Change the World – #dBlogWeek Day 1

May 12, 2014

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Today’s topic is Change the World.

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

This prompt is a pretty easy way for me to get back into the bloggy groove after almost exactly 1 year (gasp!). Yes, it’s been while. Hi, how have you been? I just went to the endo today. HbA1c was 6.9, thanks. I thought it was going to be a lot higher – go figure. I’m still not thrilled with what feels like a lot of highs, and I’ve been SWAGging my way through far too many carbs without even thinking about them (duh), but I did go for 2 little walks today. Progress. Oh, and I had surgery last month. Recovery’s been slow but just fine.

But let’s get moving on this #diabetesblogweek prompt!

3 major diabetes issues come to mind right away that I’d love to see change significantly: the ease with which anyone with diabetes can find trained, appropriate, compassionate, supportive medical care for their diabetes; the ease with which anyone with diabetes can access and use their own data, whether the data is from a lab, blood glucose meter, insulin pump, continuous glucose meter, or other piece of technology; and the ease with which anyone with diabetes can find and spend time with others who are in the same kind of boat.

I feel passionately that it should be easy to find a doctor or certified diabetes educator (CDE) who is well-versed in current research about recent technological and treatment options that may be appropriate for patients depending on the various contexts of their lives. It should be easy to find providers who are compassionate for and with us – not sympathetic, not pity or shame for us, but providers who will join WITH us and ask us “how can I support you in getting what you need for your diabetes?” This should be the gold standard, not the exception. In my experience, it feels like the exception – I’ve had several Dr. WonderfulEndos, for sure, but I’ve also had the Dr. Crappys as well – and unfortunately I’ve heard about them from others, too.

Just as much as I need medical providers who are well-trained about diabetes in both brain and heart, I also need access to my data – the numbers describing the vital diabetes and -related functions going on in my body – in a format and layout that is easy and useful for me to understand and make decisions. Without that, I can’t make choices that will be best for me. Any talk of making the “right” choice or the “best” choice, not mention the “healthy” choice, is incomplete without knowing my blood sugar, the direction it’s trending, how much insulin I have on board, how many carbs I ate in what time span…and so on…

Finally, I’m passionate about diabetes camp. I was diagnosed at age 7, attended camp from age 8-14, and went to diabetes teen retreat from age 15-17. I was lucky enough to go back and be a junior counselor, and then a counselor, at diabetes camp from when I was 18-22. For 14 summers, for about 1 week, I got to feel completely normal. There is no way to explain it to someone who doesn’t get it, but I will say it’s the biggest RELIEF ever. Like a giant boulder suddenly lifted off my shoulders and vanished for a week, that I didn’t realize was there the other 51 weeks out of the year until it was gone.

After grown-up responsibilities took over, and I moved around and couldn’t get back to my beloved diabetes camp but didn’t know where to find another, and years went by without it…I realized how much I missed the d-camp experience. I also realized how much I really needed a grown-up d-camp experience. I’d try to get it with support groups and meetups, which are wonderful, but not quite the same.

Then.

This.

Kind of like diabetes camp for grown-ups.

#BAMThereitis. You’re welcome.

Happy Diabetes Blog Week, everybody!

 

***Here’s the Change the World – Monday 5/12 Link List.


d-superpower (#HAWMC day 3)

April 3, 2012

If I had a superpower, it would be knowing which factor(s) played the most prominent role in whatever random, crazy-ass blood sugar (RCA BG) is showing up on my meter at that point in time. Hell, I’d like to be able to tell which factors were responsible for ANY type 1’s RCA BG! Wouldn’t that be so awesome? No more guessing! No more frustration!

Because, on any given day, some RCA BG shows up (let’s be real, sometimes there are more than one per day) and then I get to play the type 1 “Many Questions Game” to try and figure out what happened, and what to do next. Between equipment malfunctions, type 1 malfunctions, and regular life malfunctions, the number of factors playing a role is huge. Here’s a sample of an RCA BG situation of mine:

3pm. Meter says: 269 mg/dl. Dexcom says: 250 with 1 arrow going straight up ^, meaning the trend is that it’s rising at 2 mg/dl per minute. And the questions start piling up in my brain:

  • Did I eat lunch?
  • What time did I eat lunch?
  • How many carbs were in my lunch?
  • Did I bolus for the carbs in my lunch?
  • Did I SWAG (scientific wild-assed guess) the carbs in my lunch?
  • Did I correct for whatever BG was before lunch?
  • Do I have any IOB (insulin on board) now?
  • Is my pump tubing blocked?
  • Is my pump infusion site bloody, blocked or otherwise malfunctioning?
  • Did my pump site get disconnected?
  • Is my pump site getting too old?
  • Did I refill my pump with insulin this morning?
  • Did I use a new insulin infusion set?
  • Is my pump site in scar tissue?
  • Is my insulin at the end of the bottle, when it can get suspicious for some odd reason?
  • Was I low this morning and turned my basal rate down or off for a while, which F’s up the hours afterward?
  • Was I low this morning and turned my basal rate off, and did I forgot to turn it back on?
  • Did I forget to check earlier this morning for the stupid dawn phenomenon, and correct if it was high?
  • Did my dawn phenomenon go even higher than it usually does this morning?
  • How much caffeine have I had today? Have I had more caffeine than usual?
  • Have I exercised in the last 4 hours? 8 hours? 12 hours? 24 hours?
  • If I did exercise, what kind of exercise was it? aerobic or anaerobic? For how long?
  • Have I gotten up from my desk in the last several hours?
  • Did I eat something in the office kitchen when I was passing through earlier?
  • Did I bolus for whatever I ate, if I ate something?
  • Did I test before I ate, if I bolused?
  • What day of my cycle is it? One of the days each month when I need to crank the temp basal up? (Hello, PMS/insulin resistance!!)
  • Am I stressed–about work, about life, about anything specific? More stressed than usual?
  • Stressed about anything other than this high BG?!?!
  • If I am stressed, what amount of stress am I having and what’s my stress correction factor? How many insulin units per how much stress? HOW does one measure amounts of stress to allocate units of insulin for it?!?!

I got exhausted just typing these questions, nearly as badly as if I were dealing with them right now. With my superpower, I’d know both WHY the RCA BG was whatever # it was, and I’d know WHAT TO DO to fix it immediately and so it didn’t happen again. What a relief that would be.

No. More. Random. Crazy-Ass. Blood. Glucose!

For the wego Health Activist Writer’s Month Challenge (#HAWMC) prompt for Day 3: Superpower Day. If you had a superpower – what would it be? How would you use it?


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.)


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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