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.

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

And an update, a Dexcom sensor is arriving at my hotel this morning.

Back to being brave now.

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

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.

It’s a little weird for me to NOT have participated in Diabetes Blog Week this past week.  I started Surfacefine 2 years ago to participate in what I think remains a TREMENDOUS idea by Karen over at Bittersweet Diabetes  …… And this year, I’ve completely missed it.

At some point I hope to catch-up on all the amazing blogs and posts.  I only read one post the entire week.  Yep, just one.  The one I read was from Kim over at Texting My Pancreas.  First let me explain, I don’t have any clue how things work in life.  Fate?  I question it.  Luck?  Perhaps.  Karma?  Don’t even get me started.  So I happened to see Kim’s post on my phone and actually had a few minutes to read it.  She nails it.  Although this was so very true for me as a diabetic it applies to so many other things, many other struggles.  Here you go kiddos: What Brings Me Down I was meant to read that… I’m sure of it.

I attended JDRF NYC Chapter’s Annual Research Update last night.  I’m not gonna lie, a lot of it was over my head but it was encouraging to see so many people in attendance.  I arrived late for the reception but was thrilled to have maybe 5 minutes of rushed conversation with some DOC friends I haven’t seen for awhile.  The nicest part though was when, after the 2nd presentation, my brother took a seat next to me.  I’m fairly certain he was lost during the presentation too but he was there and that’s what mattered.  My brother and I managed to squeeze in dinner afterward.  I can’t remember the last time we had one-on-one time but it was good to reconnect.  Although we were rushing a bit through our meal, my brother still missed his train.  Getting to the train was a hike from where we were.  His train ride is far from short, but we had some together time and it was nice to feel like I had some support.  We were together because of diabetes.  As much as I hate to admit it (and my teeth are gritted as I type this), I have to thank diabetes for giving me some time to see DOC friends and to have a dinner date with my Bro.  I guess I will have to hold back my Duck Fiabetes for the day.

On Wednesday I met up with a friend for lunch and she suddenly exclaimed, “Your eye is BLEEDING!!!!”.  Of course I thought blood was coming out of my eye but nope.  It looked like this:

Great.  Probably a broken blood vessel but that inner voice that says, “Hey you… you’ve had a slew of pump site problems and some overnight WAY highs that you’ve been sleeping through… A LOT…. now look what happened” was whispering in my ear.  I called and got myself squeezed into an early morning appointment the next day with my retina specialist (he may actually be God).  The next morning (yesterday) it looked even sexier:

So I saw one of my very favorite doctors, joked about wearing bright red lipstick and a red dress to play up my eye as an “accessory” and WHEW-OH-WHEW got the diabetes all-clear.  WHEW again! I also got the this-will-take-two-weeks-to-heal-news.  Ugh.

As I left the doctor’s office I noticed something a bit clearer than when I’d entered.  Sculptures on Park Avenue.  Alice Aycock’s Park Avenue Paper Chase.  Oh how astonishingly lovely and inspirational.  So there you have it.  The reason I have a retina specialist is because of diabetes.  If my eye didn’t look like a Halloween horror show, I wouldn’t have been at the doctor’s office until August.  Now, I probably would have seen some of these sculptures on other parts of Park Avenue, but definitely not right out of the entryway of my fantastic doctor.  Dammit.  Thanks Diabetes.  grrrrrr.

And finally, an update on how eliminating curse words from my vocabulary ($.25 a F-Bomb adds up) is progressing.  Yesterday and today did no favors to my savings, but at least it benefits JDRF.  I would also like to point out something to the right of the jar.  I didn’t notice it until i uploaded the pic.  Know what that is?  Ah serenity now!