Sometimes It Is My Fault…

Minolta DSCIt was an idyllic day yesterday. Good cups of coffee, a happy daughter, jovial husband, and a trip to the park. The light breeze complimented the sunny warmth and I felt…content.

“You want to go get some ice cream?”

I like ice cream. With some foods, I never quite know what will happen with my blood sugar (i.e. pizza or a bagel), but I SWAG (Scientific Wild Ass Guess) for ice cream with a confidence that I rarely have with other sweets. So, the answer was a resounding yes and with The Kid firmly set on John’s shoulders, we marched a block to the local ice cream shop.

Peanut butter fudge ice cream with peanut butter sauce. Small cup. BG was going up a little (Snacks at the park – Pirate Booty), but manageable. I dosed and enjoyed every minute of that peanuty goodness. We walked back to the car, chattering away about birds and cars that go beep. I checked my graph on the Medtronic MiniMed 530G and it was stable.

The freefall happened within 20 minutes, and it was my fault. The idyllic day called us outside and an impromptu walk around our neighborhood. The magic number said 173 mg/dl with two arrows pointing down. We weren’t going far and weren’t going for long. A casual meander. Fifteen minutes later, it said 82 mg/dland I was not feeling content anymore. We got home and as we walked through the door, the alarm started to chirp. BG 72 mg/dl and falling. Meter said 62 mg/dl and I said juice. Drank it. Felt better.

It was my fault that I didn’t suspend the pump. It was my fault that I didn’t check 15 minutes later. It was my fault that I snuggled down into the couch and began to watch TV. I got sleepy. Thought I needed a nap. Stood up, waved at John and motioned to our bedroom, mouthing that I was going in.

Did I check before I went in? Nope. But the alarm kept going off on my pump and I ignored it. The threshold suspend feature kicked in and through my haze, I realized that this was not a drill.

I vaguely remember wandering into the kitchen, walking past my family and pouring myself a glass of juice. I was intent on getting “just eight ounces” into the cup, holding it up to analyze my measuring capabilities. I didn’t guzzle it down, but casually sipped at it as if I was at a cocktail party and didn’t want to pay $10 for another drink. John’s voice was fuzzy…or was it me that was fuzzy?

“You OK?”

“Oh, yes. I’m fine. I’m not fine. I’m low, but I’m fine. I’m drinking my juice and I’m going to be fine.”

He knew that I wasn’t fine. He verified that the pump was still suspended and told me that he’d come back in and check on me in ten minutes. (He checked on me in five minutes, but was in the next room in case I needed him.)

I drank my juice. I ate some things. I came up slowly. I shuffled past my peeps and back into bed, mumbling that I was tired but my blood sugar was coming up.

And up it did. You know the drill. Overtreat. Bounce. Soar. Dose a few units to stop the rise past 400 mg/dl.

When I went to bed, my blood glucose was 132 mg/dl.

Threshold suspend happened again around 2am. 54 mg/dl.

It was my fault. I take blame for this one for my choices of nourishment and my failure to check. I thank the pump for catching not one, but two sucky hypoglycemic reactions in twelve hours. (And yes, I know about the increase of more hypoglycemic reactions after a serious low. It’s my fault that I didn’t take more precautions when coming down.)

So, this morning, I’m running on fumes. And a BG of 97 mg/dl.

This disease is not my fault.

My choices are my own, and when they’re incorrect and cause issues with my disease…

it’s my fault.

 

Diabetes Hurts

1441012_62476745Diabetes hurts.

I’ve never heard anyone describe injecting insulin as graceful or gentle.

The needle bears down onto unblemished skin that begs to not be pierced. Nerves scream in anticipation as the metal bores underneath, invading the sacred temple of the body and pushes the very cells that give me corporal nourishment. It sears and brands the skin around it, leaving a physical scar behind as a permanent reminder of what I must do to stay alive.

If I told a stranger that I hurt myself on purpose daily, they would recommend psychological counseling immediately.

Not every needle insertion is a hot branding, but when you must, without fail, do this tortured dance for the rest of your life, knowing that you have endured over three decades of this, it begins to ache deeply. Even with smaller needle gauges and shorter lengths, no one has ever gleefully clapped hands and asked to be mutilated for their health.

Diabetes hurts.

Over and over, a lancet finds its target somewhere on a finger, slicing into the same tender skin that strokes my daughter’s hair as she drifts off to sleep. It’s become rote at this point, a slight turn of the head at the same nanosecond that the button is pushed to draw blood. A sting, temporary, to decide on the dosage of the drug that will keep me alive but could also render me unconscious or dead. That sting, several times a day, over time, is a weight that drags me to the bottom of the ocean, gasping desperately in my dreams.

Too much insulin and diabetes hurts. It starves brain cells and prevents me from making rational choices. The throbbing between my eyes competes with the violent contractions of my limbs to squeeze out the last vestiges of glucose within my muscles. My throat constricts, choking on the words needed for help.

Too little insulin and diabetes hurts. Toxic sludge sloshes through my veins, spewing poison into every organ and damaging the beautiful body my soul holds, shutting down the potential of a long life and health. The complications build an ugly monument where the delicate framework of what I am once stood.

The guilt crushes you, despite your best efforts of controlling what is uncontrollable. The questions of why build to a deafening roar. Labs slam your body into a corner, even when the results are expected. It infiltrates and infects those around you who love you and can’t live in your body or take the burden from you.

You may accept this disease. You learn to live with it, try to tame it, keep it in check and at bay. You talk about it, claim it, share your thoughts with those who understand.  But it bites and scratches and never relents. It will sink its viper fangs into you and not.let.go.

No one said it would be easy. I knew it would be hard.

But no one told me when I was diagnosed that diabetes hurts.

 

 

 

A Beeping Mess

headphonesI’m a beeping mess right now.

And beeping is not a substitution for an expletive, although it could be. Since my trial of the Medtronic MiniMed 530G with Enlite, I’ve become my own electronica band, beeping melodically throughout the day and night. No rhyme or reason, thus no rhythm at the beginning, but I’m starting to see some trends.

The MiniMed 530G with Enlite has a unique feature beyond the Threshold Suspend (The pump suspends if the Enlite sensor says your BG reading is below your “low” threshold.). It has a “predicative high” or “predicative low” setting, which will warn you if the algorithm believes you are going to go outside of the ranges you have set. When we did the initial setup, I put my low range at 80 mg/dl and my high at 200 mg/dl. (I drop pretty quickly, so I’m trying to catch it before I get to that point where I am not thinking straight and ignore the sensor readings in favor of…well, anything, because I think it my blood sugar will come up on its own while I’m walking around. Hint: it doesn’t.)

It is the new equipment adjustment period or is it my body? The food choices I make? (Pizza, oh pizza… I love you, but that 400 mg/dl? Even my broken pancreas rolled its eyes.) I beep, look at the pump, and it says that a low is predicted, yet less than ten minutes later, it says that a high is predicted. I’m still not used to the arrows that are on the MiniMed screen and everything is pretty wonky overall. But I’m learning, and that’s the point of this trial. I will figure this out.

The accuracy is not really in question at this point. How do I know? Because along with the MiniMed 530G with Enlite, I threw my Dexcom G4 sensor onto my arm on Thursday. There have been several times when both the 530G and the G4 have buzzed and beeped at exactly.the.same.time. If there’s any inaccuracy issues, I’ve found that sometimes it’s the G4 and sometimes it’s the 530G, but neither one is perfectly accurate all the time. Thus is life.

I haven’t had a night in which beeping hasn’t woken me up. The Threshold Suspend alarm has gone off, only to check my blood glucose level and find it to be a beautiful 110. Other nights, I’ve woken myself up and I’m low, except the 530G hasn’t caught it. (Until a few minutes later when I’m standing in kitchen over a glass of juice.) That’s been frustrating, along with the lack of response by the system to recognize that I’m coming up from a low, insisting that despite my canceling the threshold suspend, it throws up another beep and alarm and threshold suspend less than 10 minutes later.

John and I have had several discussions about the “is it me or the technology?” He maintains that it’s the technology, and to a large degree, he’s right. I need to train the technology to work with me… and I am also recognizing that I need to begin basal testing again. (It’s springtime in Paris and my insulin regimen. Hooray!)

I’ll have to adjust the predictive settings as well with the trainer, so that I can cut down on the beeping. I do find that it causes undue stress (and I’m full up on stress, thankyouverymuch) and worry that I didn’t have before.

So, if you need me, just follow the beeping. I’ll be dancing with the glowsticks in the corner.

The Worst Godmother Ever…

1401853_83250194Today is my thirty-first diaversary. I’ve already shared my story about that day and the days to come, but today, I’ll share a different story.

Happy Eleventh Birthday, Colin.

On my twentieth diaversary, the call came in from your mom that she was in labor and that I better get on over to the hospital. She and I had worked together in our twenties and without her and her sense of humor, work would have been dull and boring. She also became quite adept at recognizing my lows and highs, so she not only provided comic relief, but diabetes support too.

I was honored to be allowed into the delivery room on your special day. Diabetes was the last thing on my mind. Your beautiful face was what I wanted to see. I wished for so many happy things in your future.

Diabetes was not one of them.

Yet, the fates would not listen and I’ve been jokingly called the worst godmother ever by your mom.

Despite what anyone may tell you, I did not give you diabetes.

I prefer to think that I gave you my love of bacon and Diet Coke.

We are not related by blood, but we are, in a way. Diabetes is all about blood. Thicker than water, it makes us a family. Bound by blood.

Many of the things I wished for in your future have already come true.

You are a fighter. A charmer.

You are smart. You are a son that makes his mother proud. You are a child that makes his godmother proud.

Days with diabetes are not easy, Colin. Thank you for reminding me to find the joy in everything.

So, I’d like to think that your mom gave me the best gift anyone could get for a diaversary.

You.

May our blood sugars be stable today as we both celebrate our lives.

Much love to you.

 

Medtronic CareLink and Browsers of Yesterday

516892_68656024On the FAQ pages of Carelink. it plainly states:

Which web browsers can be used to access CareLink Personal software?

The system is currently validated to work with Microsoft® Internet Explorer® version 7, 8 and 9, Internet Explorer 10 Desktop, Apple® Safari® 4, 5 and 6, and Mozilla® Firefox® 5.0.1. Other browsers might still work although Medtronic Diabetes is not able to guarantee proper operation of those browsers.

 

I use a Mac. (According to Dexcom, I’m already a complete loser, as their CGM software won’t even run on a Mac unless you use a PC emulator program.) I have two browsers downloaded on my system: Safari (which comes standard on most Macs) and Firefox (which is easily downloaded and what I use occasionally for some banking transactions that demand Firefox).

I know that CareLink works on a Mac, because I’ve uploaded my pump data before on this laptop. So, the other evening, when I needed to upload data so that my trainer and I could look at it together while talking on the phone to adjust settings, I thought it would be easy.

I got this screen when I went to Medtronic’s CareLink link on their website:

Screen Shot of Safari Browser

My Safari was “too up-to-date”, so I couldn’t access CareLink through that browser.

Well, shoot. OK. Fine. I’ll fire up the Firefox browser I have… Version 21. (Not Firefox 5.)

Too up-to-date.

And by the way, if I wanted to download Internet Explorer right now, it’s IE 10 – or 11. And wait, they don’t have a version for Mac.

Frustration

If I didn’t have an amazing husband who is a web developer and happened to be home and was willing to sacrifice a pocket protector to the Geek God, I would have been not been able to upload my data. (He somehow configured something and magically, I have a Firefox browser that is…workable.)

I was able to examine the data that I uploaded, but I can’t imagine how frustrating it must be for others who expect that along with the latest technology they get from Medtronic, they get an upload system that will only work with the browsers of yesterday.

Yes, I expressed my opinion to the support team at Medtronic. I was polite, but I did use the phrase: “Unacceptable.” People who know me smile, as that means I’m pretty angry.

Will they do anything? Time will tell, which is pretty much been my phrase about this experience. What I do know is that it takes just one web developer to fix it and make sure that it works with all systems when there is an upgrade… I’m sure they can spare someone in their IT department.

Like I told you before, Medtronic, while allowing me to trial the system and all that comes with it, does not expect that everything I say will be rainbows and glitter about my experience.

The diabetes community talks incessantly (and I believe, sometimes to the wall) about the crucial need for integrated technology to make our lives easier to manage our diabetes. The Medtronic MiniMed 530G with Enlite is an integrated pump and continuous glucose monitor (and that threshold suspend, which I’ll write about soon… promise), but it’s an utter fail if you can’t use the browser… or two browsers…. or system… that you have to review the data and reports. Fail. (It’s not just Medtronic… Dexcom has failed me, too.) What good is the data if you can’t get to it?

Parting Thought

Heads up, Medtronic IT department. Please update your CareLink application and browser compatibility. (I’m not going to even talk about Chrome, which you supposedly don’t support at all…)

P.S. I’ll write about the actual reports that CareLink provides in another post. They do deserve a post of their own. But jeez.

Come. On.