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. 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.
Other symptoms I dealt with:
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. 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. 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!
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Well that's something I never thought I'd actually say...
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! |
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