue left after I went to empty my bladder.   The demyelination caused by MS often affects the motor and sensory pathways of the bladder.   It can vary in two ways:

1. The urine seems to want to come out too frequently and too easily.

2. The urine just does not seem to want to come out at all. The stream is weak or intermittent. That is my case. When you do not empty the bladder fully it causes infections.

This is common in MS patients.

But it helps to have a sense of humor about all this. Without it, I would not have survived.

I never will forget September 11th - for a totally different reason than most Americans. I was propped up in bed with all my trappings:  towel underneath me (to protect from spills), measuring cup (a large plastic one), the plastic catheter, and magnifying mirror. I was watching television while I drained my bladder. Between my spread legs I saw the second plane hit the south tower. There was a long pause in my urination. I was too upset to keep trying.

I have a scooter. I use it to go to the mailbox, about 300 feet from my house. A sticker on the back reads, "I think this is a Harley- Davidson."   I have a handicap sticker for my car. I have a purple walker and about 10 canes. One for every outfit! The trappings of a handicap can be your "social statement"!

My advice to anyone who cares to listen is the following:  Educate yourself about this disease.  Get a good doctor who takes the time to listen to YOU.  If you do not have humor in your life, surround yourself with laughter: read the comics, see funny movies and laugh every day until your belly hurts. Then every day say to the mirror: "I have MS, but MS does not have me."

 

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