The thing I hate more than anything is loosing sleep. I'm a sleeper. I always have been. I took naps way longer than most kids and I had to be dragged out of bed most mornings.
I like to get my 8 hours plus. I can also sleep almost anywhere.
Put me in a car? I'm asleep in 10 minutes or so. A plane? I'm usually asleep before they get to drink orders.
This is not unusual for me. The only time I ever worried about sleep was when I was not making it through the day at work, without going to my car to take a nap. While that's another story, it lead to my Celiac diagnosis, and I'm back to just regularly sleeping a lot.
Diabetes is a sleep stealer. A full on stealer of sleep. With current diabetes technology, the wonderful world of Constant Glucose Monitoring, we are give the security of closer diabetes monitoring. We are given the benefits of knowing what out blood sugar is all of the time. It is a beautiful and wonderful technology, but it also has it's downsides.
There are alarms. All the time. You're too high, you're too low. You're rising quickly or falling quickly. Your sensor has lost communication with your device. During the day, these are great. You hear it, you give a quick adjustment and hopefully fall back into your range again. During the night, these alarms can be lifesaving. An alarm that wakes me from a low, could potentially save me from hospitalization or even death.
But these alarms, when they wake me at night, also keep me awake. Sometimes they go off multiple times during the night, making sleep broken and interrupted. Other times, it wakes me and I can't go back to sleep. This is what has been happening more often lately.
I miss sleep. I miss uninterrupted sleep. I miss it so much. It makes my days hard sometimes. It makes my nights restless. Diabetes is a sleep stealer.
My options are limited. I could turn off my sensor at night, but lose the safety of knowing if I drop too low or go too high. It's something that I've considered. But I'm not sure I'm ready to do this for now.
Thankfully, technology is improving. There are options out there to help regulate your blood sugar levels, without as much human decision making. But until I get that technology, uninterrupted sleep is a nice idea, but not always possible.
The other day a fellow D-OC member posted something on facebook that another person was looking for ways to keep her daughter's CGMS taped down as it kept getting ripped out. I have a very complex system. Really. ;)
But I wanted to share it and since I changed sensors this morning, I thought I'd share through pictures how I keep my own sensor stuck.
As a note, I put my sensor in my leg, so all of these pictures are of my poor, white, pale legs. Sorry ahead of time.
I use cloth tape and two pieces of IV-3000 tape to keep my sensor in place.
I insert my sensor first.
Then I use a piece of cloth tape on the sticky part of my sensor.
Then I attach my transmitter.
Then I put another piece of tape over the plastic end of the sensor.
Then I put a piece of IV-3000 tape down.
I cup my hand over the tape after I pull the top off as the heat from your hand causes the tape to suction to your body. I can't remember who told me that, but it was someone on TuDiabetes.com.
Then I take a second piece of IV-3000 tape and put it the opposite direction (so that the two pieces of IV-3000 are kind of like a cross).
I also cup my hand over that piece to make it stick to me better.
And here's the final look!
It works. I've rarely had trouble with it coming out, though I sometimes have to replace the IV-3000 tape part way thru the life of my sensor.
I hope this helps some of you if you're new to CGMS. But remember: it's different for everyone. What works for me may not work for you.
As you may know, flying with diabetes can be a flat out pain in the rear. Not only do you have to deal with the "normal" part of flying (3 oz containers, no shoes, carry-on size luggage, etc), when you throw diabetes into the mix you run into rules and regulations and technology issues many times.
I treat my lows with juice boxes most of the time. Since even a small juice box is over the 3 ounce size limit for flying, it can be an issue at security. Most of the time I only have to mention that I am a Type 1 diabetic, but I have had them argue with me before. So I've started taking the print off from the TSA website that states that I can take juice, just in case.
Also, Nashville airport (which I nearly always fly out of) has nothing but full-body scanners anymore. For most people, this isn't an issue. For me, it requires extra steps. According to my insulin pump and CGMS manufacturer, full-body scanners are a no-no. This means requesting a full pat down of myself and a swabbing of my hands and insulin pump for explosives. I travel enough that I'm used to it by now, but I also have had times when I've had to argue with TSA agents in order to get the pat down. Due to that, I now have a print-off from the website of my insulin pump company that states that I cannot go through the full-body scanners. You know, just in case.
A couple of weeks ago, I took a trip out of town and packed up my diabetes supplies, my print outs, and explained to my travel companion that two hours early to the airport was pretty important to me, due to the issues that I often face when dealing with airport security and TSA.
We were running late that day (completely my fault, not hers) and pushing time close for our flight. I tried to place myself in the shortest possible line, knowing that I was going to have to wait on a female TSA agent to do the pat down. I was blessed. I asked to opt out due to medical equipment and the guy never even batted an eye. He directed me to the metal detector and almost immediately there was a female TSA agent waiting to get my items (they won't let you touch them until after they're done with the pat down) and direct me to the glass box.
I started to explain about my medical equipment to the agent and she basically reached down and showed me her insulin pump....exactly like mine. Turns out she was wearing the same pump and CGMS that I was. We chatted while she did the pat down and talked about things like infusion sites and CGMS sites and meeting people with diabetes. It was quick, nice, and I LOVED not having to explain myself to the TSA agent.
I handed her a card with my blog address on it, so she may in fact be reading this post. If so, THANK YOU! You were wonderful and helped make that particular experience with TSA and airport security much friendlier.
That was the friendly side of flying. I can only hope I'm lucky enough to get her again when I fly (which I'll be doing a lot of in the next couple of months). Either way, it was a fun experience.
Day 4 of Diabetes Blog Week Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary. Tell us what your Fantasy Diabetes Device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?
There are so many fantasy devices that I would love to have. I could go on and on about what would be perfect, but I'm not sure where to begin and where to start. Back in December of 2010 I wrote a post asking Santa for a special designed insulin pump & CGMS. I'm going to repost that here because I STILL want this. I'm still waiting!
Dear Santa,
I’ve noticed that other people asked you for a cure for diabetes this year for Christmas. As much as I would like a cure for diabetes (this year or next), I’ll leave the curing up to God. Instead, I’m asking you for next year’s Christmas present right now.
It’s kind of technical and doesn’t really exist yet, so I figured I’d better give you and your elves plenty of time to get it together and perfected (and approved by the FDA, of course).
Santa, I’d like the perfect insulin pump/CGMS system. Yup, perfect. At least perfect for me. I have a great system, but there are other systems that have things that I like. So instead of switching systems, I just want you to invent your own.
Here are some of the things that I’d like the new pump/CGMS to include: 1.) Interchangeable CGMS. Santa, I’d like to have the option of which CGMS to use. I know that some CGMS works better for different people. So, I’d like the option to try them all and chose what was best for me…without having to change my pump
2.) I’d like the CGMS to read to my pump (like my current MiniMed system) complete with alarms and warnings, but I’d also like it to read to a second PDM that is also my blood sugar meter. (kind of a mix between the Animas Ping and the PDM for the OmniPod).
3.) I’d like to be able to operate my insulin pump from the aforementioned PDM/meter in the even that I want to wear a dress and don’t have easy access to my insulin pump screen and buttons.
4.) I’d also like the sensor for the CGMS to be FDA approved for 7 days, instead of my current 3 day approval for MiniMed’s CGMS.
5.) I’d like the CGMS to be accurate more often than it is. Instead of a 70% – 75% accuracy, I’d like to see it up around 90%.
6.) I’d like the meter to be as accurate as blood testing in a lab. The “small” differences in readings can mean a big deal in accurate treatment of a low or a high. It would help to have more accurate readings so that my care could be better.
7.) I’d like the alarms on the pump and the PDM/meter to have adjustable volume levels. Sometimes my current system just isn’t loud enough when it’s under 3 blankets and I’m asleep. Having a separate PDM on the night stand might help, but also, having louder alarms would be great because it would wake me up much easier than my currently alarms on my CGMS/pump. And Santa, I’m going to leave my comment section open so that my other friends in the D-OC can add in their own updates to make the perfect pump/CGMS system. We deserve perfect if for no other reason than we have to work so hard because our bodies aren’t perfect. Thanks Santa! Love, Cara and the rest of the D-OC
I'm still waiting and still wanting. If I can get this, it'd be almost perfect. Almost.
Day three of Diabetes Blog Week! Today's topic plays off of yesterday's topic.
Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!
Oh the area I need to work on. There are several, I won't lie. But what I'm currently working on is testing and being more careful about my "guessing" carb amounts and depending on my CGMS instead of actually checking my blood sugars to confirm the results.
I've written about my decision to take a break from my CGMS, in order to force myself to test my blood sugar more often. I'm still on my break. And it's still not easy. But I'm doing it.
The decision was not an easy one to come to, especially since I live alone. I'm already improving. I am testing way more often, because I have to. And I'm not snacking nearly as much. When I do snack, I'm testing and bolusing for everything.
The most annoying thing? Waking up to test in the middle of the night. Still. I HATE it. I like my sleep. I don't like having to set an alarm to wake me up at 2:30.
The good news? I'm planning on starting back on my CGMS later this week. It's for a couple of reasons. One is because I think I'm actually getting back to where I need to be. Another reason is because I'm getting ready to take a trip and I know how my blood sugar gets when I'm traveling. Having CGMS on is an extra safety net, when travel can cause some crazy blood sugar swings.
The true test (pun intended), will be when I get back from my trip. If I can continue to test my blood sugar like I should, and not rely solely on my CGMS. But if I start to slack again, I know that I can trust that my D-OC friends will light a fire under me. And I know that I can always force myself to test, but taking another mini-vacation from CGMS.
As always, see more Diabetes Blog Week posts on this topic by clicking HERE.
So the past 6 to 8 months have been somewhat of a struggle for me. I've been laying down on the job, so to speak. Diabetes burnout takes many forms, but for me it's been nagging and ongoing in a way that I'm done dealing with.
As most of you know, my blogging has taken a back seat to other things in my life. My time on twitter (at least my "diabetes" account) has been less and less. This is an outward sign of what's been going on my in my head for a while.
I don't really feel like dealing with diabetes. I do it. I wear my cgms and my insulin pump. I count carbs (most of the time). I test. I keep juice w/ me in case of a low. I don't mess around. HOWEVER, I've been paying less and less attention to the little things. It's like I went from micro managing to just....managing.
Sure, you can survive on managing. You can stay out of the hospital. Stay relatively healthy. But is it good enough? Not for me. And it's time to stop.
My kicker happened this week. I had an appointment at my diabetes clinic with my nurse practitioner. They did my a1c again. And for the second time in 12 months, my a1c was over 7. I don't like to compare numbers. I don't like to make people feel bad (or feel bad myself). But for me, 7 is my stop point. Since I started pumping insulin 6 years ago I've had only 3 a1c results that were 7 or above. Like I said, this isn't to make anyone feel bad, but this is MY standard (remember that your diabetes may vary).
After having a very successful meeting with my nurse practitioner, we made a plan. My biggest problem of late has been depending too much (sometimes always) on my cgms, instead of confirming with blood sugar checks. Another large problem is snacking or eating and bolusing (or SWAGing) on what was on my cgms, instead of testing.
Solution: a temporary hiatus from cgms. Mostly to force myself to test my blood sugar more. Yesterday was my first day without cgms. I usually have a day here and there that I go without. Today though was my bigger test (no pun intended). Day two without cgms.
Since I'm more out of practice with regular testing of my blood sugar (not just before meals), I've set several alarms on my insulin pump to remind me to test. It's helped me. Last night, I set my phone to alarm me around 2:30 am so I could do a middle of the night test. Tonight, I'll do it again.
I live alone and I FULLY believe that cgms can save lives, including my own. But much like it can save my life, I also believe that it can be a downfall, if used incorrectly. And that's what I've chosen to go off of my cgms for a little while. At this point, I'm only thinking a few weeks. Maybe around two or three weeks.
At that point, perhaps I'll find myself less reliant on my cgms for major information, and more used to having it used for the reason it was intended: to show me trends and warn me before lows and highs so that I can test and treat accordingly.
So, I ask for your help. Send prayers for me, since living alone with diabetes can be scary at times, and even more scary without cgms. And send me strength to put myself back where I need to be so that I can go back on my cgms AND get my a1c back in the range that I feel most comfortable in.
My favorite part about my appointment at my diabetes clinic, however, was a quote on the wall in the nurse's office. A quote that I believe all of us should live by and that I've taken to heart when dealing with this time in my diabetes life:
Never discourage anyone...who continually makes progress, no matter how slow. - Plato
I think we should all live by this quote, as well as all of our health care providers. The fact that this was on the wall of my diabetes clinic lets me know that they are NEVER going to berate me for my current status in my health, but will only encourage me to work harder.
A new year is upon us and I'm sad to say that in the past month I've been rather lax in keeping up with my diabetes blog. However, I have had a day today. A day I'd like to share with you.
For the past two days my blood sugar has been running almost perfectly. I've gotten high predictor and low predictor alarms, but I hadn't actually had a high or low alarm in almost 36 hours. I have NO idea how it happened, but it did. Perfection never really lasts though. I think we always know that.
This morning I got up and took off to work. I usually don't eat breakfast until I get to work so it wasn't until I got there that I realized that I'd used my last test strip for my morning test. Strike one.
Okay, with steady blood sugars for nearly two days, I figured that I could make it until lunch w/ my fairly accurate CGMS. I'm set, right?
Wrong. About two hours before I was set to go to lunch, my CGM 3 day time limit was up. Which means I needed another blood sugar test to recalibrate. Um...uh oh.
So, I think I'll try my best to tough it out until lunch. It's only 2 hours and Lord knows I've gone two hours without testing my blood sugar before. Two hours is nothing.
Except when about an hour before lunch I started to feel low. Uh, oh. I can't drive home to get strips, so I check for a juice box in my purse...only to find I don't have one. Crap.
I make my way to the next cubical and eat a couple of handfuls of my co-worker's skittles. And wait.
By the time I got home for lunch, I'd rebounded to almost 200. And I spent the rest of the day being exhausted from the low, and somewhat sluggish.
Now having strips or even having the juice box wouldn't have prevented the low, or the rebound. But having one little thing go wrong is bad enough, but when it's a million little things it ends up being an extra hour at work on a Friday night to make up for all the work I couldn't get done today.
Diabetes can be easy. For about 5 minutes at a time. Something always comes up. A high. A low. A missing juice box. A needed reset on CGM. Sometimes they all come up at the same time.
Back around Labor Day my transmitter for my MM cgms cracked after almost 4 years of use. I knew I would have to get a new one, but to satisfy my burning curiosity, I trialed the Dexcom first. Then I called MiniMed only to have them tell me that my insurance company wasn't going to pay for a new one. They didn't "cover it." Um. Okay. They did in the beginning. And had been paying for my sensors ever since.
They also cover the sensors for a co-worker's husband. Why now?
The lady I dealt with at MiniMed was amazing (and probably got sick of my incessant calling). She said they wanted a pre-approval first. That can take up to 30 days. I had borrowed a transmitter from a friend who had an extra (not sure how that happened) and was using my own sensor, but I was running out and my insurance wasn't paying for the transmitter/system OR the sensors.
I got blessed by T1 friends locally and by a friend in the D-OC who sent me some sensors in hopes it would get me through until insurance came through with a decision.
Friday I got a letter from my insurance saying they had deemed it "medically necessary" but that it still might not be paid. But from everything in the letter, it looked like I met the requirements. I called MiniMed and on Monday they told me they'd talked to my insurance company and that my insurance had no record of approval. The last thing the insurance had in their computer was dated November 22.
The letter from my insurance company was dated November 23rd. Sounds typical, right???
Anyway, MiniMed let me fax the letter, they looked it over and I literally had my new cgms system AND sensors the next day!!!
I feel guilty for not getting this post up sooner. I've been busy, crazy, stressed, and uninspired. However over due it is, here's my post about the decision I made regarding the Dexcom trial.
Over the week that I trialed Dex, I was fairly happy with the results. They were pretty much dead on with what was going on (including matching, almost always, my MiniMed CGMS). There were some areas that I felt that Dex did have some amazing things going for it.
First off, it catches a turn around in blood sugars more quickly than the MiniMed counterpart. Secondly, they are FDA approved for 7 days. Much more than the 3 days that the MiniMed is. Also, the Dex does not have to be taped down 10 thousand ways to keep it on (I use two pieces of medical tape and two IV-3000 tape pieces to hold down my MiniMed).
Another thing I loved about the Dexcom was that I could put the receiver on my night stand next to my head and it I ALWAYS heard it alarm (it vibrates before beeping, and let me tell you, on a wooden nightstand it will wake me up). As I've talked about previously, I don't always here my MiniMed alarms at night.
But, then there were the down sides to the Dexcom. I didn't like that you couldn't see past results on the graph. You can only see what your most recent result is; the rest is only a graph. On MiniMed, you can scroll back through the numbers. Even though graphs are incrediably visual and helpful, sometimes I like to see an actual number.
Then there was the fact that it was a separate device to lug around. I had such a horrible time remembering to bring it with me. And if you happen to get so far away that you're out of range, you've lost the numbers/readings from that time period. With MiniMed, the transmitter stores up to 30 minutes of results and feeds it to the pump once you are back in range. Often times at work I am up from my desk and walking around my office. Sometimes I get stuck somewhere else for a while (20 minutes or so at times) in another area helping a client. If my Dex receiver is laying on my desk, it's lost all of those readings. One morning I even left the receiver at home and had to come back to get it after I got to work.
Honestly, separate device and all, if the readings were more accurate than MiniMed for me, I probably would have been more willing to switch to Dexcom, especially with the ability to hear the alarms at night. But, I decided to stick with MiniMed because there honestly wasn't a huge difference in readings for me (I've always had decent results with MiniMed) and I loathed having another device to lug around in addition to my meter, pump, phone, and mp3 player.
Here's my honest advice to anyone thinking about trying out either the MiniMed or the Dexcom: TRY THEM BOTH. And give them both a chance. If Dexcom already had their integration with the Animas pump, I might have actually made the switch. But for now, I like having only one device to deal with.
As with anything, Your Diabetes May Vary. I know a lot of people have horrible results with MiniMed's CGMS and do much, much better on Dexcom. I'm glad that you found one that works so well for you. But since they were both so similar in accuracy, it really came down to convenience for me. And MiniMed won out.
I would like to say that everyone I dealt with at Dexcom was amazing. From the first person I spoke with on the phone to the wonderful Dexcom rep that met me to get me started with the trial. These people truly seem to love their job and believe in their product. And I'd like to thank them for the opportunity to compare the two systems. It meant a lot to work that out for myself and see what was the best fit for me.
Post two. Last night I lost several hours of feed on the receiver. But I'm sure it was my fault. I hadn't charged the receiver and I think it was just having trouble picking up the signal. I charged it today at work and there's not been an issue so far.
Accuracy today has been about the same as MiniMed. They are usually all within 20 points. I am noticing a faster turn around time. When my blood sugar starts to move quickly (after eating, treating a low, etc) the Dexcom picks up the changes way sooner than the MiniMed. But when my blood sugars are fairly stable, they both are sending about the same results.
I had some questions asked of me in my comments on my last post, so I'll do my best to answer them today. Adhesive: so far it's okay. The very edges of the tape are starting to peel up though, and it makes me wonder if I'm going to make it the full 7 days. I tried to find some Skin Tac here in my (very) small town to no avail. I found something similar, but it was way, way expensive and not worth the money if I chose not to go with Dexcom. I figure I'll tough it out the best I can for now.
Reception: I, too, have to keep my pump and my MiniMed CGM on the same side of my body of the read gets lost. It's annoying at times, but I have a system worked out so that it isn't an issue for me. The Dexcom has a much better range. They tell me it's around five feet. I've not noticed the exact amount. If I forget it somewhere, I'm usually far enough away from it that I'd lose signal anyway. But I leave it on my nightstand and it doesn't have problems picking up a signal, even when I'm sleeping on the transmitter.
Some of the things that I don't like about the Dexcom are the fact that you can't scroll back and see previous readings. I'm used to being able to scroll back on the MiniMed system, so it is a little strange to me. I also don't like that there is no place on the Dexcom to check to see the next calibration time. I'm horrible to forget to calibrate so I always check my MiniMed before I go to be to be sure I don't have to get up in the middle of the night to recalibrate. That being said, I've taken to calibrating both the MiniMed and the Dexcom with my pre-bed testing. So it's not a huge deal.
Let me know if you have tips, questions, etc. I'm here all week! :P
I'm ending my second full day on the Dexcom. I'm not sure what to say about it yet. First off, the insertion was way less painful than the MiniMed, but I think part of that was the fact that I couldn't see the needle on the Dex. And you can totally see the harpoon on the MiniMed sensor.
As far as accuracy goes, so far it's been about 50/50. I'm wearing the MiniMed now also. And I've been checking my blood sugar like crazy to compare them all. About half the time the Dexcom is closer and the other half of the time the MiniMed is closer. In a way that annoys me. I wish there was a clear cut, better option in order to make my choice easier. So far, there hasn't been.
I will also say that I am having a horrible time remembering to take the Dexcom receiver with me. I tend to leave it in one room and go to another for a while before I remember. And unlike the MiniMed, the Dexcom doesn't recover the missed data (MiniMed stores for 30 minutes). Other than wearing it on my pants, what's your suggestion for remembering to take it with me???
From those of you who've used both MiniMed and Dexcom I'd like to hear what the kicker for your final choice was?
Tomorrow's the day I pick up the trial Dex. Other than that, I'm just burned out on diabetes right now. I'm so tired to the wild blood sugar swings. I'm tired of feeling horrible from highs and shaky from lows. Hypo unawareness? Lately it seems to have taken a vacation on me. On one hand, that's
a good thing. I actually feel my lows. On the other hand, I'm a shaky sweaty mess when I'm in the high 60s. I hate that.
Part of me is hoping that the Dex will kick me into wanting to try harder. The other part of me wonders if I'll ever care again. Sure, I want to be healthy and as complication free as possible. But lately, the immediate work is something I am not only unmotivated to do, it also seems that when I try it doesn't do any good.
I go back on my endo in October. My plan after my last horrible appointment, was to be able to go back and and have a lower A1c and to be able to tell my endo that I had "fixed" my motivation issues. At this point I don't know if I'll be able to do that. And I don't know WHY.
Why don't I have the motivation? Why don't I want to do the things I know I should. I start out every day with good intentions...and they seem to fall by the wayside.
Heck, at this point I don't even have the motivation to blog much about diabetes. And I've been severely absent on Twitter. I feel guilty. I miss my friends. I feel like I'm failing as a patient advocate. But I just kind of wish diabetes wasn't around right now. And the more I don't want to feel this way, the more it seems to get worse.
I also feel like the fact that I'm frustrated and burned out is the only thing I blog about anymore and I'm tired of being a whiner. So, know that I love you all. And pray for me and my lack of motivation. And hopefully I'll stop being so negative on this blog.
Labor Day weekend was a really relaxing weekend for me. I didn't have any real plans and basically planned to do a whole lot of nothing all weekend. Monday was time for my "full change," meaning I was due to not only switch my infusion site, but also my CGM sensor. My sensor came off first since I have to recharge my transmitter for a while before reattaching. When I took my IV-3000 tape and medical tape off of my transmitter and prepared to disconnect I noticed that my transmitter had a crack in it. This is NOT a good thing, considering that the transmitter is supposed to be water tight.
I knew that it was time to order a new one. I've had this one since February of 2008. Over three and a half years. The average transmitter through MiniMed is only supposed to last around 2 years and is only under warranty for 6 months. I did what I thought I should, which is called the technical assistance line for MiniMed. After talking with them, they advised me to stop using the transmitter and call back on Tuesday to start the process of getting a new system approved by my insurance company.
Here's the deal: I really respect the things that MiniMed says. I do. But just like I used my sensors for more than 3 days, I had no desire to stop using this transmitter (even with it's cracks). Mostly because I had no desire to go without a sensor at all. I've become sadly dependant on them. And at that time, I'd not been getting strange readings or anything. So I taped up the transmitter with waterproof tape and medical tape and put it back on. But I knew this wasn't a permanent fix. And as much as I love my MiniMed pump and CGM system, I saw this as the perfect opportunity to check out the illusive Dexcom system.
I'll be honest, I have almost no problems with the MiniMed sensors. My readings are fairly accurate almost all of the time. I rarely have issues with "bad" sensors. And I'm certain that I don't have many of the same problems as a lot of MiniMed users have. That's most of the reason I haven't checked out the Dex earlier. But with the upgrade to the MiniMed Revel pump, I'm having issues hearing my alarms at night. And that worries me since I live alone. And while being high for several hours in a night is an issue, but not really a life or death issue...what if I were to have a low? That's the whole purpose for having the CGM system. To save my life.
So, I called Dexcom. I got in touch with my local rep and talked with her on the phone last week. She has graciously offered to let me test a Dex for a week (I could have done it through my doctor's office, but my next appointment isn't until mid-October, and it's a 2.5 hour drive for me). I meet with her Friday. So far, my experience with Dexcom has been good. I've gotten great customer service. And I'm excited to try the Dexcom out.
I'll be blogging about it after I get hooked up. I may even post daily, I'm not sure yet. Also, on the good side, I have a co-worker who's husband has the MiniMed CGM and happens to have a spare transmitter, which they have graciously let me borrow in case my current transmitter bites the dust and until I can make a decision on which system I'd like to go with.
I'll admit that I love having CGMS. But it has it's down sides as well. One of the things I hate is that the needles are so long. Another thing is that they aren't more accurate. Over time, I've found the best place for me to insert my sensor is on my thighs. My stomach just can't handle it. But with inserting them on my thighs, I've had some scar tissue build up in the past several years. As a result, sometimes my sensors don't want to go in as easily as they should.
Last week I was putting in a new sensor when I go the typical "thunk" that I get when I know I'm going to have to either take the needle (that's part way in) out and reinsert it, or that I'm going to have to push it in the rest of the way by hand. Either way, I HATE it when that happens.
The weird thing about this specific time when I was inserting was that I just felt like something was off with the needle. When I looked, I saw this:
I know it can be a little hard to see, but basically, the sensor that is encased in the needle for insertion purposes was sticking out slightly at the tip. Basically, it was bent out over the edge of the needle, making it impossible to finish the insertion process. Luckily I got a new sensor out and was able to insert it easily, but I'd never had anything like that happen before in all my years of CGMS usage.
One of the greatest things about having a CGMS is the ability to have super tight control over your blood sugars. Tight control (without CGMS) can lead to horrible lows that are often not caught in a timely manner. Having CGMS gives you the ability to catch those lows (and highs) before they get too bad and makes the overall control easier.
But, I have also noticed some down sides of having CGMS. I beep ALL THE TIME. Like constantly. Sure, it's good for knowing what's going on, but can happen at the most inconvenient times. One thing that tends to happen to me a lot is beeping in the middle of the night. I have weird episodes at night. Sometimes I will spike in the middle of the night for no apparent reason. Other times I will drop for no apparent reason. Making the CGMS a good thing. But causing me some serious sleep deprivation at other times.
Lately I've been having a lot of trouble sleeping. Not related to the beeping CGMS or diabetes. But trouble sleeping nontheless. However, beeping doesn't help the situation. And last night, my sensor finally died so I took it off to charge overnight. Part of me is scared to sleep without it, but there was nothing I could do because it was so late and a sensor would not have had time to calibrate before I went to bed.
I slept without the sensor on all night long. And I don't think I moved at all. I slept fantastically. I'm not sure if it was because I was so exhausted, or because I didn't have the beeping to wake me up. It was a wonderful night's sleep. But I woke up this morning with a blood sugar of 65. :/
So is it worth it? Do sleep better and risk getting sick or worse in my sleep? I don't think so. But sometimes I wish I could just take a break from the beeping.
Sometime between the last time I flew (around a year ago) and last week, Nashville airport got full body scanners. I know people have all sorts of issues with these scanners. People complain for many different reasons. To be honest, I don't really like the idea of them, but the way they effect me has more to do with my diabetes than with anything else. Truth be known, if it weren't for my insulin pump and cgm, I'd probably go through the full body scanners, even though I don't like the idea of them, just to speed things up.
But, sadly, Medtronic says NOT to take an insulin pump or cgm through a full body scanner. Here is the exact quote from their page:
So, even though I was running later than I like (let's not even talk about Nashville traffic during rush hour, okay?), I saw those scanners and immediately let the TSA agents know that I couldn't go through them. They asked if I was opting out. I said, yes, I was. But in a way, I don't feel like I was really opting out. I feel like I didn't have another choice.
I waited in the little clear box while they found a TSA agent to do the pat down. She was very nice, and I explained to her about what my insulin pump and CGM were and where my CGM was located (I have the fear of them touching it and then freaking out and making me do a strip search!!). She explained how she was going to do the pat down. It was over fairly quickly, but it was much more... thorough... than the last time I had to do a pat down.
Then they made me touch my pump and swabbed my hands for explosives (I've dealt with that before). And I was on my way. I don't know that I felt violated, per se. I mean, I didn't exactly enjoy it, but I didn't feel threatened or like I was sexually assaulted or anything. In fact, I didn't think a whole lot about the whole deal until I got home and my dad asked me about it.
I'm not saying that other people who have had horrible experiences are over reacting. Because the place that I see the most problems is in the inconsistency of how things like this are done. When I flew back, the other airport had regular metal detectors and I just walked right though and didn't even tell them about my pump or CGM. And if security is that different in different airports, you know that the way pat downs are done, depending on which TSA agent you get, are likely to vary just as much.
I guess I just wanted to share my experience. And my wish that I had another option. Besides the full body scanner OR a very "touchy" pat down.
I’ve had a history of issues with the new MiniMed Revel in regards to the alarms. During the day, they are fine. I love the predictor alerts. They have been fantastic for catching lows & highs BEFORE they get too low or too high. But at night, I don’t hear them. The new alerts left something to be desired. They are not as loud as the MiniMed 722. And sometimes I didn’t even hear the 722 alarms at night. But with the 722, after a certain amount of time the pump starts to vibrate. And continued to vibrate until you turned off the alarm. More than once that feature saved me. But with the new Revel, the alarms are not as loud. On top of that the vibrate feature on the pump is different from the 722. It vibrates for around 5 seconds and then stops. And doesn’t vibrate again for a while (I think about 15-20 minutes). This is a major issue for me.
It’s six of one, half a dozen of the other. I LOVE the predictor alerts. And during the day, the Revel is fantastic. But at night, especially when I live alone, I’m dealing with a potential disaster. I’ve been lucky so far, but I worry sometimes. I worry that the worst will happen. That I’ll be alone, not hear an alarm, and have a seizure or something.
I’ve talked about this in blogs before, and a couple of times on Twitter. But several weeks ago, Jen from Twitter (@Jenloves2travel) suggested using my old pump at a receiver of sorts. Basically, linking my sensor to BOTH pumps. And keeping the old 722 on my nightstand, making it easier to hear.
I didn’t even know that was possible. And it took some trickery, but it worked. I had to fake out the 722, by putting a reservoir in the pump and priming and then removing the reservoir. At that point I could link up a sensor easily.
I’ve been doing this most nights now. And it’s really giving me some piece of mind. I hope that it continues to work. And so far, it’s done some pretty awesome things. One night the 722 went off and I looked at the Revel. It had gone off a couple of times & I hadn’t heard it.
So, until MiniMed or some other company gives us the option of different volume levels and/or a separate receiver (Letter to Santa), this will have to work. Talk about creative engineering.
I want to give a BIG thanks to Jen, for the idea. And maybe it can be passed along to some of you, if you are having a similar problem.
I am not very OCD about many things, but one of the things that annoys me is if my infusion site for my insulin pump is on a different side of my body than my CGMS sensor site. That’s usually not such a big deal, except when I go out of town for a weekend knowing I’ll need to do a sensor change…and take everything to do the change, except a new sensor.
Because of that and because I had been waiting to hear if my new insurance policy will cover my sensors (it’s the same company, but a different policy, so some things might not be covered), I decided to take a week off from having my CGMS sensor in week before last.
By the end of day 2, I knew I was going to hate every second of it. Because I’m so used to having the sensor, I have gotten out of the habit of testing as regularly. I still check around 6-8 times a day, but not as often as I should (especially when I’m at work and I tend to get busy and forget to test).
When I don’t test regularly, I basically don’t have a clue what’s going on with my blood sugars. And because I was not testing as regularly, AND I didn’t have a sensor in, I have dealt with some crazy highs and lows in the past week. I had several lows, but managed to catch most of them before they go too terribly bad. I also had more highs than I’d like to admit. One day I nearly hit 400. And as we all know, that left me feeling horribly ill and tired. Having CGMS is like having a map of your blood sugars. Or even better, having GPS navigation. It tells you where you are going (maybe not how to get there…but still, it’s better than nothing) so you know what to expect. When you have CGMS, going without it is like taking off on a cross country trip. With no map AND no sense of direction. You might think you’re headed for California and end up in Wisconsin.
Sure, sometimes you can feel your highs and lows, but if you have been a diabetic for a long time like I have, often the ability of sense your highs and lows is dampened. Basically, your body gets so used to the highs and lows that it stops giving you the signs. If I’m lucky, I can still catch my highs and lows before they get too extreme, but sometimes I’ll be 52 and not even feel it. Once, I was 38 and still functioning normally. Other times a 69 will hit me so hard I’m left reeling.
That’s why I need my road map/GPS. I need my CGMS to keep me where I need to be. After 25 years of living with diabetes, my body has already suffered years of irreparable damage. And by keeping my blood sugars in range to the best of my ability, my body suffers less. This means fewer complications. Which means a longer, healthier life (are you listening insurance companies?? You should be).
By early last week, I put a new sensor in (leaving me 1 left). I needed to get my map back. I needed my control back. Mid-week a dear friend of mine in Nashville sent me a few extra sensors to tide me over until I heard something from my insurance company. Ironically, the next day I got my shipping confirmation from MiniMed that they were sending a new box of sensors (which means my insurance company said “okay”).
I got my ability to care for myself back. But how many people get turned down for CGMS, or have to fight it every step of the way? This post didn’t start out to be one talking about insurance. But it turned out that way. Sometimes I think my posts turn into something totally different for a reason. Maybe someone, somewhere will read this and realize how important it is to have good technology AND for people to have reasonable access to said technology.
There was life before CGMS. Just like there was life before the Internet. And cell phones. And cable TV. But I’d be willing to bet that people wouldn’t want to go back to a life without those technologies. I just hope and pray I never have to go back to life pre-CGMS and pre-pump.
The reservations became available last Monday and I stalked the internet site (continually clicking refresh) until I could reserve a table for two. I wasn’t sure who would be going with me, but I wasn’t going to go alone, and I was sure I’d find someone to go with me. Strangely enough, I only had 1 person (locally) respond to my request for someone to attend with me. Everyone seemed to be busy or too far away.
From the first time I heard Crystal perform on American Idol, I loved her voice. Finding out that she was a Type 1 diabetic made me love her even more. There’s just something about the d-connection that makes you root for a person. During her Idol run, I posted two openletters to her. I’m sure she never read them, but it was a way to get my thoughts out.
Amy T from Diabetes Mine ended up getting an incredible interview with her. Even then, I knew I’d love to meet Crystal. If for nothing more than to tell her that I think she’s amazing. And Saturday night I ended up standing in the same room, less than 6 feet from her.
First off, diabetes aside, Crystal (and her husband, Brian Walker, who also performed) is amazingly talented. She’s also amazingly funny and good natured. She came right out and said she didn’t have a set list, so part way through the performance, she basically started taking suggestions from the audience. She did a great mix of songs from her album (which you should GO BUY!), songs that are her’s but weren’t on the album, and covers of songs (some of which she performed on American Idol).
She talked about her first time performing at the Grand Ole Opry, which was totally impromptu the night before. She talked about being star struck by Vince Gill. It was kind of like listening to one of your friends telling you a cool story about something that happened to them. Crystal Bowersox gives down-to-earth a whole new meaning.
But, the diabetes was there too. I could see her diabetes tattoo on her wrist while she played her guitar. And before she came up on stage, she and her husband were sitting in the corner, not far from me. I couldn’t see them because of the way the wall was, but I heard the familiar “shunk” of a lancet device. I wasn’t listening for it. But I heard it. It’s a sound you can’t mistake when you’ve been hearing that sound for so many years.
Afterwards, Crystal stayed to sign autographs and take pictures. I tried not to go completely “12 year old stalker” on her. I tried to be normal. But I did tell her that the D-OC loves her. And I asked to see her tattoo (it’s beautiful by the way). I just wish I’d had enough sense about me to ask to get a picture of it.
I also managed to get her into trouble with her husband. :) I asked if she had a CGM. She told me she did, but didn't have on a sensor at the moment. I told her I didn't either (apparently we were both taking a break). But Brian was standing behind her and heard her say that and he said, "You don't have a sensor in? Why not?" :) She did ask me if I liked mine. I told her I loved it and told her about putting them on my thighs instead of my stomach (less brusing for me). Maybe I actually shared something with her that could help? That would be pretty awesome.
Meeting Crystal was pretty amazing. She’s an extremely talented songwriter, an amazing muscian and singer, and a very strong woman living with diabetes. I’m glad to say that I was able to meet her. Thanks, Crystal, for being so kind to all of your fans. I know it meant a lot to me, as I’m sure it did the others who were there.
I’ve noticed that other people asked you for a cure for diabetes this year for Christmas. As much as I would like a cure for diabetes (this year or next), I’ll leave the curing up to God. Instead, I’m asking you for next year’s Christmas present right now.
It’s kind of technical and doesn’t really exist yet, so I figured I’d better give you and your elves plenty of time to get it together and perfected (and approved by the FDA, of course).
Santa, I’d like the perfect insulin pump/CGMS system. Yup, perfect. At least perfect for me. I have a great system, but there are other systems that have things that I like. So instead of switching systems, I just want you to invent your own.
Here are some of the things that I’d like the new pump/CGMS to include:
1.) Interchangeable CGMS. Santa, I’d like to have the option of which CGMS to use. I know that some CGMS works better for different people. So, I’d like the option to try them all and chose what was best for me…without having to change my pump
2.) I’d like the CGMS to read to my pump (like my current MiniMed system) complete with
alarms and warnings, but I’d also like it to read to a second PDM that is also my blood sugar meter. (kind of a mix between the Animas Ping and the PDM for the OmniPod).
3.) I’d like to be able to operate my insulin pump from the aforementioned PDM/meter in the even that I want to wear a dress and don’t have easy access to my insulin pump screen and buttons.
4.) I’d also like the sensor for the CGMS to be FDA approved for 7 days, instead of my current 3 day approval for MiniMed’s CGMS.
5.) I’d like the CGMS to be accurate more often than it is. Instead of a 70% – 75% accuracy, I’d like to see it up around 90%.
6.) I’d like the meter to be as accurate as blood testing in a lab. The “small” differences in readings can mean a big deal in accurate treatment of a low or a high. It would help to have more accurate readings so that my care could be better.
7.) I’d like the alarms on the pump and the PDM/meter to have adjustable volume levels. Sometimes my current system just isn’t loud enough when it’s under 3 blankets and I’m asleep. Having a separate PDM on the night stand might help, but also, having louder alarms would be great because it would wake me up much easier than my currently alarms on my CGMS/pump.
And Santa, I’m going to leave my comment section open so that my other friends in the D-OC can add in their own updates to make the perfect pump/CGMS system. We deserve perfect if for no other reason than we have to work so hard because our bodies aren’t perfect.
