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Posts from the ‘Dexcom’ Category

Guest Post: Keep Calm Once They Cover Dexcom.

Today, Colleen is taking over my blog while I’m taking a few days off.  And I love her introduction bio so much that I’m pasting it in without edits.  Colleen is terrific, opinionated in a way I respect deeply, and today she’s talking about the importance of having access to a continuous glucose monitor (CGM) as she ages.  Take it away, Colleen!

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I signed up for Medicare this year. Deep breath. (I’m having a really difficult time believing that I’m 65.)

I’m not using Medicare (yet) because I’m still working. I like my job. I like my insurance. I like my five minute commute. But mostly, I like my Dexcom CGM (Continuous Glucose Monitor).

I always thought I’d be retired, lazing around, maybe playing some tennis.

Not really, I’m not lazy and I haven’t played tennis in a gazillion years. But, I really was looking forward to doing some volunteer stuff, especially working with kids who have learning difficulties. I’m a former Special Education teacher and I love seeing/helping kids to “get it.” Literally watching that invisible light bulb start shining when they would “get it.”

Instead, I’m working so that I can keep my Dexcom CGM.

Not to worry. I’m not suffering – I work as a church secretary, an absolutely delightful job!

Several years ago, when I started seeing a dermatologist, he explained that removing those things growing on me would be covered by my insurance because, “It’s covered by Medicare.” I was insulted and stated, “For heaven’s sake, I’m NOT on Medicare.” He then explained that if it was covered by Medicare, then insurance would pay for the procedure. “Oh…”

And now, turning 65 – my own light bulb has turned on. But it’s not going anywhere.

I remember talking with my primary care physician at an appointment once and saying how I work so hard to maximize my use of health insurance. I am careful to coordinate lab work with her and my endocrinologist. I keep up with scheduled appointments. I try very hard to be a wise consumer of health insurance. And she calmly replied, “You’re cheaper to Medicare if you’re dead.”

Well, that sucks.

Maybe – but – the cost of keeping me alive might be a sh**load more (Kerri said I could use bad words) [Editor's interjection:  You can use all the words you'd like, Colleen.]  without my CGM.

And I truly believe that soon – Medicare will figure out that the expense of a CGM is whole lot less than the expenses of ambulances and ER visits and hospitalizations.

There is no public transportation up here in the woods so, I have to drive.

I almost always (I’m being honest) (95% of the time!) check Dexcom before I drive anywhere. I frequently have to make short trips during the day for work and Dexcom has certainly kept me in my office/the parking lot sipping on juice before leaving.

I hate shopping. Yes, really. Shopping irritates me. Shopping and going low is really annoying. The nearest real mall is over an hour away and there have been times that I’m pulled over at an exit or a rest area because Dexcom beeped at me. More juice … (Not easy in the winter when it’s frozen. Yes, I have glucose tablets, also.)

We get a whole lot of snow up here on our hill. And it’s not plowed every hour on the hour. There are times we literally cannot get out (or in). I’ve checked with our local police to ask – what would happen if I needed an ambulance in the middle of a snowy night? The answer – They’d hike up our hill with a sled to get me out if needed. Scares the sh** out of me.

Way back when I was diagnosed, I knew I would want a pump. At that time, you had to have been on MDI (Multiple Daily Injections) for a couple of years before they (insurance) would even think about approving a pump. By the time I was ready to start pumping, it wasn’t that difficult.

Thank you to everyone who advocated for pumps for all of us who want one.

Way back when, Kerri was one of those people writing about her fight to get a Dexcom CGM – with letters and refusals and more letters and more proof and finally – Dexcom. By the time I was ready to start using a CGM (I always swore there was NO WAY – have you seen the needle in those things?), getting a CGM wasn’t as difficult. (That needle? Not an issue.)

Thank you to everyone who advocated for CGMs for all of us who want one.

And now – those of us who are and will be the d-elders need to be able to continue using or begin using CGMs for better health and safer living. And your help is needed. You’re not just helping the older d-people. You’re helping yourself. Because you know what? We’re all leading healthier lives even with Diabetes because we work hard to stay healthy. If a CGM helps, we should all have access to that.

How can you help?

JDRF makes it easy. Go here:

Help others, and help your future selves -  and the children who will grow up – just by contacting a few of your state’s senators and representative.

It’s a win-win for all of us.

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From Colleen:  “I’m Colleen and I have type 1 LADA – Latent Autoimmune Diabetes in Adults. Diagnosed at the age of 55 (yes, really!), I was just a tad surprised. My husband and I live and work in New Hampshire and even enjoy the snowy winters. We could be retired but, the need for health insurance has us both working at a local church. Yes, together. Yes, we’re surprised. No, we haven’t killed each other, yet.  Hope you’ll introduce yourself and it’s nice to meet you!”

Please say hello to Colleen, either on this post or at her blog, D-Meanderings.  For more on the goal of covering CGMs for Medicare, check out these links:

Untethered, After a Fashion.

Around 8.30 am, I took an injection of Levemir.

At about 9 am, I switched my basal profile to “OTHER” and disconnected my insulin pump.  The OTHER profile has me at 0.025U basal rate per hour (as close to zero as I can get on my pump) but still holds all my other settings.  I kept the pump in my purse and the infusion set attached to my body, with one of those pump caps (there are two that come with every box of Insets) to keep the site closed.

At 9.03 am, I put on a skirt with a loose waistband that had previously been tugged down by the weight of my insulin pump BUT NOT ON THIS DAY.

Throughout the day, my basal needs are served by the Levemir injection, but I reconnect the insulin pump to deliver my boluses (allowing me to take my meal boluses and correction doses with precision and also without piercing my skin another time because the infusion set is still in place).

Around 9 or 10 at night, my Levemir injection is pretty much toast (over the years, I’ve seen that Levemir leaves my system after 12 hours, so I usually split my dose completely on pump vacations), so I reconnect my insulin pump and spend the overnight connected, receiving the basal bump at 5 am that is delivered to combat the dawn phenomenon my body experiences.

And then, depending on what I’m doing the next day, I’ll decide to keep my pump on or off during the day.  The Levemir pen in my toothbrush holder serves as a reminder to take a morning dose, if that’s my jam.

I like having a choice.  Can’t un-choose diabetes, so having a choice as to how I deliver my insulin is a plus.

It sounds complicated, but it works for where I’m at right now, because I am aiming to make good on the whole “fit diabetes into life, not work life around diabetes.”  And as petty and superficial as it may sound, it made me bananas (read: super angry, not yellow and slippery) when I went to get dressed for the sticky, summer heat and didn’t have a good place to shove my pump.  On the waistband pulled my skirt down.  Between the cups of my bra made for weird lumps and also unnecessary warmth.

This kind of frustration is the shit that can send me into a week-long DBM (Diabetes Bad Mood) and I am trying to mitigate as much of that as possible.  So off came the pump.  On came the highly structured plan to untether in the most graceful way possible.

Keeping an eye on my CGM showed when things were working and when things need tweaking, and I felt at peace with my diabetes instead of Rage Against the Islets.  Which, while a solid band name, doesn’t do much for my emotional health.

Beach-Borg.

Yesterday, my daughter and I went to the beach (with my mom and my aunts and half of the state of Rhode Island) and I wore a bathing suit.  I also wore a CGM sensor on my thigh and an insulin pump infusion set on my arm, connecting to the insulin pump clipped to my bathing suit.

There were a few glances, but nothing too awkward.  (Except the older kid who was sitting on the steps heading up to the bathrooms who, after staring at my diabetes cyborg stuff, nudged his sister in the shoulder and said, “What’s wrong with her?”  To which I replied, “Plenty,” and kept walking because honestly, I had to pee.)  It always surprises me, though, that I’ve never seen another pump or sensor on the beach.  All these people who are supposedly living with type 1 diabetes – where the hell are they?

It reminded me of the lady who was so concerned about the cell phone she thought I was about to ruin at the beach … hey, there happens to be a video discussing that very topic right here!

I’m rarely self-conscious about diabetes, and thankfully I have a small child who doesn’t leave much room or time for me to be stressed out about beach-borging.  But I am reminded regularly throughout the summer that my tan lines are a little different from that of my insulin-producing counterparts.

(Yes, I’m ready for Friends for Life, where borgs are the norm.)

 

Robot Arms.

[You can read my Dexcom disclosures here.]

The low alarm slammed into my ears from across the bed, coming from my Dexcom receiver on the bedside table.  A half second later, it echoed from my cell phone, where the SHARE app threw out a loud warning of its own.

LOW.

I reached over and clicked on my phone, which was closer than my receiver, going to the app to look at my blood sugars.  I “follow” two PWD friends in addition to following my own data, so the screen showed three different profiles.  The two that weren’t me were fine – nothing to worry about.  They were perfectly safe.  Everyone was safe!

Everyone but me, because my data stream claimed “LOW.”  Somehow that number wasn’t registering in my head.  It wasn’t mine.  Clearly.  Wait, what’s happening?

I rolled over and went back to sleep, entering the fifteen minute cycle of hear beeps, respond to beeps by clicking a button, head back on pillow (drenched with sweat, but somehow the low still was recognized by my consciousness), repeat.  My daughter was asleep next to me (she had appeared in our room around 4 am) and for a split second, my brain wondered who belonged to the brown, curly ponytail spilling across the pillow.

And then all at once, the alarms made sense; their intention clicked firmly into place.  Their sounds reached across and tapped me on the shoulder, pushing me with frustration towards the juice.  I uncapped the little bottle and drained half of it, relief hitting the hypo-panicked parts of my mind.  It only took a few minutes to paddle back from confusion, and within minutes, I was fine.

Once I was downstairs in the kitchen, I checked my email on my phone while the coffee brewed.  I spun through the data on my SHARE app, seeing the long, red tail of the low that had wrapped around me for over an hour.  I felt frustrated by the fact that despite well-timed alarms, sometimes the lows themselves remove my ability to respond.

Some hypoglycemic moments are quieter and laced with a gentle fog of frustration, one that makes me reach for glucose tabs and forget how many I have already eaten but ha ha ha that’s okay, everything will be fine in a few minutes.  But the lows that come while I’m asleep and my body wakes up in the trenches of leave me entirely confused and oddly content to sit in a puddle of my own cold sweat, a bottle of juice within reach on the bedside table but my brain is too damn stupid to encourage my hand to reach over.

Eventually, science and technology will find a way to add two arms to my CGM receiver that, in the event of a low, will reach over and slap me, then hand me the bottle of juice.  Then those robo-arms will hand me a towel to wipe my forehead.  And once it’s over and done with, they’ll hug me quickly but firmly and tell me to suck it up because there’s shit to do.

Device Frustration.

Am I a crumb because I want to rip my devices off sometimes and throw them into a great, blue hole?  Like this one?  My skin is so irritated by the adhesives and intrusions of my insulin pump and my CGM that the desire to heave them into this abyss is intense.

the Great Blue Hole – I look at pictures of this thing all the time

I hate the bulk of them.  The amount of room that my devices take up on my body and the trauma they have a tendency to leave on my skin.  I simultaneously absolutely love the convenience of them.  The fact that I can take teeny, precise doses of insulin without using a magnifying glass on a syringe or when the alarm goes off in the middle of the night, alerting me to a 70 mg/dL that was sliding towards LOW … this is the stuff that makes wearing diabetes devices worth it for me.

The pros outweigh the cons by a long shot, but the cons are a thorn in my side these days.  Or, more accurately, a wicked itch on my skin.

I took my insulin pump off one morning because the site was so sore, and so red, and the mark it left on my body was like a little diabetes bullet wound.  I have a high threshold for irritation and itch, but this site was terrible and after pulling it out, I didn’t have anything even close to resembling the desire to put a new one back in.  I went on injections for 12 hours before realizing that being on the road wasn’t doing my blood sugars any favors (I was having trouble bringing myself back under 200 mg/dL – rage bolus, anyone?), so once my Levemir injection timed out, I reluctantly put a new pump site in.  Admittedly, blood sugar control for me these days is better on the pump.

It’s not just my pump sites that are irritating these days.  This morning, I noticed that my CGM site had become red, itchy, and irritated OUTSIDE OF THE TAPE.  What the actual fuck?  Usually, I have a skin response underneath where the sensor actually is, or where any of the tapes connect.  But this round, I have a proximity rash thanks probably to continuously compromised skin (linking to it here because it’s too gross to put on the blog).  So now I’m getting a frigging rash in the places where the sensor isn’t even touching?!  I’m in a hard place of feeling safer with access to CGM data but access to CGM data produces a fierce itch.

I need a breather.  But taking one leaves me exposed.  HEAVE this shit into the great blue hole!  That’s what I’m doing mentally, chucking all these things that make my skin hurt and itch into the watery hole and watching them sink to the bottom.

… but then diving in to rescue them.  Because I hate injections and I hate going to bed without seeing my CGM trend arrow.

I Wanna New Tape, One That Won’t Itch.

I wanna new tape, one that won’t itch!
One that won’t give me bit, fat welts or make my skin twitch, twitch!
I wanna new tape, one that won’t give a rash!
Make it easy to wear my Dex, without the urge to “Hulk, Smash.”

(Channeling Huey Lewis and the News.  Click it.  You know you want to.)

I’ve been wearing a Dexcom on-and-off since 2006, but entirely ON and almost 24/7 since my pregnancy in 2010.  There’s a lot about CGM use that I’ve learned over the last nine years, but one thing I’m certain of is that the data is useful for me all the time.  I like the safety net it provides, particularly while I’m traveling.  So I wear my CGM, even when I’m not always happy with the actual blood sugars that it’s showing.  The data informs so many of my decisions.

But it’s tough to wear a medical device that you have an allergic reaction to.

In pursuit of CGM data and avoiding the stupid rash, I try out a number of different barrier tapes.  One that was recommended a few months ago was Mepitac tape (I bought mine on Amazon – no, this is not an affiliate link but only because they don’t let Rhode Islanders do affiliate linking) and I have been using it successfully for a while now.

I thought it would be a good substitution for the ToughPad, but it wasn’t wide enough to put underneath the sensor itself, so I use the Mepitac as a secondary tape (you know, when the edges start to peel and you need to reinforce them).  For a while, the Opsite Flexifix tape was giving me a red rash, so I wanted to move away from it and see if Mepitac was gentler.

It is.  While the tape itself isn’t nearly as sticky or sturdy as the Opsite Flex, it has yet to leave a rash (and I’ve been using it for about three months).  Unlike Opsite, the Mepitac tape can be removed and replaced without ripping up my sensor with it, which is useful for cleaning up my sites but not as good for durability.  It also travels well, and I keep a few pieces of it in my wallet in case of tape emergencies.  (I’ve also used it as a blister barrier for when shoes become unreasonable.  Useful stuff.)

I like options.  I’m glad there’s a less itchy one.  [insert The more you know star here.]

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