Kim over at TextingMyPancreas.com has created an amazing project that you need to take a look at. It’s called the You Can Do This Project, and it is a collection of videos and blog posts created by and for people with diabetes. Here is my contribution (and my first vlog ever!).
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.
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.
Fireflight is a band that you’ve probably never heard of, so I hope you’ll humor me for a moment and let me give you an introduction. A Florida-based Christian rock band, Fireflight has put out three albums of music that just connects. After listening to their albums dozens of times, the songs are always the same, but I change, and I can identify with different songs at different times.
Now, I realize that some folks read the words “Christian rock band” and have probably already stopped reading this post. That’s okay. The beauty of music is that it appeals to so many and not to everyone, at the same time. I’m diverse in my music preferences, which includes an affinity for metal bands such as Stone Sour, punk bands such as Green Day, pop bands such as Paramore, and even swing and jump blues bands such as Brian Setzer Orchestra.
For those of you still reading, there is a song out by Fireflight right now called “What I’ve Overcome.” This song is about the times when we fall down, and how much stronger we become when we find the strength to pick ourselves back up. It’s also about how much stronger we become when we have faith, and allow ourselves to be picked back up again by something bigger than just us.
The main line of the chorus of the song is, “I’m not what I have done, I’m what I’ve overcome.” We have all had struggles in our past. Many of us are struggling right now. For me, this song serves as a source of encouragement that we can overcome our challenges if we have faith, if we push forward, and if we can somehow find a way to use our past to fuel our future. In my world, that applies to a lot more than just diabetes. Maybe that fuel is finding faith in God. Maybe that fuel is accepting the things that we cannot change. Maybe that fuel is exactly what the lyrics of the song say, that we find grace, and healing.
Whatever it is that enables us to heal and move forward and overcome the ugly things in this world, I know that it is powerful, and I know that sometimes when I feel helpless, the only solution that works for me is to simply let go…and trust. When the chains that are holding us down are broken, and we rise up, that is when we are no longer defined by what holds us back, but rather by what holds us upright.
If you’ve had diabetes for very long, then you’ve probably found yourself at some point with a low blood sugar that scares you enough to do some wild things to get your numbers back to normal. In hindsight, what you had to go through to treat that low can not only be a learning experience, but also hilarious, gross, or just plain entertaining. Sharing is caring, so I thought I’d list a few times over my many years with diabetes when I went too low and desperation took over, and the whacky events that followed.
I was at work late one night in my office, alone, and had a low BG. This was before the days that I developed the good sense to carry glucose and glucose tabs around with me. Not being able to find anything in my own desk to eat, and no one to tell that I needed help, I dragged myself to an office a few doors down and went through a coworker’s desk until I found these awful, dry, sugar-crusted jelly bean type fruity shaped things of a questionable age, and ate half the container. They were really terrible, but they were pure sugar and got the job done. I sat there at the desk until the shakes and sweating finally went away. Once I could think semi-clearly, I was afraid my coworker would be mad at me for raiding their secret stash, so I arranged the treats so that it didn’t look like I had eaten as many as I did, and then put them back where I had found them. I hope they weren’t a gift. If they were…um…thanks?
Something that has always amazed me is how I can go low while sitting at the table eating a meal. It’s the most bizarre and frustrating thing. I’m eating already! What more do you want?! One day I went to lunch with a coworker, and we were having a seemingly normal discussion, until I realized that my half of the conversation was coming out in me making farting noises instead of words. My coworker had a background in nursing and was looking at me strange and knew that something wasn’t right, but had not made the connection to low blood sugar yet. Knowing me at the time, I probably hadn’t divulged that I even had diabetes up until that point either. The waitress had just dropped off drinks at the table next to us, so in my autopilot survival mode I reached over and took the the regular Coke of the poor guy sitting there who just happened to be at the mercy of my low BG lunatic craze by proximity. It was a quick save, and the guy was quite understanding, but it made for a really awkward remainder of the lunch hour.
How To Meet People at a Conference
Diabetes likes to come out and play at fancy events. I was at a dinner at a conference one evening with my boss, and it was in one of those big dark rooms where you sit at round tables with ten other people who are all wearing the same dorky name tag lanyards around their necks. I thought I was feeling low, but didn’t have enough light to do a BG test in the room, so I grabbed my kit and excused myself to the restroom. Later, I recall becoming aware of the fact that I was sitting at the wrong table on the opposite side of the room eating dinner with a bunch of complete strangers, with no concept of how much time had actually passed. I guess autopilot had taken over and I had grabbed the first opportunity I could find to get food in me. Fortunately, I was wearing a dorky name tag lanyard, so I fit right in. Embarrassed, but not about to let anyone else know my low BG blunder, I excused myself from that table and crept through the dark back to where I had started. My boss commented, “We wondered if you were coming back. Is everything okay?” As I unrolled my second set of silverware and prepared to have dinner number two, I replied, “Oh yes, I met some interesting people and got to talking and time got away from me.” Liar, liar, pants on fire! I should have been crowned King of Denial that night.
I can feel it. It is slithering in like a snake through murky water. It makes little ripples as it moves in, just enough to sense it if you’re looking for it, but not enough to visibly disturb the peace and calm of everyday life. It is sneaky, resting still when you’re looking for it the hardest, hiding in plain sight. When you’re back is turned, it is busy, wrapping itself around everything that is good and dragging it under the surface, dominating.
It makes things heavy, without trying to lift anything. It makes my heart pound, even when I’m calm. It makes me want to cry, but the tears just won’t come. It makes me want to scream, but the effort is too great. It makes me want to fight, when I have nothing to fight about. It makes me forget hunger. It makes sleep something that I can only appreciate because I hear others talk about it.
It is awful.
It makes things awful.
It makes me feel awful.
After all my years with diabetes, it wasn’t until very recently that I learned that depression and diabetes go together like stink and manure. A quick Google search will tell you that depression from diabetes is due to the the daily stress of diabetes management. All the pricking and poking and stabbing and pinching and squeezing and dabbing and dripping and wiping and changing and checking and fixing and… Okay, I can certainly see how someone would get to that conclusion. Diabetes management is exhausting, and maybe that is part of the depression and diabetes picture, but it isn’t all of it.
Some sources say that it is the consequences of diabetes that drives depression. Things like nerve damage, loss of sight, loss of feeling in feet and hands, and weight gain all contribute to this sense of hopelessness. Having had diabetes for 30 years, I don’t subscribe to that. The consequences of diabetes certainly are nothing to shrug off, but I know many people with diabetes today, and those that do have diabetes complications definitely do not let those complications rule their lives. These are some of the most admirable people I know, who carry on in a daily pursuit of contributing to the world and helping other people. That is their focus, so no, I don’t subscribe to the “Oh, woe is me…” reason for depression when you have diabetes.
Sources even say that depression is the reason for depression with diabetes. No, that isn’t a typo or me repeating myself. Many sites, including the ADA, say that because of depression we slack on good diabetes care practices like regular blood glucose testing, eating right, routine exercise, and sometimes even insulin dosing. While slacking off due to depression our health declines, and then we feel bad about it, unintentionally making matters worse.
Something that doesn’t get reported enough is the science that also comes into play with depression and diabetes. In Will Dubois’s book “The Born-Again Diabetic,” he points out the often overlooked malfunction in the serotonin level production of people with diabetes, which can affect mood and cause depression. Will believes that all people with diabetes should be on anti-depression medications, and I’m starting to agree with him. Diabetes is hard enough without having to deal with feeling awful about it for no apparent reason.
The problem I have with depression, besides the general feeling of “blah” that comes with it, is that there is still such a taboo about it. I have a hard time admitting it to myself when I get depressed. Even now, I’m not certain that what I’m feeling is indeed depression. It could just be that I’m worn out from all the stresses of work, life, and responsibilities. Nevertheless, once I can admit to myself that I’m having a bout with depression, I start to blame myself for it. Maybe it is because I haven’t been taking as good of care with my diabetes as I could. Maybe I haven’t been making time to exercise as much as I should. Maybe I haven’t been eating as well, letting excessive carbohydrates creep into my diet more than I should. Never in all my maybe’s do I stop to say, “Maybe what I’m dealing with is something that has nothing at all to do with anything that I’ve done.”
I have felt it all day today. I’m upset, for no reason. I’m aggravated and annoyed, when I have absolutely nothing to be aggravated and annoyed about. I’m tired, yet I can’t rest. I’m not hungry, yet I haven’t had anything more than a pot of coffee today. I don’t know what is wrong with me. I just know I’m not me.
I have an endo appointment coming up in a couple of weeks, and perhaps I will ask him about it. But I probably won’t. As unrealistic as I know it is, there is a part of me that is afraid I’ll be judged as being weak because I can’t deal with things on my own; that I shouldn’t feel the way I do, and the way I feel is nobody’s fault but my own. I don’t want another prescription to pay for either, another pill to take, and another something to have to do on a daily basis. I’m also as stubborn as a mule, and I don’t want everyone trying to fix me and telling me what I need to do. I really don’t want anyone telling me what to do right now. (I know, I’m real mature like that. [sarcasm]) That sort of mentality is probably why the ADA says that depression begets depression. Writing this post took a tremendous amount of my courage, and I just don’t know if I have enough left to face depression (if that is even what this is) head on in the clinical setting.
I’m trying my best to get through this funk. As much patience as I need from others, I also need to be patient with myself when it comes to navigating my way through it all. I’m going to stop stressing over the fact that I can’t keep a CGM sensor on my body for more than 24 hours before it falls off, no matter what kind of sticky substance I put on or over it, and keep trying to find a solution that works. I’m not going to stress out over whatever my next A1C is going to be, and just focus on getting through diabetes one day at a time. I’m going to try to not carry around the guilt of low blood sugars that sometimes happen that I need help with. I’m going to start riding my bicycle again, because there is no room for all this baggage on the road bike, and it is really hard to have a bad day after you’ve started with a good bike ride in the morning. I’m going to get things that are broken fixed, so I can stop looking at broken things (like my TV, washing machine, and my old cruiser bicycle).
I’m going to do what I do best: Focus on the positive.
And somehow through all of this, I will get the most important broken thing of all fixed…me.
Last week I took my medical librarian know-how to the classroom to teach a group of doctors how to find and use medical images for their research and teaching methods. As I was leaning over helping one of them learn how to successfully manipulate an image, I overheard a couple of doctors behind me chatting about me, or more precisely, “that thing on his side.”
I wasn’t mic’d for sound (this time), as the room was plenty small enough and I was able to project my voice plenty loud enough to not need to be wired into the room’s audio. When I overheard them, I didn’t jump right around and whip out my broken pancreas club membership card and secret handshake. Instead, I chose to let them go for a bit. After all, they are doctors and far smarter than I am. Surely they can figure out what that contraption is on my side, right?
They spent only a few moments debating about whether or not it was a wireless microphone, and moved on to the temporary conclusion that it must be the clicker for my PowerPoint presentation. Granted, I was using a PowerPoint clicker, but that was in my hand. I like to imagine I’m a weatherman when I get to use the PowerPoint clicker. Nevertheless, moving on…
Maybe the light hit me just right, or maybe I turned at just the right angle, but finally I heard one of them say, “Oh, that’s an insulin pump. He must have diabetes.” Followed by a pause for consideration. Then one of them said, “That’s impressive.”
Pride. That’s what I felt. Not for me so much, but for those of us who quietly live everyday with diabetes and don’t let it stop us from making a difference in the lives of others. We don’t let it stop us from helping others. We don’t let diabetes stop us from doing anything.
I never had a chance to acknowledge their overheard conversation, but I like to imagine that they went back to their hospital or their practice the next day and told their colleagues about how good of a class they took, and how this charming and incredibly attractive guy kept them engaged, learning, and laughing for a solid two hours. I hope that they got a glimpse of someone with diabetes who was thriving, living, and making a difference in the lives and abilities of others. At that point, I wasn’t a patient, or someone that needed their medical advice, or their prescriptions, or their years of medical education and experience.
I hope that they appreciated that diabetes was there in the room with us, but that it wasn’t in the spotlight. Because I certainly did.