#worldIBDday

Okay, so yesterday was World IBD Day, but I didn’t get a chance to post…

For those who aren’t aware, IBD stands for Inflammatory Bowel Disease, a blanket term used for chronic auto-immune diseases that occur in the digestive tract. There are three forms of IBD: Crohn’s disease, Ulcerative colitis, and Indeterminate colitis. The main differences between the three are where in the tract the disease lives. Crohn’s can be active in the entire tract, colitis in the lower tract, and indeterminate is what happens when they can’t decide which of the first two you fall into.  I am one of 200,000 Canadians living with IBD, and since yesterday was about raising awareness I thought I’d take a minute to share my story.

It starts back in November 2001. I remember sitting in 10th grade English class when I first felt the pain in my stomach. I was 14 years old, and aside from being a little overweight had never had any health issues. The stomach ache continued for weeks, and when my mom took me to the doctor they said it was just nerves.

Over the next year and a half I became progressively sicker. By early 2003 the pain was debilitating. I dropped from 170 lbs to 115 lbs. My hair was falling out in clumps, my teeth were beginning to rot, and my eyesight was deteriorating. I slept nearly 20 hours a day. I had to go to the emergency room every other week to receive IV fluids because my body could no longer retain anything.

Ironically, with the weight loss, I’d frequently hear “Oh you lost weight! You look great!” because of course that’s what happens.

During 2002 the doctor tested me for numerous food intolerance’s. I spent 3 months off of dairy, 3 months off of gluten, 3 months off of sugar, but nothing made a difference. Stumped, my doctor sent me to McMaster to see a specialist.

In early 2003 I sat down with a pediatric gastroenterologist who asked me questions for about an hour. And at the end he said “you have either Crohn’s Disease or Ulcerative Colitis and we’ll do a test to find out which”. Those words meant nothing to me at the time, but he gave me some reading to do and the next week, at age 16, I had my first colonoscopy.

The specialist brought me back in a day or so after the scope to confirm that I did have Ulcerative Colitis and prescribe me Prednisone, explaining it’s long list of side effects. I went home, hopeful that this nightmare was over.

Unfortunately that wasn’t the case.

After a month of taking Prednisode with still worsening symptoms I was back at McMaster where I learned that my digestive system was so damaged that my body was simply unable to absorb anything I ingested. The only option would be to admit me to the hospital and be treated intravenously. I was admitted to the hospital and after about a week the stomach ache I’d had for 18 months eased up. For the first time in over a year I wasn’t rushing to the bathroom every hour. I was even able to look at food without becoming nauseous!

After several days of steady improvement I transitioned from IV to oral Prednisone and was released. There was nowhere to go but up!

Except, maybe… not quite?

Less than a week after being home I awoke in the middle of the night with severe chest pain and was rushed to the hospital. I was in the ICU for a few days, following a “cardiac event”, which I’d learn years later was a side effect of the Prednisone. It would be the first in a decade long struggle I’d have with treatment side effects.

You see, they don’t really know much about IBD. They know that for some unknown reason people’s immune systems rev up and begin to attack the digestive tract, but without knowing why, they don’t have many options to stop it. So the most common treatment is to suppress the immune system down to a level that it’s simply unable to attack. Great for ridding you of the pesky IBD symptoms, but horrible for helping your body fight literally anything else. As a result I caught every virus I came into contact with. And I’d not only catch every virus, I’d get way sicker than whoever I caught it from.

Living in a dorm during my first year of university and being in immunosuppressants was an especially bad combination. In the spring there was a virus going around residence that actually landed me in the hospital. I then caught another virus that was going around the hospital, which resulted in me being in a quarantined ward room of a foreign hospital. Fun times!

In 2013, nearly a decade after starting the immunosuppressants the ongoing cold I’d had all those years morphed into recurrent pneumonia. This ended up being a sign that the medication I was on had caused blood poisoning, and eventual septicemia, landing me once again in the hospital, followed by four months of bed rest. Because the only way to resolve the blood poisoning was to go off of the immunosuppressant (which, fun fact, contain classified carcinogens), wait, and hope the colitis didn’t relapse.

And then I got lucky. The toxicity passed and I didn’t relapse, and have not been on any UC meds since 2013. Over the last few months I’ve started having some minor symptoms, and am going for a scope tomorrow to see how things are looking. I don’t think my UC has relapsed, and hopefully I’m correct, but I also know that my string of good luck on that front is due to end sometime. Hopefully that sometime is not now, because I’m not going to lie, I’m terrified of having to go back on the meds…

Updated To Add:

No relapse!

12 Hospital Visits, In No Particular Order

Niagara Falls General Hospital, 2003

They called it a “moderate cardiac event” and put me in the ICU for a week. I was only allowed 2 visitors each day, and for only 1 hour total. When, at 16, I cried for my mom they broke the rule, but only once.

The room was perfectly white, except for a single red-tinged splat near the bathroom door.

I would hold my breath until the heart monitor alarmed, just for my own curiosity on its sensitivity. One of the nurses rolled in a television and lent me the only VHS tape that they had in the unit: Speed 2. I watched it on repeat for 4 days.

Sandra Bullock never did stop that cruise ship from hitting the dock.

St. Thomas’ Hospital, 2014

The admitting nurse brought me into a storage closet and inserted an IV in the dim light. He placed a piece of heavy duty tape over it, wrote my information on it, signed his name, and told me not to give the IV to anyone else.

Sat across the hallway was a man in handcuffs with two police officers on either side. He looked back and forth between myself and the couple that sat next to me, a pair of impeccably dressed men whose hands clung together in discomfort and fear. To the left lay a man on the floor, in a pool of his own urine. Doctors and nurses stepped over him, as if he were a permanent fixture in the doorway. Maybe he was.

Once in a room, a stranger entered. I can’t remember her name, though she told me several times. Her hair was dyed bright blue, and her glasses magnified her eyes to comical degrees. She was well past 80, sporting leopard print tights and a pageboy hat. She had a thick Cockney accent and a terrible stutter. She lifted her shirt to show me the tattoos that adorned her abdomen- Fairy tale imagery of butterflies and flowers, spiraling about her wrinkled skin. She told me of all the people she knew that had died in the hospital, how she’d cared for many of them in their final months or years. She was evicted twice from my room by the Aussie nurse on the unit, but she’d always return and continue her story.

They never used the IV line, but at least there was free Wi-Fi.

Niagara Falls General Hospital, 2010

I spent 4 days in the Emergency Room with a rampant fever that wouldn’t break. They ran every test they could think of, but could not find the issue. They even called in a special diagnostician team (like House) who asked a million and a half questions, before leaving and never returning.

On day 2 a doctor who was not one of mine came in and announced that my pregnancy test came back positive. When my mom burst out laughing he looked to me and asked, “Are you not Amanda?”

My dad came to visit one day wearing unreasonably form-fitting spandex exercise pants.

Laying on a gurney for 4 days is not comfortable, at all, FYI.

McMaster Children’s Hospital, 2003

This was my first long stint in a hospital. I was 16 and had been sick for well over a year. I didn’t know what was wrong, but my body was shutting down. I’d lost 50 lbs. in the months leading up, my hair had started falling out, my teeth were rotting, I’d been sleeping 20 hours a day, and I was slowly losing my vision.

I’d missed over 40 days of school that semester, and was admitted into the hospital just days before final exams.

I was in a double room, and my roommates rotated every couple of days. On the first night it was a 4 year old with a shattered arm. She screamed all night from the pain. My next roommate was a ginger girl who was about the same age as me. She was having her tonsils removed, and spent all day complaining to me about her mother, despite the nurses telling her not to talk. The bed was blessedly vacant for the last couple of nights.

A few days in my good friend Tara and her mom came to visit (the hospital was about an hour drive from where we lived), so naturally 5 minutes after they arrived the nurse took me out for tests and didn’t return me until the end of visiting hours.

I would go for walks around the hospital late at night, when the halls were empty and still. The hospital was colour coded, and I’d walk in a square, from Red to Purple to Blue to Yellow, and back to Red, where my wing was. I’d do the walk with my IV pole in tow, and it was inevitably start beeping about halfway through my walk. I’d ignore it.

Barnet Hospital, 2013

I was terrified. I couldn’t stop having panic attacks and I didn’t know why. WHAT WAS WRONG WITH ME?

The doctor at Barnet Hospital sent me in an ambulance to a country hospital for a psych assessment; in a town I’d never been, where I sat alone in a room for 6 hours. Eventually someone came to talk with me, and said the panic attacks weren’t anything to worry about and I was discharged.

It took me 3 hours to walk back to London along the country roads.

Eastbourne District General Hospital, 2006

It was my first year away at university and I’d had a fever for several days. When my limbs started to go numb my RA sent me to the local doctor, who immediately put me in a taxi to the hospital. I was admitted into a special ward for patients who were susceptible to infection. It was 9 women, all over the age of 85, and myself.

The nurse was angry with me for saying I was not from Australia, when she was sure I had an Australian accent. Myself and another patient on the ward tried to assure her that I was most definitely Canadian (the patient testifying that she had lived in Toronto for 50 years and would know the accent anywhere), but the nurse was having none of it. She called me a liar and said she would not care for liars.

The same nurse also happened to answer the telephone when my mom called the hospital, after the university had informed her that I’d been taken there. She told my mom that I had meningitis, though after hanging up would realize that she misread the doctor’s handwriting. Meanwhile my parents, neither of who had passports at the time, were on their way to Toronto in order to be issued emergency travel documents from the government so they could travel to the UK to be with their apparent meningitis infected child. (Don’t worry; someone eventually contacted them with the correct information.)

After several days my fever broke, and I was told I could go home in the morning. Unfortunately that night it was discovered that there was an outbreak of the Norovirus in the hospital, and within a few hours I had it.

Due to the severity of the outbreak the hospital was quarantined, and because I was infected, our room was a hot zone. Plastic was put over the door, no one was allowed in without proper HAZMAT outfitting, and none of us were allowed to leave the room, for any reason whatsoever. And I mean any reason. The woman next to me died on the third day of quarantine and remained there until it ended.

The Dean of my university, whom I had never met, heard about the situation and made a special request from the hospital to come and visit me. They suited him up and he was allowed entrance into the room. He told me through his paper and plastic helmet that he had a daughter my age and that thinking about her being alone in a hospital across the ocean made him quite emotional. So, he decided to come and visit me. It was such a kind gesture that still moves me to this day. He sat with me for the afternoon, and we chatted about this and that.

Welland County General Hospital, 2012

I watched him exhale and go very still, his cheeks sinking in and his face turning a strange shade of white. It was peaceful, but my heart is still broken.

Niagara Falls General Hospital, 2015

I started to have a terrible panic attack in the waiting area of the Emergency Room. A woman came over and began talking me through it. I later learned that she was a local yoga instructor who had taught a course specific to people with anxiety. She gave me her business card, and I texted her later to thank her / apologize.

She now sends me uplifting, life affirming texts every week. They always put a smile on my face.

Credit Valley Hospital, 2011

I was putting oil in my car in the parking lot of a Canadian Tire in Niagara Falls when the hood fell shut over my arm. A stranger who was close ran over and lifted it up, and my arm didn’t seem to be damaged. So, I got on the highway and headed to Toronto to write my Communications exam. However, as I got closer my wrist became more and more sore. By Mississauga it had doubled in size and turned blue, so I exited on Erin Mills Parkway and went into the Credit Valley Hospital ER. Panicking that my exam was in a few short hours turned out to be unnecessary as I was in, checked over, x-rayed, and plaster casted in under an hour.

I hopped back on the highway to Toronto and was soon after shouted at by my program coordinator for coming in. I said I was fine, but as the wet plaster left white marks on the ID office counter, she picked up the phone to call my instructor to have my exam pushed a couple days later.

On my way home I realized I was in a manic panic, after running a streetcar stop sign and bursting into frantic tears that lasted for an hour.

Niagara Falls General Hospital, 2003

The room was cluttered with disassembled beds and cribs, laid half-hazard against every available surface. There was a single assembled bed in the far corner, where I was assigned. I stayed there for several days, with a doctor checking in only on the first and the last day. His wife had unexpectedly gone into labour and he forgot to reassign my case. He transferred me to McMaster on the last day.

North Middlesex University Hospital, 2012

It had been a month since I’d arrived in London. I had a job working at the Natural History Museum, and things were going well, up until that day. I woke up very panicked, and it got worse as I made my way to work. When I got in I was having a difficult time, and my manager insisted I take the rest day off and head home. I assured that this wouldn’t be a common occurrence, and the attack was not in any way related to the job, which I quite enjoyed. She told me to stop being silly, that of course this wasn’t a problem and we’d return to normal tomorrow. So, I left. On my way home I started having a panic attack on the Piccadilly Line. It was by far one of the worst I’ve ever experienced to this day. The tunnel vision became more and more intense, until everything went black. I don’t remember what happened next.

My next memory is sitting on the platform of an unknown station, covered in blood. My nose had begun gushing at some point, and my uniform front was sopping from where my head had been leaned forward. And as the fog cleared I realized a woman was sitting next to me, asking me questions. I can’t remember her name, but she was from Poland and owned a café close to the station. She helped me up and took me to a TFL employee, who called an ambulance.

The paramedics arrived, and I insisted that I was all right. As my nose was still bleeding and I’d yet to calm down, they urged me into the ambulance and took me to the hospital.

The visit was uneventful. The blood loss wasn’t severe, my pressure was going down, and there wasn’t anything to worry about. They let me leave.

Except when I got out of the hospital, I didn’t have the slightest clue where I was, or how to get home. I didn’t have Internet on the cheap phone I’d picked up for emergencies when I’d arrived, so I called a friend in Ireland, not sure of what else to do. I gave her the name of the hospital and she kindly researched how to get back. She also topped up my Oyster card online, as I didn’t have enough money on it to get home. But I finally made it back, well after midnight.

No one batted an eyelash when I got back on the tube looking frazzled and covered in blood.

Oh, and I was fired from my job the next morning.

Niagara Falls General Hospital, 2013

I’d been back in Canada for less than 48 hours. I’d felt unwell on my first day back, but chalked it up to jet leg. But by day 2 I knew that something was wrong. I’d started working my first day back, but asked to leave on day 2 when I began having difficultly standing. A co-worker drove me home, and when I arrived back I asked my mom to drive me to the ER. She didn’t look thrilled at the prospect of spending 8 hours in the hospital waiting room, as we’d done so many times, but she obliged.

When I arrived and went into triage, I realized that I’d forgotten my health card. Having been out of the country for a year, I hadn’t had the chance to reassemble my wallet yet. And anyone who has had any experience with the Canadian health care system knows that arriving anywhere without a health card is a no-no.

As such, my first indication that something was wrong was when I realized that I didn’t have my card as the nurse was taking my vitals. I told him I’d have to go home and get it, but he shook his head and said he couldn’t let me leave. He walked me over to the registration desk and said something to the nurse, who quickly got me registered, with no comment about the health card.

I then got up and went over to find my mom in the waiting room. Anticipating a long wait, she had brought her students workbooks to mark and had them strewn across the chairs around her. As I approached the triage nurse came up behind me and took my arm, saying that a bed was ready. Both my mom and I looked at him in total confusion. Shouldn’t I be called in 6 hours from now?

He took me back to a private room, and then next 20 minutes were a flurry of activity. Chest x-rays, blood work, an EKG. There were nurses and doctors running in and out, and I began to freak out, having no idea what has happening. I’d been hooked up to a heart monitor and when the panic attack started the nurses circled around me telling me I needed to calm down.

During all this my mom stood baffled in the corner.

Not long after the doctor returned with test results. He said it was a good thing I came in when I did. He said that if I’d gone home and gone to bed, I probably would have died in my sleep.

hospital sign_15

Life, Love, and CNN

As many of you know my life is vast stretches of boredom punctuated my moments of random and moderately exciting events. (Yes, I altered the old war adage there, sue me.) Aside from the drunken woman inviting me to hang with Meryl Streep in November, not much has been happening as of late. I’ve been sick, unable to find a job, and generally just blah on the current state of things.

Though in January I decided to make the best of the blah, and have gone on a bit of self-improvement kick. I’ve been seeing a counsellor and recently began taking part in an ‘Anxiety and Panic Management’ group. I figured it’s time to get this Panic Disorder under control, so it doesn’t kick my butt quite as badly when I finally do find permanent work. I’ve also decided to give the whole healthy living thing a go (it’s all the rage, I hear) and joined a gym. I had my first session this morning with my dad’s personal trainer. It was painful (literally) but I’m going to do my best to keep it up. I think my dad’s persistence will help keep me in line.

I’ve also been doing some freelance comms work. I’m taking payment in the form of home-cooked meals, handmade gifts, sneakers, and rides, but at least it’s experience. And it’s keeping me busy, which is much needed.

In other news- Two loves of my life had birthdays this month. Sir Percy turned one, and my BFF Jacob is seven! Time sure does fly.

P

Percy’s party was this past weekend, and we’re celebrating Jacob’s birthday in a few days. He’s requested to spend the night in hotel rather than have a party, and I’ve been invited to join. I’m excited to spend the special day with him and mum.

Going back to my original statement about bits of random excitement- I actually was hit with such a moment last week. It was no Meryl moment (really, what could top that?), but it was still pretty cool. I was contacted by CNN who asked if they could use some of my photos. It started out just on their iReport section, but the photos were liked by Travel department, who used them in an article. As a result I got a shout-out on CNN.com:

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Ah, my 15 minutes of fame! How fun you were.

Now back to the monotony. Oh, and I’m still waiting to hear about my eyes. //Groans in frustration//

3 Things

In an attempt to begin working my way out of my current rut, I’m putting myself on what I’m calling the ‘3 Things Weekly Challenge’. Every week I need to make a conscious effort to do each of the following (often difficult/scary) things:

  1. Make a decision / take an action that puts my health before anything else.
  2. Apply for / take action towards a dream job, regardless of the likelihood of success.
  3. Have a proper (non-email / text), honest conversation with someone about how things are going.

And when doing each of these things I’m not allowed to get myself worked up, be embarrassed, fear failure or judgement, or give up before trying.

I can’t say what positive changes this will make, if any, but I figure it’s worth a shot.

Also! Autumn is here! HUZZAH!

An Open Letter to the Ontario Ministry of Health:

I am angry. I am frustrated. And I am fed up.

For six years I have been dealing with mental health issues. For the entirety of this time I have been actively, and aggressively, seeking treatment for these issues, and am refused time and time again. The refusal is not a blatant denial, but rather a long drawn out process that lulls you in to a sense of security before pulling the rug out from under you.

For six years I have gone from doctor to doctor, and received nothing more than a fake smile and a gentle shove out the door.

The first psychiatrist I ever met with told me after a few months of observation that I’m obviously “cured” because I enjoy traveling.

Another told me that I should stop my whining, as the referral I requested did nothing more than bog down the system.

And yesterday I met with  a new psychiatrist who told me that I wasn’t extreme enough a case to be taken on as a patient. And that I was more than capable of monitoring my own medication increases and reactions. So, after one appointment filled with condescending comments, I was handed a prescription for Prozac and told to have a nice day. She said that if I really felt I needed a psychiatrist I could request a referral from a family doctor to see someone else.

Gee, thanks. Can I mention that it takes at least six months to get in to someone after a referral is submitted? And that I’ve tapped out my options, as OHIP will refuse to cover a psychiatrist visit to anyone other than the one closest to the address on your health card?

So, basically, I’m not sick enough to warrant treatment. Mental health services are not important enough to warrant province-wide coverage. Oh, and as a student with no income I’m not poor enough to get help with covering the costs of my prescriptions.

There’s a flaw in this system.

There has been so much talk in the media this year encouraging openness and understanding when it comes to mental health. Yet the very system we’re to seek help from couldn’t give less of a damn.

Today, I am ashamed. Not about this disease, a shame that took me many years to get over. No, today I am ashamed of my government, and my country.

I know that in spite of these obstacles I will be alright. But I also know that because of them, so many others will not.