I’d like to start my blog by saying this is just my story and I’m not advocating for anyone to do anything other than listen to yourself in making choices regarding your life and MS. I was diagnosed with MS in 2010 and have been on medications since a few months after diagnosis. I selected an injectable medication at the time based on lowest side effects, ease of use for travel with work to remote locations (expiration outside the fridge) and so forth. This medication was injected into deep fat layers under my skin. I wanted to live my life the best way possible with as minimal interference. Adjusting to the drugs was difficult – the huge itchy welts that didn’t go away etc but I was committed and after about 3-4 months of this I got through it and things became better. It took much out of me to deal with this and I won’t down play the difficulty. I felt, at the time, I was set for a long while despite the nurses forewarning “some people have injection site issues and cannot tolerate being on injectables in the long term and some people have no issues!” I never missed taking my medications and I depended on this as one of several things to manage my MS. After 2 years of being on my medication, I observed the dreaded injection site reactions – the lipoatrophy (death of fat layers) first in my arms and then finally in other injection locations despite vigilant rotation of injection site locations. I realized my time on these medications was slowly coming to a halt and this issue essentially eliminated a whole suite of other drug options (because they required injection into the same type of tissue).
Last year I set a timeline in which I would chart my next steps in moving forward. I gave myself a year to figure things out. I had to make difficult decisions and I wanted to be informed about what was next for me – at first it was mass learning about which drugs were available. I learned much about the oral medications coming on the market and of their side effects. The reality is all the drugs have side effects and all were harsher than the medications I was on. I spent several months feeling like my only option was to change drugs and I was set that this was my path forward. I was scared to make change –any change that might make me take a turn for the worst. To me no drugs was fear and thus not an option. (more…)
By: Chris Mann, guest blogger
Check out the videos below to see day 3 and 5 of my new MS treatment:
Back in the fall we were asking that everyone vote for someonelikeme.ca for the WEGO Health Activist awards. I am delighted to announce that someonelikeme.ca won for the category of Best Team Performance!
As described by WEGO Health: “This award is for teams who work better together. Whether it be a group that runs an online chat, a non-profit organization, or a caregiver and patient duo – this award is for a team that takes their activism to new heights because of the assistance from one another”. Visit the link to see the video announcing the winner: http://hubs.ly/y0CxY_0
Congratulations to our amazing team of bloggers who share their personal stories and experiences to make the site what it is, and provide support for those around them.
We would like to thank everyone for sharing and voting to help someonelikeme.ca become a finalist. Thank you for your ongoing support!
By: Chris Mann, guest blogger
Check out the videos below to see day 1 and day 2 of my new MS treatment:
By: Chris Mann, guest blogger
My name is Chris Mann. I’m 35 and live in Victoria, BC. I was diagnosed with RRMS in April of 2013 and had a very aggressive start to life with MS! Hence I am starting treatment with Lemtrada March 9th and have decided to video blog each day of my treatment. I hope others can learn from my experience as I’ve learned so much from others with MS. Check out my story below and stay tuned for more updates to come:
By: Andrea Mears, Guest Blogger
With the Mandarin MS Walk season quickly approaching, I wanted to share a little bit about my walk experience last year! My name is Andrea and I’m 24 years old. After being diagnosed with MS in December of 2013, I decided to create a team for the Mandarin MS Walk so my friends and family could come together to support the MS Society. Being diagnosed with MS has changed the way I value things in life, specifically my health and wellness. There are difficulties I face on a daily basis that may not be visible to others. Despite the negative impacts MS has on my life, it has taught me about personal strength and resilience the way no other experience has before.
Hello again SLM Community! I am so sorry to have seemingly been absent so long. I promise you guys that you weren’t far from my thoughts. Time seems to have gotten way from me; nonetheless, I have returned! In doing so, I am finally sharing an article I had been somewhat hesitant to let go of as it is about someone who was so very, very dear to me.
As most of you are well aware, I am a woman with an amazing support network. I have a large group of family and friends who have helped me throughout my life and my MS journey. I am blessed to come from a large family with many grandparents, aunt and uncles and other relatives. I was fortunate to have a team of people that always had my back and I could go to for anything. I’ve been lucky to share close relationships with my grandparents; something I am well aware of that not everyone gets. It is through that blessing that I have experienced some of the ultimate highs in this life and some heart shattering lows. I am going to split this post into two (please click here for part 2) as this story encompasses more words than just one post can convey. So please bear with the split and know this story comes from some treasured parts of my life!
Please note: This post is part 2, to read part 1 please click here
I had been through the death of a loved one before. It was certainly not my first grandparent related death; it was just different. I felt the pain more acutely than before and there was a gaping void left in my heart. That sounds so cliché but there must be a reason there is such a cliché, right? I was so very numb and broken during that first day without him. I still had my MS infusion scheduled and I knew I couldn’t put that off because my grandfather wouldn’t have wanted it. So we drove the two hours to the private clinic. I sat the required two hours for treatment with sunglasses on so the tears I shed were private and I had some protection from the reality that I was facing. A reality that meant one of my closest allies in this world was no long here. The truth of that day was far too much for me to bear. After completing treatment and returning to my home, my body decided things were too much for it and it shut down. I lost consciousness, my breathing slowed to an almost imperceptible level, and my heart rate dropped. I still feel bad about my parents having to deal with that on top of everything else.
Dear someonelikeme community,
I was lucky enough to volunteer for a commercial that is connected to a very important campaign. After research and some reflection I decided to write a blurb that I hope you will share with your social media support networks. I am really inspired by the work the MS Society is doing and I feel like as young MSers it is important to help spread awareness. I hope you feel the same. Please share this post if you have the time. I thank you in advance.
If you saw a movie over the long weekend or happen to still have cable you may have seen this commercial…
Now let me tell you why this ad means more to me than turning 25 this weekend. I have now lived for 25 short years and in that time I have experienced 8 long years of life with MS and NEVER BEFORE have I seen a commercial for MS – at least not like this.
In 2009, the National MS Society described the history of MS as “a detective story spanning more than a century” and can trace what we know as MS in autopsies that date as far back as 1838. For us Canucks in 2015 we know provinces have reported various incidence rates, which are the number of new cases of MS per capita in a given year. These rates rival some of the highest incidence rates seen around the world, and researchers are trying to determine if the high number of diagnoses are due to a factor that is unique to Canada or if it’s a reflection of changes to our diagnostic technology. The two things to take away from this are:
a) MS has been around and has been a mystery for awhile
b) For as much as they know about the disease there is still so much more they need to discover (more…)
In late January, I flew out to Toronto to meet with the Personnel Awards committee at the MS Society of Canada office. The Personnel Awards committee is responsible for reviewing research applications for studentships – Master’s, Doctoral and Postdoctoral fellowship applications that are involved in both biomedical research and clinical and population health research. This committee was comprised of 11 researchers and clinicians, (one of whom was the chair) two MS Society grants staff, an MS Society intern, the Vice President of Research, (who herself has a PhD) and four community Reps, which included me. In all, the board room was filled to capacity with 19 people working as a team.
All of us spent 6 weeks prior to the meeting working hard on our reviews. I personally reviewed 24 grant applications. I spent countless hours learning new words (Thank goodness for Google!) and trying very hard to understand a few applications that were exceptionally challenging. There were times where I felt like I was stretching far beyond my comfort zone, but I would temper that with the knowledge that I was doing this work to the absolute best of my ability.
The review process was eye opening for me. I came away with a deeper understanding of just how complex a process it really is.
The Canadian MS Society’s mission statement reads:
“To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.”
And these are the values* I saw in action during the review process: (more…)