Life on an insulin pump is different from what I was expecting.
In fact, I am not sure I knew what I was expecting. I knew things would be different but I wasn’t really sure what that different was going to be…
It was a change I was not necessarily prepared for, though in my heart of hearts I think I knew it was coming; I started wearing the Freestyle Libre in November of 2017. Somehow that was supposed to prep me for the journey to Pumpdom. My biggest aversion to wearing an insulin pump was having an attachment.
Honestly, I think that was based on a fear of reality. Like the pump would somehow make my diabetes more real. And make me more accountable.
That was my first real stab at doing Diabetes good (outside of my pregnancy with Bean – funny, I was Mom-ing HARD before he even arrived on this side, though that doesn’t surprise me; sometimes looking after others is much easier than caring for ourselves).
Because there was a good long while when I didn’t do Diabetes good. At. All.
For a good long time I’m pretty sure I lived like my T1D didn’t exist. Not just like I didn’t have it, like it wasn’t there at all.
Type 1 Diabetes has limitations (burdens) people do not even realize. Most just assume I “can’t eat that” or did something in error to bring the ‘Betes upon myself. Years of little to no financial help meant I rationed my supplies.
I didn’t check my blood glucose as often as I should have because I couldn’t afford to use more than four test strips a day. And that is simply NOT enough to achieve good control. It really isn’t even enough data to gleam any kind of information.
And, because I wasn’t checking often, when I was on MDI (multiple daily injections) it was easy to set it and forget it.
I tested, injected and ate. Until the next time…
Of course, needle phobia and anxiety helped keep the multiple MDIs at bay too. But I need to take responsibility for the fact that there was a certain level of disinterest on my part too.
Shoo Diabetes, shoo.
While on MDI my correction doses were limited. In fact, I would ride out the highs until my next meal to circumvent those extra injections. I also foolishly thought I was saving my insulin, conserving it (truth: I likely used more because I didn’t curb the climb).
Fast forward a few years, and a kiddo later…
I have to pause here, because it warrants mention:
A lot changed when my son was born.
Not just diabetes-wise. My mental health issues gave me another really good go immediately after he was born. I struggled. Fuck, did I struggle. And I had no one I could turn to, so I kept quiet. Real quiet. I put on the fucking fakest face I could muster and forged ahead through the days. Inside I was an absolute disaster. And those tiny little fingers and toes were the only thing keeping me from doing something more permanently conclusive about it…
I questioned a lot of things, including my own abilities to properly care for that tiny little human. A tiny little human that did not ask to be here, and certainly would not have asked for this as his mother.
But his being here is the greatest gift I have ever received and this world is lucky to have such a spirit walking upon its grounds. He carries a magic with him I cannot explain properly but I can say he leaves a mark on everyone he interacts with, and I am so humbled to be a part of his journey.
And that made me think, I don’t want to fucking miss this. So I (slowly) started changing my diabetes-mindset. I took more of an initiative in his first few months of life than I ever had before. And as he grew older, that drive to do ‘Betes better grew too.
In that journey to better Diabetes management I switched from syringes back to pens, started seeing doctors, nurses and all the people again. I got a referral to a proper Diabetes Clinic and a started seeing someone to help me with my mental health struggles.
In that time, my husband says there was a shift. He said something to the effect of, “you now live like you have T1D and it has made your life better.” And he is right.
Argue it all you want, and people do, whether you acknowledge it as a Person With Diabetes or as a Diabetic – it’s there, Type 1 Diabetes.
There are tools (things like insulin pumps, CGMs and now Looping!) to make living with it easier, more manageable. But in my 20 years of T1D, the worse thing you can do is ignore it and live like you do not have it. And to be honest, why would you want to ignore such a big part of you? Because it is. A part of you.
Even if you think it ought not to be.
Going to Camp helped shed a lot of light on that…there are some super stellar humans out there with T1D and it’s an honour to be in the mix with them. To see what they are doing to make this world a cooler place to roll around in is quite something.
That community of people inspired me to seek out a better me. To dig deeper and see what it is I am capable of in regards to my Diabetes management (and possibly other areas, but I’m a work-in-progress, as we all are, so a few things are riding in the back seat for now while Diabetes rides shot-gun).
And if that meant being two-parts robot then two-parts robot it was going to be.
The first two weeks on the pump were like a really long first-date. OTIS and I had to get to know each other, feel each other out and see how we were going to navigate this dance together. With our steps memorized, we graduated to more complex moves. Not with complete grace but enough that it felt like we had mastered some new skills.
And so, it was time to head back to the clinic for my follow-up meeting. Time to learn yet another new skill: extended bolus. But before that was a visit with my Endo.
I am not one who worries about these appointments. The doctors and nurses are a part of my team. Not to be feared. I refuse to give away that kind of power again. I had a doctor once that didn’t support my health goals and it nearly cost me my life. Now, I am more selective. And if they are not supportive of me, they don’t belong on my team.
It was a good appointment (except for the part where I learned I had gained weight -gah!), they were happy with all the results of my recent blood work and glad for the positive transition from MDI to Pumpdom. A few tweaks were suggested to eliminate some low blood sugar patterns and then on to my meeting with the Pump Educator.
I did take a detour on my way. Well, two detours. I desperately needed to pee. So I stopped by the restroom and knocked. No answer. So I opened the unlocked door. And was surprised to find a guy sitting on the toilet! What the fuck? Why not say something? He apologized when I stepped through the doorway as did I, on my way out – seriously, though…WHAT. THE. FUCK. As I collected myself another gal was headed for the door, arm reached out, and as her hand reached the handle I shouted: there’s some guy in there! I explained the events that had just transpired and she thanked me.
I found somewhere else to tinkle, then met up with a student who wanted me to participate in a trial for an eye examination. They have a machine that can be operated in the Diabetes Clinic (the goal is to make it easier for people to get their vision checked by eliminating the need to visit more than one doctor/office/appointment). That done, it was back up to the clinic for my follow-up…
Another good meeting. OTIS and I were a great match. And seemed to be making things work pretty darn well.
Phew. That was something that did have me holding my breath.
It has been four months now. Four months since I first started wearing my pancreas on the outside. Four months absent of needle phobia and the torture of injecting myself to stay alive.
What a fucking relief.
I don’t know what I was expecting to get from an insulin pump. I suppose I did expect a a certain injection of freedom. And, perhaps, a bit more accountability.
I wasn’t expecting to get an injection of life.
But that’s exactly what I got.