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Diabetically Speaking

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Seeing Things

I’m finally learning to accept some things. Not everything, but some things.

For example, I’ve learned to accept that cooked carrots and mushrooms are disgusting and have no place on the food pyramid. Except maybe underneath the pyramid, as compost, to grow delicious things. Like fried chicken strip trees.

I’ve learned that my dog doesn’t really detect low blood sugars like I imagine he does in my low-brained head. He just likes spoonfuls of peanut butter at 3:30 in the morning. And who doesn’t love that?

A big thing that I’ve learned to accept (sort of…okay, not really) is that I get nervous when it comes to tests. Or things that I perceive as tests, like doctor visits. I don’t know why, but I always dread these appointments. In my head, they are the worst, even though 99% of the time they turn out just fine. It defies explanation.

As well as my life has been with diabetes, my imagination has a tendency to run wild and make things up that don’t necessarily reflect the reality of what I do everyday with diabetes. I think my anxiety is because diabetes is like a really crappy retirement plan: You make decisions based on data every single day in hopes that your annual account statement doesn’t show that you’ve invested all your efforts into a poop factory.

Earlier this week I went to the eye doctor, or more specifically, the ophthalmologist. This is where they check my eyeballs and retinas and all the tiny little veins and capillaries and doohickeys that keep them working to make sure that I have my diabetes in good control and that complications aren’t running rampant in my eyeball holes and causing irreparable damage to my vision and kidneys (which are connected to my eyeballs, somehow). I’m sure it’s a little more complicated than that, but that’s basically the big idea.

I was extremely nervous. Anxious. Full on shakytown while waiting to sign in. It didn’t help that the receptionist had a look on her face like she had just bitten into a piece of cat litter in her sandwich. She wasn’t rude by any means, just not exceptionally welcoming. In her defense, my appointment was at 1:00pm, and she was probably hungry. Plus, cat litter in your sandwich isn’t pleasant no matter how famished you are.

After I signed in, I barely had time to do a quick BG check before they called me back (it was 89, by the way…perfection). The nurse was super nice, but I could tell she hadn’t really been exposed to too many people with Type 1 diabetes before. We went through the standard form field questions for an eye doctor appointment: Height, weight, do you wear glasses, do you have any health problems, what kind of insulin do you use, what book are you going to try to read after we dilate your eyes, will you please put your phone away, did you just roll your eyes at me? You know, the usual.

I told her that my blood pressure was probably a little high because I was very nervous. It was, and wasn’t a big deal at all. She said, very friendly-like, “You should be used to this for as long as you have had diabetes.” I just smiled and laughed. Truth is, I’ve never gotten used to it. I don’t think I ever will.

The biggest disconnect was when she asked, “What was your blood sugar this morning?” I fumbled for an answer. That was at least three checks ago. I don’t remember that kind of information. That’s what BG meters and insulin pumps are for. I have more important questions to answer from my short term memory. Like, where did I park my car? What pocket is my cell phone in? How did I think these clothes matched this morning when I got dressed? I told her what my last BG was, and just went with that. One BG on my patient chart out of all the data points that I depend on every day to keep myself alive really makes zero difference in the grand scheme of things.

So we got through the formalities, and then I met with my ophthalmologist. Through all of the anxiety and nervousness, the experience was rather uneventful, which is a good thing. Bottom line, my eyes look the same as they did when I saw my ophthalmologist two years ago. Very microscopic evidence of having had Type 1 diabetes for almost 32 years, but nothing at all to be worried about. No blood vessels bleeding into the back of my eyes. No kidneys waving white flags of surrender. All in all, a clean bill of health, and a free joke about me being the oldest “kid” that my pediatric endocrinologist still sees on a regular basis.

I’ll take it. Growing up is overrated anyway.

Bindi Glasses

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.

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.

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.

I Thought I Thaw an Ophthalmologist

I did, I did, I did thee an ophthalmologist!

I went to the ophthalmologist for the first time in three years today. I’m so good about keeping my appointments with my endo, but the other appointments just seem to get neglected more than respected. Maybe it’s because they aren’t prescribing me insulin. In any case…

It wasn’t without reason that I haven’t been to the ophthalmologist in three years. After a few visits, my last eye doctor and I were no longer able to see…um, eye to eye. I remember the day well. It was a sunny day in south Florida (like so many of them), and I had left work early to go to my annual eye exam. I went through the usual steps of signing in, getting my vision screening, eyes dilated, and squinting at the TV to try and read the news ticker with blurry vision. Always a fun game in the eye doctor waiting room. Finally, I went back to see the doctor, and he proceeded to look in my eyes with his little bright lights and explain to me how us people with diabetes just don’t take care of ourselves and it’s our fault for being in the shape we’re in. He continued to tell me that I had spots on the backs of my eyes from diabetes retinopathy that were leaking and cataracts. I was 28 years old, and had lived with diabetes for 26 of them.

Unlike John Boehner, it’s hard to make me cry. I have a tendency to throw up walls and block things out. But that appointment managed to get inside my walls, and I broke down. The technician couldn’t get a picture of my eyeball to put in my file because of the tears. That visit was a disaster, I was a failure, and I had just been told that my failure was nobody’s fault but my own. No wonder PWD’s struggle with guilt.

The sun was bright that day, so I sat down in the lobby after my appointment to wait for the sun to go down a bit more before driving home with my eyes dilated. That’s when I got to thinking. My A1C was in the 6 percentile. I was 175 pounds and put over 200 miles a week on my bicycle. I didn’t smoke, and only drank on rare occasions. I kept regular appointments with my endo, and wore my lab numbers with pride. How dare that doctor blame me for my diabetes! Which was about the time I marched back to the exam rooms and set the record straight for him in front of his staff.

So three years passed without my going to another eye doctor appointment.

At a recent diabetes meet-up, a friend recommended me to her eye doctor. Seeing as how my good glasses are broken now and I’m wandering around in my backups with their scratched lenses and all their glory, it was time to try it again, so I bit the bullet and made the appointment.

Today was a completely different experience, and for that I am so thankful. My vision screening went well (20/50 in both eyes without glasses, 20/20 with). Everyone I met at the doctor’s office was very polite, patient, and respectful. They answered my librarian brain fueled list of questions without showing any signs of annoyance or judgment. My new eye doctor understood the differences between the various types of diabetes, and was very encouraging. He did find a couple very minor spots on both eyes, but no leaks and no cataracts, and he said that I have nothing at all to be concerned about, especially not for someone who has had diabetes for 29 years and taken care of it like I have.

Sometimes it feels damn good to have someone pat you on the back and say, “Good job!”

Plus, I got a prescription for new glasses now, and I’m going to save my pennies and reward myself with a pair of these…

Livestrong Glasses
Oakley Black Livestrong glasses...yes please!

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).

Fun With An ENT

Last week I had a 3-day meeting out of town with library colleagues from across the state. As successful as the meeting was, I was plagued the whole time by a clogged left ear, which has resulted in muffled sound for the past couple of weeks.

The meeting was challenging enough being engaged throughout 14 hour days, not being able to excuse myself to check my BG as often as I would have liked, and enjoying uber-delicious food in the evenings with little regard to what effects it was going to have on my BG (not to mention my waistline). When they are serving macaroni and cheese made with truffle oil and a crunchy breadcrumb top, you’ve got to just take what life is giving you, and be damned the consequences.

But now that I’m back home, I decided to see an ENT to figure out why my ear sounds like it has a cotton ball stuffed in it. His diagnosis is that I have fluid behind my left eardrum, and it just needs time to drain. In other words, I paid for an expert to tell me to keep doing what I’ve been doing…nothing. At least I know it’s not infected, so I can live with that.

He also checked my tonsils, and asked if I have sleep apnea or snore a lot. Anyone who has ever spent the night with me may argue, but I said no, not enough to join Snorers Anonymous. “Hi, my name is Martin, and I am a Snork.”

Snorks

The ENT’s advice was for me not to put on any weight, because I have the characteristics of someone who could put on weight and have breathing problems. Despite the immediate urge to choke the guy, with a completely straight face I looked at him and asked, “Did you just call me fat?”

I am nothing without a sense of humor.

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