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!

Bullet Points: Catching Up

So it's been a little more than a month since I've last posted and way too much stuff has happened. I promise to come back and write real posts about some of this stuff but for now, all you get is the abbreviated version:

• I finished my first year of doctoral classes.
• Many, many all nighters
• May have given myself a stomach ulcer (not really)
• I love seeing old friends.
• Somethings never change
• Especially in NYC
• Time flies!
• A neighbor backed into my rear passenger side door.
• No human damage
• Car still drives
• Mostly other driver's fault (Insurance split it 80%-20%)
• My doctors suspect I have developed Diabetes Peripheral Neuropathy (DPN).
• Almost 15 years complication free
• Intermittent numbness in my feet
• Diverging opinions between two primary care physicians
• Started taking a B-complex vitamin
• Still investigating my next steps
• I spent 12 hours in the ER.
• Somehow double bolused too much insulin when out with friends
• Extreme disorientation
• Blood sugar of 28 mg/dl & unresponsive for 30 minutes while in the ER
• My friends are awesome at taking care of me

I'm sure there's more stuff but those are the things that are glaring in my mind. Oh yea, in case you missed it, I was Fan of the Week over at the Blue Heel Society. Check them out, because they're awesome.

Not Coordinated or Together (or a Good Example)

I don't pretend to be a good example. Or a maker of good decisions.

Most days, I carry around a massive black backpack. One filled with my laptop and folders for school and all the fun diabetes supplies I carry around. In addition to my little tupperware case of medical swag and glucometer, you can usually find a big bottle of glucose tabs, Clif bars, a Nalgene water bottle, and an emergency Diet Coke can (because you never know when you'll need caffeine).

For a variety of reasons, I've been experimenting with downsizing. Instead of bringing my laptop with me (which is the main reason for the humongous backpack), I managed to bring two folders, my d-tupperware, a snack, a tube of glucose tabs, my tester, and my water bottle on the very first day of classes this semester. But I've been going back and forth between my big black backpack and my slim blue tote.

Monday was a crazy (read: super unprepared) mad rush to school. I *almost* forgot about my weekly seminar. I stuck my folders in my tote with my tester, d-case, and a fast snack, and then, I dashed to my car. As soon as I pulled out my notebook during the seminar, I realized I forgot a pen (not a girl scout without my big prepared bad with 9 of everything). No biggie. Just borrowed one from a friend. During my 20 minute break between the two classes, I quickly ran up to the lab to straighten out a meeting I had missed cause of the seminar. Checked Eggster to see a nice flat line around 90. No worries...

Until the ominous triple buzz set in 5 minutes into my second class. And Eggy says? 64 mg/dl. No prob. Just need some sugar. But since I grabbed the slim tote, no sugar in site. Just mozerella sticks and carrots. Instead of saying something or just taking a few minutes to hunt down some sugar, I sat there. I suspended my pump. Devoured those cheese sticks as discretely as I could. Kept pressing the button on my Eggy to prevent the LOW screeching. As soon as class was over, I ran to my car an chomped down on four glucose tabs...

But I had to hurry for my first gym class of the semester (or ever...). My roommates and I signed up for this flexible exercise series at the school gym. I want more structure (read: an external motivator) in my sweatabetes. And I'm always willing to try something new. So I needed to dart to the gym for my very first Zumba class. Still low though. And it's raining. But I'm very functional. The gym is only a 1 minute away by car. 10 minutes later. Still low. More glucose tabs. Run in and change. Still low. Find the room. Only at 68 according to Eggy. But I'm exercising anyway.

I know it's not healthy. But I wasn't doing this for my diabetes. I was doing this for me. Because if I skipped number 1, I'd skip the next one. And the next one. I don't want to sit on the sidelines. And a little low isn't going to stop me. At some point the glucose tabs kicked in. My pump was still on suspend and I turned it back on once I was past 100 mg/dl. I peaked at 130 and then slowly came down with the exercise. The rest of the night was filled with little glasses of juice. But I survived.

I spent over an hour in a hypoglycemic state (under 70 mg/dl according to Eggy) and an hour in in severe hypoglycemic state (under 55 mg/dl according to Eggy). And I'm lucky nothing happened. But now, I'm taping a tube of glucose tabs into every bag I own for next time.

(By the by, I'm not coordinated. But I survived Zumba. Kept up pretty well and only screwed up a fourth of the moves...I think. Someone needs to teach me how to pick up my feet instead of planting them. Oh and need new sneakers. STAT! The only thing that hurt when I was done was my ego and my feet.)

Trust Yourself

I saw my endocrinologist just three days before the beginning of the new year.

In the hustle and bustle of the last few weeks of my first semester, I may have let my diabetes care slide a little bit (read: like WHOA). Something about the stress of finals and staying up all night leads to intermittent to non-existent finger sticks along with copious amounts of diet coke and nothing but take out dinners. There were definitely days when I only checked what my blood sugar twice and saw numbers floating in the 200s and 300s (if ever you were curious, stress does make your blood sugar rise). I leaned heavily on my Egg-shaped friend and took somewhat random correction boluses. This routine disturbingly echoes my diabetes managements techniques as an undergraduate, except I didn't have a continuous monitor to keep an eye on my waxing and waning sugar levels.

Between celebrating that school was over, driving up and down the northeast, and trying to unwind, I completely forgot about my appointment. Somewhere in the back of my head, I knew there was some reason I hadn't made any plans for travelling or adventuring with friends for that Thursday. When the receptionist called, I mumbled my affirmation that I would be there. A mental image of a mostly empty spreadsheet appeared in my mind instantaneously. I didn't even pause before thinking my HbA1c would be somewhere between 7 and 9. The worry and fret weren't far behind.

I always want to be doing my best. If I can walk into my doctor's office knowing I've been trying, I don't have anything to fear. I can hold my head up high and answer any doc's questions. But this appointment was different. All I had to show were a bunch of excuses. Life gets in the way sometimes, but my good health gives me the ability to do more.

All bundled up, I walked into the office and handed the receptionist my dismal looking log. After a few minutes of waiting and watching dLife clips (love seeing people I "know" and know of on television), the nurse called me in. We went through the weight and blood pressure routine while exchanging niceties. She laughed when I told her I was a professional pin-cushion as she checked my blood sugar and loaded the on-site HbA1c tester. My doctor walked in a little hurried looking while the tester was still counting down. We chatted a bit and then she said something about not wanting to make any changes to my basal rates since she trusted my abilities to do so, she didn't have a log to look at, and my HbA1c hadn't changed much. I was so taken aback that I didn't notice or correct her about the log. In the 4 months at school and the crazy stress of finals, my HbA1c had only risen 0.2 points, which is well within the error range of those machines. She wished me well after my brief verbal and physical examination and was on her way out after before the full realization of that sunk in.

I don't usually make New Year's resolutions, because they are very rarely kept. This year, however, I'm very determined to make and keep a very different resolution. Do I want to lose weight? Yea, but that can be tackled later. Right now, all I want to do is trust myself more. I want to trust my behavior. I want to trust that I'm doing my best. I want to trust and have faith for better results than the rational side of me would expect. Because stressing and worrying about what's coming isn't healthy for anyone. My resolution for 2012 is to believe in me, to believe in good things, and to believe in optimistic outcomes.

Vacations, Bad Luck, & Emergency Baking

It's weeks like these that make me feel like Diabetes isn't going to kill me. Stress on the other hand...

I apologize for the impromptu hiatus in blog posts. I'm a little disappointed for not making a goal I set to post regularly. Honestly, I'm burnt out on responsibilities at the moment. I needed to take a real break from everything for a little while, which was amazing while that feeling lasted (and unfortunately it was extremely short lived).

So what have I been doing? I took the week after Christmas to sleep out the exhaustion from my first semester and the crazy holiday/semester-end celebrations. There was quite a bit of driving around. I think I spent 14 hrs in a car over a 48 hr span of time. Every day that week began with many hours of sleep and a few enjoyable hours on the couch watching bad television (because really, it's the only kind).

Unluckily, my laptop crashed the day after I returned to New Jersey after only functioning for about 45 minutes. It was a serious blue screen of death followed by a "I won't boot regardless of how nicely you ask me" tantrum. Two system restores, many phone calls to HP tech repair, and 48 hours later my laptop was mildly functional. I just recently (as in the last few hours) installed Windows 7 and restored its functionality (read: it's no longer a very expensive paperweight).

This past Saturday, I managed to have my cell phone and One Touch Ultralink meter lost (and probably now stolen) in a public restroom. That lead to a very unpleasant 24 hours where I was relying very heavily on my continuous glucose monitor (EGGY TO THE RESCUE!). Needless to say, I have had multiple moments of undue stress, unclear thinking, and reckless panic. I still haven't slept to make up for all of it.

It proved to be a fairly (but not insanely) expensive mistake. I bought a new phone from AT&T and a One Touch mini from my favorite pharmacy. To try and unwind a little, I googled a quick recipe for my favorite (and mildly famous) chocolate chip cheesecake cookies since all my recipes are hiding in the backed up files on my external hard drive somewhere. Whipped up a batch as speedily as I could. I'm all sorts of discombobulated still. But indeed a delivered pizza and baked goods do ease large quantities of stress, in case you thought otherwise.

I'm sure you'll see upcoming posts that were intended for well before their actual post date. I hope they haven't hit their expiration dates.

It's Been a While...

So I haven't written in a while. Not really for a lack of ideas or thoughts (cause if you ask, I have exactly 10 or so rolling around my head at any given moment), but more so a lack of time at my laptop, energy, and organization. Because 2 or 3 sentences makes a tweet and not a blog. And while I love bullet points, they don't help my writing skills blossom. But alas, my mind just breaks down from all the clutter rolling around in there.

I managed to pull out not just ONE, but TWO infusion sets placed on my thighs within exactly 3 hours of each other last week. I think there was something wrong with the adhesive after they ventured into the great outdoors with me for a night. But considering I typically "accidentally" tear out a site once every 6 months, I was quite angry cause I despise changing my infusion sites. Plus, it screws up my rotation schedules for "landing zones".

Another first for me (today in fact) was the first time I misplaced my insulin. I'm on a pump. I change my site & reservoir every 3/4 days, but I always keep my medical bag packed especially when I'm travelling (read DRIVING everywhere). I was panicking after I noticed that my Novolog was missing for the bag when my reservoir was running on EMPTY just after eating a large dinner at 8pm at my parents. I guess that as I was hectically putting in extra infusion sets in the bag, it rolled out. Insulin 5 hours aways doesn't help me now. Absent-vial-syndrome hasn't EVER happened to me before. Thankfully, the CVS by my parents is open til 10pm and they had enough in stock to fill my prescriptions. Crisis averted.

I'm on the hunt for a cool diabetes shirt that says "Even though I don't look sick, I still deserve a cure for diabetes" preferably before the Non-Communincable Disease Summit in NYC (I'm going and you should too! More info here!). Anyone know someone who sells one already? Otherwise, I'm totally hitting up http://diabetees.spreadshirt.com/ to make me one (because I really want to order half their website already). Anyone else interested?

Sleeping... Or So I Hoped

It's funny for me to think about when I was in college and managed to fall asleep in all the strangest places at all the strangest times. I had (have?) a habit of running myself ragged, doing everything I possibly could, before my body would just decide naptime was required and I would be out like a light. (bonus story at the end!)

To this day, I'm still a pretty heavy sleeper. Except when the Diabetes Dragon exacts it's toll.

I remember being a teenager and having my endocrinologist ask me if I ever woke up in the middle of the night for water or to use the bathroom. Most often the answer was no. Thinking about it now, I always wondered why they never asked, "Do you ever wake up in a sweat?" or "Do you ever just sit up in bed?" Living with diabetes brings about a lot of good things like healthier eating and more attention to lifestyle choices, but with sleep, I wish I didn't have it. Luckily for me, I always woke up anxious or trembling when my blood sugar was dropping (usually at the 40s or 50s, but at least I'd know) [easily my mom's biggest fear]. In terms of high readings, most often I wake up groggy and dehydrated when I get to about 250 mg/dl.

The reason I bring this up today is because today I experienced random awakeness for the first time that wasn't D related. No cold sweats. No shaking. No anxiety. No dying for a liter of water. Just AWAKE. My body never ceases to amaze me. Why am I awake before 10am in the middle of my vacation? Because I think I've trained myself on 6 to 8 hours of sleep. I've been working on getting more sleep all summer and now it comes full circle.

I was overcome with this wave of exhaustion at about 11pm last night. Passed out on the couch kind of exhaustion. I woke up to 5am on my cell phone. I don't see 5am often for a reason. We're not friends. I understand doing this once school starts, but really, I'm trying to savor the last few weeks of freedom from craziness. On the upside, the internet always has something for me to do to keep occupied. On the downside, I really just want to close my eyes for a few more minutes of zzzs and can't.

Bonus story: When I was a sophomore, I went over to my friend's apartment to study for an organic chemistry exam we had coming up. We were sitting on the couch and flipping through our books, when her roommate came out of her room to ask my friend something quickly. I think they were talking for maybe 2 minutes. My friend turned back to me and I was out like a light right there on the couch next to her with my textbook in my lap. Woke up 2 hours later, very very confused.

Parents Just Don't Understand

Patience is the key when living at home. Unfortunately, it's been less than a week and my patience is already wearing thin. My mom wants me to start organizing stuff in the house and chucking stuff. I am cute and smart, but I am not a minimalist. I'm their kid. I like my stuff. She proceeded to wander around my bedroom for 5 minutes poking and prodding the boxes. "Why did you buy a yoga mat? I have one downstairs." I know I could have parents who don't care, but right now, I'd like them to just be a little more understanding instead of inquisitive. Stress doesn't affect my blood sugar or mood at all, right? (exit sarcasm)

Today, I managed to get up and convince myself to eat some light breakfast (greek yogurt and a banana). I followed that up with some phone calls and apartment hunting online. Broke a sweat with 30 minutes on the Wii after confirming that the result of the number on the bathroom scale wasn't my imagination (because technology never lies). More water instead of soda or juice [Day 2]. I nibbled on a veggie burger between some slices of cabbage and managed to get only a smidge of the condiments on my pjs.

Mowed the lawn for my dad (aka he watched while I did most of it instead of going to the gym as he originally intended). Emptied the dishwasher. Watched alot of crappy tv. I can't seem to find anything to motivate me to explore NH especially when I have to wear an extra layer for warmth.

All in all, the monitoring and substituting food seems to be sticking and helping. Dexcom hasn't been alarming high all day and it's actually at an appropriate number before I'm going to bed. I've managed to get between 7 and 9 hours of sleep for the past 4 days. Now to try a regular and preferably normal sleep schedule. Time to close the laptop and catch some zzzs.