Wiping is Fun Again

I’ve always been a wiper.

Pants, napkins, the dark material of my glucose meter case. Never anything normal like an actual alcohol swab. And I’ve never been a licker, although I have many friends who are. I don’t judge them for their bloodthirsty ways, and I hope they don’t begrudge me my slovenly habits.

You’d think that if any aspect of diabetes management would be simple, it’d be what to do with the blood left on your finger after you test.

It was never really something I thought about unless I was around a lot of other people, or if I saw a D-friend wiping his blood in a different way. Or, if I was enjoying a bike ride by the sea in Key West and a swarm of ants streamed from my blood-encrusted meter case when I stopped to check my blood sugar.

But then one day, several magical packets of Diabetic Dabs arrived in my mailbox.

D_Dab_box

They’re these little sticky squares of sheets that adhere to the inside of your meter case (or Fossil makeup thing that you’re using as a meter case) that you can use to soak up leftover blood. Like a teeny-weeny stack of Kleenex made just for PWDs and their poor, leaky digits. Like little square maxi pads for your fingers.

(And despite the name “Diabetic Dabs,” they actually don’t have diabetes, as far as I can tell.)

I’ve had one stack stuck to the inside of my Fossil case for the past month, and I really do love them. I’m not just saying that because I got them for free.* (Karen agrees with me.)

My handy-dandy pad of Dabs, stuck to the (mostly useless) mirror on the lid of my Fossil case.

My handy-dandy pad of Dabs, stuck to the (mostly useless) mirror on the lid of my Fossil case.

The little sheets are insanely absorbent, so you barely even have to touch your finger to the sheet to get the blood off. And they don’t feel like another diabetes accessory that’s hanging around and getting in my way, because (unlike a lot of other d-things), they actually solve a problem. I feel like I’m actually doing a legit, semi-hygenic thing by using Diabetic Dabs, evidenced by the fact that I don’t have to check to see if anyone’s watching before I use one, they way that I used to do when I wiped my finger on my pants.

The one and only suggestion I’d give to the makers of Diabetic Dabs would be to make each Dab less absorbent and large, because I think I can make it another year and a half on the supply I have right now. Well, that and maybe make them glazed-doughnut-scented.

You, too, can be the proud owner of 200 Diabetic Dabs!

You, too, can be the proud owner of 200 Diabetic Dabs!

I was lucky enough to get a few extra packages of Diabetic Dabs, so if you, too, would like to experience the magic of not smearing blood all over your clothes or meter case, leave a comment here before midnight, March 4 and I’ll choose two winners and ship them off to you.

*The good folks at Diabetic Dabs were kind enough to send me free samples, but they didn’t tell me what to say. The above opinions are all my own. Bloody pinky-swear.

Like the Wind

I’m going to go ahead and bet that no one even remembers this, but about 300 years ago, I was blogging about running. I actually even ran about 12 or 13 times.

Running sucked, of course. But I loved it, of course.

I liked all the accessories I got to buy and wear. I liked my stretchy little belt that held my glucose meter and tiny boxes of Nerds. I liked the feeling of being done with running and then taking a shower and putting on sweatpants and eating hot food. I liked the methodology that was involved with working up to a goal, and seeing how each day got easier.

Things happened, though. At one point I hurt my ankles and had to buy weird black running socks, and I took a break. And then I started up again with the help of the awesome Mari Ruddy and Team WILD (RIP). And THEN I was unexpectedly pregnant, and my doctor wanted me to stop because I was new to running and my baby could have fallen out while I rounded a corner (or something). And that was TWO WHOLE YEARS AGO.

Grody.

Please look at all the cat hair on my poor neglected arm band thing.

There are a number of things that have kept me from starting right back up again. It’s easy to point to my kid as one of those things, but as others have demonstrated, it’s not impossible to make time to run when you have a wee baby.

If I’m being honest about my unhealthy thought processes, I’ll admit that a thing that holds me back is resentment.

Every time I pass a runner on the side of the street (and in my neighborhood, it’s dozens a day), I think: “I bet that person isn’t worrying about his blood sugar.” Or, “I bet she’s not carrying an arsenal of juice boxes and test strips.” “I bet that woman got home from work and decided to go on a run . . . and then she just went on a run, like her life wasn’t possibly hanging in the balance.”

I have friends who pop up at the break of dawn to walk a few miles, and I’d love to go with them, but I’m afraid of waking up at 72 or 243 and then having to decline because, hey, I have diabetes and as much as I like to pretend it doesn’t affect me, it does. I’d have to stay home and eat, or bolus and wait. And probably bolus again and wait some more.

I know that it’s dramatic, and that I’m probably making more out of it than I should, but good God I hate being low, and that is a feeling that I directly equate with exercising.

My time doing the Team WILD thing (and, you know, all my other D-friends who are successful athletes) prove that it can be managed. I used to check 4 hours, 3 hours, 2 hours and one hour before heading out for a run. Then during the run. Twice. Then after. And I got good at it! I know it’s possible, but when I’m in the throes of self-pity, it’s another thing to get pissed about, and another reason to just hang out and watch Jeopardy after I get home from work and feed and bathe the Magpie.

Because just as quickly as I can recall the feelings of strength and freedom and pride that I associate with running, I can remember what it’s like to be 2 miles from home, weak and nauseated and crippled with cold sweats, worried that I’m going to lose consciousness on the side of the road because I didn’t pack enough glucose tabs or jelly beans to save my life and negate the calorie-burning benefits of exercise. How tragic I would look, laying there in my weird black compression socks, surrounded by empty Nerds boxes and trying to explain myself to the EMTs: “I’m getting healthy!”

I know the nagging fear — or the diabetes — is never going to go away. I just need to learn to manage it. Deal with the repetitive finger sticks and temporary basal rates and nauseating amounts of granola bars. I need to look it straight in the face, and then run. Far, far away from it.

Things that Happened at the Medtronic Diabetes Advocate Forum

If I could solve the problems, what do you think I would be?

One stupid seagull picking styrofoam up out of the sea . . .

– Don’t Have Time, Liz Phair

Let me start this story by saying I’ve never thought of myself as a big joiner. I don’t generally get jazzed up about my ability to change the world. When I’m faced with challenges — no matter how important or widespread they might be — I’m tempted to curl up in a ball and hide and cry. Doing things can be scary.

I was kind of scared to even attend the Medtronic Diabetes Advocate forum, which took place January 9th – 11th at the Medtronic Diabetes Headquarters in Los Angeles. As I boarded my flight (which, along with food and accommodations and a nice water bottle, was paid for by Medtronic and Bayer), it occurred to me that I hadn’t really been keeping up with others’ blog posts and other happenings in the Diabetes Online Community. I’d seen a partial list of the DOC members who’d be in attendance, so I knew I’d be among people who made a habit of getting shit done, and done well. I wondered if a 4-hour flight was long enough for me to reinvent myself as a true advocate. Or at least someone who gets around to updating her diabetes blog more than once a month. Ahem.

But enough about me and my neuroses — that’s not what this forum was about. It was about all of us, together. And it was an open conversation from the very first moment.

After a warm welcome and a chance to meet some Medtronic executives on Thursday evening, Friday started bright and early. We heard from Katie Szyman, Senior Vice President and Group President of Medtronic Diabetes, as well as Mark O’Donnell, Vice President of Regulatory Affairs, who discussed the “Road to the Artificial Pancreas.” This was a brave idea, and a good one; I think all of us were chomping at the bit to discuss the mistake that Medtronic made when it labeled the 530G with Enlite an Artificial Pancreas. (More about that here.) 

“We heard you. We got it,” Mark O’Donnell reassured us at the outset, and there was a substantial discussion about FDA codes and semantics and approval processes and marketing. I am pretty much convinced that Medtronic recognizes that mistake, and that they’ll be careful with any new products that hit the market between now and the arrival of the real artificial pancreas. The key, as someone suggested, is making sure there’s no “but” or “except” in the explanation of the product. At one point, Katie Szyman flipped to a slide in her presentation that outlined a Closed Loop system. It was a Closed Loop, except the wearer of the system would still have to calculate carbohydrates and dose for meals. (Read: not really a Closed Loop.) It was a good example of how not to identify the next big thing, and we were sure to say so.

A comparison of the Enlite sensor and the Sof-sensor, up on the big screen.

A comparison of the Enlite sensor and the Sof-sensor, up on the big screen.

Improvements in sensor accuracy and insertion pain were addressed as well — both were major issues for me with the use of the Sof-Sensor, and I haven’t tried the Enlite sensor yet. Also, SO MUCH SCIENCE. Percentages and acronyms and graphs that showed little blobs of things floating around in other things with arrows pointing. It reminded me of how I used to want to brew my own beer and start a brewery, and then I saw how much chemistry was involved and realized I would probably be better off just drinking the stuff. I’m not kidding when I say it looks like it takes a PhD to work in Medtronic’s marketing department.

The rest of the morning and afternoon saw breakout discussions of Medtronic’s new StartRight program, which is a pretty cool initiative designed to help keep patients comfortable and confident with pump therapy. It’s something I definitely could have benefited from when I got my little blue 508 14 years ago.

We also had a lively discussion about social media as it applies to saving the world, especially when it comes to helping People with Diabetes.

Bennet and George and Scott, running the show.

Bennet and George and Scott, running the show.

It all kind of pales in comparison, though, to what we heard from Dr. Francine Kaufman on Saturday. Her talk came right after a discussion about reimbursement issues and the barriers to diabetes care that insurance coverage (or lack thereof) can present, so I was already all riled up about kids on Medicaid not getting the tools they need to stay healthy.

Dr. Kaufman is a damn genius, and is insanely passionate about diabetes care for children. Her presentation detailed her own (and Medtronic’s) efforts to improve the levels of care for people with diabetes in Haiti and Kazakhstan, among other countries. I don’t even know how to recount everything she told us, but there are a few parts of her story that I don’t think I’ll forget:

  • That Type 1 diabetes has an 80% mortality rate in Haiti, and that most children with the disease don’t even get diagnosed.
  • The story of a girl in India whose parents, upon her diagnosis, were told to “let her go.” She’d lost her worth. (Happy ending: her parents took great care of her and now she’s a kick-ass grown-up.)
  • Patients in developing countries who struggle to manage their disease with a different supply and type of insulin from day to day — and sometimes nothing to even inject it with.
  • A picture of a small, undernourished child on a hospital bed. “This is what diabetes looks like in Haiti,” Dr. Kaufman told us. “This child died.”

A box of tissues made the rounds, and I felt like a jerk for every time I’ve ever complained about itchy adhesive or how inconvenient it is to wear a dress with my pump.

The rest of the day (and the conference) was when things got real. Fueled by an unlimited supply of Diet Coke and free snacks, plus a few hours of coaching by David Lee Strasberg, my DOC cohorts went to town. Seriously: a plan took shape right there. The second iteration of the Spare a Rose, Save a Child campaign, which benefits Life for a Child, was the focus. How could we expand on last year’s success? Who could call whom? Can someone design a certificate? Can we get someone to match our donations? How do we go beyond talking about this and actually get it done — on and offline?

And that’s when I realized that I could be a real advocate, even if I haven’t read any blog posts in a few months. Because it wasn’t just me. It was all of us. We need each other’s encouragement to keep going with diabetes, but we also need it to help people we don’t even know to keep going with diabetes — even if that just means staying alive. It’s hard to curl up in a ball and cry in the corner when you’ve got 20-something people egging you on to do stuff, inspiring you with their humor and their kindness and conviction and resources. And it doesn’t hurt when you have the support of a company like Minimed behind you too — asking for the input of the whole DOC, and listening with open ears.

Here we all are!

“And now after some thinking, I’d say I’d rather be
A functioning cog in some great machinery serving something beyond me

I’m tongue-tied and dizzy and I can’t keep it to myself
What good is it to sing helplessness blues, why should I wait for anyone else?”

– Helplessness Blues, Fleet Foxes

The Diabetes Mafia

Twenty-three years ago today, I was beaten into the diabetes mafia by a bum pancreas and an angry, needle-wielding nurse. If the last several months have taught me anything, it’s that there’s no easy way out of that club; there might be no way out at all.

Diabetes is everywhere! Food has carbs! Blood must be drawn/shed! Pumps need to be programmed and test strip prescriptions need to be refilled! People with diabetes are everywhere — not just on the Internet!

You can pretend to be taking a break from super-duper-crazy diabetes management and DOC saturation, but you’re not really. All the time you think you’re saving by not doing those diabetes things? You’re spending it thinking about doing those diabetes things, and feeling weird for not following through.

A few weeks ago (holy shit it was actually early September), my husband and a couple of friends and I took part in a neighborhood trolley bar crawl experiment thing. It was great. The trolley we boarded near our house was crowded, and the going was slow, but it had just stopped raining, the sun was setting, and everyone was being super nice to each other. We’d travelled about four blocks on our trolley when I felt a tap on my arm.

“Is that an insulin pump?” a girl near me asked.

“I have one, too,” she smiled, digging a near-identical MiniMed pump out of her pocket. And we all know how the rest of the conversation went. She and I talked about different models of pumps, how cool it was that we were right next to each other, CGM pros and cons, diagnosis dates, infusion sets, and what we were eating that night. I didn’t get her name, but I did get a picture of our pumps together. Naturally.

Pumps on a trolley!

Later that evening, we were eating at a restaurant where we ran into a neighborhood friend. My husband told the story of the time we saw that friend at a bar, and how he mentioned that he knew all about my insulin pump because he knew a girl named Kerri when he lived in Rhode Island who also had an insulin pump. (That was one of the most surreal conversations I’ve ever had.)

“Damn,” our dinner companion said. “It’s like you’re in a gang. You’re in the diabetes mafia.”

I thought it was pretty funny at the time, but I can’t stop thinking about how right he was. Like it or not, I’m not getting out of this situation alive. And I don’t just mean the carb counting and blood sugar testing. I’m talking about the things that get become a part of your brain once you’re a part of the diabetes online community. I can’t meet another diabetic and not jump up and down, fueled by a mix of excitement and recognition. I can’t watch national disasters unfold and not wonder how people will get their insulin. I can’t not go out and celebrate my 23rd Diaversary, and when I do, I certainly can’t not take a picture of the delicious beer I’m drinking and I can’t not post that picture on Facebook.

diaversary

I can’t not bolus for (and worry about) the carbs in that beer, and I can’t not wish I was surrounded by all the cool people this disease has brought into my life over the last two decades — especially the last few years.

I’ve been in it long enough to know that half-assing it is almost harder than going all-in. It’s just part of being a member of the diabetes mafia.

Goodbye, Old Friend

Friends, family members, endocrinologists and pharmacists, entire Internet:

It is with mixed feelings that I come before you today to say farewell to an old friend. Writing this is difficult, but it helps me reflect on the time we spent together; the memories we’ve made.

My medical alert bracelet and I met back in 1992. Yep, over 21 years ago. I was a teenage girl, freshly diagnosed, relying on things like NPH insulin and syringes, exchange lists, and large, unattractive glucose meters to manage my diabetes. Back in those days, most things related to diabetes management were quite ugly, so it was with a sense of resignation that I started my relationship with this plain old thing.

Ye Olde Bracelet

Ye Olde Bracelet

I remember the day it arrived in the mail. A little big for my impossibly tiny wrists, but it would do, and I’d grow into it. Shiny in that surgical way, and far from fashionable. I hoped nobody would notice it — unless I was unconscious.

Oh, the adventures we had. Ol’ bracelet helped me finish out middle school. We did the high school thing together, and my trusty bracelet never said a word when I ate those contraband peanut butter cups at almost every lunch during 10th grade. We made the switch from private to public school, and while my wrist would crowd with all sorts of beaded, braided, and bangle-y jewelry, my alert bracelet was always content to play back-up.

Call Collect? Who's Collect?

Call Collect? Who’s Collect?

I’d be lying if I said I wore my bracelet every single day during those years. But when the wearing of a bracelet became a condition of my insulin pump acquisition, we grew even closer. Inseparable, even. My bracelet was there for those first terrifying infusion set stabs, cheering me on the whole way.

We moved back to Florida together, and as we drove, I hung my left forearm out the window so that she could feel the ocean breeze through her stainless steel links.

My bracelet was there for my first date with my husband, and joined me at the altar for our wedding. My bracelet was there for the birth of my child.

We travelled the world: Spain, Greece, the Czech Republic. New York City. Daytona.

But now we’re at the end of the road, dear stainless steel bracelet of yore. It’s time for you to take your place in my jewelry box — right next to that big plastic bracelet I bought at Target in 2007 and the extra buttons that came with these Ann Taylor pants.

Ta-dah! Love it.

Ta-dah! Love it.

Today, a new age dawns. I march into the world with a Lauren’s Hope bracelet on my wrist. For so long, I’d resisted the urges to get a new bracelet, even as I admired the ones worn by my friends at Friends For Life. I was afraid they wouldn’t serve their purpose. I envisioned a worst-case-scenario in which I lay unconscious and seizing on a hot sidewalk, finally approached by a group of EMTs, who glance at my wrist and think, “Nice bracelet,” then have me arrested for public intoxication.

But this bracelet’s different. Decorative, but not showy. Flowery, but not too girly. Beaded, but not bedazzled. This bracelet means business, but it also enjoys a nice meal out fine red wine.

I’d like to think you were something of a good luck charm, old bracelet. After all, you never really had to do anything. No one called the collect phone number engraved on your underside. You never even got to meet any handsome EMTs or firemen.

You’ll always have a place in my heart, old bracelet. Just not so much on my wrist.

 

Disclosure: The kind folks at Lauren’s Hope let me pick out my new bracelet and sent it to me in exchange for this review. They also sent me a box of baby hedgehogs, but I returned them. Too spiky.

 

Things I’m Running Out Of

1. Test strips, usually. Ever since I went back to a non-pregnant-person’s blood sugar maintenance schedule (5 times a day instead of 10+), my pharmacy’s gotten very sneaky with the way they fill my prescription. It says to test 5-6 times per day, but I’m only given 100 strips for an entire 30 days. So even if I do the minimum, I’m still 20 strips short. They’re charitable enough to refill the prescription before that 30-day period is up, but that means I have to pay an extra copay.

No.

No.

I imagine there’s a way to address this, and I imagine that way takes a half-dozen phone calls, some faxing and complaining, and a bunch of energy I don’t have. Which brings me to #2.

2. Time. My entire life I’ve heard the grown-ups say things like, “There just aren’t enough hours in the day,” and I’ve always been like “You’re RIGHT! I’m so busy and I have all these things to do!” LOL, as the kids say. I was wrong. Now there really aren’t enough hours in the day, but at the same time I’m very excited for each day to be over, because at least then I get to try to sleep.

3. Infusion set sites. Thanks to some miracle combination of breastfeeding and having no food in the house (see #4), I weigh just a few pounds less than I did before my pregnancy. I’m happy about this, except for the fact that the cannulas on my infusion sets are too long for my diminished fat stores. So now I get an extra pinch with each infusion set placement, and a lot of unpleasant sensations each time I give myself a bolus. There’s some scar tissue building up around my belly, too, so I’ve turned to my hips and legs and arms as alternatives. Unfortunately, those sites leave my tubing much more prone to baby tangles.

4. Food. Diabetes-friendly recipe this! Whole foods that! Low-glycemic-index high-fiber blah blah protein quinoa yogurt hummus smoothies! How about we order pizza for dinner, and then have that pizza again for breakfast and lunch the next day because I don’t have the time (see item #2) to go to the store for anything besides baby food in a pouch and Diet Coke? Okay? Okay!

5. Patience with myself. My daughter’s first birthday is quickly approaching, and I still haven’t finished sending out thank-you notes for the gifts we received at her shower. Last week I totally forgot I had a presentation until 45 minutes before the presentation — which was 45 minutes away. The week before that I skipped a doctor’s appointment because I completely lost track of which week it was. I’m losing my mind and I don’t even know where to start looking for it.

6. Space on the porch. Any time I’m asked to call to mind my happy place, I think immediately of the pool at the little hotel we’ve always stayed at in Key West. It’s a small, calm oasis where you float on your back and look at the sky while you wait for your husband to throw you a can of Miller Lite from the porch of the room you’re staying in. Anyway, the pool deck is surrounded by solid walls of out-of-control tropical greenery with iguanas hiding inside. My current goal is to get our front porch and back deck as close to that state as possible. I’ve got my beloved lemon ball, some ferns, a few cacti, Philodendrons, calladiums, and some tropical looking tree of unknown origin.

Plant by plant, I’ll just wall myself in with my pizza and my baby and laundry and used test strips. God knows I’ve got plenty of those.

I miss you, Key West.

I miss you, Key West.

Forgetting About It

One of the diabetes things I complain about the most is the fact that it’s an unforgettable disease.

From the piles of used test strips in my purse to the CGM alarms and daily low blood sugars, I’d guess I think about diabetes about once every 30 minutes. At least.

Lately, though, I’m struggling to keep everything where it should be — especially my A1C — and I find that my biggest hurdle is the fact that I’m forgetting about my diabetes. Not that I have it. Just that I need to take care of it.

It’s funny, because I think a lot of people — myself included — have this idea in our heads of what a slack-ass diabetic* looks like. (Mostly because we’ve been there.) We envision poor control as something of a voluntary action, a decision that’s made.

“I should probably test before I fall asleep, but I’m tired and I feel okay, so screw it.”

“I know my blood sugar’s already high, but everyone else is eating pizza, so I’ll have some too and just SWAG the insulin dose.”

Then there’s me:

“I just had two pork tacos and a beer and I never unsuspended my pump from the low I had three hours ago. Oops.”

Sometimes there’s just too much happening. On this particular pork taco day, I was visiting the Zoo with my husband and my friend and my baby. We were at a special garden festival, surrounded by food trucks and live bands and exotic carnivorous plants. I didn’t make a conscious decision to leave my pump suspended while I explored the rows of potted bromeliads and Venus fly traps, I just happened to go, oh, 35 minutes without diabetes right at the forefront of my mind. And as a result, my blood sugar jumped into the 200s, just like that (I’m snapping here).

The highly distracting Lemon Ball plant I bought at the Zoo.

The highly distracting Lemon Ball plant I bought at the Zoo.

That’s the really sad part. I wasn’t at my own wedding or preparing to jump out of a plane. It was just plants! A few fancy succulents were enough to screw up my afternoon, blood-sugar-wise. And little distractions like that take over all the time now.

It’d be nice if I could point to a single thing that’s led me to this place, but I think I’m just over it, to use a highly sophisticated medical term. Correcting the lows makes me too high. Correcting the highs makes me too low. I’m never just coasting at a comfortable 104. I spend so much time thinking about it and wishing I didn’t have to think about it that I inevitably just forget about it.

I catch myself wishing for auto-pilot, for blood sugars that stay stable after I eat and while I’m sleeping, with minimal effort on my part. Sometimes I want to forget about it, and then not feel so guilty when I remember. And then I realize that what I’m actually wishing for is a cure for diabetes. At least for a day, or long enough to buy a potted plant.

*Slack-ass is used here as a self-deprecating term. I’d never describe anyone else that way, but I can beat myself up all day long. Negative-Self-Talk-Fest 2013!