Wordless Wednesday – PROGRESS!!!

I can’t even describe how inspired I feel today (I’ve been up since 4:30am so it may partially be exhaustion, but I do feel excited).  While my brain and my heart settle a bit… here’s a pic of me last night (microphone not working and video without sound).  I definitely think I was a bit stiff and far away, my chit-chat was the most boring part of the evening, but who cares…. BECAUSE…..

Not a bad pic.  Pretty sure this is when I realized there was no video playing!

Not a bad pic. Pretty sure this is when I realized there was no video playing!



Dr Aaron Kowalski

Dr Aaron Kowalski

Dr. Aaron Kowalski.



I got to sit next to him and afterward, bombard him with questions.  If my pancreas could smile, believe me, it would have.

Pancreas from I Heart Guts

Pancreas from I Heart Guts





More information on all of this later!  And here’s some additional info about Dr. Kowalski:

Dr. Kowalski, JDRF’s Vice President, Artificial Pancreas Project.  He is an internationally recognized expert in the area of diabetes technologies, and oversees JDRF-funded research aimed at accelerating the delivery and development of the artificial pancreas systems. He has authored numerous articles in the field, including co-authoring the landmark study in The New England Journal of Medicine that revealed the effectiveness of continuous glucose monitors in T1D.

Dr. Kowalski’s brother Stephen was diagnosed with type 1 in 1977 diabetes and in 1984, Dr. Kowalski was diagnosed with type 1 diabetes.


Wimpiss Breath?

Tonight is the official kick-off for the NYC (Manhattan’s) ONE Walk which is the roll out of a whole new platform for JDRF’s Walk (the evening is called Progress to Type None).  The purpose of the event is to discuss research developments over the past year (artificial pancreas, complications, encapsulation, smart insulin, restoration, and prevention), upcoming Team Walk plans, and the new website for the walk this year (thank God)… AND guess who the opening speaker is… ME.  Guess who I get to introduce? Jeffrey Brewer (I just found this out 15 minutes ago… yikes).

Today seems like a GREAT day to shake-off all this fear stuff that has really been nagging me since my 35th diaversary last week (check out the comments section of that post… yay DOC).  Let’s face it though… I’m not going to simply shake it off (although I really LOVED Scott’s comment “Yes, thirty five years is a long time – but it’s just a series of individual days, and so far you’ve survived every single one of them. There will be many more, and I’m sure you’ll survive those too.”)  So awesome. 

So, what’s my plan, you say?

Redirecting scared energy.  Granted this is an experiment… but, I think this could work (read: OMG this better work).  I have a lot more to read at this event than I thought and I haven’t actually seen the powerpoint that I will speaking along to (terrible sentence structure by the way… ending with a preposition.  “Along to”… cringe worthy).

But here’s the really great part… I get to speak a tiny bit about Alecia’s Stem Cells and with that, I will absolutely talk about the goals of this team.  That puts me in fighter mode.  That takes me out of worry mode.  I really need to get back to outlining that part though (geez where is this day going?).

Also on a slightly humorous side note: in my introduction tonight I am supposed to state that I am our Walk’s Corporate Team CHAMPION.  When I was a kid, my brothers and I would wrestle (although this story applies to most games we played).  When someone won, they SANG (often while flexing their muscles), “I am the CHAMPION, YOU ARE THE WIMPISS BREATH”, over and over (there was a tune involved, I promise).  I still don’t even know that wimpiss breath means but it had something to do with being a wimp and it sort of sounded bad.  It is damn near impossible to think of saying that line tonight, CHAMPION,  and not flexing like a professional wrestler from the 80s and then raising my arms up and hopping up and down like Rocky (I may just do the flexing anyway).

Tonight I get to embrace my fear of public speaking yet again.

I WILL redirect my fear.

I am forced to be brave.

When you’re SCARED but you still do it anyway, that’s BRAVE. -Neil Gaimon


Houston we have a problem?


Well it’s more like Dallas. After a bunch of shenanigans with my hotel, I received a new Dexcom sensor yesterday and was back in business. I woke up this morning a little after 4:30am to the dreaded ??? There is no panic and I’m not even upset but this is a reminder of why advocacy is so important. The continued push for the advancement of medical technologies couldn’t be more necessary (well in my opinion).

And for my quote of the week (although it’s been my go to for a bit longer):

Throw me to the wolves, and I’ll return the pack leader.



After writing a lengthy 35th diaversary blog and falling asleep, here’s EXACTLY what I didn’t want to happen:

In a hotel room, all alone and the Dexcom starts wailing that I’m below 55. WTF? Grabbing Glucolift tabs and meter. Tabs in mouth, BG reads 121 on meter. WHEW! And before I can enter a new value in the Dexcom, the bg turns to the dreaded question marks.


Dex site is only a few days old. This isn’t supposed to happen and shit, I didn’t bring a back-up. 15 minutes later it’s still ???. Bg is dropping but not drastically. Fall back asleep and the hotel clock radio alarm goes off and scares me silly. It’s midnight. It’s my diaversary.

The music is loud. It’s playing Oasis. The words in the song are blaring,

“I walk alone, I walk alone”.

Heart pounding, check Dex. ???? Fuck. Back asleep. Hotel alarm blaring at 12:15. What the heck? All lights on. Alarm finally off. Dexcom reality sinks in. Clean off transmitter and restart receiver in an act of desperation.

Have been awake for almost 22 hours straight. Exhausted. It all comes crashing down. 35 years and I am scared out of my mind of diabetes. This disease. This disease and all the worry. The endless worry. Of course I can survive a few days if need be on a business trip without a functioning Dexcom but 35 years of this. 35 years should be a proud moment but if I’m honest at 12:30 am alone in a hotel room, all of these years feel like the heaviest weight of grief and heartache on my chest. What is next for me?

I am scared. I am scared. I am scared. I am scared. I may be a fighter but for right now, I am scared


I snapped this pic yesterday while on the fly. I switched sites in the morning while packing-up some boxes and had about 30 seconds to myself. I left the old site in… Just in case.  Hours later the old site started to bug me (also note, my skinny jeans were feeling snug, I was moving around a lot and the old site was simply annoyed). I pulled it out and immediately saw the blood. Oops. And after putting a tissue in the waist of my pants, checked the cannula.


Hello there vampire!

vampireJPG copy

I snapped a pic. I thought the pic looked kinda of cool (interesting angle, decent light).

Vampires really do exist!


But I Forgot

Maybe it’s just me… But there are times when at the end of the day, a carpet (carpet means crappy apparently in iPhone speak) day, that you decide to treat yourself. And again, maybe it’s just me but the fitbit wasn’t charged, and realizing talking to the therapist really doesn’t make a damn thing better and you’ve been hungry for hours and just want to eat. And as you wait for your food, you realize you are going low BUT if you treat you will ruin the meal and you aren’t QUITE low yet… But it’s on the horizon and timing may be tight. So the food arrives and you devour the carbs first and savor the veggies and proteins second. And that memory thing happens. You don’t need to bolus right away, you are low and going lower and then suddenly the carbs are gone from your memory. And you end up talking to the hostess about a zillion things and that bolus… Well what bolus? And then more carbs arrive. They are a ‘gift’. And then a friend who happens to be in the neighborhood stops by and you forget to bolus again for the food you ordered and the food you didn’t (but got anyway). An hour of catching up flies by and it’s time to go home and the thirst is intense and you don’t feel quite right and you start to hunt for the Dexcom in your skirt pocket and remember you put it in your purse because your skirt pockets were too shallow. And the dread kicks in. How could it not? The tiny bit of nausea kicks in too. It’s not awful but it’s there. And after the moment of ‘WHERE IS MY DEX?” there is the moment of “this number isn’t going to be good”. As you look at the Dex screen and with the other hand scroll through to see how much bolusing you missed, it hits you. You completely and utterly fucked up. You made that horrendous mistake of forgetting. You just somehow, magically forgot that this busted pancreas is STILL busted. Almost 35 years and yes, still busted. And your external pancreas that has been pulling down your skirt all damn day with every step and keeping your outfit lopsided, you somehow forgot about. And as shirtty as you may feel and believe me, it is not a good feeling and the whole day was just one big cluster fudge… There’s just a little part of you. Not a part you ever even want to really know, but a part of you that’s a teeny bit proud because you realize that you actually totally and complete forgot that you were ever diabetic. You forgot about it all. And it may all be flooding back now and you may be up way too late dealing with corrections and you may be stressed about what this forgetting is doing to your body BUT, at some point tonight, the rest of your life was bigger and you just forgot. And as much as it feels terrible. It’s a relief to know you can forget. And then you hug your toothless dog, and think of the damage to your body and you have to drink water and wait and be disappointed in yourself, but really, you just forgot.