Category Archives: Diabetes

Proactive burnout

{WARNING: This post is about 1800 words long and contains a lot of links. If you’re considering reading it while stopped at a red light, you’d best reconsider. Also, you’re driving, so put down your damn phone and pay attention to the road!}

~~~

Well, if you’ve been following my story over the past several months, you know that I tried to get a Minimed 530G with Enlite of my very own. And my insurance company denied me.

(Actually, prior to that I tried to get an Enlite CGM of my own to use with my Revel pump; but since those products aren’t made to work together, my endo denied me).

Luckily for me, the folks at Medtronic like me, and they agreed to let me keep my trial pump (which is probably a year old by now) and supply me with sensors in exchange for regular posts on The LOOP blog (Have you seen my latest, Finding Confidence: Not Letting Diabetes Hold Me Back? It’s right here.) while I go through the process with my insurance company.

The stress and anxiety in preparing my appeal was tremendous. Honestly, it feels like the appeal-process caused me more grief than diabetes itself ever has.

“March on!” “Be strong!” “Don’t give up!” everyone said. So I put on my lawyer-hat and wrote the best damn bulletproof appeal letter that UHC has ever seen. I pointed out each and every error in their incorrect decision, leaving no loophole unplugged.

It was mentally draining. I don’t know how lawyers do this stuff day-in and day-out.  I suppose it’s easier when it’s not about yourself.

~~~

Meanwhile, I’ve been finding the insertion-process of the sensors a bit unwieldy. The whole left-side of my abdomen is unusable, partly because of scar-tissue and partly because I sometimes sleep on my left side, and the Enlite doesn’t take too kindly to being slept on. Which leaves me with either the right side, or the “unapproved” locations.

My favorite insertion site with the sinister Sofsensor was my arm (as you can tell from this video that I posted last year, in my personal all-time-number-one-favorite-ever post on this blog. Watch it!), and I was able to do it with ease.  But I can’t do that with the Enlite because of the required overtape-application. At the old age of 41, I just can’t contort my body in the awkward positions that allow me to do these things anymore. (And if the last sentence ruined any secret sexual fantasies you may have had about me, I’m sorry. Maybe watching the video again will help).

Seriously, as I try to make my diabetes-device-life as simple as possible (maybe it’s the Snap-influence?), I look at myself going through this process, hoping to get it right and not ruin the sensor, every six days for the next four years, and it bums me out. That’s where the “proactive burnout” concept in the title of this blog comes in. I’m getting burned-out over things I haven’t even done yet! That’s just not healthy.

So I did what any 41-year old man does when he needs to blow off some steam. I turned to online porn videos.

No, not that kind you’re thinking of. I’m talking about the videos I found on YouTube showing the penetration of a Dexcom sensor into the subcutaneous tissue. Watching the technique puts me in a transe – I’m captivated by how predictable and intuitive it seems. It glides in smoothly and easily and doesn’t require a lot of extra products for it work. I’ve been watching these homemade Dexcom-insertion videos one after the other, and have sometimes fantasized about what it must be like to be that person.

True, the deed is done in five seconds, but that’s the whole point. We’re talking CGM insertions, remember?

~~~

I still love the things that the Minimed and Enlite offer me. It’s great to not have to carry another device around. I like how I can respond to a “High” CGM alert and can take a correction bolus without putting one thing down and picking another thing up. I love the little tick-marks on my graph that show when I’ve bolused, so I can gauge if my upward-trend is reversing in time or if I need another hit. The ability to backfill 45 minutes of data from the transmitter to the pump/receiver is priceless, especially so I can see a usable BG trend within minutes of jumping out of the swimming pool — because being disconnected AND unmonitored is one of the most frightening feelings of all. And CareLink….ooohhh.. that’s my other piece of diabetes porn. It completes me.

Yes, I’m in need of some serious help.

Threshold Suspend, however, I can do without. In fact, I keep that feature turned off 95% of the time. It never catches me off-guard (all of the bells and whistles that come before it are bound to catch my attention), and when it does kick in, either I’ve already manually suspended the pump and/or treated the low, or the sensor crapped out.

That, by the way, is why my doctor can’t say – in good conscience – that the 530G with Enlite is “medically necessary”. And in that regard, I agree with him to be honest.

~~~

So I’m stuck with a pump that I really, really like, a sensor that I’m somewhat content with, and an insurance company that doesn’t want me to have it.

On the other hand, since I started my trial just one year ago, there have been three big developments with the competition: (1) the G4 transmitter has gotten smaller, (2) the G4 algorithm has been improved, and (3) I can share my results ad nauseum.

I’m not so influenced by the ability to Share, but the other two items are really big to me. And knowing that the Nightscout crew has already figured out a way to hack into Share data tells me that someone, someday, may develop a way to Carelink-like heights in reporting data. Once the data is “open”, it’s much easier for this to happen.

Some things though, with Dexcom, haven’t changed.  It’s still another device to fumble with. It’s still bigger than the Medtronic sensor. It still won’t let me customize different alarm-thresholds between day and night. And when it awakens me from my slumber, I still can’t reel it in with my tubing to shut the damn thing up. (But on that last one, maybe that’s a good thing. Getting your attention is the whole point of a CGM, isn’t it?)

~~~
So where do I go from here?

I have no real desire to jump back into the appeals process. I just don’t have the time, the energy, or the fight in me to wage that battle right now.  Maybe in a week I’ll change my mind.

I also don’t know what the future may hold. My Revel pump warranty ran out a week ago, but the 530G has been on the market for a year and a half already. I’d hate to block myself out of the next-big-thing because I made a new 3- or 4-year commitment to what is no longer “new” technology (this applies to both the 530G and the Revel, in my opinion — despite the annoying “Have you heard?…” message on MedT’s helpline).

Though, I do know from some preliminary data that’s been released by MedT, that their next sensor is expected to have the same form-factor as the current one– with the transmitter hanging off one side. This is a big problem with Enlite because any downward pressure on the transmitter will pull up the sensor, as if they are on both sides of a seesaw. That’s what all the overtape attempts to solve. If the next sensor is, mechanically, built the same, then this problem will continue to exist, no matter how great the electro-chemical part of the sensor itself is. And the preliminary data I have on that, as well as my own experience, is very good — it works great and it’ll keep getting better. But a system is only as strong as its weakest part, and the best insulin in the world is useless if the cannula keeps falling out.

Or maybe not. There is some encouraging (or, perhaps I should say alluring) data on Afrezza, and Smart Insulin may become a reality. This could make the pumps obsolete altogether. Who knows?

The bottom line is this: I have no freaking idea what I want to do — I can’t wait to stop making decisions and stop asking permission — and to just do it and move on with my life.

Being stuck with a decision that will affect me for the next several years is leading to Proactive Burnout.

~~~

FINAL THOUGHT: It is very hard for me to write this post, particularly because of my relationship with Medtronic, which I’ve referenced above and have disclosed here. I am tremendously grateful for what they have offered me: not only the opportunity to try their equipment and to continue to use it as I go through the insurance process, but for the privilege of being a contributor on The LOOP Blog. I sent an email to them notifying them of the insurance denial, and simply stating that I’m not sure what I want to do next. That’s all I said.

We often read about “relationships” that certain bloggers have with certain vendors, and they almost always are accompanied by a statement that the thoughts expressed are not influenced by said vendor. I commend those bloggers who write this and who mean it, because it is really, really hard to do. In friendship, in business, and in these blogging-things (whatever they are), relationships are earned and not just handed out. Some reciprocity has to exist in order to maintain that relationship. Maybe not in praise, but merely in the repeated mention of a product by name, or the resistance to mentioning it in a less-than-flattering manner.

This doesn’t mean that I’ve been I’ve been dishonest in my praise of Medtronic. My thoughts are genuine and my opinions are real. If I’ve put forth any criticism, I’ve attempted to make it constructive. (You know that temporary-bolus wraparound that has bugged me for so long? THEY LISTENED! I don’t know if I really had anything to do with it, but it still makes me happy).

But a post like this, where I’m publicly contemplating if I want to continue using their CGM — even if the reasons are beyond their own control — doesn’t sit well with me. And I truthfully have some fear of repercussions. Am I stabbing them in the back? Am I destroying a relationship/friendship? Will they ask for all their stuff back tomorrow (they’re certainly entitled)? Will I forfeit a chance to try out the 640G when it becomes available (no such offer, or even a suggestion of one, has been made, BTW)? Am I thinking too materialistically? Am I thinking too sensitively?

Where do I go from here?

 

I have no recollection of that bolus, Senator

I woke up low yesterday morning.

Which, ordinarily, is no big deal. It happens. I’ve been pretty aggressive with my pre-dawn basal rates, actually trying to program a Super Bolus into my regular basal pattern (jack up my basal rate really high one hour, then cut it down to almost zero for the next) so I wouldn’t need to play those games every day at breakfast.  That hasn’t been working too well, but that’s not why I woke up low.

This is why I woke up low.

BolusHistory

Apparently, for reasons I can’t remember, I decided to give myself a shit-ton worth of insulin at 3:25 in the morning. Without entering a BG. Without entering carbs. Just straight, unjustifiable Novolog.

Read the rest of this entry

Sparing the roses

I’ll be honest.

I contemplated not writing a Spare-a-Rose post this year.

Seriously, what good would it do? Unless you’ve got your head in the sand, you probably already know about it. You’ve probably already read a post, or two, or twenty about how flowers die, children shouldn’t.

Each post is practically a carbon-copy of the one that preceded it.

What could I possibly add to the discussion, when everything has already been said?

And I still can’t understand how insulin costs upwards of $100 per month’s supply where it is plentiful, yet it costs only $5 per month’s supply where it is scarce. So much for the fundamental economic rules of supply-and demand.

And I still can’t comprehend how, in a part of the world that is deficient in modern medicine, we know that children need insulin, yet time and time again we fail to diagnose the need for insulin in children (and adults!) in our own country.

Yes, I consider myself fortunate. Not when I pop open a new vial of insulin ( I do tend to take that for granted – but shouldn’t) — but because someone was smart enough to check my sugar levels on that day when my mom dragged me to the pediatrician’s office in 1981.

Yes, there are serious problems with the medical system in the 48 countries that stand to benefit from the IDF’s Life For a Child Programme and the Spare-a-Rose campaign.

Yes, there are serious problems with the medical system here in the United States. And if you’re reading this from somewhere other than the US or the aforementioned 48 countries, there’s probably room for improvement where you are, too.

But this isn’t about who is more deserving of help. Or about solving the larger systemic problems.

It’s about filling an immediate need for someone who is desperate. About thirty more days of life rather than zero. It’s about children.

And as my friend Alecia likes to say, “Do good, feel good.”

You know the drill. You know how it works.

Here’s the link:

Spare-a-rose-2014-banner

http://www.p4dc.com/spare-a-rose/give/

 

 

Quotes that stick

Having lived about eighty percent of my life with diabetes, I’ve heard a lot. Trust me, I’ve heard some real gems.

Maybe it’s because it’s my nature to let things roll off without bothering me, or maybe it’s just old age —  but I’ve forgotten most of the snarky and ignorant  things that have been said to me.  I’ve forgotten lots of the good stuff, too.  (I find myself constantly referring to my “Bolusing for burgers” post to remember how to handle high-protein meals).

But some stuff sticks.  There are things that people have said – whether three years ago or thirty years ago – that I have never forgotten.  And I don’t think I ever will.

Here are some of those Quotes That Stick, and how they made me feel, and (possibly) why I remember them:

“We’ve got diabetes, and we’re not sharing”

Read the rest of this entry

Uncharted territory

Last Tuesday, I made a visit to my favorite phlebotomist (LabCorp) and gave them some samples of my bodily fluids, as prescribed by my endocrinologist. My visit with my Endo is on Friday (tomorrow).

The whole concept kinda weirds me out a bit — the person who draws the blood has a ridiculous-sounding job-title (though not deservedly so – the LabCorp facilities I go to generally can be described as almost no wait, almost no pain – a welcome switch from the place I used to use). Then they FedEx three tubes of blood and a bucket of pee to some mad scientist in a basement laboratory where he counts Hemoglobin molecules under a microscope – and also checks to see if the pee congeals when mixed with his super-secret blend of herbs and spices. Then the let the concoction ferment for a couple of days and see what happens.  (Think my assessment of the lab is far-fetched? You know where the term mellitus comes from, right?)

OK, maybe not. But the whole process is quite mysterious. But that’s not the point.

While I was going through the ritual of signing away my rights and producing my insurance card, I overheard someone else ask how long it takes before the results are available on “Beacon”.

I learned that LabCorp now has something called “Beacon”, where the results are made available directly to the patient, without waiting for the doctor to release it. (You can sign up at http://patient.labcorp.com/). For 33 years, I’ve always gone to my endo appointments in suspense, wondering what he would tell me about my lab results, then scrambling to come up with some sort of reason/explanation/excuse/justification for them, on the spot.

But I got my results this past Monday. Six days after the blood-draw and four days before the appointment. Actually, I got an email telling me my results were ready, and all I needed to do was click on the link and enter my password.

It’s a weird feeling, knowing that this information is available to me ahead of time. It’s almost like peeking at the teacher’s grade book before the report card comes out. Or opening up an envelope from my top-choice college to see if I was accepted. Or learning if my child will be a boy or a girl.

But in an email. While I’m sitting at my desk at work.

I shouldn’t be looking at this information; it’s not for my eyes yet. I should just wait and have him tell me the results – with some context surrounding it (and more, if necessary). That’s the way it always works.

Nobody wants to hear of a diagnosis by text message. Nobody wants to hear catastrophic news by email.

– – –

Let me back up a bit, and tell you what these labs were all about.

Sure, there was the A1C. I’m used to that one, though I had no idea what to expect.  In the early November timeframe, I was doing great with my blood sugars. And at one point, a CareLink report (over a one-week duration) pinned my average blood glucose at a number that equates to an A1C of a 5.9.  Now, I know I haven’t revealed my A1C here before, but I can say that I’ve never had an A1C that low since diagnosis.  But that was over a glorious one-week period. I knew then that I wouldn’t be able to (and know now that I wasn’t able to) repeat that sixteen times over. I also know that the last three months have yielded more serious lows and more sustained highs than I can remember in a long time. So, in other words, my A1C was a total crapshoot. I couldn’t even make a guess.

But there was also the TSH — the measure of whether Thyroid Stuff Happens.  At my last appointment, they said my TSH results suggested I increase my Synthroid dose.  I objected, because I had just refilled my prescription for the current dose, and changing the dose would mean my earlier co-pay is wasted. I admitted that I’d not been waiting the requisite half-hour after Synthroid before eating, and that perhaps this was the reason for that test result. So I promised to alter my routine to get that proper waiting-period, and we would re-test the TSH in six weeks to see if I still needed a dosage adjustment. It turned out that the result was fine and I could stay on my 75 mcg/day.

And finally, there were the couple of tests for celiac/guten (in)tolerance that I had requested.

The A1C had me concerned. I’ve dealt with A1Cs before, and know what (I’m supposed) to do about it. The celiac ones had me worried – thoughts of de-glutenizing the house and the family seemed overwhelming. The thought of having everyone change their diet because of me was guilt-waiting-to-happen (especially since my kids are allergic to peanuts, but I still eat peanuts in the house – with no ill effects to anyone).

Surely, if there were a problem, I’d get a phone call from the doctor immediately, right? Or perhaps not. It’s not like someone will look the lab results and say Holy crap! This guy’s got diabetes! We’ve got to get him to the Emergency Room NOW!

Could I bear to see these results, sitting alone at my desk at work, without any sort of rational-headed medical professional or compassionate been-there-done-that bearer-of-news across from me? I hesitated, briefly.

Then I opened the email, clicked the link, and entered my password.

My A1C is exactly what it was the month before. It’s what I categorize as “OK” — not quite where my personal goals want it to be, but not somewhere that causes worry either. (And not a 5.9!)

My blood glucose at the time of the lab draw was 117 mg/dl, which LabCorp considers “High”.  Eff You. I’m fine with that.

My proteins and calciums and albumins and globulins  – whatever they are – were fine.

Both celiac tests were “less than two”. A negative result is considered zero through three.

Jan2015-labsI’d like to know how much less than two, because I know people have some degree of gluten intolerance even without any sign of it on the blood test. So while this is, in a sense, a relief, it still leaves a bit unanswered in my mind (like: is it gluten, and if not, what the hell is making my whole digestive tract so funky?).

And the TSH — well, the result is “high”, which means I don’t know if my Synthroid dose is good enough or not. (I interpret “high” with a grain of salt, just as I interpret that 117 mg/dl or the acceptable A1C). But I’ve had more dosage increases on that stuff in the last couple of years than in the couple of decades prior. Maybe my thyroidometer is at 35,997, just holding on long enough to crap out after the 36,000 mile warranty expires. (That’s the way it always works, doesn’t it?)

I swear, since I turned 40 almost a year ago, the aches and pains have increased dramatically. Muscles and bones and organs and glands that used to work well (well, except for the obvious one) are getting rusty and creaky. I’m really becoming an old man.

So anyway, I have my results. And on Friday I have my endo appointment.

I’m OK with my lab results, but if I weren’t, would this be the opportunity to start scripting and rehearsing my excuses now?

When he tells me the results, do I fake a reaction — as if I walked into a surprise party that I’d figured out already?

Will I walk away from my appointment with the renewed (but short-lived) motivation that always comes after an endo appointment? Or will it simply come off as a waste of my time, learning what I already knew?

Getting my results ahead of time is uncharted territory.  And it’s a lot weirder than I’d ever expected.

Follow

Get every new post delivered to your Inbox.

Join 1,814 other followers