Thursday, December 15, 2011

The MS Diagnosis Process

I went to see the neuro-opthalmologist. He decided to put me through the multitude of tests. He ordered a CT scan, an MRI, a visual evoked potential, a spinal tap & a bunch of blood work.

After all was said & done, he sat down with me & proceeded to tell me that I had MS. Having been in the medical field for so long, I knew there was no cure & that the prognosis for recovery from it was nil & none. He decided to put me on a once a week injection called Avonex. I would do the injection Friday evening & on a good week I'd be ok by Wednesday. I was practically non-functional. After almost 6 weeks of doing this & my body's reaction, I told the Dr that I refused to do it anymore. He then put me on a daily injection of Copaxone. I hated doing these injections. The injection sites would always get enflamed & I'd sit there with an ice pack on the injection site for at least an hour afterward. After a couple of months, I was getting discouraged as well as upset with having to do these injections every day. I decided to get a little more proactive.

I called my original neurologist in Long Island & explained what was going on. He asked me to send the  CT scans & the MRI's so that he could compare them to the ones he had. I had the records sent to him & he called me about a week later. He told me to stop taking the medications immediately. He said he compared the current films to the ones he had & that there was no difference in them. He said that he didn't believe that I had MS. I thanked him for his help & took his advice. I stopped the medications & felt better being off them than I did on them.

I had started a web hosting & web design business in 1999 & had continued growing my business through all of the MS chaos. I was also moonlighting as a bartender. I needed to make changes in my life & one of those changes was leaving the relationship that I was in. He & I were partners in the web business, so I decided to sell out my side of it. I continued bartending, except now I was full time instead of just moonlighting.

A year later I decided it was time for me to get out of the bar & do something more with my life. I had started doing sales which was all commission based & I was doing a lot of traveling. I loved the traveling, but it seemed more work than it was worth financially. An old trucker friend of mine had rolled into town & I met him at the truck stop. We sat down & had coffee. We caught up on things & after telling him what I had been doing, he asked if I was at least getting reimbursed for travel expenses. Of course my answer was no. He said "Why don't you get your CDL & drive tractor-trailers?" I looked at him like he had lost his mind. I said that I can't imagine myself getting in & out of a truck at a truck stop, especially at night. We discussed it further, but I had a rebuttal for everything.

Two weeks later, I had worked the night shift at the bar & it was almost sunrise so I went up to the lake to watch the sunrise. I parked my car & walked onto the pier. As I stood on the pier watching the sun come up, I started to question my life & what I was doing with it. It was that window of clarity & reflection that we are sometimes graced with when it's necessary & we allow ourselves to do it. I thought about my conversation with my truck driver friend & the question that went through my mind was "What are you afraid of?" I had thought about driving a truck years ago when I was working at a truck stop while taking my first EMT certification course. Back then there were very few women that drove a truck & those that did were partnered with their husbands. I made the decision that day to get my CDL & start driving.

I went home & called a couple of the training schools. I went over to the one school & signed the paperwork to get started. I graduated the school top of my class & was hired on by a well known company. I went to a family reunion in the Poconos & out on the road I went. Traveling across this beautiful country, not to mention getting paid to do it.

Three & a half years later, I decided to come off the road. I needed more stability in my life & even though I loved being out on the road, I felt as though I was disconnected. I actually had a thought cross my mind one night as I was driving that scared me enough to make my decision to come off the road easier. So I came home to New York.

I had finally gotten settled in a one bedroom apartment & was adjusting to staying in one place instead of being all over the U.S. in various cities & States. I went to bed on January 10th looking forward to the following day. I had plans with some of my girlfriends that included shopping, dinner & a meeting. Little did I know that my body had other plans for me when I awoke the next morning.

Tuesday, December 13, 2011

Life Before MS

Life was normal, or at least what I thought was normal. I started out volunteering at Staten Island Hospital, because from the time I was a little girl I had always wanted to be a nurse. I got my first EMT (Emergency Medical Technician) certification at the age of 18 & was employed at a nursing home as well as an ambulance company in Long Island. Along with that I was attending classes for nursing. I was on my way to having my dream come true. I guess you could call me an over achiever, but I've always been an all or nothing kinda girl.

Due to my perceived need to achieve my goals quickly, I put my own health in jeopardy. I had been taking care of people all my life & I was still doing it. You would think that after being in and around health care for most of my life, that I would know that I had to take care of myself. I never really learned how to do that though. My work & class schedules were rigorous & I was getting little to no sleep. I had my first heart attack at the age of 19. As I laid in the emergency room, the only thing I thought about was that I needed to be at work at 7am & that I was too young to have a heart attack. I wasn't doing drugs, so that couldn't be the reason. It never crossed my mind that my diet during this time had been coffee, cigarettes & maybe a bagel or slice of pizza once in a while. I signed myself out of the hospital AMA (Against Medical Avice) & went to work. Not too long after that I ended up with a back injury & it put me out of work permanently a few months later.

I had gotten pregnant & after my son was born it was expected that I marry his father, since I already had a daughter out of wedlock. After 13 months of an abusive marriage, I finally found the courage to get out of it. Of course it wasn't without great pains due to the fact that I had to get out & leave my son in his crib sleeping. I had to keep him safe & he was safer there in his crib than in my arms trying to escape my husband trying to kill me. Throughout that time I had been seeing a neurologist for my back injury as well as migraines. I had been having migraines since I was 9yrs old. It took many years of trial & error to find something to keep them at bay. I had moved to various places & landed in New Orleans in August of 1999

In May of 2000, I went to pick my daughter up at the bus stop. As I sat there waiting, my vision in my left eye got blurry. I rubbed my eye figuring it may have been my makeup & when that didn't work, I looked in the mirror but couldn't find anything. After my daughter got in the car, we went home & I called my Dr. She told me to come in immediately & then sent me straight over to the ophthalmologist for further tests. After he examined me, he sat in front of me to tell me that he believed I was having an episode of optic neuritis & that it's usually directly linked to Multiple Sclerosis. Off to another specialist, this time a neuro-ophthalmologist.