The JDRF is the world’s leading nonprofit organization supporting Type 1 Diabetes research. Fun fact: they used to be called the Juvenile Diabetes Research Foundation, but changed to the acronym in acknowledgement of the fact that, huh, it’s not just kids who get it. (Did you know that Mary Tyler Moore was 33 when she got diabetes? Actually, did you even know that Mary Tyler Moore has diabetes? I did, because I read her book…yeah, I know. It was actually kinda depressing).
But anyway, the mission of the JDRF is threefold: first and foremost, they seek a cure for diabetes. Additionally, they seek to develop better treatments for how people with diabetes manage the disease. Finally, they seek to prevent Type 1 Diabetes, to keep future generations from getting it.
A cure sounds great, and if you’ve read the recent Harvard report (and SO many of you reached out to me when it was published – you are all THE BEST and it was overwhelmingly wonderful!!!), that’s looking more and more like something that could happen in our lifetime. However, for the immediate future, I am grateful that JDRF is so focused on treatments. The truth is, a relatively small amount of people have Type 1 Diabetes – probably only a few million in America – a minuscule (5%) percentage of all those living with diabetes. Have you noticed how there seem to be, like, 9,000,000 drugs out there for people with Type 2 diabetes? I feel like every day I turn on the TV and see another one. That’s because, if you’re a drug company, developing a Type 2 diabetes drug is a pretty lucrative proposition – you have almost 30 million potential customers at your disposal, in the US alone. That’s a lot of pressure to get one out there.
OK, Jessie, be fair: Type 2 diabetes also has an entirely different mechanism than Type 1 diabetes. The type of drug options available for people with Type 2 are so much more numerous also because of the way the disease works, and the subsequent options for treating it. However, I do think it’s fair to say that without the funding and industry support of the JDRF, there would be very few powerful advocates for Type 1 diabetes research in this country.
It is thanks in part to the JDRF that so much incredible technology exists to help out diabetics. They fund research, they publish findings, they serve as a bridge between the disparate drug companies working on the different technologies, and they advocate for products when they are being reviewed by the FDA.
I have been blessed to have been able to avail myself of said technology from pretty early on in my diagnosis. So much of this stuff is so new that a lot of people who have lived with diabetes for years had to spend the initial phases of their illness without it — I literally can’t imagine that.
Today, I’ll talk about my CGM.
Critical to diabetes management is blood sugar testing. As I have over-explained, the ideal range for blood sugar is 70-120 mg/dL pre meal, and then up to about 180 mg/dL in the 2 hours after eating. No way to know if you’re within this range without testing, right? Testing your blood sugar helps you determine whether, (and how much), insulin to dose, whether you need to eat, whether you should work out, etc etc etc. I test my blood sugar between 8 and 25 times a day, depending on what’s going on. I explained way back in post #2 how this happens; basically, you prick your finger and suck the blood into a glucometer so it can read the result.
That’s all well and good, but there are severe limitations to “fingerstick” testing, as it is known. Take this diagram that I just stole off the internet, for instance:
The diagram above shows some blood sugar tests : the blue rectangles. The grey bar is that target zone of about 70 – 140. As you can see, it looks pretty good: when this person was testing, almost all their tests were “in range”. So, they were good, right?
NOT SO FAST!
Here’s a very similar looking graph– except now, instead of showing the isolated fingersticks (now red dots), it also shows the entire trend of this person’s blood sugar. Look at all the highs and lows they missed! Gasp!
I don’t know why I’m joking — it’s actually pretty serious. You don’t want highs or lows — ideally, you want to see exactly what your blood sugar is doing ALL the time, rather than JUST those moments when you feel like making yourself bleed. But until CGMS, there was no way to do that.
Well..that’s mostly true. There are also Diabetes Service Dogs — yes, literally you can train dogs to SMELL changes in your blood sugar. Then they tap you or alert you when they smell that you’re going too high or too low. Oh MAN do I want one of these dogs. However, they cost like $20,000 and are not covered by insurance…whereas the CGM tool was covered by my insurance and doesn’t, like, need to be housebroken.
CGM stands for continuous glucose monitoring, and it literally gives you the full line graph. It’s a little device that you carry around that looks a hell of a lot like an outdated mp3 player. Except, unlike a super outdated mp3 player, it provides lifesaving information about what your blood sugar is doing – not just the value, but the trend. The CGM tracks your blood sugar by providing one reading every 5 minutes, and is thus able to interpret and predict what it’s doing at any point – is it stable, is it rising (quickly or slowly) or is it falling (quickly or slowly)?
There is one player in the CGM game, at this point, and it’s Dexcom. There’s a few other companies that make them, but no one comes close to the accuracy of Dexcom. I got my Dexcom in June, and I literally don’t know how I could live without it.
I wish the Dexcom didn’t look like an mp3 player from 1994, but alas, it does. It makes it a bit complicated when you are trying to convince a German airport security person that, no, it really can’t go through the x-ray machine, as it is a lifesaving medical device, not my grandmother’s mp3 player, and they refuse to believe you, cuz, well… it sure looks like my grandmother’s mp3 player.
(Eventually I just began chanting “insulin” — no, the dexcom has nothing to do with administering insulin, but that at least got their attention.)
The Dexcom receiver (the pink one above… and I’ll confess, I find myself wondering these days why I went with pink. Maybe black would have looked a bit more like a lifesaving medical device rather than, you know, the antique mp3 player…) ANYWAY, the Dexcom receiver works by receiving wireless signals from the transmitter, which is a small needle you inject into your stomach. It lives in your “interstitial fluids” and takes your blood sugar reading from there. The stomach transmitter lives in your stomach up to a week, then you must replace and re-inject in a different location.
The Dexcom is the greatest. I love it. Well…90% of me loves it. 10% of me hates it. It has “alarms” – that is, it goes off when your blood sugar goes too high or too low. You can set the ranges; for me, I have it vibrate “high” when my blood sugar is over 200, and vibrate “low” when I’m below 75 (a warning). If you go below 55, it goes off no matter what.
It’s huge. There’s a huge difference between knowing your blood sugar is 85 and holding steady and 85 and dropping quickly. In the first case, you do nothing – in the second case, you have to treat. Or the difference between knowing you’re 200 and dropping and 200 and skyrocketing. In one case, you might do nothing; in the other, you’re gonna want to take insulin.
Plus, the Dexcom is the ultimate comfort for overnight. I can’t tell you how good it feels to know that I can fall asleep and it will wake me up if my blood sugar drops too far. Remember my terror over ‘dead in bed’ syndrome?? Preventing overnight lows is, most likely, the first step in preventing that horrible fate.
I said that 90% of me loved it. It’s true. There is, though, 10% of me that legitimately hates it. Sometimes, having too much information is a burden, not a curse. Like, if you know your blood sugar is going to be a disaster, say…you’re at your sister’s wedding and you just indulged in some dessert and you know it’s gonna be a problem but you figured one indulgence in 8 months is something your body will live with, and then your little pink friend starts alarming the words HIGH in big yellow letters…uhm yeah. You can now shut up, Dexcom.
The other challenge with the Dexcom is that, because it’s taking blood sugar readings from “interstitial fluids” and not your actual blood, it tends to be on a bit of a delay from what your blood sugar is really doing. It in NO WAY replaces fingersticks, as they so so often like to remind you. It can be much, much less accurate. Once the Dexcom started alarming that I was 250 and skyrocketing, and when I did a fingerstick, my blood sugar was sitting at a much more manageable 150. Glad I didn’t take insulin just off of the Dexcom, or I would have been in trouble. Or, since it’s on a delay, it will often alarm that I’m low, and then, even though I treat the low with glucose, it won’t “register” that my blood sugar is rising and it will keep alarming. So my glucometer will tell me I’m back to 90 or 100 but the Dexcom is freaking out, saying I’m 43. Again, annoying.
I think most of all, though, the challenge of the Dexcom is that it’s very hard to look at a trend graph and not have it determine how I feel about myself on a given day. On days when it’s going well, OH MY GOD do I feel good. On disaster days… I feel horrible. Is blood sugar my new “weight”?
Before I got my Dexcom, I remember talking to fellow Type 1 diabetics who had it. Everyone was very positive, but one strange thing I noticed is that people tended to be kinda proprietary about them — they didn’t like showing them to me. Now, I completely get it. When the graph doesn’t look “perfect”, it’s very difficult to feel enthusiastic about showing it off to people. It feels like admission of failure in a way that is super uncomfortable. I don’t need some random to judge me for a high or a low that they know nothing about. I try, very hard, to keep my personal self-worth from getting caught up in these graphs, but occasionally they get the better of me.
And then, there are the moments when your blood sugar drops so low, the Dexcom doesn’t even bother giving you a reading:
So….I knew my sister’s wedding was going to be a disaster of a day, in terms of blood sugar. I prepared myself, mentally. Stress causes blood sugar spikes (and HELLO…Maid of Honor Speech?!), changes to routine also do, as does eating random crap all day because it’s your sister’s wedding. Still, I can’t say I’d quite prepared myself for this much of a disaster:
But then, of course, there are the days when everything is stable, and the Dexcom seems to be singing your praises. Let’s end with one of those, shall we?