Gilenya Rebound- From thriving to barely surviving, in only 6 weeks.

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.

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.

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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.)

• 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.

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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.

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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.

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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.

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Some things resolved, some have not at all, and my entire reality is different now.

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(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!