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On The Cusp.

I have a confession to make:  I have been having a hard time making peace with the CGM.  

There's been a lot going on in my little corner of the internet.  I've been very busy with dLife items, personal freelance work, and some exciting side-projects.  But aside from the worky bits, there are the general "life bits" that everyone contends with, from housework to financial obligations to being an equal and active member of my new little family (even if the family is only a fiance and a handful of grumpy cats at the moment).  Now add some diabetes management to the mix, with a dash of wedding planning. 

These days,  my life requires a lot of work, and there are moments when To Do lists become encyclopedic in volume.

At the risk of sounding a little overwhelmed (is it possible to be just plain "whelmed?"), I need to step back from some of these spinning plates and see if I can regain better balance.  Unfortunately, the CGM is not playing according to my master plan. 

On Tuesday morning, I put in a new sensor early in the morning, before I had to catch the 6:44 am train to the city.  Since I didn't want to wake Chris up and ask for his groggy assistance, I opted to place the sensor on my left thigh.  Standing in the bathroom, I leaned against the counter and pinged the sensor needle into my leg.  I pulled back the needle and gave the site a little press to secure the sticky tape underneath. Looked up at the counter quickly to gather up the medical waste, then looked at my leg.

Which appeared to have been shot.  With a rifle.  

There was a ton of blood streaming from the site, running down my leg.  I had to grab a quick wad of toilet paper and mop it up.  Knowing the train was coming in twenty minutes and I was still standing in my bathroom, I had to slap on several bandaids, hoping I wouldn't end up with a stain of sensor blood on the leg of my pants.  No time to become upset.  Must work through the frustration.

Bloody CGM sensor.
 

Grabbed my stuff and ran for the door, scurried downstairs and bolted to my car.  I drove to the train station and ditched my car in a no-parking zone, seeing the lights of my train in the distance.  Running like a madwoman, I dashed for the train, the site aching with every sure-footed step.  My tickets were printing as the train was pulling up to the platform and I raced into the nearest compartment. 

After finding my co-workers on the train and connecting the transmitter to my sensor site, I hoped that the day would settle down and I'd enjoy the seminar in NYC in freaking peace.  

No luck.  

The CGM pinged all day long.   "Bad sensor."  "Cal error."  "Enter BG Now."  I calibrated the damn thing four different times, had to restart the sensor once, and even after it settled down and started throwing results, the numbers were in a completely different path than my meter numbers.  Meter said 130 mg/dl, sensor claimed 246 mg/dl, throwing high glucose alarms and generally wagging it's finger at me.

Yes, I was calibrating while my numbers were steady.  I was avoiding eating so that I could hit some semblance of stride and ensure that the sensor was getting solid results.  It just wasn't working fast enough.  I understand that this technology takes time to become acclimated to and that the first day of a sensor is the most trying, but the ache in my thigh, the blood dried on my leg, and the frustration of dealing with a crying sensor instead of focusing on the seminar put me over the damn edge.

I ripped out the sensor on Tuesday night, upset and frustrated, burnt out and discouraged.  I haven't put another one back in yet. 

I pay my diabetes plenty of mind on a daily basis.  I test very, very regularly, I eat well, and I wear an insulin pump in efforts to deliver my insulin doses with precision.   I exercise more than most non-diabetics I know.  I feel like I give this disease - this body, this life - my all. 

I'm not sure I can give it more than I feel it deserves.  I'm struggling with this issue today, unsure of how to proceed.  I know that real-time results can show patterns in management and can also help protect me from the ebb and flow of highs and lows.  But when the numbers aren't correct, the alarms are beeping, and I'm spending more time dancing with a device instead of enjoying the day, I start to question the quality of life associated with some of this technology.  

I know many of you have worn  CGM devices.  How do you feel about them?  From your experience, is there a "best time" to start on one?  (As in:  Am I over-extending myself by trying this during a very stressful and chaotic time in my life?)  For someone who has worn a CGM long-term, how long did it take for the sensor to become part of your routine?  Are the results worth the hassle

I'm at a diabetes crossroad, frustrated and not sure what to do.  Any advice you guys have to offer would be greatly appreciated.

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Comments

Kerri, I don't have a CGM, but was just wondering if it might be better for you to only use it as needed to solve problems that crop up with your control. Maybe it would make it seem more like the technology was working for you instead of you working for the technology. Oh, and don't underestimate the challenge of running a household that includes cats!

I don't have a CGMS for O yet but if I had one that was giving us that much trouble, I'd be inclined to chuck it in, too.

You seem to be the kind of person who always has a hundred things going on, but this seems like it's even more chaotic than normal. Maybe giving it a break until after the wedding would be a good idea.

Ugh. This sounds so frustrating. It just seems that these CGMs are not ready for prime-time yet. I agree, maybe you could use it for, say, one week per month, or just every now and then to check patterns. I do wish to thank you, and others, who are trying out these devices and reporting back to the diabetes OC. It's really helpful to hear all of your experiences/frustrations.

Kerri

I experience days a little like that with mine. Actually my nights are more interrupted by my Dexcom giving me low errors when my BG is 95 and I have no insulin on board. In the Dexcom universe, my blood sugar is 72 or some such number.

I accept this is imperfect technology. Each new version makes it a little better. I think sometimes it's more painful because of the attention it demands and because I'm paying for the darn things myself.

Do I like the constant chatter - no? Would I give the Dexcom up - no way.

Though there is a part of me that questions whether my current depressive mood is because the Dexcom makes me fixate so much on the darn numbers.

hi kerri,

i don't have a CGM either, but i have been thinking a lot about using one. as i continue to come to terms with diabetes, i also come to the conclusion that sometimes, less of a focus on diabetes can actually be a healthy thing, both physically and mentally.

as my doctor has told me, the CGM is still in its infancy-- i think that if you are having trouble adjusting to its ways (that picture was SCARY!), give it some time off. that not only will help you, but also, maybe when you come back to it, it will have advanced to an even more user-friendly point.

best of luck with wedding planning-- i'd love to hear more about how the pump/dress alterations are going, since i'm preparing for a wedding of my own.

laura

I've only done a short CGMS trial but here are my two cents anyway. I think CGMS is a waste, if you are already testing a lot. Plus it's not actually "real time" and it's another bloody site. I agree with some of the others, that it's something I would want only to track a pattern for a short period of time, not as my constant companion. You shouldn't be living for this disease, and it seems like that's what it's coming to. If you need a break from it take one and try again later. Good luck to you!!!

Kerri,

It seems that about every other week when reading your blog you tell of middle of the night readings in the neighborhood of 36 or 40, so I would think that using the CGMS to help identify whether it's a basal or bolusing problem would be real helpful.

Easy for me to say, I know, since I don't have to jab one of these things into my leg :) But, I do get up one or two times a night to check my daughter's BG; usually her BG is just fine and my paranoia subsides for a few hours more sleep. So I would love have one of these things, especially now that she's running tack and her insulin needs go up and down by 50% or more on an almost daily basis. Maybe then I could occasionally sleep all the way through ...

Keep up the good fight!

Brent

Hi Kerri,
I felt the same way last September when I started on the Minimed CGMS. It took me two months to get comfortable with the settings and arranging my life to use it. If you don't want to deal with it on a busy week, don't. Thats what I did and those first two months I maybe wore it half of the days.

One thing I have learned is don't skimp on time when inserting a new sensor. If I'm running late I wait until my first break of the day or my lunch to put the sensor in. Or I waited until I got home from work before putting a new sensor in and that seems to have greatly improved the # of "bad sensor" or "sensor error" messages I get.

I will say that in the first three months my A1c did improve by 0.5% even using it occasionally; so there is some incentive and positives to it while you're trying to figure it out. :D

I hope this helps! All I can say is give it time and if you're frustrated with it then don't use it. Wait until you are content before putting in a new sensor. Good luck!

Amber

Hi Kerri,
I agree with Amber. It takes some time to get used to the sensor and this might not be the right time for you. If you do continue to use it now, you certainly should not put in a new sensor when you are rushed because problems will always arise. Thank you for the picture. I do put tape over the sensor to keep it in place.
Remember the CGM is supposed to help you control your diabetes not make it more difficult.

My initial experience/frustration with the Minimed CGM tracks yours. It seemed that I had an inordinate number of bad sensors, weak signals, and difficulty accomplishing satisfactory insertions. I persevered, called Minimed and the local trainer a lot, and eventually felt it was worth it. Still, last year I didn't use it for several months in a row. When I returned to it about a month ago everything seemed easier and the up sides seemed much more dominant than the down sides. I am learning a lot from the trend data and the more intimate understanding of how quickly or slowly what I do influences my blood glucose. My bottom line: this is a really an awesome tool that will become comfortable in time but if you feel it is too much now, that is OK. Maybe that's what I did during my hiatus. Finally, since this is my first comment, I must thank you for the contribution you have made to the quality of my self management. Your blog obviously takes much time and thought. There are tons of us out here who really appreciate it. Best regards.

kerri, I've never tried a CGMS but it sounds like, with everything else you have going on right now, it's probably a little too stressful! I'm sure it has many good benefits, but maybe you could take a break from it for now and try again later.

I did a trial run of the Minimed CGM. A few of the days, it was BANG on; a few of the other days it was extremely innaccurate. I think it is somewhat unethical for this product to be made with a real-time display when the accuracy is currently insufficient!
If you are looking for trend data, then you need to ignore it and simply plot your normal tests and then compare the two later.
When I had that bang on day with the CGM, it was empowering and made me feel secure and in control, but when it was inaccurate, it wasn't just an annoyance and a hassle - it played on all the insecurities that I , and we all have.
In the end, I was glad to have tried it, but I'm not going to invest my own money into it until the technology is reliable and accurate.

Hi, Kerri. I only wore mine once a month. That way, I could chart trends but also not become as overwhelemd with its complexities. The balance worked for me, maybe it would for you?

Kerry,

I had to stop using my cgm because the sensors were causing lots of tissue damage and scarring. I had one incident where my pump had come disconnected and the sensor did not warn me that my sugar was rising rapidly. When I felt funny and tested, I was at 600--then sensor told me that I was at 145. Then there was the issue of low signals. Pump is sitting right next to the sensor, but the pump tells me that it cannot get a signal...sensor was fully recharged. I know that they will get better with this,but for right now, it is not worth the money to me unless I am going through a period where I need to chart over a 48 hour period what my sugars are doing. Good luck.

Well it seems that everyone pretty much said what I was going to say.

I was thinking maybe it would be better to concentrate on working with the CGMS after the wedding when you have one less major event going on in your life.

And then there are some good suggestions on making it a once in a while thing rather than daily.

I think wearing a CGMS would drive me to the brink. We spend so much energy on our diabetes in myriad ways, even ways I don't realize much of the time, but that constant demand of even more time and attention would not be worth it to me. Unless the technology increases, I'm staying away from it. I can be a little OCD about certain things so the CGMS would drive me absolutely batty.

I think you deserve more from your life than managing diabetes--don't we all?

Kerri,

I am not going through any major events in my life and as you know I started the day after you did and my experience mirrors yours.

My main reason for wanting the CGM was I have hypoglycemic unawareness and I avoid exercise because of it.

I went through a long appeal process and my insurance is paying 100%, but I am not getting what I thought I would from the CGM. I had a few good days and yes I did feel empowered, but I still was testing constantly to see if it was accurate. If the thing gave accurate readings and the 15 minute delay existed then yes, yes it would be so worth it, but it is not accurate enough for me.

My endo said to try it for 6 months, but the CDE said to try 4 sensors and I would know. So I will try it 2 more times, but like you I have not used it this past week.

Another issue is I thought it would teach me to low carb more ;), but seriously I wanted to time my boluses better so that I never went above 150, but I don't see that working with this new tool.

My daughter has been wearing the minimed CGM for a JDRF trail for 6 months now. Our beginnings were just like yours and there were many times we contemplated dropping out of the trial because of the constant alarms and frustrations. For the first 2-3 months I have to say I hated the thing. We've gotten used to it, get fewer alarms now, get more accurate results now, and actually miss it when she takes a day off. My advise is if you get a couple annoying alarms, turn the sensor off. Later in the day when you have more time,try turning it back on and see if you get fewer alarms and better results. ANother trick we learned was to calibrate when it's very close to acurate with the meter reading (of course this doesn't work for the first calibration with a new sensor). Lastly, we keep reminding our daughter that she can control the CGM and not let it control her. If she gets a weak signal, bad censor, or cal error while at school, she turns it off until she gets home. The CGM is far from perfect, but if you decide to give it another shot, I hope this helps. If you decide you're done with it for now, know that that is a good decision too. It's been great for us as parents when she's not with us and at night. But since you're all grown up and taking great care of yourself, the benefits may just not outweigh the frustrations.

Kerri,

I've been wearing the Minimed CGSM since October 2006, off and on. I won't lie, it takes a littl work like everyone else says. I started on it to get ready for pregnancy and now, as I type, I'm sitting here with a healthy little 6-week old. One thing that I did, even during pregnancy, was take a break from the sensors. Whenever it was time for a sensor to come out (whether it was the first day or after a re-start making it six days.... yes, I'm one of those people!) I always went without putting another one in for at least one day. It kept me sane. And now that he's here, I'm still wearing the sensors, but I've been taking longer breaks - about three days.

Don't give up on it just yet - I know you've written about wanting to have kids and I'll tell you, I, personally, won't go through a pregnancy without the CGMS by my side. But, for your sanity, it might be a good thing to wait to use it "hard-core" until after the wedding. Hope you make the right choice for you!

Love,
Samantha

I stopped wearing the minilink several months ago when I repeatedly developed rashes and hives from the adhesive. In addition to that I also experienced many bruises, bleeding, calibration errors, bad sensor errors and annoying alarms all hours of the day and night. Like you, it interrupted my work, my sleep, just about every aspect of my life. I've thought about giving it another try but I'm also questioning whether it's worth it...

I got married this past August so I can relate to what a stressful time this is for you. It's hard enough to manage diabetes when you aren't planning a major event!

I don't know about you but I have a pretty good sense of what my bloodsugar is even before I test it. I’ve had type 1 diabetes since childhood and I think it’s unavoidable that it’s always in the back of your mind. Wearing the sensor for almost a year made me pretty dependant on it and actually made me lose much of that awareness that I had of the subtle changes in how i felt when my bg was rising and falling. I also became a little obsessed with watching the numbers and monitoring the constant fluctuations (sometimes overcompensating for highs and lows to try and achieve perfect numbers). I think it served as more of a distraction and a constant reminder that my body is flawed.

Feel free to email me if you’d like to know more about my experience. Good luck & looking forward to reading more of your posts!

Kerri,

You said that you were careful to start the sensor when you were stable, but you also mentioned how upset you were several times. I know that when I get harried or frustrated my BG skyrockets in no time flat. Just a suggestion.

I have 7 more sensors. I'm honestly not sure I'm going to order more. I generally wear one for as long as I can, then take a long break, then start over.

I've had a handful of sensors I've found helpful, but most are utterly irritating and worthless.

I don't have Diabetes, but my 2 year old was diagnosed in July when she was 19 months old. I read your blog often, i love your writing, your sense of humor, it's enjoyable.
It's also nice to read a blog of a successful Diabetic women =) I worry non stop about my girls future, her health, her happiness. If I'll do all the right thing now, so that she'll be responsable later.

Well, I just wanted to drop in and say HI. and let you know you have yet another fan.
Thank You for your writing.

oh yea..Your blog about your wedding dress brought tears to my eyes..

Gretchen K

Kerri, I was surprised the extent to which CGM made me engage MUCH more with my diabetes (and I thought I already was engaged!) This was actually the hardest part for me. I thought I was testing a lot but I sure saw more 180s and way higher than I wanted to when I started. Since my A1c was good I thought I was doing well and hadn't realized how the lows were bringing me the "good" A1c!

For me, the CGM has been good for two things: 1) helping fix my basal rates; 2) fixing the low or high blood sugar so at least when I get these they don't last too long.

I think there is a threshold where you are willing to put up with the technical issues because your diabetes mgmt and /or quality of life has improved.

It took me awhile to reach that point - I stopped wearing the STS for months and only came back when I got the SEVEN and found huge differences. I also got pregnant again and found CGM to be invaluable, truly. I really wish I had had it when I was trying to get my A1c low enough to get pregnant...I agree with the other posts, wouldn't think of being pregnant without it and feel very lucky to afford it (with a little help from extending the life!)

There are a lot of great suggestions here - I think the one about inserting when you really have time is a great one and of course I know that's all relative. Nearly missed trains are the story of my life so I get that completely! But it's true, when possible, don't start on a day when you know things will be crazy anyway, if you can avoid it - the frustrating aspects might be even more frustrating.

One other suggestion - I insert my sensor the night before and then "turn on" in the morning to give it more time to settle down. Though this means a night without it, I always do that now and the accuracy seems better.

I also sort of assume the accuracy won't be that great on the first day, even with this switch - just trying to remember that has helped me.

Even when A1cs don't improve, I think having less time in hypoglycemia and less time in hyperglycemia is probably really valuable - it would be nice to see a long term trial on this to really know.

You are amazing. Thanks so much as always for all that you share - for me, it's always just so reassuring to see you out there. Apologies for the long response!

I dont have the cgms but with the emotional part I have given
mine a name. Im going through a mid life diabetes crisis or change !

I tried the Dexcom STS, SEVEN and the Minimed version. I think the SEVEN is the best of the lot but it is sometimes off. I had bad luck with the MM device, it wouldn't react fast enough to changes and the display wasn't useful without a 1 hour trend. The Dex is better but neither gives you complete information all the time.

Hi Kerri
I let go of the CGMS for a number of reasons, financial being number one. When it works, it is amazing...when it doesn't, it is frustrating, can be scary and is downright depressing. I did learn a lot about myself though - like I drop immediately after I eat and skyrocket at about the 90 minute mark. So I almost always use a dual or square bolus now. I am already obsessive about the numbers, but this technology made me go over the edge! It wasn't worth the time and effort (a lot of each) that went into it. As the technology improves, I would love to use it again...but for now, I won't give this disease any more of my time or sanity!

Kerri,

I wore the Medtronic CGMS for a trial to see if I wanted to buy it. The first week of the trial, I hated it. The next week I loved it. My insurance picked it up, so I got it. Sometimes, the sensor doesn't work like I want it to and I get bloody sites like the one you showed, so I take a sensor break. When I go back to it three days later I love it. I definitely think it is a love/hate relationship, but I am beginning to learn how to work with it and it has actually grown on me. I don't know how I would go without it now. Hope that helps. :) It does get better.

Being a short-term CGM user (since November) I agree with Kelly's comment - don't do it when you're in a rush.

I find mornings are the best time to start- but I take a train as well, so when I insert a new sensor on weekday mornings I just grab my sensor, inserter, and tape and do it at work after I get settled in.

Since I work in an office my day is pretty stable (I usually eat the same thing for b'fast and lunch,) so I have a full eight hours to watch it adjust.

Also another reason I prefer mornings is that like others I restart my sensor after three days. I did my last sensor a week ago Sunday night and last night hit my 3rd "restart" (it's been stable and accurate,) but it was 7pm and I got my "sensor end" message at 7pm as I was running out the door for a party. Not a big deal, but I wasn't expecting it and would rather keep a schedule of midmorning new sensors and restarts.

Also my endo said to avoid bleeding don't "pinch" the skin like you would a regular injection, rather spread your skin taught so your sensor injects as far in as possible, which apparently traverses the blood vessels and hits deeper in.

Best of luck - I agree there's a big curve getting used to the CGM. I'm still learning new things and being surprised at when I can expect it to be accurate versus lag.

kerri,
everything you wrote is why i don't want a CGMS. i just think the technology hasn't caught up to the idea of what we hope it to be. it's just not there yet. i agree with shannon, i'd wait until after the wedding, where you have one less thing to deal with.

Hi Kerri

I've been using the MM CGMS for 11 months now and can understand how you feel. I had really high expectations and it was frustrating that it wasn't perfect.

However, I stuck with it, my HbA1c is down from 7 to 5.5 and I would hate to be without it. I find the trend data invaluable - it doesn't really matter whether I'm 130 or 150, what matters is that I can see I'm rising or falling and that really informs the decisions I make.

I used to test about 4 times a day but now with the alarms I know so much earlier when I'm rising and can address it quickly.

I'd agree with the others about not inserting sensors when you're in a rush. Most of the time it does only take a couple of minutes, but you can guarantee the day it'll go wrong will be the day you have no spare time to mess around with it. If I know I have an early start but I'll need to change my sensor, I normally do it the night before and then I just have to turn it on in the morning.

www.insulinpumpforums.com have quite a few people using CGMS and they're full of helpful tips and advice.

Best of luck with it

Ali

Hi Kerri:

I ran across you on Shannon's blog. My 5 1/2 year old daughter was diagnosed on 9/11 also...in 2003.

We have had the real time sensors for months now, but we rarely ever use them. Which is a real shame, because when we have and they work right they are awesome.

But the problem is just what you showed - especially on our 5 1/2 year old they just seem to traumatic. The needles seems long and the gauge is huge. It seems like 2/3 of the time we have trouble with pain when we put it on and getting it to work right.

Hopefully these things will continue to improve. I think in the whole scheme of things, for a first version of this technology its not that bad.

Hi Kerri,

I wish this had worked out better for you...don't give up on it yet! This may not be the right time or the right sensor for you, but as you know the future holds great promises. Give it a rest for now so you can enjoy your wedding plans. If you do decide to try again, make up a disclosure...CGM - makes me a Crazy Godawful Mess!

Hi Kerri. Sorry I'm such a late comer on such a sore sensor topic, but I've been so busy i didn't have a chance to jump in on the conversation until now, but read my blog tomorrow and I'll be talking about a conversation I had today with my favorite endo and his diabetes nurse educator, regarding some really helpful tips about the sensor. However, my opinion is, I'm taking on the challenge of wearing the CGM. I don't think i've given it a fair chance, but with the helpful hints i got today and a little more time on the CGM, I think i'll be better qualified to make an honest opinion. However, as we all know, all technology has its ups and downs, and so many people swear by the sensor that I feel its in all of our best interests to work through the difficulties...isn't this reminiscent of when we first went on the pump and the problems we had? If we can overcome them, we should be able to overcome the sensor. :]

So much for my two cents, I'm in San Francisco on my way back to Vegas, so have a great night, check out my blog tomorrow, you might find it helpful.

-Mollie

I agree with Kelly and James. You need to have time and space for adding CGM into your life. Wait until after the wedding/honeymoon.

When my son started on CGM we took holidays as a family for a month which gave us the time and space to get use to it all. He didn't like the first 3-4 sensors (bleeding, getting caught on things, pain of improper site locations) but he is warming to them now - and becoming more interested in his own diabetes management as a result. I sleep better too - instead of the fitful hypo-paranoia "sleep" I have had these last 8 years. No alarm means no problem - I don't have to get out out of bed to test him.

Through trial and error we found that the site works best for him on his back (less nerve endings and blood vessels) - put your hand on your waist and lift your thumb - around there. We use aseptic technique and put plastic skin over the whole thing to stabilise. We warm the sensor for 12 hours at room temp and only insert when we know we can manage to get the 4 calibrations in during the next 4 hours. We keep it in for 6 days - when we get "Sensor end" after day 3, we "Start new sensor" again and recalibrate. The alignment between BSL and CGM is always reasonable on day 1 and good for the rest of the time - remembering that there is always 20 minute lag between the blood and interstitial fluid data.

We plan to use a sensor each week for the next 10 weeks to help keep his sugar in range at school. It is a major cost for us in Australia - is CGM expensive in the US, or does health insurance support its use?

All the best
Diana


I have another CGMS. I used one several years ago. It was more trouble at the time than it was worth. More pain, more hassle, more energy than I could spare. I came back to it this year after 2 visits to the hospital. The beeps are annoying, but then my husband reminds me that at least I am still alive to hear them. When they become too much, take a break. Take a few days and go back to old fashioned finger sticks and watching what you eat. Then put it back in and see if that helps.

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