Congratulations again to the someonelikeme.ca and commemoi.ca bloggers who won the WEGO Health Activist Awards for best team performance in March 2015. We received a prize pack with an iPod and would like to award it to one of our very deserving bloggers. For the next 5 months, for every blog posted on someonelikeme.ca or commemoi.ca, the blogger will get their name entered into a draw to win the prize. Stay tuned in December to find out who the lucky winner is!
Growing up I was always happy, smiling and laughing. When I got diagnosed at 15 though, things changed. I didn’t realize it at the time, but I became bitter. It wasn’t until twelve weeks ago, in fact, that I realized that I was angry. Throughout high school I kept it hidden behind SAT prep books and the quiet girl façade, but under the smile and kind ‘hello’ I was mad. I hid it so well that I didn’t even know it was there. All I remember feeling was shock
It took a life-shattering event to force me to deal with my anger. Twelve weeks ago my best friend in the whole wide world passed away. She was my first friend, my best friend, and my grandma. Her passing destroyed me. It wasn’t uncommon for me to end up sitting in the shower sobbing letting the water wash away my tears. I spent many nights trying to find clarity at the bottom of a bottle. I could feel the anger boil up inside me. Little things that I would normally shrug off made me very upset. My patience became non-existent. (more…)
By: Andrea, guest blogger
the quality or feeling of being grateful or thankful:
Gift. Normally we think of happiness and gratitude when we think of receiving a gift. What I have learned, is that sometimes those reactions can be delayed. But when you learn to accept a gift with an open mind, gratitude eventually ensues, and your heart will begin to smile.
I am a newcomer in the world of MS. In fact, I basically still have a visitor’s pass, as I wait here in Limboland for the gates of MS to open. I have one clinical symptom, optic neuritis, and a stable brain MRI that shows two lesions. My major symptoms, other than optic neuritis, are MS fatigue, and numbness in my legs and feet. I experienced my first symptom of optic neuritis in July of 2013. As terrifying as it was, I remember feeling relieved. I had been seeing different doctors for years, feeling frustrated as I looked for answers to explain why I was feeling the way I was, and then finally, they were beginning to pay attention now that I had optic neuritis. Fast-forward two years later, and here I am still waiting, but now with patience and acceptance.
I have been lucky to have an amazing support system that surrounds me. One woman, in particular, changed my path early on in this journey. She asked me, “What is the gift in MS for you?” At first, my reaction was ‘What is she thinking…this is such an ignorant question’. But as she patiently waited for my response, my thinking quickly changed, and I realized, the gift in all of this, is that the possibility of MS has given me reason to put myself first. This was something that I had never done in the past. And ultimately, it has given me incredible strength.
From that day forward, I always try my best to remember what MS has given me: strength, focus, awareness of myself, and a passion to live life as it is now. Of course, there have been many days when I have felt anger and resentful to what I have been handed, but with the ability to change my thinking and remember the positives that MS is giving me, that anger and resentment quickly fades away. And in return, I grow stronger.
By the time you read this I will have completed my first 5Km run in years. Actually the picture I included was from my last 5Km and that was in 2011. I trained briefly about a year later but of course had to stop due to relapses.
So my relationship with running has been on again off again since my teenage years, of course relating to relapses. As a young teenager I did quite a bit of long distance running and then was told I would have to stop due to a relapse. Of course I don’t listen very well, so I waited until I recovered from the relapse, and started running again. I’ve done this more times then I can count and each time it gets a bit harder.
This time I decided to run in a fun run, in support of our local Children’s Hospital. I have a friend with preemies in the hospital so this seems like a great way to support her and get back to something I really love! (more…)
Hope everyone has been having a great summer. I had some exciting news that I wanted to share with everyone and provide some motivation to those just starting out their fundraising efforts :).
EVERY PENNY REALLY DOES HELP!!!
I was diagnosed 11 years ago, I was unable to participate in the MS walk my first year due to the stress and side effects I was going through with MS. It was also only a few weeks away and I was no where near ready for that.
The following year, so 10 years ago, we participated in the MS walk here in Saskatoon. I had secretly (and silently) set a team goal for myself … that in 10 years I wanted to raise $100,000.
Well … you guessed it … this year we raised just over $13,000 … meaning our team hit our goal … I am thrilled beyond thrilled … $104,000 in 10 years … my mind is blown!!!
YOU CAN DO IT .. you can help … every penny counts …
I find myself in a very different place in life these days. I am feeling less like I am just trying to get through just the next second, minute, hour or day. I have long drifted past those first terrifying few years post MS diagnosis. I finally have a solid treatment plan in place and I find I can look at more in my life than simply my next medical crisis. I definitely still have bad days, but I know they won’t last forever. I never thought I would get to that point. I never thought I would get to a point where the future didn’t create an anxious feeling in the pit of my stomach. It’s a liberating feeling. (more…)
By: Melissa G. from The Travelling MSer
Today is World MS Day. This year, we are asked to share what makes us “stronger than MS”. For me, what makes me feel strong are the people that support me through it everyday. First and foremost, my family, who I would never have gotten through the past few years without. Supporting me through every hospital visit, every doctors appointment, and every bad day. My friends, the ones that stuck around and continued to remember that I am still the person I always was, even though I may do things a bit differently now. Also the new friends that I’ve met because of my MS, who I am so very thankful for. My boyfriend, who makes me feel like it’s okay when I’m not up to doing something we had planned on, and understands no matter what, reminding me that it’s not my fault. These people all make it so I feel like I can get through it even when I’m at my worst, and remind me that I have to fight, even when I feel like I can’t.
For them, I try every day to be #StrongerThanMS
To read more personal stories from Melissa check out her blog at: www.thetravellingmser.wordpress.com
Yesterday was the Vancouver ScotiaBank MS Walk. This year. the walk was held at a new location, at The Plaza of Nations right along False Creek in beautiful downtown Vancouver. This meant that the route ran right along the seawall. It was a gorgeous walk for everyone who participated.
The turn out was fantastic-about 500 people showed up and there was so much to see-teams in costumes…
Teams with signs…
Teams whose participants were doing the course their own way…
To mark World MS Day, join us on Wednesday, May 27, 2015 from 7:30-8:30pm EST for our annual MS Research Town Hall. This by-phone and live-streamed event will feature prominent MS researchers, including Dr. Mark Freedman, Dr. Helen Genova and Dr. Ruth Ann Marrie, in conversation with the CBC Radio’s Bob McDonald (Quirks and Quarks).
The annual MS Research Town Hall offers listeners across Canada insights and information regarding the latest research being done in the area of multiple sclerosis and how it impacts the future of disease knowledge. Learn more about stem cells and MS and other ground breaking research that brings new hope to people with MS.
Watch our social media accounts to cast your ‘wild card topic’ vote. For more information and to pre-register for the event, visit mssociety.ca/msresearchtownhall.
March was an insanely busy month. Just before I left for LA for NMO Patient Day, my husband and I faced an unexpected move. For added fun, I also had an accident that resulted in a fractured rib. It was not ideal to have to be purging and packing up an entire house in order to downsize and move, but somehow I did it. I am eternally grateful to my son and my husband’s co-workers (big burley construction guys) who came and did all the heavy lifting. We are now settled in at our new home, a condo on a beautiful greenbelt and it even has a pool. We LOVE our new home.
Patient Day in LA was a wonderful experience. There were NMO patients there from all over the world as well as NMO researchers and clinicians. I was invited to share some of the ways in which I advocate for NMO awareness through the UBC Interprofessional Health Mentors Program, as a Community Representative for the MS Society of Canada and as a blogger from Someone Like Me. While I wasn’t at my best, (my fractured rib was causing me a considerable amount of pain) it was really nice to have people come up to me afterwards and offer such positive feedback about the work I am doing. I really appreciated the support. I always feel so blessed to be able to serve and do the work I am most passionate about.
It’s amazing to think that the Guthy-Jackson Charitable Foundation was only founded six and a half years ago. At that time, there were NO clinical trials for NMO. There are now THREE being set in motion which is absolutely incredible! At Patient Day, we had the opportunity to hear from representatives from each of the three drug companies that are running the clinical trials. They did a great job explaining in layman’s terms how each of their trials worked. It was good to hear the facts and to be able to ask questions. Because NMO is so rare, NMO patients are being encouraged to participate in the clinical trials if we meet the eligibility criteria. This is our opportunity to actively help find the cure for NMO. More information about these studies can be found here at NMOtion: http://nmotion.guthyjacksonfoundation.org/
Awhile back I wrote a short article about blogging about MS and NMO for MS Pathways, which is a UK MS organization publication. It was recently published and was a great opportunity to raise awareness for NMO, Someonelikeme.ca and NMODiaries.com . I’ve included a screen shot (above) of the e-publication. (I’m the one circled in red.) If you are interested in a hard copy, they can be ordered here: www.ms-uk.org
I have lots going on this month, which I’ll talk about in my next post. Blogging at the speed of life!