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 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:
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”
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.
I’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.
“People with diabetes have an increased risk of…”
“Diabetics are ten times more likely to…”
“Those who take insulin have to pay extra attention to…”
– – –
Want to get me to stop reading something? Include one of those three phrases, and you’ve lost your audience. Even make a subtle suggestion of added risks or statistics or additional chores and I’m gone – faster than a speeding bolus. Turn the page. Close the window. Scroll to the next article. Go for a walk.
All of these phrases do nothing but agitate me. They mostly don’t teach me anything new, they never teach me anything useful, and they certainly don’t get me to change my ways.
Because I’m already taking care of my diabetes.
I do my best.
My best may not be the absolute-best-possible, but it’s the best I can do at any given time, given my state of mind, my willpower, my location, the contents of my pantry, and the contents of my wallet. At that moment. I’m balancing the options presented to me, and making the best decision for me, right then and there.
(In other words, there can be “better than best”, but that involves sacrifices which aren’t very good, so I’m sticking with my own version of “best”.)
Sometimes I resist temptation to make me feel powerful. And sometimes I give in to temptation to make me feel better. Sometimes it’s best to be strong, and sometimes it’s best to feel comfortable.
“My best” varies from day to day, hour to hour. Depending on the circumstance. But whatever my best may turn out to be, I’m doing it.
I don’t need incentives or fear or threats to motivate me.
I’m already doing my best.
A new list of ten potential complications won’t lead me to do any better.
I’m already doing my best.
Warning me of the consequences of high (or low) blood sugar won’t change anything; I’m doing my best.
Telling me that my eyes are more vulnerable doesn’t make me try harder. I’m already doing my best.
Telling me that my teeth may decay faster doesn’t make me choose better. I’m already doing my best.
Telling me that I may die ten years sooner doesn’t motivate me to fight harder. I’m already doing my best.
None of it means anything to me.
None of it.
So please stop it with the morbid statistics and added fears. Just stop.
It doesn’t change what I do every day of my life.
I’m still on the same mission: to keep my blood sugars in control as best I can, while living a life worth living. That makes it less likely for bad things to happen. We don’t need to go into more detail.
Regardless of the reasons, the justifications, the threats, the risks, the statistics. That’s my job.
That’s what I do.
I do my best.
Whatever happens after that is up to fate — it’s out of my hands.
And I have no regrets, because I did my best.
I am guilty of a scary borderline-serious low this evening.
I say borderline-serious because I was still fully aware of what was happening around me, and because I never reached that confusing haze, also known as Telltale Sign Number One.
I say borderline-serious because my CGM was, at one point, showing a 54 mg/dl with double-down arrows.
I say scary because I felt fine – I had no idea I was so low (and going lower, with a full unit of insulin on-board from an earlier high correction). I would not have known if not for my CGM alert, and even then, I thought it was a false reading until my meter confirmed it.
Then the sweat caused my shirt to stick to my back, and my hand to constantly wipe my oversized (thanks, receding hairline) forehead. Then I really believed it.
Though I’ve been doing a really good job of keeping by blood sugars on the lower-but-normal side in the eight weeks or so leading up to Thanksgiving (I’m targeting a monumental A1c improvement), I’ve pretty much fallen off the wagon since Thanksgiving, so much to the point that I’m feeling lows when they aren’t really low, which has led me to trust my feelings more.
Sometimes, trusting one’s feelings is a good thing. When it comes to hypoglycemia awareness, it is not