Why Don't You Change it Out?

“Ouch!”

From the moment I inserted the infusion set, it hurt.  Not a constant throbbing pain, but a soreness that spiked up every time something brushed up against it.

“That site still hurts?” Pete asked.  “Why don’t you change it out?”

I can tell you exactly why I didn’t.  This sore site was working really well.  You know what I mean, that blissfully flat graph on the CGM that can be so difficult to achieve.  There was no way I was wasting a good site just because it hurt when something touched it.

Let’s read that last sentence again.  There was no way I was wasting a good site just because it hurt when something touched it.  The more I think about it, the more I realize how weird the way I think is.  What rational person does not try to relieve something painful?  Why is wasting a site given a higher priority than my own comfort?  Good blood sugars are important, but isn’t being pain free just as important?

Honestly, the answer is no.  I had planned to keep that painful site in until today, when it would be time to change it out.  I did get a bit of a reprieve towards the end of the day yesterday when I started to struggle with unexplained highs that wouldn’t come down.  I decided the painful site was starting to go bad, so I swapped it out 12 hours ahead of schedule.

It’s nice to be back to an infusion site that doesn’t shoot stabs of pain every time it’s touched.  But I can’t help being annoyed with myself because I value a stupid infusion site more than I value my own comfort.

Turning a Failure into a Success....

Yesterday was not really my best day.  I got engrossed in a project and it was late afternoon before I realized the only thing I had to eat or drink was my morning cup of coffee.  It’s definitely a weakness of mine - the fact that I can get so absorbed in what I’m working on that hours fly by unnoticed.

I was pretty annoyed with myself as I changed out of my pajamas and hopped into the shower while realizing it was almost time for dinner and I hadn’t gotten to the store to pick up something to cook.  And I was starving, considering I hadn’t eaten all day.  A whisper of a thought drifted through my mind…….”hadn’t eaten all day, great time to do a finger-stick and calibrate”.  My finger-stick came back one point off from my CGM.  And according to my graph, I had stayed between about 80 and 120 all day.

To which another whisper of a thought replied…..”well, look, a basal test got done today, and those daytime basals are spot on”.

Now I don’t recommend getting distracted and skipping breakfast, lunch, snacks and water all day.  And I did make sure I had a (fairly) balanced and (somewhat) healthy dinner.  But instead of beating myself up for failing yesterday, I’m going to cut myself a break this one time.  After all, I did manage a very successful test of my basal rates.

Box of Needles.....

When I was in high school, I didn’t want my friends to know I had diabetes.  I did everything I could to hide it, pretending I was just like the other kids.  But as I went off to college, I felt I had a fresh start.  I didn’t know anyone who was going to the same college I'd be attending  So I felt that telling classmates I had diabetes wouldn’t be awkward, since I hadn’t been hiding it from them for years like with my high school friends.

The fresh start worked and I no longer hid diabetes, but I also didn’t talk about it much.  I was still the only person I knew who had diabetes.  And it still made me feel different, and also ashamed because I knew I wasn’t doing very well with my diabetes management.  So even though I wasn’t hiding it, I wasn’t exactly loud and proud either.

One evening I was at a friend’s apartment for a party.  The bathrooms in our on-campus apartments had storage closets with sliding doors for stuff to be stowed.  Someone had left the sliding door open, and I couldn’t help but notice an oh-so-familiar-to-me box of syringes.  I wondered who it could belong to and I couldn’t get it out of my head.  So I asked my friend about it.  As it turns out, his roommate, who I didn’t know all that well, had diabetes.  “Yeah, he always ends up in the hospital because he'll eat a big bag of M&Ms.”  I was kind of shocked.  Shocked because I wasn’t the only one with diabetes.  Shocked because I wasn't the only one who wasn't doing very well with my diabetes management.  And also shocked because this poor guy kept ending up in the hospital.  After all, I ate more than my fair share of M&Ms as well, but I was okay.  I couldn’t imagine what I was doing, or actually not doing, could land me in the hospital.

I wish I could say this was a wake-up call and I started working harder at diabetes.  But that wouldn’t come for many years later.  I wish I could say I talked to this roommate and commiserated about life with diabetes.  But I didn’t.  I didn’t know how to.  I didn’t have the tools.

I honestly believe things would be different for me if I was a college student today.  I lacked support back then, but today support is ready and waiting.  One great source is The College Diabetes Network.   They have launched Off to College Booklets for students and parents. You can check out a preview of the Parent Booklet and the Student Booklet and can request free copies to download here.

I really wish resources like these were around when I was in college.  And I wish my college had been a part of The College Diabetes Network.  Maybe it would’ve helped me feel comfortable enough to talk about diabetes with my friend's roommate.  And maybe, all these years later, we’d still be in touch.

Instead I wonder how things turned out for him and hope that he’s doing well.

Diabetes Day Off....

Pete and I have often discussed giving me a Diabetes Day Off.  Of course, it wouldn't really be a day off from diabetes because that just isn't about to happen any time soon.  But the idea is that Pete would take over all of my diabetes tasks for a day.  When my blood sugar needed checking, I'd give him the finger (so to speak) and he'd do the rest.  He would do all the carb counting and I'd happily let him program the bolus on my pump.  He would follow my CGM data on his phone.  I'd even put him in charge of a site change if I needed one.  Basically diabetes would be out of my hands (and hopefully off my brain) for one complete day.

As I've said, we've talked about this often.  He's even gone as far as to say "Let's give you that Diabetes Day Off on Saturday.".  But as soon as I agree, he begins to think of reasons to postpone.

I get it.  I'm sure the thought of doing diabetes is scary for him.  Insulin can be very dangerous, and too much or too little can have some very serious consequences.  I'm pretty sure he is terrified of really hurting me.  And if I take a moment to try to see it from his perspective, I totally get it.

So onward we go.  He is a fantastic supporter and he helps out a lot.  I often give him the finger (so to speak) and he'll do a sugar check.  When I'm low he'll get me the juice or candy.  But the overall diabetes management continues to be all mine, all day, every day.  And I guess I'm okay with that.  I don't want to put stress and pressure on him to take over when it makes him so uncomfortable.

It sure is nice to dream about a Diabetes Day Off though.....

Choosing UnConference

About a year ago I had a decision to make.  I could attend JDRF Government Day or I could attend The Diabetes UnConference.  They overlapped in 2016 so I could not attend both, as I had in past years.  It wasn’t an easy choice to make.

Government Day is a great event, focused on advocating to our elected officials in their offices on Capitol Hill.  We educate them about diabetes and the need for continued government funding.  We educate them on issues they will be voting on, explaining why these issues are so important to people with diabetes.  It is a great event and I’ve felt extremely lucky to be involved with it for several years.

The Diabetes UnConference is also a great event.  It is a peer to peer conference where the attendees set the agenda.  More importantly, the attendees are the experts.  We learn from each other.  We share openly and honestly with others who are going through many of the same things we are.

So, as you probably already know, I ended up picking the UnConference.  Both events were important and both were places where I felt I could make a difference.  But in the end, I thought about the huge backing and large reach that JDRF has.  I knew there were others who could attend Government Day in my slot.  They would do a great job getting our message across.  And they deserved their chance to attend.

On the other hand, my perspectives and experiences are my own.  I am the only one who can share them at the UnConference.  And if doing so helped just one person feel understood and less alone, then being there was necessary.  And so, I chose UnConference, and never regretted the decision for a minute.


This year I will be returning to the Diabetes UnConference as a facilitator.  I’m nervous, of course, but I’m so excited for the chance to hopefully help even more.  I’m grateful for the opportunity to help make the conference the best it can be for everyone attending.

Time is running out for you to choose UnConference.  The deadline to register is Tuesday, January 24th.  The deadline to book your hotel room at the special conference rate is just a week away on Tuesday, January 10th!!  So now is the perfect time to choose UnConference.  I'm sure you will find it the right choice.

Embracing Change…….

Remember when my hard drive bit the dust two years ago?  I invested in a new PC.  A pretty pricy one that was supposed to be great.  Except it wasn’t.  It was a LEMON.  Within a month it was sent out for repair.  I got it back 5 weeks later and absolutely nothing had been done to fix it.  After fighting with the manufacturer, a tech was sent out who replaced the mother board and fixed it.  But it’s never been right.  Little random weird problems happen intermittently, and lately they began to happen more and more.  I decided it was time to cut my losses and move on.  And I quit my long Windows history and went with a shiny new touch-bar MacBook Pro.


I couldn’t wait for it to arrive!  It took four long weeks but at last it was here.  And I hated it…….

Everything was different.  I had to think about how to do things I did mindlessly on Windows.  Everything took me three times longer to accomplish.  And I may have cried.  Several times.  I do not deal well with change.

But it’s been two weeks and I am over the drama.  I love my new Mac.  I can do lots of stuff mindlessly again, and every day it feels more and more normal.  And the adjustment has been a good lesson.

I started pumping in 2008.  And I have upgraded my Medtronic pump many times through the years.  New features have been added, but the pump has remained much the same.  I can use it mindlessly.  I can do a quick bolus or clear an alarm without even looking at it.  It feels comfortable and natural.  But next year, when the 670G is available I plan to upgrade.

The 670G will be very different from the 530G I have now (and all of my past pumps).  There will be a learning curve.  Things won’t be mindless.  I won’t be able to do things without looking.  I hopefully won’t cry, but I am afraid I might hate it for the first week or so.

But that’s okay.  I’m going to try to remember my Mac transition.  I will try to embrace the change.  Because, really, change is good.  Change helps us grow.  And I need to learn not to be so stuck in my ways.

** My Medtronic disclosure can be found here. **

** Second disclosure: I maybe have only 99% embraced the Mac change.  I am writing this post from my old PC.  The one program I can’t seem to give up is Open Live Writer and I have yet to find a good Mac equivalent.  But suggestions are more than welcome!! **

Between Big and Napping…

The other day I was wasting time on Facebook and I came across this . . .

flipflap - 12/28/2015 1:31:47 AM

And I chuckled and thought about how nice it would be to take a nap and then I moved on.

I later came across this post from Riva Greenberg about advocacy burnout.  And it resonates with me.  As always, Riva has a remarkable way of always getting to the heart of what I’m feeling.  November is Diabetes Awareness Month, but this year I don’t feel that I’m “going big” like I have during Novembers past.  I’m tired and maybe a bit jaded from the years I tried so hard to promote and educate and raise awareness and felt like I was screaming into a void.  That the only ones listening were us, the DOC, the ones who already get it.  I’ve felt bad about feeling this way, but once again Riva has reminded me that this is part of being human and it’s okay.

That isn’t to say I haven’t been working on stuff.  I’m part of a couple new projects - one that has launched and is shaping up nicely and one that is still in the very beginning stages.  I’m really excited about both and will be telling you more very soon.  I’m also busy off-line with support groups and events and in-person stuff.  I’m not exactly “napping”  yet.

I’m here.  Somewhere between Big and Napping.  A little bit glad that Diabetes Awareness Month is almost over.  And for now, right where I think I need to be…..

Why I SHOULDN’T do the Big Blue Test…

The Big Blue Test starts today, and I’m certain you can find numerous posts around the DOC telling you why you should participate.  But it’s Friday and I’m tired and cranky and probably need some more coffee (or a cocktail but it’s too early for that, right?).  So I decided to let my cynical narcissistic exercise-hating side take over and come up with some reasons why I shouldn’t do Big Blue Test.  Please read each lazy-ass excuse in the most whiney voice you can conjure up.

1. I can’t find any information on what Big Blue Test even is.  Wrong.  There is a whole post right here that does a great job of explaining Big Blue Test. It even has a video.
2. It takes too much time.  Nope.  It takes as little as 14 minutes.  That’s less time than a mid-day Starbucks run.
3. Nobody else is doing it.  Untrue.  More than 100,000 people have done Big Blue Test since it launched in 2010.
4. If so many other people are doing it, nobody needs me to participate.  Incorrect.  The goal this year is to reach 150,000 entries.  That is a lot, and every single participant matters if the goal will be reached.
5. There is no benefit to me.  False.  On the average, people doing Big Blue Test see their blood sugar drop by around 20%.
6. Okay, but there is no benefit to anyone else.  Erroneous, and also not very narcissistic, by the way.  The truth is, each Big Blue Test logged results in $3 donated to diabetes charities.  $1 each goes to DiabetesSisters, We Are Diabetes and Riverside Community Diabetes Collaborative.
7. It is way too hard to log the results.  Inaccurate. You simply answer the quick form found to the right of this page.  Or, you can download the Big Blue Test app to your mobile device for even easier logging.
8. I don’t have diabetes.  Okay, so obviously I do.  Even the cynical narcissistic exercise-hating side of me.  But if you are reading this and don’t have diabetes?  You aren’t off the hook.  Look at question 2.  If you answer Yes, fields pop up to record your blood sugars.  And if you answer No, you won’t see those fields but can still record your Big Blue Test participation.

Well, son of an expletive, it looks like my cynical narcissistic exercise-hating side has run out of reasons not to do the Big Blue Test.  There is no reason I can’t manage an entry a day from now through November 14th.  And the same goes for you, right??