As a jaybird. (That’s a saying that I heard as a kid, and here’s the saying’s origin.)
It’s rare that I get to be completely naked. You know what I mean. No insertion set. No CGM sensor. Nothing extra to hold or unconsciously shield against doorway scrapes or zippers.
I change my insertion sets every three days and my CGM sensor every ::mumble mumble:: (as long as I can get it to last, but you know, officially it’s seven days…), so it’s not often that both attached to my body items are missing.
I had snuggled under the covers, having done my last BG check of the day and put my Dexcom receiver next to my head. As I slid my arm under my pillow, I felt the tape give way.
It was a beautiful run with this sensor (not just for the beautiful graphs for the past weeks, but accurate from start to untimely demise). Nighttime lows are becoming less frequent (and less severe) for me, although I tend to skim the bottom line of my low alert if I’m not careful. Having the Dexcom off my body at night is foreign these days, but I was cozy and comfy and sleepy. The Kid woke me up at 3am. She acted as my backup CGM (she just didn’t know it) and I sucked a juice box down and woke up at 74.
Raise your hand if you feel strange too when you rip that insertion set off your body before a shower!
There’s a moment of “I have nothing foreign on or in my body.”
There’s a moment of “It’s just me.”
There’s a moment of “This is what it used to feel like all the time.”
Then there’s a moment of “I’m glad I have the tech that I do have.”
The stars align sometimes and I feel free from the physical burden of diabetes technology that keeps me safe and healthy and alive.
I also feel naked without them.
As a jaybird.
It is about his paucity of words and the emotions you must mortar into the cracks of his meanings.
It is about his inability to end a story (or even his life) with any hope or joy.
It is about his words that slip beneath my skin to leave me shivering.
It is about how I abhor reading the words he wove together and yet, a quote he gave has shaped my life and aptly explained my last few weeks.
Not Reading It Again
I was subjected to Old Man and The Sea twice in high school, pulling apart overarching themes and writing trite, hackneyed literary criticisms just like every other teenager. Why twice? Three high schools in four years means forced rereading of a few books. (MacBeth was a three time winner - middle school gave me a head start, Midsummer’s Night Dream was also twice, but thankfully, Crime and Punishment and a list of Russian names written down for reference was, thankfully, devoured only once.)
Upon reaching the third high school in January of my junior year, my English literature teacher handed the book we would be reading next. Old Man and The Sea. I handed it right back.
“I’m not reading it again. I’ve read it twice. Hated it twice. Dissected it twice. It’s depressing. Give me something else to read and I’ll do a separate assignment.” (Yes, even as a teenager, I was… is pushy the right word?)
So, my teacher brought in his personal copy of A Farewell to Arms by Ernest Hemingway for me. In retrospect, I think he did it to spite me. “Old Man and The Sea is depressing? I’ll show you depressing.” I read it and neared the end, clutching that tatter of hope his characters created for themselves.
Hemingway is an ASS.
If you were in my neighborhood as I read the last two pages, I apologize for the angry screams of: “COME ON! SERIOUSLY?! Hemingway is an ASS!” I stomped into class the next day, threw the book on my teacher’s desk, and muttered: “This sucked worse than The Old Man and The Sea.”
To this day, I have yet to read any of his other works. Don’t ask me to do so. There are many other pieces of literature that can depress me, but none with the compact, gut wrenching nature of his view on life. I get enough of that already from reality. (Lest you think I like sappy, happy movies or books… I abhor those, too.) One day, perhaps, I will have the strength and resolve to read the rest of his painful brilliance. For now, they wait.
But… he said something that, if I had any desire to tattoo my body, would be inked across my chest:
“The world breaks everyone, and afterward, some are strong at the broken places.” - A Farewell To Arms
Over the past few weeks, the world did its best to break us. Two weeks after meeting our high deductible health plan’s deductible, John’s company surprised a few people by laying them off on the last day of October. Surprise! Including John.
All of the benefits: medical, dental, etc. was terminated “on the last day of the month“. That meant that day. My supplies (and new Dexcom transmitter) hadn’t been ordered. And I couldn’t get them ordered in time before the end of the day. OK, I thought. Breathe. I’ll just order them all when we purchase COBRA.
We’ve purchased COBRA before, but when I called to find out the cost, it was outrageous. Laughably outrageous. The representative gave me this advice:
“Purchase everything out of pocket and keep the receipts; if the total for the month was higher than the cost of COBRA, go ahead and pay COBRA and you’ll get reimbursed.”
We started to investigate other options, including Healthcare.gov’s plans for our state and found that those plans were better - and less expensive - than what we were paying if you factor in the high deductible. Yes, I know all about the pre-tax blah blah blah, but it was frustrating to think that we could have avoided the shenanigans with medical decision making this year if we had just eschewed his company’s crappy medical insurance plan and gone with a marketplace plan.
The World Breaks My Technology
A week later, my Dexcom transmitter died. It was a slow death and I knew it was coming, but when it finally shuffled off its digital coil, it was still jarring. It also felt like it said: “HAHA, I knew you didn’t order a replacement before your insurance kicked it!”
I went without, reminding myself that I went without continuous glucose monitoring for years. Of course, every time I checked my blood sugar, all I could think was: “What would the arrow say?” Blood glucose checks increased, but I felt unsure. I felt high, but I was within normal range. I felt shaky, but I was slightly high. Adjust, check, adjust, check. I didn’t trust how I felt. For good reason.
Et tu, Brute?
Then, in solidarity, my insulin pump died. Four weeks and two days out of warranty. I hadn’t ordered a new one because… you know the story. Deductible. Crappy coverage. It happened on a Friday night while I was across the country, but if your pump is going to stop working, it should stop working while you are standing with other Type 1s at the Diabetes Mine Innovation Summit.
“What the hell? I can’t bolus. Look!” I showed the pump to the group and the troubleshooting suggestions started to fly fast and furiously. “Try this!” “Take the battery out and see if it will reset!” “Let it time out and see if that will do anything!”
“It’s says Button Error.”
The groan was collective. In the fifteen years of pumping insulin, I had never had a catastrophic failure. And of course, with my head being not in the game, when I packed, what was the one thing I didn’t bring? The back up bottle of Lantus. My head started to go down the rocky road of microbolusing or finding an open pharmacy or spending time on the phone with the pump company begging for a loaner when one of the people standing in the group who uses the same pump as I do said something amazing:
“I have an extra pump that I travel with. You can borrow it.”
Do you know how hard it is to program an insulin pump with tears of gratitude in your eyes? Less than an hour after the failure of my pump, I was pumping again. BG upon reconnecting? 126. (I thought I was high. I felt high.)
Fortunately, my blood glucose monitors are holding steady. They obviously hadn’t gotten the memo that John had been laid off.
Suck It, Hemingway
Ernest thrived on making people miserable and ending his stories on a sad, introspective note. I’m no Hemingway (says the verbose woman writing this blog) and so the end of the story will be a happy one.
- John recently accepted an offer for a better job - better pay, closer to home, doing what he loves.
- Because I had done homework on Healthcare.gov, I was able to look at the medical insurance offered and decided we would choose a marketplace plan that is more expensive, but has better coverage - way better coverage and NO deductible for durable medical equipment. (I did a lot of homework, calling an insurance specialist and getting the answers about insulin pump and CGM coverage. It does pay to do your homework.)
- The DOC (Diabetes Online Community) and the diabetes community are filled with amazing people. A friend sent me her transmitter and a few sensors to tide me over. I have had many others offer to help with supplies. I am a firm believer in paying it forward, but never expected to be the one receiving.
- The posts I wrote about U.S. financial assistance and programs for people with diabetes and if you are a Type 1 without insurance was meant to help others… but I reread my own words. Twice. Maybe three times. And unlike Hemingway, those words and programs that companies offer gave me hope.
So, Hemingway. You’re right… about (at least) one thing.
The world does break us all. And I am stronger in the broken places.
But unlike the old man and a solitary trek into the ocean to battle marlins and sharks and the metaphors meant to taken from your work, this part of my story ends on a happy note, filled with helpful people and a community that does what it can when it’s needed.
Over the weekend, I had the unmitigated pleasure of wandering through the de Young Museum in San Francisco.
Most of my time spent in places of curated beauty is one of breathless anticipation, rounding corners to discover new pieces of art that stirs up emotions deserving to be felt in raw form. I have my favorite genres and periods and tend to gravitate towards those galleries, but sometimes, as I wander through a room on my way to get to what I want to see, I find what I need to see.
Edmund Charles Tarbell’s The Blue Veil.
As I stopped to admire the piece for the colors and her captured solitary moment, I noticed the placard next to it held more than just the name of the artist and who donated it. It was this…
I have no idea who Jonah Copi is, but I’m grateful to him.
My diabetes community is my blue veil.
“I give her clarity
in a state of confusion.
I give her guidance
in a time of fogginess.
I am not only her veil
but her friend and protector.”
Sometimes we forget that we have a blue veil when diabetes becomes overwhelming.
And sometimes we lift that veil to allow others to step in underneath it to see our secrets and share in its comfort.
But this is what I know: my world is colored with the beautiful blue that symbolizes my community and my friends. And I wear my blue veil proudly and hope that I can protect it as well as it has protected me.
As November draws to a close and another “Diabetes Awareness Month” is on the books, the general public will go on to the next awareness campaign. I’m not angry or jealous, as we should all look to other communities with the same openness that we ask from them. I am just so very grateful that my blue veil will not disappear or leave me. It is always with me.
Even in a museum tucked in a corner, waiting for me to find it.
Being an e-patient is one thing. Being an actual patient is another.
My finger is detriggered. You would think that after four of these (actually five, but one got done twice) surgeries, I would remember that the healing process takes time…and painkillers are needed to do the exercises to get my finger to fully extend. What I do remember is that it is so important to do the exercises, as much as it hurts, because otherwise… you can negate the whole purpose of the trigger release.
It’s a few days post-surgery and The Kid has developed a fascination with my stitches. I have stooped to use them for bribery. “If you put your pajamas on, you can look at them.” Anything to speed up bedtime.
The world continues to revolve while I am recuperating, so as I gather thoughts about last week (I was up in DC and have a head full of good things to share), I’ll give you some tidbits that you should know about:
- Kim Vlasnik made me cry. Not the Victorian-dab-your-eye-with-an-embroidered-hankerchief quiet cry, but a keening, gasping, aching cry. Her MedX talk captured the essence of what endures beyond the physical and why our community is important. I want to thrust my iPhone at strangers and shout: “Watch her. Listen to her. This. This.”
- Like treasure hunts? The International Diabetes Federation apparently does and is giving prizes out as a run-up to World Diabetes Day (November 14th). Here’s the details. You get pins, bracelets, t-shirts, and bragging rights.
- Yes, it’s almost Diabetes Awareness Month. Much like every year, we will begin to see posts from well-known organizations about the disease and people getting angry that this building and that building won’t light up blue for diabetes when they lit up pink the month before for breast cancer. Here’s a tip: take that anger and put it towards what YOU can do to help raise awareness or advocate for you, your family, or strangers with diabetes in your community or your government. We can light a candle or curse the darkness. You pick. Don’t know where to start? How about here. Or here. Or create something all your own. Every voice matters.
- The World Diabetes Congress (which will be in Vancouver) is calling for abstracts, beginning in February. They are providing 100 grants to attend for individuals from all over the world, which includes the registration and travel costs. What’s my beef? You must be 40 years of age or younger. I’m sorry, but that’s NOT right. I get that there are bright, young individuals who have things to say and want to learn… but there are also those who happen to be over 40 (ahem) who also have things to say and want to learn. To attach an arbitrary cut off age like this is… unacceptable. Yes, I’m going to inquire. Yes, I have something to say about it.
- Heroes sometimes wear shaggy coats. A Sweet Life, one of the best diabetes community media sources, is fundraising with Marjorie. Don’t know who she is? You need to know why she’s important to every.single.one.of.us. - and then help support A Sweet Life.
Off to do my hand exercises, which makes me look like I’m trying to channel The Bangles’ lead singer.
Walk Like An Egyptian.
Today, I’m cleaning out my inbox. You’re welcome.
In no particular order:
- Nipro Diagnostics TRUE METRIX™ and TRUE METRIX™ PRO have been approved by the FDA. So what, you ask? Another meter on the market. Whoooppeee.
But here’s the interesting tidbit:
“…the clinical data demonstrated that the two meter systems exceeded the minimum accuracy criteria for the new, more stringent ISO 15197:2013 performance requirements for accuracy.”
You know how I feel about blood glucose meter accuracy. We need it. Better accuracy from our blood glucose meters, better accuracy for our CGM readings, better dosing and food choice decisions = better days.
This is from a company that offers relatively inexpensive meter and strips. The devices will be on shelves by Q4 of 2014.
- Close Concerns/diaTribe has it going on all over the place. I
strongly encouragedemand that you take a moment to check the following out:
Kelly Close, the woman I swear never sleeps because she’s so busy doing amazing things for the diabetes community, presented this at a recent FDA meeting a few weeks back. (Click on this link to get her insightful slide presentation… so worth going through… it totally surprised me, and I’m pretty jaded these days.)
And then, there’s the work that DiaTribe is doing for #dstigma (diabetes stigma). Those of us who live with diabetes have probably felt unreasonably stigmatized at some point, whether it’s with friends, colleagues, strangers… and they’re showing this to the public in hard numbers. They did a study, and here are the results… and I love the fact that they’re not just satisfied with dumping the results on our lap. We’ve got work to do, people.
- ACCU-CHEK® Aviva Expert meter is the bomb for individuals using MDI therapy with a built-in insulin calculator.
I got to see this in action at the AADE conference in Orlando and was blown away. While I use a pump that does the calculations for me, if I didn’t, this would be the meter I use. Imagine not having to do the math when you want to inject:
“If my blood sugar is 196 and my target is 100 and I’m going to have 48 grams of carbohydrates but I took a correction bolus an hour ago so I’ve got insulin on board….how much insulin should I take?”
It’s easier to ask what time the train will arrive. The answer may be just as elusive. But this meter will do it (but don’t ask what time the train will arrive).
It’s not available off the shelf - you will need to ask your medical team to get you one, but if you’re on MDI… whoa. Get one of those in your hot little hands.
- National Medical Device Curriculum - Stop whining about how complicated the FDA makes the process of getting a device approved and start figuring out why. (Look, I used to whine. Not anymore.)
What is it? It’s a learning pathway for anyone who wants to know what it takes to get a medical device approved by the FDA, starting from scratch.
The National Medical Device Curriculum is a series of fictional case studies designed to help academic institutions and science and technology innovators understand FDA’s medical device regulatory processes. The FDA believes that better understanding of regulatory processes will accelerate the delivery of innovative medical devices to patients.
Regulatory pathways, PMA, 510(k), acceptable risk… it’s all covered with case studies. So worth your time if you are using ANY medical device to manage your diabetes.
Take a gander. Bookmark it. Share it. Discuss it. The more educated we get as a community about what the FDA does, the more we can help the FDA and device manufacturers with the process.
Thank you for helping to clear out my inbox. I feel so much better now. Do you do windows, too?