Repeat

Today’s post (below) is a repeat.  The reason?  I will be back for a repeat performance of this very post, later this afternoon.  After last year’s lesson in attire, I am wearing pants today.  I managed to try on all the pants in my closet this morning which are now scattered throughout my home (read: on the floor).  Also I will be getting an earlier start (I still despise being late).  I also strategically placed my pump site higher up on my waist today but my Dexcom is on my left hip.  I do not plan on dropping my drawers to show it off…. I don’t “plan” on it.  No seriously, no drawers dropping.  Keep your knickers in your pants lady.

To all the JDRF advocates who were in Washington DC earlier this week.  I salute you.  I just want to hug and thank you all.  If you have an extra 2 minutes today (NOTE: you do have an extra 2 minutes) PLEASE click this link. It will cost you 2 minutes of your time.  This SDP (Special Diabetes Program) funding is CRUCIAL for ongoing clinical trials.  GO!

Advocacy With A Rhyme

A few weeks ago I was asked to do a Q&A with 2nd year medical students at (it rhymes with) Mt. My-Oh-My (medical hospital and school). Yesterday was the day.  I was given very little information other than this was part of the teaching program and my doctor needed info about my T1D diagnosis (June 19, 1979).  I was also told to be prepared that the students may ask some “weird” questions.  Weird you say?  Hell to the yes, count me in!

I ended up being 10 minutes late  to the meeting spot with my doctor.  I full-on ran from the subway to the hospital (I despise being late).  Taking the subway during the conclusion of the St. Patrick’s Day parade was a lesson in madness.  Out of breath, my doctor also a bit frazzled, I was led into the auditorium.  My guess is there were about 300 students. There was another doctor presenting an older woman (dare I say elderly?).  I had missed much of her presentation but as I made it to my seat, I caught that she is a fellow T1D and her doctor was giving different facts about her and asking the students what tests should or should have been performed under specific circumstances.  After sprinting to the hospital and my heart pounding in my ears, I found it a bit jarring that Cutie Oldie T1D was asked to go into detail about when she had a UTI while on vacation a few years ago.  Holy Shirt, things got graphic FAST.  Cutie Oldie T1D spoke about getting a stent in her kidney for 3 weeks and how much it hurt to pee…. (get ready to gag or skip the next few words)… and she was peeing…puss.  BLECH.  Why did I agree to this AND what the hell was MY doctor about to say about ME?!?!?  I frantically searched my brain for gross medical stuff I might have to talk about… oh this was NOT good.

My turn.  I sat in a desk chair in front of the 300 students.  My doctor struggled to find her PowerPoint presentation.  I hooked up the mic to my sweater dress.  No turning back now.  A sea of students.  I was the last part of the presentation.  Lots of yawning faces staring at me.

I looked back at the screen.  There was the paragraph I’d written about my diagnosis.  My symptoms, local hospital where I went for blood test, my pediatrician telling my parents to take me to “the best” and sending me to Hahnemann hospital in Philadelphia.  My doctor got into some specifics about the diagnosis that were not part of my story but relatively universal in many diagnosis stories.  Then, “Does anyone have any questions?”.  Ummmm that’s it?  2 questions about my diagnosis.  Yeah, I was 6.  I explained I’m about to turn 41 and I am too old to remember all the specifics but I was able to tell them some of my memories and then I was off and running.

I’m a talker.  I had the floor (well chair).  I started answering stuff no one was asking.  My doctor threw in some questions and explained things like Regular insulin and NPH.  Before I took my seat, I had heard the doctor who was running this program tell my doctor to take her time presenting because we were ahead of schedule.  Too bad you let me hear that lady, because I will fill up this whole time slot…. and boy did I.

My doctor showed an image of some of the insulin pumps on the market.  I pointed out the one I have and then it happened.  My doctor asked if I would be comfortable showing the students my insulin pump.  Ummmm. I said how I probably should have worn something different.  My doctor then noticed why I said that.  I was in black boots, black tights and a grey/green sweater dress.  Pump squished to my thigh IN my tights.  She said something about how she should have mentioned that to me earlier and I thought,  “To hell with this”.  I stood-up, turned to the side and saw a woman shaking her head “No”.   Too late.  As the words came out of my mouth I just couldn’t stop them…

“You guys ready for this presentation to get REAL racy?” and there I was with my sweater dress hiked up on my left hip while I traced the outline of my Dexcom on my thigh and my pump right next it.  I showed how I could move my pump around because my tights were holding it in place but that the Dexcom was fixed in place.  I talked and talked, looking damn flashy but knowing, this was a true chance to educate and I had EVERYONE’s attention.

I told them about how much I’d agonized for 3 years about getting a pump.  How, like so many other T1D’s, I wish I’d done it a lot sooner but that my advice to them, if they ended up in endocrinology, was not to force a pump on anyone.  Plant the seed, water it, show it some sun and then see what happens.  I needed to want a pump on my own.  I had to deal with my own issues of being attached to something, and my own issues of self consciousness, and meeting other people using technologies (especially Dexcom).  On and on I went.  I told them about how important it is for me, the patient, to work with my doctors like a team.

My doctor told them about the benefits of insulin pumps and different types of boluses. How a square wave bolus works and and I explained to them my enemy… pizza.

And then the questions… Someone asked about the psychological impact of wearing a pump.  Alleluia!  So I explained how I’ve had a pump for 14 years and how amazed and hopeful I am when I deal with kids, many times they are not diabetic and how they will tell me there is a kid on their (insert sport) team who has a pump too.  He/she is diabetic.  That’s it.  They NEVER, EVER see it as a big deal.  That it’s the parents of that kid who are more likely to see it as a big deal…. so-and-so’s kid is diabetic and HAS TO BE ON A PUMP.  I told them my belief that these generations beneath me, live in a different, much more open minded world and they (the doctors) can help foster that.

I told them how it is hard dating and being in relationships.  I can control how I present information and why I have an insulin pump but I have zero control over someone’s reaction to it and that can be hurtful no matter what age you are.  How I have no control over the internet and when you Google diabetes it isn’t a pretty picture.  How I look like the picture of health most of the time.  I am in the best shape of my life right now, but people think my being diabetic could/will mean I will go blind, have all my limbs amputated and will die when my body can no longer handle dialysis.

More questions and more screens of the Dexcom.  I explained how the Dexcom is a Godsend for me.  That I live with a dog who is useless in giving me glucagon or getting me carbs.  That I don’t always feel myself go low in my sleep and sometimes I manage to sleep through the Dexcom and how I feel “lucky” when ‘i see the graph the next day.  I poured it all out and how freaking scary being alone and treating a low can be.  My doctor explained the Dexcom arrows and I gave them my real world reactions to those arrows and how they are my very personal warning system.

I told them how I hate admitting it, but that I worry every single day about what this disease is doing to my body.  I workout like crazy because it makes me feel good, it reduces stress, and it is keeping my heart and circulation going BUT it is a battle to keep glucose levels in my target range with exercise.  I told them how frustrating this can be and how quickly the workout “high” fades when battling a dropping or rising blood glucose level.  I explained that there is a ton of trial, error, doctorly pointers and glucose tabs that dissolve in the wash in my gym pant pockets.

I ran out of time.  There was applause.  My voice felt scratchy.   Student thanked me as I walked from the stage.  Before I left I thanked them for listening and to please become GOOD doctors.  I was smirking.  I couldn’t hide it.  I took that presentation in a different direction and I flooded them with stories and information.  I shared my passion.

My doctor walked me out and informed me that 3 people in the class are T1Ds and another 2 students have siblings who are T1Ds.  She thanked me for getting a discussion started.  I’m not sure about the discussion part (it was the end of the day on St Patrick’s Day) but I did feel like I did my thing.

Advocacy.  Go.

A 6 Point Update!

How fantastic is this?

“I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”

—Edward Everett Hale (1822-1909)
American Author

LOVE it.

1.  In other news, I’m trying something new this week.  It was just a post shower whim Monday morning.  I think my tummy needs a break and in order to keep my friend laughing who thinks I’m butt obsessed, I put my pump site on my derriere.  It was at the top of my badonkadunk on the left side.  It felt a little weird at first, but worked GREAT.  Yesterday I wore jeans and it did make me a little nervous that I had to be “aware” of where it was before I peed, But for Monday- Wednesday, I didn’t feel a damn thing (Day One was the best though… wore vegan leather patched leggings.  Vegan leather pants are such an awesome marketing ploy… seriously brilliant.  No pleather here… “vegan leather”.  Brilliant).  Day One I wore a blouse that covered my bum, but this is what it looked like (red circle shows the site and the cord).  I thought it would stick out more, but it was a VERY pleasant surprise and did I mention how GREAT that site worked?  Fantastic!  Old dog, new tricks.

buttpump copy

2.  I received a new Dexcom receiver last week with the Share stuff.  Yay bluetooth!  When I was in the AP trial a few months ago, the Dexcom receiver was put into a sleeve that enabled it to have bluetooth (whole AP system works off Bluetooth).  I am thrilled the Dexcom receiver now has bluetooth as this seems like one more bridge crossed in getting to Artificial Pancreas land right?  Sunday I was on a rather crowded train and carrying way too much stuff (and this guy),

That white spot on his nose is my fave

That white spot on his nose is my fave

and the novelty of seeing my Dexcom info on my phone (which was easy for me to grab from my pocket) was rather convenient.

This was from today, not on the train.  Dog, bags, and people everywhere was a bit much!

This was from today, not on the train. Dog, bags, and people everywhere was a bit much!

3.  With that said, I did upgrade to the Animas Vibe pump 3 months ago (3 ish?).  Now, that I’m used to it, I again wonder why I bother reading reviews.  YDMV is just so darn TRUE (YOUR DIABETES MAY VARY).  This is the screen that is a game changer for me (thanks Karen H for teaching me how to set this):

IOB screen)

 

Great BG right now (Nice moment).  The part I am LOVING though is that IOB.  Wow.   THIS. IS. AWESOME.  I hit one button on this pump and BOOM, I see my BG and Insulin On Board.  Wow.

4.  I now have my second butt pump site.  I have no idea why I was squeamish about trying this.  I am currently wearing tights and took a photo to show how much this does NOT stand out.  I then realized the photo is way too risque.  Apparently I now know my limit on “putting it all out there”.  My Dexcom is on my left upper thigh/hip, pump site on left top of butt cheek and my pump is in my tights right below the Dexcom sensor.  It has worked well today and I am in a dress that is very fitted.  It amazes me that I ever worried about wearing all this equipment.  All good in the hood.  No biggie.  Yay tights.

5.  Today I officially kicked-off my JDRF Burlington Ride page.  It’s been up for a little while but today is my birthday and I want my birthday to be something productive, something positive and if I am nailed down for this biking madness…. errrr, I mean “adventure”, let’s do this right!  Birthday?  Ehhh.  Fundraising KICK OFF DAY?  Hell yes!  I have been shocked by the success today and I feel even MORE motivated to embrace this adventure (still mildly terrified though).  Bike research is going well.  Bike test ride is Sunday.  Crashing would suck (and I don’t mean BG, I mean actually crashing into a car).  Want more info?  Want to see how we’re doing?  Curious about the Ride program? Click HERE!  Do Good, Feel Good.

6.  Whew.  Last thing.  There’s a Type One Nation Summit in Long Island NY this Saturday.  The last speakers of the day are attempting this tag team style.  They are talking about their Artificial Pancreas trial experience.  Yep, Brian and I will both be there, and yes, we are speaking together.  This could be…. interesting…? The line-up of break out session and speakers is truly remarkable and I am so honored to attend.  Want more info?  Right HERE .  Originally I planned on doing a comparison like I did with Britney Spears (but the Long Island version which would either involve… Billy Joel or Lindsay Lohan).  I didn’t get to that and my friend who did all the previous photo work is in Italy so use your imagination!

 

 

 

A Wednesday That’s Really A Tuesday and a Kardashian Booty

This was going to be my Wordless Wednesday post but it’s D Blog Check day (thanks Chris) so I’m jumping ahead.  I learned to ski when I was 8 years old.  My college boyfriend got really into snowboarding and we ran around with a snowboarding crowd in the winters during my early 20s (I made a brief switch to snowboarding, broke my coccyx bone, and decided I would remain a skier).  In my early 30s, I skied inconsistently at best.  As far as I can tell, the last time I’d skied was 2008 and I broke my foot in 2009 (unrelated to skiing, tripping in high heels getting in a cab and rushing to the airport… and then wearing high heel platform boots for 2 days before I got an x-ray… woof).  Although I’d talked about skiing again, I haven’t made it happen until this winter.

For the rest of this story, you need to know the following… no matter what my weight, I have a butt.  You know that strange photo of Kim Kardashian where she is balancing a glass of champagne on her derriere?  You know, the photo that was supposed to break the internet?  If not, you may be too highbrow to be reading this blog (or you don’t have interwebs or live under a rock).  I’m fairly certain I could do that Kardashian maneuver AND also balance my pump, Dexcom receiver, my cellphone and a couple bottles of insulin simultaneously on my butt.  Yep, baby got back.

So, “back” to skiing and a big butt.  I have new ski pants this year that are snug in the waist.  Great.  They also swish a lot when I walk so I could never sneak attack anyone.  On Sunday I skied.  I clipped my pump to the back of my pants, with the pump itself on the inside of my waistband.  It seemed firm between Smartwool long undies and my new, loud swishing pants.  I skied my heart out.  I am shocked I got right back into skiing in the past month as though I’d never left and maybe, as I’m in better shape than I think I was 7 years ago, I kinda killed it.

Purple Mountains Majesty!

Purple Mountains Majesty!

As the day progressed, I felt my pump pop off my pants twice as I got off the gondola.  I blame my butt.  I sat down,  the pump got pushed upwards by my Kardashian-esque booty.  When I stood to get off the gondola, my pump had been pushed above the waistband.   Once, it slid down the back of my pants.  Once I felt it loose inside my jacket against my back.  Not cool, but my jacket unzips from the bottom so poles stuck in snow, mittens off, glove liners off, pump re-clipped, velcro on pants tightened, layers adjusted, coat re-zipped, glove liners on, mittens on, poles around wrists.  Whew.  Ski.

Second to the last run of the day, I was flying (well as fast as I could go before my rental skis started shaking because I technically needed high performance skis and believe me, I LOVE typing that.  one more time, I needed the performance package).  As I soared down the mountain singing in my head and strategically shifting my weight and the edges of the skis, I saw something in my shadow.  Something sticking out of the side of my jacket.  Oh, just my lift ticket.  Ummmm no, the lift tickets don’t clip onto a zipper anymore.  The lift ticket is now a keycard you put in your pocket and they scan you with a zapper in the lift lines (this fascinated me as once scanned, the zapper operator would say your name and chit chat.  Lovely). As soon as I realized that strange shadow waving in the breeze was not my lift ticket, I started hitting the breaks.  We’re not talking hockey stop, I hit the breaks in a pie wedge, like a beginner, and the shadow whacked me in the back of the leg.  I scooted to the side.  I stopped. I tried and missed grabbing whatever was in the shadow with my pouffy mittens. I had already tossed my poles to the ground.  I tossed the mittens there too.  I reached again and grabbed my swinging pump.  Whew.  I just stood there thinking that this was NOT the ideal situation.  I then smiled.  I’m fine.  I caught it.  This wasn’t a calamity.  I snapped a photo because based on my maturity, I started giggling to myself that my shadow could be the source of many a dirty joke.  Diabetes is so effing annoying sometimes, but I was absolutely fine.  A little freaked out, but fine.  I was better than fine, I was skiing my heart out.

skipump

So I skied down the rest of the way and thought about what I’d do.  If I’d lost my pump, that would be a horrendously expensive problem, but I could have taken the gondola down to the lodge as I had insulin and emergency syringes in my purse which I’d put in a locker.  If I’d never found my pump, I had a back-up old Ping in my purse too.  I have a photo of my pump settings on my phone.  Inconvenient and expensive for sure, but I’d live and that’s the thing…

I recently had a conversation about the concept that you can never go back.  I’m not sure I believe that.  After all these years, I returned to a sport I once loved as a child.  Oh sure I hated the cold, and carrying all that gear, but the art of skiing was always me in my zone.  My Dad would say he could hear me humming and singing as I skied past him as a kid.  I was always making up my own songs with the theme of “You can do it” (I was a creative, cuckoo little kid).  What if instead of not being able to go back, you take all that stuff you learned, stuff that’s supposedly behind you, you smush it into a ball and you toss it ahead of you?

I think it’s true of diabetes too.  You learn all this stuff, you screw up, you learn, you try again, and you don’t leave it behind.  You use it all to lead you.  You can let it beat you down and God knows I understand diabetes fear, but its also your motivation.  Sometimes your pump needs to smack you in the ass to make you slow down and then, you pull on your mittens and race ahead.