The DOC: The 24/7 Support System I Never Knew that I Needed

I’ve lauded the DOC (Diabetes Online Community) time and time again for connecting me with individuals globally who are also affected by type one diabetes. And I don’t foresee an end to my desire to express gratitude for this amazing community, because over and over, members of it continue to blow me away with their words of encouragement and gestures of friendship.

My latest wave of gratefulness was spurred when I arrived home from work on Monday to a cheerful, Tiffany-blue envelope waiting patiently for me to open it. It was a delightful little package from my friend Sarah, who I “met” via Instagram over the summer. Besides diabetes, we share common interests in fitness, wellness, our pet dogs, and bright colors, among other things.

Sarah went out of her way to mail me a few goodies (shown in the picture), including a cute T1D key chain and an adorable cactus card with a message of support written inside. I was incredibly, pleasantly surprised by all of it. It wasn’t about the material items for me (though they are totally my style, and I can’t wait to make use of them). It was more so how she took the time to put it all together for me, cleverly incorporating some of the things that introduced us to one another in the first place, that really blew me away.

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Sweet trinkets from a sweet friend!

It got me thinking about the larger diabetes community I’ve met and harvested friendships with in the last several years. And as hard as it is for me to properly describe the level of richness, knowledge, and support that those friendships have given to me, it’s beyond easy for me to say that I am infinitely thankful for all of them, and I hope that in return, I am able to offer at least a fraction of the same to others.

With all that said, it’s even more mind-blowing to me that I resisted this community for such a long time. For the first 14 years or so that I lived with diabetes, I rejected the notion that I needed peer support to help me manage the emotional and physical aspects of diabetes. I turned down offers to go to diabetes camp. I didn’t interact with the only two other diabetics in my school’s district because I feared social isolation. In some situations, I even pretended that I didn’t have diabetes, because my yearning to be normal like everyone else overpowered my need to make my health a priority.

That’s why I don’t think it’s a coincidence that things started to turn around when I met other T1Ds my age. That marked the point where I could have open, honest conversations with others who were going through similar life events at the same time as me, without the judgments or criticisms I may have had to endure if I had those same conversations with family or doctors. While I know that I need to give myself and my personal growth some credit for improving how I manage my diabetes, I would be remiss if I did not also attribute some of that credit to the members of the DOC who have made meaningful contributions to my life and my outlook on it.

It’s funny that something special in the mail made me contemplate all of this, but Sarah’s thoughtful package to me is a tangible representation of how connections within the DOC have changed me for the better.

Thank you, Sarah, and another big thank you to those of you in the DOC that I have met, as well as those I have yet to meet.

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Memory Monday: The First Time I Self-Injected Insulin!

One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…

…the first time I self-injected insulin and how absolutely terrified the mere thought of doing so made me.

Since I’ve never really minded needles that much, you’d think that self-injecting would be a cinch for me. That couldn’t be further from the truth, at least for the first few times that I had to do it.

It goes back to one endocrinologist appointment when I was nine, maybe ten years old. My doctor and my parents were talking about how I was reaching an age where I should start to take on a little bit more responsibility in terms of my diabetes care. I don’t remember whether my endo or my parents suggested it, but one of the two parties said that a good starting place would be to start giving myself my own insulin.

Initially, I protested. I hated the idea. But I warmed up to it when my parents reassured me that they would check the syringe for me before I stuck it into my skin. At this point in time, I’d practiced drawing up my own insulin dosages. I’d pass the syringe along to my mother or father for the actual injection. So I had the first step in the process down pat, and it only made sense for me to put two and two together and do it all independently.

Since I was hemming and hawing over the prospect, though, my endo had the brilliant idea to practice on my father with a saline injection right then and there, given that he was willing for me to do it. As he rolled up his sleeve, I grinned wickedly (I was annoyed with him for some trivial reason that day) and waited while my doctor prepared the saline injection. As she brought it over, I panicked a little, and I must’ve asked two or three times whether it was actually safe for me to do this. Because even if I was irritated with him, for whatever stupid thing it was, I didn’t actually want to hurt him.

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Once I was adequately assured that the injection would be harmless, I took the syringe into my hand, took a deep breath, and stuck it into my dad’s arm. I remember pushing down on the plunger slowly, and my dad sitting in the chair, totally composed and un-bothered by the sensation. When I took the needle out of his arm, I exhaled loudly, not realizing that I had been holding my breath the whole time. What can I say, it was a nerve-wracking feeling. It’s not every day that you learn how to inject yourself, or someone else for that matter, with a syringe.

Over the course of the next week or two, I practiced my new skill on oranges supplied to me courtesy of my parents. With each practice injection, my confidence grew and I realized that it wasn’t that scary. I would press the orange against my leg or my arm, pinch at its peel, and give it an injection of salt water – super quick, super easy.

In no time at all, I felt brave enough to give myself my first self-injection. Just like I did with my dad in the doctor’s office, I breathed deeply before plunging it into my leg, exhaling only when I was done. And I felt the satisfaction of having done it on my own, which was sweeter than I thought it would be.

Working up the courage to self-inject is just one example of many experiences I’ve had with diabetes and being afraid to try something new. Whether it was trying a CGM for the first time or transitioning to a pump, each new thing I introduced to my diabetes care and management routine scared the hell out of me at first. But just like I proved to myself that self-injecting was nothing to be afraid of, I’ve shown myself time and time again that new things for diabetes aren’t always so bad.

Hypo and Tongue-Tied: My Woes at Work

“Okay,” I thought to myself as I sat down for my 90 minute meeting, “My blood sugar’s sitting pretty around 100 or so. I should be able to make it the whole meeting without experiencing a drop, since the last time I gave myself insulin was about three hours ago…”

The fact that I had the audacity to think that my body/blood sugar wouldn’t play any tricks on me is laughable.

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This was my recent struggle at work. Usually, diabetes doesn’t interfere with my work whatsoever. I’m sitting, somewhat stationary, at a desk for eight hours every Monday through Friday. There was an adjustment period to the sedentary life when I first started working at my job, but it’s been more than four years now, so my body and my blood sugars are used to it. Plus, throughout the workday, I go out of my way to fit in extra steps, whether it’s using a restroom on a different floor or parking my car far away from my building’s entrance. Combined with my higher activity levels before/after work and regular workweek eating habits, I’d say that I’ve struck a balance in terms of physicality and diet that makes for an optimal environment for my diabetes to function normally/predictably.

So when I DO experience a high or low when I’m at work, it throws me off…but only for a relatively short amount of time. I’m talking like 15 minutes or so here. That’s right about the amount of time I need to come up from a low. If it’s a high blood sugar, I need even less time to rebound. I simply bolus, drink plenty of water, and move on to my next task. (Only in cases of 300+ blood sugars do I get really nervous – it’s only happened a couple of times, but I’ve had to leave work when that happens either due to feeling sick or needing to go home to deal with it.)

But things were different the other day when I was in the middle of a meeting with a colleague and I could feel the slow and steady drop of my blood sugar. Despite having monitored it closely prior to the start of the meeting, it started to coast down. Here’s the real kicker, though – I’m pretty in-tune with my body and could feel that this was not an urgent low. I figured my blood sugar was somewhere between 65 and 75. I didn’t have my CGM or meter to confirm, and I felt like I could keep the meeting going…so I didn’t do anything about it.

And in hindsight – even if it is 20/20 – I wish I had done something.

Why? Mainly because I felt that I was virtually useless in my meeting. As I reviewed each page of the 80+ slide PowerPoint, I could feel my thinking start to deteriorate. Words were tumbling out too quickly and nonsensically. I wasn’t sure if I was making a whole lot of sense to my colleague. And that’s a feeling that I can’t stand. I don’t like thinking that I may have wasted her time due to my determination to “power through” a low. It’s a perfect example of low blood sugar causing a symptom other than shakiness, sweating, or sluggishness: In this case, it also caused stubbornness.

When I finally made it back to my cubicle, I slumped down into my chair and grabbed a juice box from my low supply stash while my CGM buzzed over and over, letting me know that I was indeed low. Within approximately 8 seconds, the juice box was crushed, and I couldn’t help but think how next time I had a meeting, I’d bring one with me…just in case.

Third Time’s the Charm: Here’s How I Restarted My Dexcom G6

You GUYS! I finally did it! I managed to restart my Dexcom G6. Sometimes, a little bit of trial and error pays off.

I restarted it by following the exact same steps that I linked to in my post from a few weeks ago. It involved five simple things:

  1. Allowing my sensor to expire and remain on my body
  2. Starting a new sensor session and choosing “no code” when prompted
  3. Running the 2-hour warm-up session for only 15 minutes, then stopping it
  4. Starting a new sensor session again, without a code (if you still have the code, though, that you used when you first inserted the sensor, then enter that into your receiver/app. But don’t make up a code or enter one from another sensor – just say “no code” if you don’t have it)
  5. Allowing the 2-hour warm-up session to take place and receiving readings once it’s complete

The only thing that was different between this time and last time was the steps leading up to the restart. What do I mean by that? Well, for starters, I made sure I was attempting to restart a sensor that was giving steady, reliable readings – it seems as though it’s impossible to restart a sensor if it’s experienced any sort of error in the 10 days it’s been worn. So this means that when the sensor expired, I’d been receiving readings consistently up until the moment it expired.

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That gap represents the sensor’s second round of two-hour warm-up.

That was the main difference. The location of the sensor I restarted was the back of my arm, which may or may not have affected the restart. I also restarted without using the sensor code, which I had set aside to use but somehow misplaced prior to the attempt. I have no idea if having or not having the code makes the restart more or less successful, but I do know for sure that I got three more full days of use out of my sensor. Cumulatively, that means that I was able to wear the same sensor for almost two full weeks! It might not seem like a lot to the marathoners who are able to make older G5 sensors last 3-4 weeks (I’ve even heard of people keeping the same one on and working for 6 weeks), but it’s exciting to me to have confirmation that it IS at least possible to restart a G6 sensor.

In terms of the sensor accuracy, dare I say that it was even MORE accurate on the second go?! I don’t have proof to really back that up, but honestly, it seemed that it was right on point with all my blood sugar readings (within 5-10 mg/dL). I don’t know how to explain that, but no complaints about it here.

The only other difference that was noticeable during the sensor extension was that I was prompted to calibrate at least every 12 hours. No big deal, since I had to do that when I was on the G5. But it caught me off-guard a bit at first, because on both my receiver and within the Dexcom app, a small blood drop icon was always visible onscreen (when actively checking the app or the receiver). Initally, it wasn’t too alarming because it was merely a reminder to calibrate twice daily. But then it became an absolute nuisance when weird “calibrate after __ A.M./P.M.” messages occurred multiple times per day. I would check my blood sugar at the appropriate time and enter the result into my app/receiver, only for it to be rejected and trigger another specific time-calibration message.

To me, that indicated that my sensor’s second go-around ought to come to anend sooner rather than later. It was getting obnoxious to have to wait and check my blood sugar manually in order to appease the Dexcom messages that kept popping up. Plus, it came down to my comfort levels with wearing a sensor for a certain length of time – I just don’t love the idea of keeping the same one on for ages.

But this was my first taste of success with restarting a sensor, so naturally, I want more of the same! I’ll definitely continue to try to extend the life of future sensors, but remember, follow the steps above at your own risk. When in doubt, simply follow protocols as outlined by Dexcom. If I experience an even more successful sensor extension, you can bet that I’ll have all the details to share with you all here.

 

 

Aim for an A1c of…What?!

All my life, I’ve been told that I should do what I can to keep my A1c levels between 6 and 6.5. This is the “ideal” range, the sort of long-term goal I should bear in mind on a daily basis.

So when my primary care doctor suggested that an A1c of 7 to 8 might be a more realistic, sustainable, and healthy zone, my jaw dropped to the floor.

He explained his reasoning for saying such a thing: Since people with diabetes obviously have different needs when compared to people without diabetes, it’s not entirely logical to expect a person with diabetes to maintain an A1c that they might have with a functioning pancreas. He said that as time goes on, it could affect cognitive abilities.

And then he said that this was the range that would be recommended to a person with type 2 diabetes – there’s no new research that indicates any difference in desirable A1c levels for a person with type 1 diabetes, so, as my doctor said, I should continue to aim for 6 to 6.5.

This was such a WTF moment for me, for a couple of reasons.

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Does anyone else feel super awkward taking selfies in exam rooms? Does anyone else even take selfies in exam rooms?!

One being that I had NO IDEA why he was saying this to me. He built up this whole explanation as to what the “new recommended A1c” is, only to inform me at the very end that it was only safely applicable to people with T2D at this time. Was he confused? Did he forget that I have type one for a minute there?

The other reason I was flabbergasted by this little discussion was that we hardly ever go into detail when it comes into my diabetes. In fact, he didn’t even ask me when my last A1c test was, or any questions regarding my insulin pump/CGM. He just asked the standard “how is your diabetes” question, to which I replied with a super-lengthy, not-at-all vague response: “good”. He did put orders in for the standard array of tests that I take for each annual physical, which would inform him of my blood sugar at that moment in time, as well as my current A1c. But it was nothing that I’d be talking to him about during that appointment because the results wouldn’t be available until late in the day. So yeah, I found the whole thing to be pretty bizarre and mildly misleading.

Coincidentally, I’ll be seeing my endocrinologist in a few weeks, and let’s be real here: She’s the one doctor who can best advise me when it comes to diabetes treatments and protocols. So I’ll be sticking with her recommended A1c range for me, which I have a feeling won’t be any different from what I’ve been told all these years with diabetes.

My New Low Blood Sugar Symptom

In the last 21 years of diabetes, my low symptoms have been pretty predictable and easily recognizable: shakiness, sweating, dizziness, and sluggishness are all signs that I need some sugar, stat.

But lately, I’ve started to experience one brand-new and totally weird low blood sugar symptom. I’ve decided to dub it “fuzzy tongue”.

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“Fuzzy tongue” or “terrycloth towel tongue” is now one of my low blood sugar symptoms.

I don’t know how else to describe it other than that it feels like my tongue and lips are covered in a terrycloth towel as my blood sugar starts to fall to a certain level, usually 75 mg/dL or lower. Simultaneously, it’s a numb and tingly sensation that feels so disorienting and makes the process of chewing glucose tablets or drinking juice a little more difficult, because it feels weird to eat or drink when my entire mouth feels like it’s covered in cloth.

In fact, the first time it happened, I took to Twitter to ask the rest of the DOC if there was anyone else who had experienced something like that before. And I was comforted by the many responses I got back that assured me that I wasn’t alone in feeling this strange symptom:

“Yes, from certain lows. Sometimes I feel like my [whole] body is buzzing and fuzzy, if not fizzy. Other times, it’s like my body says, “BTDT! Got the glucose tabs! Move on!”

“YES! This is a new symptom for me too (after 17 years of treating lows)..Thought I was allergic to honey the first time.”

“This is a common one for me. Tongue and lips. I hate it”

“Sometimes I get tingly lips or tingly fingers!”

“That’s almost exclusively how I can tell that I’m low”

“YES! If it’s a prolonged low, I get tingly lips and tongue. It’s super weird and really uncomfortable.”

“I get more of the tingling/partial numbness in the lips (‘fuzziness,’ I suppose) that some have described. Usually this occurs with a bad low (under 50 mg/dL).”

Those are just a few of the replies that my initial tweet received. I found these particularly interesting, though, because one person identified it as a new symptom, too, and others implied that it’s always been an indicator of low blood sugar that’s more likely to occur with “bad” lows. In addition to helping me feel a bit more normal about the discovery of my new low symptom, I also found this to be an example of the ways in which the DOC is uniquely unified. To an outsider, this whole Twitter thread probably makes zero sense and comes across as bizarre. But to someone part of the DOC, it’s just another conversation that brings T1Ds trying to get to the bottom of a ‘betes mystery together.

So even though “fuzzy tongue” is uncomfortable, I’m glad to know I’m not the only T1D who’s felt it…and I’m very glad that my body has found another way to alert me to a low blood sugar, especially since it’s a way that makes me want to correct it more quickly than ever before.

Why I’m Afraid to Turn 26

I’ve never been afraid of my birthday. In fact, I’ve looked forward to it every single year because of all the fun things that distinguish the occasion. I’m lucky to be able to say that each third of May of my life has been filled with celebration, gratitude, and cake – what’s not to like about that?

But this year is different for me. I’m turning 26, which means I’ll no longer be eligible for dependent coverage under my parents’ health plan. I’ll need to enroll in my employer’s plan and figure things out from there.

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I don’t want a cake or presents for my birthday this year. I’d rather affordable health insurance.

This is terrifying to me. Why?

I’ve heard the stories.

Alec Raeshawn Smith’s story sticks out to me the most. He researched his insurance options and when he realized that the out-of-pocket costs for insulin were exorbitantly high, he decided to forgo insurance because it seemed more manageable to him.

He passed away just one month after going off his mother’s health insurance plan.

His family believes he was rationing insulin in order to survive until he could afford to buy some more.

There’s nothing about Alec’s story that isn’t tragic. It’s especially sad and frightening to someone who is about to begin navigating the confusing, expensive, and ruthless world of health insurance.

I’m hoping that I never get to a point where I need to pursue the dangerous “solution” of rationing insulin. But I’m also hoping that the biggies of insulin manufacturing – Novo Nordisk, Eli Lilly, and Sanofi – wake up and realize that they’re doing more harm than good. In 1996, just one year before I was diagnosed with diabetes, one vial of Humalog insulin (which I’ve used and continue to use since diagnosis) cost $21. Fast-forward 20 years, and Humalog costs skyrocketed to twelve times the cost at $255 per vial. Why? What could possibly justify this? How could anyone say that it is right for someone with diabetes who needs insulin to survive, and who didn’t ask for diabetes or do something to cause it, to pay that much on a regular basis to stay alive?

One thing is for sure: Insulin prices CANNOT stay as high as they are. There’s simply no reason for it, other than shameless, disgraceful greed.

And that is the simple truth of why I’m afraid to turn 26 this year.