arduously, painfully boring d #hawmc day 18

April 18, 2012

“There is only one thing that Lena could do. She could be so arduously, painfully boring that Effie would leave the next day. And that, at least, came naturally.” (Ann Brashares, Sisterhood Everlasting, p.143)

Type 1 diabetes is naturally arduously, painfully boring. It bores me to tears. From the day I was diagnosed on June 13, 1980, through my pre-teen, teenage, young adult years, and well into my 30’s, it bored the daylights out of me. Before I was exposed (and thrilled by, believe it or don’t) the data of my diabetes experience, I could not have cared less about doing all the things associated with caring for myself, over and over and over. Painfully boring! And it never ended! All of the monotonous things to care for myself STILL never end, but at least I’ve found some aspects of it that make me wonder…and wondering makes me question…and questioning makes me collect and compile and describe and list the data, and try to analyze it so I can tweak my care regimen and improve, sometimes. And that is good.

Some really rough numbers to illuminate the arduous and painful boringness of my type 1 diabetes:

I started testing my blood in about 1982. Let’s use an average of 3 blood tests/day from 1982-1990; 2 tests/day from 1990-96; 3 tests/day from 1997-2009, and 15 tests/day from 2010-present day. That’s about 41,000 blood tests. Just thinking about it puts me to sleep!

Incidently, it would also be 41,000+ lancets for each one of those blood tests IF I changed my lancet every time I tested. But I don’t. It’s too boring. ūüėČ

Between the many years of hardly any or just flat out no blood sugar control, and the last couple years of attempted very tight control, my blood sugar is low–less than 70mg/dl–probably an average of about once a day. Over the last almost-32 years, that’s roughly 11,680 lows that needed treatment with carbohydrates. We’ll just ignore all the times that I overtreated lows due to my body feeling like it needed to inhale everything with sugar in my reach, and assume treatment with 15 grams of carbohydrate for each of those lows. That’s 175, 200 grams of carbs.

Okay, that number might be a little interesting (or gigantic and disgusting if you think about the entire amount at once). But the need to constantly feed, or treat, the lows, is boring. Especially since it works best for me to treat every low with the same kind of sugar (juicy juice apple juice box) so that I can track the results. Insanely boring, is what that is.

On the other hand, searching for new or different food to give me 15 carbs to treat my low is arduously boring and causes a whole lot of pain too. It takes too much energy to try and think of something else that works, and works well.

I’m just going to SWAG this next one and say that I’ve probably spent close to 384 hours (1 hour/month x 12 months x 32 years) on the phone with insurance companies and durable medical equipment/supply company billing departments, arguing about ¬†prescriptions or pump supplies or test strips or insulin or endocrinologists or eye doctors or other services that were covered, at least to some extent, by my insurance coverage at that time, but billed incorrectly or just not billed to insurance, or not coded correctly, or just forgotten along the way by the insurance company.

Zzzzzzzzzzz…sorry, so boring. Again. And neverendingly so.

I feel really lucky that within the last couple of years, I’ve realized that what’s interesting–at least to me–is finding the trends in my diabetes numbers. What time of day am I high? Low? How many days in a row? But in order to do that, I have to go through the boring stuff and remember to test, and fill in my logsheet, and take time to look at it and figure out which options might work.

Remembering the interesting parts, and taking the time to find them interesting, helps me not blam my head against the wall with the arduously painfully boring d-stuff.

Cupcakes, glitter, unicorns and rainbows help too.

This post was for Day 18 of wego Health Activist Writer’s Month Challenge. Open a book.¬†Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.

d-convo (#HAWMC day 8)

April 8, 2012

smartDpants (professional, 39 year old woman with type 1 diabetes) sits in a grant-funded project meeting with about 100 other people she has not met before today. Second by second, the large institutional clock at the front of the room ticks away while the project leader speaks to the group.

It is almost noon. smartDpants wonders what her blood sugar is and when she will get to eat lunch.

A woman who looks like she’s in her early 60’s enters the room and looks for a seat. There is an empty seat next to smartDpants. The older woman walks over and settles down in the empty seat.

smartDpants reaches down to her work bag on the floor and pulls her purse into her lap. She removes a OneTouch Ping blood glucose meter, her poker, and a bottle of test strips. She puts a test strip in the meter, pokes her finger, and puts a drop of blood in the strip.

As she has done the last 41,820 times she’s tested her blood sugar, she licks the remaining blood off her poked finger.

The meter reads “86.”

The older woman leans over to smartDpants. As the project leader keeps speaking, the older woman looks kindly at smartDpants and speaks quietly to her.)

Older woman: How are you doing this morning?

smartDpants: I’m doing well, thank you.

(smartDpants thinks to herself: What is she talking about? Just how am I doing in general? Or did she see my meter? Is she talking about my diabetes? Or is she just exchanging pleasantries? How much should I get into this with her? I should really be listening to the speaker. Plus, when are we breaking for lunch? How much insulin do I have on board?)

Older woman: My son has diabetes. ¬†(Glances at the meter.)¬†He doesn’t do so well with it, though. He’s not comfortable with testing in public, and he doesn’t test much at all.

smartDpants: It’s hard to take care of it all the time. I’ve had diabetes for 31 years. I haven’t always done so well with it, and I spent many years barely testing at all.

Older woman: Good for you for testing and taking care of yourself. Keep up the good work. (Smiles.)

(About 10 seconds later, a man in his 60’s, sitting on the other side of smartDpants, points to the MedicAlert bracelet on her left wrist.)

Older man: What’s your bracelet for?

smartDpants: I have type 1 diabetes.

Older man: Diabetes? I have diabetes too–type 2. I’ve had it for about fifteen years.

smartDpants: Oh, really? I’ve had type 1 for 31 years now.

Older man: It’s one of the hardest things I’ve ever done.

smartDpants: I know. Me too.

(Older man smiles at smartDpants. A few minutes later, the group breaks for lunch. smartDpants is happy to not have to break out any juicy juice boxes or glucose tabs during the meeting.)

True confession: this d-convo happened last month, but it was such a cool experience that I wanted to be sure to capture it–and where better than this blog, for this post? It was fun to have those 2 moments of connection about diabetes with strangers/allies in the struggle.

This post is for wego Health Activist Writer’s Month Challenge. The best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

Want more Health Activist Writer’s Month Challenge posts: Check out¬†wego Health on Facebook!

time capsule (#HAWMC day 1)

April 1, 2012

For this first post for wego Health Activist Writer’s Month Challenge, I am pretending that I’m¬†making a time capsule of me and type 1 diabetes that won‚Äôt be opened until 2112.There is so much¬†paraphernalia¬†associated with my t1d life, and most all of it absolutely necessary, that I hope the time capsule has LOTS of room! Here are just a few of those necessary items:

One Touch blood glucose test strips; sharps container; apple juice box (4.2 oz./15 carbohydrates); Tegaderm tape; cute little Clinique GWP bag for d-supplies; Dexcom continuous glucose monitor sensor; SkinTac extra adhesive; lancets; insulin pen; poker; insulin pump reservoir; OneTouch Ping blood glucose meter; Novolog insulin; Dexcom Seven Plus continuous glucose monitor; Animas Ping insulin infusion pump.

(do you love the other juice boxes on the nightstand in the background?)

The Most Absolutely Absolute Necessities

Of course I forgot to include a few other absolutely necessary items in the photos: diet coke (!!!), calorieking book/app, and glucose tabs, sure.

Finally, my most recent hemoglobin A1c results, on a big explanatory handout from my endocrinologist, dr. wonderful. I just got it last week, so it’s at the forefront of my d-thinking.

March 2012 HbA1c

I hope no one in 2112 has to know what an HbA1c is. I have no idea what people in 2112 will think of all the d-stuff in my time capsule when they find it…the one hope I have is that they look at it from an archeological perspective–that diabetes will be a long gone historical lesson by that time, and none of the items that are absolutely necessary to my life are necessary anymore. Cure by 2112? Yes. Please. Sooner? Even better.

This is Day 1/Post 1 for the wego Health Activist Writer’s Month Challenge (#HAWMC). Woot!¬†

belated saturday snapshots for Dblogweek

May 17, 2011

This weekend, we took a visiting college friend who had never been to San Francisco into the city to do all kinds of touristy things that are fun for locals too (even if they won’t admit it). Even though it’s been a few years since we lived south of the Golden Gate Bridge, the crazy urban details that mess with t1d management come back immediately.

It’s damn near impossible to know how much, how sporadic, or exactly how intense the city traversing is going to be, but it’s always there: The long slow incline up certain hills in Chinatown; insane inclines like Lombard and the south end of Masonic; the quick sprint needed to grab the 8x Stockton bus; and the power walk around Stow Lake in Golden Gate Park.

I’d never “done” the city with a continuous glucose monitor before. It certainly helped, but I still had to guess how much to decrease the temp basal rate and for how long. I also had to SWAG a lot of the awesome food we had, from the yummy chicken veggie skewers in the Haight to the fresh sample at the fortune cookie factory, from the delish Ghirardelli chocolate at G. Square to the comfy clam chowder in a Boudin sourdough bread bowl. Despite my best efforts, I still had to chug the juicy juice–while riding the cable car and hiking to the awesome parking space we found on Lombard, among other places.

Anyway, we had a touristy kind of ball and so did our friend. Of course I took a ton of photos, a couple of them with the D all front and center. First time I’ve ever done that, and it was kind of cool.

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