Taking a little time this week. The view from not-my-computer is awesome. (Ignore the irony of posting this kind of sentiment from definitely-my-computer. You can take the girl away from the Internet, but DO NOT TAKE THE INTERNET AWAY FROM THE GIRL.)
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I can’t hear the name “Nick Jonas” without immediately hearing the then-teenaged cousins in my family clutching their invisible pearls and screaming, “OMGNICKJONAS” as if it was one word. In my mind, I think of Nick Jonas as a kind and smart … not because I have any personal experience to base that assumption off of, but because he’s also living with type 1 diabetes and I tend to be somewhat (read: entirely) biased towards people hosting broken pancreases.
Nick was diagnosed with type 1 diabetes about ten years ago and has recently joined Dexcom as a Dexcom Warrior. He’s been talking with members of the media about his new partnership and how CGM has changed the way he manages his diabetes, and somehow I managed to sneak in as a member of media. I missed the scheduled call with OMGNICKJONAS but his team was kind enough to carve out some time one-on-one while Nick was traveling. (And, for the record, this whole phone call took place with my daughter skipping by my office door, a giant inflatable stegosaurus being kicked around like a soccer ball. Such media.)
Kerri: You’ve been part of the diabetes community for ten years now, and have been an advocate for this disease almost since your diagnosis, right? Can you talk a little bit about what made you want to go public with your diabetes, and how that’s influenced how you feel about it?
Nick Jonas: I went public with my diabetes story six months after my diagnosis. The thing for me was about being as open and transparent as I could be to find support. I didn’t know any other diabetics. By sharing my story, I wanted to seek out and encourage people that this can be okay.
Kerri: So upon diagnosis you weren’t immediately greeted with stories about people’s Great Aunt Ethel who was mostly dead?
Nick Jonas: (Laughs.) No. Soon after diagnosis, I actually befriended a nurse whose son was a diabetic. For my mom and I both it was nice to have someone to talk with who had a better understanding of diabetes. People try not to overwhelm you with all of the information, but this friendship helped. I was encouraged.
Kerri: I’ve been wearing a Dexcom CGM system since 2006 and the data is incredible to see. How about you – has CGM technology influenced the way you manage your diabetes?
Nick Jonas: It’s one of those things that, for me, I feel like I have a best friend looking out for me. Which is the best thing. I manage my diabetes kind of by myself. I’m kind of personal about it. I like to have control over it, and I’m independent. With my CGM, I know what’s coming, and that makes thing so much more simple.
Kerri: Do you know the high and low alarms from the receiver by heart?
Nick Jonas: I do. (Laughs.) I’ve been totally in range for the last few days, though, so I haven’t heard the alarms in a while. One of the directors on KINGDOM, Michael Morris, is also on the Dexcom and we are always comparing our numbers.
Kerri: When I travel for work, I make use of the Share application for Dexcom so that my family can keep an eyeball on me. What are your thoughts on being able to SHARE data, and do you SHARE?
Nick Jonas: It depends on the situation. I don’t like my mom to be stressed about my diabetes so I don’t share with her, but my brother has looked in. We were recently in Las Vegas and when we woke up the next day, he knocked on my door and said that he received an alarm, and that I had been a little bit low.
Kerri: That’s like the ultimate “big brother” moment. So for those moments when you do SHARE, are there ground rules for the people who can see your data? Like “Don’t ever call me when I’m high, but call when I’m low” sort of thing?
Nick Jonas: Yes, we set those rules. Don’t stress if it’s a number like 200 mg/dL, but if I’m below 60 mg/dL you can call me.
Kerri: You’ve mentioned the perspective gained from life with type 1 diabetes. How has that perspective shaped you as an artist?
Nick Jonas: It comes down to responsibility. At an early age, I had to learn to live with a disease and how it affects how I live my life. I don’t want the things I’m able to do or not do be dictated by diabetes. It’s not perfect; days can be unpredictable. But at 22, almost 23 years old, I’m aware of what kind of a person I want to be as a result of diabetes.
There’s always a way to see something in a positive light. You’ll live a miserable life if everything that’s challenging is a disappointment.
Kerri: I’m glad you brought up the idea of perfection, because whether you want to be or not, you’re in the “role model” position in the diabetes community. How do you feel about having people looking to you for inspiration, diabetes-wise, and how do you stay inspired yourself?
Nick Jonas: I think it’s a two-way street. In moments when I’ve had tough days and needed a pickup, someone mentions that their child or friend has diabetes and that my story helped them. Hearing that keeps me doing what I’m doing.
Kerri: And you feel like you can be honest about the good and bad days with diabetes?
Nick Jonas: Yes, definitely. In the past, I’ve been hyper-insecure about admitting that I had really tough days because I want to stay positive. But without a doubt, anyone that lives with diabetes has tough days.
Kerri: I appreciate all of your honesty about diabetes. But diabetes can’t be the only thing we talk about. People want to know the life that diabetes is a part of, right? Like what bands are on your playlists these days?
Nick Jonas: Right now? I just made a playlist on Spotify, actually. I’m listening to a band called Purity Ring, this song by Melanie Martinez called Pity Party, and this song by Haim.
Kerri: Did you know that one of the girls in Haim has type 1?
Nick Jonas: Yeah, actually. My brother met those girls at Coachella and told me that one of them was diabetic. That was pretty cool.
Kerri: Did that make you like their band more?
Nick Jonas: I definitely liked them already, but finding that out didn’t hurt.
Thanks to Nick for candidly talking shop, and to Dexcom for supplying media photos that make me feel slightly uncomfortable for posting, but I’m going to do it in the name of science. For more information on Dexcom, you can visit their website. And for my personal Dexcom disclosures, you can read my disclosure page.
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.]
I missed the end of Diabetes Blog Week, but I loved the prompts and still have ideas trickling in here and there. So better late than never!
I don’t like catch phrases. (Forgiiiiiiiive me, especially since I just used a trite turn of phrase up there with the whole “better late than never” thing. Turn the other cheek, please.) I especially don’t like catch phrases that rhyme because I immediately lose focus on the meaning of the words and instead say “Rhyme time, rhyme time” over and over in my head, which is distracting. (However, I do have a soft spot for “Test, don’t Guess” because it’s both good advice and fun to yell.)
But this still works for me:
It’s not my favorite sentence or blog post, but it is a sentiment that still applies, a decade after blogging and almost three decades after diagnosis. Contrary to how my blog might portray my life, I don’t think about diabetes every moment of the day. But diabetes does influence many of the decisions I make throughout the day, like what giant purse I bring, or what kind of breakfast I have, or what sort of exercise I do. Or how I feel about certain things at certain times.
It’s not a back burner, but more like a crock pot that’s always on simmer. So long as it doesn’t burn the house down, I’m fine with that.
* * *
Today‘s (well, technically last week’s) prompt: If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.) Be sure to check out the posts from Diabetes Blog Week!
Getting all my disclosures out of the way first: I am on the advisory board for this conference and also presented as a speaker. My travel, lodging, and expenses for the conference were covered by Janssen, and I was compensated for my participation and my consultation. My opinions on the process and the conference are mine, but admittedly influenced. Bias lens in place! Moving on.
Two weekends ago, I was in Jersey City for the first (of what I’m hoping will become an annual event) HealtheVoices conference, put on by Janssen. The formal tagline description of the conference was “HealtheVoices Conference: Empowering Online Advocates” but in my head it was “HealtheVoices: Finally, A Bunch of Us In One Room.”
Most of my advocacy work takes place in the diabetes space, talking with people already familiar with diabetes. Or folks newly introduced to diabetes. Or working in diabetes. However you slice it, the majority of the people I come into contact with in an advocacy sense are touched by diabetes somehow.
But diabetes is only one “patient space” on the Internet. There are patient communities everywhere, spanning a slate of conditions. Cancer, Crohn’s disease, Rheumatoid arthritis, mental health, HIV/AIDS, lupus, multiple sclerosis … these conditions are just a small cross-section of the topics covered online. People come together through common needs and experiences, and dealing with health-related issues creates a melting pot of discussions and camaraderie.
the attendees – all photos courtesy of the Janssen photographer
I was really excited to be part of this conference because it helped me pop that diabetes bubble, bringing me outside of my comfort zone of personal experience and immersing me into a diversity of experiences. I could not have been more grateful for the opportunity, because it was inspiring and humbling all at once.
“I know I have something in common with all of you,” I shared during the presentation on compassion fatigue (a discussion about managing personal health needs and the growing needs of a growing health community) “But I don’t know the specifics of it yet. I know what my peers with type 1 diabetes are dealing with, but I am still learning so much about other health conditions. There’s so much I’m learning about what it takes for each individual here to have a ‘good day.’”
And I loved learning. Seriously, there were some amazing people in attendance. Here are few blog recaps from folks who attended, and other viewpoints can be grabbed from the #healthevoices15 Twitter discussion:
- Patient Health Bloggers Gather at HealtheVoices 15
- HealtheVoices 15: Our Voices Are the Same – Dina had some of my favorite quotes about the conference, including “I learned that although we have different diseases or health conditions and are from different online communities, that we are in fact the same. At the naked core – our struggles are the same, our triumphs are the same, and our hopes and dreams are the same.”
- But I Don’t Look Sick. We All Don’t Look Sick!
- HealtheVoices 2015: Peeking Into Other Patient Communities
- You Can’t Judge a Book By Its Cover
- HealtheVoices 2015: We Are Not Alone
me, Karen, Kim, and Jenni
I don’t know all the proper language and subtleties and nuances that are necessary to speak eloquently and respectfully about the health experiences of others, but I did feel that strong, unspoken, powerful thread of “me, too” running through this conference. We don’t deal with “the same” but we are all in pursuit of a life worth living, despite or because of whatever health challenges are in our lives.
the healthevoices patient advisory panel
Personally, I loved the diluted focus, stepping away from personal blood sugar checks and the beeping of pumps to see the patient community from 10,000 feet and the diabetes trenches, simultaneously. It wasn’t about a specific health condition, but about the human condition, (and as cheesy as that turn of phrase might be, I’m sticking with it because there’s been a surplus of coffee today). There was a high level of respect, community, and inspiration that left me needing a few days to process, and a lifetime to act upon. People with diabetes have a great and empowered community to draw from, and outside of the diabetes community is a bigger, broader, more diverse community of patient advocates who are aiming to change the world, moment by moment and breath by breath. Together, we are powerful.
To that, I give a solid “hell yeah.”
Sat down at the keyboard
And I couldn’t find the words.
I found the letters, that was easy.
Home row right there in my face.
But the words? The words? The words?
I can’t find those anyplace.
(I grabbed a pen and paper
To see if that would start the flow
… but it didn’t.)
I’ve run out of things to talk about.
Run out of things to say.
I don’t want to document the hold
That my disease has here today.
Yesterday we watched a movie.
And today, I’ll go outside.
I want to run and run and run until
inspiration and desire collide.
I’ll water plants – all the green beans.
I’ll log miles like a race.
I’ll hug my smallest Birdzone
And let the sunshine hit my face.
I don’t want to think about my meter.
Incessant arches of my graph.
I want to test and bolus and move on
Not let disease incite my wrath.
Burnout? No. Frustration? Nah.
It’s not like I’m done caring.
I just need a break. A small one.
And then I’ll go back to sharing.