Sweet Geek

Thoughts on Health and Nutrition

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Dexcom Gives Me Warm Fuzzies

Kitty Hug!
Warm Fuzzies

My Dexcom G5 arrived this week! It was a 3 month battle of wits against the medical machinery and victory is so so sweet.

My thoughts are a jumble. I could go into details on how it was to first setup and use. I could show you some graphs of my first few days, and over-analyze them. I could go over the pros/cons of using the receiver vs. my iPhone and all of the tech in-between. But that’s not what is sticking in my mind right now.

You can pry my CGM out of my cold dead hands

This is how I felt after just one day with a CGM. Having access and insight into the beast that I have been fighting for six years… I have no words. Wait, scratch that!

Every diabetic should have access to a CGM

Full stop. Regardless of of age, type, or treatment. To know that a device exists which tells you exactly what your blood sugar is, every minute of the day and night, and shows you when it is rapidly charging in the wrong direction, and gives you a nudge when your blood sugar requires intervention, and then deny a diabetic access to it… it does not compute. But that is a rant for another day.

For the moment, I am sticking to my usual routine, eating and injecting just as I would have without a CGM, just to see how it was working and establish a baseline. So far what I am learning is that my puny seven tests a day were painting a very incomplete picture. There are a lot of high swings that then camp out for hours, with me thinking that my insulin had done the job. It is impossible to tease out what’s due to a weak basal, poor carb counting, conservative i:c ratios, delayed protein spikes, dawn phenomena…

Over the next few weeks I plan on performing a series of controlled tests to replicate and isolate troublesome patterns. Also rereading Think Like a Pancreas and Practical CGM are in order. It’s tempting to just get really strict and overachievery to force my graphs to look pretty, but that won’t help me in the long run. These tests will identify my basal requirements, the proper i:c ratios, insulin duration (hint: it ain’t nowhere near 5 hours), sensitivity factor throughout the day, etc. With this info I can manage things day in/day out, instead of only when I am intensely motivated.

Wish me luck!

Accepting the Disconnect

It's not denial. I'm just very selective about the reality I accept.
Calvin and Hobbes

I saw an endocrinologist and CDE for the first time this week, after being diagnosed for 6 years. Predictably, they recommended blood glucose and carbohydrate targets that I completely disagreed with:

  • 45g of carbohydrates per meal
  • A1C of 7%
  • 2 hour post-meal blood glucose of 180

As a “Bernsteinian”, however poorly I manage to follow his advice, my gut reaction was to argue and somehow convince her … of what I’m not sure. I started by saying that I preferred the American Association of Clinical Endocrinologists (AACE) blood glucose targets, hoping that as an endo, that would hold some sway or unlock her “informated patient mode”. Err, not so much. Instead I was rewarded with a wry look and lecture that the ADA and AACE targets are the same… le sigh

Then I reminded myself why I was there, to get a prescription for a CGM, and decided to shut my trap so that I didn’t ruin my chances. After waiting two months for this appointment, I was not going to blow it with this new doctor.

So I doggedly steered the conversation back to the CGM, over and over, until finally she agreed to write a prescription, if I first met with a CDE to learn more about it. I promptly agreed, letting her know that I had taken the entire day off, and that I would be happy to meet with the CDE today.

Back in the waiting room, the receptionist promised to “squeeze me in” and I cooled my heels for 2 hours. Reflecting back on the less-than-stellar first impression of this new endo, I found myself becoming bitter. Afterall I had chosen this place, the Kovler Center for Diabetes at the University of Chicago, because I had naively hoped that they would somehow be “enlightened” and more up-to-date on diabetes technology and treatment. Yet here I was getting the same frustrating, canned advice that I have gotten from GP’s past.

Now, everything I’ve written so far isn’t worth writing about. Anyone who’s spent 5 minutes talking online with other diabetics has run into this. This mind-bending disconnect between what we see as ignorant, or willfully harmful, outdated advice guaranteed to keep us diabetic, progressively more sick, yadda yadda yadda. Conspiracy theories abound. What is interesting is how I decided to react. Instead of going down that well-trod path, allowing myself to become upset, I made a decision to look at it differently.

I would view their advice not as a way to keep me sick but instead as a way to set expectations on what they will give me grief over:

  • 45g carbs per meal became she promises to not scold me about a meal unless it’s MORE than 45g carbs.
  • 7% A1C became she promises to not give me the third degree unless my A1C is greater than 7.
  • 2hr post-meal blood sugar of 180 became she promises to not get on my case about how I’m managing my insulin boluses as long as I don’t go over 180 after 2 hours.

Essentially, rather than looking at everything she recommended in a negative light, I chose to accept it as a contract with my doctor. If I am achieving these targets, then I don’t have to worry about what she’ll say at my next appointment.

I have such a poor relationship with the medical profession, and this was a revelation for me. A huge weight was lifted from my shoulders! I now know exactly what I need to do in order to not dread my next appointment. No more indecision about what to share with them or how they would react. I am hopeful that this will save me a ton of anxiety and help me maintain a healthier relationship with my new doc.

By the time the CDE called me back, I walked her through yesterday’s meals and boluses, asked a few questions about the CGM (to not look like a total geek who has already read 3 books about them in preparation) and left with a CGM prescription. It’s still winding its way through the doctor/insurance/pharmacy obstacle course. But I will be getting one; I’ve earned it.

A Day in the Life of Daytona

After being hit by the diabetes truck 6 years ago, I am seeing my first endocrinologist tomorrow. I am terrified. I am excited. I am hopeful. I am ashamed.

A few years ago I had a pretty good handle on my diabetes. The coolest kids on the diabetes forums all assured me that diabetes isn’t progressive. If I maintained normal blood sugar levels, aiming beyond what doctors and the ADA settle for, then I could control my diabetes indefinitely.

Unfortunately, I am not as awesome as my online persona may have lead you to believe. Over the past three years my fasting has crept up, up, UP. Before I started insulin this January, I would regularly wake up at 185, and never see a number under 145 for the rest of the day, no matter what I ate. Eight months later, after first admitting that “I need just a little help”, I am now admitting that I need a metric butt-load of help. Here’s an average day in the life, and mind, of Daytona:

  • Wake up at 145. Inject 13u of fast-acting Novolog to stop the steady climb and keep it down around 100. Inject 25u of my basal insulin, Levemir. Log all the things on my phone.
  • Walk at my treadmill desk and read email, sometimes with a wee bit of coffee, until I am concede that yes, I am in fact awake.
  • If I’m feeling masochistic, obsessively test my blood sugar during this time, injecting more insulin in the vain hope that I could get my blood sugar under 100 to my target of 80. I’ve mostly given up on this and don’t look again until lunch.
  • Test before lunch, usually around 125. Combine my correction (5u) and pre-bolus (2u) into a single injection about 30 minutes before lunch.
  • Fart around and pretend to work until I can eat.
  • Scarf down my salmon, broccoli and soul bread (9g of carbs total) while working.
  • 2 hours after eating, get a 115 and let it ride.
  • An hour later remember that I forgot to record the last 2 tests and my injection on my phone, dig up my meter and redo the math for my bolus and reproduce what I most likely did.
  • Go back to work and do my best to not think about eating a snack.
  • Give up and eat a snack, then feel bad about not bolusing for it. But I’m not really sure the best way to bolus for a 7g fatty snack and I am not really confident 5g of those carbs are real. Should I pre-bolus, or do it afterwards? I can’t wait that long and an hour ago thought that I could make it through the afternoon without a snack and now I’m grumpy and want it NOW! Also I don’t want to see that I’ve yet again failed to hit my target and then have to decide if I should correct too. In the end, it’s two hours of fighting in my head and then 1 minute of guilt-ridden nomming on a single square of 100% unsweetened chocolate with a tsp of unsweetened peanut butter plopped on top. Seems like a good use of my time.
  • Stop working and test my blood sugar again, oops 136. Do another combined correction (6u) and pre-bolus (8u) 30 minutes before dinner. I’m tired of everything at this point, and for some reason I hurt all over, so I order my go-to meal of 5 plain chicken wings, a small french fry with some delicious melted american cheese (46g of carbs). The cheese is for the wings. Slimey yet satisfying!
  • Pickup my dinner and eat the cheesy wings first. Look longingly at my cooling fries, managing to hold off on eating them until I’ve finished the wings, about 15 minutes later.
  • Test 1 hour after I started eating the fries, and pat myself on the back for the 133.
  • Check again at 2 hours, turds, 163. Wonder why sometimes this meal works and other times it doesn’t. Feel bad about not shopping and making home-cooked meals, then feel bad about being too tired to do that, then wonder if the new endo is going to actually read my logs. Maybe she is a low-carber who will helpfully point out that if I just didn’t eat carbs, I could go off insulin and all my problems would go away? Console myself with the knowledge that most doctors are high-carb, and instead I will be scolded for eating so much protein/fat and not enough quinoa or kale. Have a good cry because no matter what I do, the doctor will rightfully see through my bullshit and know that I am pathetic excuse for a human being, with no self-respect or willpower who brought this on herself and doesn’t deserve her time or treatment…
  • Put on my big-boy pants, calculate my IOB (7u), then take another 4u because I just don’t trust that the 7u is going to really bring me down another 70pts.
  • Check again an hour later, 136. Leave well enough alone, inject 25u of Levemir and go to bed.

That’s a pretty good day actually, only 7 tests, no highs over 200, and just 6 injections.

So yeah, I need help, probably therapy. And god help me, I wish I had some Xanax right about now. But as I tell myself every night before falling asleep, “Tomorrow everything is going to be different”.

The A1c Is a Lie: How Mildly Bad Blood Sugar Levels Nearly Crippled Me

I’d like to share my experience living with “mildly bad” blood sugar levels, e.g. 140-200. In some circles, I realize this is not news, and they preach that anything over 140 can cause complications. Instead I am quoting every doctor who’s ever looked at my A1c or my daily blood sugar readings, and congratulated me on being “well controlled”, or only “mildly bad” but certainly not bad enough to either a) cause complications or b) warrant my requests for Metformin and insulin.

For two years, I was camping in that magical range. Not bad enough to get anyone with a prescription pad to take me seriously, but evidently bad enough to cause trouble.

One day while eating breakfast, I had a sharp stabbing pain in my right thumb. I yelped and clutched my hand, wondering what the hell had just happened. For the next 15 minutes, anytime I bent my thumb, the pain would return and I couldn’t think or move. Just waited for it to go away. This happened on/off for a week before I saw my doctor. They assumed that I must have somehow injured my thumb and had me splint it for 2 weeks. While splinted, my thumb didn’t hurt but when my two weeks were up and I took off the splint, the pain kept coming back.

I’m going to skip the very long rant/sob story where I spent the next 12 months seeing doctor after doctor, the best specialists money could buy in Chicago, and enduring three very painful (and failed) steroid injections. By the end of that year, they had investigated a number of possible diagnoses from trigger finger to carpel tunnel, but my thumb was still just as bad, and now both my hands were aching day and night as well.

Let me step back for a moment. I am a computer programmer and when I introduce myself I like to joke that “I am paid to type”. What I was going through wasn’t just about the pain, it was a threat to my entire career and sense of self. I was severely limited in how much I could work, and thanks to all the hoops I was jumping through with my keyboard and mouse to minimize the pain, was noticeably reducing my productivity. I didn’t know why but I was quickly becoming crippled, too disabled to work, play with my nephews, clean the house, button my pants…

Then I got lucky. In tears, I explained to my doctor that this was killing me and I needed an option other than exploratory surgery. She sent me to a physical therapist because she didn’t know what else to do with me.

The therapist measured the range of motion in my thumb, fingers and wrists then very bluntly said that if I didn’t figure out the cause, I really would be crippled. She showed me how my hands could barely open up anymore. I had “claws” instead of hands and was doing little things every day to compensate for it. I started a course of treatment, where she would massage my hands for an hour 3 times a week, which sounds pleasant until you see how she did it!

She would press those metal tools deep into my skin, working along the tendons, between the bones in my hands and in my joints. I could feel it scraping against these gritty lumps that I didn’t even know where underneath my skin. They were everywhere but especially on my tendons. Slowly, this “massage” broke up the insidious scar tissue and I could open my hands a bit further. After each session, my hands would double in size, hot angry red and I’d immerse them in ice for an hour afterwards, not feeling the cold.

It was some tough love but it worked. Over the weeks, I learned that this was from my diabetes. It wasn’t “just trigger finger” like the over-paid specialists thought. It was deposits caused by high blood sugar, coating my joints, sticking to my muscles and tendons.

After 3 months, the treatment was complete, or rather my insurance was done paying for it. She sent me on my way with instructions on how to massage my hands 10 times a day, flexing and pulling my fingers to prevent the claws from coming back. It’s been a year since I stopped treatment. I still follow what she says every day. Not because I’m a trooper, but because if I skip this for even ½ a day, my hands stiffen up. If I skip for a week, the thumb pain comes back in full force.

I was nearly crippled by my diabetes. My blood sugar wasn’t scary high. My worst A1c was 6.9, but most of the time was “just” 6.1. After fighting with doctors for over a year, I’m finally on Metformin and basal insulin, bringing my blood sugar down bit by bit. My hands are getting better since starting insulin; I only have to massage and go through my therapy routine 4 times a day.

I’m not sharing this to solicit advice or sympathy. I just want you to know that this or something else could happen to you. If your doctor is anything like the five that I have gone through, they may tell you that your blood sugar is fine. Don’t believe them.

Hurling Insulin

Rather than explain my multi-year hiatus, I’ll just jump right in with a video demonstrating how I hurl insulin. I’m sure you can fill in the blanks on how things have been going since my last update…

I was describing to someone new to diabetes how I “chuck my pen like a dart”, and realized that my silly metaphor was causing confusion instead of providing reassurance on how easy injecting insulin can be.

A couple points:

  • Insulin pens are awesome and syringes give me the willies.
  • Hold the pen like a dart, lightly between your fingers.
  • With the cap on, practice pretending to “throw” the pen like a dart. A single, smooth motion moving at a reasonable pace.
  • Do NOT put the needle up to your skin and push it in.
  • I much prefer my hips or the side of my fat tire to my belly.

With this, 99% of the time I don’t feel the injection at all, and wouldn’t know that I had just poked myself if I wasn’t watching.