My “Where the eff have I been?” post, Part I – The D-Monster

Where have I been you ask?

Right here. All along. Just… Not HERE.

This summer has been… Challenging.

We spent much of the summer trying to get The D-Monster under control. We’ve still got a ways to go, but I am so proud of her. She is truly being compliant and working hard at maintaining a healthy blood sugar. The D-Monster however, is a bastard and Princess Punk is now experiencing lows on a daily basis. She was 38 during practice last week. TWICE. Like she tested and she was 38 and she had her 15 grams of carbohydrates and waited 15 minutes and tested again and she was STILL 38. At 38, she can barely walk, yet her coach still had to take her off the field because she kept playing. She’s proud about making Varsity and even more excited about starting, but she is continuing to try to impress her coach so he keeps playing her and as a result she plays through the nausea and shakiness that comes with the lows. So now I get to worry about her passing out or having a seizure or something because her sugar gets too low and she’s too hard-headed to stop playing. Fortunately, her coach is on the ball and noticed she wasn’t doing too well (she got pale and uncoordinated) but it took her another 15 minutes to get into the 80’s. She was okay by the time she got home. But then she had another low overnight. 54 this time and she couldn’t even get out of bed. Like, literally, unable to physically get up out of bed.

But… At least now that she is compliant with testing and covering her food, we have a better idea how much insulin she needs and when. Here is a kind of breakdown of what she has to deal with on any given day. I’ll start off simple.

  • Bg-Blood glucose. This is the number that reflects the number of milligrams per deciliter of sugar that is in her blood stream (and not getting into her cells where it’s needed). Our goal is anywhere from 70-120
  • Test– A Bg check. Princess Punk pricks her finger with a lancet and squeezes a tiny drop of blood onto a tiny little strip inserted into her meter. The meter will show a Bg reading within about 3 seconds. It also sends the reading to the pump via RF or something.
  • A1C– Hemoglobin A1C. A blood test that correlates to an approximately 3 month average of blood sugars. Non-diabetics are under 6. American Diabetes Association considers 7.5 fairly good control for a Type 1 Diabetic. Currently the Princess is hovering around 9.3.
  • Low– Bg below 70. Princess Punk has to stop whatever it is she is doing and have 15g of fast acting carbs. Juice or sugar tabs are preferable. Then she has to wait 15 minutes and test again. If she’s still below 70, she has to do it again (15g of carbs and 15 minutes to re-check)
  • High– Bg above 120. add insulin. See correction below.
  • Basal– A constant flow of fast-acting insulin
  • Bolus– An extra “boost” boost of insulin to administer when consuming carbs or when a Bg reads over the target range
  • The Pump– A nifty device that gives The Princess her basal and calculates and delivers boluses as well.
  • Infusion set– a little piece of plastic that is attached to a cannula that goes into Princess Punk’s skin (site). Usually an arm or leg. She doesn’t like using her stomach or butt. The little piece of plastic is attached to a (removable) piece of tubing that is attached to an insulin reservoir in her pump. That way she can remove the pump and tubing (showers, sports and swimming) without having to pull the site out of her flesh and redo it later. She’s supposed to change her site every other day. Not so much.
  • Ratio– the number of grams of carbs for each unit of insulin she takes. Because The D-Monster is an asshole, the amount of insulin she needs throughout the day varies. For example, her ratio first thing in the morning is around 5. Meaning that for every 5 grams of carbs she eats, she takes a unit of insulin. Her ratio at dinnertime is 6. We also have to make adjustments when she has her period and when she is playing soccer (or basketball in another month or so).
  • Correction– Complicated. a correction is what she needs when her blood sugar is too high. If she tests and gets a high, she will bolus 1 unit of insulin for every 12 mg/dl her Bg is over 120. Example… Princess Punk tests her sugar and gets a 220. That is 100 mg/dl of sugar in her blood that shouldn’t be there. So we take the 100 and divide by 12 and get… Crap. Math. Umm… 8.3333333333333. So she will do a bolus on her pump with 8.3 units of insulin in the hopes that her Bg will come down. Thank God for the pump. When she was on shots, we had to carry around a calculator to figure out how much insulin to give her. Not so fun when sitting in a restaurant in a tight booth trying to figure out how much to bolus for a heap of French fries and a strawberry lemonade combined with a Bg of 223, not to mention rounding it to the nearest half-unit. The pump can deliver in increments as small as 1/10 of a unit whereas shots go to a half unit and only if you have the right kind of delivery device (refillable pen vs. disposable pen vs. syringes). Oh and the needles present a problem too. Nothing like carrying a sharps container in your purse. Now she just presses a couple of buttons and she’s all set to eat.
  • Lantus– long-acting insulin. Normally if you have a pump, you just use your basal instead of the Lantus pen (kind of like an Epi-Pen but reusable). Princess Punk has to take off her pump (remove the tubing from the site) for several hours a day during sports. She can’t play or shower or swim with the pump on. Since she’s not getting her basal during that time period, her Bg was going through the roof during practices and games and whenever she went in the pool. To avoid this, we lowered her basal from the pump to a very small amount (basically just enough to keep the tubing from getting clogged) and then she takes a shot of Lantus before bed so her baseline is covered for a full 24 hours, regardless of whether she is wearing the pump or not. She still has to bolus on the pump for highs and for carbs.

Confused yet? Try this…

The other night, Princess Punk went to practice and came home around 5. Her site had gotten ripped out during a scrimmage so she had been unable to re-attach her pump and had to put in a new infusion set. She tested and was high at dinner so she did a correction along with the bolus for her meal. We must have miscalculated the carbs or the ratio because her Bg was 45. She looked a little gray and her hands were shaking. She had some juice, but 15 minutes later she was still low. She had some more juice and was finally in the 90’s. Then she took her Lantus at bedtime. Since we figured we had miscalculated at dinnertime, we dropped her Lantus down a few units so she wouldn’t have another low overnight. Of course, the next day she got her period and spent the whole day high with Bg averaging around 230. We gave her a temporary basal of 130% of normal to counteract the highs.

This is an example of why her A1C is still messed up even though now she’s compliant.

Got it?

Nah, we still don’t either.

 

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Wow… Too Long…

So yes, it’s been a ridiculously long time. Like, ri-DONK-u-lous as my supervisor is apt to say.

And I am composing a “Where the eff have I been” post currently, but today, I first want to say…

HAPPY BIRTHDAY PRINCESS PUNK!

16 years ago today I became a mom for the first time. I was 20. I was clueless. I was terrified. And here I was with this tiny little angry potato (seriously, that’s what she looked like… newborn babies are not generally cute) that I didn’t know what to do with and yet loved with every ounce of my being. She was red. And angry. And just as clueless as I was.

Princess Punk has had a lot of obstacles in her life. I never should have gotten pregnant in the first place. Wait… That came out weird. What I meant… I’ve had poly-cystic ovarian syndrome (PCOS) since puberty. I got my period 4 times a year, if that. It’s why we went through fertility treatments to get The Peach. So for me to have an “oops” pregnancy at 19 was actually kind of a miracle. When The Zen Master and I went in for our consultation for the fertility study, the nurse who interviewed us was genuinely surprised that I already had a child. She said that the chances of me conceiving without help would have been ridiculously low. But she got here.

Then, she ended up in the hospital on day 5 with severe dehydration, failure to thrive and an enlarged heart because I listened to the Nazi lactation nurse and refused to give her a bottle. What neither of us knew is that, due to wicked hormonal imbalances (i.e. PCOS), my milk would never come in, despite every effort to the contrary. So my little Princess nearly starved to death (quite literally) before she’d ever really had a chance at life. She rebounded quickly on formula and I got to wear this ridiculous contraption taped to my chest so she could still nurse while actually getting formula. But she made it.

I was unmedicated, undermedicated or poorly medicated throughout the first 5 years of Princess Punk’s life. As a result I had 2 suicide attempts and ended up hospitalized 3 times. Princess Punk was placed in my parents’ custody for some time and we shared custody for several years. When they moved here to VT, I stayed in FL to finish college and she came here to live with them. The Sperm Donor rarely saw her and when he did, he denied she was his and was downright mean to her. I recall once, when she was an infant, sitting in her car seat, he put his face about 6″ away from hers and yelled, just to make her cry. Asshole. And I myself was not a great mother to her in the beginning. I’d drop her off with various people and go out and smoke pot and drink with “my boys” while I left her at her paternal grandmother’s house (Sperm Donor’s mom) or some other really inappropriate place. Or just leave her with my parents while I did my own thing.  She has had to deal with a lot of issues surrounding those formative years where I was kinda just a sucky mom. But she did it.

And then The D-Monster reared it’s massively ugly head. And since then she’s struggled with ignorance and illness and high blood sugar and low blood sugar and medical releases and being turned away from the local summer camp because “they didn’t have the capacity to care for a child with uncontrolled diabetes.” That one still pisses me off. She’s 100 times better with compliance since her surgery got canceled and she decided she finally is ready to stop letting the D-Monster control her life. She still struggles. But she gets it.

Princess Punk blew my mind from day one. She continues to do so every day, in both good ways and bad. She has grown to become an amazing young woman. She is intelligent, kind, talented, beautiful, strong and brave. Even a diagnosis of Type 1 Diabetes has not stopped her from doing well in school, playing on Varsity Soccer (yes, starting on varsity as a sophomore), being a caring friend, a loving big sister and an amazing daughter and granddaughter. She is a force of nature, unwavering and unstoppable in her achieving her dreams. I am SO proud of you babygirl, Happy Birthday!

Oh, and BTW Princess Punk…

I Love you Forever,

I Like you For Always,

Even When You’re All Grown Up,

My Baby You’ll Be.

blog1

Stop trying to ruin everything Diabetes. You Suck.

Happy 15th birthday Princess Punk!

I’m really REALLY sorry that The D-Monster tried to screw up your birthday.

Let me elaborate.

In Vermont, you can gt a learner’s permit at age 15. I think this is actually the case in most states, but I thought I’d just clarify. Here, all she needs to do is take a (very) easy test and provide some identification that she is a citizen of the US and a resident in VT. And you know, she’s never been arrested for drugs or had a CDL licence. Really?

Anyway. The Princess was SO excited about getting her permit and she’d taken the practice test over the weekend about 500 times. We had the ID info she needed, minus her SS card which they said we could bring in later and they’d just give her a non-ID ID. Whatever. She could still practice driving with it. I was initially going to take her next week or the week after when she wasn’t at soccer practice, but I thought, “you know what? you only turn 15 once and getting a permit is a major milestone in life.” So I excused her from soccer practice and even picked her up from school a little bit early in order to make the 3pm appointment in Montpelier to take her test.

But then The D-Monster decided to fuck up all our plans.

We got to the DMV and filled out everything and checked the appropriate boxes on the forms and gave the nice lady all the relevant paperwork.

“She has diabetes?” We had checked off a box on the form.

“Yes.”

“Okay. Well, we’ll need her doctor to fill out the front and back of this form. Then you have to mail it to our department where they make a decision on medical clearance. Then we’ll send a letter back to you. When you bring me that letter, then she can take the test.”

“Wait. You mean she can’t even take the test without a note from her doctor.” I did not form this as a question since it had just seemed so… wrong.

“Yes, I’m very sorry. But we’re really not even allowed to let them take the test without the clearance.” At least she was nice about it.

I am fighting back tears now as I clarify exactly what is needed for my kid to do what all of her other friends are able to do without a second thought.

It’s not fair. She’s just a kid. She’s 15 and she doesn’t need one more reminder how much this disease totally sucks.

It was hard for me not to cry. I did cry actually, a little bit, in the bathroom where Princess Punk couldn’t see me. She was, of course, stoic as always. I’m sure this will erupt in some point at a moment of anger or frustration and it will all come spilling out in some kind of emotional, weepy, tidal wave.

At least she got her Chili and cannolis for her birthday dinner. And a Doctor Who cup and iPod case. And a new computer which is not playing her games right now, but at least we’re working on it.

So take that D-Monster, she had a good day anyway. You just pissed me off. Again.

Spreading the joy…

I love watching my girls together…

"You Dance wif me!!!"

“You Dance wif me!!!”

"I Fwyin! I Fwyin!!! EEEEEEE!!!"

“I Fwyin! I Fwyin!!! EEEEEEE!!!”

Even Fairy Dog and The Beast are feeling the love.wpid-20140907_055220.jpg

Mommy crack again


This one actually works!

Posted from my phone because I’m too lazy to get my laptop.

Couldn’t help myself

Both of my children are fucking crazy.
Had to share.

Posted from my phone because I’m too lazy to get my laptop.

Video

An email from The Princess…

From: Princess Punk [mailto: PrincessPunk@emailISP.com]

Sent: Friday, April 25, 2014 1:01 PM

To:NewLife; work

Subject: can you?

 can you get me these there really good i would eat them instead of candy and they are pretty healthy 🙂PP1food

 

 

 

On Friday, April 25, 2014, NewLife<New.Life@workemail.com> wrote:

Can you send me a grammatically correct email?

 

 

 

From: Princess Punk [mailto: PrincessPunk@emailISP.com]

Sent: Friday, April 25, 2014 1:01 PM

To:NewLife; work

Subject: Could you buy these for me?

Can you please buy these bars at the store on your way home. They are really good and I would eat them instead of candy. I would like it if you got them for me. 

 

 

I can’t tell if she’s being snarky or just following directions.

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