Thursday, March 23, 2017

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.

Wednesday, January 25, 2017

Diabetes Day Off....

“Closed”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.....

Wednesday, January 4, 2017

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.

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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.

Wednesday, December 14, 2016

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.

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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!! **

Monday, November 28, 2016

Between Big and Napping…

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

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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…..

Friday, October 14, 2016

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.
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  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??

Thursday, October 13, 2016

What Would You Do If . . . .

Question-Girl-2400pxWhen I was a tween . . . well . . . when I was a tween the word “tween” didn’t exist, actually.  But that’s beside the point.  Anyway, when I was a tween we had a favorite game at sleepovers called “What Would You Do If . . . “.  Shocking scenarios were imagined and we had to confess what we would do.  For example, “what would you do if you were walking home from school with insert name of current crush here and . . . HE TRIED TO KISS YOU?!?!?!”.  As you can imagine, our tween selves did a lot of giggling and blushing but not a lot of sleeping at these sleepovers.

As silly as this game was, it turns out What Would You Do If was somewhat useful.  Because living with diabetes kind of has me in a constant round of WWYDI. 

What would I do if my blood sugar crashed at 2a.m.?  I keep a jar of GlucoLift on my night table.

What would I do if I was traveling and my bottle of insulin broke?  I pack a spare bottle or two.

What would I do if my blood sugar went dangerously low and I passed out?  We have glucagon in Pete’s dresser drawer and also in my purse.  And it isn’t even expired!!

What would I do if my pump had a major meltdown and stopped working?  I have a old pump as a backup.  I also have some syringes and long-acting insulin. (But I'm pretty sure that has expired . . . )

Living with a chronic illness means I need to prepare for the unexpected and consider what I would do in various situations.  It’s a good skill to have, even though the diabetes version isn’t as silly or fun as our tween sleepover version.  So what’s on your Diabetes What Would You Do If list?

Friday, October 7, 2016

When Worlds Collide - #AADE16

My world is the patient world, the Person With Diabetes world.  So when I decided to attend the AADE Annual Meeting this year, I was a little bit nervous.  Sure, I've been to plenty of conferences. But they have all been geared towards patients. This conference was different. This was my first diabetes conference that was geared towards health care professionals. I’d be in a whole different world than the one I’m used to.  I worried that maybe I wouldn’t fit in, and maybe I would feel like I was intruding.  I couldn’t have been more wrong.

The sessions I attended reminded me that there is a whole group of people out there that want to help us live the best lives we can.  They want to help us get the tools we need to thrive - and there was recognition that our tools are both physical and emotional.  It’s hard to pick a  favorite session because they were all so good.  But I think I’ll go with “Culinary Medicine Helps Overcome Hurdles to Healthy Eating" presented by Leah Sarris, Program Director for the Goldring Center for Culinary Medicine at Tulane University.  I loved hearing about programs in which patients come in and learn how to make healthy foods that are less expensive and quicker to prepare than zipping through the drive-thru.  It’s easy to see that learning these skills sets a patient up for much more success than sending them home with a vague order to “eat more lean protein and vegetables”.

I also spent a little time at the DiabetesSisters booth and I was thrilled to see how excited the CDEs I spoke to were about the peer support we provide.  I’m always careful to explain that our PODS meetings don’t include any medical  advice, but everyone I spoke with understood that already.  I didn’t need to explain myself or the things I write about or volunteer for.  I was just welcomed and accepted as part of this conference, and it felt great.

I’ve come away considering the patient world vs the HCP world.  Hours put in to managing diabetes.  Knowledge learned and shared.  A desire to make tomorrow better than today.  Which world am I referring to?  That of the patient or that of the educator?

The answer is both. When what I thought of as two worlds collided, I saw it isn’t about the PWD world and the CDE world.  It’s about the world we share together.  And I’m happy to have so many talented educators out there, dedicated to making our journey through this life with diabetes as successful as possible.  Thank you, #AADE16, for making a first timer feel like she fit right in.

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(Okay, okay, it wasn’t all sessions and education.  Just as with patient-centric conferences, there was time for some silly fun too . . . . . )