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. 😉

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.

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’t 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! 

admiring our differences: me & type 2

May 8, 2011


When I was diagnosed with juvenile diabetes at age 7, it was 1980 and I lived in one of the larger Montana towns (an oxymoron all onto itself, as the whole state has less than a million people). The diabetes education classes put on by the hospital were full of people my parents’ ages, and I was taught alongside of them in exactly the same manner. We learned diabetes exchanges and signs and symptoms of being in ketoacidosis, and the rest of the class would talk together and bond at breaktime. If any of them spoke to me, the common first question was “you’re so young–are you on insulin?” When I said yes, I got the requisite “oh, you have the really bad kind” or “I could never give myself shots” or even “I’d die if I had to do that.”

At the same time, the awful endocrinologist I saw from the time I was diagnosed until I went to college started with the “you could really stand to lose some weight” advice. (Hindsight being whatever it is, I now know there are about a zillion different things Dr. Crappy could have said that might have been helpful to me, along with acknowledging that while I may have been a couple pounds more than ideal for managing type 1 diabetes, I was not obese.) My mom, caring for me and only wanting what was best for her diabetic daughter, and wanting to follow doctor’s orders to the best of our ability, signed me up for regular dietician appointments and even weight loss programs at the hospital. There I met even more middle-aged or older people with type 2 who said a lot of really hurtful things (even if they didn’t realize it) about me, my type 1 diabetes and/or my weight, and helped me start down a harmful path of really terrible body image, learned helplessness, and serious denial that I could do anything about either managing diabetes or my body weight.

So there’s my type 2 damage. Then when I was in my mid-20’s, I made a friend who was a hard-core volunteer for a non-diabetes-related nonprofit where I worked. She was forty years my elder, but acted like she was exactly my age. She was a talker, like me, and loved to meet new people. We started getting together for lunch and chatting every so often. She noticed that I had an insulin pump and asked me about it. She shared that she had type 2 diabetes, which she was trying to manage with diet, exercise and metformin. We talked about both of our diabetes (mis-) management issues. We bonded over (too many) doctors like Dr. Crappy and other misinformed and unhelpful medical providers, and she rejoiced with me when I found my first Dr. WonderfulEndo. She didn’t make assumptions about what I was dealing with, and I learned not to do so either when it came to her life with type 2.

My friend E. did something that no other type 2 had done for me before: She asked about my experiences with type 1, listened to my answers, and bonded with me over the similarities, both negative and positive, with her type 2. She was the only person with whom I spoke at length about diabetes for months at a time, as I was out of touch with my diabetes camper and counselor BFFs during my 20’s, before the internet and Facebook were really cooking. She talked with me about how various exercise and food combos made her feel; how doctors and dieticians who were condescending and know-it-all about diabetes were almost worse than the ones who were ignorant; and my own fears and struggles with food and weight (all that early education and “awareness” having gained me about, oh, 65-70 pounds since high school…along with whole ton of shame and stigma and self-hatred). We shared about our all-too-common frustrations with insurance (or lack thereof) and HMO plans, medications that did one thing when they were supposed to do another, and HbA1c results that didn’t match the amount of time we were spending on diabetes. She loved hearing about my new pump or meter technology, and I cheered her on when she exercised at her gym or took a new movement class.

E. was an inspiration to me, and one of the best people I’ve ever known, with or without diabetes. She died a few years ago after fighting colon cancer for several years. I miss hearing her voice on the other end of the phone, asking “So how’s your diabetes going? How have your numbers been? Have you had any Chick-Fil-A lately? When did you last see your dr?” She taught me that people with types 1 and 2 have so much more in common than we are different. We just need to be open to asking questions about each other’s experiences, and gently listening to the answers.

(Love you, E. My last HbA1c was 5.8, can you believe it?!)

Note: I’m sorry to say that I haven’t read a ton of blogs by people with type 2–yet–but I must say that Bob Pederson’s t minus two blog is just what the web address says: Worth every penny. Also insightful, funny, thoughtful, and real…very much like life with any type of diabetes. I’d refer E. to Bob’s blog (and his featured blog at Diabetes Daily, too). She’d like him as much as I do.

just lime, no coconut

May 4, 2011

Today was pretty much the first day of summertime temps in our part of Northern California–about 85 degrees this afternoon(!!!), and still plenty hot this evening until the sun went down. A few minutes ago, my #bgnow was 51 mg/dl. Between my low BG and the heat, that meant it was time for my favorite summer treat: Trader Joe’s Frozen Lime Fruit Floes!

A not-very-helpful endo and similarly not-very-useful dietician who I saw a few times last summer tried to get me to quit the amazing frozen lime floes. Saying things like “You’ve got to stop eating these–they do nothing for you” is a truly wonderful way to send me straight to the store and clear out the case of all such product. Not so much with the successful there, medical folks. When it’s crazy hot and sunny, too hot for me to think or care about what the meter’s reading, and something cold and tasty with a label that says just 16 carbs per floe is sitting in front of me, I’m not going to be substituting celery stalks. That’s for sure.

In the last year, however, I have learned that it doesn’t work out well if I just hork down several of these in one sweaty sitting. Or if I enjoy one but forget to bolus (or choose not to) because you know, 16 is barely any carbs when you compare it to the ginormous frozen cupcake I COULD be eating, right? Sometimes it doesn’t even work out well if my BG is around 150 mg/dl, AND I carb count AND bolus beforehand. So no thanks to last summer’s endo/dietician team, but I have learned that these gorgeous examples of lime heaven can affect me, and I need to try to manage that if I’m going to partake in these lovely things.

So I eat them when I’m lower, low, or really low and it’s super hot. To get really precise, I love to have one if I’m 100 mg/dl or lower and it’s 80 degrees or higher; I can usually deal pretty well then. But there is no specific number to express how much I love them–all I can say is YUM, and point you to the nearest Trader Joe’s to get your own to enjoy!

These floes are a beautiful thing! Sweet but not overly sweet, solid but not rock hard, frosty and pretty light green, and just the right amount of lime…yum. yum. yum.

Of course, I didn’t have a CGM last summer, so I couldn’t see exactly what the floes were doing.  Now I use a CGM, and Dex is currently completely spazzing out at 189, but when I just tested again, BG was 109 mg/dl. Sigh. Looks like the floes and I have some more experimenting to do this summer. At least we’ll have a good time gathering the data to do the analyses…

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