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:
 An emergency neurologist pointing to one of the major problem areas, just above the brain stem. 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.
 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. | I always acknowledge this day, and reflect on things I love and am grateful for. Family (#1, always.) Love Friends Mentors Adventure Growth Art Community Curiosity Adaptation |
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.
 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. |
 So. Many. TV Shows and Movies. So my cool costumes. |  So many adventures with Nathan! |
 Worked with some amazing creatives and was published many times. |  Mum was there for me every step of the way. <3 |
I was a "stunt performer" on The Exorcist (S03E01)
 Graduated nursing school with honors. |  Did makeup for old friends who have supported my makeup work since the beginning! |
 Spent lots of time in nature, and most often with my film camera.  Published in a yacht magazine for my boat work! |  Adopted my best friend, Leroy.  Family had some major ups and downs with health, but are happy and healthy now! |
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!
 | 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 do 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 actually the beginning of something more serious, but I feel like I'm in good hands if anything does go wrong.
Hoping it's not actually 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!
♥
Wishing you a Merry Christmas!
♥
 | PS. This is always one of my biggest highlights of the holidays. Christmas lunch with ALL THE CHEESE!!!! I avoid having too much dairy usually, as it increases inflammation, but it's no holds barred this one day of the year. No gluten as usual, though. We don't want any more hospital trips this year! |
 | That may sound kind of dramatic... but this entire situation was surreal. |
The photo on the left was captured Sunday July 14th, 2019 by Vancouver Photographer, Phil O'Donoghue. This was just hours after the hospital had turned me away, and just 12 days before the photo on the right was taken.
Saturday July 13th, the day before this photo shoot, I was turned away from the E.R., as well.
"Mild inner ear infection with lacrimal duct dysfunction" is what they suggested that day, after I reported sudden right-sided hearing loss. On Sunday I knew something was very wrong when all of my symptoms drastically shifted. The hearing loss reduced, but the world would spin at any movement of my head or eyes, and I could not feel the left side of my face or entire back of my head.
I know my body well, and reinforced with triage again Sunday morning, "I have Multiple Sclerosis and a vascular sub-type of Ehlers-Danlos Syndrome. I took my last dose of the medication Gilenya on May 31, 2019 and am at high risk of MS relapse. It is important we rule out neurological issues."
Alas, I was again sent on my way. I figured if the hospital thought it wasn't enough to keep me, then it wasn't enough to keep me from doing my work that day. The photographer I was booked to work with is one of my best friends, so I knew he would be understanding and helpful if anything got worse.
Saturday July 13th, the day before this photo shoot, I was turned away from the E.R., as well.
"Mild inner ear infection with lacrimal duct dysfunction" is what they suggested that day, after I reported sudden right-sided hearing loss. On Sunday I knew something was very wrong when all of my symptoms drastically shifted. The hearing loss reduced, but the world would spin at any movement of my head or eyes, and I could not feel the left side of my face or entire back of my head.
I know my body well, and reinforced with triage again Sunday morning, "I have Multiple Sclerosis and a vascular sub-type of Ehlers-Danlos Syndrome. I took my last dose of the medication Gilenya on May 31, 2019 and am at high risk of MS relapse. It is important we rule out neurological issues."
Alas, I was again sent on my way. I figured if the hospital thought it wasn't enough to keep me, then it wasn't enough to keep me from doing my work that day. The photographer I was booked to work with is one of my best friends, so I knew he would be understanding and helpful if anything got worse.
The photo shoot went surprisingly well despite the lack of feeling in my face, and I held it together alright for the day. Then 4pm came and while I was washing my face up after the shoot, the vertigo hit much harder. As I lifted my head from the sink, the entire world started spinning and I began throwing up.
The next day I still could not feel my face or head, and still felt sick from vertigo. Me being me (stubbornly devoted when it comes to jobs I've agreed to do)- dragged myself all the way out to the middle-of-nowhere, to work on a TV set. At the time I was committed to a very interesting background acting role, and was determined to finish my last few days on the show. After only about 4 hours, another performer who knew about my MS came to me and said, "Fiona. Go home. You can barely stand." (Thank you, Bon.)
Time was ticking, and I started mentally preparing for the idea that the breathing tube might not be able to be reversed. At this point it was up in the air if I was going home one day with an irreversible tracheostomy.
Each ward I was moved to (5 total) came with a unique set of challenges.
Maybe I'll share more on that another day.
- Fast-forward 4 days, and I was started on an IV drip, receiving a huge dose of steroids (My first round, of 5, during this episode).
- 3 days later I received my first dose of a chemo-like drug for MS, Ocrevus.
- The next day I was admitted to VGH, catheterized, and the ward-shuffling began. Then came the feeding tube.
- 2 more days pass, and I was intubated (breathing tube inserted) and put on life support in order to have an MRI done.
- The next day I turned 30, while still on life support, and barely surviving.
Time was ticking, and I started mentally preparing for the idea that the breathing tube might not be able to be reversed. At this point it was up in the air if I was going home one day with an irreversible tracheostomy.
Each ward I was moved to (5 total) came with a unique set of challenges.
Maybe I'll share more on that another day.
| Why on earth would I be intubated in order to have an MRI, in the first place? Unfortunately the constant sickness would not stop. I could not move out of this position without throwing up repeatedly. No other tilting of my head. No sitting fully upright. No laying down. They needed me to be able to lay down flat for 45 mins in an MRI machine, to rule out the chance that I was having a stroke. The vertigo was too intense while coherent, so they had to put me under and intubate me, as I could not breath on my own during this procedure. Fortunately the stroke was ruled out!  | 
You can imagine how much pain I was in after muscles started to lock in this position. My sweetheart, Nathan, was always on top of making sure I was as comfortable as possible. This man is such an incredible blessing in my life. Here he is, wrapping up my feet with warm blankets while I took a nap. 5-10 minutes at a time, upright as pictured, was all I was able to manage for 11 days. |
Other symptoms I dealt with:
- Completely reversed temperatures. Hot felt cold, cold felt scalding.
- Completely reversed sharp/soft sensations. A soft touch would feel like a knife blade against my skin. A pin prick felt like nothing at all. Nerve zaps, plus pins and needles, would come and go sporadically throughout my entire body.
- Sensitivity to sound was so bad that I made my boyfriend unplug our fridge to stop it from humming. (Since being home, I can't even hear the sound of my fridge at all!)
- Double vision. Everything was in the wrong place. When I looked at my feet, I would see 2 real feet in muted pastel colours, as well as their duplicates in full vivid colour. The especially disorienting part of this is that the feet that looked fake, were my real ones, and vice versa. Tripping happened frequently, if I could hold myself up to walk at all.
- Facial droop. My left eye started involuntarily closing, and my mouth pulled sideways. I could not close my lips around a straw, and could not feel my mouth/tongue.
- Constant twitching of the entire eye socket and upper lip, lasting months.
It only took 6 weeks to go into full relapse, from the last day of Gilenya.
This was after 2 months of carefully being tapered off of it.
This was after 2 months of carefully being tapered off of it.
I'm working on another post explaining where I'm at currently, and will share more pieces of this complicated puzzle soon.
...And I haven't even gotten to explaining the blood plasma transfusions, yet.
...And I haven't even gotten to explaining the blood plasma transfusions, yet.
Some things resolved, some have not at all, and my entire reality is different now.
(PS. During that cool film booking I had to leave from, I was convincingly strong and tough enough to even wind up with a referral to an exclusive agency for stunt performers in Vancouver. This agency is "hard to get into, and even harder to stay in" and I had a definitive "in". While I really wish I could run with it- my body is definitely not made for stunts. Thanks again, Shaw!
Well that's something I never thought I'd actually say...
 | July of 2019 I came close to losing everything. Now I'm ready to share what it's like to live the way I do, and why I do in the first place. |
Some of the things I've been through will make you say, "What the $#*&!?" But, I'll try to not dump it all on you at once, and perhaps you can relate to some of it. People have suggested I launch a blog for more than half my life. Now I'm at a point where it makes a little more sense to do it. So I'm just going to go for it, and dive deep, because that's the way I roll.
Here we go...
When you are at risk of losing everything due to circumstances entirely out of your control, it forces you into doing a very objective review of how you're living, what is most important, and who is most important. At my worst, when my brain could barely generate or piece together coherent thoughts, all I could think of was my family, my art, my home, my garden and my gecko, Leroy.
This year I spent my 30th birthday on life support, struggling to survive. Now I am home, and rebuilding. I am determined to nourish the things that are most valuable to me, because that's what life is all about.
To start the journey of unraveling what went on, why, and where I'm at now, stay tuned!
In this blog expect to read posts about health and wellness, multiple sclerosis (MS) and some other bizarre conditions ("Can you spell your diagnosis for me, again?"), baking (gluten free recipes!), houseplant care, DIY projects, and all things art related (painting, photography, illustration, modeling, makeup art, creative directing for photo shoots) and much more!
This year I spent my 30th birthday on life support, struggling to survive. Now I am home, and rebuilding. I am determined to nourish the things that are most valuable to me, because that's what life is all about.
To start the journey of unraveling what went on, why, and where I'm at now, stay tuned!
In this blog expect to read posts about health and wellness, multiple sclerosis (MS) and some other bizarre conditions ("Can you spell your diagnosis for me, again?"), baking (gluten free recipes!), houseplant care, DIY projects, and all things art related (painting, photography, illustration, modeling, makeup art, creative directing for photo shoots) and much more!
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