I’ve heard that smells are often a common trigger for memories because they connect to certain areas in the brain responsible for sensations and emotions. When I was last discharged I bid a fair adieu to those foul, antiseptic, nauseating, sterile scents of a hospital and didn’t look back. But I didn’t think I’d experience them again so soon….this time as a visitor.
This past week I experienced first hand what it was like to stand bedside to a loved one. Getting the call that an ambulance was coming and to meet at St. Mikes, we raced against traffic and this time I was the one paying to park (but only once thanks to friends who share their underground parking). I stood while we waited in emergency for X-Ray results and a prognosis, only to feel the stomach churn of bad news and then continue to wait for a bed upstairs.
It’s odd being in this new role, and suddenly I felt a new perspective take on a whole different meaning. I always felt sad for my family and friends who had to endure long waits, uncomfortable chairs, paying to park, searching for the correct room, lugging care packages and being on call for any new developments. But for the first time I REALLY understood that none of that matters. They didn’t care about watching NBA playoffs on a small screen or having to wear a gown and gloves while in isolation. They cared about me.
When then nurse came to tell us they had finished resetting my Dad’s broken bones the first thing she said was, “He’s a little out of it, but he’s funny!” I can only hope that I offered the same comic relief as him from my own hospital admissions. Seeing how friendly he was to the nurses, doctors and roommates I again, only hope I offered the same positivity as him and gracious attitude as you always meet someone who is worse off than you.
I’ve been there Big Guy. I know the struggle of restless nights and a dreary looking recovery ahead. I know feeling of life being put on hold and the “what now?” questions. I know how difficult it is to depend on other people. I know how frustrating is it to feel like something so simple like walking or going to the bathroom can be taken for granted. I know the “why me?” feeling. But it’s just a blip. A small blip in your life, and now I’m strong enough to help carry your baggage too.
A lot of people go through trauma. And we all deal with it differently. I would even argue that my experience with IBD can barely be considered trauma because of how much positivity came from it. But it was. It was traumatic in the sense that it was deeply agonizing and the emotional response was as soul jerking as the physicality.
I didn’t recognize my illness as trauma because it happened over such an extended length of time. And each set back was just the universe chipping away until eventually two years later I realized how much of me was missing (literally an entire organ). But there was this whole shift in my brain, altering my perception of life and resilience. And it’s only now when I can process the magnitude of all of it that I realize how traumatic it really was.
So how are you supposed to just move on? Everything is peachy keen and we just forget about it? Like nothing happened we just go on with life and that’s that? That’s what it feels like. It feels like I have this happy little life and I should be content and calm. But I don’t. Somehow I feel the sadness and grief hitting me like a ton of bricks.
I realized something was wrong when I had two panic attacks in one week. I’m not going to go into a whole lot of detail because I’ll likely write about this in a separate post but when you’re jolted awake by pure terror, it’s probably your body saying we have an issue. And it wasn’t until my sister commented, “maybe you have a bit of PTSD,” that I really considered the past two and a half years as real trauma.
From my understanding most people experience trauma as one horrific, catastrophic event that they then deal with after. They have time to process this one event and navigate the pain in a safe place. And in no way do I devalue anyone else’s anguish because I am well aware that my baggage is no heavier than the next guy’s.
But for me it wasn’t just one event, which is why this healing is so confusing. It was 7 hospital admissions. It was talking about surgery for 6 months and doing everything we could to avoid it. And then it was surgery. And another surgery. And another. It was pulling out strands of hair one by one, for months. It was waking up each morning realizing my cheeks were bigger than the day before. It was 2 C-Diff infections. It was puking in emergency room because of a bowel obstruction…on my birthday. It was shitting my pants in my car. It was missing out on fun because I was sleeping. It was falling down the stairs because I lost so much muscle mass in my legs. It was looking in the mirror and not feeling pretty…for years. It was dehydration. It was thousands of dollars spent on ostomy supplies. It was losing friends who didn’t know how to deal. And it was looking at my stomach seeing 7 incision scars. It was chaos.
But each little chip was just a minor event. That just came and went and we dealt with as one little blip after another. But no one calculated that one minor event after another equals real trauma. Real grief and real pain. So here I am in my happy little apartment, when everything is perfect being hit by a truck of distress.
So now what? Well luckily I have a person who will drive me around in the middle of the night during a panic attack, just talking me down. And that person won’t laugh or dismiss how horrendous I feel, while also reaffirming that I don’t need to go to the hospital because I’m not actually having a heart attack. That’s step one.
And from there I take one day at a time. I stretch. I slow down. I write. I sleep. I eat well. I breath. Eventually I will get counsel, because it definitely is at the point where I can’t navigate on my own. But in the mean time I’m reaching out. I can’t possibly be the only one who is dealing with trauma only after everything is supposed to be healing. It’s like feeling sick when you’re in remission. And I know there has got to be IBD people out there who know what I’m talking about. So if you do, please…get at me.
In the mean time….I’m going to have some mimosas.
Happy long weekend lovers!
Since my J-Pouch surgery and my fresh start, I think I give off this perception that everything is “normal” and I have this little happy, healthy life. And for the most part that is true. I don’t feel sick anymore. But there are those days, those days that life just hits you and I can’t help but feel that because of IBD, they hit us a little harder.
I don’t think people yet recognize that those small challenges EVERYONE faces, they seem to be a little bit more difficult for someone with a chronic illness to overcome, especially when your bowel is damaged. I think a lot of IBDers can relate to this but I thought I’d bring a bit of awareness to how our illness continues past a flare up. Don’t confuse this post as a cry for sympathy. Just an explanation that when I say I’m “tired” I don’t mean, “I stayed up too late watching Netflix.”
Life Hits You Harder When You Have….
A Cold/ Flu: When you have an autoimmune disease, your body’s defensive mechanism is already out of whack. And since the majority of your immune system lives in your gut (which I have had removed, or for people with IBD, is sick), one can understand how our bodies are a little bit more susceptible to the common cold and flu. I usually do my due diligence by taking my multis and Vitamin C’s, but keep in mind I also work with children (little germ invested munchkins). So I’ve realized I pick up those minor infections and viruses fairly easily. When I do get sick, it seems to really knock me off my feet, and it takes me longer to recover. This could be because I’m not absorbing those Tylenol Cold & Flu pills very well. It also could be because on the very basic level, when you’re sick you need rest and fluids, both of which are difficult for me to get enough of. And if it’s a stomach flu, when ANYONE feels dehydrated, I can assure you I feel that. The last time I had the flu, which was going around at work (shocking) I actually took myself to the emergency room just so I could get an IV.
A Hangover: Speaking of dehydration. When anyone drinks alcohol, your body is depleted of electrolytes and fluid. That’s why we feel like crap waking up with a hangover because we’re dehydrated, and the first thing we reach for is the Gatorade. Your large intestine is responsible for water absorption and feeding it back into your body. When you don’t have a colon, or it’s not working properly, you’re not retaining water and are likely getting dehydrated 30% faster (that number was given to me from my GI). As you can imagine when I drink, even the slightest bit of alcohol, my hangovers are SOOO much worse. I’ll have a couple of glasses of wine and it knocks me out for 2 days. I try and keep up by drinking just as much water and limiting myself….but it’s summer, I love wine and I have no self control.
A rough night’s sleep: I generally get up 1-2 times per night to go to the bathroom, and that’s after taking my Lomotil. But if I eat something upsetting, or it’s too hot, or I’m anxious and I’m having a hard time sleeping anyways, I wake up unrested and absolutely exhausted. I need to be able to sleep in between those bathroom breaks and when my sleep is disrupted even further man does it effect me. I struggle with my energy levels to begin with, partially because of that dehydration aspect and also because of the nutritional absorption, so if I don’t get enough sleep I really really struggle throughout the day. And for people who are in a flare up, it’s likely they’re anemic, feeling ill, up more that 2 times for sure, and are dropping weight like crazy so you can imagine how difficult it is to function.
A Period: (This may be TMI but I’m going to cover this anyways) During a flare up, you’re having diarrhea likely 10+ times a day. And what people don’t usually understand is that it’s not your regular diarrhea. It’s blood. I was literally just pissing blood out of my ass 10+ times a day, which obviously lead to serious anemia. This affects energy levels, heart rates, skin colour, and overall health since you literally don’t have enough blood in your body. So imagine every 28 days when you lose even more. When I was sick sick, my periods absolutely drained me. I think I was napping about 2 times a day, and it eventually got to the point where my body said, “Nope. You can’t have a period anymore,” and they stopped all together.Now that my surgeries are over you’d think my periods would be all normal again. Which for the most part they are. Except again, I struggle with those energy levels and for 4-6 days a month I REALLY struggle. Also, (again TMI) with a J-Pouch I find myself straining sometimes. In turn, I’m actually changing my products more frequently. Just annoying right? And expensive.
A Bad Day: You know those days where you sleep through your alarm, or you get a flat tire, your coworkers are annoying, you fight with your mom or you burn your toast? They happen to us all. But for some reason, us IBDers just FEEL it harder. I carry the extra baggage of trauma and a heavy heart to begin with and then those days hit and I’m like “Really universe?! After everything I’ve been through you couldn’t just let me sip my coffee without spilling it on my white pants?!” I’m just more emotional and sensitive I guess and when the coffee spills I well up in tears and it feels like another mountain to climb.
I’ve connected with so many people with IBD and I always hear how strong we are and how we can overcome anything if we can deal with Crohn’s or colitis. But I actually think it’s the opposite. It’s softened me. It’s made me vulnerable and susceptible. It’s not a bad thing by any means but like I said, things just hit me harder.
I realize this post sounds like a pitty party but it’s not. It’s very simply because I KNOW there are readers who this will resonate with. And on the other side of this, those incredible moments and extraordinary days ALSO hit harder. Those days of sunshine and laughter, warm drinks, cozy evenings, a good book, a hard workout, a new purchase, a drive with the windows down, an upbeat song, a fresh meal, or an accomplished work day. A new apartment, a new puppy or a new vacation. THOSE days hit hard too. Those are the days that are unforgettable because we’re well enough to enjoy them. We savor them and appreciate them. Our baggage is still heavy but in those moments, we’re strong enough to carry it.
I talk a lot about how IBD put my life on hold (see: The Waiting Game) and how it ripped me off of the last 2 years. And it’s partially been my fault for not embracing opportunity more, but rather saying, “When I’m not sick anymore,” or “After my next surgery.” But partially there is truth to that. For a while I was mad at myself for using IBD as an excuse and felt guilty for not being proactive and more ambitious regardless of my circumstances. But then there came a point where I allowed myself to just wait. To accept that taking care of myself was my number one, and ONLY priority, and it was okay to just take the time.
To be more specific, given multiple leave of absences from work, (some unplanned, some scheduled), I felt like I couldn’t really move forward in my career. Where else was I going to find a workplace that was so accommodating or would allow me to keep a full time position, around all these absences? And I also felt like I couldn’t move out of my parents’ house, given these long periods of unemployment where I needed that support from them until I recovered. I also felt like I couldn’t date because it was never the right time, and what if I just sucked someone else into the drama of my medical escapade? So I waited. And I lived the mundane, routine, familiar and comfortable state of my life.
When I returned home from England I don’t think many people realized how truly devastated I really felt. For the first time in my life I didn’t know what my future looked like. This little dream of mine to teach across seas and travel while doing it, completely collapsed and I surrendered to the destruction by returning home with no back-up plan. And it was crushing as I was consumed by an overwhelming feeling of uncertainty.
But then I found Mazo. This little child care centre that took me in immediately, regardless of my lack of experience with early years, and quickly became my second home for the next three years. And this little home of mine kept me safe while I faced a new kind of devastation, and taught me what it really means for ALL of us to carry some sort of baggage.
For the first year I was a Preschool teacher. And I learned about fairy tales, outer space, gardening, jungle animals and celebrations. I learned patience and persistence while facing snowsuits and tantrums and boo boos. I learned that a giant box could be made into a haunted house, a space planetarium, a castle or a school bus. We had tea parties, dance parties, costume parties, graduation parties and goodbye parties. I learned about friendships and imagination and magic. And most importantly I learned the lyrics to every song on the Frozen soundtrack.
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In my second year I went to our School Age Program: my comfort zone, my experienced group, my people. I learned about science experiments, cooking for a restaurant, knitting, gymnastics, and origami. I learned about girl drama, stubbornness and the struggles of not wanting to do homework at the YMCA. We played SPUD, Diamond Smugglers, Capture the Flag, Chess, and Huckle Buckle. We explored the creek and built a massive Lego City. I learned that school agers are harder to please than preschoolers but they are creative and have such enthusiasm for new opportunities to learn. They show confidence, compassion and curiosity. And most importantly I learned how to master a hot seat while tobogganing.
In my second year I became sick. My poor school agers had supply staff and occasional teachers for weeks and months at a time while I was off. I realized how sick I was when I needed to walkie-talkie for someone to cover me for a washroom break. And by the time I came back, (if I even made it in time), I needed to go again. So with tears in my eyes, I told Ana I needed to take a break. I told her I have never been so sick and I don’t know what to do. Her response was, “Don’t worry. We’ll make it work. Take all the time you need.” The next day I was admitted to the hospital for the first time and I was there for 2 weeks. So my school agers made me signs and cards sending well wishes but showed resilience and understanding while facing the inconsistency. And this is when I first experienced a warm welcome back. I was always greeted by hugs and smiles, concern and worry, high-fives and fist pumps.
And then came my third year. My toddlers. My babies. My Dream Team. I learned about colours, frogs, babies, construction, airplanes, food and hot air balloons. I learned to keep it together while facing boogers, diapers and yogurt day. I learned that boxes can be made into boats, houses, pizza ovens or beast caves. We painted feet, drove scooters, took care of our pets, played in slime and made giant bubbles. I learned about diaper cream, which in fact came in handy for my own use in my most recent recovery. I learned about cuddles, kisses, giggles, first words and absolute wonder with the world around us. And most importantly, I learned the lyrics to Shake Your Sillies Out.
These babies also dealt with my sick leaves but again, greeted me with hugs and slobbery kisses upon every return. They made scribbly pictures and handprint cards and provided dandelions or tiny sequins as little signature presents that meant the world coming from tiny humans.
When you work a full time job but are chronically ill, it takes a special kind of workplace to accommodate you. But when your work becomes your home, somehow we just dealt with it. As a team we made it through every leave of absence (for me there were 7), every sick day, every leak, every meltdown and every return. Somehow we made it through laughing while I pulled my hair out (literally) or shit my pants (literally) or potty trained (literally). But I assure you, without this particular group of women at Mazo, it may have been a different story.
To my families: thank you for letting me into your lives. Thank you for allowing me to take a small role in the care of your little humans who hold such a special place in my heart. Thank you for understanding my absences, my fatigue, my scatter-brain. Thank you asking me how I am, for checking in, for asking questions and for showing you care. Thank you for supporting me, encouraging me, and being some of my biggest fans.
To my colleagues, my friends: thank you for teaching me and showing me what it means to be an outstanding educator. Thank you for being my role models and mentors. Thank you for covering for me, picking up my slack (and all of my belongings), or having my back. Thank you for making me care packages, sending cards, visiting in the hospital, and for pizza parties. Thank you for texting me, calling me, sending photos and keeping me updated on those tiny humans. Thank you for being colleagues who turned into friends who turned into family.
Being an ECE is hard. I admire each and every one of you. You come to work with baggage I can’t imagine dealing with, yet put on smiles and sing songs and put your lives on the back burner while you make Mazo the happiest place in the world. Please, continue to take care of yourselves first so you can continue taking care of my Mazo babies. Please, remember to enjoy the sunshine and butterflies and flowers during the summer so when it comes time to deal with snow suits and -30 windchills you’ll still come in with that same positivity ready to make snow men and walk to the North Pole.
To the YMCA in general: Thank you for being an organization that is accommodating, understanding and cooperative. Thank you for taking as much pride in building healthy employees that you do in building healthy communities. Thank you for working with me so I could return for a full 3 years rather than telling me to take a hike. Thank you for teaching me, developing me, and empowering me. And thank you for supporting me in my decision to leave Mazo, for a fresh start. A new beginning.
So now for the second time in my life, I don’t exactly know what my future looks like. But I know it’s bright. Mazo taught me to trust the process. To communicate with your workplace, to stay positive and to LET IT GO (queue Frozen). So here goes nothing….my closure may have just happened but my new beginning is just getting started. And I’m certain I can handle it.
I had one of those “but you don’t look sick” moments while out for a friend’s birthday last night as I made small talk with a drink in my hand. Someone asked me how work was going and my response was that it was good, but I’m still on a medical leave for another few weeks. “Medical leave eh?” he responded while eyeing up my drink. A little shocked I didn’t know how to reply before he said, “I’m just joking, just joking,” and the subject was changed….
But before I jump to offence, I can recognize it may look odd that I’m supposed to be recovering yet out celebrating. So I thought I would explain what my typical day looks like. I thought I would offer some insight…
Keep in mind that this is a “typical” day. Not every day, but most.
It usually begins around 3am….
3:00am: Woken up to go to the bathroom. (1) And let me be clear, each “bathroom” break is usually around 10 min. long and I’m in agony as my ass burns. (Just an FYI)
4:30am: Bathroom break (2) (break from my damn sleep).
6:20am: Bathroom break (3)
7:45am: Still awake. Fuck it, I’m getting up. Bathroom. (4)
8:15am: What should I have for breakfast? Since eggs, bread, greasy foods, dairy, sugar and raw foods make my stomach churn this is a daily question I ponder. So oatmeal it is. Every. Damn. Day.
8:20am: I want coffee. I need coffee. I crave coffee. I LOVE coffee….. Tea it is.
8:30am: Settling in on the couch with my tea and oatmeal. Bathroom break (5)
8:40am: Oatmeal is cold. Eat it any….Nope. Bathroom break. (6)
9:00-11:00am: Season 10 of Grey’s Anatomy.
11:15am: I should be productive. Maybe I’ll shower and get dressed. Bathroom break. (7)
12:00pm: What should I have for lunch? Probably should have a salad. But that’s painful. I want pizza. But that’s painful. Could have a sandwich. But then I’ll grumble all afternoon. Cheese and crackers it is. I’ll pay for that later.
12:15-1:15pm : More Greys. Anxiety creeping in.
1:30pm: I should study. Set up my textbook and notebook. Halfway through a paragraph….Bathroom break. (8) Lost my train of thought. Settle back in. Anxiety. Dog wants out. Bathroom break. (9)
4:00pm: Hoping someone comes home from work early. I cannot watch anymore Greys. And I cannot read about HR succession planning anymore. Dog wants out again. Bathroom (10) Mild (and silent) full on anxiety attack.
5:30pm: I debate what to have for dinner. My ass is sore. My stomach is uneasy (damn cheese for lunch) and I don’t have an appetite. But if I wait to eat any later, I’ll be up even more during the night. Rice it is. Anxiety
After 5 days of this, a night out on a Friday to see more than just my family members is extremely appealing. And if I have an opportunity to drink and perhaps have some fun, I’m taking it. Not that I need to explain this to anyone, but I want to. And I assure you that 13 times a day is a LUXURY for me. Normal? No. But nice? Absolutely.
So my dear friend, not that it’s any of your business but that drink had consequences. Between 2am and 7am this morning I was up four times. And I am still guzzling water to make up for the dehydration alcohol causes me. But I had fun last night. So yes, I’m on a medical leave. And I’m going to take another 5 weeks of it….But let me thank you. For BUYING me that drink.
I often write in practice of reflection from my past events. I examine my circumstances and try to analyze and decipher what the universe has thrown my way, and how it has shaped me. And I often get caught in this rut of how robbed I feel of the past two years. Of how my goals and ambition were stripped from me as I was forced to take a step back and solely focus on my health.
But as my next (and hopefully final) surgery draws closer, I feel excited! I feel that motivation creeping back into my life and that drive to make and meet goals is lingering inside of me. And not just goals, but celebrations, new beginnings and health all persistent in that light at the end of the tunnel. Career, independence, travel, education. It’s near.
I feel like the universe has kicked me down so many times and somehow I’ve gotten up thus far. And I’m about to kick its ass. Oh you’re going to give me infection, after surgery, after malnutrition, after blood loss, after inflammation? Oh you’re going to take my hair, my energy, my school, my confidence, my COLON? Well I’m coming back. Watch me.
(I wrote this post a few months ago and forgot to share. But here it is anyways):
What many people don’t realize is that having an ostomy is financially expensive. Since my benefit package was too overwhelming to look at I’ve spent months paying out of pocket only for my Mom to tell me that a portion of my products are covered. But until I submit a claim, I don’t know exactly how much will be taken care of. In the mean time, my bank account dwindles and my decision to have a J-Pouch is reconfirmed with every swipe of the debit card.
One day out of the hospital may have not been the best idea. I spent my birthday curled up on the couch in agony, waiting for the painkillers to kick in. I doubled my dose by the afternoon hoping I would just fall asleep, relieving me of the misery that my stomach was giving me. After eating my special birthday breakfast made by Bella, it seems like the pain and cramping just continued to get worse throughout the day and I was not doing so hot.
I’ve been waiting months to have an appointment at Mount Sinai hospital with the colorectal surgeon as a consult for my next steps. And today was that day. As excited as I was, I left feeling scatter brained and confused burdened with a very emotional decision.