No two Diabetics or People with Diabetes are the same. They just aren’t, and everyone living with the disease does so differently.
And yet, I have found there is a great deal of pressure in the community. I have found there is an unspoken notion that some T1Ds are better “at it” than others.
This notion, though never spoken out loud, runs rampant through the community in the form of (what appears to be) high-school-esque cliques. There seems to be a collection of cool kids that have a grasp on/of the modern day media, and so, that allows them a certain amount of control over what is portrayed.
Wonderful as they all are in their advocacy, this hearkens back to my previous statements about REALABETES. And I worry, if one particular group of people within the community gets all the attention, where is the representation for the rest of us?
If you are in any way familiar with CGMs or FGMs then you are also aware of the line. The line is representative of our “glucose” (more accurately, interstitial fluid) and shows what our levels are up to throughout a given period of time, depending on what device you have.
In November of 2017, I began wearing a FreeStyle Libre. It is a flash glucose monitor. I first learned about it from my friend Sara. She had been wearing one and it was helping her better navigate patterns in her blood glucose results. When she and her partner Leanne visited us that summer, I was able to see it in action. And when it became available in Canada, I immediately jumped on the the self-funding train to get one.
The Libre was great. It made a HUGE difference in my life and my Diabetes management. I was now aware of my DATA. I could now track patterns in my blood glucose and make adjustments to my regime.
And while that doesn’t sound like much, it was such a win for me. Even though I had been T1D for 18 years, there was so many things I was unaware of due to a lack of information. The nerd in me marked out and started keeping more serious records/notes of all the information.
I could now see how things like illness, stress, exercise and my menstrual cycle caused fluctuations in my blood sugar levels. And that, in turn, took some of the pressure off of me.
I wasn’t to fucking blame for my “bad” blood sugars, look! It was this, that AND the other thing!!
The Libre and I had a wonderful relationship. Until we didn’t. And when it ended, we basically crashed and burned.
The price point wasn’t terrible, so self-funding wasn’t the primary issue. No, what happened was worse. And more painful. And inconvenient.
After 18-months of sticking together, I started having severe skin reactions. I tried everything available to keep Libre and I together. I sampled and purchased products to create barriers between us with the hopes of keeping us on the same team. I was gifted products by my diabuddies. But nothing worked. And the reactions worsened.
After two failed sensors while in Florida (I lost both the night before I was heading off to Disney World with my son, we were driving up to Orlando from Fort Myers), I was forced to finger poke for the remainder of my trip. And once I returned home.
I could no longer handle the skin issues.
It has been over six months since Libre and I ended things, but I still bear the marks left by the last few successful sensors.
I had to make a decision.
Several years ago, I was fortunate enough to have the opportunity to wear a Dexcom continuous glucose monitor. My then clinic offered me the chance to wear one for a week. After a few training appointments, of course.
The nurse inserted the device (on my lower back/muffin top) for me and handed me a receiver. I would wear it for seven days, then return to have it removed and see the results.
Well, HO-LY FUCK. What a game changer! I was suddenly alerted to the direction my blood sugars were heading. I no longer needed to wait until I felt low or high, my trusty little bit of machinery went *beep beep* to alert me.
And, as someone who doesn’t really like to be touched or have things on them, I wasn’t even bothered by its presence.
The week flew by, and I landed back at the clinic. The nurse gingerly removed the device and we sat together reviewing what felt like hundreds of pages of data (I still have them, like a memento – in truth, it was more like 30 pages). Then she asked if I felt it made a difference. I sang a song of gratitude. It had seriously changed my life. I had the best blood glucose numbers of my T1D life that week.
Then she told me how much it would cost to purchase one. And I was crushed. The dream died right there in that office.
And then it was reborn earlier this year.
Dexcom was offering their G5 system at a reduced rate. Something I learned (conveniently) upon my return home from Florida. So we did the whole pro/con thing pitting Libre against Dexcom. Our bank accounts said so. Being a self-funding T1D often means financial sacrifice, and we had to be sure that the Dex was going to be worth the stretch.
We ordered the Dexcom G5 that day.
The Straight Lining
I noticed it when I was on the Libre. But it became WAY more apparent when I started on the Dexcom. All these people sharing their lines, and tips and tricks to keep it straight.
And you start to compare. EVERYTHING. First your line versus theirs. Then you versus them. And then it snowballs…
Their lines are so fucking straight and perfect. Just like them.
It really , REALLY bothered me. I wasn’t seeing a perfectly straight line unless I was asleep. Was I supposed to become Sleeping Beauty in order to achieve good glucose levels? Hell no. There is life to be lived.
So I booked an appointment to see my pump educator who is also a Diabetes Nurse. Lisa told me it is unnatural to not see small spikes after eating. Type 1 Diabetes or not. She explained that a slight rise is totally normal. Seeing Mount Everest on your screen after a meal may not be so great (and would suggest you needed a bigger bolus) but it is going to happen. And it is not the end of the world.
I walked out of there with a better frame of mind. And a new attitude. Do I like a straight line? Sure. It means that I am keeping my blood sugars in check with the right amount of insulin and activity. Do I get a BIG spike now and then? Sure as hell do. Only I am a lot less critical of myself now.
And I try really hard to not let it ruin whatever good thing that is happening or exacerbate any not-so-good thing. And sometimes I’m successful, and sometimes I am not. For me consistency isn’t always key. But kindness is.
You cannot avoid the Straightliners but do not allow unnecessary pressures to take hold where so many pressures already exist.
When it comes to Diabetes there is so much misinformation and criticism from outside the community that we hold ourselves accountable to unrealistic expectations.
Unrealistic expectations that can derail us.
Remember, the road to success – no matter how straight – isn’t without speed-bumps.