Why I’m walking to end MS
Canada has the highest rate of MS in the world. Every day three more Canadians are diagnosed with multiple sclerosis, an unpredictable illness that affects vision, balance, memory and mobility. We don’t know what causes MS and there is no cure.
On June 9 I will be taking part in the MS Walk in St. Albert. Early in 2017. after a few months of ups and downs with my health I was diagnosed with MS. At first I was really sad, thinking of all the potential missed opportunities I may have as the disease progresses. However, I have come to realize that I have the ability to choose how MS affects me, and I am choosing to make a difference. This is why I am participating in the MS Walk, and this is why I am fundraising. I will walk, surrounded by my friends and family, to work towards a cure for MS. Please help me in doing this.
Your support means Canadian families, like us, who are affected by this disease do not have to face MS alone. This year, I am honoured to be one of the MS Walk Ambassadors. Please feel free to get in touch with me with any questions!
When you donate to my fundraising efforts for the MS Walk, your funds are invested into research to find the cause and cure for the disease, while providing services to Canadians with multiple sclerosis and their families.
Thank you in advance for joining the fight to end MS.
My Experience with MS
I am extremely lucky for a few reasons. Firstly, we caught my MS early. I actually had to wait a bit to be diagnosed because I had only had one flare up, or "relapse" as it's called in the MS world. Basically, when I saw my neurologist, I had the "S", but not the "M" yet. Instead of waiting for another relapse, my neurologist sent me for a follow up MRI and compared it to the first. There was a new active area, so that was enough to give me that "M" for my official diagnosis.
I immediately went on a drug called Copaxone, which I self inject three times a week. In addition, everyday I take 5000 IU of Vitamin D - trust me, that is a LOT of Vitamin D. So far my medication has been doing it's job. At my MRI in January of 2020 I had no new lessions since my initial onset. This was such good news that I cried at my desk when the neurologist called to debreif my results. That makes it worth stabbing myself every two days.
The second reason why I consider myself lucky is that my MS is relatively mild. Day to day I don't experience any major glaring symptoms. I certainly notice it everyday, but others probably don't. For me the biggest thing is chronic exhaustion, which is very common among MS patients. In order to feel appropriately rested I need between 10-12 hours of sleep a day. As you can imagine, this almost never happens. Working full-time, taking care of two kids, spending time with my husband, and trying to have somewhat of a life (even if that just means catching a rerun of The Office in my pajamas) makes those many many hours of sleep all but impossible. For a very social person like myself, this is often very frustrating as I can only plan a limited amount of activities, and sometimes I have to cancel plans which hurts me to my core. I often feel like people aren't going to understand and will be upset with me for bailing. If you are someone who has felt that before, I can promise you I do not relish cancelling. In fact, I hate it and will avoid it at all costs. Please know that if I cancel, it is because I have to. From this I have learned a valuable life skill though - the art of napping. Never having been much for napping, now I am basically an expert. If there is a spare 15 minute window, you can bet your bottom dollar that I am sawing logs. Other than this borderline narcolepsy, my symptoms probably pass undetected by most. I have a harder time with word recall now - common words, names, places, etc. I also fumble my words a bit more than I used to and am not quite as eloquent in my speech at times. Other times I just feel kind of fuzzy. While this may not sound terrible, for me this was the hardest pill to swallow. To quote Albus Dumbledore, "Words are, in my not so humble opinion, our most inexhaustible source of magic." Words have always been my resource, comfort, safety, and strength. To slowly lose them felt like a complete betrayal within my own body. I am working on being kinder and more patient with myself and understanding that others will try to do the same.
I have had to do a lot of work on self awareness and knowing how to monitor and take care of how I am doing. This is where Reason-For-Being-Lucky Number 3 comes in. I have this crazy amazing support system. If you are reading this, you are probably within that system. From diagnosis to now I have had more support than anyone could dream. As soon as I was diagnosed our family started researching. They ordered books, read articles on line, watched Youtube videos, and most importantly they asked me questions. They asked how I was doing, what I needed, offered to take the kids when I had no energy, came with me to neurology appointments if Cody couldn't, forwarded new stories on MS developments, and so much more. They say it takes a village to raise a child, but my village didn't quit after childhood and amazingly this village just keeps getting bigger. At the core of this village is my unwavering husband, Cody. He is the one who reminds me to take meds, warms my medication up for me, reminds me to slow down, reassures me everyday, accompanies me to appointments, stands by my side regardless, and literally picks me off the floor when I can't get up anymore. Without him this would be much much scarier. Not everyone can be front line supporters like Cody, but that doesn't mean that I appreciate those people any less. Every ounce of support is so meaningful - checking in, visits, texts, phone calls, hugs, information sharing, walking with me at the MS walk, donating, sharing my story, cheering us on - it all counts and makes my heart burst with love for this wacky little village that just won't quit.