Friday, February 16, 2018

The Road Less Travelled

As a kid, travel with my family was all about the exhilaration of flying and the excitement of our final destination. I knew nothing of the logistics and planning that went into even a short trip. When I began travelling without my parents as a teenager and young adult, I found the experience quite stressful at first. But over the years, as I've logged more and more trips, my skills have improved and I've developed routines and strategies that have made travel as painless as possible.

As an adult, travel is an important aspect of my career. I don't travel constantly, but I do travel regularly. I live with several conditions that make travel more challenging than it might be for most people. The fact that I'm legally blind is, to outward appearances, what would seem to interefere most with travel. But it's actually the easiest thing to deal with. As long as I have a good travel itinerary, store important information in an accessible and non-digital format, and am not afraid to ask for assistance navigating through airports and hotels when needed, it's a non-issue. The only other considerations I make for my vision are to ensure that my various devices (iPad, BrailleNote) are charged up before a flight, since neither the on-board entertainment systems nor print materials are accessable, ensuring I bring earbuds, and (for really long trips) bringing a backup white cane.

The chronic conditions I live with pose a far greater challenge on me than my level of vision. Type 1 diabetes brings with it a heap of medical peraphernalia; severe food allergies (and eating a low-carb diet to manage my diabetes) makes eating when travelling a major challenge; and severe environmental allergies, asthma, and eczema mean that I have to be careful with what I'm exposed to on airplanes and in hotels, and during daily life in general. Over the years I've found strategies that have helped me deal with each of these factors.


First up when going on any trip is packing. Ensuring that I don't forget anything is extremely important and probably the most stressful part of the trip for me. Having been stranded with insulin but no pen needles, a failed continuous glucose monitor (CGM) sensor and no test strips, spending hours in an airport without any food to eat, or having my insulin pump alarm that the battery is low when I have no replacement on hand are not experiences I'd like to repeat.

A backed suitcase with packing cube, allergy cover, toiletry bag, and Pack-It cooler

I use packing cubes both to keep my suitcase organized and to fit more into my suitcase than I'd otherwise be able to. I have a set of four packing cubes, a garmet folder, a toiletry bag, and various other kits that keep everything contained and tidy. I have a suitcase, a carry-on bag that attaches to the suitcase's handle (important so that I can comfortably roll both while keeping one hand free to use my cane), and my usual, everyday backpack, which is usually what I bring as carry-on luggage. I always bring double the medical supplies that I'll need for a trip, and I always pack the medical supplies in my carry-on luggage. For long trips where I've had an entire bag of insulin pump and other medical supplies, most airlines will permit a bag containing only medical supplies as a second carry-on item.


Two bags of medication, one clear containing liquid medications such as EpiPens, a glucagon kit, insulin, eye drops, and creams, and the other blue containing other medications
Once I get to the airport, I usually ask for assistance through security and to the gate because it's the quickest and easiest method for me to get there. I always separate my medication into a clear "liquids" bag and a bright blue "solids" bag. I once left an entire bag of pump supplies at security after they took it out to inspect, and didn't realize until I was at home. Ever since then, I've put my medical supplies in a highly-visible coloured bag. I always declare to security that I'm wearing an insulin pump and continuous glucose montior, and have both clipped to my pockets fully visible. I have a doctor's note stating that I have severe food allergies and Type 1 diabetes and need to keep my medical supplies with me at all times,in case anyone tried to take them away, but I've never needed to use this. Invariably I set off the metal detector and need a pat-donw, so I always leave extra time for getting through security. Frequently my BrailleNote is a cause of suspicion and needs to be swabbed, too.

I pre-board the plane because of my visual impairment, but people with severe food allergies are permitted to do this, too, if they ask. Since I'm not allergic to nuts or peanuts, airlines don't provie a buffer zone. I've experienced three allergic reactions while on board a plane (fortunately none were severe, though one was getting to a scary stage), and countless high and low blood sugar episodes. So it's essential that I'm as prepared as possible. When I get on board, I wipe down the arm rests, seatbelt, and tray table (I use Wet Ones Sensitive Skin) to hopefully remove any allergens and get out what I jokingly call my "utility belt", which I've stocked while waiting at the gate.

A Spibelt holding an EpiPen, rescue inhaler, and tube of glucose tablets
My "utility belt" is a double pocket SPI-BELT that fits an EpiPen, a tube of glucose tablets, an inhaler, and if needed can also fit a second EpiPen (or a glucagon kit), glucose gel, and a small GoTubb container containing medication like Benadryl and Advil. I clip my Dexcom receiver to the belt so it's easily accessible, and of course my pump is always clipped nearby as well. I always bring my own safe, low-carb snacks and meals with me (containing no liquids) and never eat meals provided by the airline. If my backpack ends up being stored in an overhead compartment, I have a bag available where I can store my food, entertainment devices, cane, and glucose meter under my seat. I don't currently bring a mask on flights, but having reacted to both food people next to me were eating and cat and dog dander on flights in the past, I will likely get this Respro allergy mask and bring it with me just in case I end up sitting beside someone with a cat (also for use when cleaning and during horrible wildfire summers).


Once the flight is over and I've found my way to the hotel, I set up the room in a way that works for me. I have a twin sized Allersac, basically a portable dust mite cover, that I put on the bed. If needed, I call the front desk and request non-feather pillows. I disregard the hotel soap, shampoo, and conditioner in favour of my own versions that I've brought in GoToob containers, which won't aggravate my eczema. (If travelling to colder climates, I've also learned that it's important to pre-test hats and gloves, something I discovered on a recent trip to an area with -25°C weather where the toque and gloves I'd brought, which I hadn't worn in a long time, made my skin feel like it was sunburnt and break out in a rash.) I also put food I've brought in my checked luggage into the hotel fridge. I never put insulin or other medication in there due to the risk of freezing it by accident. If I'm travelling to a hot location where medication may overheat, I put it in one of several Frio cooling pouches that I've bought over the years.


Eeating with both severe food allergies and a low-carb diet for diabetes is a major part of my travel preparations. I have two Pack-It lunch bags, a snack sized one and a deluxe sized one, that I use to bring food that requires refrigeration with me. I put food that doesn't require refrigeration in a small packing cube. I bring all food, plus the freezable lunch bags, in my checked luggage, not in my carry-on luggage as there may be restrictions around liquids and ice packs with carry-on luggage. It's important to check and follow any prohibitions around food if crossing international borders. I bring other helpful supplies, including a small cutting board, a set of utensils (with only a table knife, no sharp knives, and ensuring they are declared to customs if travelling across a border), Tupperware containers (regular ones and collapsible ones), paper towels and plastic bags, and a small container of dish soap. I've also recently purchased a small collapsible travel kettle, because many hotel rooms these days only have Keurig machines, and water from them tastes foul. When travelling through customs, I find it very helpful to type up a list of all food that I'm bringing with a note at the top stating that I'm bringing so much food due to severe food allergies and Type 1 diabetes. I've always handed over the note and had no problems whatsoever, which makes for a stress-free experience.

A small hotel fridge stocked full of low-carb, allergy-friendly food
Depending on the type of trip I'm going on, I eat anywhere from 75% to 100% of my meals from the food I've brought. I often get a cab or a ride to a nearby grocery store to buy some fresh vegetables. But other staples, like bread, yogurt, salad dressing, and so on I often can't find in allergy-safe and/or low-carb versions, so bring my own. I've mastered the art of living out of a hotel room with only a fridge and microwave (or, once, only a fridge) for up to ten days. I sometimes eat at restaurants, particularly at dinner, but my meal selection is very limited and the risk of cross-contamination high, so I often don't really enjoy the experience nearly as much as the colleagues or friends I'm eating with. When I do eat out, I find food allergy cards handy so that I don't have to announce in front of colleagues what feels like half my medical history. If I'm uncomfortable with the restaurant, I'll go to socialize or network but decline to eat and fill up once I get back to my hotel room.

My final preparations are that I always wear my MedicAlert bracelet. I pick that brand in particular because it has emergency contact information on file. I also frequently (though not always) let colleagues I'm travelling with know to get emergency medical help if I don't wake up in the morning, since I have a history of severe overnight lows that continue even though I've been using a Dexcom at all times for the past three years. I also usually mention where my EpiPen is in my bag and give a brief demonstration of how to use it. Although I bring glucagon on trips, it's intended for mini-dosing only, and I don't expect any colleagues to use it.

All of this may seem like a lot of work ... and it is. But it gets easier each time, to the point that it becomes almost routine. And it's worth it to be able to travel in relative relaxation, minimizing the risk of blood sugar swings, allergic reactions, and other medical issues from rearing their ugly head. Before I started implementing these strategies I had allergic reactions on planes and in restaurants and entire days (or nights) spent in my hotel room sick from diabetes, allergies, or both. That is not a fun way to travel! Fortunately, these preparations pay off in allowing me to enjoy the trip work, learn, relax, or join in on whatever everyone else is doing.

Tuesday, May 17, 2016

The Hardest Part

Note: This is day two of Diabetes Blog Week, and the topic is The Other Half of Diabetes: "We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?"

Most people, when they think of Type 1 diabetes, think of the parts they can see. The needles, mostly. Finger pricks a dozen times a day. Insulin shots four to six times a day. Infusion sets every two or three days. Continuous glucose monitoring sensors every week. Blood draws every three months. For most, this is what they think of as the hardest part of diabetes.

But it's not the hardest part. Not even close.

The hardest part isn't the finger sticks, but what's contained in that tiny bead of blood that's squeezed out afterward. Despite all our best efforts, that tiny drop of blood could indicate an emergency that requires us to drop everything and act, and we have to be constantly vigilant for such an event.

The hardest part isn't the insulin injections or the infusion sets, but rather the medication that these devices deliver. We are grateful that it saves our lives each day, but also wary of the fact that, if we're not careful, that same medication can be lethal.

The hardest part isn't the continuous glucose monitor sensor, but rather the monetary price we've paid for the priviledge of accessing such technology. We're well aware that, were circumstances different, this same technology may be out of reach, and we're grateful for being able to wear it.

The hardest part isn't the blood draws every three months, but rather what those blood tests may reveal. We live with a worry that follows us like shadows, never quite leaving no matter how good our control is. Regardless of how hard we try, we may not escape complications in the end.

The hardest part about diabetes isn't anything that's visible. It's all the stuff that's invisible. It's the constant vigilance. It's the daily grind. It's the unending adjustments. It's the interrupted sleep. It's the financial burden. It's the unpredictability. It's the extreme highs and plummeting lows. It's worrying about the future. It's the utterly unrelenting, unforgiving, endless nature of diabetes.

I have no real answers, even after having lived with diabetes for nearly three-quarters of my life. It's mentally and emotionally hard. It will always be hard. I just try my best each day and take things one day at a time.

Monday, May 16, 2016

The Nature of Impossible

Note: I'm participating in Diabetes Blog Week for the second time. This is my post for Monday's theme, Message Monday: "Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?" My message is a little different from most other diabetes bloggers...

I crouch, shifting my position slightly as the sound of the ball bouncing over gravel grows nearer. Seconds later I feel the satisfying thud of the ball rolling into my glove. Picking it up with my other hand, I send it rolling back twoard my partner, a blur of colour several meters away against the dimming sky.

"Okay, everyone, time to come in!" comes the voice of the coach. We grab the rolling balls and crowd into a semicircle around him as he debriefs us and goes over the date of the next practice. "And," he adds at the end, "since we're going to become an official team, we need to think of a name. That's your homework for next week."

Kids disperse in the gradually approaching dusk, galloping up to parents to announce the exciting news. My dad appears by my side on the field, and together we wind our way through the group, my dad greeting parents and me yelling over my shoulder that I'll see classmates the next day. Reaching the sidewalk we turn left, heading to the parking spot he always uses.

"We have to think of a name," I exclaim as we walk. My dad touchs my shoulder briefly, steering me slightly to the left to make sure I avoid the jog in the sidewalk, nearly invisible in the deepening dusk. "Do you have any ideas?"

"I have one," my dad says, "but I'd like to hear yours first."

I look around me, at the deep blue-grey sky overhead, the sillhouetted darkness of trees, and the scattered lights of home windows and streetlights, appearing to me to float in the darkness. I had an idea.

"We'll say our idea together," I suggest. I pause and look up eagerly at his tall shadow that blocks out the grey of the warm, late-spring sky.

He agrees, and a moment later we say simultaneously: "Fireflies!"

That night seemed magical to me. I sat in the car on the way home brimming with excitement at the idea of sharing the name that we had both announced at the same moment, as if we had shared a thought. I thought of how, at the next practice with my classmates and friends, we would pick a name and become an official team, and I couldn't wait.

I didn't know that this would be my last softball practice, but it was. The official team formed never hearing the name that my dad and I had thought of, and I never practiced with my peers again. I don't remember what explanation my parents gave, but years later they told me that having a legally blind child on the team was a liability the organizers were not willing to accept.

My parents had seen me succeed at skating lessons, swimming lessons, downhill skiing, and gymnastics—sports where, when I wasn't wearing a "BLIND SKIER" vest or running head-long into a fellow player and breaking my nose, many observers didn't even realize that I had a visual impairment until they were told. Instead of simply accepting "no" as an answer, my dad called around to half a dozen Little League teams until he found a coach willing to work with him to have me included.

The entire team was made up of kids I didn't know, and it was baseball, not softball. I stood in the outfield for what felt like ages with my dad stationed nearby, simultaneously hoping the ball would be hit in my direction and dreading my dad's announcement that the hard, invisible object was hurtling through the air toward me. I had no idea which team was winning, though my dad tried to keep me up to date on what was happening during the inning. When our team was at bat I would stand and twine my fingers through the chain-link fence, peering out at a field I could barely see, and wait for my turn. When it came, I tried to hide my embarrassment when the coach let the pitcher from the opposing team stand at half distance, and pitch well beyond three strikes as I listened for shouts to "Swing now!" and mostly missed.

I decided that perhaps baseball was not the best sport for me, and quit after that first season.

I am grateful that my parents gave me the opportunity to play baseball, because they gave me the priviledge of making my own decision that baseball was not right for me, rather than making it for me. For people with disabilities, choices about what they can and can't do, what they can and can't access, and ultimately what they are and are not capable of is often taken out of their hands. At such a young age I decided that baseball wasn't for me because I didn't like it, not because I couldn't do it. The difference a change in those two beliefs could have made on my life is profound.

As a kid, I didn't really think of myself as having a disability. I never tried to hide my visual impairment, because I just didn't see myself as very different or as having anything to be embarrassed about. And my classmates and friends followed suit, adapting naturally to my visual impairment as just one aspect of who I was, not something to get worked up about or pass judgement over.

As I grew older, though, I realized that others were sometimes making judgements on me. In grade five, when all the kids got the opportunity to sign up for band if they wanted to, teachers advised that I shouldn't participate because I couldn't read sheet music. For years, I watched my brothers come home lugging saxephone and trumpet and listened with jealousy as they practiced. My parents signed me up for piano lessons instead, but the fact that I'd been denied band made me yearn for the experience.

With the protective shield of my family and friends surrounding me, I grew up having no idea that, to society, blindness meant darkness, fear, dependence, pity, and helplessness. As an adult, however, I was assaulted by these deeply-held, often subconscious attitudes in full force. And suddenly, people everywhere were trying to decide for me what I could and couldn't do: telling me I couldn't travel independently, couldn't take a course in university, couldn't succeed at a chosen career path, couldn't participate in certain sports, and couldn't use medical devices. If it wasn't stated directly, it was implied through comments and actions. It was as if, not having any idea how they personally would function without vision, people just assumed a task was impossible.

What would most sighted people think is impossible for a blind person to accomplish? Driving a car, perhaps. Or have careers as an oceonographer, meteorologist, software engineer, journalist, photographer, mathematics professor, politician, medical doctor, teacher, lawyer, or working at NASA? Or raising children who are fully sighted? What about flying a plane? Or climbing Mt. Everest? Or winning a national reality TV show?

Individuals who are blind have done all these things and more.  (The first person who is blind to climb Mt. Everest did so five years before the first person with Type 1 diabetes accomplished the same.) Yet, so many assume that it can't be done. Sure, some of these things such as flying a plane or driving a car are only possible with some assistance or with not-yet-available technology. But that's in large part because people who are sighted assumed that people who are blind wouldn't be able to drive, fly a plane, or do any number of other things. And in that assumption, they designed technology that is visually-dependent and inaccessible, which creates an artificial barrier. (What if the instruments on a plane gave audible or tactile instead of visual feedback? What if roads were designed with tactile paint to follow instead of visual lines and traffic tones instead of lights?)

The nature of impossible is often more about assumptions and attitudes than it is about reality.

It's not surprising that many people assume the many basic tasks are impossible for people with visual impairments to complete independently. Most people get all their education about blindness from movies or novels. Most fictional characters who are blind that I've seen stumble around having no idea of where they are or what's happening around them and struggle to function without assistance from others. No wonder people standing beside me waiting for a light to change can't fathom how I could cross that street independently. I can't count the number of times I've been grabbed without a word spoken in order to be "helped" across the street, down the stairs, or onto the bus simply because people assume I need help.

I was lucky. I grew up largely shielded from these stereotypes. Many kids who are blind aren't so lucky. They grow up surrounded by parents, teachers, and peers who pummel them with their misguided beliefs about what someone who is blind can and cannot do. And for a child who hasn't had the opportunity to discover their own abilities for themselves, they may come to internalize these beliefs. The same is true for the person who loses their vision as an adult, having spent their entire lives learning that blindness means darkness, fear, dependence, pity, and helplessness. No wonder it's scary.

And I want, more than anything, to change that message.

I want people, especially people who may face a visual impairment in the future, to know that blindness is not the end. It's not the end of enjoying hobbies. It's not the end of a productive career. It's not the end of raising a family. It's not the end of attending social events, or travelling the city, or going on a global tour, or making a scientific discovery that changes the world. Sure, it's not easy—most major, life-changing events aren't. But, even though stress and anger and tears may be part of the process, people do not need ot be so deeply frightened of something that doesn't need to be scary. There are ways of doing virtually everything that was once done visually without vision, including reading, using a computer, and getting around.

No one needs all that extra fear heaped on top of an already difficult adjustment process. Blindness is not the end of life, only the beginning of a new way of doing things.

Sunday, January 31, 2016

Autoimmune, Part Deux

Several months after I was diagnosed with Type 1 diabetes, I sat in our family doctor's office with my dad while she talked about having me get a blood test for something called celiac disease. Like diabetes mere months ago, I had no idea what this was, but the doctor explained that some kids with Type 1 also had this condition and couldn't eat certain foods like bread. As she stepped out of the room, I asked my dad what I'd eat if I couldn't eat bread. "They make potato bread," he replied.

"Potato bread?!" I exclaimed. "I wouldn't be able to eat that, either!"

"Oh, that's right," he chuckled as the doctor walked back into the room with the blood test form.

I didn't realize it at the time, but it was my first hint that often people with one autoimmune disease develop another (or several others). I learned that fact years later as I delved into reading online diabetes content.

Thankfully, I didn't have celiac disease when I was tested back in 1991, and I haven't developed it since. In fact, I've gone for over 20 years without developing another autoimmune condition, although my immune system has remained plenty overactive in the form of allergies and related conditions. Over the past year or two, these allergic conditions have clamoured for a spot that rivals diabetes in terms of their effect on my everyday life. I actually found myself getting a bit cocky. My immune system has been so focused on attacking the external world—maybe I won't be one of those people who develop multiple autoimmune conditions.

But then, sometime during the fall, things began to change.

I gradually began to feel tired. Exhausted, in fact. Getting up in the morning or running errands became great feats of willpower. I worked at getting my sleep schedule exactly right, as it had somehow become messed up with me being unable to fall asleep for hours or waking up restless and hungry and hot in the middle of the night. I worked on exercising as consistently as I could, which I'd stopped doing because I felt so tired all the time. I worked on eating better, because my stomach had been getting upset a lot lately. I worked on controlling my blood sugar better, since it seemed that my pump settings were suddenly all wrong and I was spending a lot of time battling highs. I worked on keeping my allergies under better control, thinking that those could be the cause of my tiredness as well as my eyes being in a constant state of (at times almost unbearable) irritation.

A small alarm bell went off in my head when I found my arm getting tired just lifting a one-litre carton of almond milk to pour. I called my GP and made an appointment. It was my first inkling that this wasn't normal tiredness. Around the same time I also noticed that my heart was pounding much of the time for no reason. One day I also found that my hands were trembling when I did things like cooked or unlocked a door, which raised my level of concern a notch farther but that I thought must be from my muscles being so ridiculously tired. And, as things approached the coming climax, I found myself feeling overheated and dizzy at times, but who wouldn't when their body acted as if cooking dinner was running a sprint?

Fortunately or unfortunately, I didn't make it to the appointment I'd scheduled with my doctor. One weekend, in the middle of sitting having a lengthy text conversation with a friend, my heart started to pound faster than it ever had before. I interrupted our conversation to tap out: I don't think it's normal for my heart rate to be 140+ while I'm just sitting here. :(

As my friend's alarmed return text popped onto the screen and my fitbit's readout climbed to 186 bpm before cutting out completely, I sensed that things may have reached a new level of severity. I tried lying down, and although that lowered my heart rate somewhat, it still beat far too fast. A text came through from my friend suggesting I go to a walk-in clinic. I called my parents to ask their opinion. They suggested the hospital. I decided to wait an hour to see what happened, but when nothing changed, my parents came to pick me up and together we headed for emergency.

Monitor displaying my vital signsUpon arriving at the hospital, they wouldn't even let me walk to the bed; I was immediately taken into the back in a wheelchair. In short succession I got hooked up to monitors, had a chest x-ray, got a bunch of blood drawn, had an ECG done, and had an IV inserted after only two failed attempts (not bad for me). I told them about how bad I'd been feeling lately, at least everything I could remember amid my mind's worried thoughts. A couple of hours later I had another ECG done and got more blood taken. And then I lay there for hours, alternatively talking to my parents and texting my friends and resting because even texting raised my heart rate and tired my arms out, wondering what was causing my body to go haywire. Emergency doctors and cardiologists came by and ran through some possibilities related to my heart, none of them sounding particularly good.

At some point after midnight my parents left to go get some sleep. And then, during the early hours of the morning, one of the doctors came by again to tell me that my blood test for TSH had come back so low that it was undetectable.

"Thyroid," I thought. I felt a jumble of emotions all at once. On one hand, this was probably the answer to why I'd been feeling so horrible, and I was positive that a thyroid problem was way better than a heart problem. On the other hand, I had no idea how an undetectable TSH level was treated. I also had a hunch that thyroid problems were autoimmune, and felt a flash of annoyance that my immune system had screwed up once again.

I stayed in the hospital until the following afternoon. During the night I was given a beta blocker to slow down my heart rate and lower my blood pressure. Not having my heart pounding as if I was exercising while lying still allowed me to sleep for a couple of hours. During the night and the next morning I was visited by a number of endocrinologists who ran through a list of symptoms. Obviously my heart rate was fast and my blood pressure was high, but had I been tired lately? Yes. Trembly? Yes. Upset stomach? Yes. Trouble sleeping? Yes. Hungry? Yes. Hot and sweaty? Yes. Irritated eyes? Yes. About the only symptom on their list I hadn't experienced was losing weight. And although they didn't ask about my blood sugar lately, I did learn that thyroid hormone affects almost every part of the body, including the speed at which food digests. That would probably explain my struggles with spikes and why it seemed as if all my pump settings were wrong.

The endocrinologists also explained what was going on. My thyroid was pumping out way too much hormone, which is why my TSH level was so low. I was given a medication to block my thyroid from making the hormones T3 and T4. The exact cause wasn't known yet but, as I suspected, they said the most likely cause was an autoimmune attack.

I texted my parents in the morning to let them know what was going on. My hospital breakfast was not terrible and, impressively, accommodated my multiple food allergies. (I'm not sure why I find this so impressive; perhaps because the last time I was in hospital my mom inspected the food as if she thought they were trying to kill me.) The doctors offered to keep me admitted for another day or two, but said it was safe to go home if I wanted that option. Of course I decided to go home, bringing with me two prescriptions, a form for lab work, and information about getting a few other tests done.

After I got home, I continued feeling awful for the next month. I used up a fair number of my work sick days, although luckily the Christmas break provided me some built-in recovery time (even though it's not great feeling sick over the holidays). Some complications happened in terms of medication—I found out when I saw my allergist that beta blockers can block asthma medications and epinephrine. Not good for someone with asthma and food allergies. So, I took as little as I possibly could with plans to stop as soon as I felt better (which had been the plan all along).

Finally, one morning more than a month after starting the thyroid-blocking medication, I woke up and actually felt awake and energetic. I went about my day and my heart wasn't pounding and I wasn't wanting to collapse into bed by early evening. It was such a relief. I didn't fully realize how awful I'd been feeling for months until I finally felt better. Once I felt better, my blood sugar also took a dramatic turn for the better.

I saw my regular endocrinologist last week, six or seven weeks after this whole ordeal happened. He had all the test results from the hospital, including the blood test they did to see if I had antibodies attacking my thyroid. Not surprisingly, the antibody test was positive, meaning I have Graves' disease. This is an autoimmune disease where antibodies attack the TSH receptors on the thyroid. Even though my body's TSH level went to zero, trying to tell my thyroid to quit making hormones, my thyroid thinks that it's constantly being told to pump out more hormones because it's being stimulated by the attacking TSH receptor antibodies.

By the time I saw my endocrinoloigst my T3 and T4 levels were one-half to one-third what they had been at the hospital and were in the normal range. My TSH level, though, was still near zero. And so the plan that my endocrinologist outlined is to stay on the thyroid-blocking medication, get thyroid levels checked every six weeks so that he can adjust the dose as needed, and then continue the medication for a year or two. Some percentage of people are able to stop taking the medication after one or two years because their immune system stops producing antibodies, but many aren't. So, if I'm still needing thyroid-blocking medication in a year or two, we can talk about other options. Other options being destroying my thyroid, which doesn't sound appealing to me. Either way, there will be medication for life (either thyroid-blocking medication or thyroid replacement medication), unless I'm in the lucky group that has the thyroid antibodies disappear.

This entire diagnosis shocked me and caught me completely off guard; partly, I'm sure, because of the drama of being diagnosed. Like diabetes, it was a disease I'd not really heard of coming completely out of the blue. And, just like diabetes more than two decades ago, the symptoms were all there, I just had no idea that they were all connected to my thyroid going into overdrive. I've read a lot about hypothyroidism and diabetes, but nothing about hyperthyroidism and diabetes. They are both caused by an autoimmune attack on the thyroid but involve different antibodies.

On the plus side, managing this disease (at least so far) has consisted of taking two little pills a day. There are still some days here and there where I feel bad, but they aren't often, and the daily management of this disease doesn't even compare to diabetes or allergies. I'm not even two months in and I already feel like I've reached an acceptance stage.

Although ... it is perhaps a bit sad that I already find myself half wondering what innocent bystander my immune system might decide to target next.

Friday, December 5, 2014

Teachable Moments

"I wonder if there's anything here I can eat," I ponder as I walk through the cafeteria, peering into glass cases with rows of food I can't identify. My colleague launches into a description of all the foods available—burgers, fries, baked goods, parfaits and dessert bars, bags of chips and Cheezies and pretzels, candy and chocolate, coffee and hot chocolate, pop and juice and water. I feel a bit guilty as I decline each item in turn, either because I'm allergic or because it's too much sugar. After many minutes of looking and a debate about whether to bother asking if the yam fries are cooked with the potato fries, I finally settle on a cup of fruit salad and a water bottle.

We wind our way through the maze of tables and luggage as the ferry deck rumbles under our feet. After unloading our coats and bags onto empty chairs and plopping into an empty table, my co-worker digs into her burger and fries and I dig into my bag. My cup of fruit salad sits alone on the table in front of me.

"Aren't you going to eat?" she asks, pausing and peering at me over a yam fry.

"Yep. I just need to check my blood sugar," I say, my meter already out and lancing device poised to pierce my skin. A moment later there's a beep and 7.1 mmol/L flashes onto the screen. My co-worker continues to watch as I unclip my pump from my pocket and dial in my blood sugar, then pick up the fruit salad and rotate it in my hand, simultaneously positioning my cell phone to snap a photo so I can zoom in on the nutritional information.

"Here, let me read that," my colleague says, and I hand the container over.

"I need the carbohydrates," I say.

A moment of silence as she studies the list. "A hundred and fifty," she announces.

"No—carbohydrates, not calories." A few more moments pass as she reads the entire label aloud under her breath. "Ah, here!" she says as she reaches the information I'm looking for. "Fifteen grams." I ask if that's for the entire fruit cup or only half, directing her to look at the listed serving size near the top. It's a handful of moments before she finds the right line and says the serving size is half the cup. I dial the information into my pump.

"Why do you need all that information?" she wonders just as I'm about to press OK to deliver the insulin.

I turn my pump screen towards her so that she can see the calculations displayed there. "I take different amounts of insulin each time I eat based on how many carbohydrates are in the food," I explain. "I enter my blood sugar and the carbohydrates into the pump, and then it recommends an insulin dose. See? It's recommending 4.1 units, but I'm only taking 3.5."

She studies the screen. "Why wouldn't you take what it tells you?"

I hesitate. How to explain the complexities of diabetes ... It's truly not possible to fully convey the challenges of managing Type 1 diabetes without living it. But when someone asks—when someone is truly curious about what's going on—well, then it's hard to turn them down. "Sometimes I override the pump if I think my blood sugar might go high or low," I say. "For example, this morning I woke up high, so I programmed my pump to give some extra insulin over what it recommended. Now I think I might go a bit low since we're running around dragging suitcases, so I'm giving myself a bit less insulin."

"Why is your blood sugar going so high and low?" she asks, her tone almost demanding. I explain that diabetes is sometimes hard to control—your body's need for insulin changes on a moment to moment basis, and you've got to try and respond to and anticipate those chnages to adjust insulin doses. She asks what my blood sugar is and what's normal for someone without diabetes, and seems concerned when she realizes that 7.1 mmol/L is outside the normal range. She asks why it's high right now, tossing out a myraid of possible reasons. I smile rueflly and tell her that my blood sugar is not really that high at the moment—my reading that morning had been 21.3 mmol/L. This time she actually gasps, struggling to understand how I can have such a high reading and not know what caused it.

"I don't know," I say, which is the truth. "Sometimes I just go high or low and can't find a reason why. That's just how Type 1 diabetes is sometimes."

At work, while I am not exactly outgoing about my health conditions, I make little effort to hide them. My visual impairment was out as soon as my co-workers saw me walk into the office with a white cane. My food allergies were out when everyone asked why I wasn't eating at the first office potluck. My diabetes was out the moment my colleague said, "What's that gizmo?" as I bolused for lunch at a conference. My philosophy, at work and in the rest of life, has always been that the only way the general public will learn anything about these conditions is if they talk to real people about real experiences—not through books and movies and even media coverage, where misconceptions run rampant. So, when people ask, I invariably answer.

My colleague and I are quiet for a moment as we eat and as she processes the information I've just provided. Suddenly she looks up at me and asks, "So what happens if your blood sugar goes really high or low? What will happen? What should I do? Will you die?" The questions come out in a rush, as if it just occured to her that something serious might happen on this business trip.

I launch into a short explanation of highs and lows—that I need sugar if I'm low, and insulin if I'm high, but that if I ever pass out or don't answer my door or phone or am acting weird, she should just call 911. She goes on to ask about allergies—where do I keep my EpiPen, what should she do if I have a reaction? I try to keep the delicate balance between being serious but not scaring her; I don't want her to feel like she's responsible for me. After a few minutes our conversation gradually shifts to other topics.

I think back to the past few months of office potlucks and celebrations. Sitting with my own food while everyone else lines up to pile their plates with dishes others have brought. Sitting as a co-worker beside me tells me how bad they feel that I'm not eating the great food, and offering again and again to help me find something I can eat. Finally, with echoes of my childhood experiences flickering at the edges of my throughts, I accept. A momentary thrill rises in my stomach as I think about actually eating something from the table—but reality sets in as soon as the descriptions of the food come. Wheat, milk, and potatoes are in everything. I finally settle on a few plain veggies, feeling uneasy that they are sitting next to a container full of milk-filled dip. She offers other options—spicy chicken, spring rolls, a vegetable dish—but I don't know what's in them. I think back to a scary reaction I had over the summer—a meal which outwardly contained nothing I was allergic to, but which had chicken cooked in an oven alongside potatoes—and I can't risk it. I turn everything else down. I try, and fail, to think of a way to explain that it's more relaxing for me to eat my own food, which I know is safe, than to eat other people's great home-cooked food and worry that I might have an allergic reaction, even if it looks safe on the surface. I feel frustrated at my lack of words to convey this and my inability to teach my well-meaning colleague anything useful.

I watch my colleague as she sits across from me now. She had been one of those who had constantly tried to convince me to eat foods, suggesting that I remove the part that I'm allergic to so I could eat the rest. I told her repeatedly that food allergies didn't work that way, feeling like she would never learn.

Then, one night in September I ended up in emergency until after midnight due to an allergic reaction. Still feeling horrible and sleep-deprived the next morning, I called in to work sick and explained the reason. Overnight, the cajoling from my colleagues stopped. Suddenly, people were cautiously inching plates of dangerous food away from me as I sat down and double-checking that things I ate were safe rather than trying to convince me to indulge.

Later that evening, after I've settled into my hotel room, I discover that I've forgotten the food I normally pack for trips. I dig a bruised apple and a crumbled cookie from my bag and eat them—I dodn't feel like going on a food hunt, which is difficult at the best of times, alone after sundown. The next morning at the hotel restaurant I order hardboiled eggs and bacon—grateful that I've recently added eggs back into my diet after further allergy tests, and that the restaurant staff seem knowledgeable about food allergies. I steel myself for the long day ahead with no food, since the catering had been arranged a week earlier and there was no time now to have a lengthy conversation with them about allergy requests at the last minute.

The workshop starts early the next morning. It's presented primarily by me, with my colleague flipping slides and attending to technical details. As noon approaches she announces that she's running to the store and will be back by lunchtime. I don't think much of it, thinking that we just need more refreshments for the afternoon session. Everything is going well, so I continue teaching the workshop without her.

When the catering arrives I sit and review the upcoming half of my PowerPoint presentation as the participants fill plates and eat. I'm just beginning to wonder where my colleague is when she bursts through the doors and plunks a bag down next to me.  Before I have time to ask, she takes an apple, some Mandarin oranges, and a tub of So Delicious coconut yogurt and places them in front of me.

"Here, is this okay for your lunch?"

I'm literally speechless. Finally, I ask if these are really for me, thinking they might be snacks for the participants.

"Of course they're for you—you need to eat!"

Still hardly able to believe it, I thank her. Then I ask how she knows about coconut yogurt.

"You mentioned it the other day when I asked you how you could eat yogurt," she said. "You said you got it at Safeway. I noticed a Safeway down the street while we were driving here."

I'm grateful that she would even think of my problems—problems that don't affect her in any way. After thanking her several more times, I take my lunch and join everyone else to talk and connect before the afternoon session begins.

In that moment, my co-worker became someone who truly understood at least one small part of what food allergies are about.

As an educator, I should have known better. People need to learn on their own terms and at their own pace and in their own way. Each attempt at providing information, correcting misconceptions, and relating experiences may be having a positive impact, even if it's not immediately apparent and efforts seem futile. While I was getting annoyed with my colleague's misconceptions and feeling as if she would never learn, she—and all my co-workers—were indeed learning. Did they understand everything about my situation? Not likely, but that's an unrealistic expectation, anyway. The important part—what I needed to be reminded of—was that they were slowly soaking up the information I provided, and that's really all that I should expect of anyone who doesn't live )or work) closely with a condition or circumstance.

Saturday, September 27, 2014

Before and After

Thinking back, I see my life divided into segments, each punctuated by events which shift the course of my life forever. Segments where life changes, where I'm never quite the same Before and After.

A new chronic illness diagnosis. A new job that marks a step up in my career path. The unexpected loss of a best friend. Finishing a master's degree fraught with challenges. Being caught in the midst of a province-wide political struggle.

A series of five events have occured this year in swift succession, with virtually no time for life to return to normal before the next hit. Not all of them bad, but all of them stressful and life-altering in their own way. One of these events alone would be enough to make this year stand out in my mind. Combined, they have each in turn deeply affected aspects of my personal, professional, and social life.

Only two months have passed, and I already find myself looking back at July wondering how I made it—and not only made it, but moved forward despite the challenges. That month has been added to the handful of periods in my life where I had to push through extreme adversity if I had any hope of accomplishing some long-term goals and where, looking back, I honestly don't know where I found the strength to do so.

This year will join the scattered handful of years that divide my life into segments separated by Before and After.

For the past few months I've felt off-kilter and off-balance, as if things were never quite right, because they never quite were. I've been patiently waiting for normalcy to return, knowing that if I waited long enough it eventually would.

Yet, even in the midst of these experiences, I don't think of this as a bad year. In reflecting—and I've been doing a lot of that lately—I've remembered that it's during these times of tormoil, whether positive challenges or negative chaos, that I've experienced the most growth. I would not be who I am today if not for these types of changes that I expereicned in the past and that I'm positive to experience again in the future.

It's these events that push me or challenge me or make me rethink everything that has happened in my life so far. Or that make me realize that i am way, way stronger than I sometimes feel.

Over the past week or so I've finally started to feel more normal. I've started to find the beginnings of some stable footing so that I have something to stand on as I move forward. Hopefully, I won't find this stable surface crumbling under my feet again any time soon.

But if I do, I only have to think back to these Before and After events that have altered my life in the past ... and that I've come through changed but unscathed. Each time I am faced by adversity and survive, and even thrive despite it, I get stronger. I reflect on what I've been through, and I'm better able to handle the next thing to be thrown my way. If I can handle that—if I can handle five of them at once!—then I think I can handle anything.

Friday, June 27, 2014

A Glimpse of Low Vision

"Oh, wow!" my brother exclaimed, "look at the castle! Do you see it?" My two brothers stood beside me outside the gift shop of the science centre, the older of the two peering over his sibling's shoulder, squinting at the book held at arms' length.

"I don't see anything ..." my youngest brother said.

"You need to look in opposite directions," the other advised. A few seconds later there were exclaims of amazement from the younger of the two as image the came into view.

"Can I try?" I asked.

"It won't work for you," my brother informed me. "You can't hold it close." But he held out the book for me and stared over my shoulder as I held it at arms' length and tried to make my eyes look in opposite directions at once. (This was exceedingly difficult considering I have both nystagmus and strabismus in addition to my primary eye condition.) I scrunched up my forehead, tilted my head and squinted, then closed each eye in turn, trying to make an image appear. I imagined a castle rising out of the surface of the page, thick guard towers anchored to the ground and triangular flags flying high in the breeze.

But I knew this was just my imagination, not the real thing. I handed the book back to my brother. "It doesn't work," I confirmed.

As a teenager, I often wondered what it was like to be fully sighted. Like my imagined experience of looking at a Magic Eye picture, I imagined what it must be like to look down a street and see objects a block or two away. I would often ask my brothers questions about what they could see. A nearby mountain looked to me like a section of horizon painted matte grey. No depth, no colour, just a bunch of dry, grey paint. I was awed when my brothers told me that they could see trees and patches where trails or ski slopes cut through the woods. I would challenge them to read print from a piece of paper held a metre away and laugh in amazement when they read words that I couldn't read even with the page held a centimetre away from my nose.

In grade five or six I discovered Jean Little, a Canadian children's author who was born legally blind and later in life lost the remainder of her vision. In elementary school I read volume one of her autobiography, Little by Little, which I subsequently read almost yearly throughout my childhood and adolescence. In high school I discovered part two of her life story, Stars Come Out Within, and in the pages of the book she described what she could see as a child:
I had never seen a skyful of stars on even my best nights. But I had always seen a scattered few, perhaps six, sometimes a dozen. I had seen more by looking through a monocular and had put together a mental image of the thronging brightness of the Milky Way.
—pp. 118-119
Reading this, I remembered a camping trip as a child where, having gone to bed before everyone else, I reluctantly crawled out of my sleeping bad when my mom called me to come outside to see something. Shivering, I unzipped the tent door and ducked through the flap. I stepped outside into splendour: more stars than I had ever seen in my life were flung across the night sky overhead. Dozens, maybe even hundreds of stars. It was breathtakingly beautiful and awe-inspiring.

I knew, of course, that my parents and brothers probably saw thousands of stars glowing in that sky. Yet, up until that point the night sky usually looked empty to me. On really dark, clear nights a group of us would sometimes walk up to the high school half a block from my house and lie in the field to look at the stars. During these occasions I might see one or two of the brightest stars. I'd lie with my monocular to my eye, my friends directing me where to look to find a few more that I couldn't see with my naked eye. Our view was always obscured by the city lights, but I knew that while I saw half a dozen stars with my monocular, on those nights my friends could see dozens.

As much as I wondered what good vision was like, the curiosity also went the other way. My family and close friends often had an uncanny sense about what I could and couldn't see, and made accommodations automatically. And yet, occasionally they would question me about what the world looked like from my perspective, and occasionally even after being around me for years they had misconceptions.

Several years ago, while in the car with my parents, I commented about how odd the clouds looked.

"I'm surprised you can see clouds," my mom said from the front seat.

"Of course I can see clouds!" I said indignantly. I couldn't believe that my parents had lived with me for more than a quarter century thinking I couldn't see such a thing.

Communicating what the world looks like from my perspective is difficult, because I have never had good vision with which to make a comparison. In medical terms my visual acuity is 20/600; yet, my vision is not the same as someone who is nearsighted and simply takes off their glasses. For one, the world doesn't look blurry to me much of the time. For another, although I am able to see more detail the closer I get to an object, I am never able to see as much detail as someone with good vision, even when that object is right up to my nose. In theory I see an object at 20 feet with the same clarity as someone with normal vision sees it at 600 feet, but what does this mean in real life?

Within arms reach, I actually see fairly well, at least from my perspective. Looking at a copy of Harry Potter and the Philosopher's Stone sitting on the desk directly in front of me, I can see the red at the top of the page and the red and green of the Hogwart's Express in the middle of the page, though I cannot read the writing on the green plaque. I can make out the vague semblance of a person in the bottom right-hand corner but cannot tell what they are doing. I can't make out any details of the background. I can't see the author's name. I can see the yellow of HARRY POTTER but not the rest of the title underneath.

But can I really see all this? I have, after all, seen this book a million times at much closer range (up to my nose) and under high magnification. In fact, I just looked at it under magnification before placing it in front of me to describe what I could and couldn't see. Would I be able to make out the semblance of a figure in the bottom right corner or the yellow of HARRY POTTER if I hadn't already known it was there?

The fact that I remember so much of what I see up close visually, and use it again when I encounter things in the future, leads a lot of people to think I have much more vision than I actually do. I will remember people in the office by the colour of their clothes and the shape of their body and the manner in which they move. Unless I am within arms reach of someone or slightly beyond, I can't make out any details of their face except maybe the colour of their hair and, possibly, if they're wearing glasses. I can't see facial expressions, or see see most nods or shakes of the head. I have no understanding of what eye contact feels like.

Once, when I was young I was sitting on the couch with my mom, leaning very close to her, when I suddenly burst out laughing. She was perplexed. Nothing funny had happened. When she asked, it turned out that I had been close enough that I had seen her blink. It was the first time in my life I'd seen someone blink, and the fluttering eyelid seemed hilarious to me.

As a kid I was a budding artist who loved drawing, writing, and crafts. I spent hours with pencils, markers, scissors, and paper creating pictures, stories, and all kinds of other creative projects. I'd work holding material so close that it often touched my nose. I cut with scissors a centimetre from my better eye. I usually worked so close that there was no room for my hand between my face and the page I was working on, and the frames of the glasses I used at the time for magnification became permanently deformed due to my forcing my hand into the space and making the necessary room.

I didn't usually think of how close I had to hold objects to see them until someone mentioned it. Standing behind me talking to a friend as I worked, I once heard my mom say that she often forgot I couldn't see until she saw me working on art projects at such close range. I went through a period where I was teased at school by kids who thought I was "kissing" objects when holding them up to my face. To this day, I sometimes get complete strangers in grocery stores ask if I'm smelling products, which has caused me to consciously try to avoid holding things close in this setting. For me, having a working distance of four or six centimetres is natural, but for most around me it's not.

At a distance my vision is much less distinct, even from my perspective. I have enough vision to orient myself to a small room I walk into for the first time, such as a doctor's office. Walking down the sidewalk I can see someone approaching me from a couple of metres away. Looking at a car parked across the street I can see its colour, its type, and (depending on the colour) where its wheels and windows are. I can't see door handles, stickers in the windows, the style of the car, or whether it has a flat tire. A person walking on the other side of the street appears as a moving splotch of colour. I can't see traffic lights, usually, or drivers who might be waving at me from within their vehicles. When I swim, I can see the lane markings at the bottom of the pool that indicate when the lane is coming to an end, and the flags strung across the ceiling to indicate the same—though the latter requires more concentration and is easy to accidentally miss, given its much lower contrast and having to spot it through often foggy and water-streaked goggles.

I found a piece of paper years ago while sorting through old files which documented my participation in adapted downhill skiing as a child. On it, someone had written that I could see as far as four feet in front of me. And, in a sense this was true, since I always got uncomfortable if my guide moved much beyond this distance—but the reason for this was not that I couldn't see them as much as the fact that I have no depth perception and therefore found it difficult to determine when they stopped or made subtle adjustments to their course (although they always communicated these changes verbally to me). My vision, like anyone's vision, does not simply stop at a certain distance. It gets less detailed and distinct, but I am able to see trees, buildings, mountains, clouds, and the sun and stars.

It is not true that those of us with little or no vision develop superior senses to those who are fully sighted. What is true is that we pay much more attention to our other senses, so much so that we often notice things that others don't. This is true for me and, as my mom relates, caused some consternation when I was younger and used to reach out and touch anything and everything, whether it was a toy or wet paint.

Many times, to those observing, I appear to have more vision than I do not because I can see something but because I am relying on subtle clues from other senses to supplement what I see. Whenever I reach for an object I'm using my vision to aim my hand, but I'm using my fingers to determine when I've reached the object and should stop moving my hand forward. When I turn on my computer the hum of its hard drive gives me as much information as the blue indicator light that blinks on. When I'm crossing a road I'm listening to the flow of traffic just as much as I'm watching it. When walking through a grocery store I pay attention to the smells coming at me from various aisles in addition to the colours.

I rely on visual cues a lot, too, but different cues than most sighted people. I can tell when I'm approaching many bus stops by the way the colour and lighting changes outside the bus window, even though I often can't identify landmarks from within a moving bus. The way the light speckles through the trees on the sidewalk lets me know that I'm getting close to the entrance of my apartment building more than the numbers bolted above its door. The shifting movement of colours on a TV screen give me clues about what's happening, even if I couldn't describe the visual scene to the person sitting next to me on the couch.

Memory, senses, and visual information all come together and play into what I can and can't see living with low vision, much more so than a single letter on an eye chart.

There are times, when I am highly familiar with what an object looks like, that I can "see" things that I shouldn't be able to. I can take a letter, for example, and hold it as close as possible to my eye, and if I squint and the print isn't microscopic, I can figure out if the letter is addressed to me. I can walk into a mall I have been to many times before and make a beeline for a particular store. I can scan a shelf for a well-known product and spot it from half a metre away without any assistance. But when I do these things I don't really see these objects. More often than not I see a fuzzy shape or some mashup of colours that I happen to know, form much past experience, represents a certain word or logo.

Yet ... what I've spent the last few paragraphs describing don't really describe what I see. They describe what I see when my full attention is on something, and when lighting conditions are near ideal. Throw me onto a congested downtown sidewalk and I may only discover a bike rack when my cane clangs off its surface. Put me facing the sun without the aid of sunglasses and the resulting glare can all but obliterate nearby people, cars, buildings, and landmarks. Put me on an unfamiliar footpath as dusk falls and I may rely completely on the tactile feedback of my cane to keep me from straying off into the grass.

Occasionally I'll have a friend or extended family member ask me if I'm ever sad about what I can't see. When I was a teenager I read Sight Unseen by Georgina Kleege. In the introduction, she describes how writing the book made her aware of how little she saw, and also aware of how much information sighted people take in visually:
[...] I knew I could see something—light, form, color, movement—and assumed that this was close enough to what other people saw. As I wrote this book and forced myself to compare my view of the world with what I imagine a normal eye sees, what I learned astounded me. [...] It might seem that this discovery would lead to sadness—what else have I been missing all these years? In fact, it has inspired a kind of perplexed wonder—what do sighted people do with all this visual detail?
—pp. 2
Like Jean Little, I instantly felt a connection with Georgina Kleege. Here, again, was someone who understood what I experienced. And not only what I experienced, but how I felt about it. I have never been sad about what I might be missing. Frustrated sometimes, perhaps, when I can't see something that would otherwise be useful to see. But never sad. Like Kleege, I merely feel a fascination about how much information someone with 20/20 vision must be taking in, and how they can possibly process it all. But then, they probably wonder the same thing about me, sometimes, processing multiple incoming streams of sensory information and integrating it into an understandable whole.

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.

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.