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Guest Post: The One Diabetes Rule I Always Follow.

Thanks to the magic of the Internet and how words can travel from CA to RI by email faster than a sneeze, I’m happy to be hosting a guest post from friend and fellow PWD, Christopher Angell.  (You may remember him from such glucose tabs as GlucoLift and such guest posts as the one about decAY1c.)  Today, he’s writing about the diabetes rules he’s willing to bend and the one he always follows. 

*   *   *

When I was first diagnosed and started my testing and insulin regimen, I did everything by the book. I disinfected test and injection sites with alcohol swabs (no longer recommended). I used a fresh lancet for every finger stick, and I always removed and properly disposed of my pen needles after each injection. I was a model patient (except on those nights when I washed down a giant bowl of popcorn and a chocolate bar with a bottle or so of pinot noir…).

Over time, however, my diligence started to show some cracks. After one too many meals out where I fished out my Humalog pen only to realize I was out of needles, I started leaving my last used needle on, and only changing it right before my next injection, so that worst case, I wouldn’t have to skip dinner or run home and force everyone else to wait while I retrieved my supplies. After using that “emergency needle” one or two times with no adverse effect, I got more and more lenient, until I was only changing a needle when it started to hurt (or required noticeably more force to do its job). Then of course I figured that if needles could be treated like that, lancets certainly could too- they were far less delicate to begin with, since they weren’t hollow.

When I started on a Dexcom CGM, it didn’t take me long to realize that those expensive sensors could have their lives prolonged without consequence as well, and I was regularly getting more than 14 days out them (I still do). Unlike reusing the relatively cheap lancets and needles, that had a real financial advantage. I also quickly learned that I could save my skin some wear and tear by using sites other than the FDA-approved abdomen. In fact, now I can’t remember the last time I wore a sensor there.

Even insulin, I discovered, was often (though not always) good well after its expiration date, or its 30-day window after opening, and subjecting it to a life outside the fridge was usually surprisingly benign.

Now that I’m on a pump, I generally change my cartridge and tubing every 6 days. I still take Lantus as well, and use one needle for the life of each pen, and I’m confident that I will never have to buy another lancet as long as I live (even if I were to live for 1000 years). So to say that I play fast and loose with the usage guidelines of my diabetes devices is to put it mildly. I don’t do it to be stubborn, and generally speaking I don’t do it to save money (though that’s a welcome result). I do it because every second not buying, storing, or changing a lancet, needle, sensor, or pump cartridge is a second that diabetes hasn’t stolen from me, a second that can be spent sleeping, talking, eating, ANYTHING but diabetes-ing. And if I’ve learned anything from living with a chronic disease, it’s that ultimately there are no small things – over time they all add up. Those seconds becomes hours and days over a lifetime with diabetes, so they’re precious to me, and I will only surrender them to diabetes if I truly believe I’m getting something better in return.

Which brings me to the one rule I DO always follow: I never leave an infusion set in longer than three days. Why? Limited real estate. I already know that prolonged injection/infusion of insulin changes my body, and I can tell the difference between a site that has been in one or two days and one that has been in three. I know that over time, the ability for certain locations to absorb insulin can be compromised, and I know I only have so many locations. I also believe that the next substantial improvement in my treatment will be some version of a dual hormone closed-loop pump (quite possibly Ed Damiano and Steven Russell’s Bionic Pancreas). This means I will need twice as much serviceable tissue to enjoy the full benefit of that treatment. So I’m doing my best to preserve what I have. Spending that time now correlate to very real potential benefits  in the future.

In the meantime, I’ve found other uses for my lancets.

Looking in the Windows.

Following through on these eye doctor appointments at Joslin’s eye clinic usually means carving out 5+ hours in the day.

Even though Rhode Island is assumed to have a short commute to Boston proper, with traffic it can take two hours to get into the city.  Which means that for a 1.30 pm appointment, we had to leave the house at 11 am to ensure that we arrived 15 minutes before the appointment time, then the hour and a half appointment (including dilation and exam … and waiting), and then the two hour ride home.

I could find an eye specialist closer to my home in RI, but I believe in the care team at Joslin.  They’ve been caring for me for almost 30 years, and when I was diagnosed with macular edema last year, it was caught so early that no one panicked, but everyone was ready.  They were ready to do all the close monitoring required to track this eye disease, and they were also prepared for any medical or surgical intervention, should things progress to that point.

I trust them.  My complications are “common” to them, in that they see long-established people with type 1 diabetes all the time, and they treat macular edema all the time.  My eyeballs are run-of-the-mill to them.

I have some anxiety about macular edema because it’s new to me, and scary, and I find it comforting that my eye disease is something the Beetham Eye Clinic cares for every day.  It might feel like unfamiliar territory to me, but it’s just another day at the office for them, and for whatever reason, that comforts the hell out of me.

The staff at the eye clinic are very personable, and the technician who put in the dilation eye drops and tested my vision prior to the exam was extremely kind.  Their compassion helps put the feelings of trepidation to rest.  I don’t particularly care for the personality of the doctor, but in these appointments, we don’t really talk about “the whole patient.”  The focus is on the whole eyeball.  In this instance, I am willing to give on the relationship side of the HCP/patient equation in favor of his expertise.  Besides, it was easier to feel less aggravated by a doctor who speaks more to the computer screen than to the patient because this time, the news continued to be good.

This screen is how your eye looked in December,” pointing to a swollen optic nerve and a bright, obvious fat deposit on that nerve.  “And this is how it looks today,” pointing to a screen showing significantly reduced swelling and a barely visible fat deposit.  “This is better.  Much better.”

“So I’m still moving in the right direction?”

“Yes, this is good progress.  We can continue with appointments every six months.”

Last year, I had no idea I had this complication.  The symptoms of macular edema are hard to detect unless the eye damage takes a significant turn.  I had no idea something was brewing in my eyes until it was detected – and early, at that – by a dilated eye exam and a team of excellent doctors.  Eye-related diabetes complications unnerve me, but I’d rather know about them and track them aggressively rather than be surprised by them and experience irreversible damage.

We spent hours in the car getting there, considerable time in the waiting room, and then hours in the car on the drive home.  But I’d do it all over again, and will in a few months, in order to keep close watch on this diabetes complication.  My doctors can only help me with the things I let them know about by way of routine exams and screenings.  Informed doctors make me an informed patient, and everyone being well-informed helps me stay healthy.

I’d rather hope to regain good health than to fear the unknown.

Functionally Low.

The Dexcom yelled at me from the kitchen table – “BEEEEP, BEEEEP, BEEEEP!” – and I double-checked the alarm just to make sure I was actually low, since I’d been basal testing all morning long and I’m always wary of my graph when it’s nice-happy-in-range.

(Note:  It’s really, really easy to test basal rates when you take a red eye flight from Los Angeles to Boston and don’t sleep for even a minute on the flight, causing you to fall asleep for three hours when you finally get home to RI at 7 am, leaving you in the “No Eat Zone” from like 3 am – 11 am.  Exhaustion makes for easy basal testing.)

Sure enough, the alarms were right, confirmed by the 58 mg/dL on my meter.

Four glucose tabs, down the hatch.

Symptoms were alive and kicking on this low.  Numb lips, tingly mouth, that restless feeling in my arms where I suppress the urge to flap them, and the settling in of the low fog, where all my thoughts are smoky and loose at the edges, not fitting together entirely and leaving gaps between moments of clear reason, leaving all thoughts that made sense clouded with a big, “NOPE.”

The Dexcom showed me as still dropping ten minutes later – the dreaded double-down arrows – so I went for some juice.  Only it wasn’t a “stop and have a measured sip of juice” but more “grab a swig of juice right from the bottle while you walk by the fridge” because I couldn’t sit down for this one.

Some lows are disgusting and debilitating and don’t leave any wiggle room for choice.  But other lows (like the cleaning lows or the endless lows) have their own idiosyncrasies and distinct patterns.  This low felt like a functional low, where my blood sugar is in a ditch but I’m still able to walk around and talk, despite being in the 40 – 60 mg/dL range.  And if I were to sit down and actually acknowledge the low in full, the symptoms would take over and I’d be trapped.

Which left me wandering around the house, picking up toys that had escaped from Birdy’s room and absently looking out the windows or at my phone, focusing intently upon the mundane instead on the lack of sugar in my blood stream, while at the same time snacking on glucose tabs and peering at my Dexcom.  Chris saw me shuffling around the house and gave me some raised eyebrows.

“You okay?”

“Yep.  Low.  I already had juice,” which is Sparling-speak for, “I’m definitely low and I know I look scattered right now, but don’t worry; I’ve had juice and am just impatiently waiting for it to work.”

About thirty minutes later (after I had examined individual leaves on the houseplants in order to think about anything other than hypoglycemia), the Dexcom graph showed arrows pointing back towards safety.  Only then did my brain take the nope-filters off and let me calculate the total carbs consumed, and the potential blood sugar boost that might be coming.

 

A Day Late, an Islet Short.

I missed the last day of Diabetes Blog Week, but I’m determined to follow through on the prompts, because I love being part of this community.

The last prompt is to highlight some of the work we’ve loved reading this past week:  “As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment that made you smile. Anything you liked is worth sharing!

Here are a few of my favorite D-Blog Week things:

Insulin is not an enemy or a punishment!”

I dip my hand in and my fingertips taste like iron.”

How do I cope? Rip that fucker up.”

I weathered the storms each time. I likely grew stronger from each but the memories they don’t fade. So while ugly blood sugars, ignorant people, sleepless nights, and pure exhaustion get me down on any given day or hour it is the memories that trigger the real pain.”

“Finally, finally, my blessed end is nigh. Again, I was thrown away, but this time actually made it into the basket.”

It’s something that needs to change.”

Diabetes Blog Week has opened my eyes to many new writers and perspectives, and even though it may take me weeks to work through all the links and read everything, I’m so grateful for the opportunity to learn from and connect with my peers.

 

D-Blog Week: Saturday Snapshots.

I still think this is funny, even though it isn’t.

Original mishmash sentiment on this blog post from last year.

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