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!

Before the Return of the Shell

Since I've been on an insulin pump for several years now, I have been lucky enough to see some of the diabetes technology devlop. All in all, I think (because my memory is too fuzzy to really remember) I've had at least 3 different Medtronic Minimed (MM) pumps. The latest and greatest 530g just came out as the successor to the Revel. I never got to experience the Revel first hand but one of the improved features was predicted alerts for the continuous glucose monitoring (CGM). I'm going straight from the MM Paradigm to the MM 530g, who's updated features included the linked CGM that allowed you to see your bloodsugar on the screen of your pump. If I'm wrong about this, I'm sure someone out in the DOC interwebs (because we're usually brighter than the average bears) will correct me. The funny thing about this whole experience is that while the Paradigm had the CGM ability, I only used it a handful of times before being so frustrated that I nearly pretended it never existed in the first place (which is saying quite a bit for someone who has the patience of an educator).

Regular readers will know that I've grown very attached to my Decom CGM that I lovingly call Eggy. I switched from MM to Dexcom two years ago because of that silly shell shaped transmitter. The transmitter would never stay put even with the assistance of every type of tape under the sun (that I could get my hands on at the time). The sensors were also crazy innacurate, and I could never get the calibration to work with my insane college schedule (really, who is stable for two hours when there are hormones and caffiene raging through you?). I held out for 4 months before deciding not to order another 3 month supply.

One of the other major things that bothered me was that the transmitter need to be recharged for EIGHT hours once a week. Add on the two hour calibration for every new sensor and replacing a sensor every three days. There goes 12 hours of glucose monitoring for your week.

In my mind, I expected that Minimed would change this as the technology improved, because this continuous monitoring thing was too new still. Or at least realize that they should send people two transmitters for the investment. That kind of logic is entirely false apparently. Even with a newer sensor that is FDA approved for SIX days of wear (the Enlite), you still lose eight hours of calibrating (ten if you add the two hours of calibration). This is all extremely perplexing when you add in the benefits of CGM plus low glucose suspend. If I chose those ten hours to be overnight while I'm sleeping, there goes the necessity of that feature. If I chose those ten hours to be during the day, I lose the ability to track my meal bolusing. I know that we're still miles away from "true" continuous monotoring but losing eight hours to charging the shell shaped transmitter seems asinine especially when compared to Dexcom system. All you lose is two hours a week for new sensor calibration if your efficent. Switching over has been a hard sell, my friends. But for aomeone who's struggling with perpetual hypoglycemia, I couldn't say no to a system with low glucose suspend and the timing for an upgrade just worked out.

I'm being adventurous and faithful to a company that  has served me for over a decade. I'm also trying to keep an open mind. Maybe it won't be as bad as last time. My CGM training is tomorrow afternoon so hopefully I can throw in a new sensor before bed. I will try the dual Dexcom and Enlite for a little while since I've got the mother load of Dexcom sensors left...

If you have any specific questions about the system, let me know in the comments!

Running High

Not literally. Only in the blood sugar sense. Waking up high should not be the norm. It's making me grumpy.

Two things I need to do: Basal testing and some light exercising.

And in all that extra free time I have: Postprandials to test my insulin to carb ratios and learning how to relax.

October Bits and Bytes

I've been hiding in the real world diabetes community and my twitter feed and blogging reflects that with silence. So in lieu of skipping all the fun stuff, here's some of the major highlights:

Today:
I volunteered at a JDRF Walk for a Cure on the Jersey Shore. My friend and I were in charge of signing up Government Relations Advocates. I got 3 actual signups but I spoke to several dozen people who were already advocates. Warmed my heart. Only down side to the day has been the perpetual gluco-coaster I've been riding. My bloodsugar hasn't been this high in a while. I think someone swapped my insulin for water. I may also blame the bagel I ate (avoiding carbs is so difficult with free food)
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Late September:
Since I've hit 4 years with my Paradigm 722, I got a call a few weeks ago about upgrading. A week later, I was notified about the latest FDA approval for the Minimed 530G (aka the fancy closer to artificial pancreas pump). I'm a little skeptical but trying to be open minded. So far (before actually having it on my doorstep), my only big complaint is that Minimed's CGM transmitter is still shaped like a seashell. I've been spoiled by the relatively well adherence of my Dexcom sensors, but maybe this time I'll figure out some D-ninja skills for taping it down. The ETA for my new pump is another week or two.
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Late September:
I lost my Dexcom CGM receiver, Eggy, on campus one night. After retracing my steps, inspecting the lecture hall, and tearing apart every possible spot, I dishearteningly gave into his permanent disappearance. I'm still convinced he's stealthily hiding in my car or room, but I called Dexcom up to have them send me a new receiver.  I have enough sensors in stock that it was silly not to follow through with that option. Now that I may be transitioning to a MM CGM, I feel EVEN more silly. Oh well.
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Late August:
I'm not in love with my new doctor but I don't have any reason to be offended by her. She's very matter-of-factual. I was a little turned off by meeting/reviewing my history with a med student before I met her but that's the blessing/curse of teaching hospitals. I love helping students, but for a doctor I'm going to see 2-3 times a year, I wish she had built some of a rapport with me before inviting a student in. We discussed stuff. She filled my prescriptions. Very transactional. We'll see what happens in 6 months.

The Hunt for Red October?

Or in my case a new diabetes doctor.

I'm a little overdue. I haven't seen my endocrinologist since December and usually only see her every 6 months. My spidey senses told me something was up at my last appointment when the receptionist told me that she couldn't gauge their schedule out 6 months in advance (usually that's how specialist scheduling works - maaaaaany months in advance) and said they'd call me when they could make me an appointment. I officially found out in March that she was leaving the practice for dustier pastures (Google tells me she moved to Arizona).

Losing a doctor that you have a good rapport with is akin to getting a giant tear in your favorite pair of jeans (I love the idea of shopping but I hate trying on clothes). Nothing fits. No one understands the system you had. The method you loved. The relationship with all the stories. Small talk that wasn't so small. The fact that the relationship was perfectly worn in so there's no more breaking in and testing out to do and very few surprise reactions.

A major part of the difficulty in finding a new doctor is even getting your foot in the door (including ascertaining if they are covered in your insurance plan). You would think it would be pretty simple in a relatively metropolitan area with an abundance of doctors and hospitals in the vicinity of a walk down the block. But no. "We're not accepting new patients at this time." - Can you tell me when you will be? Why can't you put that on your menu of choices between Receptionist and Prescription Refills so I don't have to wait on hold for 30 minutes to find that out?

2-3 hours of phone calls later, I found myself an appointment that wasn't scheduled for October or November but luckily in the first week of August. I'm actually seeing a nurse practioner instead of an actual Endo but that's just the luck of the draw. The only thing that makes me feel better is that it's supposedly a diabetes care clinic that has a highly recommended doctor. I know the chance of me seeing her are slim, but here's to hoping that the talent/skill/knowledge rubs off so that I find a doc who is understanding and a team player.

Refresh

Sometimes I wish I could hit refresh on my diabetes care like I hit refresh on my browser (I'm a Chrome kid people if you care). Broken link. Staring at old images. That silly java applet broke. Refresh to the rescue. Broken testers? Staring at unchanging number? That silly infusion site that got clogged? No such solution to this case. But!

I like to think of the Diabetes Online Community (DOC for short- we're working on the blue suits and sunglasses like the FBI but snazzier) as my refresh button. I've been hiding in the real world unfortunately and at best lurking in the background. But that I can hit refresh on my blog and my twitter account. Right?

Normal, Except...

"How is the diabetes?"

"How is your sugar?"

"How is your health?"

All these questions come with expectations. The expected answer is fine, good, and normal. I've still got a pulse and I'm still kicking.

Unfortunately, a little piece of me swells with frustration and sighs every time I get asked these questions. The answers get complicated. There's sometimes. There's storytelling. There are these exceptions to those expectations. When I care to advocate and educate, the answer is anything but brief.

"But it's mostly normal right?"

Normal went out the door a long time ago and got replaced by this new normal of aberrant irregularities. what drives me nuts is people who ask these questions and know all the stories and exceptions. The daily grind of diabetes is everything but consistent.

Short Bits: Sugar Tales

Woke up to Eggy alarming at 3 am. Rustled a bottle of tabs from underneath my bed from a recent trip to CVS. Thoroughly chewed 3 and fell asleep with the fourth one just chilling on my tongue. Unwittingly fell asleep. I woke up 10 minutes later with a horribly painful burning sensation in my sinuses. I stayed awake for another 30 minutes. New method to remember to test after 15 minutes? I don't recommend trying this at home.

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Splurged and bought some of the crazy cool (and somewhat trendy but who I am I to judge?) designer Glucolift Glucose Tabs on Amazon. I was surprised at how much more chewing was required for consumption. I never thought I'd miss the chalky dissolve-on-contact texture of ubiquitous pharmacy brand tabs. However, they definitely do taste more delicious. More like a treat to use these for treating a low which is not necessarily a good thing. I kind of like gross things to treat lows to persuade me to avoid them but maybe I'm a little masochistic like that.

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One Filled Twizzler is too much sugar to treat a low, but half of one is just right. That's why I had a bag of stale stuffed Twizzlers on my night stand for about 2 weeks. They're cheaper than juice boxes...

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I've gotten worse about carrying sugar sources around, which has led to more creative ways of treating lows (aka the random sweet things hiding in my cubicle). I popped 1/4th of a small box of candy hearts in my mouth at work. When eating those endearing little organ shaped sugar cubes, know that they are not as soft as they should be. They're more like marbles. Sarcastic hardened hearts. Especially if you try to talk and chew them at the sane time...I did. Twice. Remember to consume these one at a time.

Please Sir (or Madam)

So many stories to share so little time. Instead of sharing any one of the many wacky diabetes (and non-diabetes) related misadventures I've encountered recently, I wanted to mention an important initiative of the Diabetes Online Community (and therefore something important to me!):

The idea is simple. Spare just one rose from the dozen you were planning on buying for Valentine's Day. Take whatever you would have spent (a dime, a dollar, a dozen dollars) on that one rose and donate it to the International Diabetes Foundation's Life for a Child Program.

Spare a little for a cause that can turn a dollar into so much more.

You hear similar slogans often and wonder how does just one dollar change someone's life. A bottle of juice at my local gas station or grocery store costs more than just one dollar. A single test strip for the a very popular brand of glucose meters (including the one I use) cost more than just one dollar. This isn't a story about what we can't do.

What just one dollar can do is expanded when you think of places not so fortunate as where I live. And when you pool all those dollars from all the fortunate people. I'm asking for insulin, glucose monitoring supplies, and doctors appointments for someone like me. Someone who wasn't fortunate enough to live in a place with access to medical care and supplies. Someone who is dying (faster than the rest of us) because they can't get access to the same resources that I take for granted on a daily basis. Being a diabetic is expensive in America. Being a diabetic is a death sentence across the globe.

Let's help stop that! Let's give a little to do a lot. Let's give someone a shot (literally and figuratively)!

 http://bit.ly/SpareRoseSaveChild

"This Valentine’s Day, we can both show our affection for loved ones at home and give a little help to those we have some much in common with around the world. It is a simple, caring, but life-changing message." - Kerri Sparling, Kelly Close, Jeff Hitchcock, Bennet Dunlap, Adam Brown, & Manny Hernandez

To read what everyone else is saying about "Spare a Rose, Save a Child", check out http://diabetesadvocates.org/c/spare-a-rose-save-a-child/ or #sparearose!

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...