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Tracey Lynn Caissie (Foster)
 Home: Saint John, New Brunswick, Canada
Age: 31 years old
Diagnosis: Relapsing-Remitting MS in June 2004
Occupation: Customer Service Representative
MS: I can’t believe that these 2 letters bring out so many feelings in me: fear, anger, frustration, shame, pain, numbness, and many more. My diagnosis seemed to explain things, weird things, that had been happening to me over the past 5 or 6 years– constantly feeling tired; not having the same level of energy that I used to; having little or no attention span; my clumsiness in that I was always dropping things and tripping/falling; my vision problems where I had to wear glasses for a few months over 5 years ago – to mention just a few of the problems.
My first major “episode” started Saturday morning, April 25, 2004. I woke up that morning with tingling feet; it was a very weird feeling like they were half-asleep that lasted all day. The next morning, my feet were pretty much numb and the tingling moved up my legs. Things progressed even more by Monday morning – my feet were NUMB, my legs were NUMB, and I had almost no feelings or sensations from the waist down (I could not even tell if I had to use the washroom). I thought it was E.Coli poisoning or something like that as we had a water boil order in the city that I had not heard about until after I had drank lots of water and made a pitcher of juice. I was definitely worried but I never thought it was something as serious as MS; I did not even know what MS really was at that time.
Monday night, I went to the hospital at 7:45 p.m. The hospital was quite busy that night. I waited all night, and I did not get to see a doctor! I was there for over 10 hours, pulled an “all-nighter”. I checked myself out at 5:30 a.m., as I had to get home and get ready for college. Later that day, my father picked me up and took me to the other hospital for an examination.
I was only at the other hospital for about 20 minutes before I saw a doctor. He examined me, did some quick tests (poking and scratching), and he sent me for an MRI the next day. Pretty quick for an MRI as I’ve learned that most people in our city have to wait for 3 – 4 months unless it is an emergency. I had my 1st MRI the next day. I had a total of 5 MRIs done within the next month and a half: my lower back, my mid back, upper back done with axial, my upper back done with dyes for contrast, then finally on my neck and my brain. I had to wait 3 weeks for the results of the last one – the MRI of my brain. My parents went with me to my GP who told us the news: I had MS. My brain has multiple lesions and scars. I was in shock. I had no idea what this meant. I’d heard of Multiple Sclerosis and of MS, but I had no idea of what it truly was. I only shed a few tears that afternoon then went back to work as I was in training for a new job. I think my parents took this news much harder than I did at that time. I am very fortunate in that I received my diagnosis very quickly – only 2 months since my attack.
My husband David (boyfriend at the time of my diagnosis) has continued to love me, support me, and take great care of me. He is a wonderful guy! Last January, my cat Spencer collapsed in the dining room, and he was gasping for air. We rushed him to the vet, but we lost him that night as he had a heart murmur and his heart failed. That was incredibly painful for me. We have 3 other cats, but Spencer was the “mommy’s boy” and he was just so loveable. We returned home that evening and I was completely upset and crying uncontrollably. Then David got down on one knee, pulled a ring out of his pocket, and finally proposed! Wow! It took 8 years for him to “pop the question” but I guess it is better late than never. Of course I said, “YES!”
We were married 6 months ago, on August 13, 2005. We had the most beautiful wedding ceremony at my Uncle Tony and Aunt Cathy’s beach house in St. Martins by the water. All of our closest friends and family members were with us. It was so incredible! The ocean was rough that day and you could hear the waves crashing loudly against the shore. It was so perfect, and I wouldn’t change a thing.
The emotions of being diagnosed with MS have been overwhelming. I did not know much about the disease; all I could picture was me being in a wheelchair. It was very scary. My parents, friends, and family were extremely supportive, and I truly appreciate everything they did (and still do) for me. I don’t think I could have gotten through my first year and a half without their love and support.
I went to my neurologist a few weeks later and had to decide which DMD (Disease Modifying Drug) to start using. My neuro did not give me any input, as he did not want to influence me. I finally decided to start using Rebif. I was terrified of needles and now I am a pro! I’ve been injecting for just over 1 year now, and it is funny how much I have changed in this first year, especially mentally.
I have several small problems that I deal with almost every day. My left leg is a little bit spastic and I can feel and see my muscles constantly twitching. Not a major problem, but it is definitely annoying. I deal with tiredness and fatigue on a regular basis; my doctor has put me on Alertec (Provigil, Modafinil) and that seems to be helping quite a bit because on the days I forget to take these little pills I am very tired and not able to think right. I find that I do get confused easily and sometimes I feel so unintelligent. That is very weird for me because I only graduated from college a year and a half ago at the top position in my class. I have a few other problems that I have to deal with at times, but considering what others with MS have happening with them, I should feel very fortunate that I am doing as good as I currently am.
There was not an MS chapter in our city when I was diagnosed; therefore, I had to do a lot of research, thank goodness for the Internet. I borrowed books from the library, and I bought some books from the bookstore. My aunt Cathy lives in another city so she went to the MS chapter in her city and got some books, brochures, and information for me. I tried to learn as much about the disease as possible, but since there are so many different paths for the MS, and everybody has different experiences and symptoms, it was very scary seeing what might be in the future for me.
We have since started a chapter here in Saint John. I am currently the recording secretary and we’ve only had 4 meetings so far, but we are doing well so far. We are working to promote awareness of Multiple Sclerosis in our city and community, and we are assisting the National Association with fundraising activities. In November, we sold Christmas cakes and chocolate truffles in support of MS. This year we’ll be doing our first MS Carnations Campaign, when we’ll be selling bouquets of carnations and we’ll have a booth set up in the city market and in one of the shopping centres. May is also the annual MS SuperCities Walk. I had a team last year called the “Krazy Katz” which consisted of me, David, my mother, my father, my aunt Cathy, my uncle Tony, and my cousin Kelci. This year I’m hoping to have an even larger team in our walk.
Last year our province did our first RONA MS Bike Tour, which was a bicycle ride 160 kilometers through the province, 80 kilometers the first day, then back to the starting line (another 80 kilometers) the second day. I volunteered for this event on both days and was a flagger; I was on the side of the road with a flag directing the cyclists what direction to go. My brother Sean was on a team through his work, and he rode his bike in the event. Gotta love him! This year I would love to be able to join the cyclists, and I am going to try and do the first day of biking. I’ll probably have David follow me on his motorcycle just to make sure I’m okay.
I keep myself busy with my husband, and with our 3 adorable cats – Theodore Garcy, Preston Percival, and Louie Parker – who are all very spoiled and loved! I play darts twice per week: in the Ladies’ City and District and on Friday nights at a local money shoot. I’m not that good at darts, but I truly love to play. I’ve only shot the “180” (a perfect darts score) 4 times in my life, but I guess that it’s better than never have hit it at all. I play in all the tournaments I am able to play in.
I’m trying to be as positive as I can be, but sometimes it is so hard to stay happy and positive. My family and friends are always there to help me out, even sometimes when I don’t feel I need any help. I’m trying to take each day as it comes, as one never knows what tomorrow will bring. “When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” – Helen Keller.
Please visit my Web site to see more photos at: http://tracey-lynn-caissie.piczo.com
“I can only think of one thing greater than being happy and that is to help another be happy, too” – Jim Thomson.
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