I’ve been feeling all the feels since my last annual MS Clinic appointment and needed to process them. I wasn’t sure what I wanted to share publicly with the blogging world but this blog is my outlet. This blog is my journal and how I express myself. My writing is my creative output and it fills me up.
Cue Excited Baby Photo…
Ok, so first off I was scared to actually use the word remission. I only ever hear it used around cancer patients. So I, of course, used my trusty Google engine to look up the definition. Was it applicable to me?
A temporary recovery? Hmmm…As I’m well aware, MS just doesn’t “go away”. As many resources will tell you there is no cure for the
As I’m well aware, MS just doesn’t “go away”. As many resources will tell you there is no cure for the autoimmune disease. However, if my annual MRIs do not show the progression of the disease, I have zero disability presenting itself and I have minimal symptoms (that are usually only brought on by workouts done in the heat) I am proudly claiming and exclaiming that my sidekick is in remission. Hell yes, it’s a diminution of the seriousness of the disease and I’m recovered enough that I’m ready to not let it define me.
Which I said I didn’t want to do but inadvertently did anyways by calling myself an MS Warrior in every single social media bio.
Ok so how do I know that I’m in remission? My MS is tracked on an annual basis by an MRI scan. I’ve only “officially” had the disease since 2014 but during the first year, it was being tracked every 6 months and then it moved to annually. This past March, I presented myself at the Ottawa Hospital as scheduled for the annual MRI. Stripped down to my skivvies, donned the ever flattering hospital gown, removed all earrings, hippie bracelets and necklaces (usually a mala) and jumped up on the MRI bed like a seasoned pro. When given instructions, about how not to move, I just nodded and said “Yup I’m aware” as I’ve done it many a time.
I had a pretty good feeling that there would be one or two new lesions in my brain due to my inability to process stress very well this year and they have consistently shown up when I’m not fully taking care of myself and how I manage stress in my life. However, the brain lesions are asymptomatic for me. I’ve asked many neurologists based on their location what could they affect in the future and I’ve been told they don’t know. The one on my spine which caused the initial symptoms at the time of diagnosis and cause symptoms when I overheat (based on where the myelin sheath was eaten away) actually “disappeared” a few years ago. Which means I’m doing well in reducing inflammation in my body so that the lesion no longer shows up on an MRI. A few months later, June rolls around, my MS clinic appointment shows up on my calendar, I ask Mike to come with me and we head into the clinic together.
My Ottawa neurologist: “You have 2 new lesions but one from last year’s MRI has disappeared”
I look at Mike, Mike looks at me. After the appointment we giggled, 2 minus 1 = 1 so I only have 1 new lesion 😉 MS math 🙂
After a neurological examination, lots of questions on my health care routine, how I’m feeling and any new symptoms (which I don’t have) so then my doctor says:
“So I don’t think we need to monitor you anymore. You seem very stable and based on the MRIs do you think you’ll change the way you’re taking care of yourself?”
I paused for less than a second.
“No. My healthcare routine is really good and I’m continually optimizing it with my alternative health care team.”
“Alright, then I suggest we don’t monitor you anymore with MRIs or appointments at the clinic. If anything changes, of course, please get in contact with us but it looks and sounds like you’re doing very well.”
Mike and I left and I felt torn. That’s it? That’s all. I’m free to go into the world without a conventional medicine practitioner looking over me. But then when I think about it. The only course of treatment that said neurologist has for me is pharmaceuticals which I’ve refused based on low efficacy and multiple negative side effects. I wanted to prove that I could take care of myself naturally and technically I just did. I guess, what did I expect? A pat on the back. A “You did good kid. It looks like you figured out how to live with MS and thrive in the process. Would you like to share your secrets with the rest of my patients so I can have the same outcome?”
I guess that was a little too much wishful thinking.
But if they aren’t worried about me, why am I so worried about not getting monitoring. I don’t need it. I’ve figured out the building blocks to my health. I’m a forever student of optimizing my health. I consistently ensure I’m compliant with my health care and voila. I will live a life of remission from MS. It’s my sidekick still just a way more silent one that I don’t need to shout from the rooftops that I’m battling. Sorry MS. I won this battle. You can hang out as my reminder that I can always take better care of myself. But I don’t need to Warrior against you.
So I’ve removed MS Warrior from my bios. You’ll still be able to read about my journey living with MS. I just won’t be broadcast that I live with this disease. Instead, I’m just gonna go out and live as Robyn instead.