What Should Have Been, What Could Have been, and What Happened

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A 30th birthday should be special. It’s a milestone that should be celebrated. My 30th birthday came and went with little fuss. It certainly wasn’t what it “should” have been; More importantly, it wasn’t what it “could” have been.

On December 21st, the day before I was set to leave to head home for the holidays, I went to work, as usual, and afterwards headed over to my friend’s place for our annual Christmas dinner (pizza this year) and gift exchange. That evening I had noticed that a pain would shoot through my neck and into my head whenever I bent down. Prone to headaches, migraines, and suffering from stiffness that I attributed to sitting at a desk job, with poor posture, for 6 years, I made note of it but brushed it off as a long day.

The next day I had a flight to catch but not before an early morning brow and nail appointment. It was at the salon that I had first noticed that I could barely turn my neck either way – I was super stiff, and I was just thankful that I was flying home rather than taking the bus. Once again, I brushed off the stiffness as occupational, or perhaps a slight injury from being jerked the wrong way on the streetcar. I assumed that I would get home, relax, and wake up feeling much better. I certainly was wrong.

The night I flew in my brother and I headed to watch the newest Star Wars movie in DBox (motion seats) 3D. I was nauseous the whole time, however the vibration of the seats seemed to sooth my neck stiffness a bit – “Free massage!”, I joked.

At this point, I should note that I had been throwing up for about a month or so, nearly every day. As someone who suffers from Ulcerative Colitis, I chocked this up to a new symptom of the illness. The problem with suffering from an underlying, chronic illness is that you essentially attribute most new health symptoms to it, especially when they fit the bill.

As the days went on, the stiffness quickly turned to pain that went through my neck and into the base of my skull. Fortunately for me, my parent’s home is equipped with every medical gadget you could imagine, and I love them for it! They have what’s called a TENS/EMS machine, which essentially sends little jolts of electricity to your muscles – An odd sensation, however when applied to my neck and shoulders, a bit of a relief. My mother would lovingly apply that, and I’d place a warm Magic Bag over it nearly ’round the clock. I propped myself up in the comfy recliner and hoped for the best every day.

I heartbreakingly missed my nephew’s 7th birthday party. Missed Christmas Eve at my father’s place, and nearly missed Christmas dinner as well. Christmas Eve, I lied awake all night. My niece was sleeping with me, and I was so worried to wake her. The pain and stiffness was horrible. I tried to quietly grab a heating pad for my neck, and my niece stirred awake, simply to sleepily ask, “Auntie, will you hold my hand while we sleep?” My heart melted. I lied there trying to soak in one of the sweetest moments of being an Auntie, while simultaneously waiting for her tiny grip to loosen as my pain got so severe.

Eventually, I quietly ducked into the bathroom to see if a hot shower would help. It didn’t. In that moment, I was ever so tempted to just curl up on the bathroom floor and cry myself to sleep. I was physically, mentally, and emotionally exhausted, and beyond sleep-deprived. This was my one visit home the entire year; My one vacation that I had waited an entire year for – This was not how it was supposed to go.

I crept into my mom’s room and collapsed on her bed in tears. If ever there was a time I just couldn’t be strong anymore, it was in this moment where all I needed was my mommy. She got the TENS machine, and heated the Magic Bag. When I feel sick, I like to lay on the floor so she got me a pillow, covered me in a blanket, and sat there next to me, stroking my back occasionally, as I bawled my eyes out; Sick and tired of being sick and tired. I’ve lived on my own for nearly 12 years, and have taken care of myself. I’ve needed to be strong, and resilient, and self-reliant. So in this moment, to simply just be my mother’s baby girl again – To let go, and have someone else take care of me, it meant the world. Even though I was in all of this pain, I loved this moment with my mother.

My parents would say they were taking me to the clinic or the ER every day, however I was stubborn; Sure that with just “one more day” of rest I would wake up feeling better. And I did, sort of – The stiffness lessened, and the pain would come and go. I dreaded the thought of spending an entire day propped in a waiting room chair, in a city with only one hospital. I decided to wait on seeing a doctor until I got back home to Toronto where I have top hospitals, a wonderful specialist, and a family doctor familiar with my health.

After I arrived home, I put myself on self-imposed bed-rest. I moved my TV into my room, propped up my pillows, and got some much needed rest over the course of a few days. Then, New Year’s Eve came – I woke that day to find the pain and stiffness had almost completely gone away. I was cautiously optimistic that I had finally healed, however still in no shape to party. The plan for the night was to simply head over to my best friend’s place where we would eat take-out, have some drinks, watch some movies – Β A fitting way to end the terrible year that was 2016.

Though we were staying in, ever-the-Sephora addicts, we both had decided we’d still do our hair and make-up for the night. By the time I finished this process, it was back… All of the pain and stiffness. I also felt drunk/high without taking a sip of anything. I once again brushed it off, and decided I would try to enjoy the night. My friend and I have the kind of friendship where I can lay on her floor in pain as if I’m at home so I took my Magic Bag, and some sweats to change into and headed out.

As the night went on, the pain got worse and worse. And then the vomiting was back with vengeance. I also noticed that I jumbled my words a few times, and asked my friend to make note of it. I just wanted to make it to midnight, and preferably not spend the countdown hunched over a toilet (which I nearly did). Honorable mention to Mariah Carey for providing a moment of humour in everything with that surely historic, horrific lip-syncing fiasco, though.

10, 9… 3, 2, 1 – Happy New Year! Not so much. I turned to my friend and bawled. I was so sick; So sick of being sick. This year was horrible, and the tears were mixed with the joy of it’s ending, the new beginning ahead, and the pain I was feeling. I had broken down like this in front of my friend before, however mostly in the bathroom at work. Never like this. I’m always so busy trying to be strong, and for once, I just couldn’t hold it together. I let it all out.

Given that the next two days were holidays, I decided to simply give myself some more rest as clinics would be closed and ERs likely packed. I decided I would wait until my lunch break on my first day back at work to head to one of the many clinics close by.

I felt okay when I headed into work that morning – Everything was manageable. However, the stiffness and pain increased the more I sat upright at my desk so I kept an eye on the wait time at the closest clinic. When I saw a window with a short, 20-minute wait time, I asked my boss if I could take an early lunch around 10:30 a.m. or so to head over quickly. Fortunately for me, I have a very understanding boss who told me to hurry up and take advantage of the short wait time. I figured it would be a quick in-and-out with a referral to a chiropractor and/or an RMT. I was so very wrong.

I quickly was in to see the doctor – I went over all of my symptoms, and she did all of the standard vitals and neurological tests that come with such complaints. I passed all except that it was obvious that I was out-of-it, and my resting pulse was quite high at 114bpm on top of the pain. With this, and the mention of my bought of slurred speech on New Year’s, the doctor had a hunch there was more and sent me directly to the ER at St. Michael’s Hospital (where all of my doctor’s and specialists are affiliated) with a note for further testing. After debate about calling an ambulance, she agreed that it would be fine for me to take a cab if my friend, who had come from our office to bring me comfy shoes for my ER wait, would accompany me. She did.

The cab ride was quick, and the ER was exactly as packed as I had dreaded it would be after the holidays. I was all checked in by around noon, and sent my friend back to work, as I knew I’d be in for a long wait – Lord knows a work day feels like a party compared to a day propped up in an uncomfortable ER waiting room chair.

The longer I sat upright the worse my symptoms got. If there’s one thing that I’ve learnt from multiple, long ER visits, it’s to make sure that you make yourself, and any worsening symptoms known to the nurses’s station. By the time I left, the nurse at the desk certainly knew my name – Advocating for my health is something I’ve become rather good at. However, on a day when they were running a 21 person wait, as I was told, I’m not sure how high a priority I was, regardless.

As the hours ticked by, and I looked around the waiting room, I couldn’t help but become increasingly annoyed at the number of people who were there for things that they should have been in a clinic for instead. Minor coughs. Colds. Unlikely cases of the flu. To me, unless it’s a severe emergency or clinics are closed for the day, you should always head to a walk-in clinic or to see your family doctor before heading to the ER. It’s senseless to take time away from people who genuinely need the care more urgently.

I was finally called into a room at around 3 p.m. Though it felt like an eternity with my head pounding and pulse ringing in my ears, 3 hours is actually one of the shorter ER wait times that I’ve had. I found a way to recline the odd exam chair in the room, and curled up in a ball for a little relief. It was about another hour after that when a doctor finally came in. She ran all of the similar tests that the doctor at the walk-in clinic had run – Vitals, “look at this light”, “touch my finger, touch your nose”, “walk in a straight line”. I seemed to pass everything once again, and everything looked “normal”, however they would do a CT scan just to be sure. Another moment of relief, however exactly the answer I was expecting.

 

After a nurse took my blood, they hooked me up to a saline drip, as well as an anti-nausea IV as all of the sitting upright was taking it’s toll. Due to the lack of space, I was sent back out in the waiting room, tethered to my pole, or my “leash” as my Papa would have called it. Having to simply walk back and forth to the washroom with this, my coat, and bags was becoming an exhausting challenge alone. To emphasize how overcrowded the ER was that day, I witnessed nurses drawing blood in the waiting room chairs. Overwhelmed was an understatement.

I’ve grown accustomed to spending these long waits alone so I actually surprised myself when my friend offered to return to my side after work, and instead of telling her not to worry, I let myself be weak for once and accept the company, and help. Later, I would see this as fate, as I had no idea just how much having her there would mean. How much I should never have been alone, and thank God, for once, I wasn’t.

Once again, the hours ticked by. It became increasingly more difficult to sit in the chair. I was probably becoming one of the most annoying patients with the nurses but I could slowly feel that something wasn’t right. I was told that my CT scan was being held up as they awaited the results of my bloodwork. By 7 p.m. I inquired again only to find out that all but one of the results were in – The pregnancy test. I had a good laugh, and told the guy there’s not a chance in hell but protocol is protocol. If ever there were a time when it sucks to be a woman… A man would have had his CT scan hours ahead me all thanks to my gender. Thank you, uterus!

It was about 8 p.m. when I was taken for my CT scan. It was a relief to sit on a floor that wasn’t overflowing with people – Space to finally breathe! The scan itself was super fast, and in a blink we were back in the waiting room watching CP24. The results soon followed. Surprisingly fast. Surprising… In general.

I should have clued in that something was wrong the moment that the doctor whisked me into a private room. Positive results never come in such privacy. But I didn’t clue in in the least. So focused on how terrible I was feeling and on finally being able to leave, I simply followed the doctor into the room, alone, and without hesitation; Expecting the expected. Or rather, what I had expected, which was nothing. Which, was wrong.

I felt my legs go weak and needed to sit down the moment the doctor told me the results – That they had found a blood clot in my neck; At the base of my skull. These were not words that I was prepared to hear in the least. My stomach turned. Only hours ago I was running off quickly to a walk-in clinic, thinking I’d leave with a referral to a chiropractor – How on earth did I get here… To this moment? Nothing felt real. Growing up with a father who was diagnosed with a blood clot, the severity of it was drilled into my brain from an early age. I excused myself to the washroom and cried. I texted my mom, and I texted my friend who was out there waiting for me – I told her it wasn’t good, and that I would tell her in person.

One look at her, and I started crying again. Even hearing the words come out of my mouth didn’t sound real. I wasn’t prepared for this. I’m prepared for everything. I pack a hospital bag every time I start to feel terribly ill. As I sat there waiting for someone from the Neurology team to come assess me to be admitted, I had no bag.

Bless my friend. She is truly the best. We’re both just as practical so her first words were asking what she could do… What needed to be done? From my last hospital stay, I knew I would need pajamas, and food. I desperately needed food. She ran off, with barely 15 minutes until the close of the mall next door, and raced back just as fast with both.

Fortunately, in the meantime, the doctor had found me a comfy recliner tucked into a corner that I could lay back in untilΒ I was admitted and they found me a room. I can’t tell you how badly I needed this chair. I laid there and cried. I was exhausted and overwhelmed as the doctor from Neuro came back and forth. I’m so well-versed and used to the jargon related to my usual illness – Well researched, and able to carry on somewhat educated conversations with my doctors about it. However, this was all new to me. Everything was completely going over my head. In my exhaustion, I allowed myself to be lost and to simply trust the doctors.

I hugged my friend goodbye at 10:30 p.m., put on my comfy pajamas, and waited another 4 hours for a room. Those 4 hours are a complete blur of tears and text messages that I can barely recall. Nothing felt better than curling up in that hospital bed, beside the window, at 2:30 a.m. Fittingly, my last question for the nurse before passing out for the night was if I would be able to eat in the morning. Typical, me!

If I thought those 4 hours waiting for a room were a blur, perhaps the week that followed in that room were even more so.

I was started on IV blood thinners along with a few other bags of what I can’t remember – My IV pole was full! And heavy. If there’s ever a time you hate being a person that gets up for the washroom at least once an hour, it’s when you’re attached to an old IV pole. Once again, my “leash” as I lovingly called it in an ode to my beloved, Papa.

Every day I was woken up promptly around 7 a.m. for bloodwork, and whisked away to a different scan or test or 3. My record for bloodwork was 5 times in one day as it kept clotting before it could get to the lab. My arms were bruised, however I’ve never been more impressed with the blood taking skills of the nurses than during this stay – Bless them, they were usually painless.

One of the theories as to why the clot occurred is that the steroids I had begun taking again for my UC had played a role. Though, I have yet to see a hematologist to get to the exact root of the cause, this triggered meetings with my GI specialist who is also perfectly stationed at the hospital I was at; Carefully choreographed by the doctor who sent me there. If there’s one piece of advice that I can give when you’re dealing with illness, try to have all of your specialists under one roof if you can, and should you ever need to visit an emergency room, do so at that same hospital. It makes a world of difference.

Meetings with my GI triggered more unpleasant testing and the addition of IV steroids – (Yay, another addition to the leash!) By a few days into my stay, I had IVs in each arm. One of which I couldn’t even unhook to shower – If you’ve never showered with an IV pole attached to you, let me tell you, it takes talent.

After a week passed, I suddenly found myself facing discharge, which came rather unexpectedly. Time has a way of flying in the hospital, even though it doesn’t feel like it. It’s certainly not a place for rest. The thought of leaving while knowing I still had a huge clot in the base of my skull was odd to say the least, however how I craved my own bed, and longed to get away from my 24/7 snoring room mate.

You see, it wasn’t until the day before I left that I was finally told just how bad my blood clot was… Or should I say is, as it’s still in there. Large enough that it nearly blocked off the entire vein. Large enough to surprise everyone that I hadn’t had any neurological symptoms yet. Large enough that I could have had a stroke or any number of other complications. Large enough to make me extremely lucky that what could have been isn’t what happened. Not for me, anyways.

To say that I am lucky that I went to the right walk-in clinic, where the right doctor had a hunch, and made the right move, is an understatement. That I waited until I got back to Toronto to have this properly diagnosed. That fate somehow lined up for me. That all of these hunches lead to this discovery before something worse happened. There are no words. I am beyond grateful.

I’ve now been at home, on bed-rest for a couple of weeks. I go back and forth to see my doctors and to the hospital for bloodwork as they try to get my blood thinner dosage to level out. Right now, it constantly seems low, which according to my neurologist likely just means I have a really good liver that’s flushing it out – Yay, to one part of my body kicking ass at it’s job, albeit at the wrong time.

All of this has also triggered my GI specialist to start me on a new medication I’ve long been weary to try, as it feels quite chemo-like with it’s 2 hour long infusions, and energy-sucking side effects. However, I consider this all part of the twist of fate, and I’m rolling with it. I want to come out of all of this healthier than ever and able to enjoy life to it’s fullest once more.

In the midst of this all, I turned 30 – January 19th. A milestone the girl who rarely celebrates a birthday had looked forward to dancing away. I spent the week leading up to it angry and bitter that this was how I was going to end my 20’s. That this was supposed to be a fun time. That this should have been different.

And then the day came and I realized as much as it SHOULD have been everything I had dreamed of, it was actually more than… because it was nothing like what it COULD have been: I was here. I was on the mend. I hadn’t had a stroke or a seizure or any other number of debilitating neurological problems.

I was and I am functioning; healing; alive. What should have been for that day didn’t happen but neither did what could have. In the end, this is what matters.

What didn’t happen more so than what did. What is, right now, more than any amount of dancing for one night. The ability to dance for the rest of my life. And after all this, I certainly plan to dance through it all.

xo,

D

 


I need to take a moment here to thank my friend Vanessa – My friend, I would be lost without you. This girl has stuck with me through it all. She not only went out of her way every night to make sure that I had what I needed, and wasn’t alone, she also took care of my sweet furbaby. I don’t know how she juggled it all but in my eyes she is Wonder Woman and none of my recovery would have, or would be possible without her. She truly is the best friend a girl could ask for; I don’t even know how I deserve her friendship!

Thank you also to my Mom and Step-Dad for making the trip down to visit me in the hospital, and sitting in those uncomfortable chairs for hours and hours and days without complaint. For bringing me birthday presents and cake. For making me feel special, and like your little girl again for a couple of days. It meant the world to me, and more. I’m so very lucky to have you both.

And finally, to everyone else who has visited me, sent me well-wishes and their support. Friends and strangers. People near and far. Thank you so much. I may not always be able to respond but knowing I have you all has made a world of difference during this time. I’m blessed beyond measure.

Most of all, I hope that my story serves a reminder to make your health a priority. Go with your gut. Roll with hunches. Because you just never know.

With, love.

 

 

 

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