Fed up: Food, fads and facts

After a long break from writing, I’m finally taking the time to go back to my favourite sport of coffee shop hopping. I have been focusing on myself and my career and my health, and now that things have settled I have the opportunity to return to my overly caffeinated weekends and enjoy some lovely me time with a cookie and a book in a strange place.

 

Walking through the Toronto Public Library, I came across a title: The Autoimmune Solution. I pulled it off the shelf and flipped through the grainy pages of a book that had so obviously travelled from kitchen to kitchen. The stale smell of spilt food lingered on its pages as I looked at the pictures of a meal that impossibly claims to cure you of all symptoms. The neighbouring books listed endless diets of how to eat and why to eat it – and I began to reflect on this unusual massive marketing scam.

Dieting has of course been an absolutely essential point of my career and illness. It’s undeniable that certain foods make you feel a certain way. But these books claim that every person consistently has the same reaction to all foods. For a long time I was a victim of these schemes, in fact, I had probably tried every single diet listed in that library until I realized that this is not how the body works. Especially a body that’s differently abled than the rest of the community. How could I be assured that a paleo diet will all of a sudden improve my illness? If my illness requires a tailored set of medication, should my diet not be tailored as well?

The most challenging part of this is the negativity that I receive from people. Everybody wants to label your diet: “Are you paleo? Are you vegan? You can’t say your plant-based if you’re willing to eat that.” And my all-time favourite: “Are you celiac? Will anything actually happen if you eat gluten? Or are you just one of those hipsters trying out a fad diet.” The criticism is endless. It has even gotten to the point that I avoid eating with people that don’t know me well for the fear that I’ll be judged on how I choose to eat.

Unfortunately, this fear is not unfounded as I’m sure many others with dietary restrictions have experienced. I’ve faced criticisms from vegetarians arguing that I’m not ‘a real vegetarian’, meat eaters saying that it’s a stupid choice not to eat meat, I’ve dealt with coworkers criticizing my food portions, friends criticizing my weight and strangers telling me to go eat something because I’m too skinny. All this and caring too much has led to food anxieties of all kinds.

I eat the foods that make me feel good regardless of whether it fits or doesn’t fit in the web of popular diets. And quite frankly what I choose to put in my body is a choice that shouldn’t be criticized or praised by anyone other than myself.

Ironically enough, I’m sitting in a little coffee shop having an almond milk latte beside a couple where boy is criticizing his partner for having a coffee with cream: “You’re not supposed to have cream” he said, to which she replied: “I’ll do what I want and I want”– you go, girl.

It seems like a simple statement – eat the foods that make you feel good, but it took me years to get to a point where I was aware enough that I could follow an untitled and individual diet. I had to clean my diet up from most food and gradually reintroduce things over the course of a few months to finally feel a difference. I’ve learned that I can consume gluten in small quantities, I should avoid dairy like the plague, rice should be consumed only on occasions and fruits are my best friend – except oranges…yuck. Though as like everything else in my life, my body is not stable. I need to change my diet regularly to keep up with myself, and I’m still learning how to do that. I’m learning that generalized diets like The Autoimmune Solution may have helped certain individuals, but it’s unfair to say that it will cure your illness because from my experience a lot of these diets can be more harmful than good.

 

Call Me By Your Name: The Importance of Advocacy

On Monday night, I found myself keeled over trying to make my way home from a shoot. My lower belly was under so much pressure that I couldn’t stand straight. I waddled to the streetcar stop hanging on to the brick walls of the building beside me as the fuzz from my mittens clung onto the bricks as I passed each and every one. I hopped on four blocks from my house a distance I would usually walk but the ten-minute journey would have likely taken close to an hour in my condition as I would be obligated to stop at every park bench on the way.

When I arrived home, I tried everything the Web could suggest to help the pain: Ice, heat, warm almond milk, ginger, turmeric, parsley…. But as the cause and origin were unknown, there wasn’t much I could do to resolve the issue. I had been experiencing abdominal pain for quite some time and had yet to find a diagnosis, but I had never been in a pain crisis quite so severe.

I stood in front of the mirror and noticed my lower abdomen looked as if it had been inflated like a balloon. I was comparable to a woman that was six months pregnant after attending all-you-can-eat sushi. As the pain persisted and going on a third sleepless night, I finally decided to visit the emergency room.

Let’s get one thing straight: I don’t visit the emergency for petty conditions. I believe that the emergency is intended for severe injuries, potentially critical conditions or anything beyond the level of tolerance. I being the latter, unable to withstand the pressure and pain chose to enter the ER early morning on Thursday. I recorded my experience:

Toronto General Hospital

7.51AM – After getting very lost in the hospital basement, I’m finally sitting in the emergency room. I check in and am awaiting triage. I’m the only one currently in the waiting room, but I know this is always deceiving. I’m certain that beyond the triage doors, the beds and rooms are at full occupancy as usual by the appearance of the staff. I’m not sure if I’m entering at the end of a long shift, or amidst the confusion of starting off the day, but the atmosphere is more tense than usual.

8.31AM – I’m always impressed with the speed of the General Hospital. I have passed through triage, where I explained the severity of my pain. I explained that my head was spinning and I was quite nauseated – though I was suspicious that this last part was caused by the lack of sleep – and added that there was a strange tingling around my face and back of my head. I told her about my condition and concern with previous neurological and digestive issues and read off my list of meds. Ten minutes later, I’m back in a waiting area with my paper bracelet.

9.01AM – A gentleman called my name and escorted me to a bed – as I suspected the area is full. They have me placed in a hallway in an overflow bed beside a redheaded sickly looking boy being fed applesauce by a nurse. She is trying to give him his meds while she explains that paramedics will be here shortly to transfer him.

9.21AM – A nurse passed to take my blood (interesting that I haven’t even spoken to anyone about my issues other than the triage nurse) and stated that I would see a doctor within the hour. I suspect that the blood is something routine, or perhaps something more specific to patients with an autoimmune disease so I ask him how often he sees Lupus patients: “All the time” he said. Apparently, people come in with failing organs without any indication of why it’s happening. Some had no prior medical history and took forever to diagnose. At least I’m working with staff familiar with the disease!

10.34AM – Apparently my blood work is normal, the doctor doesn’t think I’m dying, and told me to come back when I am in critical condition. He dropped the report on my bed and walked away without giving me the opportunity to ask questions.

Shocked, I left the emergency room holding the wall for balance and hunched over with pain (apparently I looked so bad that another hospital staff offered to escort me to wherever I was going in a wheelchair). I made my way to the entrance hall and sat on a couch to take a moment to process what just happened.

I pulled the report the doctor composed and through the messy font, under the section describing my condition simply indicated the statement: “unwell”. There was no mention of my abdominal pain or neurological symptoms. As I sat crying, I realized that the doctor discharged me without asking me about my symptoms or even touching me at all.

Is that not the simplest part of diagnostics?

I’m beginning to think that “unwell” referred to a mental state as opposed to a physical one. Of course, my only evidence of this is the fact that I was not actually evaluated by a doctor, and perhaps it is simply my insomnia speaking but the more I’m reading over my notes, the more I realize that my visit was absurd. I was treated like a child trying to get out of a test by claiming that they weren’t feeling well.

I had to call in sick to work for the week as now I wasn’t only disabled but overwhelmed with disappointment. How was the doctor able to claim that I was not critical if he had not run any tests? How could he know there was nothing truly wrong with me by looking at me?

My abdominal is still swollen, and after calling my GP received another blood test and an ultrasound. While in town, I also received my IV medication for Lupus, where I spent the majority of my infusion awkwardly stationed in my armchair, half asleep. I asked the nurse to run an extra bag of saline as I was feeling extremely dehydrated. I’ve been unable to properly eat and drink for the past few days due to the pain. I’d often find myself quite nauseated after one or two bites. The rest of the day seemed eerie. I don’t remember making my way home, but I guess my exhaustion finally kicked in and I slept for nearly 15 hours. When I woke up the dizziness was mostly gone, but my abdomen still raw.

I got a phone call from my doctor that day: While the ultrasound was normal, my blood test showed that my system was not absorbing vitamins. (Interesting that this was not brought up at the hospital if they had run even the simplest of blood tests.) I visited my doctor office to receive them as an intramuscular injection for it to bypass the digestive track altogether. She stated that it was possible that the inflammation in my belly was the cause for my absorption issues, but that there was nothing we could do to determine if the cause was lupus until everything else was ruled out and this process of elimination takes time. Unfortunately, I might be stuck trying to tolerate this for some time longer. The positive element is that after my first B12 injection, the tingling and neurological symptoms seemed to vanish.

I’ve found my tricks that can help distract and dissolve the intensity of the pain, but my mother is coming for a short visit to Toronto to help with some mundane tasks that I have been unable to perform and perhaps advocate for me on my next hospital visit.

When experiencing significant pain, it can be quite challenging to advocate for myself due to my obvious distracted nature. Whether it was lack of persistence or simply the nature of my visit, the doctor didn’t advocate for me when I was in desperate need. This is something I actually commonly experience, and while I don’t like to put a negative light on all hospitals, as some doctors have saved my life, it is due to these unfortunate circumstances that patients can fall into dire emotional situations in addition to their physical disabilities.

I can only continue to insist how meaningful it is to have someone advocate for you, or have someone of sounds mind and body to help you advocate for yourself.

A Canary in a Coal Mine

My mind wakes up with the sun. The beams of sunlight capture the dust in the air and my eyes melt the room into an oil painting as I inhale the fresh air of a new day. I begin to move my toes and fingers, stretching up to my knees and elbows to see how limited I am in movement this morning. I often feel my hips too stiff to move right away so I try to introduce small movements at a time as I try to bring my feet to the floor. I slowly stand and feel the pain escalate from my hips to my knees as I slowly make my way to the bathroom to sit in the burning hot water of my shower. I’ve found this to be the easiest way to wake my body. I can’t explain the science behind the healing effects of water – or perhaps it is just my version of a sugar pill. But, soon after, I can stand up and start to feel my joint awaken and become more limber with movement. Most pain will vanish within an hour, some will linger for weeks, but it’s completely unknown what will be the severity of my symptoms that day.

The issue with having an invisible illness is that while I am all too aware of the severity of my symptoms, there is no physical representation of my pain. When a person breaks there arm or slices their finger on a piece of paper, there is physical evidence of their suffering: we can understand what they are experiencing and offer support and sympathy. But with an invisible illness, we cannot display the severity of our pain except through verbal expression and to someone who has never had a similar experience, claiming that: ‘I’m being electicuted through my body’ is enough to suggest a psychological workup. There is no glaringly obvious physical problem, it is a continuous uphill battle to be heard, and sometimes, even receive proper treatment.

In my second year of university, I began to experience tingling in my fingers and toes. I dismissed it, after all, it was likely just an extended symptom of waking up. The symptoms grew more severe, my body would tense up at every slight movement, I became increasingly dizzy and I felt as if my body was continuously being electrocuted. I was taken to the hospital for emergency examination, and twenty-two hours later, I was sent home with the diagnosis of a migraine. I have experienced migraines in the past, and while I could not recognize this pain as similar, I figured I’d take pain medication and lie down in a dark room, and it would pass.

I returned to the hospital a couple weeks later. I explained that I had been unable to attend school, I couldn’t move without pain, the feeling of electrocution had become so severe that I had resorted to crawling to the bathroom and back to my bed. But, again the doctors dismissed me with a migraine and prescribed me a dose of morphine to aid the pain.

It shocks me how dismissive the doctors were acting and how quickly I could have become addicted to painkillers. I received no tests or procedure to try to diagnose my symptoms, instead, I was continuously told that the symptoms I was experiencing were not consistent with anything they recognized, therefore were impossible and they continuously sent me home.

At this point I was practically living with friends as I required around the clock care: I needed help feeding myself, bathing, and even getting to the bathroom. I was no longer attending classes and failing the majority as I could not obtain enough doctors notes excusing me from class. As time went on, my friends could only visit on rare occasions as they had other obligations and my mental health was quickly deteriorating. I wanted to enjoy the sunshine, I wanted to read my books and attend my courses and enjoy time with my friends but I was retrained in an anatomical prison.

After two months, my symptoms had become so severe that I was practically paralyzed in my bed. My sheets were unwashed, my hair had been permanently placed in a bun on the top of my head and my skin had become so dry and brittle that moving my fingers would be excruciating. I would call my mother crying, trying to comfort myself while trying not worry her too much (because apparently it was just a migraine). But, my voice must have revealed the extent of my suffering because I woke up the next morning to my mother, who had driven the five hours over night, to provide me with emergency care. She helped me to the car, and lay me down on the seat where I immediately burst into tears. I cried most of the way home.

She immediately brought me to our local hospital. As I was in such a terrible state I was unable to advocate for myself, she raged at the doctors and ensured I would not be leaving without a proper diagnosis. They admitted me to the urgent care unit and introduced me to various specialist. I was quickly directed to an MRI where they discovered that I had myelitis. The doctors explained to us that my spinal cord was severely inflamed in my upper spine and neck and that I would require immediate medical intervention. I was place on three days of I.V. Cortisone to reduce the immediate inflammation followed by six month of a high oral dose. I was then continuously followed up by a neurologist as my lupus had begun to affect my neurological system.

I was able to return to school within a week and by some miracle recovered my grades in four of my five courses. Things were ‘normal’ again, I would enjoy time with friends and spend days at the library and was finally able to walk. It’s shocking how many mundane tasks I had not appreciated until my ability to perform them vanished. Simple things like showering feels like the most soothing luxury to me now.

I still experience quite a few neurological symptoms of Lupus, I’ve struggled with sudden vision loss and sudden hearing loss neither of which have been treated to this day. I am continuously receiving the excuse that I am aging and that vision and hearing loss are a typical result of that. Perhaps this is how it feels have passed the age of 20. But, I continue to advocate for myself and I continue to rely on the support of those closest to me to help me through tough phases. I can’t imagine how difficult it must have been for those around me to advocate for nothing but my personal testimony but it very well may have been a blind faith that saved my life.

Photographed by Tavo Arana Photography

On Being Ill: The Art of Misdiagnosis

I was first diagnosed with Systemic Lupus Erythematosus (SLE) at the age of twelve. My mother sat next to me in the doctor’s office when we finally received the diagnosis. It was as if I had been drowning for years and my lungs had forgotten how much they loved the taste of air: I could finally breathe.

SLE is a disease that causes the body’s immune system to mistakenly attack healthy tissue. Symptoms can be so diverse that the disease is incredibly challenging to diagnose. While I can never be certain which symptoms related to my illness, I suffered from gastrointestinal issues, joint pains, unusual rashes, and neurological issues my entire childhood. I had seen more specialists than most people will see in their lifetime and underwent a variety of different procedures whereby most were inconclusive. I only had my symptoms which were oftentimes invisible to those around me.

And then, I was referred to a psychiatrist to evaluate my mental state: ‘she has pediatric depression’, they told my parents and claimed that I was creating injuries for attention but there was absolutely nothing physically wrong. A second psychiatrist stated I was psychosomatic, whereby a mental factor such as anxiety or depression causes a physical illness.

I was too naïve to be depressed and had never really concerned myself with any business that caused any kind of harm but I would convince myself that maybe I was ill. I didn’t want to simply reject the diagnosis of the psychiatrists, so I began to think that maybe I was so mentally ill, that I myself couldn’t even recognize it. It didn’t feel true, but the truth is often counterintuitive and so I had to believe that he was right.

As years passed by, my symptoms only increased in severity. By my eleventh year, I had already been receiving treatment for a stomach ulcer; I had to avidly avoid the sun as I would break into painful rashes all over my skin; my fingers and hands had swollen to triple their size at the joints, and my right elbow had locked and permanently folded. I would be dreading gym class as I would be pushed and tested on the level of pain I could only attempt to tolerate.

I can only continue to be thankful for my parents and the doctors who persisted in achieving my final diagnosis. It wasn’t until a blood test performed by my GI, had returned with a positive ANA that I was reassigned to a rheumatologist who had seen my symptoms before in other patients.

And for the first time, I wasn’t crazy.

Within a few days, I began to receive treatments to maintain my illness. My elbow was treated for rheumatoid arthritis with cortisol injections in my joint and my other symptoms began to vanish with the help of steroid creams and prednisone.

It’s striking to me now how difficult it was to be taken seriously, but in fact, 45% of patients who are eventually diagnosed with a recognized autoimmune disease are originally diagnosed with a psychological disorder. (Brea, 2017) Through the years, I have had doctors dismiss my disease claiming that SLE is a term that states: ‘we don’t know what you have’. I have had people claim that I am constantly seeking attention by claiming symptoms of this invisible illness.

I have been dismissed so often, that I no longer discuss my disease.

With this blog, I’m going to create a community to learn about invisible illness and how it can affect so many people on a day to day basis or else I want to reach out to those who suffer in silence for reasons such as this. While some posts will focus on being ill, I also look forward to sharing my modelling career and some of the incredible artists I have had the opportunity to work with.

Thank you so much for taking interest in my story!

Photographed by Tavo Arana Photography

References:

Brea, J. (Director & Producer). (2017) Unrest [Documentary]