Endocrinologist

I Lied

This is my first post on Diabetically Speaking in a really, really long time. The last thing I published here was on October 23, 2015. 988 days ago. It’s not that I haven’t been doing diabetes things, I just haven’t been doing them here. So what inspired me to post now, after all this time? Well, I had an appointment with my endocrinologist today and…

I lied.

I lied a lot.

I didn’t mean to. The lies just started, and they kept falling out of my mouth, and I couldn’t stop myself.

liabetes

The nurse called me to the back and we went through the usual rigmarole of height, weight, and other fun basics. No problem there, except I remain confused why they measure me for height every time I’m there. Are they trying to pinpoint the moment when all of the hours spent hovering over a keyboard and glaring at a computer screen finally leaves me with a hunched back and and a driver’s license that needs updating? Why can’t they just accept that I’m 7 feet tall like I tell them? (I’m 5’8″.)

Then the nurse and I sat down together, which is cool, and we started working our way through all the little dings that the electronic medical record wants updated.

Are you still on Novolog? Yes. (Honest answer.)

Are you still on a pump? Yes. (Honest answer.)

Is your insulin to carbohydrates ratio the same? Yes. (Honest answer.)

Are you still using approximately the same daily amount of insulin? Yes. (Honest answer. I’m on a DIY closed-loop system, so it varies. But overall, sure. Let’s go with that.)

Are you still using OneTouch strips? Yes. (Honest answer)

And then it happened…

Are you checking your blood sugar at least 4 times a day? Yes. (Honest answer.) And no. (Also an honest answer.) *cue the awkward Nurse pause*

I have the Dexcom G5 continuous glucose monitoring system. I check my blood sugar dozens of times a day. Some days, maybe even 100 times a day. I can do this because I wear a sensor, and I can see my blood sugar on my phone and whether it is trending up or down or holding steady in near real-time at any given moment. The G5 systems requires me to calibrate it twice a day. So if we’re counting fingerpricks, I do that twice a day. Rarely more than that simply because it’s unnecessary unless something weird is happening (like if I feel low, but my Dexcom says I’m not… I have trust issues).

trustfund

My health insurance wants to know that I am pricking my finger at least 4 times a day. To them, that means I’m staying on top of my diabetes and all the silly and incessant decisions that it requires every single moment of every single day. So, I lied. Yes, I prick my finger 4 times a day. If you ask me for my logs, I’ll lie then too. BECAUSE IT DOESN’T MATTER HOW MANY TIMES YOU ARE PRICKING YOUR FINGER WHEN YOU ARE MONITORING YOUR BLOOD SUGAR 24/7 WITH A CGM.

Are you still taking your statin? Yes. (Total lie. I should be. I’m just not. Mainly because I forget. In my defense, I did walk that lie back a little and confessed that I need to do a better job of taking my statin regularly. Small victories.)

Are you exercising regularly? Yes, when I can. (Liar. I work at a university, and take classes, so I walk across campus almost every day. Is that exercise? I mean, it’s better than sitting on my duff and not doing anything. But I’m not getting that heart rate up and pushing any boundaries. So definitely room for improvement.)

Are you in any pain right now? No. (Why are you doing this?! You literally can’t write with a pen and pencil anymore without having to shake the pain out of your carpel tunnel riddled hands!)

Have you felt down, blue, depressed in the past week or two? No, I’m fine. (Help me! I am literally seeing a therapist (recent occurrence) to try to figure out how to manage my depression, deal with being overwhelmed almost every moment of every day, figure out how to be happy more consistently, and how to unpack and process things in my life that I do not have the tools to know how to deal with. I’m a picture of success on the surface, and an absolute mess underneath it all. I’m highly productive, and I keep most of my problems inside. I feel extremely vulnerable even sharing this paragraph. Ugh. Gross. I’ll probably just keep lying about this one.)

imfine_helpme

Source: https://weheartit.com/entry/28685038

The visit was relatively uneventful. Mainly because I lied. A lot. But the thing is, why did I feel like I had to lie in the first place? Shouldn’t I be trusting these people to help me, to make me the best I can be, to guide me toward living to be 400 years old? I’d probably be Hobbit-sized by then if they keep checking my height, but at least I’d be as healthy of a Bagginses as I could be.

gollum_truth_notlistening

This sounds like I’m assigning the blame to someone else, but hear me out. I’ll own my lies, but it is important to realize that there is a reason for them. The reason is a systemic problem in our healthcare system. We are encouraged to lie to our healthcare professional partners all the time. The lies are even incentivized!

If we don’t lie, then we admit that we are imperfect humans, and our health insurance then has reason to deny our claims, charge us higher premiums or additional fees, or even cancel our coverage altogether. Bagginses don’t like punishments. That doesn’t happen in ever case, and shouldn’t happen in ANY case, but it does. So many of us have been denied coverage of some necessary medical device, medication, or treatment, and had to fight an uphill battle to appeal to a name without a face that we truly do need whatever it is to live with or overcome our condition.

If we lie, we can sleep at night, resting assured that we have insulin, strips, needles, pens, pump supplies, CGM sensors and transmitters, and the infinite recipe of other medications and supplies that go along with our living well with diabetes and any other chronic condition the world may throw at us. Sometimes, many times, lying is easier than being honest.

I really wish our healthcare system would stop making us lie to them. I wish these electronic medical record systems would stop trying to quantify what it means to be well and be sick. I’m a researcher, so I get it, data is important. But data is useless when it is so blatant that you are simply collecting metrics. That is when you get rote answers, and lose the humanity that should be paramount to everyone’s participation in healthcare.

anthonybourdain_withtattoosRecently we all lost Anthony Bourdain, and he was a master at asking very simple questions that allowed the people he interviewed to open up to him. I want my healthcare people to do the same with me. Sit down with me, away from the computer, and ask me very simple questions. How are you doing? What brings you in today? What is one thing I can do to help make your life better today? As Anthony Bourdain did with the people he met, ask me, directly and compassionately, what makes you happy?

I promise I won’t lie.

OMG Scale

Prendojitters

I’ve got the Prendojitters, and maybe even a new entry to the Diabetes Terms of Endearment. You’ve probably contracted the Prendojitters before too, but you just didn’t know what to call this particular collection of symptoms. The Prendojitters are a collection of nerves, angst, and apprehension that you get before an upcoming endocrinologist appointment. Thus, pre-endo-jitters…Prendojitters.

It takes a couple of weeks for the Prendojitters to fully present themselves. They start with a mild case of reflection. You look back at the last few months of your life with diabetes and start to examine and evaluate how well you have been taking care of things. No matter how well your diabetes has been managed, if you’re anything like me, you’re probably overly critical of yourself. Maybe you haven’t done as many BG checks as you should have. Maybe you haven’t been wearing your CGM sensor around the clock like you had planned to do when you went into debt to buy the thing. Maybe you’ve let a few too many desserts invade your sensible diet, derailing your weight loss efforts and sabotaging your summer beach body.

OMG Scale

Once you’ve given all these self-defeating thoughts a breath of existence, your case of Prendojitters progresses to the next level. You can diagnose yourself with stage two of the Prendojitters when you find yourself unceremoniously scrutinizing data. You compare your weight at your last doctor appointment with what that lying bastard of a scale in your bathroom is telling you now. You look at that last A1C and marvel at how good or bad it was, and go to work convincing yourself that this next one is going to be far worse and even less explainable. You look at your daily carb counts and exercise efforts from the logs you’ve been keeping (Right? Riiiiiight.) and settle on the data driven fact that you’ve been having too much of the former and not near enough of the latter.

In a blink, your Prendojitters progress to stage three, the third and final stage before intervention is scheduled to occur. Now you are at full alert to everything that is going into your mouth, every fingerprick and blood drop squeezed, every unit of insulin entering your subcutaneous layer, and every BG altering activity that you might be engaged in. The anxiety of the upcoming visit with your endo has sculpted you into a well-oiled diabetes managing machine.

Unfortunately, it is going to have little to no effect on your weight, A1C, cholesterol, or chances of winning the lottery, because your appointment is tomorrow morning and you’ve just caught on to what you should have been doing all along. So what do you do?

You finally relax a little in the blissfulness of seemingly defeat. You go see the endo, and then realize that things aren’t quite as bad as you worked yourself up to believing. Your endo is on your side, and he gets it: Diabetes is a lot of work to keep up with, and not every progress report is necessarily going to be all sunshine and daffodils with flying unicorns that poop sprinkles and sneeze glitter onto carbohydrate free cupcakes.

And just like that your Prendojitters are cured…until next time.

Emergency Low Kit

5.6 Degrees of Frustration

I like reading about the experiences my friends in the DOC have when they go to their diabetes doctor appointments. Good experiences or bad, it teaches me a lot about what I want and need from my own endo, and things I should be thinking about.

For example, it’s no secret that diabetes and heart disease are BFF’s. Observing the thoughts and conversations that are shared in the DOC about statins, ACE inhibitors, blood pressure, cholesterol, and the effects on the heart of sticking your finger in electrical sockets makes me realize that I  don’t give this component of my life with diabetes near enough attention.

At my endo appointment last Friday, we talked about some of these things. No mention was made about my weight, but I know that I want to be lighter than I am. I’ve lost 7 pounds thus far with the switch to a low-carb lifestyle, and am making satisfactory progress toward my goals, so I have to take things one step at a time on that front.

My blood pressure was normal, so that was good. I’m not one of those folks that shoves an arm in the free cuff & fluff machines at the store, EVER, so if the endo says I’m good and it isn’t an issue right now, I’m taking that and rolling with it. He did order a full lab workup for my next visit, which should add all kinds of interesting new data points to talk about.

The results of the BIG test on Friday, that almighty diabetes report card mother of all tests, the A1C, took the wind out of my sails. I set a goal at the beginning of this year to get my A1C down to 6.2 or better. On Friday, my A1C was 5.6. I have never had an A1C in the 5’s before, so I should be celebrating that, and throwing myself a party. Instead, I feel like a failure.

Diabetes is a candle burning at both ends. You can monitor your BG’s closely, and stay as close to on top of everything as possible, but often when you focus too hard on one problem (too many highs) and fix that, you end up with another problem (too many lows). Diabetes doesn’t give very much room for error, and that frustrates me. Maintaining perfect blood sugar control is like trying to balance on a tight rope, hanging over a cliff, while juggling bowling pins and riding a unicycle. It’s possible, but good grief it requires a lot of attention!

I want to celebrate a 5.6 A1C. I want to upload my pump & BG data to my endo’s computer and see on the screen that I am an all-star diabetic, with nearly flat data charts with very few low or high BG’s. I want to EARN that 5.X A1C, and that is where I feel like I have failed. I did not earn my 5.6 on my terms. I have managed to keep from having very many high BG’s, but in turn I have had way too many lows, some dangerously low, and it leaves me screaming at my diabetes, “I just cannot win with you!” Then I throw a pot and pan at it, tell it to get out of my sight, and pour myself a big glass of Diet Coke and have a good cry while watching an ASPCA commercial. Don’t judge, you know you tear up too every time you see one of those commercials and those poor animals that need loving and adopting.

Friday was a bad day, but it progressively got better the more I digested that 5.6 A1C. It could be so much worse. That 5.6 could have come with severe low side effects, including occurrences of unconsciousness, seizures, ambulance trips to the Emergency Room, car accidents, or the inability to shut up while talking nonsense in front of a crowd of people. It could have resulted in the embarrassment of a low while at work and my coworkers having to help me. It could have included feelings of shame and inadequacy because I needed someone in a way that I can never repay.

My endo and I talked about what I have to treat a low. I have not had a Glucagon pen in…well, maybe not since I lived at home with my parents. That was 13 years ago. It wasn’t until this last year that I even kept a stock of glucose tabs. It’s really a wonder how I survived so many years without them. I did keep glucose gel, so I guess that is worth something, and keeps me from being a total bad diabetic. Now, however, I have an “Emergency Low Kit” so that I have as many weapons in my arsenal as possible to combat diabetes.

Emergency Low Kit

My "Emergency Low Kit" including Glucagon and glucose gel & tabs

I have settled on the fact that it is 100% okay for me to be frustrated with diabetes and an A1C of 5.6 that I don’t feel I earned by being an all-star diabetic. I have settled on the fact that I am going to be working closer with my CDE to adjust my basal rates so that I don’t have so many lows, and still avoid those highs as well. I have settled on the fact that there is no such thing as a perfect diabetic, but striving to be one may very well have played a part in keeping me alive and healthy all these years, and I don’t intend to stop now. I have settled on the fact that there are side effects to diabetes that I absolutely can control, and some that I cannot do a damn thing about.

Diabetes had just better get settled with the fact that I’m not going anywhere, and there is a good possibility that I am more stubborn than it could ever dream of being.

Stuart Smalley

Endo Affirmations

When I set my goals at the beginning of this year, #1 on my list was to get my A1C down to a 6.2 or better. That is a formidable goal, trying to achieve an average blood glucose over time of around 120, depending on what research you consult. At my last endo appointment back in December of last year, my A1C was still reasonable, but it had ticked upwards. I couldn’t let that upward trend continue.

I had gotten my Continuous Glucose Monitor (CGM) and new pump just after my previous appointment in September of last year, and with all the change, I was burnt out. Or maybe just overwhelmed. But really, is there a difference?

I was wearing my CGM intermittently, and was dealing with major information overload with all the beeping and pricking and checking and counting and pumping and beeping and…I was exhausted.

After I wrote my A1C down in my notes, and realized that I had allowed my control to slip in the short three months since my previous appointment, I knew that I had to turn the ship around. I don’t want my A1C to continually creep northward, and me pay for it with problems down the road. I have too much life and dreams ahead of me to get lax with my diabetes management.

So I sat myself down and gave myself a stern talking to. I said to myself, “Self, all is not lost. I want you to look in that mirror, and I want you to repeat after me. I can do better. I have some awesome tools to help me get to where I know I can be. I can wear my CGM all the time, and not take several days off between sensor changes. I can carry around glucose tabs right there in my little pocket to treat a low. I don’t have to be a great diabetic. All I have to do is be the best Martin I can be. Because I’m good enough, I’m smart enough, and doggone it, people like me.”

Stuart Smalley

Daily Affirmations with Stuart Smalley

 

I’m glad we had that talk. Since then, I’ve done really well with wearing my CGM. Every time the sensor battery runs out of juice, it hits the charger, and I’m already putting a new site in and getting everything ready for another round. I’ve gotten to where I really don’t enjoy being without my CGM, and am hoping that I didn’t do too much damage for all the years before now when amazing technology like this didn’t exist.

Lows are still creeping around occasionally, but they are manageable. Nothing a few glucose tabs can’t fix in a pinch. I expect my CDE and endo to want to make some adjustments, and I’m open to that. I’ve started a low-carb journey now, so I don’t expect that I need as much basal rate insulin at certain times of the day as I did with a diet heavier in starches.

Something else that I’m not happy with myself about is that I let myself get lazy, and stopped exercising the way I physically and mentally need to. The scale showed me the truth about that. So far I have lost six pounds, down to 184 lbs. It’s not a lot, but it’s progress, and that is the most important thing right now, to be moving forward. I’m making some big changes to my lifestyle to eat smarter and make better choices. I have my eye on my goal cycling weight, and to slim up and firm up so I look good naked, or at least in a swimsuit. Yes, I’m vain like that.

Back to the A1C, I know that we can’t base our entire diabetes report card on the A1C alone, but it still resonates with all of us where we are in our journey with diabetes when we see that number. I am confident about this upcoming appointment. I am determined. I have a plan. And it’s true, I don’t have to be the best diabetic. I just have to be the best Martin I can be. The rest will find its proper place.

Firetruck Exam Table

Endo Anxiety

Tomorrow I finally get to see my endo. This city has few endocrinologists, but I grew up seeing this doctor as my pediatric endocrinologist and he knows both me and my history, so it makes sense that I see him now. It’s a good start…er, restart…at least. As it stands now, I am his oldest patient (at 31). I wonder sometimes if it would be awkward to talk with him about my adult life and living with Type 1 diabetes while sitting on a firetruck examination table.

Firetruck Exam Table

Anyway, moving on…

It has been a year since I’ve been to my endo. Maybe I didn’t go mid-year because I’ve been busy with work. Maybe I didn’t go because every time I thought about it I was out of town. Or I can be practical and say that maybe I put it off because my insulin and supply prescriptions didn’t need to be refilled until now anyway. Truthfully, it is probably because I have to live with diabetes every single day and just don’t want to deal with all of the hubbub and aggravation that comes with doctor appointments anymore than absolutely necessary (endo appointments, ophthalmologist appointments, PCP appointments, scheduling lab work, the dentist, etc…all of which I’m due for). Procrastination at its best!

It is hard for me to get my many experiences with hostile doctors out of my head when I have to find a new one and schedule appointments. You know the type. They tell you how you aren’t taking care of yourself, that you aren’t doing this or that right, shame on you for not doing what they told you to do last time, how they have other patients just like you who are in bad health (which I don’t get how that makes them “just like me”…but whatevs), and pretty much just make you feel like you are wasting their time and you’re a complete slacker when it comes to taking care of yourself. Too much gloom and doom, and I despise being blamed for having diabetes, as if it’s my fault and I caused this.

Fortunately, not every doctor is like this. Hopefully, not even the majority of them are like this. I know when I lived in south Florida, I loved my endo there. She was great, on top of things, and I could actually call her with questions (what a concept!). I hope I can have that sort of relationship with my old endo here in north Florida as an adult.

Living with diabetes is a rollercoaster. I can exercise every single day, count every single thing that goes in my mouth, check my blood sugar a dozen times a day, and still be challenged by the unpredictability of diabetes. I need a health team that gets that, not one that holds it against me and makes me feel like a failure. When it comes down to it, I probably know as much or more about living with diabetes as they do. I’ve yet to find a doctor who actually has diabetes themselves. I need to know about the science of managing diabetes, and the technology and treatments available that can improve my quality of life. I need a doctor and/or CDE who will listen to me, be patient, talk with me, help me understand, write my prescriptions, be compassionate, and give me their outside-looking-in viewpoint. I’m hard enough on myself, I don’t need someone else to do that for me.

I know me. Tomorrow morning I’ll be nervous, my heart rate will be elevated, and my blood pressure will be up. It doesn’t matter if I’ve seen the doctor 100 times, it is always difficult for me to find that comfort zone that allows me to just chill the heck out. So tonight I will get ready for my appointment, and follow some of the suggestions that my friend Mike (@mydiabeticheart) shared recently about preparing for a doctor visit. I’ll make sure I have my meter, my pump (as if I can forget that!), and my prescriptions that need to be refilled. I’ll write down my list of questions, especially considering that I need a new pump and I am very interested to find out if my endo has had any success in getting insurance companies to approve coverage of CGM. I’ll ask about the numbness in my hand, and if that is more likely to be from working on a computer all day or diabetes. I’ll also find out what my A1C is tomorrow, aka “the diabetic’s report card”, and determine whether I deserve to pat myself on the back, or if I should go to confession (like @txtngmypancreas).