Happy Anniversary?
One year ago today, August 17, 2021, I was diagnosed with Multiple Sclerosis. Now, I knew that the diagnosis was coming before that date. I had read my lab results. I saw that I had CFS-specific oligoclonal bands. I knew what they meant. But it didn’t feel real until I actually heard the words coming out of my neurologist’s mouth: “You have Multiple Sclerosis”.
I’ve been dreading this day for the last couple of weeks. I wasn’t sure how I would feel, but I suspected that it might hit me like a ton of bricks and send me into another mental health tailspin. There have been many of those in this past year. As a coping mechanism, I scheduled myself a busy day to attempt to distract myself from the calendar. However, today I find myself trying to focus on the good. There have been many ups and downs over the last year. I’ve spent countless hours stressing over the fact that my vision hasn’t fully recovered. My left eye still views the world as though I’m looking through a patch of cloud or fog. I’ve spent even more hours worrying about the frequent intermittent numbness and tingling in my left arm and both feet, and whether it’s a new MS attack. Spoiler: my neurologist doesn’t think it is, as it’s usually set off by stress or environmental factors. I’ve had to learn how to manage my energy, because overdoing it now triggers severe fatigue. However, there’s been some great developments too. In the year since my diagnosis, I haven’t had any new MS attacks. Thank you, Kesimpta! Knock on wood; my grandmother left me with enough superstitious beliefs to be leery of even saying those words out loud. My March, 2022, MRI came back with no new lesions and one of my existing lesions appeared to have shrunk in size. My kick ass community managed to help me raise $6460 to fight this asshole of a disease when I participated in my first MS Walk in May.
On this day that I dreaded, I am trying to focus on the good things in my life:
I have a wonderful and supportive husband who not only puts up with me on my down days, but who does everything in his power to lift me up, even when I’m being an asshole.
I have a beautiful son who makes me laugh every single day and who has taught me more about dinosaurs in the past year than I ever could have imagined.
I have the most incredible network of family, friends, and colleagues, who have been understanding and supportive as I have struggled to cope with my new reality.
My support network has grown in the past year, and I have met new friends through this MS journey.
My dog, Piper, who often seems to intuitively know when I need a hug to make it through the day.
Novartis – yes, today I am grateful for a pharmaceutical giant! For all the flack that “Big Pharma” has taken over the last several years, I am eternally grateful to Novartis for developing a DMT that I tolerate well and that has pumped the brakes on my disease activity. I am also grateful that Novartis footed the bill to get me started on Kesimpta while waiting for insurance approvals. This allowed me to start treatment in September 2021, instead of January 2022.
Research shows that slowing or stopping disease activity in the early years after diagnosis is one of the key factors in ensuring a more favourable long-term prognosis. I am pleased to have reached my first anniversary of living with MS without facing another attack, and I hope that I can say the same when this anniversary rolls around again next year.
While August 17th is a date that I wish had no significance to me, it will forever stand out as a date when my life changed. So happy anniversary, MS – one year down, forever to go.
