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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my diabetes shero

May 20, 2012

My “diabetes shero” is my daughter, Ms. Diva. She does not have diabetes, but she is the daughter of this mama with type 1. And she is amazing.

She has never known anything different than her mama with several buzzing and clicking little devices hanging on or around her body, even when she didn’t know what they did or why I needed them. I wasn’t sure how it was all going to go when it came time to tell Ms. Diva about diabetes. I read some different blogs about other moms’ worries, and decided I wasn’t going to think about it until the girl brought it up herself. Then I’d figure something out.

She was 5 years old when it happened. One day, Ms. Diva watched me prick my finger, squeeze blood onto a test strip, and said “Mama, why do you have to do that?” She’d seen me do it many times before, but that day, something provoked her to find out.

“There is an organ in our bodies called a pancreas. Mine stopped working when I was 7. Yours works great. It makes something called insulin, which helps your body use the food you eat to keep your body strong. The pump (point to pump) holds insulin. The meter (point to meter) tells the pump how much insulin to give me, through this tube. It works hard to try to keep the sugar in my blood at a healthy level.”

“Your pancreas doesn’t work?”

“Nope, babe, it doesn’t. Hasn’t for a long time.”

“What happens when you need a juice box?”

“Well, my pancreas still doesn’t work, but I’ve either taken too much insulin or eaten not enough food, or exercised too much. Then there isn’t enough sugar in my blood. Like when I say my blood sugar is low, you know? That’s when I need some juice.”

“Okay.” And she went about her day, to play Dinosaur Train and read some Fancy Nancy books.

The next day as we were sitting at the dining room table, she asked me a question. After I answered it, she looked at me intently and said, “Mama, your blood sugar is low.”

“Sweetie, why do you say that?”

“The way your voice sounds. When your voice sounds like that, you need a juice box.”

Ms. Diva was oh, so correct. My BG was 45.

“Thanks, honey.”

“No problem, mama. Will you tell me about the no-hitter on your Dex again? Do you have one right now? Can I see it?”

That girl. She had all of my heart from the moment we saw the little peanut in my partner’s very first ultrasound, and of course from the moment she was born, and a zillion times after that. But that day she let me know she’d noticed my diabetes without thinking that it made me different or less of a mother; noticed and remembered what I needed to take care of the diabetes problem at an annoyingly imperative time; and let me know that it was no big deal. She relieved some really giant fears I’d been carrying around inside without even knowing it.

I so love that my dumb pancreas and my diabetes are NBD for Ms. Diva.

I love her so much.

She’s my diabetes shero.

So many other cool diabetes sheroes and heroes right here, go read some more!

D-Blog Week 2012, Day 7: Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??


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 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.


dear 16-y.o. smartDpants (#HAWMC day 10)

April 10, 2012

Dear smartDpants,

I’m so proud of you, of all you have achieved and still will achieve in the future, while having type 1 diabetes. You’ve done everything you’ve wanted to do despite this disease. You haven’t lost your mind (because of diabetes, anyway)!

You’re deep in the middle of living and loving and finding out what you like most, what thrills you to your core, what’s meaningful to you in your life. I wish that you could find a way to incorporate caring for yourself and managing your blood sugar into the rest of your life’s development. I wish it weren’t so bothersome to constantly think about and care about your BG, insulin rates, food intake, and other health choices. It IS possible, even if it is a bother and takes mental focus away from things you love much more. Please consider taking the time–it’s not very much time, and you could feel so. much. better., physically and mentally, than you do now. It would be awesome if you felt good while you’re performing in choir and show choir and musicals and plays and recitals, and also while you’re learning and writing and thinking and having fun with your friends. You could feel so much better. Just try it, and see how it goes.

I know you have not had good experiences with doctors, nurses, and dietitians with regard to your D. Please believe me when I tell you that there really are medical professionals out there who can help you take care of yourself, and manage D, without blame and shame and stigma–without making you feel bad for feeling. You just haven’t met them yet! But you CAN learn about how to care for yourself and your D without the dr. crappys who don’t know how to treat people with diabetes. Stay strong. Keep up the faith that you will find good medical care. Not simply, or easily, but you will. Know that you deserve good, no excellent, medical care, provided with respect. You will find a dr. wonderfulendo, and more than one, in the years to come.

It’s going to be hard to hear this and know it to be true, but food is neither bad nor good. It’s something your body needs in order to survive, and it needs insulin in order to be useful to your body. It also impacts your blood sugar. It’s not a reward, and it’s not hurting anyone but you when you eat without bolusing or eat certain foods just because the nurse and dietician told you they were bad. The more crap you eat, the more insulin you’ll need. That’s all.

The numbers that show up when you test your blood are not bad or good, either. They’re just numbers. THEY’RE JUST NUMBERS. They do not determine your worth, and they do not mean that you are good or bad. They just are.

Numbers have power. BGs…carbohydrates…basal rates…correction boluses…and also, minutes of exercise and pounds of body weight. You can use that power to benefit your health, not to make you feel guilty and terrible. With knowledge and training, you can use the numbers. I wish that you would do this for yourself. There is no need to fear or hate the numbers, or the process of retrieving them or thinking about them. You can use your brain to analyze them, and to make decisions about what will help you feel better than ever! It’s not hard, you just have to speak up and ask someone who knows about type 1 diabetes management to teach you.

You know this in your heart already, but what the dr. originally told your parents when you were diagnosed in 1980 was a lie. There will not be a cure for diabetes by 1985, and there will still not be a cure by 1990, or 2010. It’s going to take a good long while–we still don’t have a cure in 2012. There are some really awesome researchers working on it, and the first outpatient clinical trials of a closed-loop system called an “artificial pancreas” have just been approved. It sounds super amazing. And remember when just a few years ago, an actual insulin pump was the size of your bedroom? Yeah. Things have gotten better–they’re not fixed or solved yet, but they are better technologically in so many ways. (Testing your blood will only take 5 seconds instead of 2 minutes, and all the data will be available for you to see and use on a small computer called a laptop! Awesomesauce!!)

Even though the doctors and nurses label you “emotional” and “noncompliant,” don’t accept those labels. Living with this lifetime disorder causes a lot of emotions/feelings/responses/decisions…and it takes some serious emotional work to maintain a clear head and not be a complete, freaked-out zombie over all your life requires. And while your blood sugars are consistently running at a very high level right now, with some massively low lows sometimes too, you don’t have to accept being called “noncompliant.” You are NOT a “bad diabetic.” You’re not stupid, and you’re not a bad person, either. They just haven’t found ways to communicate with you about diabetes such that you can listen and hear how to take the best care of yourself. You challenge them, and they’re not able to deal with it.

Take it easy on yourself. Your pancreas is broken, but your spirit is not. You have family and friends who love you regardless of how stupid your pancreas is. AND, you had one of the most important and incredibly COOLEST supports a kid with diabetes can have: CAMP!!! You’ll be able to apply to be a junior counselor in just a year or two, and you’re still in touch with so many amazing co-conspirators from diabetes camp. Guess what?  In about twenty years you’re going to start taking part in a huge community of people with diabetes communicating on computers from all over the world, and you’ll find a bunch of your friends from camp whom you won’t have seen for many years. You’ll also find many, many other wonderful people with diabetes in this “virtual” community. It’s real community, and it’s important. Don’t wait for it to come to you. Go find it, and speak up when you get there.

Just know this: You’ll still be kicking around here when you’re 39 years old, with a 32-year diaversary on the horizon, and you have NO plans to give in to this disease. You’re headed for that Joslin 50-year medal, and it’s not going to stop there! Please think about what I’ve said, about taking care of yourself and taking steps to whip that diabetes into better shape now rather than later. You could feel a lot better. I know you can do it.

This post is for wego Health Activist Writer’s Month Challenge. The prompt: Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?


a (free) day in the d-life… (#HAWMC day 7)

April 7, 2012


A regular ol’ day in the d-life of smartDpants.

6:30am: Alarm goes off, get up, walk across bedroom, turn it off. Sit back down on the bed. Reach to the floor beside my bed, grab my purse, test my blood. Deal with whatever the number says…If it’s below 65 mg/dl, drink 4.2 oz. of juicy juice apple juice, of which I have 8 or less boxes on my bedside table (that’s how many come in a pack). If it’s 120 mg/dl or higher, give a correction bolus of insulin to lower it. Sometimes that overnight basal rate sticks just right, I have a flatline throughout the 12-6:30am range, and I don’t have to treat either way. Love.

6:35-7:15am: Get ready for work. While I shower, leave continuous glucose monitor (CGM) on the bathroom counter. Disconnect insulin pump tubing and leave pump on the counter as well. Once in a rare while, I might get a “free shower” where either my CGM sensor or my pump site have to be removed and replaced, and I’ll remove it before, and shower without 1 of these items stuck to my body, and replace it afterward. Only once every several years does everything actually line up so that I get a COMPLETELY FREE SHOWER WITH NOTHING STUCK TO MY BODY. Bliss.

7:15am: Wrangle our daughter, 6 year old Ms. Diva, out of bed to get ready for school.

7:30am: Make breakfast for Ms. Diva. Get water in the outside dish for our 2 big boo-boo-dogs. Get water and food in the inside dishes for the boo-boos, invite them to partake in their breakfast too. Give 13.5 year old boo-boo his pain meds for joint/hip problems in a teaspoonful of peanut butter. Try to remember to take my OWN meds: multivitamin, 2000 mg Vitamin D, allergy OTC, and 81 mg aspirin.

7:45am: Test my blood again. The breakfast conundrum: If I eat the same breakfast that I eat 90% of the time, I don’t have to worry much at all about my BG for the next few hours. It fills me up, doesn’t have very many carbs, and is yummy. It’s a slice of whole wheat bread toasted with a slice of havarti cheese melted on it, with 1 whole egg and 2 egg whites scrambled on top. With it, my BG barely raises and I don’t have to think about it. But too many mornings I try to think of something different to eat, waste a whole ton of time, and end up having something that sends my BG high above 140. Sigh.

8am: Walk Ms. Diva 2-3 blocks to school. This tiny little amount of walking is a crapshoot–if I’m low or on the lower side of target range before we go, I have to make sure to grab a juice box or glucose tabs before we embark. If I’m high, I hope that walking will kick the insulin into a higher gear to get it back down. Even if I’m in the “no prob” range before, I better grab the juice just in case. Crapshoot.

8:30-9am: Drive my sweetie to work, then make my way to the office. Along the way, watch the CGM to see which direction the BG is going. Many times, have to do BG tests as well.

9am: Get into the office. Pull BG meter, poker and test strips bottle out of my purse and set them on my desk. It helps me remember to test with them sitting right in front of me throughout the day. My work involves sitting at a computer most of the day, with some meetings in the office and some on the phone. So it’s usually very easy to test, and I try to do it around 5-7 times during the work day.

12:30pm: Eat lunch. Hopefully I’ve remembered to bring mine, yummy leftovers from home. If not, I grab something from one of a couple places close by my office. Then it’s another quandry: high-carb but yummy and easy deli sandwich at about 48 carbs for the whole wheat roll, or very low-carb and yummy salad with grilled chicken from the Mexican restaurant, maybe 20 carbs with a few tortilla chips? Or just grab a protein bar from my desk drawer stocked with juice boxes, glucose tabs, peanut butter, and the bars?

Regardless, I test. And almost always, I bolus. (Unless I forget to bolus, in which case, the next few hours are spent realizing that my BG is rising and figuring out the reason why.)

1pm: Far too rarely, I will actually remember to rouse myself from the office and get outside for a 15-20min. walk. Writing this has reminded me I need to get that back in the schedule. Soonest.

1-5pm: Research, email, write, talk, and write, write, write some more. Test the BG  several more times throughout the afternoon. Treat as indicated. Watch the CGM during meetings, silence the incessant vibrating as necessary.

5pm: Leave to pick up my sweetie at her work, and then Ms. Diva. Watch the CGM and be ready to test and treat as needed.

6pm: Get home. Figure out what to have for dinner. I don’t cook at all, and for our 16+ years together, my partner has done all of the cooking, and she’s amazing at it. Thank her. Again.

6:30pm: Test. Bolus. Eat.

7-11pm: Evening things: get Ms. Diva ready for bed, clean kitchen, talk with my partner, watch TV, Facebook/Twitter/email/blog, get ready for bed. Try to test 2-4 times before bed. Often, my pump will need to be refilled in the evening. Make sure to do that before bed.

11pm: Fight the sometimes-strangely-strong urge to watch Friends on Nick at Nite waaaaaaaayy too late during the week, and quite frankly, too late on weekends as well. Get ready for and go to bed.

Test. Drink juice, or correction bolus as indicated. Check pump for insulin on board (how much insulin is still available and acting from my last bolus). Check CGM to see which direction the arrows are pointing, compare to insulin on board. Hope that everything’s set so that my basal rates will get me through the night without the CGM vibrating its lights out again and again, and waking me (us) up all throughout the night. Make sure at least a couple juice boxes are on the nightstand.

11:30pm: There it is, another day in the life. Bolus-worthy sweet dreams!

This post is for wego Health Activist Writer’s Month Challenge: Day 7. Health Activist Choice! Write about what you want today. Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

To find all kinds of awesome posts from all kinds of wonderful health activists, check out the wego health Facebook page.


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?


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