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Posts from the ‘Dexcom’ Category

Dexcom Rash: Updated.

Frigging rash.  The issue first presented itself back in August 2012, leaving me scratching my head and itching my sensor sites for the next four years.

At first, I tackled the problem by trying a pile of different barrier tapes, but the only one that brought about any semblance of relief was the Toughpad.  For about a year, I used a Flovent inhaler (sprayed on my skin before applying the CGM sensor), but I was cautioned against it by my first dermatologist, who cited that the skin would become thinner and compromised after prolonged use.  For the last few years, I’ve used the Toughpad exclusively, and it’s held the rash at bay.

Sort of.

It’s never ever perfect.  I’m still itchy as eff sometimes when I’m in the midst of using a sensor (like right now, with my sensor on my right thigh and the skin around the Toughpad is bright red and I want to scratch it off until my nails break but the low alarm that went off two nights ago saved my ass entirely so I’m leaving the sensor on as long as I can stand it).  The rash doesn’t seem to be concentrated underneath the Toughpad as much as before, but now I appear to be allergic to the Opsite Flexifix tape.  Add that to the fact that I get skin irritation even if I put the new sensor next to any place where a sensor has even BEEN for the last month.

A week or two ago, I went to the dermatologist to further investigate my Dexcom rash and to hopefully find different ways to scratch that itch, so to speak.

The new dermatologist circled me like a shark, only maybe a shark in search of medical journal material.  “You’re having an allergic response to the medical device adhesive?”

“Yes.  Since 2012.”

He paused.  “So just don’t use that medical device?”

“Not an option.”  (Totally not an option, especially these days, when I can’t feel my low blood sugar symptoms and I don’t take action on my high blood sugar symptoms unless the CGM is alarming.  This is why I wear a CGM.  And while I’m taking care of two little kids, this is why I will continue to wear my CGM.)

“Okay …” said the dermatologist, looking at my arm and thighs again, assessing the skin damage.  “A Flovent inhaler, too?  You mentioned using that in the past?”

“Yes, but after being warned it would thin out my skin, I stopped.”

“Good call.  Listen, I think we can try two things:  a topical steroid cream, or a non-steroid topical cream.  I would like try the non-steroid one first, because the same skin-thinning issue would happen otherwise.”  He handed me a prescription.

We scheduled a follow up appointment and I was sent on my scratchy way.  The cream, it turns out, comes with a dozen different creepy warnings that have made me very reluctant to try it while breastfeeding my son, but I did put a little bit on my rash and, within the hour, my rash was on fire and the urge to itch was all consuming.  I’m not touching this stuff again until after I’m done breastfeeding, and even then I’ll be very conservative, in case I’m allergic to this shit, too.

I’m not sure what people are doing these days to manage their adhesive irritations, but I’m reaching the end of my available skin real estate.  Any advice out there? It’s been a very long few years of wearing the CGM 24/7 and I’ve just about run out of sites that aren’t already scaly and raw.  I hear rumors about a “sensitive” adhesive being released by the Dexcom team, and about certain elements being removed from the current adhesive makeup, but until those products are shipped to my house and not sending my skin into circus mode, I’m at an itchy loss.

Enjoy the Silence. Or Not So Much.

[Disclosure about my relationship with Dexcom]

During the first trimester of this pregnancy, lows were intense and weirdly symptomatic; a nice contrast from the hypoglycemia unawareness that’s crept in over the last five or six years.  (I ended up stashing a jar of jellybeans in the dining room hutch, only to have to move it into direct line of sight in the kitchen in efforts to keep up with the persistent low blood sugars of those first few weeks.)  As this pregnancy has moved forward, the lows have become slightly more predictable and the hypo-unawareness has returned, making the Dexcom BEEPS! and BLARGHS! more necessary.

Until that week when I noticed, “Hey, the alarms have been quieter.”  And then I realized, “Hey, the alarms aren’t working.”  Because overnight, my G4 receiver had been rendered mute.

When I received the Dexcom recall notice several months ago, it was very early February, and I was still using the G5 transmitter.  At the time, the only people who knew I was pregnant were my family and my medical team, but I knew, and I was stalking blood sugars with vigor (and a side of panic).  My endocrinologist, not a fan of the data output from the G5 application, asked if I would consider using the G4 for the remainder of my pregnancy.  Wanting her to check the “compliant” box on my chart (there’s a first time for everything), I switched back to the G4 the following week and have been on it since.

And for months, my G4 receiver was fine.  Alarmed all the damn time, vibrating and buzzing from my bedside table or my purse and alerting me to the changing needs of my baby-hosting body.  And then, all of a sudden, the speaker went full garbage, not working at all.  Only a vibration came from the receiver, making my phone* the best laid plan for alerting me audibly.

It wasn’t until I woke up one morning and saw the empty raisin box and the discarded juice box that I realized the night before wasn’t very comfortable.  And that I didn’t wake up because of alarms, but instead because of aggressive baby kicks.  I couldn’t ride out the rest of this pregnancy without replacing the receiver, because I was NOT waking up even with the phone alarms.  I needed high octane, receiver-in-a-glass-with-some-coins sort of jolting.  I needed to connect the alarms to Siah, encouraging her to walk across my face when I was low.  Or similar.

I needed the receiver to actually WORK PROPERLY.

So I went to the website – Dexcom has a special page set up for this particular issue.  There’s also a special hotline number to call: (844) 607-8398.  After a quick exchange with the woman on the phone, she asked me to confirm that my alarms weren’t working by doing the following:

  • press the center button on your receiver to access the Main Menu
  • scroll down to Profiles
  • select Profiles
  • scroll down to Try It
  • select Try It
  • scroll down to 55 Fixed Low
  • select 55 Fixed Low
  • verify that you receive vibrations first (vibratory portion of alarm), followed by beeps (audible portion of alarm).

And once we confirmed the alarm absence, a new receiver was scheduled to be shipped out.  Should be arriving in the next few days, in time for me to finish up this pregnancy as a G4 user (to make my doctor happy) and hopefully by staying in my threshold lines (to make my fetus happy).

If your G4 receiver suddenly craps out, sound-wise, call the hotline number and have a new one sent out.  Alarms that won’t alarm are alarming.

(* I follow myself on the Dexcom Follow app, along with one other person.  Yes, redundant.  In response to the dead receiver speaker, I changed the alarm settings on my phone so that I’d be alerted for highs and lows.  This worked, in theory, except when my phone was on silent or in the other room.)

Rasharoni.

As this pregnancy continues on, so does the rapid rounding-out of my abdomen (today’s issue = not being able to zip my jacket without over-taxing the zipper). Feeling quite like Violet Beauregard from Charlie and the Chocolate Factory.

Pluses to this expansion are that a. the pregnancy is progressing on schedule and b. the real estate options for my pump site and Dexcom sensor are literally broadening.  Which is useful, since my adhesive rash is in full rawr mode.

In response to rashes that are taking weeks to heal properly (they aren’t oozing or anything gross, but a particularly cold day or a too-hot shower will make the area where the sensor and any tape was get madly scaly, red, and itchy), I’ve needed to really mix up where my diabetes devices are applied.  I put a sensor on my lower left-side abdomen for the first time in almost a decade and it hurt like hell going in but did not leave a residual rash when I removed it.

New skin holds up better than my favored spots, but with only seven days of wear and an aversion to abdomen sites, it’s getting tricky.  At the Friends for Life Falls Church conference in DC this past weekend, there was discussion in several groups about rash strategies, but I can’t recall everything that everyone said.  (If you have tips on dealing with skin irritation, please share them!)

I am seeing a dermatologist again this week to see if they can offer any relief/advice/assistance, so there is hope.  For now, Toughpads, DermaSarra lotion, and site rotation are my best defense.  Because hope remains an itch I refuse to scratch … especially when there are so many other bits of me that need scritch-scratching.

Small Victories.

My only resolution for 2016 was to write more. Not necessarily here on my website, but wherever the words seem to come most comfortably. I have a few fiction ideas I’m fleshing out here at home, but blogging has always served as a way to unknot some of the thoughts in my head, mostly centered around my disease. Once my disease angst is unknotted (with blogging being the mental equivalent of gently tapping a fork against a knotted necklace chain until it goes slack and gives up), my mind feels better about diverting thoughts to things that are More Fun.

The problem with blogging is that it’s a public forum. Which means that I sometimes write with readers, or perceptions, or assumed judgments in mind. Sharing while simultaneously panicking doesn’t make for good writing, and more importantly, it takes away from the whole therapeutic/fun aspect of blogging. SO. I’m trying to blog like no one’s reading. Which means there may be more fractured sentences. And shit that doesn’t make the most sense. And probably less-than-lovely language, but oh well.

[ clumsy segue ]

I’ve been making use of Dexcom Clarity over the last few weeks and while it’s humbling to see my blood sugar graphs plotted out in full color folios, but there is a certain power to logging and reviewing my blood sugars.  (Huge sigh here because I make progress when I fastidiously review my blood sugars, which means I should continue to review my blood sugars, which I hate because is a tedious pain in the ass.  That’s kind of a diabetes theme:  tedious pain in the ass.)

Applications that actually DO SOMETHING USEFUL and don’t require extra work are my favorites, like the One Touch Reveal app that my Verio Sync uses and the Dexcom Clarity one.  Checking my blood sugar is mildly painful; reviewing data compilations should not be.

My numbers are improving, and with them, my mood.

This A1C is not entirely accurate (as it changes every few days when I review the PDF downloaded from Dexcom Clarity), but it’s very close to where my lab work pinned me, so I’ll fucking take it.

Also bringing much joy this week? These Tweets:

Unrelated to anything:  I found this sleeve smiling at me the other day:

And now it’s smiling at you.

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