What Is That Thing?

On my recent vacation in Las Vegas I wore tank tops most of the week, which meant my continuous glucose monitor (CGM) was in full view on the back of my right arm.  2 people asked what it was, a whole lot of others tried not to get caught staring.  I notice the same thing at the Y when I’m on a treadmill; people are curious but uncomfortable asking, and throw side glances while they walk or run.  Not everyone will feel the same as I do, but my advice is this – if you see someone wearing a medical doohickey they’ll probably welcome your questions.  If I wasn’t OK with you seeing it I’d put it somewhere else or wear longer sleeves.  And while I’ll happily give you a quick lesson on the fun toy stuck to me, I promise not to bore you with a 10 minute preachy spiel.

For those who didn't see it when this picture from Vegas was on Facebook, here's the highly noticeable gizmo on my arm (and my terrible posture).  We'd stopped for a few minutes to watch the 4th quarter of the Michigan/Wisconsin game and my friend took the picture while humoring me with a game she didn't care about.  If you look close enough you can see the fireworks sticker I added to the transmitter from Pump Peelz.  

Anyway, it’s been almost 4 months since I started wearing my CGM, so I thought I'd give an update on how things are going.  As a reminder, the CGM is a device with a tiny wire inserted under my skin connected to a transmitter that provides glucose readings every 5 minutes.  I get those readings on my iPhone and 3 friends also get those readings on their phones in real time.

My overall thought?  I love it.  One of my favorite parts is being able to watch my sugar while I’m at the gym.  On one hand it’s just cool to watch the number drop as I walk.  Typically after about 20 minutes things start trending down, so it doesn’t take long.  More importantly, it tells me when my sugar is starting to get too low.  That lets me throw back some glucose without missing a beat and without worrying about the potential for some kind of catastrophic flight off the end of a treadmill if I get way too low.  Though yes, I know some of you would pay good money for that video.  Not happening!

The biggest minus of my CGM is that sometimes it’s really wrong.  An alarm on my phone goes off for any glucose reading under 55.  Four times recently a transmitter has decided I was around 50 in the middle of the night, setting off that alarm on my phone and my friends’.  That alarm is a big part of why I wanted a CGM in the first place, but more than once I’ve gotten out of bed to check manually and found my sugar was a perfectly healthy 100.  Thanks for that, Dex.  Nobody really wanted to sleep through the night anyway!  Why are the readings wrong?  Sometimes because it's time for a new site and I need to move the transmitter to somewhere else on my body.  Technically you’re supposed to move it every 7 days, though like most people I stretch that as long as I can if it’s still working and is reasonably well stuck to my skin.  Other times readings get screwed up or even temporarily cut off if I’m laying on the body part the transmitter’s in.  Since I don’t lie just in one spot all night it’s kind of hard to avoid that in my sleep.  And like everything else with T1, sometimes it’s wrong because the thing just glitches.  That’s all I can figure out, anyway.  If I drop from 90 to 50 in 5 minutes, I label that a glitch.  I don’t think that kind of dramatic change has been right yet.

Accurate or not, those low alarms in the middle of the night don’t just go off at my house.  That’s both a plus and a minus.  There are 3 people who have been willing to follow my CGM data and that’s a big deal to me.  My biggest goal with getting this was safety, and I’ve asked these friends to be my back up when I may not be able to take care of myself.  But that also means waking them up!  There have been a couple of times already where I’ve needed an adjustment to my insulin dose or my body seems to be a bit out of whack and I wind up going low multiple nights in a row.  That means we all wake up, I text them that I’m OK, and we all try to go back to sleep.  Not a big deal in the grand scheme of things, but I feel guilty when it happens.  More than once I’ve eaten some glucose or M&Ms because it looked like I was dropping and I wanted to make sure I didn’t wake anyone up.  I realized just recently though that I’m the only one of the four of us who hasn’t slept through any of the low alerts yet.  Yet.  Good thing we can all back each other up. J

Another annoyance with the Dexcom is keeping it on me.  While there’s a wire under my skin, the whole operation is kept together by adhesive that glues the CGM to the surface.  I’ve struggled with this part and haven’t found the ideal solution.  My record is now 26 days, for that site on my right arm that went skydiving in Vegas.  There’s no way to predict how well it go, and several sites lately have barely made it through the 7 days the company promises.  I’m working my way through suggestions I’ve found online (like the colorful and fun Grif Grips!) , and my next step is going to be trying to put Skin-Tac adhesive on my arm before I stick the sensor down.  After that I’m aiming for kinesio tape because I’ve heard some people have luck with using that around the edges.

As I write all this down I realize that I’ve listed a bunch of negatives that might contradict me declaring my love for this gadget.  Besides stalking my own sugar on the treadmill, one of the big advantages is keeping tighter control of my health.  I saw my endo a couple of weeks ago and was hoping for an A1c of 5.7.  I wound up hitting 5.6 and tied my all time low.  In non-T1 adults that result is considered non-diabetic.  So on average, I'm doing a decent job playing the role of my pancreas.  I can react faster to changes in my sugar now and that helps me prevent some highs and resolve others sooner than I’d know about them otherwise.  A lower A1c means I’m pulling off tighter management of my glucose and hopefully reducing my risk of complications from T1D.  Doing that with a CGM that warns me when I’m low means doing it as safely as I can, so I’m willing to accept a few false alarms.  My doctor was so pleased with my trend over the last 3 months that he joked about framing the graph I printed for him, and he cut me down to only 2 appointments a year instead of the 4 visits most T1s have.  That's a pretty good place to be!

The End of the World?

“It’s the End of the World as We Know It” is from one of my all time favorite bands, R.E.M.  When I was diagnosed with Type 1 I had an R.E.M. CD in my car with that song and I was playing it frequently.  Every time the song played I wound up in tears.  I can’t tell you how long it continued, I don’t remember.  At least for a few weeks and probably longer, and I never discussed it with anyone before now.  I felt like it was the end of the world because I was terrified about what my new disease meant and what was coming.  There are plenty of things to be worried about!  It takes some time to come to terms with them all.  Sometimes I’m still not sure I have, but I keep trying.

On the day my endocrinologist gave me that first shot of insulin, I told the friend who was with me that it meant I would die early.  I held off on crying until after we made it to the parking lot (victory!), but then I lost it.  I didn’t know what diabetes meant but I was pretty sure it involved a shorter lifespan.  The reality is that it might and it might not.  The most recent information I’ve seen is that Type 1 shortens the average life expectancy by 12 years.  Ouch!  Since I don’t know what my life expectancy was before I was diagnosed, that isn’t quantifiable.  I don’t know what I would have gotten, so I don’t know what (x – 12) is.  And since it’s an average, it means plenty of people lose less than 12 years, others lose more and some even gain time.  When we were in grad school, my roommate and I made bad statistics jokes.  One was “skew the distribution in your neighborhood,” a play on Mr. Rogers.  I don’t want to be average; I want to skew that distribution to the high side and I’m doing what I can to get there.  I’m also hopeful that being diagnosed in my 40s means my odds are improved since that means 30-40 years less damage from high and low blood sugars in my body.  We’ll see how things turn out, but I’m planning to stick around for a long time.

At that same early endo visit, he told me I needed to start taking a statin to lower my cholesterol.  I declined immediately and we debated the subject for a few minutes.  I’ve done a lot of reading about cholesterol and am comfortable with my test results and lack of family history.  My doc agreed to let the issue go.  But in the next sentence he tried to scare me into changing my mind when he said “we’ll revisit it after you have a stroke or heart attack.”  We actually revisit the subject every time I see him when he reminds me again that I should be eager to start my statin regimen.  It’s not happening, but he’s going to keep trying to scare me into obedience.

The statin chat is my favorite example of managing diabetes with fear.  But then there are the other fun things to worry about over time.  When I told my eye doctor about my diagnosis he happily shared that we have some of the top retina specialists in the U.S. available right here in Cleveland.  Awesome!  But…I’d really rather not need to see any of them.  Each time I see the endo he asks if I’m checking my feet daily for injury.  Why my feet?  Because any unnoticed injury could be the one that ultimately leads to amputation of a toe or a whole foot.  Neuropathy from high sugar could mean I wouldn’t notice that I stepped on a rusty nail.  Circulation problems could lead to poor healing or higher risk of infection, and then they could need to remove that part of me.  Not something I’m interested in, thank you.  And one more that I forget about – when I was diagnosed with high blood pressure around the same time as T1, I asked why I was prescribed the specific medication I was given.  The reason for that drug?  It will help protect my kidneys from the damage diabetes can cause.  Oy vey.

My point here isn’t to scare anyone or to say that I expect to leave this world prematurely, blind and 7-toed.  My point is to explain that so much of Type 1 is about fear and the language of fear.  Nobody’s ever going to say I’m the most optimistic person they’ve ever met.  No chance of that! I’m often the sarcastic cynical in any crowd and all the possibilities of T1 scare me.  Of course I worry about the long term complications that could hit me down the road.  But I’m not good with living filled with fear and anxiety.  I prefer to think that I’m fighting and I’m winning instead of that I’m biding my time until I have the heart attack my doctor believes I’ll assuredly drop dead from without his help.  This is a chronic disease that can kill me and everyone dies from something wearing a pile of scars from experiences good and bad.  There’s no guarantee that T1 is going to get me and I’ll keep doing everything I can in the meantime so that something else gets me when that day comes.  I’m planning to go out with my eyes and toes intact, thank you very much.  Living in fear is way too much work.  I’m living my life.

On the side of positive reinforcement there are 2 organizations I’m aware of that celebrate lives lived successfully with T1 and both send medals to commemorate significant diagnosis anniversaries.  Lilly Diabetes awards medals at the 10, 25, 50 and 75 year marks.  The Joslin Diabetes Center also awards medals after 50 and 75 years of living with T1, and a certificate after 25.  Why are they giving out awards for reaching T1 milestones?  Because it isn’t easy to do and because it was impossible to reach those goals not so long ago.  I’m not holding out any hope for 75 years, but I’m aiming for those 50 year medals and can guarantee I’ll submit my application each time I hit one of those marks.

The pictures from my first skydiving experience tell the whole story.  I couldn't stop smiling before, during and after the trip of a lifetime.  Living!