Music: A big passion of mine

I saw this and had to share. I believe it with all my heart! Music is how I start my day, there is no replacement for the joy and soothing energy I feel to get me going. Happy Friday everyone!

CCSVI

With the tragedy and emotional stress of losing Tupper, came extreme fatigue and complete numbness in my hands. I still remember that feeling, as if I were wearing rubber gloves. Then came the difficult decision of cancelling my move to Banff. I couldn’t perform well and I knew it. I was on a steep decline. The decision not to move out West when I was so close to reaching my dreams gave me great heartache.  This disease seemed to come on with a vengeance and I couldn’t figure why.

Taking a leave from my current position, most of my days were spent sleeping. I was barely up for more than 4 hours at a time and those hours were not spent with much activity. With the most recent symptoms of leg pain in my shins, and in essence, leg lock, it became difficult for me to get around.  Climbing stairs was a challenge and would not have been possible without a rail.  I had many friends and loved ones giving me advice on anything they thought might work. All was so helpful except one comment that irritated me to no end. “MS is easy to manage…” Not knowing then what I know now, I wanted to slap them and scream “Look at me!”.

My research had led me to a new procedure discovered in Italy that looked promising for patients with MS. Could this be the end of my short journey? Could I get my life back? I became obsessed with the idea. The following months were spent at the computer looking for any new developments and post-procedure stories. It sounded assuring and made a lot more sense to me than just accepting my possible drug-filled future. Chronic Cerebrospinal Venous Insufficiency(CCSVI) started to become a popular topic with the news and medical community. Patients were passionate about wanting this procedure available in Canada. There were tons of stories going up on YouTube showing patients pre and post operation with most results looking very promising. This gave hope to millions.

After giving up hope then finding a procedure that relieved so many symptoms in others, I had been asking myself why this fate was bestowed upon me, why was I so lucky. Could my short reign of despair have a special meaning? The only answer I could come up with to all my questions was…..who knows.

After months of research, I was convinced this was something I had to do. I had found a company that was arranging international treatment for CCSVI. My next battle surfaced, finding the funds to pay for this extremely expensive procedure. I had come up with a decent argument to give my parents for why I thought this was invaluable.  Not only was my condition worsening as weeks passed but medically this made sense. Why could any other human being have angioplasty for a huge health risk, but put MS in the mix and the idea is thrown out? Shouldn’t anyone with a collapsed vein get treated? I know angioplasty is typically used for arteries but this abnormality with the veins deserves attention.

CCSVI would turn out to be a legendary experience that not only worked, but left me with irreplaceable, deep-rooted friendships.

I have MS?

My new life started with many unanswered questions, leading to several doctor appointments and eventually an MRI. The day I got the news, my Mom was with me as we sat in my doctor’s office. I will never forget the gasp then quiet whimper that came from her after we heard “They believe it is Multiple Sclerosis.”. I didn’t know what MS was at the time. My Grandfather had passed away from this disease long before I was born and he was rarely talked about. When previously asked about family medical history, the thought never came to mind to mention MS. I was startled, then it hit me. My Mom was crying, this had to be bad.  As we shared the news with my Dad that night,  tears were shed, me still not knowing the extent of this disease but knowing that I was frail for the first time in my life. Imagine telling someone the disease that took their Father now has a hold of their daughter. I dreaded two conversations; the one with my Dad and the next would be with my Grandma. I think I cried more for them than I did myself.

A meeting with the neurologist came next, who explained MS in a very dreadful way. He gave me an assortment of reading material, most of which was about disease-modifying therapies. Drugs that I had to inject myself with every week? Are you out of your mind? If I wouldn’t take Tylenol for a headache, how do you think I’m going to put needles into my skin that inject a drug on a regular basis? I thought he was exaggerating the disease just a bit therefore I did not take the drugs seriously. Learned through my environment, I down play any sickness.  As long as I don’t acknowledge it and keep busy, it will go away. Out of sight out of mind, right? There had to be an easy fix instead of depending on drugs.

Soon after the diagnosis my peripheral vision came back and the vertigo was gone. I had done a little bit of research and told myself that I had years to live a normal life and I had to just keep going with everything as planned. I had landed my dream job; a position in Banff, AB was waiting for me. My one-way plane ticket was purchased and I was supposed to fly out in the spring. Feeling excited and optimistic about my possibilities in Alberta, I never thought MS would run interference. My hyper type A personality had me stressing in preparation for the move. One thing you must understand about me is when I get excited or worked up about something, I take it to the extreme. Knowing now that that kind of mentality can be detrimental with this disease, I’ve learned to control it. You will hear more about that as I plan to explain many changes I’ve had to make later.

I was on a new adventurous path. The path to a cure via any alternative medicine I could afford. This started with seeing a naturopath, researching hyperbaric chambers, and getting acupuncture.  The most daring treatment I tried, prior to CCSVI procedure, was leech therapy. Yes, the things that suck your blood.  A friend’s Mom had told me about this medicinal treatment used in Europe that proved to be effective. Me, willing to try anything, was lucky enough to have a friend drive me to Montreal, QC where this was available. The leech releases many proteins which are beneficial for it’s feeding but also to the patient. The anticoagulant and anesthetic were two I witnessed as I know fairly well what both do. I had 3 of the little guys put on my abdomen, right above the liver. I have to say, they are smart and know exactly where to bite. The gross feeling of them slithering around stopped, leading to the very painful bite! The anesthetic eventually kicked in but not soon enough. Once they were done feeding, all puffed up with MY blood, they released their grip and rolled off me. Blood continued to pour out of me the entire night.  We actually had to buy maxi-pads and tape them to my stomach! We laughed the entire night at the thought of us changing my bloody maxi-pad hoping no one would walk into the men’s bathroom.  Now, aside from the tiny scars, large expense and uncomfortable sensation, I would do it again in a second. I felt restored and energetic for a couple days after, then it faded away. There is a sequence of treatments that need to occur to get the optimal effect…unfortunately, this barely employed girl did not have the means.  However, that was an experience I will never regret and truly enjoyed.

As weeks passed, my energy level had dropped and at the same time my dog, Tupper started to show awful symptoms of weight loss, lethargy and blood in his bowels. Hundreds of dollars later, I was told he had a mass that looked like cancer. There was a possibility that after thousands of dollars spent on surgery he MIGHT be alright. That was out of my reach and the poor thing was suffering. I made the decision to put him down, which I cry about til this day. It was a week before Christmas and I experienced the heaviest loss I’ve ever felt. He was my best friend who enjoyed every minute we spent together and helped me create many priceless memories.  Given the recent events, I probably took this loss harder than I should have.

My life was falling apart and I didn’t know what hit I would have to take next.  

Overture, without the music

This is a time in my life I rarely go back to. Many memories have been pushed aside as I look forward now and appreciate every new day. For the sake of my readers, I will journey back to illustrate my evolution.

Imagine yourself at the age of 27. You’re young, energetic, optimistic and naive. Dramatic life lessons are not even a fragment of a concern.

I have had MS for 3 and a half years. When you put a number on it, doesn’t sound that long. To me it has felt like a lifetime. A roller coaster of emotions and experiences, but most importantly a completely new life.

Instead of progressively getting worse, like I was told I would, I have progressively gotten better. I believe I have learned a few secrets and wish to share my story. Hopefully I can motivate while helping others see the silver lining.

Let me take you back to the beginning, when this all began.

I wanted to travel, see the world, most importantly spend my days outside. Never having the patience to sit in front of a computer all day seems ironic now. Free time was spent hiking with my gorgeous Labrador, exploring trails in any forest nearby. I was adventurous with very few fears. Times were great, with tons of fun-filled memories.

It started with  bad headaches more frequently than ever before, along with dreadful allergies. For a girl that never took Tylenol and rarely got sick, this was all new.

By spring 2009, my symptoms progressed, without me thinking too much of it. A good friend and I had committed to volunteering with Oxfam Trailwalker Canada. Not getting dealt the best time slot, we were working our stations overnight. I had noticed that my symptoms were strongest in the morning after I woke up, which I still question. This prompted me to pull an all-nighter.  Getting through the weekend was an experience we both enjoyed and laugh about to this day.

There was a trip planned for New York City in July, which I refused to let anything ruin. Remembering as I walked through Central Park, I noticed all the symptoms were gone! I did not know if all the physical activity from walking around the city had healed me or if this “thing” had just passed. Either way, I let it go. It wasn’t until I was back home, days later, suntanning when I noticed something wasn’t right. Known for being a sun-worshiper and loving everything to do with warm weather, many hours were spent “getting my tan on”. When I got my first headache and dizzy spell while tanning, I brushed it off as too much fun in the sun. Shortly after that day, I got hit with really bad vertigo, of course not knowing what to call it at the time. I will never forget walking my dog Tupper and thinking I must look like I’m drunk. The dizziness was so bad, walking a straight line was impossible. This is when panic, annoyance, and irritability began to overwhelm me.  Enough was enough, my doctor needed to find answers.

The last and final symptom came, forcing me to take time off work. My peripheral vision was gone, making everything a blur and the vertigo was much worse. Fear started to creep in. I couldn’t work, I couldn’t drive and couldn’t enjoy walks with my dog like I used to. What was happening?! Patience was running out the door. I was taken to emergency by my Mom where we waited for a CT scan. The emergency doctor, not thinking too much of these symptoms, put up the results. He explained that the little white clusters on my brain were calcium deposits, other than that he saw nothing wrong. We could only stare, waiting for more of an explanation but got nothing.

Given my poor balance, vision, nausea and uncertainty, I chose to celebrate my 27th Birthday at home.  With my closest loved ones surrounding me, thoughts of the past few months seemed irrelevant. Never thinking there was any possibility I would be diagnosed with a chronic disease. I now consider that day to be the last day of my old life.