“Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)”
If you’ve been reading this blog for a while, then you know how much I LOVE my endo and CDE. I absolutely adore them.
They don’t read my blog, but they know about it. They know how involved I am in the Diabetes Online Community. And they know how much you all have helped me.
My endo and CDE are both quite supportive and understanding. Especially my CDE. She has great empathy for her patients, and that comes across in her interactions. I felt safe enough with her to ask for help.
If my endo and CDE were to read my blog, I hope they would see that I try. I try damn hard. We all do. Some days are easy, some days are impossible. That a person’s A1c is not always the best indicator of their health.
For any medical professional who might read this blog, this is what I want you to know: empathy and empowerment inspire change. That’s what we as patients need.
How many snacks does it take to keep a level blood sugar when tackling a long-neglected pile of sticks and branches in the backyard?
Oh crap! Can’t go to bed yet. I forgot to refill my reservoir.
It’s 11:30pm. Open the fridge, pull out the insulin, set it on the counter. Give it a few minutes to warm up, and come back.
I’ve done this a million times. I could fill a reservoir in my sleep. And maybe that’s what I was doing, because I can’t figure out how this happened.
Next thing I know, the reservoir and attached vial of insulin fly out of my hands. I can see it all happening in slow motion. My hands reaching out in an attempt to catch it.
“Noooooooooo!!!!” I cry, diving for the vial. But it’s too late. The vial of insulin smashes to the tile floor. Did I mention the vial was almost full?
If you look REALLY CLOSELY, you can see the puddle of
insulin and broken glass on the floor.
|The bottom of the vial broke open…|
..and so did the top.
Impressive, ain’t it?
In almost 20 years of living with Type 1 Diabetes, this is only the second time I’ve broken a vial of insulin. And of course it would be super late at night. And my last vial.
Two choices: go to the pharmacy at midnight to get more insulin, or fill the reservoir with the dregs of a couple vials that have been sitting in the fridge for who knows how long. I was exhausted, and chose the dregs.
Big mistake. Woke up to this:
So last week, I went to the pool. An indoor pool, considering the eight inches of snow on the ground outside my window. Come on, spring! Where are you?
But I digress. So I went to the pool. I had just gotten out and reconnected my pump. My Medtronic pump isn’t waterproof, though every time I’m at the pool a waterproof pump sounds absolutely wonderful. But I digress again.
I had reconnected my pump, and clipped it to the shoulder strap of my swimsuit. There I sat, on a bench, my purple insulin pump out for all the world to see. The pool was crowded. Very crowded. Full of kids. And kids being kids, a lot of them stared at my pump when they walked by. This is not a new experience for me. Fairly typical for the pool. I just smiled at them as they walked or swam past.
Though it’s nothing new, it does get old after a while. Sometimes it’s hard to be different. To be the only one at a pool with a medical device attached. To have people stare.
After a while, this one boy walked by. I’d seen him earlier–he was there with a large group of kids. He looked to be about eight or so. He stared directly at my pump as he walked by. A bit later, he walked by again. This time, he looked at my face, and I smiled at him. Then, he proceeded to walk by a third time.
This time though, he stopped.
“Are you diabetic?” he asked.
“Yes,” I replied.
“Me too!” he said, lifting his shirt to reveal a pump pack hiding underneath.
Suddenly, I didn’t feel different anymore. “What color is your pump?” I asked him.
“Gray,” he responded, pulling his pump out of the pack.
“Look at that,” I exclaimed, “our pumps are the same! Except for the color.” We both had the Medtronic Revel, his gray and mine purple.
“I have to go,” he said. “My group is leaving.”
“It was nice to meet you,” I said with a smile.
He smiled back. “It was nice to meet you too.” And off he went.
I don’t know if I’ll ever see that kid again, but I sure won’t forget him. Thanks kiddo, for making me feel less alone.
Few topics are capable of eliciting a more visceral response from people with diabetes and their loved ones than talk of a cure. So many emotions come rushing to the surface so quickly.
I don’t know about you, but for me, having any sort of reasonable, unbiased conversation about any potential cure is next to impossible. Anger, frustration, pain, sadness, cynicism–all these things rush to the surface. I have lived with Type 1 Diabetes for nineteen years. There are people I’ve met who’ve had it for more than twice that long. This is our reality. This is our life.
When we have conversations about a cure, words must be carefully chosen. It is important to remember what an emotional topic this is, that words hold more power in this context than they typically do.
I’ve written about this before, but I don’t expect to see a cure in my lifetime. Do I believe that all types of diabetes will be cured one day? Absolutely! But do I expect to still be around when this happens? No. I operate under the assumption that I will live with Type 1 Diabetes for the rest of my life. It’s part of how I cope.
I do want to emphasize that I STRONGLY believe in supporting diabetes research and working for a cure! I believe that with all my heart. I support organizations who are working towards a cure, but I also believe in supporting research for technology and medication that will make our lives better. Like the Artificial Pancreas Project. Or glucose-responsive insulin. And there are many others.
The point is, we need to have HOPE. Hope that help is coming. Hope that something better lies ahead. For me, that hope lies in things like the APP and glucose-responsive insulin. I hope and pray to see one of those things in my lifetime. For other people, hope lies in a cure. And that’s ok. We need to take our hope where we can get it.
I want to know what research is being done. What different organizations and companies are working on. I’m all in favor of whatever will help improve the lives of people with diabetes. But please, choose your words carefully. Don’t make me any promises. You hold my heart in your hands.
This week is National Eating Disorders Awareness week. This is a topic close to my heart.
If you know me at all, you know that I have food issues. I have for a long time. Binge eating is my demon. The thing I battle. Thankfully, with treatment, I have made great progress. Things are going pretty well overall.
But still. My food issues are there. Lingering. Waiting. Ready to pounce when I’m feeling weak.
I’ve not been diagnosed with an eating disorder. My therapist thinks my binging is caused by anxiety and depression. But I’m sure I meet some of the criteria for an eating disorder. And had I not sought help when I did, I don’t know where I would be.
Kim wrote an incredible post about diabetes and food. I completely agree with everything she said. Diabetes messes up our relationship with food. Totally and completely. Food becomes a loaded topic. It’s no longer just food.
I am so happy that the overwhelming approach nowadays appears to be to let kids with Type 1 eat what they want and bolus for it. Like Kim said, when I was a kid, there was a long list of food I wasn’t allowed to eat. Having forbidden foods like that is not a good thing. And I know it did long term damage to my relationship with food.
Sometimes I feel like my binging completely rules my life. That food holds this tremendous power over me. That I have no control over my own body. But I know this isn’t true. Thankfully, I have an amazing therapist, and incredibly supportive family and friends to lean on. They remind me that I can do this, and that I am never alone.
Please take a minute to read this post from some members of Diabetes Advocates. Having any type of diabetes increases your risk of developing an eating disorder. But there are things we can do. Lee Ann has some fantastic advice about talking about food and eating disorders. For me, talking about my binge eating helps. It frees me of the secrecy and shame.
If you struggle with food issues or think you might have an eating disorder, please TALK to someone. The National Eating Disorders Association can direct you to places to find help. You are not alone. I know the shame. I know the guilt. I know how it feels to be completely powerless.
You may have heard the saying “depression lies.” So do food issues and eating disorders. There is hope. There is help. Please talk to someone.
The theme for #NEDAwareness this year is Everyone Knows Somebody. You know me. Please help spread the word. Spread the hope.
If you follow me on twitter, you may have noticed that my pictures of my CGM graphs look a little different lately.
I’ve been using Medtronic’s Continuous Glucose Monitoring for about a year and a half. And it’s been a godsend. I still have diabetes and days that don’t go so well, but having a CGM has transformed the way I care for myself.
But after all this time on the Medtronic system, I’ve recently switched to Dexcom. But it’s not a switch I’m thrilled about making. And a switch that I hope is only temporary. Let me explain.
The current Medtronic sensor, the Sof-sensor, hurts. Insertion hurts a whole hell of a lot. As my friend Martin says, that needle is an effing harpoon.
And that’s why I switched. Bottom line. I just couldn’t do it anymore. I know this makes me sound like a whiny baby, but it’s the truth. I just can’t handle that giant needle anymore. The Dexcom hurts a lot less to insert. It’s not painless by any means, but certainly way better.
I did a trial for about 10 days of the Dexcom system before I decided to get it. And for several of those days, I also wore the Medtronic sensor, which gave me some time to compare the two. There are definitely pros and cons to each system. So here we go.
- Insulin pump/CGM integrated (one device)
- Access to calibration history. You can go in and see all calibrations going back several days. Includes both the time of calibration and the bg number entered.
- Ability to scroll back and see previous CGM readings up to 24 hours ago.
- Has predictive alerts. Meaning that I can set the pump to alert me when it predicts I’ll go low or high within a certain amount of time. For example, I can set it to alert me 15 minutes before the CGM thinks I’ll be low.
- Can set varying high and low thresholds. My high threshold was set at 180 during the day, and 200 overnight.
- Access to sensor alert history allows you to see all previous alarms and alerts.
- The alarm snooze settings are easy to customize. My low alarm snooze was 20 minutes, and my high alarm was set at the max, three hours.
- You can cycle thru all graphs with up arrow over and over. It goes from 3 to 6 to 12 to 24 and back to 3 again, all using the up arrow. You don’t have to scroll back down again.
- Sensor/transmitter combo is lower profile. I don’t catch it on stuff like I do the Dexcom sensor/transmitter.
- CGM settings are overall more customizable.
- HUGE insertion needle! Ouch!
- Three day sensor (though I always wore it six. Shhh!).
- Complicated insertion. Can be challenging to hit the correct angle, tends to bleed a lot, and did I mention it HURTS??!!?
- Only supposed to calibrate when blood sugar is stable, otherwise it throws things off.
- Have to wait for sensor to “wet” after insertion before connecting transmitter. This can take anywhere from 15 minutes to a couple hours.
- Insertion not very painful and significantly easier.
- No wetting time for sensor. You can immediately hook up the transmitter.
- Seven day sensor. I’ve made it to almost two weeks (again, not medial advice. Sensor is only FDA approved for seven days).
- Dexcom automatically pulls the number off the graph when you calibrate, so you start from there. Medtronic starts at 90 every time.
- Sensor and transmitter adhesive is much more secure without additional tape. The Medtronic sensor flops around unless you tape it down.
- Easy to see CGM graph when you have your pump in your bra. I don’t have to reach down my dress as often.
- Keeps up better when blood sugar is either skyrocketing or plummeting very quickly.
- Having to carry around the receiver is ANNOYING! I’m gonna lose that thing, I just know it.
- Hovering around the high or low threshold? The Dexcom is going to alarm EVERY SINGLE TIME you cross the line, instead of alarming once and then not again until the snooze is over. Medtronic won’t repeat the alarm until the snooze period ends. So no matter how many times I go over/under 180, that high alarm will only go off once every three hours. Much less annoying.
- You have no access to data on the device itself. Now, I’ve not downloaded data and looked at anything on the computer, but I miss having all that info at my fingertips. Previous CGM readings, calibration and alert history, when the next calibration is due, and the age of the sensor. The Dexcom receiver doesn’t give me any of this information.
- No predictive alerts.
- When you restart the sensor, you have to wait the initial two hours again for any data. With Medtronic CGM, there’s data immediately after you restart.
Clearly, there are advantages and disadvantages to both systems. One thing that isn’t really different is the overall accuracy. I don’t find the Dexcom to be more accurate than the Medtronic. Usually it does keep up with wild swings a bit better, but not always.
So for now, I’m using the Dexcom. And trying not to leave the receiver anywhere. But like I said, I’m hoping this is just a temporary switch. Because this isn’t what I really want.
What do I want? Short of an artificial pancreas, I want the Medtronic Enlite sensor. I had the good fortune to see one in action at the Medtronic Diabetes Advocates Forum back in March. Words cannot describe how badly I want this. Insertion looks so much less painful. And the sensor is 90 degrees–no more funny angles. And it’s a six day sensor. And more accurate. I could go on and on…
The Enlite is what I’m waiting for. And unless it doesn’t deliver as promised, I plan on switching back to Medtronic as soon as it’s FDA approved and available in the US. Hopefully my MiniLink transmitter will last a while longer so I won’t have to pay for a new one.
Overall, in my opinion, the Medtronic system is superior to the Dexcom system. Now I know that Dexcom has their next generation sensor and receiver in the FDA channels right now too. And I don’t know much about either.
I am a firm believer that people use whatever diabetes technology works best for them. Just because I like the Medtronic system better doesn’t mean I think that everyone needs to use it. Use whatever works best for you. Your diabetes (and diabetes technology) may vary.
But what I want is to go back to my integrated Medtronic system, with the Enlite sensor. So dear FDA, please hurry. Thanks.
Please remember that I am not a doctor, and everything here are my own thoughts and opinions, and are not intended as medical advice. Thanks!
There are a lot of reasons I LOVE the Diabetes Online Community. This is one of them.
A little over 24 hours ago, a friend posted that her T1D daughter needed to get glasses. And that she was worried about not being pretty with her glasses and insulin pump.
Sara, Kim, and I decided we needed to tell her the truth. That she’s BEAUTIFUL!!!!!
I’ve had diabetes for almost 19 years, and got glasses about six months after diagnosis. I got my first pump in 1998. And I haven’t gone a day without my accessories since.
There are lots of people who rock both dysfunctional pancreai and glasses. So we asked them for help! In less than 24 hours, we had enough pictures and videos of people for Sara to make a video out of them!
The fact that so many people jumped right in, to help someone they don’t even know, makes my heart sing. I love the DOC. Thanks team.
We’re all beautiful.
“What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”
I don’t even know how to pick just one thing. There are so many, many things I wish other people could understand. I love Jacquie’s post from yesterday. Sometimes it would be nice to be able to “give” someone else diabetes for a couple days, just so they could better understand what it’s like. Only temporarily, I promise. I wouldn’t wish this on anyone.
If I have to narrow it down to one thing, it would be this: even when you don’t think I’m thinking about diabetes, I am.
I woke up this morning to this lovely graph:
If you have diabetes, then you know how waking up with a blood sugar of 314 feels. You know the tooth sweaters, the parched feeling in the back of your throat, and how gross it feels getting up all sweaty. You also know the frustration I feel. About how waking up with a high can completely throw off your whole day. That I won’t be eating breakfast for a while.
I’m headed to work shortly. Will I tell my coworkers about my morning? No. Maybe they’ll catch me checking my CGM a lot (because I will be) and ask if everything’s ok. If they do, my answer will likely be, “Yep, I’m fine, thanks.”
I will be thinking about diabetes off and on all day. Every day. Every time I check my CGM, I’m clearly thinking about diabetes. But just because my pump is hidden away in my pocket, that doesn’t mean I’m not thinking about it. Whether at work, out to dinner with friends, driving in the car, or watching TV at home, diabetes is always there.
I do think about other things, of course. Every moment of every day is not consumed by diabetes. But more moments than I would like are consumed by it. I try very hard to make diabetes look like it’s no big deal.
But it is a big deal. And sometimes I wish other people could understand how exhausting it is. Because even when it doesn’t look like I’m thinking about diabetes, I am.
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