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2/19/2020 2 Comments Putting an End to the Pity Party.
Last Thursday I saw my neurologist. While I have had a LOT of improvement with many symptoms, and some of the lesions have become less inflamed- they have not gone away and are unlikely to fully resolve. That was that. It was confirmed I am at my new "baseline", and now is the time to figure out my next step. My neurologist acknowledged my knack for persevering, and staying as positive as I am through all of this. Truly, the news that I may not recover more made me pretty devastated, because my personal expectations are high. I anticipated (hoped for) a lot more recovery by now and am grasping at anything that makes me feel slightly more "normal", or gives me any sense of accomplishment. What ARE lesions, anyway? "In multiple sclerosis (MS), the body mistakenly attacks the protective layer around the nerves in the brain and spinal cord (also known as myelin). These damaged areas are called plaques or lesions. ... However, lesions tend to happen more in people with relapsing MS." This is what my brain MRI looked like in July 2019:
What does my MRI look like, now?
The latest scan was done without IV contrast medium (Gadolinium) and does not show all the inflammation, but you can see many of the current active lesions. So, what does it all mean?Much of the damage has turned into scar tissue. This means that while I still may recover slightly over time, it is unlikely that symptoms of this episode will fully disappear. Something you may notice quite quickly is that I am very upfront and honest, possibly to a bit of a fault. My joke has always been that "I don't lie, my memory is too poor for that." I'm being entirely honest when I say that the past 6 months have really, really sucked. What have my days or weeks looked like lately? Rest. Rest. Appointment. Rest. Sprinkle on a little bit of sadness and a lot of self defeat, but also pepper in moments of reflection, triumph, and celebration. Hard lesson I have had to accept... The resting often does not feel conducive to productivity, but without taking these breaks we surely break down. Sometimes when things aren't going smoothly with life, health, love or business, we can be extra hard on ourselves and less likely to make time for self care. Not making time for the things that bring mental peace or physical comfort, is the fastest way to absolutely crush your productivity. It is very important to remember that taking breaks is not the same as failing, or falling off track. Self care is different for everyone. It doesn't have to be fancy face masks, and sparkling bath bombs from Lush. Self care can also be as simple as playing Super Mario bros. for half an hour (or 3 days straight, which I may have done while recovering from a flu). Do something to let your mind stop beating itself up, and just relax! Pace yourself.
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 | January 18, 2008 |
When I was given the news, I remember just folding into myself and being embraced by my mum. We were barely out of the hospital, just about to reach the parking lot, and this news hit us like a ton of bricks.
With teary eyes and while still very spacey from Ativan I was given for the MRI, I turned to my mum and said,"Go big or go home, right?" We laughed, and I knew I was going to be alright.
With teary eyes and while still very spacey from Ativan I was given for the MRI, I turned to my mum and said,"Go big or go home, right?" We laughed, and I knew I was going to be alright.
I always acknowledge this day, and reflect on things I love and am grateful for.
Sure, circumstances in my life may have not been totally ideal over the past 12 years... but I have done so many things in such a short time, and am proud of that!
Here are a few photos from along the way:
These are some of the first photos or moments I thought of as I typed this post, and this is only a glimpse at some of the things I've done, or overcome.
These are some of the first photos or moments I thought of as I typed this post, and this is only a glimpse at some of the things I've done, or overcome.
 With Phil Ferreira. I was 20 years old and gave a speech about my 2 short years of experience with MS. What an honor it was to speak at this MS fundraiser. |  This was December 25, 2010- The morning I woke up and was able to move my arm again after 2 months of paralysis! |  I was the cover of a London Drugs beauty catalogue in 2015. |  I survived the reversal of my breathing tube and avoided having to get a tracheotomy. |
 Worked on so many TV shows and movies, and wore many interesting costumes. |  Worked with amazing creatives and was published many times. |
 Was published in a yacht magazine for my boat work! |  Graduated nursing school with honors. |  Mum was there for me every step of the way. <3 |
 Spent lots of time in nature, and most often with film camera in hand. |  Adopted my little friend, Leroy. |  Went SO many adventures with my love, Nathan, of finetuned.ca! |
 I was a "stunt performer" on The Exorcist (S03E01) |  Helped at a very special little art shop and learned so much from my good friend and mentor, Stan. RIP |
Celebrating the fact that I can currently walk, see, talk, hear and taste. My sensation is still a little funny, but there are little improvements day by day. Feeling grateful, proud, determined and confident that I'll be back to thriving soon enough.
Thank you for all of your love and support along the way!
Thank you for all of your love and support along the way!
Fiona ♥
 | Great timing! Oh, bother. Perhaps you can recall from my blog about the massive relapse of July 2019- Symptoms began in my right ear. Looking back at my track record with MS, it has been normal for me to have a resurgence of symptoms and disease activity 4-5 months after big relapses, like aftershock of my own little earthquakes. That would be about now, and last night I ended up back in the Emergency Room due to more sensitivity in my ears, as well as bladder problems. Embarrassing, yes, but it is what it is, and unfortunately it's just a part of it. |
Guess what?!
The on-call neurologist happened to be one of the neurologists who followed my episode during the summer!
The on-call neurologist happened to be one of the neurologists who followed my episode during the summer!
Not only did she remember me, she even asked about my crested gecko, Leroy! This made me feel very trusting of her, as I know she truly listens to patients if she can remember my beloved pet that was briefly mentioned, 5 months ago.
As usual, I was poked and prodded. Did all sorts of neurological testing, had blood drawn, and an IV inserted. Due to fragile veins from vascular Ehlers-Danlos Syndrome, my first IV site blew out, and I had to have another IV cannula placed.
Assessments were thorough during this entire E.R. visit. It almost felt a little surreal when the neurology resident came to see me, and had already read my chart!
Assessments were thorough during this entire E.R. visit. It almost felt a little surreal when the neurology resident came to see me, and had already read my chart!
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So what did the hospital say?
After 6 hours in the hospital it was determined I may be having a "Pseudo Relapse" brought on by a very mild infection. My nervous system went totally haywire this past week, causing many symptoms to flare up.
This is a very clear reminder of how careful I truly have to be. Even getting a common cold or sinus infection is enough to send my immune system rampaging, and attacking my brain.
The neurologist was then stuck with deciding whether I jump on starting IV steroids to slow potential disease activity, or take antibiotics to deal with the infection, and risk getting worse.
This is a very clear reminder of how careful I truly have to be. Even getting a common cold or sinus infection is enough to send my immune system rampaging, and attacking my brain.
The neurologist was then stuck with deciding whether I jump on starting IV steroids to slow potential disease activity, or take antibiotics to deal with the infection, and risk getting worse.
Meds are always quite a conundrum. We had to consider how the steroids would suppress my immune system further, which could allow infection to flourish, intensifying symptoms even more. On the other hand we had to remember how I went from having initial hearing issues, to being admitted to the hospital and rapidly declining, very quickly. This was after not getting the steroids I needed at the time.
Tough call.
Tough call.
Vancouver General really is an excellent hospital, and I was very impressed with how quickly they were acting. I can not waste time with going to any other hospitals when dealing with neurological symptoms anymore.
The plan is a week of antibiotics, while we cross our fingers.
Hoping it's not the beginning of something more serious, but I feel like I'm in good hands if anything does go wrong.
Hoping it's not the beginning of something more serious, but I feel like I'm in good hands if anything does go wrong.
I'll be laying even more low over the holidays. Tomorrow I head to Victoria to spend time with family, and will post updates if there are any changes. On the brighter side of things, Christmas is always an extra special time for me. December 25th, 2010 I experienced a Christmas miracle!
After 2 months of my entire right arm being paralyzed, I woke up and was able to move it again. So even though I am dealing with a lot of challenges right now, I'm counting my blessings and feeling very grateful.
After 2 months of my entire right arm being paralyzed, I woke up and was able to move it again. So even though I am dealing with a lot of challenges right now, I'm counting my blessings and feeling very grateful.
Thank you to those who have reached out and wished me well, I appreciate you all so much and am sure I'll be okay no matter what happens.
Wishing you a Merry Christmas!
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Wishing you a Merry Christmas!
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