It may sound odd coming from me—an atheist—but much of what I learned about community started with the priests and pastors I worked with in the more-than-a-decade I served in music leadership positions for the Catholic and Episcopalian churches.
I worked for Father John Bell as his interim director of music for six months, and as a soloist and cantor for him for several years. I learned two very important lessons from John.
I had a choir member who left in a huff. I don’t remember why. I wanted to go talk to them. I remember standing with John in the vestibule as he greeted his parishioners. He said to me, “The best thing to do is let them walk away.” He was right. I took that into my leadership of TuDiabetes and other diabetes communities.
I was really short-handed in the choir for the 9am service. Two people singing. That was it. I had asked him to petition the congregation for volunteers. It hadn’t worked. He told me to “ask for a number.” “I need three women and two men to join the 9am choir.” The next Sunday, the chairs were filled. More than that came. It reminded me at the time of the advice to, in an emergency, ask a specific person for specific things. You—call 911. You—hold back the crowd and give us some space. You—lift up his head. It’s much more effective than “somebody help me.”
I learned ways to not run a community from priests I worked with, too.
From the priest who ran our campus ministry in college, who would snap at me, call me clumsy, or complain about how he was mistreated by people in the community. When I encouraged him, in private discussion, to turn the other cheek, he snapped that those people weren’t Christ-like. I learned that good people can be wrestling with struggles that may cloud their judgment.
From the pastor for whom I ran the children’s choir who made me wait an hour in the hallway and then dismissed the efforts of the children. “Oh, did they sing on Sunday? I didn’t notice.” At the Mass he presided over. I learned that indifference and impatience were forms of hostility. And that they broke trust.
Why do I mention all of this? Because people can be very good, and also very flawed. People can be driven to serve, and still be fallible. Growing our community takes all types, at all points in their journeys.
While I don’t believe in the god these men honored, I always believed in the communities we served.
Negativity builds cheap community. It’s easy to be riled up together. To sharpen pitchforks together. To picket industries together.
It’s harder to grow together. To mature together. To nurture patience and understanding together.
I’ve learned from both the special needs parenting community and the disability community to ask “What would be helpful right now?” And “what is that experience like for you?”
What can you do, today, to help someone grow in their journey? To reach out to someone struggling? To whom might you ask those questions today?
February was quite a month for our community - with 2 awareness and advocacy initiatives at full throttle: Spare a Rose and Diabetes Art Day. A lot of wonderful posts surfaced this month and I am happy to point you to some great ones.
Best Use of Humor
Moira of Despite Diabetes: "Those questions we all get..."
I can't wait to use some of these suggestions in her handy guide for answering ignorant questions.
Best Vlog
George of Ninjabetic: "Back to D Future"
What would you tell Dr. Banting about living with Diabetes in 2014? How do you think he'd respond?
Best Recipe
Katy of Bigfoot Child Have Diabetes: "Waffle Factory Tour"
Katy and I are both going through the pangs of learning how to provide GF foods for our kids. And she is baking in bulk. This waffle recipe is low carb and tasty, too? Sign me up!
Best Use of Photography
Stephanie of robotPANCREASattack discovered a cool piece of street art that she had to share with us.
Best Advocacy
Yours Truly of Sweetly Voiced: "Snickers"
Well, this is awkward. If I didn't really REALLY believe in this post against bullying people with diabetes, I would never choose my own post for an award, but several people nominated it, so I'm just kowtowing to the fans today, okay?
Best Non-D Related Post
Heather of Unexpected Blues: "...Why I'll Never Be a Successful Writer"
Heather may feel like she's insulating herself from us with her gorgeous poetic imagery, but I always feel she lays herself bare with it and I adore her for it. Her metaphor of drowning in this post is one of the most beautiful things I've read in a long time.
Best Post by a Type 1
Meredith of With a Side of Insulin: "The Truth About Diabetes"
Meredith speaks to the fundamental truth about what it's like to live with an invisible and awfully temperamental illness.
Best Post by a LADA/ Type 1.5/ Not otherwise specified
Katy (again) of Bigfoot Child Have Diabetes: "Auto-Correct"
Katy gets a nod in two categories this month, which shouldn't ordinarily happen, but this is no ordinary situation. I really related to how she describes low blood sugar and my heart went out to her that it's from a perspective that a mom of a PWD doesn't ordinarily experience it.
Best Post by a Type 2
R.C. at The Fat Side of the Tracks: "What Do You See?"
A plea to HCPs to see the person and the effort...and not just the numbers.
Best Story of a D-Mistake
Victoria of Victoria Cumbow: "Miss Manners got it right."
It wasn't Victoria's mistake, but she highlights where the Diabetes Online Community may have misstepped by not remembering our own manners when faced with outrage over an etiquette column.
Best Motivational Post
C of C's Life With D: "Why?"
Our CDEs devote countless hours of education and preparation to spend their careers helping people with diabetes succeed...but they can't get no respect. C asks us to think about the double standard we impose.
Best Diabetes Art
Reva of Type ONEderful: "Diabetes Art Day 2014"
This was certainly a tough category this month now that Diabetes Art Day has moved into February. Reva's 3-frame depiction of low blood sugar left me just sort of staring at the screen with my mouth open. Yes. Yes, exactly.
Best Comment
Linda made a comment to Katy that summed up what all Parents of PWD deserve to hear.
THANK YOU to all of those who made nominations and to all of those who were nominated this month. We couldn't do this without your participation and your passion for writing and sharing others' great writing.
Sometimes everything gets screwed up and it's all for the best.
My 2yo son Dibbs was screened for celiac disease and for celiac genetic markers at the same time his big sister was in July 2013 through a free screening session by a team from the Center for Celiac Research out of Mass General Hospital for Children.
In late August, we learned in a letter that Dibbs was negative for antibodies and that Sweetie was positive. By the end of September, we had her official biopsy-confirmed diagnosis. By the end of December, we had her (and my) genetic test results, but not his. I wrote to and called the research clinic and explained my urgency to know whether or not my baby also had the gene we have. They told me that, as soon as they had more testing kits arrive, they would expedite his test results and email me since his sister was a confirmed diagnosis.
But in February, I received an email saying that the original letter stating that his celiac antibody test was negative should never have been sent. They did not have any record of actually performing the test and did not appear to have a sample on which they could perform the genetic testing either. His blood sample was just not there.
Now, this is where I should say that, while I was angry to have learned I received false results, the Center for Celiac Research has been very communicative and helpful in exploring what happened. They recommended I have my son re-screened elsewhere and sent the case to a review board.
My son's pediatrician ordered a celiac panel for us last week. A celiac panel consists of at least these 4 tests:
tTG (anti-tissue transglutaminase)-IgA
EMA (anti-endomysial antibodies)-IgA
IgG
Total serum IgA
Now, the reason you need all of them is that, if #1 alone is positive, it could be a false positive if you also have another autoimmune disease (like, say, type 1 diabetes). If #2 is negative, it could just be that you don't have enough intestinal damage for it to show as positive yet. Test #3 is kind of a backup test for a different form of antibody, but it's not nearly as specific for celiac. And if you're found in test #4 to have a deficiency in the amount of IgA antibody you're able to produce, well then, you may as well just discount the whole lot of it.
For the record, Sweetie's panel results as run by Children's Medical Center (with standard reference range they gave us in parentheses):
tTG IgA: >128 (normal range <10)
EMA IgA: 1:80 (normal range 1:10)
IgG: 1 (normal range <10)
total serum IgA: 152 (normal range 46-345)
Guess where Dibbs' problem was though. That's right. A problem with Test #4. He is apparently IgA deficient. His total serum IgA clocked in at...10.
If you have a very low total serum IgA, that can invalidate the three blood tests that rely on your IgA levels. People with celiac disease suffer from low total IgA levels about 10 to 15 times more frequently than people in the general population.
Now, Dibbs has no symptoms for celiac, we don't have a genetic result for him to know if he's susceptible, and the other three tests came back negative/normal range. So that's good, right? Except for the whole "invalidate" part. Our pediatrician has deemed the panel "inconclusive" for this reason.
IgA deficiency also, however, according to my friend Wikipedia, has "an association with autoimmune disease" with patients having "a higher risk of developing autoimmune diseases in middle age."
Well, crap. Seems the crosshairs are on my little fella as well.
But here's the silver lining as I see it.
First of all, nothing seems wrong with the boy, and of course we're glad of that. :)
Secondly, I've since discovered, in all my communication with the research coordinator who did or did not run the original test, that their clinic tests only for tTG IgA. They would never have run the total serum IgA test for this research study to know that he was deficient.
So had they actually run his sample, I'd still have received a negative result. But I wouldn't know that I couldn't trust it. If nothing had gone wrong with Dibbs's screening, I'd have had no reason to have him re-screened. I would not have suspected IgA deficiency. I would not have understood that the Center for Celiac Research runs only the 1st component of the panel. I would not have any of the information I currently have.
But I'd have the HLA genetic marker results...which I still intend to get.
In the meantime, like I said, he's asymptomatic. I hate to think that I'm continuing to expose someone to gluten who may be likely to present with celiac or even that I might somehow increase the odds of his developing an autoimmune disease by the choices we make now, but here's the thing...
As Hubster and I always say, you do the best you can with the information you have in the moment. We are already lightyears ahead of where were with our daughter who was a year and a half older before she was diagnosed. We are already expertly prepared to deal with diabetes and celiac. And if all Dibbs is is IgA deficient (one hopes), it's mostly harmless and there's nothing to be done about it.
As Wendy relayed from Dr. Fasano in a post that gave me comfort after my daughter's diagnosis, "you can't go back; you can only move forward."
I like a good joke. I can even take a good joke about myself. And I know that I've laughed at inappropriate jokes. I know most of us have. But we need to talk about what's at the root of some types of our humor.
Even comedians have started to admit that there are realms of humor that should be handled differently. Not off limits, per se, but with the subject of the punchline in mind. Patton Oswalt wrote last summer about his complete 180° in understanding why he was wrong about rape jokes. Not that rape had some pristine status of "off limits" in terms of topics that absolutely could not be joked about, but this quote of his stuck with me:
In fact, every viewpoint I’ve read on this, especially from feminists, is simply asking to kick upward, to think twice about who is the target of the punchline, and make sure it isn’t the victim.
Today, for your consideration, Internet, I bring you: The Diabetes Joke.
Many of us have seen this meme. Something along the lines of a math word problem involving candy bars or cupcakes or some other decadent dessert. The question states that Bob/John eats a certain number of a certain number, so what does he have now?
Diabetes. Bob has diabetes.
It's hilarious because... Well, because we as a culture are okay with fat shaming, for one. And only fat people get diabetes. They bring it on themselves so they deserve to suffer the butt of the joke. HA. If they'd just shown a little willpower and resisted that kind of food over the course of their lives, they wouldn't have diabetes. It's okay to laugh at their lack of willpower! Laugh with me!
Whether the joke is about someone losing a foot, eating so much / drinking a soda so large that it's diabetes-on-a-plate / diabetes-in-a-cup, or feeling stuffed after a meal and giving yourself diabetes, we get it. You're equating indulgence with an extreme consequence. And it's a little absurd, so it gets a chuckle.
And whom does that hurt? Can't we just take a joke?
Just like a rape joke, a joke about an illness - any illness - places someone struggling with a life-altering, soul-crushing, debilitating experience as the punchline of a joke. I have struggled with diabetes every day for the last twenty-three years. I've been comatose. My parents nearly lost me at diagnosis. I've had hypoglycemia and not known where I was. I've been afraid I wouldn't wake up to be there the next morning for my two children. And I've campaigned for children in the developing world for whom a diagnosis of diabetes is a death sentence.
So diabetes, in general, is not incredibly funny to me.
That being said, there are still plenty of ways I can laugh about diabetes and the situations we struggle with. I follow the work of several talented diabetic comedians. I enjoy the comics my DOC friends publish in the Sunday Funnies. I share hilarious videos. Do you know where I have to draw a line though?
The line where it's funny because we deserve this struggle.
Now, this is where you'll argue, likely, that it's different because of course the OP is talking about type "TWO" diabetes. Not the kind I have.
Stop gaslighting me. Stop telling me that it's just a joke and I'm overreacting. You didn't mean my illness. You meant the other guy's illness. The fat guy's illness.
That's like telling a family fighting cancer that "It was a joke about cervical cancer, not childhood cancer. Jeez, grow a thicker skin, people."
First of all, Type 2 diabetes is not any easier than what I have, so the punchline victim is someone who is fighting an equally hard battle. In some ways, their challenges are even greater than mine. But you know what? Whatever version of a disease a person has, it's a struggle for that person who is sick. The person in the center ring. The person who is afraid, who is bombarded by media blaming them for having given themselves this disease. The person whose well-meaning GP and Dr-Oz-loving-Readers-Digest-reading family probably tells them that it can be "reversed" if they just start toeing the line, shaming them if and when they fail.
Type 2 Diabetes is a life-threatening, serious, progressive metabolic illness. It can't be "reversed." It can be well-controlled to the point that symptoms lessen - and if you want to call that a cure, that's your prerogative - but you can also be recovered from addiction for years, too, and easily slip back into the danger zone. Type 2 puts wear and tear on your body and, though you might mitigate some damage, you won't "beat" it. No matter what that checkout line tabloid headline promises you.
We even hear this diabetes victim shaming from people with my version of the disease who make sure you understand that, in our case, you see, we're blameless. My child didn't give themselves diabetes. Implying, of course, that there is a type of diabetes you can bring upon yourself.
It's a fat person's disease, so you believe. Nevermind that only roughly half of people with Type 2 are obese and those who do carry extra weight actually seem to have protection from the killer instincts of type 2. Less likely to die than the 20% of normal- or under-weight counterparts with the same disease (it's called the obesity paradox). (If you haven't watched surgeon Peter Attia's TED talk about this, go now. You'll probably cry. I'll wait.) But Type 2 is not really my specific area of expertise, so I'll move on to a related point:
We are totally cool shaming fat people. They are still a very safe target for our societal scorn and derision. They're our comic sidekicks - the jolly fatty - and we all know they (all of them, right?) uncomfortably joke about their own weight, so surely it's fair game for us, too. "Hey, I have fat friends and they think it's funny when I joke about it." That's like "I have a black friend, so I couldn't possibly say something racist."
And we're doing fat people a favor when we "motivate" them to conform to our definition of healthy, right? Because you can tell how healthy a person is just by their weight or their diet? This wonderful post on xojane titled "What's Wrong with Fat Shaming?" reminds us that "shame is not a catalyst for change; it is a paralytic." If I have type 2 diabetes and/or struggle with obesity, your joke about me eating candy bars and getting a disease doesn't motivate anything in me but self-hatred.
So maybe I just can't take a joke. Maybe I actually know people who have died from diabetes. Who have suffered at its hands. Whose family believed it their own fault. They deserved to die.
We do it to other diseases, too. The shame diseases. Lung cancer. AIDS. When you say you lost your Nana to lung cancer, people say "Oh, did she smoke?" Yes, she did. So she must have deserved to die. She must have been less deserving of our compassion, our pity. My grief must be dampened by that. That blame. Whew. That feels better. I'd hate to think she didn't kick herself enough in her final month of struggle.
Maybe your stepdad doesn't "take care" of his diabetes (that he lets you see). Maybe he doesn't tell you how scared he really is. Maybe your mother had a plate of strawberry shortcake for dinner and then again for breakfast. Maybe there's a lot she doesn't understand about her disease because access to proper behavioral education isn't available to her. Maybe she is also scared and frustrated. Maybe she's exhausted by this damned disease.
And maybe diabetes is frightening and headed for you, too (1 in 3 people will be diagnosed with it), so if you make light of it, if you joke about food comas and candy-bar-induced disease, it feels less scary.
But the joke's on you. And you may find someday that it's not actually all that funny.
I have to give a shout-out to Asante for a benefit I hadn't considered when I started their Snap pump in December.
On Monday, I knew I needed to change out my pump body before lunch (3 units remaining), but between the cranky toddler and the gluten-free food prep for the preschooler, I forgot. I made lunch, we ate quickly, and Dibbs climbed into my lap and passed out on my shoulder. Then my daily alert went off (thanks, Snap). I'd forgotten to bolus for lunch, too, apparently. Yikes!
Now I've got a sleeping two year old nuzzling my neck and I need to bolus insulin and I don't have enough left in the reservoir to cover my lunch. I needed to change out the whole thing.
Wish I could say that this kind of thing doesn't happen a lot, but, you know, kids.
No worries. I've got this. With one hand tied behind my...toddler.
Between the perforated packaging on the pump body, the self-priming tubing, and the one-button release for the cartridge/controller connection, I did it all while never disturbing the little boy in my arms. There was no reservoir to fill, no syringe to handle. Just a glass insulin cartridge to pop in. I did it all with only one hand.
Well done, Asante. From an exhausted mom...and a well-rested two year old.
The first time I learned about the efforts of the International Diabetes Federation's Life for a Child program, I watched one of their videos where they described what it is like for a child with type 1 diabetes in the developing world.
I cried as I listened to them talk about families being forced to choose between the cost of feeding their 4 non-diabetic children for a month or buying a bottle of insulin for child number 5. Child number 5 does not come out on the winning end.
In many parts of the world, news of a diagnosis like that which my parents received when I was 10 years old also comes with preparation for an inevitable and tragic loss. Most children with type 1 die within the year.
You know, 8 years ago today, my husband met me for our second date with a bouquet of small dried out purple flowers and baby's breath filler. He handed it to me sheepishly and apologized that it was the best the supermarket on the way had to offer. Flowers have never been his strong suit.
This year though, he can save the stress of that supermarket stop. We've chosen to spare the whole dozen. For $60, we are providing the means for ONE child to have ONE year worth of insulin.
Insulin here costs a lot more than that, yes - $150ish a bottle, but because IDF can do a lot with a very little, they aren't asking a lot.
Our contribution is a start, but because there is more than one child out there in need, I'm asking you to search your hearts and take a glance at your bank account and consider whether you've got just a handful of hope to hand someone, too.
1 rose = $5 = 1 month of insulin for that child.
A dozen roses = $60 = 1 year.
Think of the parent who holds their sick, suffering child for the last time, knowing that a bottle of insulin would have saved his life. It makes me heartsick.
Valentine's Day is about LOVE. Not flowers. I choose love.
I want to tell you about what happened during the insurance payers' panel at the DiabetesMine Innovation Summit back in November. I've been meaning to write this up for some time now. TL;DR version: some patients stood up and yelled at some insurance executives and then I had to share a plane ride home with one of them.
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We were asked to politely write any questions on a post-it. A post-it.
We listened as each of the five panelists representing insurance companies (payers) gave their perspective.
You've got to understand, they lamented, it's REALLY hard for your insurance company to figure out how to decide treatment coverage for large diverse patient populations and still be competitive.
Many of the patients in the room were shifting uncomfortably in our seats. At least everyone at my table was. We were having a hard time hearing how hard it is for the big insurers.
Corinna Cornejo, with whom I've worked on committees and shared countless phone calls - whom I have always found to be savvy, smart, diplomatic - leaned across the table.
"I kind of want to stand up and say 'I don't give a $h1t about your balance sheet'."
"You should," I mouthed off. "I'll stand up with you."
And then...she did.
The air seemed sucked out of the room for me. $h1t.
That was my cue. I jumped to my feet and started talking, my feet ever comfortable on rickety old soapboxes. I spoke about access. Asked where the payer stood when pharmacy benefit management companies (like Express Scripts International and CVS Caremark) change 780,000 patients' medications (via formulary exclusions) without consulting their doctors or the patients affected. Without letting them know how they can discuss it with their insurance provider or how they might advocate to continue their therapy. I asked why they couldn't take a patient-centered approach to explaining those changes to their customers. I spoke about how hard it was to find a phone number or a website or an appeal form when all we want as patients is the opportunity to discuss our needs, our therapy, or our medical history with the people high above us making decisions that affect our very lives.
"Where is the letter with every denial or change in service that tells me whom I can call at your company or how to file an appeal? Where is the patient access to YOU the insurance company? Patients in this room represent the top 1%, most activated, most engaged patients," I explained. "If I can't navigate this system to fight for what I need, how can the average patient?"
Apparently, no matter how fluorescent you make a post-it pad, the act of scribbling out my question with a sharpie on it is just not as satisfying as the opportunity to use my voice.
I had a pretty good rhythm going in the beginning. Donations were coming in, my first video was done and it got the attention of Express Scripts, gaining me a phone call with CMO Steve Miller.
The second week, I was learning about how I needed to make sure I walked without IOB (insulin on board), and learning that, no matter whether I snacked first or didn't, temp basaled or didn't, I would go low or high. I couldn't seem to hit it right on the mark. Always one of the extremes.
Video 2 was a tribute to my husband.
By the middle of week 3, I'd walked 24 miles. I was getting it done and feeling pumped.
Then Icemaggedon 2013 hit Dallas. There were four or five days where I couldn't walk down the sidewalk without slipping. Solid ice. (Though I braved at least the front- and back- yards to record my week 4 video. Every time Dibbs watches the outdoor scenes of this one, he says "Col! Brrrr" and shivers. It slays me.)
Then, and for several more days, it was too cold to take my little ones out in the stroller in good conscience. And with Hubster coming home exceptionally late from the bad traffic, my walking was significantly set back. 5 miles behind schedule in week 3 turned into about 14 miles behind by the end of week 4.
I started week 5 with the daunting task of completing 24 of my 50 miles in the final week.
AND I DID IT.
I was walking between 3 and 6 miles a day. Walking with the stroller in the mornings, having their grandmothers watch the kids while I walked in the afternoons, going out walking at night after my husband was home. I am so sore and exhausted. My calves ached. My plantar fascia cramped.
There were times I went out without glucose tabs. Or gloves. Or my CGM (whoops).
There were times I went out without setting a temp basal beforehand (always low). And times I scaled it back too far (hello, highs).
There was the day at the Purple Park where my almost 4yo made a break for the soccer fields to go try to get in on a game with some high school boys and I look down and I'm 91 double arrows down. I drank the juice boxes and ate 4 glucose tabs and wondered desperately if she would ever stop running.
I walked in the snow. I walked in the rain. I pushed 80 pounds of stroller+kids. I walked alone. I walked with Hubster. There was one day where I walked tight circles around a still-running car full of sleeping children still buckled in their car seats. Anything to get these miles in.
I proved to myself (I was the biggest naysayer on the fundraising committee) that Peer to Peer Fundraising had potential. I brought in over $1,200 for the foundation.
I made some cute little videos, the audio often recorded in the worst of conditions. Two of the songs were recorded in my bedroom closet and, even then, with a child in my lap still. There is no space in my home safe from my children. "Mommy? Where are you, Mommy?" Shhh, I'm recording a song. [hit record] "Mommy, I'm pooping." [stop recording abruptly] Repeat.
What I learned about my body and exercise is this:
I hate exerting my body. I hate the burn, the low blood sugars, the glucose tabs, hitting the "wall," the muscle cramps, and the charley horses. There is nothing I like about exercising.
But I was really proud of myself for doing it anyway.
I know that it will help my body. I know that it lowers stubborn highs faster than insulin can. I know that my children need to think of exercise as something we all do to stay healthy.
But my favorite part?
The knowledge that I could finally take them to and from the park without excuses. We had picnics. We climbed ladders and "spiderwebs" and rocks. We had adventures. We explored "nature."
And we just genuinely enjoyed being out together in the world.
I felt empowered pushing that stroller around our neighborhood (except for the one hill on Bethany Drive that I afterwards decided to avoid for all eternity). I walked to and from the grocery store (walkability score = it's a wonder I was not flattened by maniac Texas flying cars along sidewalks not meant for pedestrian consumption).
I learned that I almost always need to (1) dial a very low temp basal for the duration, starting shortly before I begin, (2) eat an uncovered snack before I leave, (3) have absolutely no IOB in my system, and (4) carry at least 2 rolls of glucose tabs. (<--not medical advice YDMV)
I learned that I'd really like those gloves you can use with a smartphone. (Got them for Christmas!)
I learned that I will ALWAYS forget something and that I will sometimes forget EVERYTHING.
But the most impressive thing I learned is that my friends will step up to support me if I ask and my ask is meaningful.
Of my 41 donors, half were members of the Diabetes Online Community who certainly didn't have to give, but know what it means to have found support online. And half were people in my life who are touched by diabetes primarily just through knowing me...and I was overwhelmed by their support for what I was trying to accomplish.
It was a long trip, but a good road. Thank you, everyone, from the soles of my shoes.
I am currently trying the Asante Snap insulin pump for 4 weeks. (This is going to be a thorough first look, folks. Go potty now.)
Watching their ads, I'd shrugged off their emphasis on how quick the pump is to change and prime in much the same way that I shrugged off Omnipod's "we've got no tubes!" angle. Big whoop. Having worn Omnipod off and on for 5 years, I find tubelessness to be a pleasant feature, but it's not life-altering. What else ya got?, I often ask the companies who tout a single major design innovation.
But Asante may actually be on to something. As I close out my first week on Snap, I am finding that my favorite thing about Snap is how little I have had to mess with it. I'm on Day 6.
No cartridge change (I finish up my 300 units today around dinner time)
No tubing change
No priming
No battery to mess with changing or charging (the controller charges its small backup battery off your disposable pump body battery)
Just a site change so far.
The prefilled 3 mL pen-style cartridge? I got an Rx and a box from my local pharmacy with 5 cartridges. That's about 30 days for me. I'm still on my first one. I haven't touched it. Same pump body (what the cartridge slides into). Because the insulin is not compromised by plastic cartridge or bag chemicals as it can be in other pumps, it sits happily in its original glass vial/cartridge, tucked safely away (I can see it through the viewing window - been missing visibility since switching to tslim and Omnipod), and I don't even have to change my TUBING until the cartridge is empty. Fresh insulin is coming through the tube straight from the sterile vial. (Snap's pump body is currently specifically designed for Humalog cartridges, but Novolog is coming next, they say - it will take designing an alternate pump body due to cartridge length and diameter. So, if you're a Novolog user, you'd order the pump bodies specific to Novolog cartridges.)
Breakdown of the components (3min):
But back to how much they've cut out... I changed my site on my third day. That's it. Just the site on my skin without the tube. That's all I've done. It's still ticking away on day 6. I'll use the last of my 300(+)u cartridge today and change to a fresh pump body/cartridge/tube today.
Snap weighs less than these, but is longer.
Also, I have a ridiculous number of insulin pumps.
I had a really engaging visit to their office and talked at length about what I love and hate about the many pumps I've been fortunate enough to have the opportunity to try.
from left to right: Omnipod UST400, Cozmo 1800, Snap, t:slim
Ken El-Sherif, their VP of marketing, explained Asante's philosophy to me about their wanting to help patients think less about their pumps. I met with Mark Estes, Chief Product Architect, who answered many of my concerns specifically. Who better to ask about design features than the chief designer?
What I loved about the tslim is the carb calculator that totals the carbs as you enter different foods, I'd say. We've got that, said Mark.
Video of me programming a bolus (~2min) while using the carb calc feature:
What I loved about the Cozmo was that it would keep track of missed insulin if I told it I was disconnecting, I said. Snap does that, he showed me. (It doesn't yet prompt you to ask whether you would like to take it. I look forward to future iterations perhaps populating the prompt with the missed basal value and asking if I'd like to take it and then not counting it against my IOB. For now though, it's enough that it tells me I missed 0.3u in the 19 minute shower I took. I likes keeping up with my basal, people.)
I also love that the folks at Asante have developed a relatively simple occlusion detection system where the tubing meets the cartridge rather than relying on back pressure at the infusion site like a traditional pump. Anyone who has had as many occlusions as I have (again, thinking of tslim and Omnipod) can appreciate detection earlier in the delivery process. This is a huge selling point for me. I want to know that the pump detects that it can't deliver insulin - not that it may or may not have partially delivered what I asked it to before it realized something was amiss.
An interesting feature for those moving to Snap from other pumps is that Snap calculates your IOB however you and your healthcare team prefer. Do you like the Minimed/old Omnipod model for IOB where only correction insulin is considered? Done. Prefer the Animas/Cozmo/Tandem/new Omnipod way of including your mealtime insulin? Done. It's in the pump settings.
In many ways, the menus feel Medtronic-esque. As I haven't been on an MDT pump in 6 years, I find myself thinking, where would ___ be on a Paradigm? And there it is. I had been enjoying more screen since leaving Medtronic for Cozmo/Omnipod/Tslim, but Snap uses their small screen efficiently. It's clear to read, low resolution (my husband explains to me that this saves their device a ton in battery), and I can read it fine in broad daylight. Still, the low res screen is NOT sexy. And the colors of the controller (currently dark blue, black, or a light red) don't excite me either. I'm told some brighter colors are coming our way (green, magenta, etc). I've done a decade on black pumps. Give me something that will whistle back at my pink Dexcom.
Hey girl, did your standard deviation fall from heaven or do you just have great control?
Speaking of playing nicely with integration, it's in the future, as with all their competitors. The graph screen that is currently kind of useless - overwhelming with symbology and axis information that I'm likely never to access - is a great placeholder for integrated CGM data. On the software side, they are first focusing on programs that clinicians will use to upload data in an office setting - programs like Diasend. I'm hoping that they make good on their talk of interoperability so that patients can find software that will provide useful data and, more importantly, be user friendly.
Graph of...monster teeth?
The pump is indeed feature rich in terms of operations and doesn't lack any smart pump features that I can think of beyond perhaps bolus/temp basal presets. It's also operable, however, for people who might want much less in a pump. Since you can choose to have the shortcut key function operate EITHER an audio bolus or prompt your "smart bolus" (bolus wizard), it seems designed for either the crazy calculators like myself or the set-dose brand-new-to-pump crowd. You can choose to bypass smart bolus (bolus wizard/calculator) capabilities and just do a "now bolus," too. But I was able to easily run a combo bolus for my correction plus BBQ burger and fatty onion rings (over a 3 hour period) the other night and also still layer a now bolus during its run to accommodate something else I ate. I think the hardest part for me so far is remembering each company's fancy term for their boluses (now/timed/combo vs standard/square/dual wave vs...).
I've grown accustomed in the last year to having my IOB in my face. Tslim and Omnipod both show you IOB on your startup screen as soon as you wake the pump and respond to the key sequence or confirmation screen, respectively. I'd like to see Snap's IOB more obvious. I have to wake the pump from blank screen (just like with other pumps) but then click status and then click one more screen (screen 2 pictured below) to see my IOB. If they could cut that by a button press or two, I'd be happy.
Taking you through the status screens.
Since I have been trying to log my data more (using MySugr), I find myself using the logbook screens often as I go back and add my recent temp basal or boluses to my app. The logbook doesn't currently remember your position if it times out. I'm hoping they can extend the timeout screen for this feature. I'm a slow data entry monkey. A data entry...panda.
Temp basaling is easy. No, it doesn't have presets (also no bolus or carb presets). It uses a positive percentage method for temp basal and calculates and presents what the rate is actually changed to. If I go in knowing that I want to run approximately 30% of my .95u/hr basal, I can make changes down to .05u, so it allows me to choose values like 37% (.35u) or 32% (.30u) or 26% (.25u). On my status screen, I can see time remaining. To cancel the temp basal, I go back into the basal menu. (I keep wanting to find it in the stop menu.)
I really like the alerts that Snap offers. My favorite is that, if you turn on BG prompt in your setup, it will ask you if you'd like to be prompted to check BG in the time you chose when setting up the device. Unlike what I remember with Minimed or Cozmo, it won't just automatically remind you at the ___ hours past bolus mark every single time you bolus. If I'm correcting a fasting in the morning and plan to bolus for my breakfast about an hour later, I don't need a prompt for three hours from now. At lunch however, a reminder to check in post-meal during that long stretch of afternoon is handy. So I can just click yes or no when it asks if I'd like a reminder. Too annoying? You can turn the feature off entirely.
Key beep volume is adjustable, alert tones are pleasant and designed to be heard in a range of frequencies. Innovation alert: The pump will actually alert you if it detects that it has suffered damage from a drop, from water seeping into the housing, or if the controller and pump body are separated. Also, expect a persistent (and growing in volume) alarm if the cartridge is empty.
And if you need a replacement controller (the non disposable portion), you can save an old pump body and instantly program your new controller with ALL of your settings just by - yeah, you guessed it - "snapping" it on.
Snapped and Unsnapped.
Waterproof? Always a big question. It's accidental dunk proof, but not recommended for submersion. With my tslim, I never felt comfortable taking it in the water. Cozmo, I've showered with, but honestly, it's my personal preference to disconnect. I lost a pod in the ocean in the Bahamas on our cruise in October and remembered why it's nice to have my pump tucked safely away in a beach bag or cooler.
Bren Kern, Asante's Director of Manufacturing, gave me a tour of the rooms with the gadgetry where people smarter than I put the devices through extreme conditions and make adjustments. I saw their production lines, their post-production testing area, and from a distance, their sterile areas for assembling their infusion sets (6 or 9mm cannula, short or long length tubing, angled or straight insertion options). I'm a 9mm, short tube, straight set girl. (And I like my coffee with Splenda and cream.) They make all the parts in house and ship through their distributors.
Oh, and it has a flashlight on it! Its purpose is to illuminate the infusion set to see that the pump indeed primed itself in the time it takes to screw on the cap. But it's also good for finding lost toys under my nightstand.
As you can see by now, I will try any pump. And I will try to find what I don't like about it. So far, what I dislike the most about Snap is that there is no quick way to put the pump back into its offscreen/sleep/blank screen position. If I've followed a menu series down a rabbit hole, I might have to click exit, exit, exit, exit to turn off the screen to slip it back in my pocket/the leather case/the belt holster.
Leather Holster vs Pump Clip - both w/ vertical/horizontal options
That reminded me of Medtronic - Act and Esc. While the tslim frequently put itself to sleep even when I didn't perform the double tap that turned off the screen (way too sensitive, I pressed once, I swear!), and Omnipod's power button is buried under 12 feet of plastic (why you be so hard to press, Omnipod?), I do love the buttons on this device. Punchy and plastic like my microwave display panel. A little like Verio IQ. Responsive. And re-assigned according to the on-screen menus like the Omnipod where they have different functions depending on where you are. The left and right buttons either scroll you through menus or +/- your BG/carb/dose values as necessary. The three horizontal buttons usually offer some kind of Act/Esc yes/no select/back binary option unless the far left button is needed for a third feature. They don't have the hardness of Cozmo buttons or the great rubber buttons of the Animas, but they scroll quickly, stop on a dime, and feel good. (I think about buttons a lot. Do you know how many freaking buttons I press in a day?)
Snap and the One Touch Verio IQ
What I like best may very well be the ease of changing that I poopooed. Break out the pump body, snap a cartridge in, screw on the cap, and boom, your pump is already primed. No fill needles, no cartridges, no priming.
Cartridge change procedure explained (42sec):
Low profile packaging (unlike Tandem and Medtronic) means less to carry, too. And a tiny glass vial that I can easily draw from with a syringe in an emergency? Again, awesome.
All you'd carry with you would be a spare cartridge,
spare set, & spare pump body (clockwise at 12, 1, and 2).
I'm going to enjoy finishing out my trial of this device (probably 24 days all told with my insulin usage). I think this company is doing some innovative things with design and certainly breaking me out of my paradigms (pun intended) about pumping with asking me to do so little to keep it up and running. They also don't want to make customers wait for their newest/latest/greatest. If they improve the pump controller (the only non-disposable part) or update the software or offer a bold new color, it's $99 to get whatever the new version is. (That's a philosophy that ought to please still-angry Podders.) It's also a very low startup cost with higher supply refill costs, much like Omnipod.
I plan to subject Snap to Thanksgiving dinner on Thursday. Oh the boluses. I bet that 300u cartridge of Humalog runs out sooner next week than it did this. :)
If you're interested in doing a trial like I'm doing, it's as simple as going onto their website and filling out a trial request.
Sometimes the pieces fall in front of you in a way that shapes your path.
Being a sedentary adult had nothing to do with my diagnosis as a child with Type 1 Diabetes of course, but diabetes with the accompanying fears of hypoglycemia and the stress of managing glycemic control during exercise has everything to do with my being a sedentary adult.
The Diabetes Hands Foundation's community TuDiabetes.org helped me understand that I was not the only one struggling with my diabetes when I joined the social network in 2008 and has much to do with my two successful pregnancies and my outlook on diabetes today.
DHF's program Diabetes Advocates has allowed me to become a voice for patients and those touched by diabetes, and my blog Sweetly Voiced has allowed me to extend my reach and tell my story.
But something has been missing. I've still been afraid of exercise. I make a lot of excuses. I am afraid to do it alone, clueless as to how to accomplish being active while caring for two kids under the age of 4 at home alone all day, and always confused about how to manage the delicate balance of insulin and activity.
DHF has another program though - the Big Blue Test - which has proven to me that just a FEW minutes of activity can lower my blood sugar. Type 1 diabetes is incredibly challenging, sure, but if I could take a little less insulin, I'd have fewer hypo excursions. And if I could make my body just a little more efficient, I could have fewer hyper excursions. Just a little.
For the next 5 weeks, I commit to walking 10 MILES a week. Though it will likely be a well-worn route to and from a local park with my little ones, it will be an emotional journey, a physical challenge as I avoid hypoglycemia (while pushing a double stroller) and as I learn what does and doesn't work in my planning, and it will be the very first time I've done something else - ask for your support. Yes, you.
As I walk these 50 miles, I'm asking my friends, family, and acquaintances to help me reach my goal of raising $1,000 for the Diabetes Hands Foundation. For every dollar I raise, that's another dollar that we at the Foundation can put toward reaching more people who used to be like I was, helping more people who are just like me, and amplifying the efforts of those who are committed to making the world a better place for people who are struggling.
Will you help me put some miles on these bad boys?
Friends keep telling me how easy living gluten free will be for my little one. How manageable. How it will get easier in time.
Family seems focused on what she can't have. How deprived the poor thing will be.
This is all strangely familiar.
Aren't these the same comforts and comments we offer to those newly diagnosed with diabetes?
Going gluten free is not something I've been stressing over. If anything, I feel guilty at how fascinated I have been by the process. I've segregated my kitchen into gluten and non-gluten areas, I've found suitable substitutions for most of the foods she likes, I bought her her own toaster, etc. Truth be told, she avoids most gluten items anyway unless they are particularly sweet or salty.
I'm not afraid of reading labels (I already do that), I'm not afraid of educating future teachers (I have plenty of experience there). I already cook all of our meals at home (recipes to come, y'all).
I don't believe that my child will feel deprived. I don't think she'll suffer; as a matter of fact, I think she'll thrive and blossom on the new diet. I don't believe that complications from the disease are inevitable. I'm a realist, but never a pessimist. And celiac is largely an uneventful disease, much like my vitiligo (which I suspect she also has, for what it's worth).
I think I've raced ahead to thoughts that are hard to articulate.
In the beginning, diabetes seems like it will be about the needles and the test strips and the weighing and measuring of meals. It ends up being about something entirely different.
Diabetes is so manageable, people assure you. It will get easier, they promise. In the case of diabetes, these are little white lies we tell to offer comfort.
Autoimmune disease, though, is about living on edge. It's about feeling a little damaged. It's knowing that your body betrayed you and it's about suffering consequences every time your disease reminds you of its presence.
I don't know that I can make you understand the part that actually bothers me about my daughter being diagnosed with celiac disease. It's certainly not the condition itself (which she calls "silly act").
There is a Discussion That Must Not Be Named. We, the "damaged" parents, speak of it in private phone conversations, direct messages, close circles of confidentiality. We don't talk of it openly and we assure one another we shouldn't entertain these thoughts. These thoughts...
This thought:
My child inherited autoimmune disease from me.
I couldn't protect her. I breastfed her for 18 months, I introduced gluten while breastfeeding, I delayed dairy. I had a healthy pregnancy.
The hospital did force formula on her for five days despite my protests and tears. But really? It seems positively futile to place blame there. As my husband and I always say, you make the best decision you can make in the moment with the information you have.
This reality sought her out. It found her, despite how lovingly I wrapped my weak arms around her. It chased us down and wrenched her from me like a dark wind.
I wanted my kids to have only the best of me.
Yes, yes, it's "manageable." Livable. She will be "fine." She'll "never remember" a time she was celiac-free.
I know. (I should warn you that I genuinely don't accept comfort and support well. I will snap at you.) Yes, yes, I know. (Because I can handle anything.) Stop it. I get it. I mean, thank you. Of course, yes, we will be fine. Thank you.
I'm a support giver, not receiver. An information sharer. When I'm on the receiving end, I'm defensive and critical. It's not you; it's me. Seriously.
I know we will thrive, regardless, but I can't escape the feeling that I've lost something. A game. A race. An opportunity. A degree of innocence.
I also know that I can't know. I can't say definitively that it will end here, with this diagnosis...I can't see whether a more vicious autoimmune disease (like my own) lies around the next corner. But I can hope this is the last of it. I will keep my head up and ride on, chased by the wind.
I don't normally take both of the kids to the supermarket with me. If you knew Lord Fussington and Lady Runsalot, you'd understand. But on Friday afternoon, I loaded them into the car for my weekly trip.
And on the way out, I stopped to check the mail.
Three envelopes. Addressed to myself, Sweetie, and Dibbs.
One envelope was thicker.
Like many of us who attended the Friends for Life conference, I took advantage of screening opportunities. I had a retinal screening for myself. I had the kids screened for type 1 diabetes markers:
Both kids tested negative this year. I found out a couple weeks ago. Whew.
And I had myself and both kids screened for the antibodies for Celiac disease, as well as for the genetic HLA markers for Celiac.
The screening day was an awful day - our worst at the conference. My daughter was cranky, tired, constipated, and in an overwhelming environment with lots of people. She had an epic tantrum with my husband in the lobby (in front of many people) while I attempted to fill out all of our screening paperwork with Dr. Fasano. I had to sit at a laptop and fill out the same multi-page questionnaire with hundreds of questions...THREE times. Once for each of us. My husband returned her to me and they were both spent. Worked up. Done for the day. That's the state we were all in as we dragged the kids in for the blood draw.
I went first. Easy peasy. But it took 3 or 4 technicians to hold Sweetie as they did the draw. She's super strong. She cried. She tried to get away. Having them do my son was even worse. He'd never ever been restrained before. I held his head as they pierced the crook of his pristine chubby arm. I held him still with every ounce of my strength, wrapped both arms and legs around his head and body...and I flipped out inside when they stuck the second arm to try to get enough blood.
When it was over, each kid got a stuffed frog and settled into the double stroller as we made our way back to our hotel room. They were immediately fine. Fully recovered.
I was shell-shocked.
I didn't say a word. Didn't want to talk to Hubster. My arms were stuck straight in front of me pushing the stroller, unbending, still feeling the muscles flexed as though I still held my son against me so he couldn't move. I got back to the room and just lost it.
I don't ever want to hold my own child down like that again.
But the kids? They were fine.
Dr. Fasano passed us in the hallway later that week and I stopped him. I apologized for my kids' behavior and for my nerves that day. Thanked him for the research he does on Celiac disease.
Nearly two months later, that thicker envelope happens to be for Sweetie.
On the outside, a woman approaching her medical team asking questions about pregnancy with pre-existing diabetes seems to be a confident woman, merely doing her due diligence in preparing for the toughest role in her future - asking the right questions, gathering facts, paving the way.
But on the inside, that woman is panicked. She has heard from some older relative about how she shouldn't "risk it." She has been told by some medical professional at some point that she'll have to have "perfect" blood sugars (really? perfect?). Dr. Google has thrown her hundreds of scenarios and "facts" and concerns.
What she needs from you, Doctor, is a careful and compassionate hand.
I had my kids at ages 30 and 32, but my journey toward getting pregnant started long before that. Long before that. When I was 24 and constantly butting heads with my endocrinologist, my friend Janet told me about her new doctor - a woman - who was very supportive of her desire to get pregnant. She said she'd switched from our endo (who had said "never gonna happen") and I jumped ship right along with her. I wasn't dating anyone, I hadn't yet met my husband, and my A1c was 8.6% - the lowest I'd seen in my lifetime - finally in the single digits.
Dr. M promised me that we would get there if that was what I wanted. And we started working.
Shortly after I was married at age 28, I saw my first A1c under 7 and I cried. Oh, how I cried. "I can do it," I told myself with magnetic poetry as I posted it on the fridge, July 2008.
I let my amazing endo guide me in all my steps. She told me which OBGYNs she had sent patients to, she moved me to the resident CDE in charge of the preggos, she called me personally to greenlight me when I hit the magic number of 6.1%, and she was this lucid, brilliant, strong voice of reason when others on my OB team demanded numbers and targets that were unrealistic.
She was the one on my team who told me that no one could isolate whether my ketones one evening were from dehydration, starvation, a bad vial, a bad site, or whatever and assured me that my baby would be fine. She was the eyerolling smartmouth who said that if I never went over 120 an hour after a meal (as my perinatalogist was demanding), I'd be "on the floor" by the end of my insulin action.
This is the kind of team you want on your side during a pregnancy and you have every right to that kind of care.
Care. Not scare.
On August 8, I saw what the alternative would have been and I have spent the last few weeks disgusted. Incensed. With an anger roiling in my stomach until it bubbles up into this post. I thought I'd wait until I calmed a bit, but I am more angry today listening to the archived video again than I was the moment I heard it live.
At the Friends for Life conference this year, Dr. Ben Szirth and a team of eye care specialists from the Institute of Ophthalmology and Visual Science from the New Jersey Medical School provided free retinal screenings for people with type 1 diabetes for the seventh year in a row. But this was my first time being screened at the conference.
I saw quite a few different people who all looked at my eyes at various stations and with various impressive pieces of equipment. It felt a bit like speed dating, going from chair to chair and talking congenially with pleasant strangers.
The first technician performed some basic eye chart style vision checks, having me stand at a distance and read the eye chart covering one eye, then the other. Pretty standard.
The second technician took some pictures of my retinas for the doctor to review. He showed me the photos and explained what he was photographing.
My third station included an autorefractor that I've seen at my usual checkups - you're asked to focus on an image of a hot air balloon while the machine measures your specific vision correction needs.
My next stop was to measure my eye pressure. I believe it's actually called a tonometer, but I have always thought of it in my head as "the air puffer thingy." I've often seen my eye pressure in the borderline high range (normal is 12-22 mm Hg). I'm usually 18, 19, 20. I don't know that I've ever seen above 21. The day of this retinal screening? I was clocking in 24s, 25s. WTH? We measured it again. Same. Hmm. Not pleased.
It had been a rough night. I'd had a pod malfunction that had sent my overnight blood sugar into the 400s. I had taken a correction injection around 3am and decided to deal with changing out the pod the next morning. By breakfast, I was down into the high 200s, and by my retinal screening at 10:20am, I was still floating in the 200s well above my target range.
I was then directed to the machine that measures the thickness of your retina. I've been going to the ophthalmologist for 17 years and I had never encountered this piece of equipment before.
Dr. Ben stood nearby to review the results and explained to me that this was a $50,000 piece of equipment that many of his contemporaries told him was unnecessary to bring to a screening like this...but I am so glad we had it.
289.
My right eye has always been my well-behaved eye. My right eye has always had clearer vision, fewer hemorrhages, lower pressure. But my retinal thickness on the left measured normal (between 250 and 280) and it was my right eye that was cause for concern. 289. Let's check that again. 287. Damn.
So what does that thickness mean? That's what this machine was able to tell us. He studied the image, focusing on the big black bulge in the middle.
