dblog week 2013: share and don’t share

May 13, 2013

diabetes blog week 2013

Hey, it’s dblog week again! I’ve come out of hiding to see if I can pull a few posts together. Here’s Monday’s prompt:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

Hey, dr. wonderful. Great to see you here. There are plenty of things I wish you could see and know about my life with D. It’s not all pretty, but it’s me. Here we go.

1. I’m a few weeks away from my 33rd diaversary, and at this point in time, I’m wondering how the next 33 are going to go–and how I’m going to make it through them. In another 33 years, I’ll be 73 years old. On one hand,  I fully expect to make it there (and beyond) with few complications. On another hand, that’s a hell of a long time. It’s another lifetime. I’m already bored with all that d-maintenance takes. How am I going to make it through another 33+ years?

2. The dawn phenomenon seriously fucks with every weekday morning, and any weekend morning when I get up before 9am. Why can we not figure this thing OUT? We’ve tried slamming it with a honking basal increase from 6-9am. We’ve tried a graduated increase starting at 4am, then again at 6am, until 9am. We’ve also tried a lesser increase from 12am onward. I’ve tried not eating breakfast (BG still rises at least 50, more like 75, points in an hour). I’ve tried eating a tiny snack the second I get up. I’ve tried bolusing for breakfasts I don’t actually eat. What. The. Hell. Are we ever going to win this game? Because it’s been a long time now, and I’m sick of this. Doesn’t your medical degree, plus my brains and experience, trump my liver?

3. I don’t like low BGs. But they’re just easier to deal with – not that I LIKE dealing with them, because I don’t. Seriously. But it’s easier to grab and ingest 15 carbs, and wait 15 minutes, than it is to give a correction. And wait. And test. And wait some more. And figure all the numbers out again, just to be sure. And wait. And test. And rage bolus/stack. And wait. Some more. And test. And…yeah. That’s harder for me. I can feel my blood sugar rising, and I know if it’s more than 140. I can’t feel the lows, but that somehow makes it not as bad. The highs make me feel yucky, and they can take forever to remedy. Please know that I’m not trying to be low all the time. I just hate being high.

4. Performing. It’s something I love to do, either singing or acting or speaking in public, and it makes my BG RISE rise RISE. Sometimes as much as 100-200 points, no carbs involved! I know it’s not running marathons, and it may not seem athletic at all, but it’s serious to me. I could really use some help with this. I hate feeling the way I do at 300 while I’m supposed to be singing or giving a presentation. It’s hard to sing or speak with fuzzy mouth, sweaters on teeth, and dry throat. I don’t know how to deal with and fix it, and I don’t know how to manage it through experimentation since I can NOT go low while I’m performing.

5. I’m the same person who for most of my d-life, barely tested, had crazy high BGs, and have a really messed up relationship with food. About 3.5 years ago, I decided I wanted to get pregnant. I am honestly amazed at the way I wrapped my arms around my d-management and got my BGs under so-called “control.” The whole pregnant thing did not happen, and now here I am. I’m not sure how to keep my diabetes under “control” just for me. I don’t know why else to do this if it’s not for the higher purpose of taking control of my disease in order to keep a baby healthy. I also don’t know how to let go of the super-tight control of the trying-to-get-pregnant-lady. I have no idea what I’m supposed to do right now…but I don’t want to go back to the HbA1cs of yesteryear. I just don’t know how to do this.

What do I hope you don’t see? Not much. I don’t think you can help me unless you know what my life is like, for real. I spent way too many years feeling ashamed for the food that I binged and the blood tests I never did and the fake numbers I put in the logbooks and the exercise I didn’t sweat and the insulin I did or didn’t give…once I finally put all of that DOWN, I don’t care that you see it. In fact, I need you to see me – just as I am. I don’t do the unhealthy things as much these days, but sometimes I don’t make the healthiest choices in the world. I’m not going to hide. Don’t try to make me feel bad for what I am, and what I do. Join with me. I need your help, and I’m worth it.

p.s. if you could wait until the end of my appointment to take my blood pressure, that would be awesome. Not only do I have the whole white coat syndrome going on, but I’m always running late, cruising across the Golden Gate Bridge, frantically searching for a parking spot, and running up to your office, breathless. I bet my BP will be much closer to what it should be if you give me a few minutes to calm the hell down. Parallel parking is rude.

 

Here’s where to find all kinds of Share and Don’t Share posts!

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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??


what they should know

May 18, 2012

I’m not stupid. My blood sugar is 40 mg/dl.

I’m not a bitch. My blood sugar is 398.

I’m not a whiner. My blood sugar is 285.

I’m not a spaz. My blood sugar is 52.

I’m not paranoid. My blood sugar is 36.

I’m exhausted. My blood sugar just dropped from 357 to 102 in 2 hours.

I can’t make sense of the sentence I just read 10 times on my computer screen. My blood sugar is 45.

I just started a fight with the woman I love, even though I know I’m wrong and she’s right. My blood sugar is 259.

I’m enraged. And crying. And hopeless. My blood sugar has been riding between 250 and 325 for 12 hours and nothing I’ve done has made a damn bit of difference.

I’m overwhelmed and can’t make a decision. My blood sugar is 55.

I am terrified and I’ve eaten 120 carbs. My blood sugar is 67.

I wish I could just feel my “real” feelings, and not have to wonder whether I really feel the emotions I think I feel, or whether the feelings are caused by the amount of sugar in my blood.

I’ve been called “emotional” many times throughout my life. I’ve never been ashamed or felt bad because of my emotions, and in fact I’ve been glad to feel them–the real ones. But I wish I knew how much of my emotions are due to wonky BGs and how much is really me, my emotions.

The BG-related emotions are fake to me. Imposters.

It’s really hard work to pull myself together and not completely freak out about the emotions that accompany high or low BGs. It feels like a huge load to carry.

And sometimes, I AM just stupid or bitchy or whiny or spazzy or paranoid or exhausted or confrontational or enraged or overwhelmed or overeating, and my blood sugar is a so-called perfect, normal 104. But I don’t want to hear anything about it from anyone. There. I said it.

WTF.

For other What They Should Know – Friday 5/18  Link List.

D-Blog Week 2012, Day 5: Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.


a sweet ride

May 10, 2012

So we bought a new car a couple weeks ago. Our weekly commute mileage, the price of gas, work schedules of me and A, and Ms. Diva’s ever-intensfying school, activity, and summer camp schedule made it imperative that we do something, instead of continuing to talk about doing something. We ended up choosing the new PriusC, and we totally love it.

Of course, having type 1 diabetes and being a primary driver for our family means I’m looking for certain criteria in any potential new car. Of utmost importance: storage for the sugar products I like to have close at hand in case of lows. The PriusC provides plenty of room for this.

Four 4.2 oz. Juicy Juice boxes fit in the front console!

Four juice boxes in the glove box, too.

Both front doors also have spots especially for bottles of glucose tabs! (okay, for water bottles, but whatever. They’re perfect.)

A little bit of non-sugar sweetness: Ms. Diva & the new car

I am thinking that I may need to put some of the juice boxes into a small cooler pak instead of the console to keep them from boiling during the summer months, but that’s no big.

It’s really nice to have a car that we can trust when I’m driving so much. And it’s equally good to know there’s plenty of room for my sugar stash. 🙂

***Toyota, Nestle, and Target have not paid me or provided any product(s) (!) for me to write this. I’m just thrilled with our recent car purchase, and these are the products I use to bring my blood sugar back into range.


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.


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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