The Punk is Back!

Picked up My Princess yesterday. An extremely long drive, crunched into the backseat of My Dad’s Honda Civic, wishing my child-bearing hips were just a little narrower so The Peach’s ginourmous car seat wouldn’t leave a semi-permanent furrow in my thigh. Does an 18-month old really need two cupholders? Really?

I’m less angry now. Still a little irritated and I find myself unconsciously withdrawing a bit from My Mom when I talk to her. But less angry. Because my girl? She had a good time. She made friends and played and ran and swam and apparently drew all over everything and everybody. Which was welcomed, I gather. I was told what a great artist she was and how she took care of the other girls in her cabin and how they were all so happy to have her and how much they hoped she’d come back.

And she learned some stuff too. As I have mentioned before, Princess Punk has an insulin pump. The way it works… Okay… I’m going to explain it the best and non-boringest way I can and I’ll use some pictures, because it’s kinda hard to explain what The Princess actually has to do 24 hours a day, 7 days a week, 365 days a year, untill they find a cure…

The pump-

insulin%20pump%203(3)The pump is a pager-sized (remember pagers? If not, you’re too damn young) electronic device that we program with insulin-to-carb ratios for boluses when she eats and then basal rates for continuous delivery 24/7. The goal is to keep her blood glucose (Bg) between 70 and 120. Princess Punk currently has 4 different carb ratios, since her body uses insulin differently throughout the day. For example, her ratio from 6am to 10:30am is 1 unit of insulin for every 6.8 grams of carbohydrates. So, say she has a bagel at 7am, she inputs 70g of carbs (seriously. One bagel is 70 grams) into her pump and the pump delivers 10.3u of insulin over the course of about 2 minutes. The pump also delivers a basal rate (which again, varies throughout the day) and delivers anywhere from 1.2 to 1.6 units of insulin per hour for a total of 37.25u in a 24 hour period.

Confused yet? It gets worse…

The meter- cohdradiabetes100_1853

The meter is the thing that reads her blood glucose level. Bg breaks down to the number of milligrams of glucose (sugar) per deciliter of blood. Measured of course, in a teeny tiny drop. Princess Punk takes out her meter, inserts a test strip, pricks her finger to draw a drop of blood and touches the blood to the test strip which sucks it in and analyzes it. It takes about 10 seconds from the time she puts the strip into the meter. l366955880The meter then sends a signal to the pump telling it what her Bg is. If she’s not using one of her linked meters (she has three, one in her kit, a spare at home and a spare at school), she has to input the number manually. If the pump gets a number from the meter that is over that 120 threshold, it beeps at The Princess and says, “Hey asshole!, punch some buttons here so you don’t get sick!” Ok… it really just beeps. If she actually presses the button like she’s supposed to, it calculates how much insulin to bolus to bring it back down. That’d be a correction.  Her correction calculation is… ready? 1g of insulin for every 20mg/ml her Bg is over 120.

Thank god for the pump. Seriously. The first year or so after she was diagnosed, she used insulin pens. She had 1 shot of a long-acting insulin every night that lasted 24h. That’d be her basal on the pump. When she bolused for meals and corrections, she used a fast acting insulin in a pen. We had to calculate her bolus by hand which meant remembering her different carb ratios and correction calculations. She’d dial the pen to the correct number of units and give herself a shot (usually in the belly or arm). video-flexpenI kept a calculator in my purse. Not a fun thing for a 10-year old in a restaurant. She’d usually insist on going to the bathroom which always skeeved me out. I don’t know why, public restrooms are perfectly sterile places to give a kid a subcutaneous injection.  Yuck. Not to mention, more than a few times, someone walked in to the bathroom, just in time to watch my pre-teen shooting up in the presence of an adult. Awkward. It was generally about 4 boluses a day plus the long-acting shot at bedtime. Which stung. Bleeding and bruises were not uncommon. She still has some faint dots on her stomach as residual reminders that hey, it could be worse…

So anyway… The pump. Much easier than shots.

The infusion set-

The infusion set is what connects the pump to The Princess. It consists of a reservoir, where the insulin goes, a long flexible tube, and a port with a cannula. 300px-Insulin_pump_and_infusion_set

Changing the infusion set…

  1. With an extremely bored expression on her face, Princess Punk suspends her pump. She presses a button which rewinds the little plunger that had slowly pushed the insulin into her body.
  2. She unsticks the port (it’s secured by a little sticker thingy) and pulls out the cannula.
  3. She itches at the old infusion site and looks irritated for a moment.
  4. She then attaches this little blue thing with an extremely scary looking needle to the reservoir and draws insulin out of the vial.300px-Insulin_pump_reservoir
  5. She unscrews the plunger off the reservoir and snicks off the blue thing with the scary needle.
  6. She does something random with the blue thing with the scary needle. It’s supposed to go into a sharps container, but we find them randomly scattered throughout the house. Thank god The Peach hasn’t grabbed one yet (although I did pull a used test strip out of her mouth once. Gag.)
  7. She attaches the tubing to the reservoir and sticks the reservoir in the pump.
  8. She continues to look extremely bored.
  9. She presses a button on the pump to prime the tubing, watching the port until a drip of insulin comes out of the cannula. She is supposed to then check the tubing for air pockets.
  10. She doesn’t check the tubing for air pockets.
  11. She sticks the port into the spring-loaded insertion device. We refer to this particular piece of medical equipment as “The Blue Mushroom.”
  12. Bored expression turns into slight frown. “Charging” The Mushroom is sketchy. At this point, the cannula has a half-inch needle protruding from it. She has to peel the paper of the sticky part of the port and pull the knob on The Mushroom. The port needs to be secure on The Mushroom or it won’t insert correctly and she’ll have to pull it out and go back to step… ummm… Step 7. Getting the port secure, while avoiding the sticky and the needle is… Tricky. Much cursing has occurred at this step.300px-Infusion_set_4
  13. Once The Mushroom is securely loaded up, The Princess then sets it against her skin, preferably in an area where there is a slight cushion of fat. Insulin is a chubby-chaser and likes fatty areas.
  14. She tenses visibly, for just a second.
  15. She presses the button on The Mushroom which shoots the half-inch needle and surrounding cannula into her flesh.
  16. She pulls away The Mushroom which leaves behind a blue plastic thing stinging out of the port.
  17. If she doesn’t have The Mushroom (“Ummm.. I think it’s at Mima’s?”), she hands the port to me an proffers her upper arm so I can stab the thing in. At which point she glares in my general direction and says, “Ow Mom.” 
  18. She tenses again.300px-Infusion_set_1
  19. She pulls out the blue plastic thing and in doing so, removes the half-inch needle, leaving just the cannula attached to the tubing.
  20. She looks bored again.
  21. She presses a button on her pump again, this time priming the cannula so the insulin is ready to go.

This whole process takes less than a minute. IMAG1711

Ideally, she is supposed to do a set change every other day. She is supposed to rotate sites so she doesn’t develop scar tissue or get insulin build up. Since insulin is such a chubby-chaser, if one spot is used too much, it just kinda hangs out, whistling at the fat molecules in the area like it was in some cushy pick-up bar, and doesn’t actually get into her blood stream where it should be.

What she does is use the same 4″ square on each upper arm and change her site when the pump runs out of insulin.

Anyways, this entire, painfully long explanation was to say,

When we picked up The Princess, her port was on her hip. And the whole cabin did set changes together, every night. And they used not only a different site, but a different body part each time. Ok… That sounded kinda creepy. What  I meant was, they cycled through all the potential infusion sites, stomach, arms, hips, ass (the top of it, not the part you sit on), sides and thighs.

Just that? That one thing? That made the whole thing an amazing and wonderful success.

Thank you Clara Barton Center for Diabetes Education.

Thank you Campership fund.

Thank you anonymous donor.

Thank you R&B who helped us with that last little bit.

And thank you Princess Punk, for being the amazing young woman you are and not letting The D-Monster fuck up your shit.YouRockHand-300x300


My last camp letter to The Princess

So I totally spaced last night and didn’t write to you, so I’m writing this morning and I hope you get it since it’s before 9. I’m at home this morning, I’m going to go into work later when Daddy gets home.

So there are bats there hunh? Creepy… But still kinda cool. Plus, if the bats weren’t there, the bugs would be 100 times worse. Did you know just ONE bat eats between 2000 and 6000 bugs a night?? True story. 🙂

Please please please try to have fun, Mima and Biba and The Peach and I are coming to pick you up tomorrow. And we’re leaving at 5:30 in the morning to get there on time, so you better have some awesome stories to tell us on the way home. Mima wants to hear about how much fun you had, so if you haven’t had any fun yet, you better have some today so you have something to tell her!!!

Anyhoo… I have to change your sister because she STINKS and then I have to feed us both cuz I’m staaaaaaaaaavin.

So you can have this tuck in tonight…

Are you all tucked in and roasty-toasty?

Blow me a kiss goodnight

Close your eyes till morning comes

Happy dreams and sleep tight


Guess what???

Chicken butt!!!!!!!

Guess what else?

I love you forever

I like you for always

As long as I’m living

My baby you’ll be

ILY! Mom


My sweet Princess. I got another letter today. She was not happy.

And I know, that the reason she is not letting herself have a good time is because of what My Mom did. She’s worried and moody and I AM SO FUCKING ANGRY.

Because we planned this for months. We struggled and planned and begged and pleaded for financial assistance. We did everything we could to make this happen. And she needed this. My Princess needed to be able to have a good time, with other kids like her. Who are dealing with The D-Monster just like her. She needed to relax, and have fun, and not be so fucking different from everyone else.

And instead? Instead, she left home crying and worrying. And is still worried. And most of her letters seem to indicate that she is not having a good time and just wants to come home and she’s still worried.

And I’m heartbroken. Because this amazing, caring child has taken on the burden of putting her own happiness underneath the happiness of someone who just doesn’t want to be happy. And God Damn It, she doesn’t deserve that.

I get it. I’ve had my own share of meltdowns that Princess Punk has been witness to, my own fuck ups that left my kid picking up the pieces of her shattered mom. And I really hate that.

But this? The timing of this?

I cannot even express how angry and frustrated and fucking heartbroken I am for my child.

I’m going to go tickle The Peach now so maybe I can dry up these hot, angry tears and smile.

That’s my girl…

Got a phone call the other night from an area code I didn’t recognize.

“Mrs. Newlife?


“This is the doctor from the Clara Barton camp? With Princess Punk?”

(as my pulse quickens and I start to hyperventilate just a teeny bit…) “Yes?

“I have Princess Punk here in my office (Oh. Shit.) and I’m just calling to tell you that Princess Punk had a fall e and hurt her wrist. I examined it and it looks like a sprain. So we gave her some ibuprofen and put some ice on it.”

I actually laughed.

“Ummm? I just thought I should call you and let you know?”

(giggling) “Oh, sure, no problem. She does that.”


“No. I mean… I mean she’s kinda rough and tumble and she gets hurt pretty often.”

“Um? Okay?”

“No… I mean, as long as nothing’s broken, she’ll be fine. I’m sure she’s okay.”

“Okay, well, I just wanted to call and let you know.”

“Okay, thanks!”

~awkward silence~

“Ok, well I guess I’ll let you go?”

“Ok, I’m glad it wasn’t anything serious. I heard ‘doctor from camp’ and I got worried. But it’s just a sprain. She’s sort of… Klutzy.”


“Alright, well thank you for calling!” (awkwardly forced cheerfulness as I try not to sound like a callous asshole) “I’m glad she’s OK!”

“Have a good night!”

“Um… Okay?”

Not really sure if laughing is the appropriate response to someone telling you your kid just got injured…


Another response to The Princess

Hey Bug!


Only one freaking picture of you and you can’t even see your face. What the heck were you doing in that plate of food anyway??

Ok… So I got 2 letters today. One saying you had a great time at the dance and you made some friends and it was hot. And then another one saying you wanted to be home and you miss us and you hope I hadn’t killed your cat yet (I haven’t BTW) and it was hot…

Soooo… Which letter came first? Cuz I’m really hoping you are making friends and having a good time. I miss you too, and so does everybody else but we want you to have fun there. PLEASE don’t worry about Mima, she’s okay. She went out to dinner with us last Friday when our power went out and she had a good time. So DO NOT worry about her and try to have fun.

So, I’m sorry the bugs are awful, but the heat? It was even hotter here. Got into the 90’s last week and SUPER humid. I think I burned my a$$ on the seat in the car. Even with the air conditioning on in the bedroom it was miserable. At least you could go swimming!

And you smell bad even AFTER you take a shower, so BURN.

AND your spelling FAILS. But we love you anyway.

Are you all tucked in and roasty-toasty?

Blow me a kiss goodnight

Close your eyes till morning comes

Happy dreams and sleep tight


I love you forever


Ummm… 2 letters?

Ok. I got both of these today. And they were both postmarked 7/19.

First I opened this one.


And then this one.


So… Which one did she write first?

Breaking Ba…. HOLY CRAP

Season 3 Episode 12.

That was fucking insane.

As a Netflix viewer, and someone who watches chicks of TV seasons at a time, I don’t do spoilers, so if you’ve got Breaking Bad in your instant queue or sitting on your hard drive or in a DVD box set your spouse bought you for Christmas/Hanukkah/ Kwanzaa/ Yule/ (insert other gift-giving holiday here), be not afraid, I don’t intend to give away any secrets or reveal any plot twists (although there have been a few). Wow. That was a really long sentence. Anyway… The Zen Master and I have been catching up this weekend, what with The Princess being gone and The Peach occupied with The Zen Master’s dirty socks and my empty Red Bull carton.

This show is extremely well written. And slightly frightening. As I think I’ve said before, it can be a bit difficult for me to actually pay attention to a TV show for long enough to actually sit through a whole hour, let alone an entire season. This show happens to be one of the few that is engaging enough to keep my attention. As much as anything can I guess. I still mess around on my phone, but I definitely spend more time paying attention to the TV than my phone.

Interesting fact… The creator of this show, Vince Gilligan, used to be a writer on the X-files. Which happened to be a show that I was involved with enough to actually go to a convention. Yes, I am a dork.

So anyway, this somewhat random, very rambly post was just to say, this show is great. And you should watch it.

Assuming you like dark humor and you’re okay with watching violence and drugs and gross nasty hookers. On TV… Watching that stuff on TV.

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