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.

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just call me jenga-girl

May 15, 2012

…in pure confessional mode tonight, especially since I’ve been quietly raging against planking blood sugars in the 160-199 range since about 4pm this afternoon. (It’s almost 11pm.)

I’m a stacker.

When I don’t pay attention. When it’s been a couple of hours and there is no down arrow on Dex the continuous glucose monitor. When a perfectly good, accurately-calculated correction bolus has been given ample time to work and yet that damn BG just. won’t. come. DOWN.

I stack correction boluses.

If I’m feeling extra special feisty, I’ll throw a bolus for some carbs in the middle of a correction bolus stack, because I’m just that pissed at the infernal high BG and I’m hungry.

Numerous times my CDE and endos have looked at my logsheets and mentioned, “You tend to stack a little.”

Sometimes the wonderful D-team will follow the previous observation with: “Do you think you could wait longer before you correct again? Maybe 4 hours?”

They see my face–4 hours? Seriously? “Well, how about 3?”

(I do mean it, they’re wonderful. They really read over my entire logsheets and ask good questions, and help me think through some solutions to my current d-dilemmas.)

Yes, I’m a stacker.

I don’t MEAN to do it, not in a “I’m going to intentionally harm myself because I don’t know well enough what I’m doing and/or I think it will be fun.”

But. Just about the most frustrated I ever get is when I’ve done all that I can do to get a high BG to lower, and it won’t budge. Over several hours. Sometimes I end up crying because it feels hopeless. And I just feel sick–headache, sick to my stomach, fuzzy teeth, dry mouth, a heavy feeling as if concrete is slooooooowly inching through my veins. Blech.

I stack those boluses.

I’m impatient, not only about high BGs coming down but about many many other things in life. I get impatient that correction boluses don’t work immediately, even though I use rapid-acting insulin.

Really? Rapid? It’s not rapid waiting hours and hours for a BG to come down. Not eating anything because I’m afraid of what will happen then. Guzzling water and sparkling water and diet soda and ice cubes while I just want to eat some real food.

This being my confession, I can also say that I have improved at not stacking so much over the last year or so. Yet the possibility of stacking is always there in the background. I have to be really mindful, all the time, and stop myself from giving another bolus when I still have insulin on board (IOB). It’s a process, for sure. But I have gotten better at blocking the stacking urge.

Like right now, for instance. BG is 224, it went UP in the last few hours! Grrrr. Now I’m thinking that I messed up the carb counting at dinner, which added to the stuck BG and risk of my stacking tonight.

And so I’ll start again tomorrow, trying and working hard not to stack. It’s a neverending process.

Check out the other posts about One Thing to Improve here.

D-Blog Week 2012, Day 3: Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!


the first time I gave a shot in my stomach #hawmc day 28

April 28, 2012

The first time I ever gave a shot of insulin in my stomach, I was about 10 years old. I’d had type 1 diabetes for a few years and gave multiple daily injections in my arms or thighs. But for some reason, the idea of giving a shot in my stomach gave me the creeps.

My family and I were visiting my grandparents during summer vacation. Everyone else was in the dining room, getting ready to have lunch. My mom and I had been “discussing” me trying to use my stomach, to give me more options for shot territory, for weeks. I had given my mom a lot of attitude about it. That day, she went all tough love on me and said after I’d given my shot in my stomach, I could join the family for lunch. But I wasn’t going to be allowed to have lunch without giving my shot, and I wasn’t going to ruin the rest of the family’s time with my whining and whatever other mess I was dishing out about the stomach area.

I sat on the couch in the living room for a looooong time. I don’t know what had built up in my head around giving shots in my stomach. I don’t even know if I was afraid of potential pain, or something else. So I sat and stewed about it. I did hold the syringe in my hand the whole time, and a few false starts where I drew back to plunge it into my skin, then did a sharp halt each time. A couple of times I put everything down and tried to get up the nerve to go into the dining room with my family without completing my task. Then I sat back down and picked up the syringe again.

Eventually, I did it. NBD. Even though it was NBD, though, the tears streamed down my face. I’d broken through some sort of weird mental barrier, and it was a huge relief. I’d done it, even though I didn’t want to, and didn’t want anyone else to, and didn’t want to deal with it at all. It was all okay. (I don’t think it hurt, either, which was a good thing.)

Finally getting up the nerve to give a shot in my stomach totally built my confidence around being able to do d-things myself, and do them well. My mom knew what she was doing. I didn’t realize that at the time, but I sure do now.

wego Health Activist Writer’s Month Challenge, Day 28: The First Time I…Write a post about the first time you did something. What is it? What was it like? What did you learn from it?


the day after the case of the covert croup #hawmc day 17

April 17, 2012

I’m taking another easy out today for Health Activist Writer’s Month Challenge. But I’m not taking the free pass (yet)!

After “Ms. Diva’s Case of the Covert Croup” yesterday, I’m exhausted and really need to sleep. So I’m directing you to a guest post I did last summer for my friend Meredith at with a side of insulin (a totally rockin’ #dblog that you should follow. She’s awesomesauce personified).

It’s all about lessons learned the hard way for summer travel with d: the time(s) I boiled the insulin. Enjoy!


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?


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! 


letters to dear dr(s). crappy and wonderfulendo

May 10, 2011

DBlogWeek2011Banner

There have been so many of you, I’ll just number you chronologically. Your offenses are very similar: condescending attitudes; inability to listen to what I shared with you; flat-out inaccurate information about this disease; labeling me “noncompliant” or “emotional” and then using that as an excuse not to provide the best medical treatment I needed…and so on. Here we go. (the yrs. old = my age when I saw these drs.)

Dr. Crappy #1 (7 yrs. old): You misdiagnosed me, leaving my mom with “she’s got a flu bug” which several weeks later became me almost falling asleep in the pool during swim lessons. How could you not smell the ketones on my breath? I was drinking at least a gallon of water a day, falling asleep sitting up in the middle of the afternoon, and spending the rest of my time in the bathroom peeing everything out. Easy enough to get urine in a test tube when it’s coming out of me so frequently–WTFructose?! Shame on you.

Dr. Crappy #2 (7-17 yrs. old): You were pretty much the only endo in town. You labeled me “overweight” and “an emotional eater” when I was 10 years old, and I wasn’t overweight (I have my medical file from your office). Every time I came to an appointment, you told me to lose weight. At what point might it have occurred to you that another approach would be helpful? Never?  I attribute at least part of what’s been the story of my life with craptastic body image, eating and exercise behaviors to you.

Dr. Crappy #3 (19-20 yrs. old): You refused to provide medical advice for my diabetes until I lost weight. You have type 1 diabetes, and prided yourself on averaging about 65 mg/dl at any given time, and keeping a bottle of glucose tabs with you everywhere and just “popping a few” as needed–but not too many, watch out! Many times you compared yourself to me with disparaging comments about my weight, my (lack of) BG control and overall “noncompliance.” Thinking of you still makes me cringe.

Dr. Crappy #4 (35-36 yrs. old): You upped my basals constantly based on what–my HbA1c? Because I sure never gave you any BG data to base any decisions. Most of the rest of your patients were type 2, and your nursing staff constantly forgot that I have type 1. Due to your misinformed increases in my insulin ratios, rates and all else infusion pump, I ate all. the. time. and ran low all day, needing more and more food and sugar just to be able to think for a minute. I firmly believe that many of the other meds I “needed” during that time weren’t really indicated, because my symptoms were coming from always being low. I do admit that had I tested more than twice a day (on a good day), I would have had ample data to fight back. But you shouldn’t have been changing anything without that data anyway.

Dr. Crappy #5 (37-38 yrs. old): I am grateful that at least you knew that #4 had me on way too much insulin. Very grateful. I’ll admit that. But, you went way over into the other end of the pool, with your low-low-low carb diet recommendations and strong suggestions that sound just a little bit anorexic-crazed. I’m really glad you never broached your trademarked nutritional protein supplement food replacement thing to me, because I would have lost it on you. Your staff doesn’t know the difference between types 1 and 2, and one said (in the same breath) “Your BG is too high, you need to watch that. I had a patient die from going too low, though, so watch out for that.” You’re also a little lazy, wanting me only on a Medronic pump because the rep hangs out at your office every week, then suggesting the Omnipod because a colleague of yours loved it. Do some research, find out what’s available and then talk options! I will say THANK YOU for writing the letters for my Animas Ping and Dexcom cgm, but you didn’t even want to know how they worked! That’s just weird. Get over yourself.

WHEW! Enough of that ickiness. Nice to get it out there, though. Now, on to the good stuff.

Dr. WonderfulEndo #1: (21-32 yrs. old) THANK YOU for telling me “it would be better if you could lose some weight, but it’s not necessary in order to get your BG under control. You don’t have to be skinny to manage the type 1.” Thinking about it almost makes me cry. You provide the best, most current, most supportive treatment for your patients regardless of their circumstances, and that is so incredibly rare. Here is where I apologize for still not testing more than 2-3 times/day and not providing you with decent data so that we could make the best decisions about my care. We could have done great things together–and I am so grateful for all of my appts. with you. Then, when I didn’t have great or much insurance coverage you didn’t collect anything over the amount billed to insurance. If you hadn’t done that, I would have had to break up with you. SO GLAD that I didn’t have to! You. ROCK.

Dr. WonderfulEndo #2: (38 yrs. old-present day) THANK YOU for listening to me, sitting with me for up to an hour at a time, and looking at my crazy logs of 15 BGs/day and everything d-related, speaking to me as an intelligent person with 30 years of experience. THANK YOU for talking to me as a problem-solving partner. THANK YOU for treating me as someone capable of doing the necessary things, even though they’re hard, in order to take better care of myself. THANK YOU for saying “we can figure this out,” and then helping me do that! THANK YOU for making it easier for me to “tweak” boluses and basals, and for only taking on 1 “tweak” at a time–not my entire plan for my entire day, because that doesn’t do anyone any good. You. Also. ROCK.

p.s. to WonderfulRD/CDE and WonderfulNP/CDE (38 yrs. old-present day) THANK YOU for listening, for laughing and crying with me, for looking at my numbers and logs and ALWAYS asking gentle, positive questions about what I CAN do, never chastising me for what I haven’t done/didn’t do. THANK YOU for alerting me to the fact that I’m a big correction stacker–I’m still trying to limit that a little. THANK YOU for making certain things sound possible, and for celebrating with me when they are! I cry just thinking about how much you’ve helped me. Looking forward to all kinds of goodness to come…and can’t believe I just typed that about my d-team: it’s such a relief, a joy, and a privilege to have medical providers who get it, and who can bring it. It’s about time.


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