Saturday, May 17, 2014

Diabetes Snapshots

Note: Today's theme for Diabetes Blog Week is diabetes snapshots—to grab a camera and share what life with diabetes is like through photographs.

What does daily life with Type 1 diabetes look like?

Close-up of a test strip sucking blood off a finger.
It looks like testing blood sugar eight to ten times every day (and night).

Close-up of the nutritional label on a packag of food.
It looks like calculating every gram of food eaten for every meal and snack.

Close-up of insulin pump tubing.
It looks like being connected to a life-sustaining medical device around the clock.

Close-up of an insuion pump infusion set with a sharps container in the background.
It looks like countless needle pokes for infusion sets, injections, and blood draws.

Close-up of to boxes of insulin with a pharmacy label.
 It looks like cupboards and fridges filled with boxes of prescriptions.

Close up of insulin pen with needle attacked and Ketostix in the background.
It looks like ketone sticks and insulin pens for incidents of high blood sugar.

Close-up of an open tube of glucose tablets with tablets spilling out and book spines in the background.
It looks like glucose tablets stashed everywhere for incidents of low blood sugar.

Close-up of an an open glucagon emergency glucagon kit showing a vial of glucagon and a syringe.
It looks like always being prepared for an emergency situation.

Table with discarded insulin pump supplies scattered on its surface.
It looks like piles of medical waste created every couple of days.

Close-up of a graph on a glucose meter showing three days of widely varying blood sugar levels.
It looks like the chaos created when trying to imitate a functioning pancreas.

Close-up of a glucose meter showing a reading of 5.4 mmol/L.
 But sometimes, when everything falls into place, it looks like perfection.

Friday, May 16, 2014

Diabetes Lifehacks

Note: The theme for today's Diabetes Blog Week is lifehacks—the little, creative things we all do each day to make managing diabetes easier.

Ah, I love lifehacks. I used to just do everything status quo with diabetes, but in the past few years I've begun to get creative with my diabetes equipment and routines so that it makes things as easy for me as possible. Here is some of what I do.

Weights and Measures
 
I weigh almost everything I eat. I used to use measuring cups, but then I discovered carbohydrate factors (a la Pumping Insulin)—basically the percentage of food that is made up of carbohydrates. This way I only have to remember one number, and I can serve food normally rather than having to use measuring cups (and then wash them afterward). So, when I want to eat fruit and yogurt, I can easily remember that the carbohydrate factor for my fruit is 0.10, and for my coconut yogurt (I'm allergic to dairy) is 0.15. I put my bowl on top of my scale, tare to zero (to get rid of the weight of the bowl), serve the yogurt, tare again, serve the fruit, and then multiply the weigh of the yogurt by 0.15 and the weight of the fruit by 0.10, and get a carbohydrate count by adding the two together.

It sounds more complicated than it is, especially once you get used to it. And, for foods I eat less often, I simply write the carbohydrate factor on the package so that I can instantly get to it. You can learn more about carbohydrate factors in Pumping Insulin by John Walsh or from this article in Diabetes Self-Management. The other advantage is that this is a very exact method of measuring carbohydrates (since there is no air between bits of food as can happen with a measuring cup) and takes very little extra time (and trust me, I'm not a math person!).

For travel I also have a pocket-sized scale that I bought several years ago. It's smaller than a cell phone and allows me to weigh foods that I haven't pre-measured, such as fruit I purchase or other items not in a package. I keep this in my purse, as well as bringing it on longer out-of-town trips.

Out and About
 
Since I live with food allergies in addition to diabetes, I pack virtually all my own meals. (When I do eat out, it's almost always limited to chicken salad with vinegarette dressing.) This includes packing all meals for extended trips. For work lunches and other meals I use an insulated lunch kit that has a mesh pocket on the lid where I place an ice pack. For business trips and vacations, I have a larger insulated cooler which I put inside a hard-shell suitcase to minimize squashing of food (for Canada only, since you can't take produce or meat across the border).

To make things as easy as possible, I measure as many foods as I can as I'm packing. I put them into individual servings in various sizes of Ziploc bags (which I try to reuse as much as possible if the foods are dry) and then write the carbohydrate count on a piece of masking tape with a felt tip pen, which I then stick to the bag. Due to my low vision, I can't read the writing if I write directly on the clear bag, and even though I've seen special labels that you can buy to write carbohydrate counts on, masking tape is super cheap and I've never had a piece fall off.

Cases and Bags
 
When I first got my Animas pump I immediately hated the case. It was enormous and bulky and, because it had hard plastic casings for the meter and strips, it couldn't be used for anything other than holding meter kit. I happened to find a case for an Accu-Chek Aviva somewhere and found that it fit my meter and lacing device perfectly. Speaking of lacing devices: I never use the one that comes with the meter. I use the Accu-Chek Multiclix, which is particularly nice since it doesn't have any sharps to worry about and makes changing lancets really easy (I've never changed lancets so often!).

In my purse I always carry backup supplies in case of pump issues. I keep an infusion set, cartridge, and alcohol swabs in a portable hard drive case, which fits these supplies almost perfectly. I have a tiny case from Case Logic (which I think is meant for SD cards) where I keep quarters, extra pump and meter batteries, pen needles, and some pills like antihistamines and painkillers. I keep both these cases, as well as an insulin pen (with insulin) and an EpiPen in a pocket in my purse or whatever type of bag I'm carrying, so that it's all easily accessible in one place.

Sharps Disposal
 
I've put an individual key ring on the zipper in my meter case, which makes the mesh pocket (which I use for temporary test strip disposal) extremely easy to find and open by hooking a finger through and pulling; this is especially helpful when low!

When I travel on extended trips, I use a large Tic Tac container as a temporary sharps disposal container until I can get home and put the sharps in my "official" sharps container I get from the pharmacy. I have tried the needle clippers but found that it could not clip through infusion set needles.

Business Trips and Vacations
 
For extended trips, I have both the Dia-Pak Deluxe and the Dia-Pak Classic. I use the Dia-Pak Deluxe to hold about a week of diabetes supplies when I travel out of town. I use the Dia-Pak Classic to hold all of my allergy medications (yeah, I really do need a whole separate case). I bought these two cases specifically because they come in bright blue. After an experience of having an airport security agent remove pump supplies from my pack and not repacking them, I wanted something that would be visible not only to airport security but also to me if it was left on the conveyor.

Exercise
 
I recently bought a Double-Pocket SPIbelt for going for walks or to other forms of exercise where I don't want to carry a bag. It has two pockets, one where I can put glucose tablets and an inhaler, and one where I can put my cell phone, keys, earbuds, and a small glucose meter (like the Accu-Chek Nano). When I go to the gym, I use a MEC Sling Pack to pack a towel, folding cane, and anything else i want to keep nearby (I don't wear the pack, I just hang it off the equipment I'm using).

One form of exercise I greatly enjoy is swimming. I haven't yet found a great solution for keeping supplies nearby (and dry) on the pool deck. At the moment I tend to just put my white cane, glucose tablets, and inhaler on a bench on the pool deck, but I'd like a case I could put them in (ideally that would also fit a swimming-friendly glucose meter like the Accu-Chek Active) that doesn't look like a wallet or digital camera that might get stolen. I am open to suggestions!

I am sure there are countless other little things I have done to make daily life with this time-consuming disease easier. The above are the things that I've implemented recently enough that they pop out at me.

Thursday, May 15, 2014

This Too Shall Pass

Note: The theme for Thursday's Diabetes Blog Week is mantras and morewhat gets us through a hard diabetes day.

I used to be very worried about forever.

When I first took the reins on diabetes and tried for the first time to wrestle it into control on my own (without my parents, who had managed diabetes throughout childhood), I was very concerned about numbers. And I was very concerned about forever.

I would sit thinking about how I was only 24 but had already had diabetes for 15 years. And I would think about all the statistics that said that 90% of people with Type 1 had some complications after 15 years. And how I must be really lucky to be in the 10% that didn't yet have complications. And how my time must be coming up sooner or later.

And I would think about the people who were living with diabetes for 50 years. And how, after 50 years of diabetes, I would only be 59 years old—probably not even retired! And how, if I lived until I was in my late 80s, I would have diabetes for over 75 years.

And I wondered how anyone could possibly manage this disease for 50 or 75 years.

I would think of how many times my skin had been pierced to keep me alive. The thousands of insulin injections, tens of thousands of finger pokes. More than five dozen blood draws. Half a dozen emergency situations. Countless highs and lows.

It was overwhelming. How could anyone possibly do this all day, every day, forever?

The one day I was looking at quotes (sometimes I do occasionally when I'm bored) and came across the quote, "This, too, shall pass."

I immediately thought about diabetes. I immediately loved it. So much so that I put it on my pump's home screen.


I have since switched to a pump that does not allow customized messages on its home screen. But, even since putting that mantra there, I have always tried to keep it in mind. Every time I see a high or low reading, every time I feel frustrated or helpless, I remind myself that, eventually, the high or low or other circumstance will pass.

Diabetes may never pass for me, but that one moment or hour or day or week will. These days I try to take things one reading at a time. If it's high or low I deal with it, without worrying about where the next reading will land. I do, of course, try to anticipate blood sugar in terms of planning for things like exercise and travel. But I no longer begin the day wondering how I'm going to manage for the next 50 years—managing for the next hour is sometimes hard enough.

Wednesday, May 14, 2014

On Blogging and Emotions

Note: Wednesday's theme for Diabetes Blog Week is "What brings you down?"—the emotional issues in diabetes management and the tools that help us cope.

I stare at the screen, the words blurring in front of my eyes, and take in the lines upon lines of text. Each line began with the words "I'm sick of ..." and spelled out an aspect of diabetes that I hated. I sit slumped, sad and exhausted. I'd had a LiveJournal account for over a year, but until now I had used it simply for mindless memes and a log of daily events rather than as a true journal. I click POST, wondering as I do so what those on my friends list will think.

It was early 2005, before the blogosphere or the diabetes online community had really started. The idea of writing one's thoughts and publishing them to the internet was still a relatively new concept to many people. I had kept a private journal for the previous 10 years, and I knew from past experience that writing out my thoughts, emotions, and worries often made me feel better. But only to myself. I steered clear of sharing negative thoughts and emotions with people, even close friends and family. I would let emotions eat at me before I would let them loose.

But in 2004 I was struggling. I was in university, living on campus. My close on-campus friends had graduated, and because I had a guide dog I was housed in the residence for graduate students. This left me feeling out of place and alone. None of my professors or fellow undergraduate students knew that I had diabetes. I had recently begun devouring any autobiography by a person with diabetes that I could find, and was disheartened to discover that every one of them ended with complications. I knew that, with several years of A1c results hovering around 8.5%, my diabetes was not well controlled. I felt constantly exhausted, struggling to stay awake during classes and commutes. I saw high readings daily, even though I prepared most of my own food instead of eating in the residence cafeteria. Several times I missed classes because my blood sugar was so high and I felt so sick to my stomach (ketones did not even cross my mind at the time) or because I was so low that I slept through my alarm. I was conflicted about whether I wanted to go into teachingand whether I could be an effective teacher as someone with a visual impairmentwhich just added to my overall melancholy.

I knew that something had to change. Yet, although I had lived with diabetes for well over a decade at that point, I had never dealt with diabetes at an emotional level.

All that ended one evening, in a flood of keystrokes and tears.

It happened after a particularly bad diabetes day. I had struggled with keeping my blood sugar in range throughout the day, despite doing everything right. The final straw came when I prepared meticulously for some exercise—reducing insulin at the meal prior, eating beforehand, testing several times in the hour leading up to make sure my blood sugar was on track—only to arrive and find that the goalball practice I'd planned to participate in was cancelled. I left with high blood sugar and several wasted hours. As soon as I got home I logged onto LiveJournal and let more than ten years' worth of anger, frustration, sadness, fear, and uncertainty out in one massive, tear-streaked post.

Screenshot containing a snippet of the text I posted on LiveJournal.

I am forever grateful to the friends—many of whom I am still in contact with today (many of whom have moved from online screen names and avatars to "real life" friends)—for reading the weeks of written turmoil that followed and for their flood of support and encouragement, even though none of them had diabetes themselves. But by the end of the torrent of emotions I knew I had the unflinching support of friends, I had worked out some ideas and a plan for improving my diabetes control, andat the suggestion of a close "real life" friend who followed my postsI had sought out and made tentative contact with the fledgling diabetes online community.

I think with diabetes we often try to bury the negative emotions. We make  jokes about lazy beta cells and low blood sugar incidents, laugh at sometimes serious mistakes, and live life with our family and friends as if diabetes were simply an inconvenience, like having to floss each night. It's only when a crisis hits or is narrowly averted that we pause and allow ourselves to feel frustrated, scared, sad, or angry at having this disease. And, yes, I am guilty of suppressing the negative emotions—I have to, we all have to, or else we would not be able to cope.

There are people out there who claim that being diagnosed with diabetes is the best thing that ever happened to them. They have achieved excellent control, excellent fitness, and are meeting all of their diabetes care goals. I am not one of those people. I struggle with highs and lows daily, despite my best efforts. There was a time when I was striving my hardest and failing to reach goals, when I got incredibly frustrated and felt intense emotions with each blood sugar reading and each A1c result. It led to nothing but stress and burnout, and so I have tried to disassociate blood sugar and A1c results from emotions. It is not good riding an emotional rollercoaster in addition to a blood sugar one.

I still experience negative emotions about diabetes on an almost daily basis. I feel angry when I do something to cause my blood sugar to spike. I feel frustrated during a day of high readings that won't come down despite repeated corrections. I feel scared after a night interrupted by a severe low. I feel sad whenever I hear of another child being diagnosed with Type 1 diabetes. When these emotions come I allow myself to feel them—to spend a day being scared, or to write a post venting some fear, or even to tell a close friend that I'm having a frustrating diabetes day. And once I do that, I move on. I have not had such an outpouring of powerful, negative emotions since that post nearly ten years ago.

In a way, my LiveJournal account was my first blog, although the entries were more raw and unedited than true blog posts, and most were only semi-public. I am still relatively private about my emotions surrounding diabetes, but less so today than I was ten years ago. I still keep a private journal, and still find it a tremendous tool for working through emotions. The wonderful thing about blogging, though, is that it is public enough to feel as if you are shouting to the world, but private enough that your real-life friends and family are not likely to find it amongst the billions of websites out there. It provides a unique avenue for expressing sometimes negative feelings, or just venting, and having people who understand completely read and provide support (sometimes just knowing another person is reading is support enough) without the need to walk around in everyday life suppressing an avalanche of fear, frustration, anger, and sadness. Having such an opportunity has been of huge benefit to me in this diabetes journey, which is as much emotional as it is physical.

Tuesday, May 13, 2014

Haibun

Note: Poetry is Tuesday's theme for Diabetes Blog Week. I thought I'd try my hand at a style of Japanese poetry that is new to me as of yesterday, called a haibun, which combines a short piece of prose with a haiku.

Type 1

A word, so sharp and new it hurts our ears, floats through the air above us. A day, scattered like fall leaves blown across the lawn, their direction unyielding yet aimless. White walls splashed with colour, thin curtains on squared rails, a smell both soft and sterile. Strangers, carrying kindness and smiles.

Children dash, laughing, falling in the snow, rolling, rising once more to run. Snowflakes dapple their faces like sun, candy melting on warm tongues. Bright clothing against a palette of white, sculpting pictures on the landscape. The world is not large enough for our playground, painting streaks of colour as we play.

Something lurks inside—
coiled in a tiny bead of red;
it can’t be outrun.

Monday, May 12, 2014

Change the World

Note: This is my first time participating in Diabetes Blog Week. This is my post for Monday's theme: Change the World.
ocularcentrism (noun):
(1) The privileging of vision over the other senses.
For several years now I have been at once fascinated and dismayed at how everything in our modern world revolves around vision. Nearly every appliance, computer, service, or policy seems to be designed with the assumption that the consumer of such goods or services will have near-perfect vision.

Just think of shopping—something every one of us has to do on at least a weekly basis. Have you ever considered how much you rely on your vision in a supermarket? Everything from the signs informing you of which foods are in which aisles, the price tags, the 50% off sale tags, and of course the items on the shelves themselves, assume that the consumer will have vision sufficient to see and read all this information. The movement inside a grocery store is often chaotic—unlike roads, there is no controlled traffic flow. Carts get tangled in intersections, people come to abrupt halts when they see an item of interest, and carts are left unattended in the middle of aisles while their driver dashes off to get some forgotten ingredient. And then there's the checkouts. A little more organized in terms of movement, perhaps. But everything from the number of the checkout to the price that flashes up on the cash register to the point of sales device you use to enter your PIN is inaccessible. And that's assuming there's a person behind the counter, not the text-heavy, touchscreen-interfaced world of self-service checkouts.

This is just one example of one weekly chore. I could go on for pages about all the tasks we engage in on a daily basis that are based on the assumption that we can see or that vision is the only way of completing a task. Some are more accessible than others, of course. You don't necessarily need to see the readout on an oven's LCD display to cook a gourmet meal, as long as the controls on the oven are accessible. But it's no wonder that people are frozen by fear at the prospect of losing their vision!

Like the tasks in our everyday lives, there are a wide variety of chronic illnesses out there. Each requires its own regimen of treatments and therapies. And, like grocery shopping compared to preparing a meal, some are more accessible than others. A condition that entails little more than popping a pill each morning is going to be more accessible than a multi-faceted, complex condition like diabetes. Most other chronic illnesses, however, are not leading causes of vision loss worldwide. And I would have hoped, just maybe, that diabetes would take the lead in accessible healthcare. Because today, right now, there is precious little in the way of accessible healthcare, and even less in the way of accessible diabetes care.

I'm not just talking about technology. Glucose meters and insulin pumps and continuous glucose monitors are certainly staples of diabetes care, particularly for those of us with Type 1 diabetes, and it is true that these devices have a long way to go. Today people with diabetes are demanding features, style, and choice in the diabetes products they buy. But if you happen to be someone who needs accessible diabetes equipment, you have a choice of two fully accessible talking glucose meters, a choice of zero accessible insulin pumps, and a choice of zero accessible CGMs. Not exactly setting a standard, particularly when you consider that there are numerous talking blood pressure monitors, thermometers, and scales out there to choose from.

But, no, I'm not just talking about technology. The entire world of diabetes care is extremely dependent on vision, largely leaving behind the nearly 1 in 5* people past middle age who have both diabetes and a visual impairment. For me, growing up with a visual impairment, it started right when I was diagnosed with Type 1 diabetes. Within days, it was apparent that I had difficulty getting the drop of blood on the test strip—using strips that, in the early '90s, didn't suck up blood, couldn't be touched, and required a "hanging drop" of blood to be placed squarely on a target area. Then, when I was a teenager and taking on more responsibilities with diabetes care, I was unable to measure insulin into a syringe even with a special syringe magnifier. As an adult, it was my adventures in getting an insulin pump that forced me to find work-arounds to inaccessible equipment yet again. Insulin vials are designated by colour, not by shape or tactile features. The same is true of insulin pens (which, thankfully, do click as units are measured—one of the truly accessible parts of diabetes care). There are dozens of books out there about diabetes, most of which are not available in alternate formats such as braille or audio (or, if they are, have all the helpful graphs and charts omitted). Even carbohydrate counting is challenging, having to read tiny labels off packages of foods. Most diabetes management software is not accessible, including most mobile apps, even though the platforms they run on include accessibility features. And even diabetes education faces challenges as it is more often delivered online using inaccessible software platforms.

But it doesn't have to be this way. The key in my discussion of all of these issues is that the root of the problem is the assumption that customers and participants will have good visual acuity, even in the face of the fact that this disease (and aging in general) is a leading cause of impaired vision. And a big reason for this assumption is that people simply don't think about it until it affects them or someone they love. I can't blame them for that. Many of us never thought about diabetes until it barged into our lives. But this is my cause, this is my passion—to make people aware of and think about accessibility issues surrounding diabetes.

This is not my only area of advocacy, but as something that affects me and about 4 million other people in North America,* it's a cause I chip at a little each day. I write e-mails to companies when I hear about the next great pump (the Cellnovo, for example) asking if it will include accessibility features and offering to help in any way that I can. I take part in as many product surveys as I can, always making sure to mention accessibility as a major feature concern of mine. I speak to product representatives at conferences about the challenges (or impossibility) of using their product with little to no vision and possible solutions. I bring accessibility up in forums and blogs, often with a bunch of barriers thrown back at me about why designing an accessible pump or CGM wouldn't be possible—cost, aesthetic, functionality, technology, and so on.

It's easy to think of barriers. What I want to think of, and hope others will think of, are solutions. If I spent my life thinking of barriers I would go nowhere. I've lived my entire life thinking of solutions, and I want more than anything for the companies who manufacture diabetes products and provide diabetes services—and for the diabetes community who use those products and services—to shift their thinking in the same direction. I realize for many who are not familiar with accessible technologies it may be difficult to picture how some of these things could be accessible. So let me give some examples of possible solutions.

Picture a glucose meter that had a setting to enable a speech output feature, which would otherwise not interfere with the functionality of the device at all (like iOS devices). Picture an insulin pump with a meter-remote or PDM where consumers had a choice of whether to purchase a standard unit or one with a user interface designed specifically to be accessible. Imagine a CGM that used sound cues to render a trend graph on a musical scale and a series of ascending or descending tones to indicate arrow direction and intensity after announcing a blood sugar reading. Imagine diabetes publications were made available in fully accessible electronic copies at the same time they were published in print—including all tables, graphs, and pictures being accessible. Imagine all food packages, everywhere, had tiny bar codes that contained the nutritional information and ingredients and could be scanned and read aloud by an app on a smartphone. Imagine the breakthrough products of tomorrow—which are being developed today, as you read this—had accessibility considered as a top consideration as the product was designed from the ground up.

Imagine I and others with impaired vision could await the release of the artificial pancreas with boundless enthusiasm, rather than wondering whether it will be a tool we will be able to access and use safely and effectively.

The issue of accessibility, of course, encompasses a far wider field than simply diabetes. In order to deliver accessible online diabetes learning, the platform on which the content is delivered has to be accessible. In order to have an accessible insulin pump, the cost needs to be reasonable. In order to have an accessible nutritional database linked through bar codes and a mobile app, food companies need to be on board. Yet, accessible products and services do exist in other areas of life, but diabetes is lagging seriously behind. The most important factor is that in order for any of this to even be imagined, it has to be in demand. And currently, there is no demand. There is no outspoken disability cohort of the diabetes online community, as there is with parents and people with LADA and athletes with diabetes. There is no one writing letters and e-mails, flooding companies with questions and requests for accessibility. For the most part, championing accessibility in the diabetes arena is a very lonely battle.

Perhaps I am just ahead of my time. I realize that many of the solutions I've brainstormed here (and they really are just brainstorms—I'm no engineer) rely heavily on the advent of technologies such as the explosion in mobile apps and services. But there is a trend in accessible devices: they tend to be one or two generations behind the most recent devices, so that by the time there's an accessible insulin pump we will have moved on to something newer and better and, like the pumps of old, just as inaccessible, albeit in a novel and different way.

I realize that I live in, and will always live in, a sighted world. Those of us with visual impairments will always be the minority, and we will always have to find ways to cope and adapt in a world that wasn't designed for us. I hope, though, that someday I will live in a world where at least one product of each type is accessible. I'm not asking for a selection of 20 glucose meters or 5 insulin pumps to choose from; even just one would be a great stride in the right direction. First, companies need to decide that they are willing to design a product from the ground up with the idea that, just possibly, 20%* of their users will have impaired vision—and that those customers are just as important as the other 80% with near-perfect vision. And, for that, there needs to be a much louder voice than there currently is.

* Statistics from the American Foundation for the Blind.

Sunday, May 11, 2014

To My Mother

Thank you for making me who I am today.

Thank you for always supporting me, no matter how big the crisis or small the worry. For always sharing your wisdom, your thoughts, your guidance. For being one of the truly safe people—one of the few people I turn to when I am at my most vulnerable, who somehow always makes me feel better by the end of the conversation. Thank you for offering me a childhood filled with laughter, family, safety, and love.

Thank you for making more sacrifices than I will ever know. For advocating on my behalf before I knew what advocacy meant. For shielding me from the words “you can’t” for as long as you possibly could—and never speaking these words to me in my presence. For defending me, without my knowledge, when others said I couldn’t. It is because of you that, even though I knew I was different, I never felt that my disability limited my life choices.

Thank you for never, ever letting me use my disability as an excuse. For never letting me quit even when I wanted to. For making me pick up my own mess even when it made you look mean to onlookers. For insisting that I take responsibility for my own needs and face the consequences of my mistakes. Thank you for never over-protecting me, and for letting me take risks even when you were too scared to watch.

Thank you for raising a daughter with “special needs” who was always just a daughter. For your support in challenges I faced from the time I was born through childhood. For the unwavering support you still offer for challenges I’m facing today. For never allowing any of those challenges to define or limit me. Thank you instilling in me the belief that I may have to do things differently, but that I can do anything and everything.

I owe everything I am today to you. My perseverance and work ethic, the knowledge to learn from mistakes, my outlook and attitude, the ability to take risks, my sense of self, my achievements and successes. I would not be where I am today without you (and Dad). I could not have asked for a better mom in the entire world—who faced the challenges of raising a “special needs” child head-on, with resounding success.

Thank you for everything you have done and will do as my mother. Words cannot express how grateful I am.

Thursday, May 8, 2014

Eosinophilic Esophagitis

It started one ordinary lunch break in the spring of 2008.
Sitting with colleagues, I dug into the plate of rice and chicken I'd just ordered—a bad habit I'd slipped into lately, instead of packing my own lunch. The discussion around me involved hockey playoffs, and not knowing much about hockey compared to the others at the table, I kept quiet, content to listen.

Not two bites into my meal I felt something lodge in my throat. I attempted to swallow several times, and when it wouldn't budge a small stab of fear jabbed at my stomach. I took a sip of water and found I couldn't even swallow the liquid. The conversation around me faded. I could still breathe without difficulty, but my esophagus seemed completely blocked. Grabbing my phone, I bolted for the staff washroom. I grabbed a paper cup from the dispenser and tried several gulps of water, which did nothing but come right back up, causing me to come dangerously close to inhaling the liquid.

Hearing someone enter the bathroom, I ducked into the stall, listening until they finally left. When they did, I stood shaking, trying to think of what to do. I had no idea what was going on. The only reasonable assumption I could think of based on my past experience was that I was having an allergic reaction; but I had never experienced my throat becoming completely blocked, and wasn't having any other symptoms of a reaction.

I punched my parents' number into my phone. After the first ring, I hung up. I desperately wanted help, but they were at work and, even if they happened to be home and answered, wouldn't be able to help me from afar.

After fifteen minutes I made my way unsteadily back to the table where my co-workers sat. One asked with concern if I was all right, and I answered in a shaky voice that I didn't know what was happening but that I couldn't swallow food or water.

Everything stopped. Suddenly, everyone's attention was on me. Everyone at the table thought that I should go to campus security where there was a first aid attendant. I agreed, and a fellow instructor walked with me out of the cafeteria and down the hall to security.

"How do you feel about 911?" the security guard asked after I explained the situation, his fingers poised above the keypad and the receiver already in his hand. I could hardly believe this was happening.

"I'd rather not ..." I said, knowing even as I said it that it was probably the wrong decision. "Not unless I have to."

The guard was, understandably, concerned that if I was having an allergic reaction my airway might close off next. But aside from not being able to swallow, I didn't feel like I was having a reaction. I told the guard that I would let him know if it worsened, and returned to the lunch table, where I sat talking, trying to distract myself, periodically trying to swallow. As the lunch break came to an end—at this point I had been unable to swallow for over an hour—I suddenly felt like my throat was getting worse. I stood up suddenly. "It's getting worse. I'm going to go tell them to call 911," I announced. Murmurs of agreement swept around the table, and a colleague stood to walk me back over to security.

And then, on the way out of the cafeteria, the blockage disappeared as suddenly as it had come. I returned to the table and took a tentative sip of water. It went down without so much as a splutter.

Later that afternoon I visited a doctor on campus, who agreed with me that the symptoms didn't entirely match those of a severe allergic reaction. He advised that, if it happened again, I should go to emergency.

That was the first instance of food impaction, but not the last. Several months later it happened again as I ate dinner in my apartment. I called my mom, and she was on her way over to drive me to the hospital when the obstruction once again cleared with the help of large amounts of water. Instead of the hospital I went to a walk-in clinic, where I was advised once again to go to emergency if it happened again, and tests were ordered, all of which came back normal.

For about five years I experienced food getting stuck in my throat intermittently. As it happened more frequently, it also became more severe—several times I had to force food back up before I could swallow enough water to force the rest down—which is just as disgusting and unpleasant as it sounds. Each time I did so, I felt in danger of choking and thought about the hospital, but 911 always felt silly when I didn't feel like my life was in danger, despite doctors' recommendations. The entire situation was unpleasant no matter where it happened, but I feared it most happening at work or during social events. In these situations I would be forced to excuse myself to the bathroom, always afraid that this time really might be a medical emergency. Over the years swallowing in general got more and more difficult. It progressed to the point where I was using water at every meal to help food along, and I refused to eat if I didn't have access it, for fear of food getting completely stuck. I also began to experience near-constant heartburn for the first time in my life, and developed severe stomach pain. I did not connect any of these symptoms with one another, and felt like a hypochondriac bringing so many separate complaints up with my doctor, so kept quiet, and hoped it wasn't something serious.

I had a bad habit of bolusing after beginning a meal, which meant that the interruptions to my meals for 30 to 60 minutes or more (and often the entire meal was trashed, because I didn't feel like eating after the ordeal) did not have an impact on my blood sugar. One night, however, in the summer of 2013, I bolused and as soon as I began eating felt the familiar painful lump lodge in my throat. I tried all my usual tricks, but the food would not budge in either direction. After 45 minutes, with my blood sugar dipping into hypoglycemia and unable to eat or drink, I picked up the phone and for the first time really, seriously considering calling 911. But I was expecting company, and (as usual) didn't want to cause a scene. Eventually, after more than an hour, I managed a to clear enough of the blockage that I was able to gulp down some fruit juice to raise my blood sugar.

That was the final straw. That was the first situation that felt truly life-threatening to me and, desperate to know what might be causing it, I googled "difficulty swallowing." Amid the hits about strokes and cancer, I stumbled upon a condition called eosinophilic esophagitis. Its symptoms were described as difficulty swallowing, food getting stuck in the throat, heartburn, and stomach pain. Those diagnosed often had a history of allergies or asthma. It sounded exactly like me, but I knew enough to know not to self-diagnose through the internet. I went to my GP and described my symptoms, without mentioning the website I'd read about eosinophilic esophagitis. He didn't know what it was, but knew enough to refer me to a gastroenterologist.

At our first appointment the gastroenterologist listened to my symptoms and history. "There's a condition related to allergies and asthma called eosinophilic esophagitis," he said without hesitation. "I think you may have it."

An endoscopy followed, where the doctor found signs of possible damage caused by eosinophils and took biopsies, which found increased eosinophils in the lining of my esophagus.

So in January of 2014, I received the third life-changing diagnosis of my lifetime. The first (although I don't remember it) was retinopathy of prematurity. The second was Type 1 diabetes. This third was eosinophilic esophagitis. In this condition, which lies somewhere between the immediate, life-threatening reaction of anaphylaxis and the chronic, insidious reaction of celiac disease, the immune system deploys eosinophils—a type of white blood cell—to the esophagus to intercept food proteins which are incorrectly targeted as a threat. The catch is that the condition is not triggered by a single food, like gluten; it can be triggered by multiple, even dozens, of foods within the same individual. And, since the reactions are often delayed, allergy testing is not always accurate, and in some individuals the disease isn't triggered by food but by something entirely different, such as environmental allergies or an unknown cause. Scientists don't fully understand the disease, but like other allergic diseases such as asthma and food allergies, EoE is on the rise.

It was a relief, in a way, to finally have a name for what was happening to me. To be told in no uncertain terms that when food got stuck it was a medical emergency. Since I had read about EoE well before my diagnosis, it came more as a confirmation that a total shock. I trialled a proton pump inhibitor to see if that helped, with no effect. I trialled a course of swallowed steroids from an asthma inhaler, but it caused such unpleasant side effects that it was hard to tell if it helped. What I was not entirely prepared for was being thrust into the world of multiple, major food allergies. I have lived with a severe food allergy my entire life. Reading labels and alerting restaurant staff was nothing new to me. But walking through a supermarket and not being able to eat most of the food there was very new.

Food allergy testing from an allergist revealed that I am allergic to milk—which I had already been largely avoiding due to allergy symptoms. In addition to this allergy, however, tests showed that my immune system is being triggered by wheat, eggs, peanuts, soy, shellfish, sesame, and tree nuts. Skin tests also confirmed my environmental allergies that, for the most part, I already knew—I am allergic to dust mites, tobacco, all grasses, trees, cats, dogs, and horses. The allergist declared that my allergies and asthma were, in general, not well controlled despite already taking daily antihistamines and taking measures to control environmental exposure to allergens. I walked away from the appointment with a list of foods to avoid and a bag full of antihistamines, nasal sprays, and inhalers.

Like any life-changing diagnosis, I've felt in some ways like my life has been turned upside down. For a few days after the appointment with the allergist I walked around constantly feeling on the verge of tears. I didn't want this—in particular, I didn't want to have to avoid multiple foods for the rest of my life. But a week into the diet I began to feel better than I had in a long time, and suddenly felt a sense of hope. That hope was dashed a few days later when an allergic reaction to something caused a huge rash on my face and the return of intense stomach pain. But soon enough this, too, was replaced again by a period of feeling great.

It's been a rollercoaster, as any chronic illness is. I have found online groups that, like the diabetes online community and online ROP community, have been a tremendous source of information and support. I cannot imagine being diagnosed with a condition like this before the days of the internet. But, in the six weeks since I went from having two or three food allergies to having nine or more (I am still having improved, but daily, symptoms), the good days have begun to vastly outnumber the bad. I found that my allergies—which had begun to interfere with my diabetes control due to allergic reactions to infusion sets—were better controlled than they had been in ages. My skin tolerated infusion sets better—they still get itchy, but no longer so irritated that they affect insulin delivery. I've had far fewer instances of breaking out in random hives. My stomach no longer hurts constantly. Heartburn has become much less frequent. I can even eat the majority of a meal without water sometimes, if I want to.

I am not at the end of my journey—not even close. There may be more foods I have to avoid—I have been instructed to avoid anything I suspect is causing symptoms. There may be medications, if I'm still having symptoms despite food avoidance. There will be further endoscopies to monitor the condition. There will, at some point, be an attempt to re-introduce some foods to see if they trigger symptoms. I am learning, too, how long foods take to trigger symptoms and how long symptoms take to retreat. As with most chronic illnesses, trial and error and patience are a virtue when it comes to EoE.

But, despite all this, I've managed. I've survived shopping, work luncheons, and even air travel and two conferences. I have some exciting summer plans that, for a moment, I considered cancelling, but in the end didn't. Because although I would never ask for such a diagnosis, I've begun to believe I can handle it—I have been handling it, through all its ups and downs. I truly believe that having had prior experience with a disability and chronic illness and allergies has helped me to cope in many ways. Despite being life-changing, chronic condition, I won't let it change the course of my life.