Archive for October, 2012

Hope

Written by on October 30th, 2012 – 4 Comments

Hope: A desire of some good, accompanied with an expectation of obtaining it, or a belief that it is obtainable; an expectation of something which is thought to be desirable; confidence; pleasing expectancy.

Hope is a simple word that is a mantra for many. It is lived, breathed, and believed in with every fibre of being. I can’t begin to tell you how many things I own that bear the word hope. Everyone I know is on the lookout for things that say hope or have hope embodied in them for me. They are things I display in my home with pride. I was given a gift that had the word hope inscribed on it shortly after I was diagnosed with MS. My parents gave me a St. Christopher’s medal on my twenty-first birthday with the word “Hope” inscribed on the back. It is a necklace I wear every single day.

The word hope is a word that drives me forward everyday. I live every single day with hope. Hope for the future, hope for a future without MS, hope for so many things. To me it’s not just a word. It is a feeling, a way of life, something that doesn’t always come easily – believe me. It has only been in the last couple of years that I have become comfortable with who I am and how MS is included in that. Like many of us with MS I try not to let MS define me. MS is a part of me but I am not defined by my disease. I fight my hardest to show people this. (more…)

Moving On

Written by on October 26th, 2012 – 3 Comments

Hi everyone. My name is Mike, and hopefully everyone will enjoy my blog on this wonderful website.  As for my background, I am 29 years old, and I have been living with MS for almost 6 years–my six year anniversary is coming up in October.  My life has been filled with many ups and downs in these interesting six years. I have been fortunate to meet a lot of amazing people on this interesting journey.

MS has affected my life in so many ways; some positive and some negative.  I cannot change what has happened to me, but I have learned to embrace the changes and challenges. However, the one thing that I have never changed is the belief in myself.  When I first got sick, I was barely able to move; numbness flowed down the right side of my face all the way to my fingertips and to the bottom of my feet.  This was absolutely devastating because at the time I was a NCAA division 1 athlete.  My lifestyle, my sport, everything that I knew was all of the sudden taken away from me.  However, this wasn’t the first time I have had to overcome a hurdle in my life. I wanted to prove everyone wrong that I would come back and play the sport I loved at such a high level. Through hard work and determination (there was a lot of screaming, falling down, and swearing –though not necessarily in that order), I was able to come back to play a sport that I loved with some of my best friends. I took on the attitude that “ it was me vs the disease”, and I was not losing.

(more…)

SICK DRUMMER PART TWO

Written by on October 22nd, 2012 – 4 Comments

And then I woke up….

To be honest with you, no one needs to know the details of me getting back on my feet.  Feb 2nd 2012 is a day I’ll always remember. It’s really hard for me to go back to that place and I’m glad I’m at the stage where I’m writing about it. That’s not to say that I’m %100 cool with talking about it yet. I guess that will come with a bit more time. Maybe in a couple years I’ll be able to look in the mirror and not see the massive scar.  It’s not a part of me yet.  It’s still so new.

I know MS is really new to a lot of you here. It’s scary and awful and horrible and you would never wish it on your worst enemy.  A lot of you are going through harder times then others as well. I know many aren’t ready to talk about it yet and I totally understand. It’s okay to be angry and pissed off. You’re allowed. All I can give as advice is what I went through personally. It took me years to be able to talk to someone. It took me years to be totally cool with giving myself needles. But I am cool with it now. The heart surgery thing, not so much but I’m working on it. You’ll get there. With a healthy lifestyle, the right medication and a bit of time, those two little letters won’t bug you as much as they do now.

 

“You’re a sick drummer!”

Written by on October 16th, 2012 – 4 Comments

Ha. What an understatement. I don’t really use this lingo when I like something. As one would say, “That was a sick movie!”. I would say, “That was an awesome movie!” If I went out skateboarding all day, I wouldn’t say “What a sick day!”.  I would say “What an awesome day!”. I guess “Awesome” is my word.  Had the person who was complementing my drumming used the word “Awesome”, instead of “Sick”, I wouldn’t be writing this right now.

Hello, my name is Aaron. In 1998, my whole world was turned upside down with two little letters. MS. Those letters don’t bug me as much as they used to. They have brought me to the hospital hundreds of times. I have given myself hundreds of needles since all of this began. Blood tests, high doses of intravenous corticosteroids, Interferon-beta-1a (Rebif) injected three times a week, MRI, and Evoked Potentials. These are just some of the words and terms that are normal for me now.

After 14 years of putting up with MS, I am happy to say I’ve figured it out so far. I have been taking my meds religiously this entire time and I can’t remember the last time I had a relapse. In my mind the relapses are gone for good. They have to be.  I play drums all over the world with my friends and I haven’t let MS get in the way of anything.

Last summer was the summer of getting fit and finishing writing our next record.  That and spending as much time with my family was all I had time for. Everyday I would ride my bike from the west end of Toronto to the east. I would eat a proper meal, bring lots of water and play drums for hours. I would then hop back on my bike and make my way back to the west end.  Everything was great but it was time for a routine check up with the doctor.  A few years ago I had some chest pains after riding my bike. I had some tests done and was told I have a bi-cuspit aortic valve.  I was told “It looks fine right now but we should keep an eye on It.” and “This is very common, 1 and 3 people have this problem”. Cool. That was years ago and here I am waiting for the words “Everything looks the same, see you in six months” This time the words were “You’re heart is growing, it’s over working itself and you need to have open heart surgery as soon as possible.”

(more…)

So much more than a lab rat Part 2: A Researcher’s Perspective

Written by on October 9th, 2012 – No Comments

In my last post I wrote a bit about my motivations to be involved in research studies as a participant, in this post I’d like to shine a little light on the researcher perspective. I’m going into my final year of a research and inquiry intensive undergraduate degree and have had the opportunity to both contribute to and carry out my own research projects.

Although I haven’t worked on MS research specifically, I’ve done most of my work on topics related to the social determinants of health and ableism. In a nutshell this means I like to examine how social and physical aspects of our society like education, income, water access, and technology, can impact the health and well being of people with different abilities. I say different abilities where others may use the term disabilities, to highlight how social constructs create and propagate categories such as able and disabled and the respective positive or negative connotations attached to these categories(I’m going to write a blog post later on ableism, stay tuned!).

As student researcher I’m also motivated by adding to that collective jigsaw puzzle I mentioned in my last post but in a slightly different way. (more…)

Hopelessly Addicted….

Written by on October 2nd, 2012 – 2 Comments

Hi my name is Loribelle and I am hopelessly addicted to literature. In my head I can hear you say “Welcome Loribelle.” I know crusaders aren’t supposed to reveal their weaknesses, but I just couldn’t help myself. I fear this will be a lifelong addiction. There is no hope for me as I sit in a room surrounded by books. No, I am not in a library just my apartment which may at times look like a library. My addiction is sprawled out for all to see. Eeek, what is this crusader to do? If you haven’t figured out my complete satire of this situation, let me please let you in on the joke!

I have been reading my whole life. I could read before I even started Kindergarten. I don’t say this to be boastful; I am just letting you in on when my addiction to literature began. One of my sisters is 10 years older than I am. So when I was little, we would spend hours reading. She and my mother taught me, with great patience, how to read from an early age. My mom would work with me to make sure I pronounced each word correctly. I am so grateful they gave me that precious time to develop a life long love of reading. I would look forward to Wednesday’s because that was the night my mom would take my sister and me to the library in town. I was ridiculously proud of my library card! What 6 year old wouldn’t be right? I devoured my elementary school’s library with passion as well. I remember getting an achievement at the end of the year for checking out and reading the most books. The prize was a $25 gift card to a bookstore in my town; it was as good as gold to me! My reading took me on so many adventures! (more…)