How much quality of life do I sacrifice in order to hopefully live longer? How much crazy making can I handle in my life right now? What defines “excessive worry” and “appropriate action”?
I filled the prescription for the new drug “Invokana” two weeks ago. But every evening when I take it, I ask myself questions I don’t know the answers to. Invokana–which can be taken by both type 1s and type 2s–is supposed to block your body’s ability to put sugar, removed from the kidneys, back into the bloodstream. Instead, it’s eliminated through urine.
I am juggling both the emotional and physical aspects of diabetes care, and that isn’t always easy. I have googled to see how other people are faring on this drug. But it doesn’t seem like many of us are talking about it online.
My water bottle is taped to my lips now. The dehydration side effects – the light headedness, shortness of breath, and overall woozy feeling – are making my days harder. I was warned to watch out for side effects and they are no joke. I walked down the hallway carrying my laptop today, which I’ve done a hundred times now. I’ve never had to stop and steady myself against a wall, though.
I know when I take this pill each night, I’m not going to feel well the next day, at least not until my body adjusts to it (at some future unknown date). So every evening, I ask myself, “Is this really worth how it’s going to make me feel tomorrow?”
Yet it’s hard to justify not taking it. My blood sugars have been great these past two weeks, but it’s a little unpredictable when I give a correction bolus. You know that queasy yet elated feeling when you know you’ve SWAG (Scientifically Wild Area Guess) bolused, yet your numbers two hours out are perfect? That’s what this feels like.
The first day I took Invokana, I gave myself a normal correction and ended up at 42. Oops. Then I realized this is like double-bolusing. To avoid another low, I have been cutting the dose by half – which, thankfully, works. The time of day and how much of the drug is left in me seems to affect how much correction bolus I need. I haven’t figured out an exact formula for this, so it’s all random. I can feel my shoulders tense and my breathing get quicker when I’m staring at my pump, trying to decide what to make the numbers say before I press the “Go” button.
Am I going to remember to cut the dose in half tomorrow afternoon, when who knows what will be going on in the office? When should I start looking at giving myself 75 percent and then full boluses? 2 p.m.? 5 p.m.?
The lack of clear answers and the cognitive task-switching which adds to my busy day makes me want to stomp my feet and scream. I want my body to have an LED readout with the exact level of Invokana in me.
Then there’s the huge unknown of the long-term studies of this drug. The worries that make my stomach clench. We simply have no idea what the long-term effects are. Yesterday, I started to have back pain – did I stretch too far during yoga or is it a sign of kidney failure? Do I stop taking this pill and call my doctor? I am really unsure.
I have tried so many drugs in the past that had dramatic physical side effects. That made it easy to say, “Stop – enough is enough.” But this, these are nagging, tedious symptoms I have to decode and decide on without any clarity. It’s a mental workout.
Am I really so desperate I will tolerate feeling horrible, toting around a water bottle, and the uncertainty of side effects, all for great blood sugars? For right now, yes.
I make that decision in terms of striking a balance between my mental and physical health. I can’t escape having to keep my blood sugars “in between the lines” (Thanks, Riva.) So I check what I’m feeling and what I’m telling myself often throughout the day. Am I getting frustrated at my body’s lack of steady response? Does the sense of being unpredictable scare me? Most of the time, that’s a “yes.” I feel my shoulders relax after I become aware I’m sitting at my desk, frustrated and scared. No one can see these emotions in me, no one can measure them, but unless I allow room for them now, they will control my day and ruin my evening.
I utilize my “mental tools” to keep emotions and thoughts healthy, and try new drugs in order to keep my body healthy. I cannot not try this drug. My blood sugar swings wildly, and I can see on my CGMS that I’ve gone from a crazy rollercoaster ride to gently sloping hills and valleys. I’m confident I’m making the best decision I know with the information I have, and I give myself the freedom of choice for me to change my mind tomorrow.