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?