Archive for September, 2012

What a way to wrap up my August!!!

Written by on September 25th, 2012 – 1 Comment

 WOW!! WOW!! WOW!! If I have ever felt “useful” and that I was making a difference with my MS, and hopefully others – I experienced it in August!

In case the month of August wasn’t fantastic enough with my new house, and becoming a wife – I had the privilege of being the A & W National MS Inspirational Champion.  Words can’t describe how amazing the experience was.  I had a chance to see amazing people I have met throughout my 8 years with MS, and I was fortunate to meet more amazing people!

Travelling around Canada and speaking in different locations really taught me something.

No matter how old or young we are, what sex or race we are, what we believe in – we all want the same thing and are fighting for the same thing … HOPE … our hope gives us a future and we all share that common goal.  No matter how different our stories are, we all understand each other in one way or another.

The MS staff, the crowd, the support in each city was amazing – I remember the last speech I gave in Vancouver, I was standing there in shock and awe with all the smiling and supportive faces I was getting back – and no one even knew me. 

This illness is constantly challenging me in new ways, and constantly rewarding me in others – this was one of my greatest accomplishments in life, and I can’t thank the person enough who nominated me. 

I hope that by traveling around Canada and sharing my story, my motivation, and my dreams for MS – I managed to help even just ONE person in each crowd.

So much more than a Lab Rat Part 1: Participant Perspectives

Written by on September 11th, 2012 – No Comments

Choosing to be a part of someone’s research study is a big decision. When I was 15/16 and was first diagnosed with MS, I enthusiastically jumped on board for every study that I was asked to be a part of. I didn’t even really take a second to think about it at the time, I just signed up right away– usually in the same appointment. At the time I just wanted them to find out more about this strange disease; I knew that not as much was known about its manifestation in children and I hated that.

For me, signing up to give my health information away seemed only natural if it was going to help doctors and scientists learn more about MS, because then I would ultimately know more about it too. I’m still involved in a few of the studies I first signed up for 4 years ago and have had time to reflect on the whole thing. For me, being involved has had both ups and downs. A benefit I’ve found of being a part of research is that I’ve gotten to document and keep track of my health more frequently, I think, than if I had opted out. Another benefit is that I’ve been keen on following research progress and staying up to date with what’s going on in terms of advancements and progress. I’ve been able to develop a relationship with my specialists, and by that I mean I feel comfortable talking to them about any-and-all of my concerns.  The strongest pull for me to stay involved though has been the fact that all my participation means for me is a few extra appointments and tests each year. (more…)

MS Camp 2012!

Written by on September 7th, 2012 – 1 Comment

Tree hugging, lock diving, dead fish and a funny egg pod that we’re still not sure what it is.

All of these are just a few of the great times we had at camp this year, going zip lining for the first time in years was differently fun, moving past the scrapes, bruises and splinters that were found in a few select legs. But for the most part I think that everyone that went had a great time. Camp this year was different in a way, there were so many kids if it wasn’t for Facebook, I wouldn’t remember all of their names.

Talking with the peer support leaders was a lot of fun, and hearing some of the new stories – sad but funny at times too, we’ve all done those embarrassing things, or had them happen to us without it meaning to, and as some of us have found out, you can’t stay on the little things in life, you gotta learn to laugh it off and smile keeping it in your memories to be told to the next group of new kids. (more…)

Would You Change It?

Written by on September 4th, 2012 – No Comments

I have a question for each of you. A question I am sure we have all been asked at some point or another. If you could change anything in your life, would you change the fact that you were diagnosed with MS? Logically most people would say “yes” without a shadow of a doubt, without a moment’s hesitation. We all know the cruelty this disease can inflict. We know that life with MS is a roller coaster. Knowing all of this, would you change it?

My life has without a doubt been changed and affected by MS. I learned that I had this disease at the tender age of 20; an age when most people are in college deciding what career field they want to be in. It’s not typically an age where one has to decide what treatment path will be best suited for their life and disease. I’ll admit that I was envious of my peers at that age. My primary worries weren’t what party or movie I was going to see that weekend. My thoughts were consumed with treatment options, how to finance said treatment options (they aren’t cheap), and tests I’d have to undergo. If you’ve been following my blogs you know that I placed my college aspirations on hold for several years and jumped head first into the MS world. (more…)