Monday, May 10, 2010

A Day In the Life With Type 1 Diabetes



I've decided to participate in the spontaneous Diabetes Blog Week, which my friend Karen at Bitter-Sweet suggested last week (catch her post here for the details). To have a look at the other diabetes bloggers who are participating, visit here.

I first met Karen face-to-face a few years ago at a diabetes blogger meetup in New York. We had an instant bond of sorts not only because of life diabetes (as if we needed any other), but she happens to live in a town that's literally a few miles from where my parents live (and where I grew up). If I recall correctly, she also graduated from the same university as I did (of course, it was known as a college when she and I attended, but a few years ago, they became a full-fledged university). Anyway, the main reason I agreed to do this was because there are really no rules, no blog length, nothing other than a suggested topic du jour So without further delay, here is today's topic, along with my posting on that subject.

Monday 5/10 - A day in the life ... with type 1 diabetes. Take us through a quick rundown of an average day and all the ways in which diabetes touches it. Blood tests, site changes, high and low blood sugars, meal planning, anything that comes along. This can be a log of an actual day, or a fictional compilation of pieces from many days.

This posting will likely garner two types of responses: 1) for people who live with diabetes (and/or their caregivers), they may nod their heads in agreement with different components, while 2) for anyone who have no personal connection to life with diabetes (including the many, many, many doctors and diabetes educators who may have extensive training in the subject, without having a second of personal experience or even a clue what life with their prescribed treatment entails other than the over-simplified basics they outline). For the latter group, I hope this provides just a glimpse at the day to day s#!t people with diabetes (PWDs) must deal with until we die. (Or until some vast improvements are made to prescribed treatment protocols.)

On any given weekday, I usually get up pretty early to get ready for work, not unlike millions of other Americans who do the same. But the similarities end there. To begin with, my morning ALWAYs, without fail, begins the exact same way it ended the night before. By cutting myself with a razor-sharp device called a lancet in order to make myself bleed enough to conduct a blood glucose test, which is as barbaric as it sounds because we haven't done any better than that yet. The results nowadays are quick, usually within 5 seconds or so, but my day has only about a 60% chance of starting out great -- the remainder of the time, the number is either too low which is pretty easily fixed by eating one or more glucose tablets to raise the number to an acceptable level (although if it drops too low, I might not be coherent enough to do that) before I can even begin the rest of the getting ready routine.

On the other hand, if my number is too high, then my morning is effectively ruined, and I am likely to be incredibly p!$$ed off, which is ironic, considering I followed all the rules of good diabetes care and usually go to bed with good numbers for a PWD, but there are more things that can influence blood sugar levels than insulin, exercise and food intake, which are the ONLY elements a person with type 1 diabetes actually has control over. Pattern recognition helps me avoid this many times, but if there's one thing a person with type 1 diabetes must adjust to more than anything else is that diabetes math means that 1+2 DOES NOT always = 3, sometimes it = 5, sometimes it equals 10, and sometimes it = 0.5. The very notion of calling this diabetes CONTROL is frankly one of the medical profession's cruelest jokes (and biggest lies), and I am being way too kind when I call it complete bullshit that anyone can expect someone to gleefully do this day after day until they die -- its really bulls#!t. Control means absolute power over the outcome, and I have yet to meet anyone with type 1 who actually has control of their diabetes. Why does it ruin my morning? For one thing, I'll need to dose insulin to bring the number down before I can even have a cup of coffee, and although patent-protected, genetically-engineered insulin-like molecules known as insulin analogues are supposed to start working within 15 minutes, they never work that fast for me ... I have to wait an hour before it BEGINS to come down, and it won't be normalized for close to 3 1/2 hours. No coffee (that would send the numbers even higher) which really ruins mornings for many people. No food for hours, even if I'm starving.

Only then I will be able to jump into the shower and proceed with the commute to work (I am now counting down to when I can do like mostly everyone else in the largest U.S. metropolis where I live does, and rely on public transit to wisk me into work -- it's just 8 weeks away ... wooo hooo! Until then, I rely on traffic-choked freeways that are overcrowded and often, falling apart with holes, car bumbers in the break-down lane (where one actually exists) on what has been dubbed the world's longest parking lot. But that's a tangent to the topic du jour. All of this happens before 8:00 AM EST.

When I arrive at work, my day is a lot like anyone elses; I work in a consulting firm, so some days are chaotic, others are quiet depending on projects we are engaged to do, people's travel schedules, etc. However, my colleagues waltz into the office at random times, so I find my mornings to be by far my most productive hours; the phone hasn't yet starting ringing, and the interruptions are fewer. I actually like working in the morning because of that, plus by that time, if I haven't been able to eat, I can actually do so from my desk at work. The funny thing is, I'm by no means a morning person, and for me, I'd much rather sleep late then get up early and face the day with a cheerful smile on my face ... in my dreams, maybe!!

Usually, by 1:30, my uninvited friend and co-worker, also known as type 1 diabetes (which has overstayed its welcome by more than 31 years for me) starts to makes itself known. Usually, I need to eat lunch by then or I'm ready to crash. I might not be hungry, but I'm still obliged to eat something, although for me, often a cup of soup might work, other times, I'm really starved and might need something more. I would really like to enjoy one of life's simplest pleasures someday, which is to be able to eat without having to premeditate bolus meal doses, time-activity profiles of insulin, or anything else except maybe calorie counts.

By afternoon, I normally have my day filled with various things I have to do before I can call it a day. That may consist of follow-up phone calls, perhaps a meeting and/or conference call, seeking out deliverables from colleagues, etc., etc., etc. By 6:00 PM, I'm done with work, unless I have a deadline that I need to stay to finish. At present, I still work in the suburbs, so I might stop by the large supermarket located down the street from my office to pick up any grocery items I've run out of. That usually consists of fresh produce items which are both more plentiful, fresher and much less costly in the suburbs than they usually are in NYC. Even though I live fairly close to a supermarket, it is so overrun with shoppers that the store often runs out of items unless I arrive first thing in the morning.

My evenings are pretty calm; make dinner, watch the evening news, possibly catch something on TV, and maybe catch up with some follow d-bloggers on Twitter before going to sleep for the evening. I no longer wear an insulin pump, so I use NPH overnight (by choice) because I actually require a bit of a peak (I still would prefer Lente, but that's a separate diatribe) and have had absolutely horrendous results with Lantus, which works way too long into the next day, yet ironically still failed to cover my digestible proteins consumed with dinner. Of course, with generics looming in the not-too-distant future, we might actually see a resurrection in the Lente series, which most doctors considered superior to NPH. The reason: NPH works well in premixed insulin varieties sold primarily to the type 2 audience (not that premixed gives them better glycemic control, but it's easier for primary care doctors to prescribe, thus the world's worst medium-length insulin is the only one now on the market. I'm not at a point where I'm ready to reconsider pumping because I went through a HUGE hassle with my insurance company just to get my test strips covered, and don't have the stomach to endure another lengthy appeals process on a pump, even if the pump company does all the work. It's just not worth the effort for me, as when I did wear a pump, I did not have better glycemic control. Whatever ... the bottom line is that this crap is par for the course in the day of the life with type 1 diabetes.

I have come to the realization that I will be denied the simple pleasure of ever being able to eat without pre-planning, an innocent pleasure that the average person has absolutely no appreciation for unless this disease is cured. Frankly, given how long treatment advances take to get approvals, I may never see it. But if one believes in karma, then ME and my fellow PWDs will be able enjoy this forever more in the afterlife, while everyone else will have to suffer with this bulls#!t (of course, I could be paying for transgressions in a previous life with this today) but as long as I have the ability to influence the day to day numbers for life with diabetes, then I also plan to use my influence to fund research towards a CURE (that means funding for the JDRF or the DRI, two organizations with an explict goal of eradicating type 1 diabetes.

5 comments:

Rachel said...

Interesting to see how your day compares with my husband on MDI!

George said...

You are so right. Diabetes in Control? WTF?

Karen said...

Yup, it will always be a College to me, even if it is now officially a University. :)

I realize now that my big flaw with today's topic was to ask for an "average" day with diabetes. After 30 years you'd think I'd remember that there is no average day - even if you do the exact same things the results can be so different. And that's the very thing that people who don't have diabetes themselves can never understand . . .

Jesse said...

Wow, poking yourself with needles multiple times a day! You are brave

Scott K. Johnson said...

Isn't it crazy how our first BG check of the day can set the tone? I hate that sometimes!.