17 years

June 10, 2012

to the love of my life…

my forever partner in all SORTS of crazy…

my co-mama in the growing and raising of Ms. Diva…

the best person to ever happen to me…

you were Type Awesome before we even knew what that was.

*****

type 1 diabetes is not fair for or decent to you, either.

when we met, I ignored the crap out of it.

I told you that I had it and what it was, because that’s what I do.

but that didn’t mean I took a tiny bit of care of it, or of myself.

this broken pancreas gets in your way, too.

thank you for not letting it scare you out of our life.

*****

you are here with me in every moment of d.

all of the annoyance, fear, pissedoffedness, anger, resentment

of the challenges and pitfalls d brings our way.

AND, more recently, in the joy of the “LOOK at this 24-hour/7-day/30-day/90-day average!!!!!!!”

the amazement of the first A1c of 6 or below

of finally feeling like something is going right with d.

you are here, and I am so grateful for you.

*****

I don’t know how we took some of the journeys we took without some major d-mishaps taking place–

pure luck, and the universe winking in our direction.

standing on line for Lilith Fair in New Mexico and boiling the insulin.

me leaving on a plane for Nashville, my pump sitting on the towel rack at home in New York.

that other time I took both sets of house keys with me to the conference in Denver

(not d-related, but my goodness, there have been plenty of things for you to complain about!)

scares with eyeballs, pumps, insulin, insurance denials, new endos, no insurance at all…

no matter what, you have my back and fight the good (and bad) d-fights with me.

thank you.

*****

you learned about insulin & sugar, carbs & IOB, potential complications & depression.

about how awful  450 mg/dl is.

the difference between BGs that lower just the right amount

and unsuspecting, unsymptomed lows that creep out of nowhere

you found me slumped on the kitchen floor, gazing into the open refrigerator, and got some juice in me.

you went with me to endo appts. with dr. wonderfulendo in a different state, when I told you

I needed to see an endo with a brain instead of the dr. crappys that were a dime a dozen where we lived.

you listen when I’m scared or mad or just burned the hell out.

and you help. even if I snap at you when you ask if I need help.

you help.

*****

you make everything okay, somehow, in ways I don’t begin to understand.

navigating mazes of EOBs and phone calls and blood tests and backdated referrals,

shouldering the bother and the annoyance, the crap and the everything

picking it up when I just have to put it down

just for a minute.

thank you for supporting me, for loving me and all that d brings with me…

when Dex screams all the freaking night long b/c it thinks I’m 40, when in fact I’m 80(!!!)

when I forgot to put the pump back on and we just got our InNOut order.

when I start testing my blood just when we’re about to have dinner.

when we decided that 6 negatives were enough,

and we already have the perfect amount of enough with us and our daughter.

we are enough. together.

*****

seventeen years ago we began.

in that time, so many lifetimes.

so many moments, and not just the d-ones(!)

thank you for every single one of those moments, those days

and every one still to come.

*****

happy anniversary, my love.


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.


a focus on good D things

May 12, 2011

DBlogWeek2011Banner

Believe it or don’t, but just  like Karen’s blog header says, life with diabetes isn’t all bad. Seriously. The D-Blog Week topic for the day involves focusing on good things diabetes has brought us. I don’t like to give D a whole ton of credit, but I do like to look at the brighter side. So let’s get into it, shall we?

Because of type 1 diabetes, I have:

– Met SO MANY truly amazing people, including: The girls from my Cottontail Cabin at Camp Diamont, Montana’s summer camp for kids with diabetes that I attended from 8 to 14 years old! My several friends from Camp Diamont who came back as junior and senior counselors with me: Y’all are such superstars and I’m glad to still know you and have you in my life (thank you Facebook and LinkedIn!). My dear friend E, my first friend with type 2 diabetes who was a real love and whom I miss so much.

– Joined my life with a partner who loves me for who I am–D included. She knows all that my life is, and accepts me with it. There’s no hiding it, even though I didn’t take very good care of myself the first 15 years we were together.

– Become an assertive advocate for myself, family members, friends, random strangers with regard to medical care providers. (Insurance companies are another matter–getting something in the mail from insurance gives me a panic attack before I even open it.) BUT with medical care, I’m your go-to person. I can stay calm, ask questions based on research, say things like “What does the most current literature say about that?” “What kind of results can be expected?” and “How can I make _____work in my life?” And if I’m not satisfied with the answers I hear, I feel empowered to break up with the Dr. Crappys and find another provider. It might not be easy, but I’ll find one who will treat me with current, peer-reviewed knowledge and expertise and respect about successfully managing type 1 diabetes.

– Learned how to take care of myself, and to problem-solve for whatever crisis comes my way. Being prepared is one thing, and dealing with whatever comes along is another. Cooked your one bottle of insulin in a car in 90 degree heat? Been there. Lost insurance coverage? Yep, done that too. Left the house without insulin pump, whether for hours or days? Word. BGs go high immediately after exercise at certain times of day, but go way low during exercise at other times? Still figuring that out, but I *will* prevail (if you’ve dealt with this issue too, please comment or email!) D has made me self-reliant, confident, knowledgeable, and creative.

– Found that I have a passion and talent for promoting public health in ways that don’t demand a lot from individuals: Policies and systems that help make healthy behaviors easy for communities and populations to choose. Because the environment and culture influences so many of my decisions regarding diabetes management, from food and exercise to medical and life insurance coverage and beyond, I understand. It would be a lot easier if our environments supported us in managing our diabetes, rather than demanding we be strong and independent and go against the grain to make the best choices for our health. It just shouldn’t be this hard, and I like to work to change that.

– Found the DOC (Diabetes Online Community), hundreds of folks with D, parents of children with D, and loved ones of kids and adults with D. Can I just say that finding the DOC was truly a lifesaver for me? That’s the truth. I don’t think I would ever have been able to start to change so many of my own behaviors without having the security blanket and the supportive push into the positive pool of the DOC. Everyone who blogs, or tweets, or is on Facebook, with D, is sharing their piece of the entire global d-mosaic with us, and making all of our lives better. Together. Some days I wish I could just read blogs and tweet all the time…but honestly, I’d rather meet everyone at, say, a d-prom IRL.

-Knowledge that I can do this, it is possible and I won’t be struck out of the game. Thirty years in, I’m still here. That’s a good thing.


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