The Hardest Thing

I was going to write this after a week, but my desire to be kind overcame my desire to spill my guts. One of the most valuable things I've realized over the years is that writing angry is simply a bad idea. In overcoming my anger and frustration I chose silence until I could accurately come to grips with my feelings about my diabetes technology. I was more concerned about being nice than voicing my unhappiness, which is a horrible thing as a consumer (and blogger). So here are my thoughts as unfiltered as possible. Scroll down to the bottom for a brief recap.

I forgot how much picking a pump is like buying a car. You have these perceptions and this belief in what you'll get: sometimes it's better and sometimes it's worse. You never know until you drop into the driver's sear for a while. Fun fact that I learned: Medtronic Minimed (MM) has a 30 Day Return Policy. It's not advertised anywhere but they will tell you if you ask. If they really want to continue testing out their device, they will offer to extend that to 60 or 90 days. Honestly, I wish the 60 or 90 days was standard because how can you really know whether the system isn't for you or if you just need to become more comfortable with using it? More on how I knew for sure later.

After one week, I wrote this: "I've been waxing and waning between excited and apprehensive. So far, the Minimed 530g has me running Barenaked Ladies lyrics through my head, but the pump should be singing to me, including the the anger and frustration to the mutual apologies." I stopped there. I may have gotten a little stuck in the symbolism.

The first Enlite sensor I put in with the Minimed trainer was surprisingly comfortable. The insertion was easy-peasy. Loading the sensor into the insertion device was adult-insecurity-proof. Hold it flat against your stomach. In the sensor goes straight down at 90 degrees after on button press. Press and hold to pull the inserter off. So simple you could do it with one hand - I found that gimmicky. Seriously, when am I going to do this one handed especially considering the cost and lifetime of a single sensor. Using two hands is not the end of the world. Pulling the needle out and having it retract into it's personal housing was a spring-loaded cool and painless. Medtronic gets my props for designing that.

One of my old gripes about MM's previous CGM sensor was that the little seashell transmitter never stayed still. The eventually started selling seashell-shaped backing tape individual of the sensors but I hadn't stuck around long enough for that. The Enlite comes with backing automatically attached to the portion under the transmitter. That along with a special overtape (to go over the sensor but not over the transmitter unless you want a second piece) helped everything stay in place. Add one more short piece of tape to hold the seashell down and the sensor was pretty secure (wayyy more than the old one). The trainer told me that all the adhesive that MM selected was pressure sensitive so holding it down for 5 or 10 seconds would help the sensor stay on longer. Of the fours sensors I've worn, only one came off early and honestly that may be my own fault for getting caught on a door way (really, who's surprised).

I was happily surprised to see that charging the transmitter wasn't as big of a deal as I made it sound in the last post. Not eight hours. More like 30 minutes between each 6 days of wear. I only spaced on that once (with the sensor that came out early) where charging the transmitter slowed me down from running out the door, but I managed to keep myself busy with other things in the meanwhile. I imagine that taking a sensor out and putting the transmitter on the charger becomes second nature after you've been wearing it long enough so no reason to fuss.

After the initial sensor placement, there's a 2 hour warm-up period after which you put in a calibration (same as Dex). For a Dexcom, you actually need to put in two readings after the warm up and I usually do two immediately (aka I use the same value twice - shocking I know). For the Enlite, you need to enter another calibration within 6 hours. You should only put in one calibration in every 30 minutes. You must calibrate once every 12 hours or the Enlite sensor stops providing data. The way that the MM algorithm works is based on weighting the last four calibrations in order to translate from ISF to blood glucose. So if one of those calibrations is sub-optimal, then your accuracy is off until you get rid of the bad value in your log.  None of this weighting nonsense exists with the Dexcom G4 system.

One of the big claims that I kept hearing over and over again is that you can calibrate the sensor whenever you want, with few exceptions. DEFINITELY a sales gimmick. For the previous MM sensor, you could only calibrate at times when your blood sugar is stable. I NEVER understood this. If I knew my blood sugar was stable, why would I be using your device? There are a ton of unreasonable assumptions: your blood sugar is stable when you wake up, when you go to bed, and before meals. Is it true for a lot of people? Sure. Does it work for me? No way. When I get up is the only real guaranteed stable point in 24 hours. After that, I'm running around like a madwoman, eating bits and pieces of healthy and unhealthy crumbs all day long, with nothing that resembles a schedule between two adjacent days. I'm in graduate school and everyone knows that college-life is not a steady well scheduled thing. I will eat ice cream before I go to bed. I will snack through my two-hour post prandials.

Different people will tell you different things. One rep told me it was okay to calibrate with one arrow. One told me never. A technical rep told me not to calibrate when I saw the sensor and meter values were far apart even when my blood sugar was stable at a high or low number. I could only calibrate when I was within a happy range. Another technical rep told me that I needed to get up and get my body moving to get my interstitial fluid (ISF) moving when that happened (to which I asked, I REALLY have to get our of bed in the middle of the night to stretch???). Coming from a Dexcom where you can ACTUALLY put in a blood sugar whenever you want, I couldn't handle this only calibrating during "stable" times especially since accurate calibration is what seriously affects sensor accuracy.

Another thing that is a little bizarre to me is the insistence that I use the Next Link Meter. Supposedly, this Bayer baby has better accuracy than other meters. I didn't notice a difference between it and my one touch mini the few times I did double fingerstick experiments. The 530g system was FDA approved with the meter, even though you can't bolus with it just transmit fingerstick values. No real complaints about the meter. The case is weird. The strips are a little harder to insert. I found myself looking down to see that the new strip hadn't registered even thought I had already splashed blood over. It is kind of nifty though that you can add blood afterwards if the sample is too small.

This accuracy issue goes right to the Low Glucose Suspend (LGS). I actually like how the LGS is designed and demonstrated. Basically, the pump turns off for 2 hours if your blood sugar is low. If you don't respond it basal insulin stays suspended and the alarm keeps hollering. There's a nice message on the display that says something along the lines of I'm a diabetic and I need help. Great for non-responsive situations. If you are responsive, you can chose to suspend the basal insulin for two hours to resume the basal activity. Let me say this again: I LOVE that this feature exists. I LOVE how simple it is to use. I LOVE the way it was designed. However, I cannot stand it when combined with bad sensor accuracy.

Every time (4 times total) I put in a new sensor I had the same problem: surprise LGS in the middle of the night when my blood sugar was fine. I verified that with finger sticks twice. I assumed the other two with good reason (::cough cough:: my Dexcom). The first time, the low alarms and LGS just kept me awake all night. The second time, the LGS went off and I slept through it, I never got the high alarm because the sensor was out of range, and I woke up high at 250ish. The third time, the LGS went off and and I slept through it, I got the high alarm as I woke up saying 186 mg/dl when my meter was saying 290ish. The fourth time, I kept getting low blood sugar and weak signal alarms, and I didn't get any sleep.

Accuracy when compared to my Dexcom was reasonable after 48 hours. Those first 48 hours ranged from atrocious to mildly irritating though. The Enlite sensor did much better on day six than day one. The Dexcom G4 sensors take about 12 to 18 hours before being a trustworthy accurate for me. However, their warm up period never quite reaches mildly irritating because I can always pop in a calibration ans see semi-immediate alterations in the blood glucose calculations. Also, an awkward comparison since the G4 sensors are good for seven days.

This brings me to my last few gripes. Sensor range. The range of a MM sensor should exceed my body. Getting a weak signal alarm when the sensor is in my left hand pocket of my jeans when my transmitter is on the right side of my stomach is asinine. There's no better way to say it. I shouldn't be getting weak signal alerts or lost sensor alerts when I'm in my bed. This is 2013. We can transmit things across countries. Bluetooth works at greater range. What kind of low grade tech are you putting into the transmitter that prevents this? Oh right, you didn't upgrade the transmitters. Just the sensors...

Alarm volume? Comparable to the Dexcom. However, I can amplify the Dexcom alarms in a low tech way (glass with coins next to my bed). I cannot sleep with my pump next to my head, because of the weak signal problems. My sheets and comforter muffled the alarms so much that I had no idea a LGS was going off til I peeled them down. Not cool. The vibration isn't all that strong either. I've had a whole lot of phantom pump alerts trying to keep an eye out for them.

Battery life? Well I guess you can say this was low because of the number of alarms. But really? 2 weeks before my first battery change is kind of sad, but I don't really know how to compare it since my Dexcom is only checking my sugar...

After the fourth sensor (and the 10th or so night of not sleeping), I decided to stick a fork in my diabetes tech experiment and ask for a return. You can't tell me I can calibrate whenever I want and then tell me I'm calibrating at inappropriate times. I also did not enjoy being treated like a child when I said it wasn't for me. I don't think medical devices should be a hard sell. My trainer put me on the verge of tears because they blamed my D-control was the problem when I blamed sensor accuracy and they almost had me believing it, which is super uncool with a condition that comes with as much of a mental burden as a physical one. I did break down on the phone with the continuing care representative a little bit. I all out bawled afterwards out of exhaustion, frustration, and high blood sugar. That said, all in all the customer service was much better than I was expecting. Lots of follow up. I know that they are people too. They get judged on who stays and who goes. I'm sure the everyone's under pressure with this new system.

So now, MM is processing the return. Two weeks minimum before everything is sorted out from the device end. No idea on how long refunding the insurance claim will take. I'm crossing my fingers that it won't be longer than mid-December so that I don't have to pay through the nose for a new pump and a new transmitter for my Dexcom because of deductibles (ironically the battery on that died this Sunday before I decided to return the MM system). What am I getting next? Still keeping my options open and doing way more research before I take the plunge again...

TL;DR
Pros :-)
Ease of sensor insertion
Adhesion of the sensor
One device
Low glucose suspend
Mehs :-|
Transmitter charging
Battery consumption
NextLink Meter
Cons :-(
CALIBRATION!!!
Sensor accuracy (and therefore low glucose suspend)
Alarm volume
Transmission range

My recommendation: Only use the system if you're comfortable with MM's CGM tech already. Otherwise Dexcom rules.

If there's anything I didn't discuss and you're curious about, leave me a comment!

The Real Kind of Climbing

I'm a fan of the "Better late than never!" attitude towards life and in that vein, here's a story from Thanksgiving.

My brief November jaunt up towards Massachusetts was filled with lots of excitement and entertainment even though the Monday before I drove up I was a mess (read: pulling an all-nighter).  I terrified the daylights out of my mom when I called her up on Tuesday morning because I couldn't find my car keys after packing up my "I look like I'm moving out for 2 weeks" luggage (turns out the couch cushions devoured them). The drive up was mostly innocuous. I only screamed at a dozen drivers on the way up, particularly in Connecticut (even after six years of living there, I have no patience for their drivers).

I was in a little bit of a hurry because I was on a mission to meet Steve! from LivingVertical!!! (yes, the exclamation points are very necessary). Scheduling is always a nightmare since I fill my schedule to the brim and he's a professional road trip-er with limitless destinations (figuratively and literally). We managed to figure out a few hours to climb a very accessible crag just south of Boston. 

The approach (aka the distance from where you park to where you climb) was the shortest and easiest I had ever seen. Usually there's at least a short hike involved that puts me a little out of breath but this was shorter, easier, and more scenic than a walk from a mall parking spot to the entrance. I arrived a little early so I scouted around the "little" rock jutting out from leaf carpeting without slipping too much. The place was perfect for some suburban climbing. Easily accessible from the highway. Lots of routes with diverse levels of difficulty  Readily usable natural anchors. Perfect in many ways.

Unfortunately, we hadn't quite planned for the lack of light (silly sun setting at 5pm) so we only manage to test one particular line and explore a little bouldering (aka climbing sans rope). I hadn't been out in the real outdoors or even in a climbing gym so I was a little stiff and holding on far too hard. Eventually I loosened up enough to make it about halfway up a route. Steve was kind enough to be patient and encouraging. Especially with the bouldering. Note, there are no rule to outdoor climbing. Up. Across. Go where the natural rock holds lead you. Just remember to be safe and to relax. Over gripping just ruins everything. The whole experience was nice except for when I feared I lost my new Dexcom receiver in the dark underbrush after only having had the gadget for about 2 weeks. Luckily, I'm just a spazzy space cadet with an over abundance of pockets to stash my essential goodies and safely located it before packed up and proceeded to storytelling by the cars.

Lessons I learned:

1. Falling is good... but having someone you trust to spot you is essential. Hopefully I'll experience more of that to get over my fear.
2. I am detail oriented over concise. Steve says "Kit" and I say "Applesauce+CGM"
3. Cleaning up after yourself. We saw some less than savory things out on the crag.
4. My compliments are not exactly complimentary...I may have told him he looked like a squirrel. At least I'm memorable, right?
5. Every little tweet, like, shout out brings warmth and joy to others. Let people know you're reading what their writing. Even if it's something small like "Love this." The interwebs are better when it's interactive.
   

The only photo I managed to get of Steve. 

If you want to see how meta the photo is, check out this.

My family's Thanksgiving dinner.

We insisted on having the neighbors over because there was no way to eat that much food.

I took leftovers that lasted for a week... 

Now, let's see if I can manage to be a little more timely with my next update of adventures...

Wordless Wednesday: I am Diabetes Punching Bag

Can you say bad infusion site?

Breaks and Vacations

I just finished my last exam of the semester today. Cell biology will never haunt me again unless I have to retake it (let's all cross our fingers for me!). Technically, I have the next four weeks off. In reality, I should spend some large portion of that time writing grant proposals, reading research papers, figuring out where I want to go in the future, and the steps I need to take to get there.

School vacations always threw me off. Either I'd want to do nothing but relax and then get bored of being a slug only to pick up a tutoring job or research position, or I'd have grandiose plans to read novels or build things that I couldn't during the semester and instead end up sleeping my time away.

I'm looking forward to seeing friends and family that I miss like crazy. To rock climbing with my old crew at least once. To sleeping for eight hours guilt free. To getting some exercise regularly on purpose. Oh yeah, and seeing my endocrinologist to check up on my diabetes, which makes me think of another kind of vacation...

For 10 of the 14 years I've had diabetes, I've never taken a purposeful break from my pump. Yes, I've squeezed in a few dozen shots of insulin when my pumps broken (which I think has only happened 3 or 4 times). And yes, I've occasionally taken shots to tide me over between site changes. With my recent adventures in rotating infusion sites (fairly unsuccessfully, I think), I've been thinking more about just putting my pump away in a drawer for a while. But the thought of that scares me, just a little.

My schedule is... well kind of a nightmare. It's inconsistent. Everyday is different just by the virtue of my classes and visiting lecturers and the nature of research. I've gotten used to being able to dial up or down my basal rates for stress or exercise and extend a bolus for crazy food combinations. I always thought being on shots required more... discipline than I have. Take a shot of long acting twice a day everyday at the same time. Take multiple shots of short acting for all the food consumed for meals and snacks. Which makes me wonder about how much I'd like popping out a pen or a shot when I take just one measely unit for those lectures with free snacks outside where I grab a tiny plate of melon, even if I just ate lunch or dinner is in an hour. It's easy when it's a button. Not so easy when it's a shot.

My mother would never understand why I'd ever take a break. She thinks that my insulin pump is the greatest thing since sliced bread and has always advocated giving pumps to kids even when they were hesitant to give them to teenagers. But I've been making my own decisions about diabetes for a few years now. That shouldn't really be a factor but it's bouncing through my head.

Just cause I'm taking a break from my pump (hypothetically) wouldn't mean I'm taking a break from Eggy (my CGM) so any fear of lows or highs from being on multiple daily injections should be nonexistent. Right?

Maybe I'm over thinking this, and it's just something I have to try. Or maybe I've been stuck with my pump for so long that I'm too comfortable to let go.

Vampire Infusion Sets

Yes, vampires can be cool. Vampire infusion sets are definitively not. If you're not fond of blood, then I don't know how we can be friends (not really, because I have all sorts of friends but read on). Mostly because little finger pricks for blood drops are involved between 4-15 (it feels like a billion most days) times a day for me. I have to warn you that if you get faint at the sight of gross things like blood, you DON'T want to scroll down (although even if you were, you would because I just told you not to).

I posted a few weeks ago about some issues rotating sites with my hips. Apparently, the same is true with my thighs. To be honest, I'm just having all sorts of new issues with infusion sites that make me want to go back to just using my stomach again. I'm fairly certain that the last site I pulled out was infected from the gooey stuff that oozed out of it and the raised . I'm used to seeing some liquid (I can only assume it's insulin) come back out when I pull out an old site (actually it happens sometimes with regular needles too). Most of the time, I don't account for it unless my blood sugar is rising/high.

What I've noticed is that any of my bloody (no, no like the English mean it) infusion sites usually take 6-24 hours and then they're fine. No more blood (not in the cannula, not on my clothes). Just the gross outline of it on the little gauze adhesive that surrounds it (see any of the pictures). This is what keeps me from tearing them out and putting in a new one. Because I don't think they're is ever a guarantee that it won't bleed (but I think its cause I dread putting in new ones). And it's not like a stab myself with one and it's gushing blood (cause if there were I might even do a glucose test with it for fun). It usually takes an hour before any blood starts showing and three before there's a weird pool of gunk on my infusion site.

I know that everyone says to pull out a set that is overly painful or bleeding. I can't say that they hurt. And to be honest, I HATE wasting perfectly good supplies. So is it worth it? An hour or two or twelve of a little uncertainty with my infusion set in exchange for a little less pain? I do it. I don't recommend it. The only thing I can recommend is trying to change sets in the morning or the middle of the day so you can push more insulin, because waking up at 262 mg/dl is not the way to start off any day. If you have any feedback, I'd love to hear from you. In the meantime, here are the gross pictures I mentioned (and no, they haven't been enhanced for total gross-ness):

Fresh and bloody infusion site after 24 hours

Bloody site after being removed

Bad Sites

I feel like putting in an infusion site nowadays is like digging for gold: Random and nonsensical.

A few weeks ago, my CDE and I discussed potential alternates from my stomach. After having an insulin pump for about a decade (2 upgrades later, that seems crazy) and recently acquiring a CGM that actually works for me, I feel like I need to give my tummy a break. There are little white scars everywhere on my brown skin that make me feel like I'm artificially giving myself reverse freckles.

Anyway, now the outside edges of my tummy (aka my lovehandles [eww]) are reserved for the Dexcom and the infusion sets are wandering. I've been comfortable enough to try the back side of my hips. I was afraid mostly because I didn't think I was flexible to comfortably get the site in with the sil-serter (makes me think of soft serve ice cream for some reason [#takethatwendell anyone?]). It's awkward but I've gotten to work for me with one very large caveat.

I can only use my left hip. Every site I've tried (I'm up to 4) on my right hip has ended up being a vampire infusion set. After putting one in that seemed fine for the 10 minutes I was watching it, I went shopping today and found the following image awaiting for me in the dressing room mirror.

It's a little hard to tell, but basically that's a lot of blood that's crusting around somewhere where there should be any. That's definitely an infusion site fail. The little dot to the left of it is one of the earlier ones that bled out and left my blood sugar running high for about 8 hours overnight (reasons not to change infusion sites before bed). I thought human bodies were supposed to be relatively symmetrical. I just want it to work. I hate having to change them early. I also don't want to be worrying about not hitting a vessel in addition to worrying about not hitting scar tissue. Some part of my body has to play nice, right?