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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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.