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Continuous Glucose Monitoring:  The Joys and Pains


Jul 1, 2011

Rachel Garlinghouse

"Good news," my diabetes nurse educator says to me. "Your new insurance covers continuous glucose monitoring supplies!" I give her a half-smile as my brain screams at me, "CGM?  Really?  Something else to deal with on top of this damn disease, an insulin pump, exercise, and nutrition?"  But I comply, and a CGM is added to the rest of my paraphernalia.

A few nights later, I hear, BEEP, BEEP, BEEEEEP!  The sound of failure alarms me at 2:00 a.m.  My blood sugar is high.  Again.  I get up, test, inject, guzzle a glass of water, and flop back into bed.  Thirty minutes later, my CGM alarms me again.  And it continues every half-hour until my blood sugar returns to a normal range.   I wake up for the day already exhausted.

Right after breakfast and before I head to the gym, my CGM beeps again, this time alerting me to a low blood sugar.  I look at my pump and it displays a threatening number, 82, alongside two double arrows indicating that my sugar is dropping quickly.  I sigh, test, roll my eyes, and gulp down half a glass of grape juice.  And then, every ten minutes for thirty more minutes, my CGM yells at me, daring me to attempt to work out.   

CGM technology can be wonderful.  I have avoided nights of extreme highs (sleeping in a comatose state of sugar-induced bliss) and driving my car during dangerous lows.  I have been able to better control my diabetes.   My A1Cs are usually better when I've been using my CGM.  But, in all honesty, sometimes I just don't want to know.  I want to live in oblivion.   

The CGM also has what I consider to be a high rate of error.  While my pump may report my blood sugar is 130, it could very well be 80 and dropping.  Sometimes my blood sugar is normal when the CGM says I'm low.   I might be in the middle of an enjoyable moment, such as dinner with friends, when the BEEP, BEEP, BEEP interrupts the conversation to alert me that again, I might not have great control.   Stop.  Test.  Sigh.  Correct (or not).  Try to be happy again.  Try to be normal.

Syringes, a pump, a CGM---while these are all important to diabetes management, they are not a cure.  Not even close.  I dare say that sometimes, life is harder rather than easier with greater technology.  Sometimes ignorance is bliss.  Of course, good diabetes management is important, and technology helps one obtain better management, but there is always a cost:  a "BEEP" during a special moment, a bad pump set that prevents you from enjoying your own birthday cake, or the occasional sting of a syringe that reminds you that you are not, in fact, anywhere close to normal.  You have diabetes.  Your life is different---forever and always.  

I will only have peace when there is a cure---a cure that works and that doesn't compromise my ethics.  I hope and pray for a cure, but meanwhile, I try to live my best life possible by doing what I know I'm supposed to:  eating well, exercising, pumping, and listening and responding to the insistent beeps of my CGM.

 

 


Categories: A1C, Blood Glucose, Blood Sugar, Continuous Glucose Monitor, Diabetes, Diabetes, Diabetes Nurse Educator/CDE, Exercise, Insulin Pumps, Low Blood Sugar, Nutrition Research, Syringes



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Comments

Posted by Anonymous on 1 July 2011

I am also a Type 1 pump and sensor user for about 15 years and RN CDE. As far as the alarms, especially for the highs, you seem to have not adjusted the High Alert alarm. I have my patients set the High at 2 hours and 30 minutes, because it takes about that much time for your blood sugars to come down. Do you have yours set at 30 minutes? If so, I would ask to change it to a more realistic amount of time. Good Luck!

Posted by Anonymous on 1 July 2011

You said it the exact way I think many of us feel!

Posted by Anonymous on 2 July 2011

I agree. Insertion process is difficult for me. It is deep and painful. Still trying to convince myself that is the way to go!

Posted by Anonymous on 3 July 2011

I've been a Minimed pumper for nearly 20 years, and have been very happy with my pumps (I now have a Paradigm). My doctor considered me a great candidate for a CGM for at least a couple of years before my insurance finally started covering it last year. As a faithful Minimed user, I went with their device. I had read (in their own info at the time) that the results may not match my meter (I believe a 20% difference was to be expected), and I found that to be true, and viewed it as something I would just have to live with. But I switched doctors last summer, and he was a fan of the Dexcom, which he encouraged me to try. To my delight, I have found the Dexcom to be much closer to my meter readings, and as a result my A1Cs have come down from the low 8s to just barely over 7.0!! I do get my annoying share of "wakeup calls" from my CGM (just had one last night for a low reading) but I find I really don't like to be separated from it for long - I like knowing where I am and how I'm doing. Also - I'm not trying to bash Minimed and I'm not getting kickbacks from Dexcom(!). I just found that the Dexcom device worked better for me; others may find that Minimed works quite well for them and gives them results that are not far off from their meter reading. As I mutter "Oh, just shut up!!!" under my breath as I'm searching for the silencer button, I make a mental note to see if whether it's going off because of something I did/did not do, or because my basal rates need to be tweaked. I've done some tweaking and am making progress, so hopefully the alarms will be less frequent. Glad I have it!

Posted by Anonymous on 3 July 2011

Good story. Very realistic, except she forgot to mention the beeps that occur for calibrations, sensor error, and lost signal. When CGM works it's nice but there can be a lot of annoyances that go along with it. Please let a real cure come soon!!!

Posted by Anonymous on 4 July 2011

Rachel, I agree 100%. CGM, while well intended, doesn't work worth a damn at this point in time. If you're low, you'll wake up...about the time the CGM gives you the head's up. Until they devise a true artificial pancreas, or cure, CGM will be only for those that obsess.

Posted by Colleen Fuller on 5 July 2011

I thought Rachel's article was very good. Technology such as the CGM and even the insulin pump have not been shown to lower the rate of complications or mortality among people with diabetes. Insulin is now the most-cited drug for people admitted to hospital ERs, in spite of the availability of home glucose monitoring. We are paying an arm and a leg for these tools, but the basic thing we need are insulins that are more stable and predictable - and these are no longer available since the massive withdrawal of animal-sourced insulin in the mid-1990s. Rachel has really caught the dilemma that many of us face, hoping that new technology will improve our quality of life, but discovering that mainly what they do is suck dollars out of our pocketbooks.

Posted by Rick on 5 July 2011

i love my medtronic insulin pump but i tried the cgm and pretty much(for whatever reason) found it was so far off my meter readings as to make it useless. insertion isn't fun at all. i feel that medtronic should be paying people to use these monitors until and if they can make them failsafe because this is all a process to make an implantable pump/meter. they want you to be a guinea pig. i've been type for 46 years and at this time my advice is to not get paranoid about it. there are people who test ten and twenty times a day. that's crazy. i test four to six times and my a1c's are consistently just below or just above seven percent. again, they are using people to hopefully perfect this device in hopes of getting to something better. that's fine but it shouldn't cost thousands of dollars without being perfect.

Posted by Anonymous on 5 July 2011

My partner uses multiple injections. More than once he's mistaken short for long term and had lows in the teens. I've had to get the paramedics. Lots of beeps in the night would be better than this. I wish he would try CGM.

Posted by Anonymous on 5 July 2011

Is Rachel for or against stem search ? I seem to get the idea that she is against it.
As a father that lost a child to the complications of Type 1, I am for almost anything that will find a cure.

Posted by Anonymous on 5 July 2011

What a great article!! This week I am taking a vacation from my CGM (I use the Minimed Paradigm pump.) It feels great and my blood sugars are good, but I will start up again next week.

Posted by shosty on 5 July 2011

We need to advocate for the return of the implantable pump, that releases insulin into the abdomen, that was recently written about here. People are flying to France to get insulin refills for this device, which is not available any longer in the US. My daughter tried the CGM and it was difficult, and not always accurate. There are better avenues to help people, but these avenues may not make the same profit for companies.

Rick, it's great that you get such good A1C's with fewer tests, but please don't judge others as "crazy" for testing more. You wouldn't believe the variation in manageability among type 1's, and some have other health problems that contribute to the need for more testing, too. Consider yourself luckier, but not saner, than others!

Posted by Anonymous on 5 July 2011

I had a pancreas transplant, so I got to throw away all of my diabetes suppliers. However, after I was diagnosed with "juvenile diabetes" in the 70's-way before the home glucose monitor became my buddy, all they did was check your fasting blood sugar once a month - before HgA1c testing. So I ended up with BGs out of control for the first ten years without ever knowing it and I ended up with "all the 'opathies (nephropathy, neuropathy, retinopathy...) Even though it is a chore, it is worth it to prevent the complications.

Posted by Anonymous on 5 July 2011

Thanks, everyone. Your input is priceless --- it gives me a I will not feel victimized by diabetes, because I --- I ---decide what to use, and I know enough to decline offers that serve another, and not the patient. I guess we diabetics have to hang together --- otherwise, we surely will hang alone --- pardon the paraphrase.

Posted by dorisjdickson@msn.com on 6 July 2011

When the heck did 82 become a "threatening number"? 82 is normal. It is absolutely perfectly normal!

And why on earth, obviously knowing the CGMS is often 40% inaccurate, does this piece not mention manually testing to confirm the 82 one way or another?

If the point about this was the piece of equipment and how it makes one feel (and you didn't want it), since when do we "have" to do what anyone tells us to do? We're he customer yet you you "comply"! We're not robots; we're not their subordinates or their children who will get spanked or sent to our rooms if we don't want an expensive piece of inaccuarate, very invasive equipment. So I hate that you were made to feel you had to agree to it or you wouldn't be compliant.

It is possible to gain control, regain awareness, get normalized A1Cs and do it safely. It's just no one has been able to express that to you. I've been a juvenile onset for >34 years. My A1c is between 4.7-5.1 consistently. I don't pass out, have seizures, get in car accidents, etc. I DO test often (12-15 timesa a day). (It's not bad enough meters are ~20% inaccurate, set a CGMS to something that's already inaccurate and it's easy to get 40% inaccuracy.)

I do use insulin in small dosess (including using 3 small Levemir doses instead of Lantus). I do not eat high carb. The combination of these three techniques alleviates the risks and accomplishes what many believe is an impossible task. My point - there are options to have control, safely without an unwanted, inccurate, invasive, expensive CGMS.

Posted by Jerry Smith on 6 July 2011

There is a long learning curve for CGM. I have had mine since 2007 and have reached the point where I cannot live without it. It is not perfect technology and it is very expensive.

I am on Medicare and am now forced to pay out of pocket. Medicare denies coverage because it is 'precautionary' and not medically necessary. However, it can be both cost effective and life saving.

CGM requires a big committment in time, money, and education. CGM is not for everyone but it can be very beneficial and will only get better.

Posted by Anonymous on 6 July 2011

For some type 1's getting to 82 is a warning we're going low.I know myself, if I'm at 82 and then not eat or drink anything, go out and mow grass or take a walk my BG plummets.And,I am more afraid of lows than I am the highs. I'm one of those weird diabetics who keeps my BG levels above 100 and my A1c around 7. For the life of me I am wondering about a Type 1 who's able to keep an A1c between 4.5-5 with no problem??? But, each of us is unique and good for you!

I can see where the CGM would benefit some but I have decided against a CGM. I'm 50 and don't want one more device to complicate my life. I have done well with my insulin pump. I was diagnosed in my 30's with Type 1 and to this day have NEVER had an incident, high or low, where I ended up in the hospital. We are often led to believe we must keep our readings between 90-100 when that is not possible or, in my opinion, reality. There are too many variables from exercise, stress, to infusion site problems,to heat or cold, good days/bad days, so I do my best to manage my diabetes. I really hate it when I hear medical people and diabetics themselves use the word "control" for diabetes.

It was good to read about your experience Rachel and good luck with keeping your d-life manageable!

Posted by Anonymous on 6 July 2011

I can tell you're wearing the MM sensor.

Try the DEXCOM!

No insertion pain, MORE accurate!

I've used both, and trust me, it is SO much more accurate.

Posted by Mariabear on 6 July 2011

For those considering the sensor- don't be discouraged!

I've used both & the DexCom sensor is the way to go:

NO PAIN inserting (smaller needle/cannula)
ACCURATE ACCURATE ACCURATE

You don't mention which sensor you're on, but by your article, I am guessing you are on the Medtronic.

Posted by Mariabear on 6 July 2011

The blog "six until me" is from a CGM user- very candid.

It has been a big help. :)

Posted by Anonymous on 7 July 2011

We are all unique and respond to diffrent things at diffrent times. There is a lot of minimed bashing going on but I have had great sucess with their pump and cgm so we just have to do our rrsearch, try what we feel will work best and change when things dont turn out ad planned. That is just simply life with diabetes. There is not one sure process for every person.

Posted by Anonymous on 8 July 2011

Been T1 for over 45 years with NO complications and ANY tool, no matter if it's "exact" or not, that will help me keep healthy, I will adapt and use accordingly. Came a long way from testing urine in a test tube. Even the BG meters have only a 20% accuracy but if used properly, can be vital in monitoring those highs and lows. VERY IMPORTANT - ALWAYS test before deciding!!

Posted by Anonymous on 10 July 2011

I use the Minimed pump and sensor. Although the 20% inaccuracy is annoying, more often than not, I am within a couple of points of my meter. I am going to research the Dexcom, though because my warranty is about up. I have many low blood sugar incidents that were from ignoring my alarm. We are closer than ever to the Artificial Pancreas. This has a reservoir of Glucagon and Insulin. The pump delivers it when needed. I personally can't wait!! Diabetics in the UK, Canada, and other countries are having great success with it. We just need our FDA to hurry up and pass it!

Posted by Anonymous on 12 July 2011

I have been a Type 1 for about 35 years. I to tried the pump with the CGM sytem about a year ago. The system was the Medtronic Paradym. I stopped using it because it was not worth the hassel. The CGM never gave a reading that was even close to a finger stick. Until they have a "Plug & Play" system that takes care of itself. I'm not interested. As for a cure, well it's nice to have dreams. There's to much money to be made, it's not likely there will ever be a cure.

Posted by Anonymous on 17 August 2011

THANKS Rachel,
I got my CGM in Feb this year, and don't think I have gotten a good nights sleep since........... If I did I don't remember it in my haze.....LOL
Your article summed it up perfectly. But oh so nicely, I have used a bunch of unprintable words....... It seems to distrub my wife more than me when an alarm wakes her first.
Not sure why but knowing others feel likewise helps on some level. No time to drag out the Psych book.
Again Thanks for the great article. John

Posted by sarammartin on 30 August 2011

My mom is in her "young" 60's and found this article very spot on, to her feelings about another thing attached to her body, telling her what to do. She has been a type 1 for 35 years, and lately experienced scary hospital visit lows. She's realized that she may have been underplaying her diabetes, the opposite of embracing it, even with a pump and testing etc...she was getting farther and farther away from a community of help. She is cool and independent and is going through a revival, realizing she needs to connect with other type 1's who understand. Any good Midwest/Iowa/Central Iowa groups or individuals out there? Any inspiring supportive boards you all could suggest? After the scare we had last week, her family (me, my sisters, our dad) are realizing we need to know more and help her more as well. Thanks ahead of time!

Posted by Anonymous on 24 January 2013

I have been a type 1 for almost 60 years and have been usinga Dexcom and Omni Pod for over 3 years and I feelmuch safes as I lost the symptomology of highs and lows a long time ago, mu cgm has saved my life on a number of occassions. The reason for the differences in CGM and a reg. blood reading could be the following especially if you have been a diabetic for a long time. Due to the preservatives in insulin akam-cresol aka methyl phenol aka BENZENE this particular chemical destroys tissues and blood does not circulate well through damaged tissues consequently affecting the interstatial fluid consequently affecting the reading of your CGM, in spite of the differences my CGM makes me feel more secure and not so afraid.

Posted by Anonymous on 5 February 2013

I have hypoglycemia awareness,& I have used a Medtronic pump for the last 17 years. I have used the Medtronic CGM, but it was never accurate, & the insertion was very painful. I STARTED using the Dexcom G4 CGM about two months ago, & it is great, very accurate. I love the alarms because I can treat a low, use temporary basel or give a correction dose. I would recommend the Dexcom to everyone. It has made my life easier. Already I have a lower A1c.


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