Friday, December 20, 2013

One of Those Days

One of those days that, even as I go about my daily business of work and errands and chores, diabetes manages to steal. One of those days where words fail, because there's no story to tell, since it's not just one day but a representation of many.

The lethargy of blood sugar levels that stay relentlessly high. The vaguely queasy feeling that accompanies glucose and ketones. The monotony of pulling out the meter and obtaining that tiny bead of red every hour or two. The whirring thoughts, running through pump, site, insulin, illness, what else could it be. The shots, the site changes, the pump refills. The corrections, ad nauseam.

Intermingled with everyday life. Phone calls and reading and typing, interrupted by finger pokes and pump programming and shots and Ketostix. Interacting with friends and colleagues and strangers, all of them completely missing the undercurrent of the diabetes battle that is raging.

So normal to anyone watching. But under the surface, one of those days that diabetes rules.

One of those days that, ultimately, is best summed up in a picture rather than words. (Except for the alt text describing the picture, of course.)

Picture of a pump in the left foreground with a portion of a keybard next to it and the tray of a video magnifier in the background. Pump screen displays: Alert. HIGH BG. Treat high BG. Check site. Check ketones. Monitor BG.

Sunday, December 1, 2013

Medical ID: Some History, Some Thoughts, and A Brief Review

I've had 911 called for me twice during my lifetime. I was in grade six the first time this happened, and it had nothing to do with my diabetes.

My class was playing outdoor soccer. Unable to play safely due to my vision, I was on the playground swing set chatting with my educational assistant, swinging back and forth and pumping my legs as hard as I could. As a kid I always had a goal to swing as high as possible, despite the slight nervousness nagging at the back of my throughts that the swing might wrap around the metal pole supporting it if I went too high.

For reasons we never did determine (some sort of momentary loss of consciousness was suspected), when I had reached the apex of one of my pendulum swings I suddenly let go of both chains.

Predictably, I went flying. I soared a good 20 feet across the playground before landing. To this day I remember seeing a swirling mass of grey below me, time going in slow motion, not quite knowing what was happening and at the same time thinking, "I know I'm about to get hurt ..." and praying, "Please, God, don't let it be bad."

I don't remember landing. I do remember looking up and hearing my aide cry out. The next thing I remember is walking towards the school. My aide jumped off her swing and came bolting towards me, clamping her hand over my forehead and calling for help. As we continued to walk towards the school she talked to me, saying I was okay. I didn't understand what she was talking about until she momentarily lifted her hand from my forehead.

Her entire palm was completely red.

She clamped her hand down almost as soon as she had moved it, but in that split second I suddenly panicked and burst into tears. I had never seen so much blood. When we reached the school doors I wasn't even brought inside, but sat on the stairs while someone brought out a giant gauze pad. The entire pad turned red in a matter of seconds and was exchanged for another, and another. Once the bleeding was controlled enough that the gauze wasn't soaking through immediately, I was ushered into the office.

I didn't know it then, but my mom was being called. And so was 911. When the paramedics arrived I was mostly concerned with trying to stop crying and pulling away when they tried to clean the wound, which stung like mad. I sat in the office and could hear the bustle of my entire class outside, trying to peer in at me. The paramedics were mostly concerned with the possibility of a head injury.

They questioned me incessantly. Did I know where I was, who I was, what day it was, did I remember what happened. Then, they began to talk about my eyes with concern.

"Her eyes always do that," the school staff around me informed them.

"Are you sure?" one of the paramedics asked.

"Yes, she's legally blind; her eyes have always moved like that."

They were not convinced. "I don't know ..." one said as he looked into my eyes with concern.

I didn't have a good sense of the passage of time, but they spent a lot of time discussing my nystagmus. My mom got to the school just as I was being loaded into the ambulance. On the way to the hospital, the paramedics asked her if I had always had nystagmus, and she confirmed that I had. They advised her that, given my relatively complex medical history, I really should have a customized medical ID.

I spent the next few hours in emergency, where I remember feeling sick to my stomach, my blood sugar crashing low, getting annoyed at the oxygen mask covering my face, and the doctor stating that I didn't have a skull fracture but did have a mild concussion, and was lucky I hadn't broken my neck landing head-first like I had. Seven stitches later I went home to spend the rest of the day lying on the couch. The following morning I woke with my eyes swollen shut and was back in emergency. When I returned to school the next day I was a huge celebrity with the other kids, having been taken away by ambulance and leaving a puddle of blood in the middle of the playground.

And so it was that, at the age of 11, my parents signed me up for MedicAlert. They had bought me a medical ID bracelet when I was diagnosed with diabetes two years earlier—a bulky, gold bracelet with a giant red medical logo that said simply DIABETIC on the underside—that they had purchased at the drug store and made me wear, even though I hated it. After the swing incidence, they decided to take the paramedics' advice and get a bracelet that could be engraved with a customized message.

I remember standing in the kitchen having my wrist measured as my mom spoke on the phone with the company. When the bracelet arrived in the mail I thought it was far more appealing than my previous bracelet, and wore it without complaint. After clasping it on, a MedicAlert bracelet didn't leave my wrist for the next 20 years.  I grew familiar with the weight of the bracelet around my wrist. I fiddled with the engraved tag, rather than my hair or nearby objects, when I was nervous or bored. The soft clink of the chain and tag against the desk surface as I worked because a subtle soundtrack to my years of school. In high school I had a friend who also wore a MedicAlert bracelet. We were the only two wearing them in our social circle, and I felt a sense of solidarity with her. Periodically, we would flip our bracelets over to compare the engravings. Whenever my bracelet was removed my wrist felt almost foreign, and I would have strange phantom sensations of the bracelet's weight and touch against my skin even in its absence.

Then, in early 2013, the bracelet broke. I'd had my share of bracelets break over the years, virtually always from swimming, where I would hit lane ropes with my wrist. Often, I would take it to a jewellers the same day to have the chain replaced. But this time around, the chain broke at random while I was going about my day, and I lost the tag to the streets or maze of public transit. I knew that I should call MedicAlert to get a new one. But I was always "too busy" and put it off. I went for nearly a year with no medical ID bracelet.

Several weeks ago I was riding the train when I started to feel a bit low. I tested at 3.3 mmol/L and popped two glucose tablets in my mouth. Twenty minutes later I was picking up groceries when I suddenly began to feel horrible. Within minutes I went from feeling fine to feeling lightheaded, the bustle of the store around me became muffled, and a vague tingling sensation spread through my entire body. Every time I took a step I felt like I might topple over. I tested and despite the two glucose tablets I'd taken earlier, I had dropped to 2.1 mmol/L. As I stood treating the low with five more glucose tablets, I closed my eyes and willed myself to feel better, at least enough so that I could walk without falling over. It took a good 20 minutes for my blood sugar to come back up and even longer for me to feel completely better. During those 20 minutes I was very aware that, should I collapse, I had no medical ID bracelet.

And so, I took the plunge and not only got a new medical ID bracelet, but switched brands for the first time in 20 years. I had been a member of MedicAlert since long before they charged for membership, and I wasn't at all sure I wanted to pay $60 a year for one. I also wanted to be able to order bracelets online, which I couldn't do with my (now non-existent) free membership. So, I ordered from Lauren's Hope instead. It took me a long time fiddling with wording to find something that fit and looked decent. I picked a grey medical emblem, because I like to be discreet. I ordered the cheapest chain possible, figuring that, if I liked it, I could order nicer ones later on. I also ordered a waterproof sports band with inserts that could be written on, so that I could wear them when I swam and not risk losing yet another bracelet to the pool.

When the bracelets arrived, I'll admit that I didn't immediately love it. I didn't dislike it, either. I'm picky about changes, especially after 20 years! The engraved tag was bigger than what I'm used to with MedicAlert bracelets. It's more reflective and shiny, too, which put me off at first, because I felt like it would draw attention to it. But, after a week of wearing it, I've grown to like it. It's very lightweight, and the grey medical emblem is pretty discreet. I like that, if I need to, I can order a new tag for around $25, and that I can order more chains to suit whatever mood or social situation I may be in.

Close up of medical ID emblem

The sports band is neat, too. It's a fabric and Velcro bracelet that hold medical symbols and "Alert Inside" on the outside and contains two small waterproof inserts that can be pulled out when the bracelet is removed. I can't judge the quality of this since I haven't used it yet (although the font on one of the inserts did smudge the moment I touched it), and I've fabricated my own inserts on the computer, since the ones the bracelet came with are way too small for me to write in. But the bracelet is comfortable to wear and, I think, would be very noticeable to any first aid staff or paramedics, especially while swimming.

Interestingly, I've discovered in the past week of wearing a medical ID bracelet that I think the bracelet is helpful in ways beyond simple identification in an emergency. Over the past nine months of not having one, I've sort of missed it.

The bracelet is a symbol that the wearer has one or more serious medical condition, and some people hate making that information obvious to anyone who looks at them. Part of the idea behind bracelets from companies like Lauren's Hope is that you can turn the bracelet so that the medical tag is hidden and the pretty bracelet is the first thing people see. But I don't mind it being visible. I'm used to symbols, including any positive or negative connotations they may dredge up. I've used a white cane since I was eight, and over the years have become comfortable with how others might react or what they might think but leave unspoken. In some ways, the bracelet acts as a similar symbol, and in some ways can help make some otherwise awkward situations easier for me.

I have written before about how hard it can be to turn down food. But, somehow, I find the bracelet makes it easier for me to stand up for myself under peer pressure. The other day we had a cake at work to celebrate November staff birthdays. Someone went to hand me a plate, and I shook my head and said, "No, I'm not having any, thanks."

Surprisingly, the person simply handed the plate to someone else. As we all sat around the table, everyone eating except me, someone across from me piped up and said, "Is it because of the sugar that you're not eating it?"

Well, technically it was because of the carbohydrates, but I simply said, "Yes, that's why." No one even attempted to cajole or pressure me into having a piece, which I think is a first for me in this office.

Maybe it's simply that my co-workers are beginning to learn that I typically don't accept cake. But when I refused (which I had made up my mind to do even before showing up to the staff room), I did so more firmly than I usually do. As I sat there with the cake being cut and plate coming ever closer, I fiddled with my bracelet in my childhood nervous habit, and the weight of the metal on my skin was like the reassuring touch. Yes, the bracelet confirmed, you are doing the right thing for you health. Sometimes, that little reminder at the right moment is what makes the difference between me accepting and refusing a high-carbohydrate treat.

And who knows, maybe the person handing me the plate caught sight of the bracelet, too, and was reminded about why I might be declining.

I'm glad to have a medical ID bracelet back on my wrist. Whether it's to communicate with paramedics during a true emergency, or just as a reminder to myself and others that I need to take my health seriously, it's been with me for almost my entire life, and is what I'm most comfortable with.