Crashing The Diabetes Bike

bicycle-1515716-640x480I’m about five days into my MDI adventure (Tresiba and Novolog flex pens) and well… from the title, you can guess how it’s going.

It’s a little bumpy.

It’s not Tresiba’s fault. Or Novolog’s fault.  The flex pens are amazing (once I learned how to use them!) and throwing them into my purse along with the rest of my gear is simple.

It’s having to learn how to be a person with diabetes all over again in a more “traditional” sense. Not that I was sloppy, but I would casually bolus for meals and figure if I saw a rapid rise, I could dose a teensy bit to bring it back down within range. I would guess at carb counts, figuring I could always adjust later. Adding Invokana to the mix means that my carb ratios and correction ratios are also a little off kilter.

And the math. Oh, the math. I forgot about diabetes word problems:

If Christel’s fasting blood glucose level is 164 because she bottomed out last night and the cortisol is still hanging around in her system and she wants to drink a cup of coffee with half and half now and scarf down an English muffin (double fiber!) with peanut butter before she goes running at the gym an hour later, how much should she bolus?

(If you know the answer, please let me know, because I have yet to solve it correctly.)

I’m pulling packages out of the garbage to get the carb counts. I’m eyeballing fruit. I’m eating more protein because it’s less of a headache. And yet, my CGM graph still looks ugly.

Here’s the rub: One unit of insulin means a lot to my body. It loves it these days. So much so that if I inject one unit to correct a BG outside of my comfort zone, I can send myself into a severe hypo. Which I did this weekend. Flex pens are only for one unit dosing (or two unit dosing). Yes, you can purchase cartridges for a half-dosing device, which I may look into doing next month if this continues.

The second rub: From my years of pumping, I know that my afternoons are when I need less of a basal. Crash. I will be decreasing my basal Tresiba dosage to counteract the crashing. We’ll see.

Why am I doing this?

Normally, when it’s time to eat, I reach down while glancing between my CGM and my meal and bolus. These days, I head off with my phone (mySugr is awesome if you are doing a MDI regimen. Seriously. No better way to track injections and food and times and BGs!) to check my BG by fingerstick, think about what I’m going to be eating, calculating if I still have insulin on board and how many carbs I’ll be eating. Then twist that pen, inject, and dispose of the needle in a sharps container. It’s not 30 seconds…

John asked me why I was really taking a break when we were eating dinner last night.

I think I’m doing this for a few reasons: 1) I really need a break. 2) I need to know if something does go wrong with my pump that I can handle MDI and know what my dosages should be. 3) It’s teaching me to be mindful of what I am eating and doing. It’s teaching me what it means to have diabetes again.

I may explore the amazing Dr. Steve Edleman’s “untethered regimen,” which for me would mean I would continue to take Tresiba (which I do like very much, for when I do get it right…. my BG levels are beautifully stable) and then only put the pump on to bolus. (This would allow me to do those 0.4 correction boluses that I simply can’t do right now with the flex pen.)

I’m still riding the diabetes bike. Crashing is inevitable when you’re learning to ride again.

Words of wisdom, anyone?

 

 

My Heart Is Snapped In Two

1414426_86457786There are worse things happening in the world. There are always worse things.

On Friday, as I was making dinner, a friend texted me:

“Did you hear the horrible news?”

My heart skipped a beat. The diabetes community is vast and wide and filled with people I love. Who was suffering? Or worse…who had died?

I didn’t respond by text. I rang her up and asked: “What happened?”

“Asante closed their doors today. They shut down.”

If you use an insulin pump, you’ll quickly understand how I felt. Your insulin pump is like a member of your family (it’s there at every meal, every occasion, and sometimes you fight with it…) and I have quickly grown to love my Asante Snap pump. I loved it so much that I became a consultant for them, writing about my experience with their pump and insulin pumping in general. It was no secret that I felt my control had improved that it was going to be the last insulin pump I used before the Bionic Pancreas became commercially available.

I am mourning the loss of an innovative company that attempted to give their customers what they wanted: choice. Some of the features the Asante Snap pump has is not available with any other pump on the market, and we’ll be hard pressed to find them integrated into any future insulin pumps (although they should – site change reminder? Missed bolus? Small things that made a difference in my time in range and overall control.).

Because I consulted with them, I also knew the employees that were just as passionate about the Asante Snap pump as I was. They were caught unaware, as all of the customers were. They found out Friday, right before the rumors started to fly and the public announcement was published on the website.

Customize-your-snap-insulin-pump-2Simply put, funding didn’t happen. The company attempted to go public, but pulled their IPO at the end of March when investors and the stock market didn’t bite. (Another pump company attempted an IPO at the same time, without success, and two other pump companies’ stocks were not doing well during the IPO offering.) From what I was told, the CEO was working with a company for a partnership and at the last minute, the deal fell apart.

 

I’ll choose another pump. (Both Animas and Insulet are offering Asante Snap users offers to switch.) The talented employees will find other jobs.

But my heart right now is snapped in two.

Goodbye, Snap.

Snap Decision

You grab a pack of gum at the checkout counter. It’s an impulse purchase and you don’t think about it. It’s a snap decision, made right then and there.

Choosing an insulin pump is anything but a snap decision. You research all of your options, talk with other people who wear pumps, weigh the pros and cons of each pump, and of course, find out if insurance will cover your pump and supplies.

In my case, my insulin pump choice was a snap decision. With a capital S.

unnamed-3The Asante Snap pump. 

After my warranty expired on my previous pump (Of course, it was pining for the fjords five weeks later.) and an opportunity to try the next generation of that company’s pump, I recognized that I needed to do further investigating. I’d only worn two brands of insulin pumps in the over 15 years of pumping. I am still happy with the choices I made back then, but back then, I didn’t have a lot of choices.

I cheer the fact that we have more choices now when it comes to insulin pumps and continuous glucose monitoring devices. Each pump and CGM has its strengths and weaknesses, which of course, means that some people will choose them based on their own needs, wants, and desires.

Here’s why I chose the Asante Snap Insulin Pump.

I Am Ricardo Montalbán

You can’t “test drive” a piece of gum. You buy it and if that new flavor isn’t what you wanted, you throw it away or foist it off onto someone else. It’s gum, right? Costs a buck? Pshh. Get outta here.

But it’s rare (or in some cases, impossible) to test out an insulin pump. This device is going to be a part of your life for a hopefully good, happy, healthy long time. And it’s not cheap. You choose a pump based on what you think it will do for you, go through the hoops (and oh, are there big, flaming hoops!) to get approval from everyone involved, only to find that… you hate it. I know some individuals who have returned their insulin pumps before the “trial” period is over, but it’s a big, ugly hassle and insulin pump companies don’t make it easy.

Asante gets that you should be able to take a pump for a test drive. Feel the rich Corinthian leather seats. Determine if what you want is what you actually get. They offer everyone who is interested in trying the Asante Snap pump a four-week free trial, including supplies, training, and support. I got to sit in the driver’s seat and go for a long drive. I wish all pump companies would do the same.

No More Rebel Yell Time In Range!

The four-week free trial is one thing. It’s another thing entirely when you discover that by not changing a single basal rate or bolus factor, that your time in range with your blood sugar skyrockets. (And when I say skyrockets, I mean supersonic space age shiny skyrockets.) Having the luxury of a Dexcom CGM allows me to see how my blood sugars play nicely (or not nicely) during the day. I was doing a lot of Billy Idol hair spikes. Without changing my eating habits or dosing timing, I saw spikes turn into smoother lines and when I downloaded my Dexcom (Finally able to do it on my Mac!), I was shocked. 80% time in range (for me, range is 70 – 180, but I’m already tightening the higher end).

Less lows. Less highs. All of a sudden, I wasn’t exhausted at the end of the day, chasing the blood sugar dragon. My head was clearer. I had energy. I thought it was a fluke, but after almost 8 weeks on this pump, I’ve come to realize it’s two things: the Asante Snap pump algorithm and the pre filled glass cartridges making this happen. I can’t take any credit for better blood glucose levels.

 Heart of Glass

The pre-filled glass cartridges not only help the insulin not degrade and lose potency as quickly as the plastic cartridges I once had to fill; it also cuts down on the time I used to fiddle around with pump  set-up. Doesn’t seem like a big deal, right? It’s a big deal. You get that I’m a two-minute sort of woman when it comes to diabetes.

Instead of the elaborate ritual of drawing up the insulin into a plastic cartridge, checking for bubbles, filling the tubing, checking for bubbles, priming the pump, checking for bubbles, I drop the cartridge into the pump body and it auto primes. In two minutes, I can complete an insulin pump set up, including a new insertion set. All that extra time I have now? I can rock out. 

(And I don’t have to hunt for a battery in the bottom of my purse. The battery for this pump is built into the pump body. You replace the pump body with the changing of the cartridge. Easy.)

I’m not the only one who thinks this is a good thing. I join Scott Johnson of Scott’s Diabetes, Melissa Lee of Sweetly Voiced and others who have switched from other pumps to Asante. Here’s what some people had to say about how easy it is…

The Little Things Add Up to Awesome

It’s the little things. A customizable color screen. A built in flashlight on the pump for those early morning BG checks. A missed bolus calculation if you stop your pump for a shower. (I never realized how much insulin I had missed even disconnecting for 20 minutes.) The ability to set alarms to NOT go off at 3am to wake you up to remind you to change your cartridge.

Some people prefer an integrated CGM and insulin pump. I tried it.  I’ve come to realize that I’m a Dexcom chick, tried and true. The other pump company with an integrated system has not yet updated its algorithm for increased accuracy. Plus… here’s the thing: The Dexcom G5 screen will be accessible to view on my iPhone I won’t even need to look at my pump to see my CGM graph.

When I was at AADE last summer and saw a glimpse of the future with Asante Snap (I sat next to Wil and we got to ooh and ahh at the demonstration, they announced not only would they be partnering with Dexcom for future upgrades, but they were the first company hooked up with Tidepool. (And you know how much I love them!). And then they blew everyone’s socks off my demonstrating bolusing the Asante Snap from an iPhone. I’ve never had a remote bolus device. I am totally ready for this. And when it does happen, it won’t cost me an arm and a leg (or a pancreas) to upgrade, because upgrades are $99. Straight. No chaser. 

I got to design my Snap. (Well, I got to have input. The Kid actually decided on the colors.)

No Pump is Perfect

No insulin pump is 100% perfect. (If it was, it would be called a pancreas and this blog wouldn’t exist.) I do miss the vibrating alarm option I had on my previous pump. I am a little jealous of other pumps that do have remote bolusing devices. I am a lot jealous of the current integrated pumps and CGM systems that work well. And I can’t upload my data at home; Asante currently uses the clinic version of Diasend.

I’ve talked with the management team at Asante. I’ve asked questions about their future models. They listen (and they even have a patient advisory board so they can get feedback). I see the Asante Snap becoming more perfect soon.

IMG_5863Time. In. Range.

Oh… that time in range. That blissful time in range that makes me feel more rested, less stressed, and looking forward to getting my A1C done. That makes it all worth while.

My new time in range makes my diabetes management easier and less about diabetes and more about me. 

Best Snap decision I’ve ever made.

I talked to Asante so much and gushed about how much this pump has improved my life that I’ve agreed to enter into a consulting agreement with Asante Solutions to write about my experiences pumping on their website. Please check the updated About page  for disclosures. Remember: My thoughts are my own. No one can make me write what I don’t feel or believe in on this blog. In fact, I get zero compensation for this – or any – blog posts on this blog. This is MY blog. MY words. MY thoughts. You get to read the uncensored version – always. 

My Affair With Earnest Hemingway…

1336773_53028368My affair with Earnest Hemingway is neither about love, nor about hate.

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

COBRA

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!”

And then…

“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.

The End