dinner invites #hawmc day 19

April 19, 2012

People with diabetes are amazing dinner guests. We always know, or can check on calorieking.com or some mobile app, how many carbohydrates are in any food and beverage. We will bring, among other yummy items, the essentials: diet coke (or pepsi), cupcakes, bacon, holiday candy, and/or brownies. And we’ll mesmerize dogs, cats, babies, and toddlers with potential assortments of buzzes, rings, beeps, and psssts from various diabetes technology acting and interacting throughout the meal.

I would so love to have dinner with good girlfriends from Camp Diamont, the camp for kids with diabetes in Montana that I attended the last week in July every summer when I was 8-14. Amy Jo, my BFF from my first year and all the years after; Melanie, the girl who I was convinced hated me until we were counselors together and I found out what a badass person, librarian, and friend she is; Heidi, the “cool girl” who let me live with her years later when I did a summer internship in Seattle; Jodie, the fun, sweet, awesome girl from my hometown who later became the program director at Diamont; and Erika, the sweetheart from a small town north of my hometown who (I found out 20+ years later on Facebook) grew up with one of my besties in high school.

I would also love to have dinner with a few campers who have a special place in my heart, from my older years as a camper, and then from my years as a junior counselor and counselor: Jami, Kim, Kristy, Justine, and Mark. I actually got to see both Kim and Mark last summer, and have meant to blog about it ever since. It’s on my list. Seeing each of them last summer was a majorly major highlight. It was as if no time had passed–yet there we were, all grown up and such.

Then there’s the dinner with 5 of my good friends from when I was a counselor for several years at Camp Diamont: Bill (amazing camp director), Cathy (Type Awesome), and Mark, Melanie, Jodie, and Heidi (see above–we were counselors together too!). Being a counselor at the camp that meant so incredibly much to me as a kid with type 1 was such an indescribable experience. As a kid, it was such a relief and a joy to hang out with 100+ other kids and normalize all the mess that is type 1 diabetes. As a counselor, it was that same kind of relief and joy, as well as an honor and privilege, to get to hang out and perhaps mentor or role model for ones younger than me. I loved it. It gave me hope, for them as well as for me.

Sigh. I’m feeling really happy after writing and thinking about getting to have dinner with all of these wonderful d-peeps. Love to you all, Diamont campers and counselors from 1981-1988 and 1990-1995. Best. Times. EVER.

I’ll bring the diet coke and the cupcakes.

This prompt is for Day 19 of wego Health Activist Writer’s Month Challenge: 5 Dinner Guests. Who are 5 people you’d love to have dinner with (living or deceased) and why?

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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.


10 things I couldn’t live without #hawmc day 13

April 13, 2012

 

 10 Things I Couldn’t Live Without (type 1-style)

10. digital logbook spreadsheets

9. Dromedaris & Asics shoes

8. diabetes online community (#DOC), every single last one of you! 🙂

7. dr. wonderfulendo

6. Dexcom continuous glucose meter (CGM)

5. OneTouch Ping blood glucose meter

4. Animas Ping insulin infusion pump

3. family & friends

2. My partner and our daughter.

1. Insulin

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Things I Couldn’t Live Without (type 1-free style)

10. Pilot G2 gel pens, blue, fine point

9. fleece: jackets, pants, gloves, scarves, blankets, whatever, I love it

8. pluots, the red ones (they’re coming into season next month!!! woot!!)

7. Big Bang Theory, Friends, and Sex in the City reruns

6. InNOut cheeseburgers, protein style

5. Cupcakes.

4. Spotify

3. honeycrisp apples

2. Facebook

1. friends, family, and the #DOC (of course they go on both lists!!!)

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BTW: Happy weird not-quite-diaversary-to-me! Friday the 13th is the unlucky day I was diagnosed…and in another 2 months it will be my actual 32-year diaversary. There it is.

This prompt is for the wego Health Activist Writer’s Month Challenge. The prompt: Write a list of the 10 things you need (or love) most.

Want more? Check out all kinds of wonderful posts from tons of supercool health activist writers at wego health’s Facebook page.


a theme song for me and D (#hawmc day 11)

April 11, 2012

***

One, two, three, four, five, six, seven, eight

Syringe, infusion, insulin incorporated

We’re gonna do it!

***

Give us any carb we can eat it

Low blood sugar? and we’ll treat it

We’re gonna see those A1cs come true…

Doin’ it our way

***

There is no cupcake we won’t try

Never heard “bacon’s unnecessary”

This time we won’t forget to bolus

We’re gonna do it

***

On your mark, get set, sweatbetes!

Got a dream and it’s not BG-less

We’re gonna make those A1cs come true

And we’ll do it our way, yes our way

Make all our d-dreams come true

And we’ll do it our way, yes our way

We’ll make our non-d-dreams true, too…

For me and you.

***

When I read the prompt for today, the very first thing that ran through my brain was Laverne and Shirley’s theme song. So there it is, a little doctored in such a way that it fits this d-blog. Enjoy!!

Prompt for Day 11 of the wego Health Activist Writer’s Month Challenge: Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

For more posts like this, check out the wego health Facebook page and #hawmc on Twitter.


DSMA blog carnival for july: diabetes tech

July 28, 2011

I’ve been procrastinating and putting off blogging for more than a month now, without any really good reason. To add some oomph with much-needed motivation to get me over the nonblogging hump, I checked out the Diabetes Social Media Advocacy (DSMA) Blog Carnival prompt for July: (Thanks, Karen at Bitter~Sweet Diabetes, for the reminder! It WAS hot-but not melted!)

What improvements or adjustments would you make to current [diabetes] technology?”

Some context: I currently am privileged to be able to own and use an insulin pump with blood glucose meter/remote (Animas One Touch Ping), and a Dexcom 7plus CGM (continuous glucose monitor). I’ve been using those 3 major d-gadgets for about a year. Before that, I was a Minimed pumper since 1994, and a One Touch meter girl since waaaaay before then. I demo’d the Minimed Revel along with the Ping before deciding which systems to purchase convince/beg my third-party administrator to approve for coverage last summer. I tote around a CalorieKing 2011 book even though I also have the CalorieKing website bookmarked on every web gadget I own.

After all that prelude, here’s my wish list for diabetes technology:

1. Artificial pancreas/closed-loop system. Yes, please! I understand, we’ve got a while more to wait for this one. In the meantime…

2. If they are separate gadgets, then insulin pumps, BG meters, and CGMs should be on speaking terms with each other, and they should all speak and understand the same language. They should work TOGETHER, since they are all part of the same system. The one I use to manage my d-life.

3. Excellent, easy-to-use, data management systems. The “systems” associated with all 3 of the devices I currently use are, to put it really bluntly, crappy. Three different kinds of crappy. How the companies manage to develop such yuck is beyond my comprehension. They’re not user-friendly. They don’t use the same standards. And of course, they don’t look the same once the 3 different data sources are downloaded. See next point for more on this craziness.

3.5 The absolutely separate and specific INANE requirements for downloading the data (“dongle,” anyone? really?!!). Claire’s hilarious and unfortunately accurate post covers the intricacies better than my exasperated eye rolls can hope to convey. All I have to say is: Wireless. Seriously.

4. In this time of All-Apps, All The Time, I wish for an app that would suck the data from the 1 insulin pump/BG meter/CGM system and display the most useful, most important data that I need to make my daily–sometimes moment-by-moment–life D-decisions. I wish that app could be accessed from any device, Apple, Android, whatever. And I wish that it wouldn’t just do a big ol’ data dump with a bunch of averages. Some data points are most useful and helpful, and I shouldn’t have to dredge and yank them out myself.

5. The BG meter/remote should be able to operate all of the insulin pump functions. For example: I should be able to track my history for boluses, total daily dose, basals, primes; review and edit my basal rates; and set temporary basal rates. It’s crazy to currently be able to see so many different functions on the meter/remote, but not the same functions I need to work the pump. Especially with the following problem I’ve experienced a lot lately:

5. With its reverse type (white on black background), the Ping pump screen is completely unreadable in the light of day. I went camping last weekend, and couldn’t see to give a bolus directly on the pump when outside (most of the day, when one is camping) or to set a temp basal (important for me when hiking, in hot sunlight, in the afternoon). Luckily, I had the meter/remote nearby, so I could at least do the bolus, but not the temp basal. Major drawback!  No device screens should use reverse type.

6. The carb counting food list integrated into the system needs to include every product available at any Trader Joe’s.

7. Glitter. Rainbows. Unicorns. Cupcakes with sprinkles. Medtronic has a good start here, but that’s just a start. The possibilities…necessities really.

8. My top wish/priority for diabetes technology: Affordability. Availability. Access. Worldwide.

This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/july-dsma-blog-carnival/



31 years and some cupcakes, too

June 13, 2011

Here’s the thing: Today is my 31st anniversary of my type 1 diabetes diagnosis.

It’s my 31-year diaversary, if you will. And while I hoped to offer a post containing all kinds of witty musings and tender lessons learned, complete with inspirational how-to’s and potentially-scary things gone awry that turned out to be funny and fine after some unexpected help…I’m not really feeling it. Sorry about that.

I’ve been trying to write this specific post in the few weeks since my last one. After I got all revved up and started with d-blog week 2011 (which was awesome, and quite the cool way to start this whole d-blog thing.Thank you, Karen!), I lost some steam. We had a ton of guests coming to stay at our house one week after another; lots of excitement with end-of-school-year and other special events; and just not a lot of time to actually sit down and type any of the things I’m thinking about D into a blog post.

However, I did have the opportunity to do a guest blog for Kim at Texting My Pancreas, and just finished another for Meredith at with a side of insulin that you’ll see on June 15.

Anyway, a lot has gone on. Other major life things happened, and lots of not-so-major life things too, that occupied my head and heart right along with D:

*Ms. Diva had her preschool “graduation” (Really? She’s five!) and kindergarten registration for August.

*Ms. Diva also had her first ballet performance, where she realized that she is meant for the stage with an “I belong here” look in her eyes as she promptly stopped doing much dancing so she could search the audience for her family and give us a huge smile.

*My mom traveled to visit us for the week of both of Ms. Diva’s events.

*My partner and I celebrated our 16th anniversary last week. And after a year in the new home/town, we actually found a wonderful SITTER(!) who lives just around the BLOCK(!) and whom Ms. Diva LOVES(!). Now we get to go to a movie next month, too! HALLELUJAH!!

*A good friend just gave birth to a beautiful baby girl. Hello, Baby M! Congrats, Mama and Papa!

*It was my nephew’s 2nd birthday this weekend. Happy birthday, adorable boy!

*My best friend finalized and accepted an offer for an awesome new job that will take her from Northern California to Rhode Island. I’m so. totally. excited. for her, and at the same time, sad that she’ll be so far away. Another of our supergood friends and I had a gorgeous farewell dinner with her, and then she spent a whole day with me, my partner, and Ms. Diva this weekend with all kinds of yummy treats (Sift Cupcakery and In-N-Out Burger, anyone? Yes, please!)

*I’ve been working on keeping up with 4-5 bouts of walking/running per week. I love this major life change, but it still takes a lot of my focus and attention in order to keep going and not slack off.

So…thirty-one years. That’s a hell of a lot of time. Most of my life. And what do I have to show for it?

So far, on one hand: A whole lot of not-too-much, for which I am insanely grateful and lucky. I’m not sure that I deserve not having much of any complications that my doctors and I are aware of at this point in time, other than recent root planing and laser treatments in all 4 quadrants of my mouth, combined with a grievance/appeal to my dental coverage to get an exception so they would pay the benefit.  Although it could change at any moment, I’ll take it and be thankful.

On the other hand, I have many many minutes, energy, dollars, focus, sweat, tears, concern, annoyance, anger, frustration, and ME to show for 31 years with D. It’s me testing the BG and glancing at the CGM throughout all of the special events above; chugging some juice before the ballet so that I can smile big right back at Ms. Diva while she’s on stage; SWAGing the carb count for the yummy Korean dinner with my BFFs; schooling the dental coverage provider that treatment of gum disease earlier than later is the standard of care for women with diabetes, so even though I didn’t have too terrible of gum disease YET, I needed the treatment; etc. etc. etc. It’s me thinking 24/7, making choices, balancing the best and the worst D-options and trying to come out with some solutions that work best for me, my loved ones, and the life that is ours.

After 31 years with D, I can’t spend 5 minutes with someone without showing them some small evidence of it. That’s okay. It’s how I need it to be. Diabetes is everywhere, a huge part of my identity, and unhealthy for me to ignore or deny.

D shows up all throughout my days and my life; but it is not the meaning of my day–or my life.

(Now, cupcakes, especially from Sift, could very well be the meaning of life! Or at least, the meaning of my 31st diaversary! I got a few to sample in honor of the day. Photos will be taken and posted soon, I promise.)


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