Monday, May 5, 2014

My New Life Starts

I spent a few weeks in Arizona, then came back to New York to start looking at what clinical trials were going on. I had met a guy in Arizona that I really liked but I knew that I was going home to New York, so we just became friends & nothing more. I had found a clinical trial for a new oral medication, so I inquired about it & they put me on the list since I met all the criteria for it. Then they kept pushing the start date back further & further, so I decided to start looking at other options. I came across another one that seemed more promising than that one & made the inquiry. Wouldn't you know it was in Arizona. They asked me to come out for the testing to meet with the additional criteria, so I packed my bags & off to Phoenix I went.

Dad met me at the airport & this time I didn't have the apprehension that I did the last time. We went to have lunch at one of our favorite places & then home to get me settled in. That evening we went to a meeting & it was like being at home. Familiar faces & friends, I couldn't ask for more. Two days later I went for my appointment. They were wonderful, but due to an injury I had & they had done a cortisone injection into my knee, I had to wait another 30 days for them to do my blood work. So instead of going back to New York I just stayed put.

The days seemed to fly by. We were always doing something or going somewhere. I finally went for the blood work & the had a really hard time getting it all due to my crappy veins, but 8 sticks & 20 tubes later we got it all. Ugh!!! I met with the Dr again & he proceeded to tell me that if I do participate in the trial that I need to come in every 6 weeks for screenings & such. So now it was decision time for me. I went home & talked to Dad about it. He said "Well kid, it's your choice what you want to do. I can't make that decision for you." A lot of help he was. I called my mother & told her about my dilemma & she said "You want my honest opinion" I said "Yes, I wouldn't be asking if I didn't". She said "Pack your stuff  & go! Honestly you're no good to yourself or anyone else being here in New York. Physically, mentally, emotionally & spiritually you're better off out there." Of
course my first thought was "thanks mom love you too" (dripping with sarcasm) but I knew she was
right in a lot of ways. The warmth agreed with me & the winters in New York were brutal on me. I came back to New York & started packing.

I moved out to Arizona in January of 2007. That guy that I had become friends with the previous year, well we got seriously involved. Charlie & I had a fairy tale romance so to speak. At the end of March I flew back to New York for my fathers wedding. While I was in New York Charlie & I had several phone conversations & I got the feeling that he was planning something but all he would tell me was that he had a surprise for me when I got back. I couldn't wait to get back anyway, I missed the warm weather, but most of all I missed him. I left the day after the wedding to go back to Arizona. Before I left I had given Charlie a coin that I always kept with me that had its own holder that I kept on a keychain & told him that it was his insurance policy that I would be back.

When the plane landed I could barely contain my excitement to be back home & to see him. I couldn't wait to get off the plane. As soon as my feet hit the airport floor I started running. I didn't have to call, I knew exactly where he was & I ran right to him. It seems so silly looking back at it now. It's almost like all of those cheesy romance movies you see when couples see each other when one comes off the airplane. I'd do it all again if I could too. It was like no one else in the world existed except the two of us at that moment. We kissed & hugged & we walked down to the baggage claim area to get the rest of my luggage. We went outside to have a cigarette since it was going to be a little while for my luggage. We stood there talking & laughing, then he reached into his pocket. He got a really serious look on his face & he pulled out the coin with the coin holder. He looked at me & said "Since you're back, I guess I don't need this insurance policy anymore." Then he put it in my hand. He said "but I would like to make a lifetime policy" & he turned the coin holder over in my hand, got down on one knee & said "will you marry me?" In my coin holder was an engagement ring along with my coin. At first I couldn't say anything but shake my head yes as the tears started to come down my cheeks. When he got up & put his arms around me, I knew that I was marrying the man that I had always been meant to marry. I was marrying my true love.

We went in to get my luggage after he put the ring on my finger. We got my bag & went to the car. I
was smiling from ear to ear & felt like I was living in my own fairy tale. We went & had dinner, then he brought me home. Dad was still awake, so we told him the news. He was happy for us & of course he had to make a wisecrack comment "good now you can put up with her!". We all laughed. We went to see his mom the next day & she was happy. Especially when I asked her to go dress shopping with me. Now we just needed to plan a date.

Thursday, February 16, 2012

Denial & Acceptance

I awoke in the morning to the sun shining through my bedroom window & thought "despite the cold it's going to be a beautiful day". I had a hard time getting out of bed & when I went to stand up & walk my right side was weak & I almost fell. I made my way to the bathroom & looked in the mirror. Having been in & around the medical field most of my life, I started to assess my condition. I did the smile test in the mirror & saw that the right side of my face didn't move with the left side. I tried talking & my speech was slurred. My immediate thought was that I had a small stroke. I tried to get a hold of my neighbor, but they weren't home. I got dressed in sweatpants & sweatshirt, since it was the easiest thing to put on. I went to the hospital thinking that I was going to be spending a couple of days there & that I'd be put through the ringer with all the tests they'd run. They brought me right in, started assessing me & whisked me away to radiology.

After what seemed like hours, a female Dr came in & introduced herself. She did her assessment of me & said "The good news is that you didn't have a stroke." My response was "What's the bad news?" She said "You have multiple sclerosis." The tears began to roll down my cheeks. I don't remember what she said after that. I remember her talking to me & I just nodded my head. The nurse came in with my discharge papers which included a prescription for prednisone. I had called one of the girls that was going to pick me up & told her that I was at the emergency room. She said she would pick me up there.

I got in the car & we left the hospital. I explained what had happened & what they diagnosed me with. I was still in shock over it, so I was disconnected from it. We headed to the meeting & I seemed numb both physically & mentally. We went to the diner afterwards for dinner. I felt a little better, but the only thing that kept going through my head was "Why did I bother to stop drinking & drugging when this is only going to kill me?". I was hating life, doctors, hospitals, people & most of all...myself.

I received a phone call from a dear friend who I consider a dad to me asking what was going on. I told him what happened as well as the diagnosis & what was going through my head. We had quite the conversation & him telling me what I needed to hear & not what I wanted to hear. The conversation ended when I hung up on him, because I didn't want to hear what I needed to hear & knowing that he was right. Dad called me back the following day & said "You've had enough time to sit on the "pity pot", It's time to take some action!". We discussed my appointment at the Mayo Clinic in Rochester, MN & after a session of 20 questions the decision was made that I would go to the Mayo Clinic in Scottsdale, AZ instead. I knew it was a better choice because I'd be with people I loved & cared about & vice versa.

I made the necessary phone calls, planned my trip out to Arizona with no definitive return date until I knew what the doctors at Mayo Clinic wanted me to do. A little over a month later I packed my bags to fly out to Arizona. In the meantime, I went to meetings, did my service positions & made the best of the situation as much as I could. I kept talking about the fear that was taking over me with this new disease that I was dealing with & the overwhelming emotions that came along with it. I was angry, sad, happy, confused, anxious yet also relieved. I went to the airport, got on the plane & tried to breathe through all the emotions. The stewardess came around with the drinks & for the first time in many years I contemplated having a drink. The thought was there but the answer that came out of my mouth was "Water & coffee please". The stewardess looked at me with concern & asked if I was ok. I said "not really but I will be". She tilted her head a little & looked down. I wasn't quite sure what she was looking at until she said "I like your pendant. Don't worry I've got you." then she leaned towards my ear and said "Nothing happens by mistake. You were meant to be my passenger today." she stood up straight & smiled. Fighting back tears, I looked at her & said "Thank you!" When she walked away I touched my pendant & realized I had my recovery pendant on. I closed my eyes, took a deep breath & quietly thanked the universe for putting me on that particular plane. When the plane landed & I got off the plane, the stewardess was at the doorway in the airport. I walked over to her & smiled. I said "thank you for being here today. I'm not sure I would have done this the right way had you not been here." I gave her a hug & whispered "I know we have many of the same friends, just different faces & places.". She said "Yes we do & now we have one more to add to those friends. Be good to yourself."

Dad met me at the airport. We grabbed my bags & off we went to the house. We talked along the way as I took in the sights of Phoenix, AZ. It was beautiful. I felt alive for the first time since my diagnosis. We got to the house & his daughter & granddaughter met us outside. His daughter & I hugged & laughed when he said "I'm in trouble now aren't I?". We both looked at him & said "you bet!". She's like a little sister to me & he's been like a dad for a long time. So in some ways it was like a mini family reunion. Her & I caught up on the current events in our lives as we made dinner together. My niece kept dad busy, which kept him out of our way in the kitchen since he liked to take over the kitchen no matter who was cooking. I was feeling a little less emotional & didn't feel like I was on an emotional roller coaster anymore. Over the next couple of days, we went out & I got to see a lot of the surrounding areas of Phoenix. I couldn't believe how beautiful it was. I had been through Arizona a few times when I drove a truck, but most of the time I drove through it at night.

The morning of my appointment came & I was a bundle of nerves. Dad went with me & sat in the waiting room for me. I saw the dermatologist first & found out there was a misdiagnosis with the lab in NY. I was relieved, but that also meant a lot of changes in how I was medically treated. They had me see the MS specialist also & I liked him. He told me that I couldn't do any of the injections due to the skin condition I had, so the current disease modifying drugs were out of the question. He suggested that when I got back to NY to start looking into the clinical trials for the oral medication. He gave me a bunch of paperwork to read & things to look at. I thanked him & walked out the door with a smile on my face. A sense of relief washed over me & I felt like I was actually breathing for the first time. Somehow I didn't feel so alone anymore nor did I feel like it was the end of my life. I was feeling like I was beginning a new life, with a new perspective & on a new mission. It was time to start living again.

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.