World Diabetes Day. A Poem.

(I totally stole this idea from Kerri.  Her poem's awesome.)

Have you drunk enough water?
Have you had enough food?
These are questions I'm asking,
Though I'm not in the mood.

No, I'm not in the mood
to count carbs like crazy.
But I know when I don't,
Everything will get hazy.

When the numbers are wacky,
I don't seem to know why.
I've done nothing different,
So why am I high?

Exercise is a must,
Though I know when I do it,
A low is a-comin,
I'll just have to get through it.

Leaving the house
Is a whole new ordeal.
Do I have all the supplies,
That I'll need to stay real?

Do I have all the needles,
the insulin too?
The pump set infusion,
And glucagon new?

The doctors they tell me
That everything's fine,
But come back tomorrow,
Because it's a fine line.

Machines are all running,
They pump and they check.
They keep things all humming,
So I'm not a wreck.

The cure, it'll be here.
It's due any day.
That's what they tell me,
Yes, that's what they say.

In the meantime, I wonder
If I can have milk.
I ask the same questions
As those of my ilk.

It's a cruel game we're playing,
This sugar roulette,
With the pancreas taunting -
"You get what you get".

They just keep on pounding,
These drums in my head.
It's while I'm awake,
And while I'm in bed.

So here's to the people.
The people who pray,
The people who celebrate,
World Diabetes Day.

Me And "The Green Smoothie Girl"

Ok, first of all, you might get offended at this post.  If so, I'm sorry, and I hope we can still be friends.

Also, as it turns out, there are a lot of CAPS in this post.  Sorry, and yes, I'm yelling.

So, here goes:

The one "cure" I get the most is green smoothies.  Hands down.  I hear this a lot.  "Go on a juice fast.  Green juice only.  It solves everything."  "No, not juice. Smoothies.  Green smoothies."  "Green this....green that.."

I know processed food is bad.  I've read quite a bit about it.  I'm against food colorings, hydrogenated oils, all that terrible stuff. (Flavor blasted goldfish are not good for you.  That's all I'm saying).

They send me to different websites about various spas and such, and "The Green Smoothie Girl" comes up a lot.  Hey, I'm into whatever will help, and greens?  Who says those are bad?  Anybody? So I go to her website.

Immediately the first thing I see is a video where she chats with a "Dr." who cured himself of Type 1 eating raw.  This used to be on her main page, now you have to dig through her site to find it.

Go.  Check it out.  (It will piss you off if you are diabetic, but go anyway).  It's the second video.  The very first thing she says is how remarkably simple it is to reverse Type 2, but HERE we have a Type 1....

It's so awesome.  So miraculous. (where is the sarcasm font?)

"Prior to eating raw, my blood sugar averaged about 300, which is high..."  Um yeah.  If your blood sugar was averaging 300, you have some serious issues with control, and your medical team needs to be changed. No wonder you felt crappy.  You were not doing what the medical community was advising.

Then he eats raw food for 30 days, and voila!  He's ALL BETTER.  (Actually, he's just eating food that doesn't require insulin.  Oh, and he still needs insulin if he's sick, but STILL, he's CURED)

When I dug through her site to find the video again, I have to get angry again, as I see the first statement, in which she states "I doubt they have ever tried to heal the pancreas".

Oh, you "doubt that" do you?

Um.....THAT'S ALL THEY HAVE EVER TRIED TO DO.  IT'S WHAT THEY ARE STILL TRYING TO DO.

(Well, OK.  That comes second to keeping us alive with insulin.)

Every doctor I have ever talked to about diabetes (and yes, they have "bought into the endocrinology story") says that the research points to regeneration if the immuno attack is stopped.  They used to think it was just in honeymooning diabetics, but more and more they are realizing that many Type 1's make insulin for far longer than the initial honeymoon phase.  It probably isn't all of us, but it's more than they thought, and that is exciting, exciting, news. Healing the pancreas is PRIORITY #1.

But, no.  They've bought into the terrible medicine story, and want everybody to die a horrible, sickly death. They won't tell you that.  Only she will.

Here she is talking as if her special doctors (and only go holistic, peeps!  Only HOLISTIC) are the only ones who will tell you the secret of islet cell regeneration. Nope.  Pretty sure they're all shouting that from the rooftops.  It's just that we haven't figured out that pesky little immuno attack thing.  I took a study drug (placebo! Dammit!) that tried to regenerate those lovely islet cells. That was over 4 years ago.  Not a secret. 

There's more.  If you don't want to look, the link is a lovely little story about someone taking "no supplemental insulin" after 3 weeks of going vegan.

Except here's where the definition of "supplemental" comes in. He's still on his long acting.  He takes less of it, to be sure, but he still needs that.

(It reminded me a lot of my colonoscopy prep, actually.  I ate very very little, and took probably 10% of my basal and that was it.  What a miracle.)

All in all, it's a nice little uplifting story of  "reducing insulin usage".  Paraphrasing here - "It's so crazy!  I'm eating raw veggies and I need far less insulin?  Who knew?"

EVERYBODY KNEW.

This guy doesn't need to bolus anymore!  Just basal!  Nobody will tell you this!

PEOPLE.  YES.  IF YOU EAT NOTHING BUT VEGGIES YOUR INSULIN USAGE WILL DROP. THIS IS HOW THEY TREATED DIABETICS BEFORE INSULIN.  YOU WILL NOT NEED TO BOLUS.

If you don't do the basal, you'll eventually starve to death, but that's a quibble, really.

Actually, before insulin, they did starve diabetics, because hey, no food=no insulin necessary (they didn't know about insulin yet, but this is why the starvation diet works). They did allow small amounts of veggies and meat.  But yes, veggies basically don't require a bolus.  Well, some do, but spinach and kale and what not, not so much. Your basal should cover that just fine.  This is what those "evil conspiring doctors" do know, and they will tell you this.

It's too bad, really, that she makes these leaps.  Because so much of what she says is true.  Americans eat like crap.  We eat way too much sugar, processed foods, and drink too much soda.  We don't drink enough water and we don't eat enough veggies.  And if you do her program, you probably will experience weight loss, more energy, and clearer skin.  It probably will clear up some of your other health issues, your blood pressure will drop, your cholesterol possibly, and you'll probably feel pretty good. That's basic.  The body likes real food, and it likes green food. I'm not disputing that, and I think it's a great message.

I don't know why, however, she takes that and then makes these leaps into saying that doctors won't tell you the truth, (because they don't know it) and that diabetes can be cured.  That dietitians have all bought into the misinformation that they learned in college, and are under the thumb of the lobbyists from the meat and dairy industry.  No dietitian has ever read as much as the Green Smoothie Girl.  She's read the most.  And if you disagree with her, you just haven't read the studies she has.

I've met with a few dietitians in my lifetime.  The first thing they all say?  "Nobody gets enough vegetables.  Eat all the green vegetables you want.  Then eat some more. Drink a lot of water."  They're all agreeing with her basic message. If you ask them about juicing and smoothies?  "Go for it."   Although, since being diabetic, I have received the advice to be super careful with juice and smoothies, especially if they contain fruit.  Fruit juice is highly glycemic, and should only be used to raise lows.  Do they like processed food?  NO.  Do they like soda? NO. Do they like MSG? NO.  Big fan of hydrogenated oils?  Not so much.

So, plain green smoothies I could probably do.  Except that everybody I've ever talked to that does smoothies adds fruit.  They say it's the only way they're at all palatable. So there's that. Fun.

She also thinks she can cure cancer.  I don't know anything about cancer, and hopefully I will never have to find out.  Color me skeptical.

She does backtrack a little.  She gets a lot of hate mail when she talks about diabetes reversal and apparently never has she raised the ire of readers more than when she posted that awful video, and in that other post I linked she backpedals and says that she's never told people to go off insulin or metformin without being under the care of a competent physician.  Wait, what?  She actually admits that she's not competent to give medical advice?  That goes against everything else her website says, where she basically tells you to listen to her and not the terrible medical establishment, (unless you need to once a year, which hopefully you won't) but I was glad to see that.

Still. She and I will probably disagree on what a competent physician is, but hey.  We'll probably agree about statin meds. She "just" says the body can regenerate. That's all. Which is true.  Which we all know.

You can reduce your insulin needs by going raw!

Duh, sweetie.  But you can't ignore them.

You can cure yourself of everything with green smoothies! That medical establishment just wants your money.  (I agree, they do). Buy my books!  And my oils!  Come to my lectures!

In one breath she says she isn't on the fringe, she just wants people to eat more greens, and in the next she's reversing Type 1. I guess we disagree on what the fringe is.

No you can't cure everything with green smoothies. But you can try.  It will work for some things, but please stop taking these crazy leaps from "it's good for you" to "you don't need insulin anymore".  It's very, very dangerous.

Anyway.  This is my rant. I have never met this person. I'm sure she's done a lot of good for a lot of people. Green food is good for you.

She makes me crazy.

I hope we can still be friends.

Halloween is Over. Halle-freakin-lujah.

I don't know if you know this, but I hate Halloween.  People think it's because I'm diabetic, and that certainly doesn't help, but I've pretty much always hated it.  I simply don't get it.  At all.

It's all just so weird.

Let's terrify children.  It's hilarious.

Let's put on skanky costumes.  On our children and ourselves.  It's awesome to see normally upstanding professions like nurses and cops look super sexy. Or sexy cartoon characters.  Those are fun.

Let's go to strangers houses and ask for candy.  Repeated for hours on end.  This results in mass amounts of candy, none of which is good for anybody, much less a diabetic.

Let's deal with the mood swings, tooth decay, stomachaches, and fighting that are the neverending gifts this candy provides.

Let's celebrate death by putting hanging nooses on our houses and pretending to have dead bodies hang out of our cars.  It's SO FUN!

Isn't this hilarious?  What with the decapitation and the blood?

I hate it.  I hate it all.  But I do it, because, as Sheldon would say, it's "the social convention."  I don't do all of it, of course.  My house remains giant spider free, because, really. REALLY?  Basically, I do the bare minimum. I allow my children to dress up and go trick or treating.  I hand out candy if people come over, but our neighborhood is not one really frequented, the houses are far apart, and the driveways are long. It's not great trick-or-treating fodder.

I am what is known as a Halloween grinch, and I am OK with it. (I ADORE fall, though, and wish we didn't have to mutilate pumpkins, and we could just display them without faces and eat them).

Now, let's talk about this particular Halloween, which was actually the scariest one I've had yet.

I was out with my friends walking around in cold weather, in one of those "cool" neighborhoods where people go all out and depict suicides in the windows, because - hilarious! - watching candy overflow everywhere, and I went low.  I had eaten a cookie before we left, I had a Starburst, I still had to filch some carbs from a plastic pumpkin.  I was grumpy, and I apologize to my friends, because really, when I'm in a mood like that, I shouldn't be around people. My fuse is very short when I get like that, and giant spiderwebs just aren't helping.  Also, I like to pretend I'm normal, and that diabetes isn't affecting me 24/7.  When it's obvious like that, I don't enjoy it.

Anyway, I kept eating, walking, and trying to pretend it's not the worst day of the year, and my sugars came up and I was fine.  Came home to my teenager and her friends, who were gracious enough to come over at a last minute invite, and had a warm drink, Dex didn't like me going high, but it didn't spike that much.  I was good.

Until sometime in the night, I woke up, again feeling very very low.  The Dex must have beeped and buzzed, and that's possibly what woke me, or maybe it was the low itself.  Dex said 54, with an angled arrow downward. Here was my "thought process":

I am "low."

I should do something when I'm "low".

I can't remember what that is.

I have a pump now.  I should do something with that.  Turn it off?  I am "low".  I need to do something. What do I do when I'm "low"?

I'm pretty sure I need to do something.

Ah.  Check sugars.  That's what I do.  (BTW, this is wrong. Always treat first)

My meter said 106.  I was aware enough to know that wasn't right, I felt way too crappy for that.  I figured I had something on my hands, so I got up and rinsed my fingers and checked again.  Yes. 54.  Exactly as Dex said.

The getting up, the cold water, maybe just waking up more, SOMETHING kicked my brain into gear.

HELLO!  IT'S HALLOWEEN! YOU HAVE MORE CANDY IN THE HOUSE TONIGHT THAN YOU EVER DO!!  YOU'RE LOW!!  EAT IT NOW!!!  EAT IT ALL IF YOU HAVE TO!!!!

And I did.  And I felt better.

And then I tried not to freak out that I wasn't really aware of how to treat the low.  That my brain was that affected.  It must have been because I was so tired, plus the low.  And so I talk myself out of it, because all's well that ends well.

And then I dreamed of my family dying horrible deaths, and all I was worried about was what I was going to wear to the press conference, because for some reason, it was national news.

And then I got a migraine, courtesy of diabetes.

Good bye Halloween, hello National Diabetes Month.  Welcome.

Doctor's Visits Again

Went to the doctor.  Because, you know, I do that.  Kind of a lot.

I went to the dentist too, but I was so ticked off after I left and I didn't blog it, and the bottom line is I really need a new dentist.

He said he got a lovely little note from the CDE about me.  I took that to mean that I harass her way too much.  (He didn't say that, I just feel guilty about it). But hey.  I am a new pumper.  I am entitled to harass people until I get things set right.  RIGHT?

He was very confused looking at my numbers.  Which made me feel better, because I get very confused looking at my numbers.

"Why are some nights really high and others really low?  And here's some that are perfect.  I am not seeing a pattern here.  Your days are good, though."

Yeah, me neither.  And if we could figure out the night time thing, that would make me happy.  REALLY happy.

"You seem to go high at midnight."

Yep.

"But not always."

Yep.

"Have you noticed a trend if you eat specific things?"

Nope.

"Huh.  Here's a 261.  But the day before at the same time you were at 63."

Yep.

And round and round we go......it's very hard to set insulin levels when there's no pattern.

We've had various theories about the nighttime highs.  We used to think the Levemir was wearing off, and that's why I went high.  Now that's not a thing, because I'm not on Levemir anymore.  We used to think maybe it was the fat and protein from dinner, and an extended bolus would fix it.  It hasn't seemed to, plus midnight is about 5-6 hours after I eat.  So who knows?  Not me. Not him.

I blame goblins.

The bloodwork came back.  He called today (Saturday) while I was in the grocery store to give me my results.  Nice man.

A1C was 6.4.  Nice, and surprising, because I have had so many more highs since I started pumping, and serious ones too - up in the 300s. Kinked cannulas, poor absorption, and just basic "I don't know what I'm doing" highs.  But things have calmed down since the beginning, which really just feeds the theory that the a1c is far more heavily weighted by the more recent numbers.  Also, lots of lows.  Diabetes is always a party.

And then, the cholesterol.  The %&*! cholesterol.  Actually, he just ordered an apoB test.

"We really need to put you back on a statin."

"But the Lipitor made me insulin resistant.  I couldn't get below 200 to save my life.  And the simvastatin (Zocor) didn't work well enough for you."

He scrolled through my history.  Looking at what the simvastatin did, etc, etc.

"You know, if it weren't for the diabetes, I wouldn't treat this. You were at 110, and we want it below 100."

I am so tired of hearing that.  If it weren't for the diabetes, we could treat your test results like ANY OTHER NORMAL PERSON.

I told him that.

"I know. I know, I'm sorry.  But I really would feel better if you were on a statin."

So he prescribed 5 mg of Crestor.  I am unhappy about this.  I know someone who went on Crestor and it seriously messed with his memory.

I was so happy to be off the statins.  The thought of going back on them is depressing.  My HDL is awesome.  My triglycerides are awesome.  My VAP test comes back good every time.  All my cholesterol is "fluffy"  (pattern A).  So I have a lot of LDL. I really don't think it's going to kill me.  However, I didn't go to med school, and so I have Crestor staring me in the face.

My PCP and I have been fighting about this forever.  And my endo is normally on my side, saying without a family history of heart disease, and all the other goodness, we don't need to be overly aggressive, and yet he always seems to come back to "but we do need to treat."

I'm grumpy.

So I bought doughnuts at the store and ate them on the way home.  I had to celebrate the A1C anyway. I'm sure that's good for my cholesterol.

Could it be the infusion set?

So I texted my CDE to discuss why she thought I was suddenly having so many lows.

"How many?"

"Today?  Like 7."

"OK, I'm calling you."

We had discussed making changes to the basal rates, but not turning them down, but adding a profile for PMS which gave me approx. 20% more insulin across the board.

"Did you make the changes? It's early in the cycle for that."

"No."

"Did anything change?  Are you eating less fat?  Are you exercising more?"

I haven't exercised at all this week - my bad, and if anything, I'm eating more crappy foods, because that's what the pump lets you do!  Add a snack here and there that's totally bad for you!  I love it.

The only thing that changed is the site.  I did a site change and used a different infusion set.  I wasn't loving the Cleo, and I was going through them far too quickly, wasting them as they fell off during insertion or whatnot.  I think 90% was user error and "Pump Novicery" but it was getting old.

She decided I had probably hit a blood vessel and that was making the insulin deliver far more rapidly than a standard subcutaneous delivery.  The things I learn, I swear this disease has a never ending learning curve.  The next infusion set should probably see things even out.

Except it hasn't.  A few less lows, that's true, but they are still daily.  And annoying.  And we hates them, yes we do.  We also hates highs too, which basically boils down to: "we hates diabetes."
 (A beta cell is "my precious.")

So, my question is this, does the type of infusion set matter in the delivery of insulin?  I wouldn't think it did, but is it possible?  Or has my pancreas just turned on for a little while (I swear it does that sometimes)?  Or is it just the unknowns of diabetes?

I hate unknowns.  Maybe that's the great life lesson I was supposed to learn from this disease- that not everything can be controlled.  If so, I reject it. :)

Anyone seen changes when you changed the type of infusion set?

That Was New

So I was wandering the mall yesterday.  It was my birthday, and I needed to buy myself something.  It's mandatory.

As a side note, I'm just going to say that wandering the mall is a total assault on your olfactory senses and I do not recommend it if you have a strong sense of smell.  I don't know when every store and kiosk decided to blast scent everywhere but it is extremely annoying and headache inducing, smelling one "pleasant" scent after another.

What happened to just smelling Cinnabon everywhere you went?

Anyway, I digress.

After buying some pants for $7, which I was pretty thrilled about, I was walking around and I began to feel low. Not surprising given the lunch I had (with fabulous friends) plus all the walking immediately afterward, so I found a chair, sat down and checked.

My CGM said 82, and the meter said 75.  Not super bad, but still it merited treatment, especially since I felt the low, and I still had some insulin on board.

So I munch on some candy and start people watching.  I was in the fortunate situation that I had time to wait for my sugars to come up, and I wasn't feeling too bad.  Plus I had new pants.

Immediately this man walks up to me.

"How are you feeling?  Can I get you some orange juice?"

Blink. Blink.

"Um.  I AM having a bit of a low blood sugar, but I will be OK.Thank you."

"Yes, I can tell.  Are you sure you're ok?  You have what you need?"

This was new. I have never had a total stranger come up to me and know that:

a) I am having a low blood sugar  and
b) what to do about it.

Turns out he was a former EMT or firefighter or something. I wasn't quite clear on his job title, he was talking fast and I was having a low, but he was clearly used to dealing with PWD.  He mentioned cruise ships, so maybe he was on the emergency crew there.

I am not positive how he could "tell" I was low, but I think he just recognized the meter or the pump.  I like to think I didn't look like death warmed over. I'm optimistic that way.

"Can you drive in that condition?  Do you want me to call you a cab or a friend or something?"

"No, thank you.  I will be fine.  I just need to sit here for a few minutes and let the candy work."

"Yes, you just sit. Relax.  Feel better."

"Thank you."

And I did.

And when I  left, not only I was thrilled to smell the fresh air again, I was also reminded that there are good people in this world who look out for each other.

Not a bad birthday present, really.  Plus, cheap pants.

Tempting the Diabetes Gods

Ok, so I put up a Facebook status proclaiming that it has taken me a while, but I FINALLY feel like the pump is better than the shots.

Things had been going well, and I could see that it was helping, even to the point where I could finally say, "Yes, this is more convenient."  (I still hate the constant site changes and the wardrobe challenges, but the good now does outweigh the bad).

I should not have done that.

I spent most of the next day battling super high blood sugars.  And for why?  I have no idea.  I'm blaming PMS and the Diabetes Gods laughing at me.

I started rising after my morning workout (not that unusual) but I never really fully came down.  It was kind of bizarre.  I am going to call my CDE and get a PMS setting on my basals.

That night, I also had a conversation with someone.  I'm sure it's a conversation many of you have had.

"So, I used to work for a guy with diabetes.  They had cut off his legs and he had all kinds of problems.  It wasn't pretty."

"Yep, that can happen."

(Beat.  I wait for it.  Oh yes, here it is.)

"Of course, HE didn't take care of it.  Not like you."

I thought of my 270 at lunch that I had desperately tried to bring down, and the fact that I basically ate lettuce, but it still  took hours to get down to 200. (Oh, and 200 is nowhere near the goal).  I thought of what that was probably doing to me.  I thought of how I worked my butt off to still see crappy numbers. I didn't say much.

I get tired of defending diabetics I don't know.  After all, maybe this guy did eat Snickers bars for breakfast, lunch, and dinner, and never took insulin.  I have no idea. However, I do know that even if he did eat like that, it doesn't mean he deserved to lose his leg.  I get tired of trying to convince people to blame the disease, because there is an element of self care that has to take place.  Still, it's exhausting.

"So, what are the long term complications of diabetes?"

"Well, there are heart issues, stroke, kidney failure, blindness, circulation problems that lead to the amputations you speak of, nerve damage, things like that."

"Wow, that list sucks."

"Yes, yes it does."

"But how is YOUR treatment going?"

Again, I thought of the day I was having.

"You know, pretty good, I guess.  I don't have any complications.  I take it a day at a time."

And some days suck.  Lots of them do.

Others, aren't so bad.  If he had asked me the week before, I'd be more optimistic, and think of the string of "no hitters" I'd been having. Still, if my life is cut shorter because of my diabetes, and people start talking at my funeral about how I should have eaten fewer carbs, the Diabetes Gods and I will team up and start haunting you.  Just remember that.

I need more insulin, please.

Tried to do an overnight basal test last night.

This is something we've been trying to do since I got the pump, but since I pretty much have been awoken with highs every night, and bolusing them down, it hasn't quite been successful.  Many times the boluses aren't that successful either, but that happened with shots too.  I swear I'm resistant at night, or it's possible that just lying there not moving doesn't really get the insulin flowing.

(One night, I bolused, and then set the CGM high alarm to 300 in case the bolus didn't work and I was too asleep to notice. I didn't want to wake up in the 400s. I am telling you, seeing the "acceptable range" be from 70 to 300 really makes it look like you have awesome control.  Everything is between those 2 lines.)

So last night, after dinner I was fine for a couple of hours, and then I went close to 300, and all these multiple highs are really setting my mood to "constant PMS" prompting my husband to ask things like "when are you just going to throw away that pump?"

Anyway, I set the basal to 150%, which didn't help.  So then I came home from a meeting and dug out a needle and gave myself a shot.  It felt strangely familiar.

20-30 minutes later, I get an alarm that I was "dropping rapidly."  I started crying with happiness. I never thought a 175 with double arrows down would get me so worked up, but apparently it does. As the CGM continued to report the uber drop, when it hit 101 with the arrows still double down, I pulled the pump off, seeing as how it was time for a site change anyway.

I still went low.  I didn't care.  I was thrilled.  My body can still go low!  I'm not doomed to 170's and above my whole life.  And while 59 is a sucky blood sugar, it was SO nice to see a 2 digit number.

Anyway, I did the site change.  And may I take this moment to say how much I still hate site changes?  They're so....constant.  I ate candy.  My sugars came up.  I fell asleep at 102.  I haven't gone to bed that low since Mr. Pumpy took up residence.

Woke up at 232.  Yippee.

So, that was a bust.  I know, I thought it was just a reaction to the low as well, but CGM showed the rise didn't really start until 4 a.m.  The low was at about 11:00.

You see, I did go in last Thurday, and we did tweak the insulin on the pump.  But by "tweak"  I mean, she let me add .05 units to the 2 a.m. hour.  I was like "I need way more than this."  And she was like "you're being your own worst critic.  I've seen far worse numbers for Type 1's, and an average of 170 with a standard deviation of 50 is pretty good."  And I was like "There's no way that's going to get my a1c down, and frankly, my moods can't handle the constant 200s".  And she was like "This will start your day lower, and everything will be lower with this.  We're still figuring this out, and we want to take tiny baby steps, because we want you to have a good experience." She kept saying that - Baby steps.

I get that.  Nobody wants to go on the pump and be bombarded with lows, not to mention the liability that creates.  She says to give this change a full week.

And if it did start my day lower, and keep everything lower, that would be great too.  So far, that doesn't seem to be happening.  How long does it take to adjust to the pump?  Seriously, I don't want to be the only Type 1 that hates pumping.  I'm already the only one that prefers syringes to pens. (I still carry a pen though for pumping emergencies, they're far more transportable, even if they do stink of insulin every time you prime them.)

I want to like this.  I want to like this A LOT.  I want to sing the praises of pumping to everyone who will listen, instead of wondering when I'm just going to give it up and go back to what "worked".

I guess nothing "works" as well as a pancreas.

Still.  I need more insulin delivered here.  Because nobody wants to be bombarded with highs either, and there's only so much of "constantly angry and weepy mother" my family can take.  There's only so much I can take of me acting like this, too.  It's like a line from "Buffy" - "This tone in my voice?  I dislike it more than you do, and I'm closer to it!" (Anya says it.  I love her.)

And if you aren't obsessed with an old Joss Whedon TV series, then I feel sorry for you.  Not really.  There's a possibility you might be normal.

How's the Pump?

How's the pump?  How are you liking your new...thing?  Didn't you get a new monitor or something?  How's that going?

I get asked this a lot.  Mostly because I put things on Facebook like "My new pump came today!  Woot!"

And so, how's the pump?  How am I liking my new thingamajig?

I want to say: It's awesome!  Best decision I ever made!  I should have done this YEARS AGO!!

What I really say, and what I really mean:  Um.  OK. I guess?

I don't know what I expected.  I knew it wasn't going to cure me.  But  I expected to love it.  I expected more convenience.  I expected more control.

What I get is - erratic numbers, a crap load of site changes, (the site changes!  Oh the magnitude of site changes!) a lot of tubing and all of a sudden my wardrobe choices become about where I can hide this thing instead of what I like and what looks good.  Also, this disease can't be good for the environment.  The amount of crap I throw away every 3 days is astonishing.

I don't like cargo shorts very much.  I hate things with big pockets, and yet, that seems to be the direction I have to go...unless I stick it in my bra, which, frankly, is where it ends up most of the time.  Please don't tell me to sew stuff, I can't do it and I will end up in tears.  Big, heaving sobs.  It won't be pretty.

It is not more convenient.  Being attached is not fun.  It catches on things.  It beeps at odd times.  (Well, I've turned it to vibrate, so there's that.) It keeps me awake at night. I waste a lot of insulin. A bottle of insulin used to easily last me the month I was supposed to have it open.  Now, not so much.

And also, stuff like this happens.

These two things are supposed to be attached. I don't know how long it was broken before I noticed, but my bg was over 300. Also, this held over 100 units of insulin in it that I couldn't use anymore.  Also, my life kind of depends on things STAYING CONNECTED.

You see the badness?  I will tell you that tech support FREAKED OUT and sent me lots of new cartridges and a return label to send this back, plus send them back all cartridges from the same lot, and then they called the day the new cartridges arrived (which they had overnighted) to ask when I could send this back, because they were very very anxious to look at it.  Apparently this is not supposed to happen.

(Also, at my next site change, before throwing away the used cartridge, I tried to make this happen again. I twisted.  I pulled.  I stomped on it, I did everything I could short of giving it to my dog to chew on it, and nothing.  That sucker would not break, and I am still scratching my head as to why it did).

You see, when I was on the shots, and I went high, I would give myself....a shot.  I knew the insulin went into my body because I put it there.  And then, if I didn't come down, I knew it was something in my body.  Dehydration, stress, some weird hormone thing, something.  But I knew the insulin had made it in there because I could SEE the needle.  It once had liquid in it, and now it doesn't.  That liquid went into my body because I injected it there.

Now, if I go high (which I seem to be doing a lot more often, BTW), I push some buttons.  And if I don't come down, I don't know what happened.  It could be any number of the body issues above, PLUS it could be kinked tubing, a failed battery, something weird with the cannula, poor site absorption, or some failure somewhere that I didn't know existed.  In short, it could be the machine.  And as I battle these highs, I don't know if it's the machine or me.  And that is...DRIVING..ME..CRAZY.

I mean, there are enough unknowns.  Adding more does not help my mental health.

Yes, I disconnect and give a test bolus.  Yes, sometimes I end up doing a shot.  Yes, sometimes I do another freaking site change.  And yes, all of this is.....super inconvenient.

There are definitely some pros. It is nice to know that if I forget something, I always have my insulin.  That is good.  It is nice to not have to do the shots, button pushing is more fun and causes fewer stares.  And the extended bolus is awesome. Plus being able to bolus for 5 grams?  Sweet.

I know (hope!) that most of these issues will be resolved as I get more used to this.  I should get better at estimating the amount to fill the cartridge so it's almost empty by the time I have to change it, which will reduce the waste.  I should get used to being attached to this thing. It doesn't help that I got my first real "sick day" shortly after I started pumping, and I spent the weekend in bed trying out the option of temp basals and sleeping.  I couldn't get below 200 to save my life.

Mostly, I got the pump because I wanted better numbers.  I wanted better control.  I can put up with the being attached and the tubing and the multiple site changes if it increases my blood sugar control and/or drops my A1C.  So far, not so much.  In fact, I would definitely say the control was better on the shots, and even though I have only had one low so far on the pump, it's probably because I spend 99% of my time above 150.  And my nights are often above 200 most of the time.

This probably (definitely) means I don't have my levels set right, and need to up my amounts again.  I meet with the CDE again this week.  We've already upped them once since setting the initial amount, and that pretty much did nothing.  It might as well not have happened.  And I know it shouldn't, but upping the levels makes me feel like some kind of "diabetes failure" as if I should only need a certain number of units a day or else clearly I am doing things wrong.  But higher blood sugars make me feel far worse than higher levels do, so up them I will.

Everybody else seems to really like the pump.  So I'm going to stick with it for a while longer.  It's only been 2 weeks, after all. And I know I'm often averse to new things.  When I switched to an iphone from a droid, I fully expected to love it, only to find on that first day I hated it so much I wanted to throw it out my car window and drive over it. Now, of course, that might not be the best example, because I'm still not a fan of the iphone, and it's been over a year.

So...how do I like the pump?  OK, I guess.  Give me a time. Today is not the day to ask me as I soared over 300 post breakfast eating a meal I eat very frequently.  Was it me or the machine?  Who knows?

The Drums of Diabetes

Once upon a time, my brother gave me some insight into the workings of the male mind. He said that, basically, they think about sex all the time.  (In other news, water quenches thirst.)

He compared his thoughts to musical instruments.  The "drums of sex", as it were, were always going.  Sometimes they were VERY VERY LOUD, and that was all there was room for, and sometimes a lot of other things were going on, and the drums were just in the background.  Always going, but softer, not taking over.

Diabetes is like that.

The drums are always going.  Sometimes, when you are going along, and it's been a "no hitter" kind of day, the drums are soft, just adding to the background noise of your head.  You know they're there, but it's not that big a deal.  Still, though, you can't stop them. But sometimes they're just basic bongos.

Not so bad.  Drug related, yes, but not bad. 

Other times, you are crawling on the floor, and the drums are so loud as you frantically search for sugar, and it's possible that there's some right in front of you, but you can't seem to comprehend it.  The drums are too loud -they're making everything else fade, quite literally.

Yes, diabetes.  I can hear you.  I know you're here.

Sometimes the drums are beating against your head, as you battle the migraines that accompany the lows and the swings.

Make. It. Stop.

Sometimes the drums invade your dreams.

And sometimes we can't even get enough sleep to get to the dreams.

Sometimes the drums give you a reason not to do unpleasant things.  "Sorry, I'm just not going to be camping, I don't think my insulin would like the heat."  Because, camping?  Sucks.  Plus, there's no bathroom.

Diabetes gets me out of this.  Of course, if you like, go right ahead. 

Sometimes the drums make you pull over and listen to them instead of getting where you needed to go.

Pay no attention to the woman in the car.  She's just sitting here waiting for her blood sugar to go up,

So in my head?  The drums?  It's not sex.  It's diabetes. I dream of a life without a percussion section in my head.  Because here's the thing. My instrument of choice is the flute.  I did not ask for drums.  Please make them go away.

I love you, Animal, but I need fewer drum solos in my life.

(Here's some boring stuff so I don't get sued: The images are from various websites.  The bongos I'm not sure, because I just google imaged, and then forgot which one I took from.  The loud drums are from barrydallman, of course the comic is no great shakes, the drumsticks are from ehow, and the car is from oldparkedcars. The animal picture is obviously a muppet trademark, but this particular image is from marshallforum.)  

Sheldon and his bongos are from Big Bang Theory, the greatest show on TV.

Pumping Like A....Novice.

It's Day Two, and I'm all hooked up!  I'm a cyborg now.

I went in and spent 2 and half hours with the CDE/T slim rep who when she heard I was coming, thought I was a different Heidi who was already on a pump, so instead of just training for a "pump upgrade" like she thought, she got to explain the finer points of pumping along with the finer points of the T:slim.

HAHA.  Sucks to be her.  She's super nice, though.

First of all, this is a crapload of tubing.  SO MUCH TUBING.  When the (other) Tandem rep called and asked what kind of infusion set I wanted and how much tubing, I was pretty much clueless, and I said I wanted the shorter length.

"Oh, are you kind of a short person?"

"No.  Five seven."

And she convinced me that I wanted the longer tubing and if there was extra, I could just tape it to my stomach. So I listened, because surely she knows more than a novice like me, and she was wrong, and now I have massive amounts of tubing getting in the way of everything.  The reorder will be shorter for sure.  The CDE was mildly annoyed about this - "Does SHE want things taped to her stomach?"

(This is my body now.  Super, super sexy.)

Second of all, at dinner, I bolused for the meal and then I ate some Froot Loops and then I didn't have to find another needle, and that was cool.  Also, I mostly ate the Froot Loops because of this.  One of the the reasons I wanted the pump was so I could eat more if I decided I wanted more than the initial guess finely tuned calculation of how many carbs I would eat. Breakfast cereal and I don't really get along, and I don't really remember the last time I ate some, apart from granola in Greek yogurt.

 (Hello, my little bowl of carcinogenic death circles.   I love you.)

Third of all, it is bizarre not to reach for that bottle of Levemir at night.  It's become kind of a bedtime ritual, and I can't go to sleep until I've checked my sugar and dosed the basal.  Last night, I didn't do it. This morning, I reached for the bottle first thing, only to remember that could potentially be very bad.  The tubing reminded me of this.

(It reminded me of when I got Lasik surgery.  The very last thing I did every night was take out my contact lenses, and everything being blurry became a sleep trigger for me.  Falling asleep with good vision took some getting used to - I did not realize how much I depended on this, and insomnia followed for a week or so while I adjusted.)

Fourth of all, I still went high at midnight.  Grrr.

Fifth of all, apparently my wardrobe is completely wrong for hiding this thing.  I guess everybody will just think I have a pager. I should probably buy some belts for clipping.  Also, running shorts were recommended?  To stick it in?  But doesn't that mean I will be go digging around in my pants/skirt in order to reach that bizarre bulge?  That doesn't seem creepy at all.

Sixth (and lastly), what with this and the Dexcom site, and all the rotations, I am going to seriously run out of real estate.  The gal said she had some clients who put the infusion sets on their boobs because of the side effect of fat buildup where the insulin was, but she wasn't recommending anything.  Now there's a benefit I never considered.....

So far, so good.  I think this is a good thing, even if it will take some experimenting, some adjusting, and some swearing along the way.

Quick! Tell Me Everything!

My new T:Slim pump comes on Friday.

So excited.

Also, freaking out.

Often, change is not my friend.  But I think this will be good.

I didn't know the answers to "How long do you want your tubing?"  and "Which infusion set did you want?" Um, you can't send me one of each?  Let me wear them all and then choose?

So, quickly!  Tell me everything I need to know about pumping.  Pros, and how to enhance them.  Cons, and how to diminish them.

I will of course meet with a T:Slim rep who will help me out.  What questions do I ask her?

Also, when you start pumping?  What do you do about the basal insulin (for me, Levemir)?  Not take it the day you start the pump?  Not take it the night before?  Take a little?

Help me.

Went to the Endo today

Got some blood work, had a little chat, it was all good.

I was very nervous to tell him I had taken myself off the Lipitor.  There are plenty of doctors who don't like that, they call it "non compliance" and you can be dropped for it. My PCP would argue with me a lot about it.

(Just in case you were wondering, going off the meds helped a lot. Within a few days, correction doses were working again.  Insulin actually brought my blood sugar down.  Meals weren't a nightmare anymore.  It was a miracle.)

And then I remember why I love my endo so much.

He said things to the effect of "You know, I see a rise in blood glucose in some of my Type 2 patients with the statins, not yet in a Type 1, but that doesn't mean it can't happen."  "There's just a lot about drug interaction we just don't know. It really needs to be studied more"  "I'm going to bring this up in a conference I'm going to, see if others have dealt with it."  "Let's check your cholesterol and run another VAP test, and then we can revisit the statin issue if necessary".  "Have you tried red yeast rice?"

He didn't judge me.  He didn't roll his eyes.  He didn't tell me how much the benefits outweigh the risks.  He just listened and believed me, which he ALWAYS does, and this is why I LURVE HIM.

Then he looked at my chart, and then at me and said "Did you not want a pump?  Why aren't you pumping yet?"

YES.  YES I want a pump, last time I asked for one and we were going to wait to see if the T-slim and the dex talk to each other, but I'm tired of waiting, and let's do this thing.

"OK, let's check 'volatile control' and 'major swings' and see if you can't get approved.  You got approved for the CGM, so it should be OK, but I'll tell them how much you need it.  Your a1c's might not be bad enough, though.  Let's try, though."

And so I began the paperwork for the pump.  SQUEEE!!  Let's see how this goes.

A1c came back at 6.9.  This is still "under 7" but it's also "the highest I've seen since diagnosis" so I'm not really thrilled about it. I'm also not beating myself up either, it does reflect a lot of hard work, and I can't really say I'm surprised either because you know, lots of highs.

Cholesterol - with no statins, is pretty much the same as it was with the statins, and the LDL was in the 160's, which isn't stellar, but like, you know, whatever.  HDL was over 50, which is awesome, so there's that. He didn't tell me the triglycerides, which means they were good.  My triglycerides have always been good, and those seem to be the real indicators for heart disease, I think.  What do I know, though?  I could be delusional.

I'm happy to see the new results of the VAP.  Let's see if this is still fluffiness flying around in there.

Hopefully I'll be a cyborg soon.  Fingers crossed for the pump. :)

I Have No Answer

How many total insulin units do you take in a day?

I hate. this. question.

Because honestly, I don't know the answer.  And to say "it varies" does not go into a nice little check box.

"Just guess."

Is it my birthday?  My kid's birthday?  Have I been sick?  Is it my period?  Have I been exercising?  Have I been depressed?  Did I run out of eggs?  Did somebody take me to the cheesecake factory?  Have I been going low carb?

"Just, you know, a typical day."

I have no answer.  A typical day doesn't exist anymore.

I can tell you how many units of Levemir I take.  Novolog, I can't really tell you.  Did I have the dawn phenom? (Probably, but not always)  Did I go high at night (Probably, but not always).  Did I overcorrect a low and have to bring it down with insulin?  Did I switch cholesterol medications and suddenly become insulin resistant for no reason?

"So....like 12? Maybe 4 per meal?"

I HATE THIS SO MUCH.

"Sure.  Put that."

I get why some people have to ask it.  Clinical trials like to say "we took this person from x units a day to y units per day."  Only numbers are useful.  But honestly I can take anywhere from 0 - 8 units per meal depending on where I started (oh look at that high!) and what I'm eating (hello, spinach salad).

 Plus snacks, if I'm feeling like I need one. And frankly, I rarely snack, and I miss it.  I'm thinking the pump will help with that, but then it will increase the number of units I need per day and that is bad because....you know.  It just is.

I always wonder how the trials do it, unless the patient is eating the same thing over and over and seeing if it changes...which of course it will just with regular diabetes, so, there's that.  I did try to keep my meals consistent when I was on my trial so they would know if there was a difference. But are all patients doing that?  I don't know.

My doctor always asks this.  I'm so tired of it.  I always say "it depends on what I'm eating" and he says "your chart says 3 per meal.  Is that about right?" and I say "that's what the idiot hospitalist told me to do at the hospital when I was diagnosed and didn't even say anything about varying it per carbs.  Thank goodness the CDE brought it up." "OK, good, so you're carb counting.  Well, we'll just leave it."  And then we have the same conversation every six months.  "Are you still at 3 per meal?'

I bring this up because I thought I would sign up for some more clinical trials if they'll have me.  I am all for experimental drugs.  But then I am paralyzed every time by this question.  EVERY TIME. Can I please just say VARIES?  Because it does.  And I bet it does with every Type 1, all the time.  No trial has heard of temporary basal rates for exercise or illness?

Nope.  Just put in a number.  Guesstimate.  Give an average.

The BEST is when you are at a non-diabetic doctor's office (like the ob or the dentist) and they ask you to list your medications and the dosage.  "So, the Novolog, how much?" "Changes daily."  Blink. Stare. Silence. And then I give them an accurate answer:  "One unit per 10g of carbohydrates if it's breakfast or dinner, and and 1:15 if it's lunch, plus one unit for every 50 points of correction needed, and if I exercised really hard, I change all of that by 5 points."  "So....how much is that?"  "I don't know."  And then as they stare at me blankly, I say "You can put 12 if that makes you feel better, although sometimes it's double or half that."  And they nod and put 12 and scurry away, grateful to deal with people who can say "10 mg."

I have an endo appointment next month.  I am going to ask for a pump.  And a billion people are going to ask me how much I take every day so they can help me figure out how to work the pump. And I might just cry.

How do you answer this?

Dream Diabetes Device

I am going to use the "wildcard" option for this D-BLog week post.

Prompt:

Back by popular demand, let's revisit this prompt from last year! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?

I would LOVE to see a device that measures the efficacy of insulin.  I want to know if the Arizona sun has ruined the insulin, if this bottle is too old, if a batch is bad, etc.  Much like the "control solution" can tell you if your meter is working, I would love to be able to add a few drops of insulin into a device that would say "Efficacy: 100%.  or Potency: 80% or whatever."

THEN, you could add that into your pump (if you had one, which I don't, but I will someday soon) and have it calculate for you.  Insulin needed: 4 units, efficacy is currently at 75% so I will deliver 5 units so you get 4 fully effective ones.  (If that math is wrong, I'm sorry.) (The pump would do it right, though.) (Probably). And that, my friends, would effectively prevent, or at least explain, some highs.  Also it would cut down on the wasted insulin, because you could use the entire bottle, even it has been open a long time.  Also it would be awesome.

Please pay me money for my idea.

Thank you. :)

Other posts here.

D-Blog Week - Biggest Accomplishment

Ok, so it's Diabetes Blog Week.  I'm supposed to have been blogging about various topics all week.  I haven't been, and I'm OK with that.  The DOC will forgive me - they're cool like that.

This is the prompt for today -
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.

Not to get all mushy or anything, but my biggest accomplishment happened last night.

I found this on YouTube.  Weird Al made my night.  My week.  My diagnosis. You're welcome.  






More blogs on this topic here.

Is it due to a medication change?

So...I really like these ICE drinks.  Today I grabbed a grapefruit one at the store.

Then I remembered I wasn't supposed to drink grapefruit juice while on this stupid statin drug, even though there was probably very little actual juice in it, I decided to forego it, because well, I am little, and don't need extra drugs circulating in my system.

Except.  I went and read about Lipitor and grapefruit juice, and came across the "juicy" little tidbit (ha!  see what I did there?) that Lipitor can raise blood sugar, so please tell your doctor if you have diabetes.

!!!!!!!!!

I should have known this.  I should have read more about this when they switched my statins, whining about how Zocor wasn't doing the trick.  (They were whining about the Zocor, I was just whining about how much I hate statins.)

Personally, I do hate statins.  I think high cholesterol is a fake problem. I argue with my doctors every time.  My triglycerides are always super awesome and that's where I keep reading the real problem is, not with the total number, or even the evil "LDL."

I did not go to medical school.  They know this. I know it too, and so I yield.  I am still bitter, though.

Anyway, he switched me to Lipitor a while back but for some reason the pharmacy didn't get it and so they kept filling the Zocor.  I did not see the need to fuss about this, but when the year mark was up for the Zocor, they said the doc would not refill that scrip and so here's your Lipitor, lady.

Okee-dokee.  I'll be "compliant".  I'll take my pills.

After reading that about the blood sugar thing, and how it can cause Type 2 diabetes, especially in women, especially if your BMI is under 25, I got very curious.  I went back through this blog.  I went back through my prescription history.  Coincidentally, I started whining about I was battling highs constantly and the insulin wasn't working, and maybe some residual beta cells died at EXACTLY the same time I switched to Lipitor. (March)

I pretty much guarantee this'll be brought up at my next doctor's appt, which is next month.

You can also bet that I will not be taking the Lipitor for the next month to see if my sugars go back to behaving, at least as far as they usually "behave." Because seriously, lately it seems like I can't get below 200 to save my life. I am up night after night trying to bring this down. A shot at 10, another at 2, and finally at 4 my sugars are down, only to rise again at 7.  My fastings are terrible.  I have increased my Levemir, I've changed the ratio, I've started exercising 4 times a week instead of 2.  And apart from eating pizza, nothing has helped.

I've really wondered about insulin resistance, and why I would develop such a thing now.  This might be the answer.

Today.  Sadly, very typical lately.

Hopefully I've found an answer to the high sugars.  Hopefully we can deal with the cholesterol in a separate way.  This is my hope.  Because truly, I do not want any complications, and NOTHING is more frustrating than doing everything "right" and still having the results suck.  I might as well be eating cupcakes and jolly ranchers.

Expensive Days

March 28 was a very expensive day.  I backed into my friend's car, doing damage to both our vehicles, and then I ran my Dexcom G4 through the washing machine.

I am finally wearing a new CGM.  It's been nearly a month. O continuous data, how I have missed you.

(And no, nobody was hurt when I hit the car.  Just my pride.  It was, after all, parked - right behind me.The car, that is.  Not my pride.  That would be odd, yet cool.)

(NOT meant to clean medical devices.  Apparently.)


I went through basically a mini-version of the grief cycle. The first day or two, I missed the Dex desperately, but I was in denial about what I had done and I took to staring at it in a bowl of rice and practically mediated over it to get it to come back to life.  I knew that it would work again.  It survived the snow.  It would survive this. Ipods fall into pools and are fine a week later. It kind of looks like an ipod.  It would be fine, It WAS fine, everything was going to be fine.  It was almost a mantra..

Then, I felt an odd sense of freedom, no device attached - it's almost like I can pretend I'm a normal person with a working pancreas! (Note: not having a CGM does NOT magically make your pancreas work again. Denial is a funny thing.)

And of course I was just really really mad at myself for doing such a stupid thing.  It was a day of stupid things, really.  Who doesn't look behind them and see a car parked in their driveway as they're backing out?  Who forgets that?  (In my defense, there usually aren't cars parked in my driveway when I'm in the garage, but still. That's a stupid defense.)  And then who doesn't check pockets when throwing bathrobes in the washer?  Again, getting defensive here, I usually don't have stuff in the bathrobe pocket, it's not like it's my jeans, but still.  NO DEFENSE.  I am clearly a moron and should not be allowed to have stuff.

Then there was the sadness of not being able to obsess over data, and the guilt over kind of enjoying it sometimes. There was also the frustration of terrible blood sugars and not knowing how long they'd been like that, and lows that I didn't know I was having, and the basic awesomeness of diabetes.

I did lack bargaining.  There was no bargaining.  Running expensive medical devices through household appliances is not covered under anybody's warranty, and really, it shouldn't be.

Even though it totally should be.

And after a lot of phone calls, and re-sending of scripts, and it taking forever to arrive, except once the script was re-sent, it was super quick, so I don't know if I should blame Dexcom for the slowness or my doctor, and I don't really care, because IT IS HERE.

And I am happy.  Acceptance.

Also, I have a new car.  A red one.  So I'm extra happy, although now I have a car payment, where I didn't before.

(It's a Mazda that loves its Volvo.  This makes me laugh).

I've said it before, and I'll say it again.  This disease is expensive.

Who Knew?

First of all, I do not recommend taking a biology quiz while your blood sugar is at 350.  The brain fog is too intense.

That was my yesterday.  I ate my normal fiber bar in the car on the way to my class and while I was sitting there, I felt terrible.  I couldn't seem to stop yawning, and the lecture was super fuzzy, and despite the fact that most of this can be chalked up to the fact that this class is at 7:30 a.m.and the prof has a very thick accent, I decided to check.  352.  I was angry. Pre-meal was 149, and really, there's just no call for that, diabetes.

Fortunately, the correction bolus did work by the time the quiz rolled around, (mostly because the teacher forgot to bring the quiz and had to go print another one out, and he was very concerned that he hadn't brought the answer key, which just feeds my theory that my biology teacher doesn't know biology very well) and I was "only" at 200.

And in continuing with the theme of my last post, high numbers have been plaguing me lately, especially at night, and I am less than pleased about it.  (92 that day at lunch, though.  Boo-yah).

Also, it doesn't help that I ran my Dexcom receiver through the washing machine. (Shocker, right?) It may have survived the leaping out of my purse, but the washer was a bit much. It doesn't work.  I am waiting for a replacement.  It's taking a while, probably because my doctor is slow about signing faxed scrip requests.  Maybe this new one will like me better and not try to run away so much.

So last night when we headed to a "Spring Fling" carnival at the school and the only food offering was pizza,  I sighed.  I bolused.  I ate.  I prepared myself for another nighttime battle. I mean, if my dinners of grilled chicken salad or cobb salad and tomato soup weren't doing me any favors, surely the pizza of doom would send me over the edge.

Bedtime:149.  Ok.  I decided I wouldn't correct it down, and check in the night.

2:00 a.m.  101.  Sweet.

8:30 a.m. 117.  I haven't seen a fasting that low in a long time.

I've figured you out, diabetes. Domino's for the win.

Warning. I whine a lot.

I think I might have had like one beta cell doing its thing, and now its dead.

I have no basis to think this, except that the rebound highs from lows are spiking over 300, when they NEVER got anywhere near that high before.  And I mean they got that high after I corrected.  Like last night, I went low after dinner - not a terrible one, but still no fun - and I knew I ate too much.  I corrected when my blood sugar hit 135, to counteract the high I knew was likely.  It went up to the 380s.  THREE EIGHTIES.  Fortunately, it responded well to the second correction bolus, and I wasn't up all night battling highs, like I often am.  I guess I should have corrected at 200 when the CGM buzzed, but I figured I had some insulin on board....whoops. But you know, it's hard to know.  I had to ask myself if I wanted to correct or wait, because what if I corrected then, only to go low again?  Even with a cgm, knowing what to do is rough.

Anyone else have a body that says "I don't care if you injected insulin, it's nighttime and I am doing nothing about it?"

I am battling the swing of highs and lows like I've never had to before. For someone who's seen 300 once since diagnosis, (except when I get served real Dr. Pepper instead of diet) seeing it pop up so much this week is very disheartening. Swinging does not feel good, in case you were wondering.  And if I'm not swinging, then I am not coming down post meal like I should.  I get up to about 160-180 after I eat, and just stay there.

I have switched out every bottle of insulin for new ones.  I have adjusted my Levemir to a slightly higher dose. Which for some bizarre reason, that made me feel like a failure, like if I need more basal insulin I am doing something wrong - stupid liver. I still have the dawn phenom and what I like to call "the dusk phenomenon" going on to a degree that is not good.  (I go high in the morning and at night - I don't know what that's about, but I hate it.)  I am pounding the water.  I don't really like water, but I am drinking lots of it trying to keep hydrated, knowing that's crucial for control.

I haven't exercised much this week, my exercise buddy is out of town, and doing it myself is no fun at all.  So that's different, but still.  I have NEVER see sugars this high, and that includes diagnosis.

My next appointment with my endo isn't until June, when I will get prescribed a pump.  I am thinking I should call him and try to get in earlier, but seriously, I know that if I do, I'll show up with 2 weeks worth of perfect sugars because diabetes KNOWS when I call the doctor, and it behaves accordingly. And what's he going to do, really?  Tell me to try more insulin.  Be nice.  Charge me money.

So I am at a loss at the whys and what to dos.  You'd think after 4 years I would know, but I have learned that you  NEVER know, even if it's been 40 years.

I swear a couple of beta cells are dead now, when they weren't before.  I feel like holding a funeral for them.

The D at night.

Dex woke me up last night saying I was high.  Which is not unusual, and what I want to know is, does anyone else go high sometime between midnight and two a.m. fairly consistently?  What is UP with that?

Anyway..I woke up.  I took care of it.  I went back to sleep.

Or so I thought.

Because when I woke up later to pee, I glanced at Dex just to make sure it was all good, and a 352 was staring me in the face.  What the chicken?

And as I thought about it, I was pretty sure I didn't actually dose when it woke me up.  I just went back to sleep, and dreamed about dosing.

Nice.

Back in high school, I used to hit snooze and then dream I was showering, getting dressed, all that jazz, and I was all ready for school, only to have the alarm go off again to show me I was still asleep and going to be late. I hated it, because in my brain I had already gone through the motions of doing my stupid hair, and now I had to do it again?  Blerg...I swear there was one day I "got ready" 4 times, but only the last one counted.  This was just like that.

Maybe Dex needs two high alarms, just like it has two low ones.  Yes, that's what the Dexcom needs....MORE BEEPING.

Diabetes Stole My Day

I would like today back.  I had things to do.  But, alas, it was not to be.

It wasn't so unusual.  After the kids were at school and the hubs was at work, I got the house cleaned up.  I had an unusually high morning sugar (229!) but wasn't too concerned about it because it hadn't been high for very long (thank you CGM), and I am not a stranger to the dawn phenom, although, like everything else, it cannot be counted on to show up every morning.  Just when it wants to.  I corrected, bolused, and ate the same breakfast with the same dosage I eat probably 80% of the time.

Hours later, after hilariously trying to fix pool stuff I do not understand in the least, I started to think about lunch. The dogs are asleep on me, which is very sweet, and the next best thing to a newborn on your chest.  I consider driving through somewhere on my way to my errands. I decided not to disturb the dogs just yet, after all, it was only 12:30, and I had eaten breakfast around 9:30.  I have gone much longer between meals, and it's not like it was a morning where I had worked out.

And then the CGM buzzed.  59.  OK.  I guess I better get up and deal with this.

And then it hit me.  One of the lows that has you crawling on the floor begging for any food that anyone will throw at you.  A low that has your CGM abandoning all pretense at numbers and just screaming the word LOW at you.  One of the lows where you know you're going to overtreat, but you don't care, because this is one of the scary ones.

I eat a couple of Starbursts.  I do not feel better. I am sweating like a crazy person (although frankly I don't know if crazy people sweat more).  I call my husband and ask him to stay on the phone with me until my sugars come up. I check the monitor.  41.

I crawl into my room. We have a stash of Halloween candy we bought off our children and I use it for this purpose.  I begin shoving Butterfingers and Twix.  I eat a Reese's.  I take off my nasty sweaty shirt and somewhere something registers that if the paramedics have to show up, I might want my shirt on, but at this point I do not care because the sweat is the worst part.

And slowly, slowly, I begin to feel better.  Things are looking up, literally.  The CGM still says "Low" but with an arrow slanting upward.  I let my husband go back to his lunch.  I get dressed.  I am upright again and walk to the kitchen and assemble my lunch, staring at the leftover Chinese food and wondering just how to bolus for this plus the candy assault I had just launched at my body. And ooh - there are some Saltines! Those look good.  Might as well eat those too. I must have done alright because my sugars never raised above 170.

(Until later when I continued to eat Saltines for no good reason except that the salt tasted good after all that sugar, and I conveniently didn't bolus for them, because really, one cracker at a time isn't that much.....THEN I began to soar).

And then you would think it was over, right?  A scary time, yes, but when all is said and done, it was really only a half an hour out of my day.  Still plenty of time to get everything done.

Except.  Except for the headache.  Except for the fatigue. The Hanglowver I believe it's called. And except for the emotional toll those suckers take on me. What if I had decided to get in the car to get lunch?  What then? Usually I'm in class on Friday mornings.  What if this had hit while I was there?  I know.  I would have been fine.  Embarrassed maybe, as I sweat and ate massive amounts of candy, but fine.  And so I chose to catch up on Tivo'd shows and instead of worry about the pool, just sit by it, and just try to remind myself that it's all good.  These aren't that common.

But what they are is hard to predict.  I had absolutely no reason to believe today would be a day that the low monster would grab me in his paws and not let go.  That today was a day where diabetes likes to channel the girl from the Labyrinth and try to convince me that  "You have no power over me."

Usually I'M Jennifer Connelly and diabetes is the creepy David Bowie dude.  But occasionally...

Just about sums it up...

Pretty much all I can hope for at this point is that all these people working on different cures spark an "arms race" of sorts to be the first to get this done.

(I still like Faustman.  She's the only one addressing the immuno issue.)

(I will take everything and anything offered, though.  Let me be clear on that.)

Everybody's Got a Cure....Links and Stuff

It seems I have been hearing a lot of the cure lately.  And so I will tell you what I've heard....

First of all, Dr. Faustman has raised over 14 million.  She has reversed Type 1 in mice, and she continues to put together her protocols for Phase 2 of her clinical study, and hopes to enroll patients sometime this year.  I will be headed out in September to give her blood.  Sweet.

Second of all, dogs seem to have gotten in on the cure action, and since they gave us insulin, it seems only fitting.

Third of all, this guy has a big announcement he can't wait to tell us about, and yet he can...

Fourth of all, cancer drugs fix everything. .

Fifth of all, a bionic pancreas is in the works.

Of all these cures, I really think that last one is the only thing that will lead to anything.  Why do I think that?  Because it's the only one that forces us to stay dependent on devices and injected insulin.  Seriously.  3 devices.  2 pumps and a CGM.  The cost and the maintenance will be a pain.  It will be so much better than what we have, but it will be expensive.

The rest of them will actually make our bodies do the work, and we can't have that, oh no, we can't have that.

So I sit, and wait, and inject, and test, and sigh.  I do hope a little.  Somewhat.

And I drink Diet Dr. Pepper.

Dex and Control Issues...

The best way I know to control your diabetes is to lose your Dexcom receiver for a couple of days.

You will be waiting around for that beep and buzz that you're high, or low, so you can FIND that sucker, but no...your sugars are at 100, or 83, or 130.

I did find it that way once.  I couldn't find it, and then my usual nighttime high hit, and bam!  There it was, beeping at me from THE RECYCLE BIN.  Why it felt the need to leap in there and recycle itself, I'll never know. It has issues. It probably feels very strongly about the environment, and was making a statement.

I also think it wants to travel and meet other people.  For the past 2 days, I have been frantically trying to find it.  I knew when I had it last, I had calibrated it in the car right before piano lessons.  But then I couldn't find it.  I pulled apart my house.  I pulled apart the car. I called the piano teacher.  She pulled apart her house.  Nada.

I waited for the high to hit.  I'm thirsty...that's a good sign...check sugars...nothing.  I fell asleep, (at a perfect 100! that never happens) and going 2 nights without it has taught me how incredibly dependent I am on this.  I waited for the morning dawn phenom to kick in.  114.  Excellent.  Grr..I hadn't even taken out the trash, leaving a full bag in my kitchen just in case it decided to have a conversation with the used napkins and moldy tomatoes.

This morning....the piano teacher's son called.  They had found it!  It was in their front yard!  A neighbor asked them about the black iPod in their yard, probably hoping he had just found a new gadget for himself. I guess Dex and my purse don't get along.  She kicked it out, apparently, or else it decided to make the leap again.  Unfortunately, leaping into a yard on the one day a year we happen to get snow in Southern Arizona isn't the wisest decision.

And so they just dropped off my Dex. It is still working, thank heaven.  The piano teacher's son had a charger that fit, (and if you know him at all that won't surprise you in the least) and has been charging it for the last hour.  As soon as it saw me, "172" popped up on the screen, further supporting my theory that sugars are better controlled when it's not around.  Not that I want it to leave again.

I guess going high or low wouldn't have helped anyway.  Plus I couldn't make myself do it on purpose. 

But seriously, it needs to stay with me.  The world is dark and wild.  Hopefully it learned that.  And maybe I might just start using that zipper on top of my purse.

(That same purse HAD recently kicked out my transmitter too after I removed it when it was too itchy...I'm thinking we need to have a talk.)

And the Winner Is

We have a winner!

The number is 391!!

Her name is Mindi P!

I couldn't be happier.  I know Mindi, she is a lovely lovely person.

In fact, I think everyone who gave is a lovely lovely person.  I know this is a terrible time to have a fundraiser.  I know so many people's paychecks went down with the new tax changes.  I know you are all working on your taxes and yet nobody's received their refund yet.  I know paying for the holidays is still stinging, and I know there are many New Year's Resolutions to stick to a budget and save more money.

So I just want to say thank you.  THANK YOU.  I got many people who said "Sorry it's not more."  Well, technically I could be sorry it's not more as well.  It would be great if everybody could throw thousands and thousands of dollars to cure my disease.  But I am not sorry.  I am just happy.  We raised right around $1200, and that, my friends, is $1200 Dr. Faustman didn't have before.

So THANK YOU once again, and CONGRATULATIONS, MINDI!

UPDATE ON THE FUNDRAISER/GIVEAWAY

It has come to my attention that when donating to Faustman labs, there is a place to enter an alternate email, and they say that a notification will be sent to that email.  I totally spaced that. mostly because every time I've donated, I've never felt the need to let somebody else know.

It came to my attention because somebody I know entered my email in that spot instead of forwarding me her receipt. Then when I did not respond, she wondered what her ticket numbers were.  I hadn't received a notification of her donation.  I am not sure when MGH sends those notifications, but it would appear that they are not automatically generated.  I'm guessing they do it once a month?  I am not sure.

So,  if you have donated, but have not received an email from me with numbers on it, please forward me the copy of your receipt so you can be entered to win the Ipad mini.

Here are the steps:

1. Go donate.  Every $3 gives you one "ticket" number.

2. Receive receipt. (This IS automatically generated.  You will get a lovely notice about how you are keeping medicine alive and whatnot).

3. Forward me the receipt.  (Your credit card number is NOT displayed.  I will not spam you.  I am a nice person.)

4. My email is heidithewiz at gmail dot com.

5. Receive email back from me with magic numbers on it.  (They're not really magic. No beanstalk will grow if you plant them.)  I am fairly good at emailing back in a good time frame.  It shouldn't take more than a few hours.

6. Keep receipt for your tax records.  Deduct amount next year.  You know, if you remember.

7. Come back to my blog on Monday to see if your numbers actually were magic and caused an ipad mini to appear in the mail.

This giveaway closes on SUNDAY, FEB. 3 at MIDNIGHT (Arizona time).  At that point, I will put all the numbers into random.org, and display the winning number, along with the winner's first name and last initial.  As in "Congratulations go to #0 HEIDI K." (Which I won't actually say, because that's me, and I'm not winning my own contest.  That would make me a NON nice person.)


SO BASICALLY, IF YOU HAVE DONATED BUT NOT RECEIVED ANYTHING BACK FROM ME, PLEASE EMAIL ME.


The end.

See original post here.