The Blame Game - #DBlogWeek Day 3

We are halfway through Diabetes Blog Week already!  I wanted to take a minute today to send out a thank you to Stacey Simms for including me on her latest episode of Diabetes Connections.  If you’d like to listen to the episode, you can check it out here.

On to today’s topic, The Blame Game. Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! (Thank you, Brian, for inspiring this topic.)



My goodness the world loves to judge and blame, don’t we?  I can write for days on this topic, but instead I think I’ll stick with the one blame that makes me the most angry.  The Complications Blame.

My distant relative had diabetes and had his legs amputated…..but he didn’t take care of himself.

You’d better take good care of yourself or you’ll go blind.

People with uncontrolled diabetes will get complications.

I swear, I feel like if I hear this one more time, I’m going to lose my mind.  I mean, first people with diabetes get blamed for having it, and then get blamed again for having the complications that it brings.  Listen up world - it doesn’t work like that.  Nobody causes their own diabetes.  And nobody causes their own complications.  Our bodies and our condition is to blame.

So here is what that puppet, who is smarter than the general public, would say……

My distant relative had diabetes too.  (Period, end of statement.)

You’d better take good care of yourself.  In fact, we all should take good care of ourselves.  Want to go for a walk together and then go get salads for lunch?

Some people with diabetes will get complications.  And some will not.  And I love you, so I hope you won’t.  But if you do, I’m here for you.

You can find more The Blame Game posts listed here.

What is Diabetes Blog Week? Click here for an explanation and to sign up. You can also check out the Participant’s List here. And don't forget to check out the DBlogWeek Facebook page here.

Language and Diabetes - #DBlogWeek Day 3

Welcome to Day Three of Diabetes Blog Week. If you have signed up to participate, please check the Participant’s List to make sure I’ve added your name and linked your blog correctly. I try my hardest but the chances are slim that I didn’t mess up an entry or two - especially since we are up to 125 participants as of right now. So please email me if your listing needs to be corrected and accept my apology for the error. Also if you are blogging along with DBlogWeek but haven’t officially signed up yet, please do so here so I can add you to the participant’s list. The list will remain available well after Diabetes Blog Week is over so I’d love to include your blog on this Blog Roll of sorts.

Our topic today is Language and Diabetes.  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

Words are so important.  Words can hurt so badly.  I’ve been accused of being “too sensitive” and maybe it’s true.  But I take perceived judgements and criticisms to heart.  I’ve cried more than once over things said to or about me - both on-line and off.

With that in mind, I try really really hard never to do that to anyone else.  (And if I have even written or said anything that has hurt you, I am very sorry.)  I try really hard not to ever say or write anything that might sound critical or judgmental.  I try to choose my words carefully, even in the smallest of ways.  For example, I don’t mind being called a diabetic, but since I know some people do, I try to always say person with diabetes instead.  I no longer test my blood sugar, but instead I check it so others won’t feel like it’s something they can pass or fail (even though saying test would be okay with me).  I don’t care if you eat low carb or a billion carbs, if it works for you, who am I to criticize.

I guess what I’m really trying to say is this:  In the DOC, and in life in general, I wish we could all try to be a little kinder to each other.  People need to realize the power of their words.


Ready to read more perspectives on Language and Diabetes?  Click here for a list of posts.

What is Diabetes Blog Week?  Click here for an explanation and to sign up.  You can also check out the Participant’s List here.

Tired . . . .

I thought I was just distracted and busy.  Wrapped up in the kitchen remodel and the excitement and stress that goes along with it.

Then I thought I was just having a bit of writer’s block.  Feeling like everything I could say I’ve already said before.

Then I felt guilty.  What kind of diabetes blogger finds herself at a loss for words during Diabetes Awareness Month?

But the more I think about it, the more I realize that I’m just very tired.  Tired of all the finger sticks.  Tired of the carb counting.  Tired of feeling too high and too low.  Tired of waiting for better.  Tired of learning to adjust to new devices and new treatments.  Tired of the fight and the effort and the every single day of it all.

This will pass.  It has to, because diabetes isn’t going anywhere.  I’ll find my motivation again.  I know I will.  But today, still, I am just plain tired of diabetes.

I Shouldn’t Be Here . . . . .

This month marks a pretty big milestone for me.  I was diagnosed with Type 1 in December of 1979, and although we don’t know the exact day I’m pretty sure it was more towards the beginning of the month.  (I spent a week in the hospital, and I don’t remember any Christmas stuff happening so I think it was well before the end of the month).  So I’ve been marking the occasion toward mid-December each year . . . . . and here we are, smack in the middle of December.

This year my diaversary is a biggie.  I was 11 years old when I was diagnosed.  That was 33 years ago.  So I have lived with diabetes for 3/4s of my life.  That feels like a very very long time.

I’ve been struggling with a major case of writer’s block for about a week . . . . not just when trying to write about my diaversary but while trying to write about anything at all.  And I realize I’ve been struggling with the thoughts and emotions surrounding this diaversary for at least a month now.  Because honestly, when I think about having survived diabetes for 3/4s of my life, one phrase keeps echoing through my head . . . .

I shouldn’t be here.

I shouldn’t be here.  I guess that must sound  pretty morbid.  But I can vividly remember laying awake many a night during my late teens counting up how many years I had left to my life.  Ten . . .  maybe fifteen . . . . but surely the last few would be filled with all of those terrible complications that had been drilled into my head over the years.  I had watched my aunt become sicker and sicker and eventually die from diabetes complications, and I thought it was a preview of my own unavoidable fate.  I’d be lucky to make it into my 30s.   I’d never see my 40s.



But here I am.  Forty-four years old and complication free.  Every time I think about being complication free a weird wave of guilt washes over me.  It comes from knowing that for so many years I ignored my diabetes management almost entirely and knowing that many who worked much harder and have lived with diabetes for a much shorter time have developed the complications I’ve somehow managed to avoid.  Why them and why not me?  Genetics, environment, or just dumb luck?  Who knows.

Thirty-three years.  3/4s of my life.  All with Type 1 diabetes.  I’m very grateful for the life I have.  I’m thankful to be here and to be healthy.  I’m lucky to be able to have hope that I may still have another 30 or 40 years to my life-span.  I’m proud to try to be a strong patient voice and to show that diabetes doesn’t have to stop you.  But honestly, lately I’ve been feeling so tired of walking the diabetes road for more than three decades.  I’ve been angry at the time and energy and emotions it demands.  I’ve been fed up with diabetes.  I know this will pass.  I know I’ll get back to a better place emotionally.  I suppose after 33 years, maybe it’s okay to rage just a bit?  Because after all, I shouldn’t be here.  But when all is said and done, I’m so glad that I am.

Haikuabetes

Health haiku. Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like.

My haiku literally just flowed out in less than a minute.  Admittedly, it’s somewhat dark, but it is honest and real and it ends on a high note.

Wow, thirty-two years.
I thought I’d be dead by now.
Never stop striving.

Complications, Luck and Guilt

It’s been about four years since my ophthalmologist first found some tiny bleeds in my eyes.  And by “tiny” I mean so minuscule that I just need to go in every six months for a dilated exam to keep tabs on their status.  Each time I go in, Dr. C either finds no change at all or finds that one leak has cleared up but another itty bitty leak has formed.  Thursday it was time to go in again, and I’ll admit I was feeling very nervous about what she would find this time.  Because honestly, lately it feels like I’ve been getting more bad news than good, and so I’ve got quite a pessimistic outlook these days.

This time, however, the news was good!  Really good!!  Both eyes are now 100% clear of any leaks and bleeds or any other problems other than my astigmatism and extreme nearsightedness - neither of which are diabetes related.  Although Dr. C feels we could go back to yearly dilations, she prefers that I continue to come every six months.  This is because I’ve been diabetic for such a long time, and she’d really like to catch any problems as early as possible. Now let me tell you, I really despise getting my pupils blown up as large as they can stretch and then being forced into what feels like the equivalent of staring straight into the sun on a clear summer day.  But I do agree with Dr. C about catching things early, so I made my appointment to go back in September for more torture my next exam.

As I left the office, something Dr. C said stuck with me.  She said “Although you’ve had diabetes for so long, I’m not that worried about you because you have such great control.”  That statement has been nagging at me since last week.  While it’s true that my A1Cs have been just where we want them to be for almost four years, that doesn’t mean my control is always great . . . .  because as we all know, a bunch of crappy numbers can still average out to an okay A1C.  But even if we assume that I did have great control since 2008, that certainly doesn’t make up for the 20+ years I spent with less than stellar (to put it mildly) control.  With this in mind, I told her that I think the whole complication thing comes down to a little hard work and a whole lot of luck.

For me, this is where the Major Complication Guilt sets in.  I’m very glad to be fairly complication free after 32 years with this disease.  I'm overjoyed that my eyes are in great shape once again.  It really is quite a blessing - but that makes me feel guilty because it’s a blessing I don’t feel I deserve.  I have plenty of friends who have worked much harder than I did over the years, and yet they are battling complications from this beastly disease.  Why them?  Why not me?  And why does diabetes have to pile on a boatload of guilt along with all of its other garbage??

Idiotic Sunday Evening . . .

Last night, I was a total idiot.  Over and over again.  It was like I threw everything I knew about diabetes management right out the window.  I have no excuses.  I was just plain stupid.

It started late afternoon when I did my site change.  An hour later, my CGM high alarm went off and a finger-stick showed me at 225.  I decided the spike was due to the chips I ate with my tuna sandwich at lunch.  The pump said I didn’t need a correction, so all was well.

An hour later, I was at 237.  I took a correction and figured things would start heading down.  After another hour, I was at 235 and by this time we were at my parent’s house for dinner.  I started to wonder if perhaps my new site was bad.  But (Idiotic Move #1) I bolused a bunch more insulin and ate dinner anyway.

After dinner, my CGM showed me soaring towards 300.  Of course, there was no way I was going to be easting dessert.  And then my mom said “I have a special treat tonight.  I made a pound cake and I have strawberries and whipped cream.  We can pretend it’s summer and eat strawberry shortcakes.”  I blame Idiotic Move #2 on the fact that the snow is driving me slightly insane.

This is a snow pile in a parking lot near my house. I'm so not kidding. You'd be insane too.

That’s right.  You guessed it.  I SWAGGED a bunch more insulin and ate strawberry shortcake.  Even though my CGM said I was nearing 300.  And no, I hadn’t tested since before dinner because I didn’t really want to see that I was actually well over 300.

By now it was clear to me that the new site was crap and I needed to change it out immediately.  So what did I do?  Did Pete and I go straight home?  Nnnoooooooo, we took a quick trip to the grocery store instead.  (Idiotic Move #3, for those keeping track.)  Clearly my pressing need for an onion and two peppers was much more important than insulin, right?

So, we grabbed our bag of groceries and headed home.  The minute we walked in the door, I ran upstairs and did a site change.  Which seems like the smart thing to do, right?  Nope.  Because (Idiotic Move #4) I didn’t test my blood sugar before doing the site change.  In fact, I hadn’t tested my blood sugar since before dinner.  And wouldn’t you know it, the exact minute I filled the cannula on the new site, my CGM alarmed.  I looked down to see “Fall Rate” flashing at me, and the CGM reading 230 with two rapid down arrows.  The old site has been working fine.  A finger-stick showed my blood sugar was actually 147 - which would seem like a good thing.  Until you take into account all of the insulin I had been (idiotically) swagging all evening.  I had almost 6 units on board.  And the juice I drank did not keep me from hitting a blood sugar of 38 by 9:30 pm.

Why did I do such a crappy job last night?  Why didn’t I test more?  Why did I eat dinner and dessert instead of waiting to get a handle on my blood sugar first?  I don’t know.  I’m embarrassed to say I have no good reason for any of it.  I had a very Idiotic Night with diabetes.

Perpetuating the Myths

Yes, we look exactly like this!!

On Tuesday we were all anticipating the huge snowstorm that was expected to (and for once did) hit New England.  Pete and I have our weekly ballroom dance lesson on Tuesdays and I noticed my instructor had jokingly put the following in her Facebook status:

“Getting ready for snow- ugh. Remember, cancelations will not be accepted, just walk to the studio! I'll be there with hot cocoa and dancing!”

Because I can never pass up a chance to be a wise-ass, I left the following reply:

“If you make me drink hot cocoa, we're going to have to do Swing for the entire 45 minutes or my blood sugar will skyrocket!! ;)”

She joked back, we had a few laughs and decided she’d make me some coffee instead, and then some other students started leaving smart-aleck comments for her as well.  And that’s when I began to have second thoughts about my comment.

It’s fine to joke about the hot chocolate with Juliet, because after years of lessons with me she understands a lot about diabetes.  She’s one of those great people who is sincerely interested, asks intelligent questions and listens to my answers and explanations.  She never judges, and heck, she even has her friends bring me things from Germany to treat lows!

But what about the other people who read her Facebook page.  Looking at my comment they will probably think that I can’t have hot chocolate because I’m a Type 1 Diabetic.  And while it’s true I usually pass it up because I don’t find hot cocoa as bolus-worthy as a block of actual chocolate, the fact is if I wanted the hot chocolate I could certainly count the carbs and dose for it.  You know that . . . . I know that . . . . BUT most of the people reading her Facebook page don’t.

Was it wrong of me to make a joke like that?  We grumble a lot about the Diabetes Police, but did I just give them more ammunition?  Have you ever made comments in jest that you later regretted because they perpetuate the myths we are fighting so hard to banish?

Scary Low . . .

Usually lows don't bother me. Usually my body handles them really well. Usually I eat a little something or drink a little juice and everything is okay.  Usually.

Sunday night was not usual.  Sunday night was damn scary.

Much of it is very foggy.  I remember sitting in bed with my pump and meter.  I couldn't quite figure out what my pump was.  I kept turning it over and around, trying to figure out which end was the top and which was the bottom.  I kept pressing buttons but none of the screens made sense.  I also didn't know how to turn on my meter or what it was supposed to do.  Pete was wide awake beside me, telling me it was okay and I should drink my juice.  I told him I couldn't, but thank goodness I drank it anyway.  He said I kept saying I didn't know what happens next.  I think I resisted drinking the juice because even though I was confused I knew that I generally stay away from juice because it raises my blood sugar.  I also think when I kept saying I didn't know what happens next I was trying to say that I knew I had to punch the carbs from the juice into my pump and bolus but I couldn't figure out how to do it.  Out of frustration, I kept begging Pete to show me how to work the buttons.  He calmly told me he didn't know how and that I should just relax and drink the juice.

I remember I kept disconnecting my pump because I didn't know how to work it.  Then I would reconnect it because I knew I'm always supposed to wear it.  Pete ran downstairs and got a spoonful of frosting for me to eat.  I suddenly decided I had to check my blood.  Pete said it was a bit soon to test again but to go ahead and do it anyway.  Some how I managed to remember how to work the meter.  The screen flashed 33.  Somewhere in my mind, that number seemed familiar.  I guess I was starting to come out of the fog, because I asked for another juice box.

After I downed that, things really started to clear up.  I could remember how to work my pump as well as my meter.  According to Pete, I had woken him up and told him I needed help.  (Thank goodness for that!!)  According to my CGM log, my low alarm went off at 10:51 telling me I was 55.  It rang again at 11:12 to say I was 41.  At 11:31 it reported that I was below 40.  I don't remember hearing or clearing any of those alarms - I just remember dreaming about being on Cape Cod.  According to my meter, I tested my blood sugar at 11:35 and it was 33.  That's why the number 33 seemed familiar when I did the second test at 11:46 and was still at 33.

Once the fog cleared, I realized I was soaked with sweat.  The chills hit hard and my teeth started chattering.  I was pretty freaked out by what had just happened.  I felt terrible for disrupting Pete's sleep on a work night and for frightening him so badly with my incoherent ramblings.  At midnight we tested again and I was up to 49, and three hours later I was 172.

I can't tell you how lucky and blessed I feel that Pete was there.  I am so proud of how calm he stayed through the whole thing.  He held it together and did everything right.  He was *thisclose* to calling for an ambulance when the fog cleared and I started making sense again.  I can't imagine how scary the whole thing was for him.

Yesterday I was wiped out and freaked out all day long.  Pete called me several times more than he usually does to check on me.  Every time I heard his voice, I started to cry.  From gratitude for what a wonderful care-giver he is.  From guilt for putting him through such a terrifying situation in the middle of the night.  From pure exhaustion that made me more emotional than usual.

I've always handled low numbers well.  A few weeks ago I woke up with a blood sugar below 20.  I know, because I tested three times to confirm.  13, 19, 16 were the numbers my meter reported back.  I was sweaty, but clear-headed and otherwise fine.  I drank juice and petted the cat until my blood sugar went back up to 83.  Then I went back to sleep.  Easy as pie - which would have come in handy with a blood sugar below 20!!

Why was that 33 so terrible and that 19 no problem?  Who knows?  Maybe The Big D was cranky Sunday night.  It's been around 20 years since I've had a low that left me so out of it.  I honestly hope it's 20 more before the next Scary Low.

Judgements . . .

Yesterday was a pretty big day.  We closed on a refinance of our mortgage, locking in the current low interest rates and knocking five years off our payments.  Then we went off to our weekly ballroom lesson.  But we felt like celebrating.  Since we've been working so hard on our exercise and diet plan, we decided to treat ourselves to dinner at a great Italian place just down the road from the dance studio.  And we decided we would order whatever we wanted.  In my case, I knew it would be Gnocchi alla Vodka Sauce.

I was testing my blood when the waitress came for our drink order.  I was bolusing when she came for our dinner order.  And I felt like I had to hide my meter and my pump.  I felt like if she knew I was diabetic, she would judge me when she set the huge bowl of gnocchi in front of me.  Or when she saw me accept the slice of bread Pete passed from the bread basket.  It didn't matter that my extended bolus kept my blood sugar from going no higher than 157 after eating and put my 2-hour post-meal fingerstick at 91.  Or that a slightly higher overnight temp basal and a 2am correction of a 145 blood sugar gave me a fasting of 125 this morning.  I felt like she would judge me.  She would be under the impression that a Type 1 diabetic can't eat a pasta meal.  She would become the dreaded diabetes police.

I'm proud that I can indulge once in a while and still keep my numbers fairly in line.  But I'm disappointed that my guilty conscience sees people judging me, whether they actually are or not.