I recently had the opportunity to purchase a continual glucose monitor, and in just 5 days, it has completely changed my life. Since I was diagnosed with Type 1, I have wanted one, but back "in those days", they weren't considered reliable enough to be a regular substitute for blood glucose testing (just an adjunct), and they weren't typically covered by insurance. The definitely weren't covered by Medicaid. You can imagine how excited I was to come home last Tuesday and discover the Dexcom box on the doorstep. I excitedly ripped it open, reflecting on how much this meant to me, and how long I had had to wait for one - 8 years. 8 years almost to the day, as I realized with a laugh that my diabetes "birthday" - April 3 - had come with a present this year, just one day early.
Here's a video of me describing my experience with my CGM after Day 1 in case you feel like watching me talk about how I still hate needles for 3 minutes
I peered at the auto injector after turning on my transmitter, suddenly terrified. I grew up with an intense fear of needles, and saying I've overcome it in my 8 years with Diabetes would honestly be a stretch. More like, I've adjusted around it. I don't cry when someone has to take blood or give me an injection now. I'm okay with blood glucose testing, but I have to do it on myself. I need to have control. I wish I were better with managing my fear, but this is the best sort of agreement I could make with myself to manage staying alive. Not too bad. But I couldn't even see how big the needle was hiding in the injector. How was injecting it going to feel? The fact that I couldn't anticipate these things made me highly anxious. People rarely ask Diabetics how they feel about all the needles. Actually, they never do. By people, I mean health care practitioners. You're just expected to do the damn thing. But heck, those things hurt sometimes. Pumps? CGM's? Syringes? Needles? Lancets. They don't feel good. Sometimes, I feel like I'm just a wuss because I still think these things hurt quite badly sometimes. Not always, but sometimes. I can't really think about it, or dwell on it, because that's really not conducive to getting on with my life and, again, doing the damn thing. But in the early days, I used to meticulously count how many times I'd have to endure pain to get through the day. Twice at mealtimes, once before bed. Two in the morning. 9. I endured pain 9 times. This isn't to garner pity for myself, it's just to say that I've spent a long time getting to the point where I don't think about it much these days. I just try to get on with my life. It works well enough.
I must have pulled up at least 3 youtube videos on people injecting the Dexcom G6 sensor for the first time. No one seemed to flinch, but heck, the first girl who did it had cystic fibrosis. Were these people just all used to it and I wasn't? I put the injector up to my abdomen... and then realized it was stuck. Crap! The sensor is surrounded by a tape that adheres to your skin. If I ripped it off now, I'd ruin the sensor, and it wouldn't stick to me. I was upset. I couldn't bring myself to press the button. Kris offered to press the button. I thought about it and then chickened out and skittered away. I called my mom, trying to get the courage to do it. Damn it! This was like injecting myself for the first time. I remember sitting in the booth at the sushi place. "I'd just do it," my mom told me. "Because if I don't, I'd die. You just have to do it." Not particularly comforting, but actually, my mom has a way of not sugar coating things that helps sometimes. I cried, but I did it, feeling very sorry for myself at the time.
30 minutes later, I finally pressed the damn button, and actually, I didn't feel a thing. I shook my head, annoyed at this fear of needles, still. Hopefully, next time it wouldn't take as long. I get to leave them on for 10 days at a time.
A CGM gives 24 hour feedback on your blood glucose, gives trends (is my sugar going up or down, and how fast?), alerts me when I'm high or low, and I can transmit the data to my phone and apple watch. It's utterly incredible, and I've never had anything like it. I immediately felt as though I'd been driving a car blind all of these years - unable to witness trends in between mealtimes, or stay on top of my blood glucose, or experience what it's like to treat a low before I'm actually low. Valuable time at work that I'd have to take out just to get a single number on a screen - unknowing if I would be high or low 30 minutes later - has now been returned to me. My quality of life is 10 times better with a CGM, and I noticed this after a single day.
And to be frank with you, this is where we get to the real meat of this post, because honestly, that makes me incredibly angry. Please be aware: this is not intended to sound like a complaint. But rather, it's a commentary on the nature of our current healthcare system. I waited 8 years for this technology that has utterly changed my life, because I couldn't afford it. 3 different kinds of insurance, and none of them covered this without a huge, thousand dollar expense on my part, plus hundreds monthly for supplies. Impossible to afford without huge sacrifices. 8 years of my life where I knew injecting 15 minutes prior to mealtime was important, but didn't personally witness the difference it makes in my blood sugar until just 5 days ago, witnessing the huge spikes and later crashes that are a consequence of waiting to inject even 5 minutes before a meal. 8 years of having to so often guess. Waiting until I'm symptomatic with a ;ow of 32 to be able to treat a hypoglycemic episode. Even now, I spent $700 on this CGM to meet my deductible, and it's still $60 a month just for my supplies for this meter. Not counting my $25 copaqy for each insulin I need. The fact of the matter is, this technology is so expensive, that it's unattainable for so many who were in my shoes. A CGM has been scientifically proven to reduce A1C levels. That's 8 years of better, tighter blood glucose control I could have had had this technology been affordable. That's 8 valuable years of me being complication free, a hugely important window of opportunity in which to care for my body, that feel almost wasted. So ladies and gentlemen, this is why I get angry when people brush off LEGITIMATE concerns on behalf of diabetics by stating that they can "just" go get insulin at walmart. When will people start realizing that this is not, cannot, be the answer? My A1C has lowered by 3 POINTS since getting new insurance this year. That is, on average, a change of more than 100 mg/dL in my average blood glucose over the span of 3 months. The difference between a future with complications and a future without. Because I can afford a long acting insulin that works great for me and a piece of technology that is a valuable tool to manage my glucose 24-7.
Diabetes is not one size fits all. We cannot brush off the concerns of others like me by stating that 50 year old insulin is the answer. This is like saying that people with depression should take MAO inhibitors - a more dangerous, older version of antidepressants with a number of side effects that have rendered them less popular over the years - versus SSRI's if they can't afford them. I cannot stress enough that affordable access to the kinds of tools and drugs I believe people need is key. I suppose I feel so compelled to continue to state this because I cannot forget where I came from. I cannot forget what it was like to live in constant worry over my disease because I could not afford to properly manage it. And I cannot stop thinking of other individuals who have gone through and are going through this, too. Let us keep fighting until this changes.
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