Struggling with control


#1

Lately, my diabetes has been running over me like a Mac truck driven by a rabid weasel on speed.

Last night, I was laying in bed, throwing a pity party for myself because my blood sugars are not in control, my insulin pump is lying to me about my blood sugar, and woe is me, I have a rough life. I’m done.

I’ve been passively letting my doctor make changes to my insulin pump settings whenever I go in for my quarterly check-ups. Each time, they tell me the numbers aren’t good and make a few minor tweaks to the pump settings.

I’m not waiting around anymore. I’m not going to let the doctors decide what’s best for me when that’s clearly not working – and never really has been. Not in years.

Today I went into the pump and shifted the settings to push more insulin. No, I’m not a doctor. But I know the general pattern of out-of-control that I’m seeing. And I know the shifts my doctor has been making on my behalf are not aggressive enough, because it isn’t getting better.

So I’m taking control.

I’m going to beat the living crap out of my diabetes. I may not get it perfect, but by Cthulhu, I can do better than the numbers I’ve been getting. Passively floating along, hoping this magically solves itself is stupid.

I’m not stupid.

The last 30 days, my avg BG is 185. Not good enough.

Time to quit messing around and get it together. So today, I started a spreadsheet tracking my averages and my pump settings. I know where the biggest out-of-whack numbers are. For me, that’s post-breakfast. Most work days, I eat packaged breakfast foods (granola bars, etc.) so I know I’m entering my carb counts right. So I’m starting there – adjusting my carb ratios to give more insulin (and lowering my basal rates during that time, since I’ve noticed I go low if I skip breakfast).

Let’s do this.

I have no idea if the roller coaster of my actual BGs is contributing to my issues with sensors being out of calibration. But it can’t be helping. And either way, it’s a problem I can work on. Solve the problems you can, then worry about the other problems later. Small steps, but steps rather than just standing around feeling sorry for myself.


#2

@CaM2 :
Nobody changes our pump settings but us.

We certainly have conversations with our Endo regarding pump settings however this is a conversation in which the Endo provides suggestions and we may or may not agree. In the end if any changes are to be done, we make the actual changes in the pump.

As well, we do not wait for a 3 month Endo to make changes. If we see changes are likely to be beneficial, we make the change and monitor over the next few days to see if we have actually made an improvement or not.

We also were having problems with (significant) post breakfast highs which IMHO were contributing to roller coaster action the remainder of the day. (This still remains one of our biggest problems although we are doing better with this now then we were in the past.) I do think that trying to correct everything at once is overwhelming and potentially not super productive. I like your approach of picking out where seems to be the biggest problem and going after that first. When we (mostly) fixed the breakfast issue, the rest of the day naturally settled down. So when we subsequently looked at lunch and dinner times, any adjustments were (at that point) fine tuning.

IMHO the two biggest things we did for breakfast time which was helpful was a 40% basal bump starting at 5AM for 3 hours coupled with an attempt to do a 45 minute pre-bolus (each day is day by day so not always successful as mornings are sometimes simply chaotic) to give the insulin a headstart over the breakfast food. The combination of these two actions has proven (for us) to be quite beneficial. (The pre-bolus is the hardest to be consistent with.)

The other area I like to address sooner rather than later is overnight basals. My feeling is a good overnight BG can help to lead into a good “next day”. No idea if that has any medical basis but it feels good to me.


#3

Allowing your Doc to make your adjustments… Insanity.

Start by making sure your sensor readings are accurate. Otherwise, your driving without being able to see the road. Calibrate once. Don’t eat 2 hours prior. Check when you insert and again before you calibrate. You want the reading within 40 points or so (up for debate). DO NOT calibrate every time you check your BG.

Then, start by getting your overnight dosages to produce a BG trend that you like.

Basal adjustments can be tricky. I always try to post images of my sensor data because people can understand the system more fully that way. Beyond that, it might be helpful to enter all the data into the sensor, like when you eat and how much insulin you took. The more data you take, the easier we will be able to help you. But, break off a piece that you think you can accomplish to start with.

This is an example of what I do when I’m trying to get the system under control. BG man are manual blood sugars that I took with my BG machine to check the sensor reading. Basals are the hourly rates of insulin delivery that the pump is infusing.


#4

@CaM2 Glad you are taking ownership of your disease again! Many of us (myself and several of my D-friends) struggle with engagement issues on occasion just due to the seeming endless nature of our D-journey. Engagement for us is like an emotional rollercoaster, we have all gone through periods of very enagaged to I just don’t care. The fact that you are now “driving” your experience is HUGE! Blogs like TUD are a great place to get positive re-inforcement, ideas, tips, and general knowledge. You are not alone in this journey, and ultimately you are in control of what you are able to control. Today is the best day ever! I sincerely hope you are able to fine tune your bg numbers to a level that you think is best with ease. :slightly_smiling_face:


#5

Yeah, I’ve been having a lot of difficulty with my Enlite sensors not being even close to accurate. I’ve been on this pump (Medtronic 630g) for roughly a year now. I’d say about 25-30% of the time, when I go to do a pre-breakfast or pre-dinner calibration, my blood sugar is off by way more than the 5-10% margin of error that I should see.

Often, it’s off by as much as 100 mg/dL or more.

About every 6-8 weeks, I end up calling Medtronic support because a sensor has expired in the first 3 days because of multiple calibration failures. It makes me very reluctant to trust the sensor data at any given moment.


#6

Your personification of diabetes as an enemy resonates with me. Not everyone likes this tactic but it has served me well. I see diabetes as my mortal enemy because that is simply fact. If you let it have its way with you, you will likely die a slow and miserable death.

Young people coined a term I find useful in this discussion, “frenemy.” It’s an enemy you hold closely, like a close friend. Well, we can’t really physically distance ourselves from diabetes; it is unfortunately physically woven into our body. But we can also see diabetes as an external foe that we can defeat, crush, and reduce into a smaller irritant.

I watch my diabetes data every day. I’ve found that this act of observing my data subconsciously engages and motivates me to move the data in a better direction. When I can post great data, I can pump my fist like the victorious warrior that I am. I take pride when I perform well.

On the other hand, when my numbers don’t measure up, I simply write it off due to diabetes. And vow to start doing better, starting right now. Perfection is not the goal here; I take comfort in just reaching for better. When each of the better steps start to add up, I eventually find myself in an excellent position with my diabetes.

I liked your post because I see in it a spirit that has served me well. It’s the fundamental dissatisfaction with the status-quo, a righteous anger harnessed for a return to health that impresses me.

You live with diabetes for 1440 minutes of every day, 8,760 hours of every year. This experience adds up and counts for something. I would never let a doctor make changes on my pump. And I’m not afraid to respectfully disagree with my doctor. When I disagree, I tell them in no uncertain terms. This is my diabetes!

As you so eloquently stated, “I’m not stupid. So, I’m taking control. Let’s do this!”

With any revolutionary diabetes change, it all starts with fierce spirit. You have that now. Now arm yourself with the best diabetes data that you can measure and start making it better! Good luck.

By the way, I noticed that you’ve lived with diabetes since 1990. This marks your 28th year of this struggle. Twenty eight years is exactly when I finally took full ownership with my diabetes, complete with an angry realization that doctors were simply documenting my demise, not doing what I needed to thrive. It was kind of like that moment in the Wizard of Oz when the dog, Toto, pulled back the curtain and exposed the wizard for the sham that he was. I still find doctors useful but they no longer appear on a pedestal in my eyes.


Problems with Medtronic 670G: ("Beginner's frustration" and reps promising that will eventually go away...)
#7

LOL! You had better luck than me. I had at least 22 sensors replaced by MM due to failures. In about a year. Pretty sad, eh? :slight_smile:


#8

I can’t remember if this is my second or third Medtronic pump that had sensors? I’ve slept too many times in between.

But I do remember that this is the first time I’ve stuck with the sensors. Previous attempts failed so miserably that I gave up before ever re-ordering sensors at all. If I can’t even get through the set of sensors that came with the pump, why bother? Or at least, that was my attitude.

The ones I have now are better. But nowhere near as good as the trainer led me to expect. :-/


#9

MM won’t admit how bad they are. they always claim that CGM is “just for trends”. to which I call, “BS”.


#10

Yeah, it will be interesting to see how good the 670 sensors are. I mean, a closed loop system ought to have good sensors, am I right? My confidence isn’t as high as I would like it to be.


#11

yes, which is why I wouldn’t even call it “closed loop”. it’s not accurate enough, and I don’t even have to try it for myself. I read the complaints.

With my G5 I can leave the house without a meter. No way would I do that with Enlites. I tried it ONE time. Big mistake.


#12

While I’ve heard good things about the 670 sensors, I would be concerned about the algorithm the sensors feed. I only know about the 670 what people have written about their experience. The reports have definitely been mixed.


#13

Yes, I’ve heard both good and bad, but then again, when Enlites were the current version, some people liked them for accuracy as well. At least, that was their claim. :slight_smile:


#14

Wow, your post really hits home with me. Been there many times and have been in support groups, workshops and conferences where many have the same struggle.
And when you said small steps, I wanted to jump up and down with joy. So many people try to fix everything right away, which usually leads to frustration and failure. Small, baby steps, is the best way to start taking back some control.
Just pick one or two things that will give you the biggest bang for your effort. It sounds like sensors are a big issue and having a CGM that tracks accurately is what can give you the best information. It’s been years since I used the older Medtronic sensors. (Not great luck with them). I have been using a Dexcom for years and love it, but have heard the new 670 has a much better accuracy rate and many have had great success with it. But by the time your pump is ready for replacement, one of the many AP pumps in trials will be available.
So long story short, get CGM figured out (maybe Dexcom or Libre) and read a couple books for refreshing your knowledge. Pumping Insulin by John Walsh and Practical CGM by Gary Schindler are great ones for fine tuning pump settings and getting the most out of your CGM.
Good luck and small baby steps! You’ve made it this far, the rest will be easy because you know what you need to do. Keep smiling and keep fighting!


#15

My endo always gives me some adjustments. Usually i make them and try it out, but I always end up tweaking them. We have to do this stuff ourselves to really do things well since so many factors can make things change daily or even hourly.

I went through a long time from when i was diagnosed to about when I was 26 that I just never made a good effort to stay on top of things. I am paying for it now, and that is what really made me start cracking down. Getting a CGM helped immensely for me (but for me it was a Dexcom) as one of my biggest issues was never getting into the habit of checking my blood sugar. Having the CGM makes it almost impossible to ignore.

My biggest struggles now are that I have a hard time keeping under 170 after eating, and then I am high for a long time because it takes FOREVER for my bg to drop. The insulin just doesn’t work fast enough, and then that is compounded by the fact that, as I said earlier, things change constantly that affect things. One of the biggest for me (that I am litterally battling this minute) is my sites randomly fail after maybe 1.5 days usually. There is no telling when they will die. I might start noticing slow absorption a few hours before, or it migh be working perfectly then it just stops absorbing completely. My BG skyrocketed after lunch, and it wasn’t even that high in carbs. Now I will be chasing a high and feeling crappy for the next 5 hours. That is perhaps my biggest annoyance that leaves me screaming in my head (or sometimes audibly expressing said frustration, to the irritation of others sometimes); it takes 5 minutes for BG to shoot up over 300, and 5 hours for it to finally come back down.


#16

Wearing an insulin pump is a huge learning curve and it did take us a year or two to figure it all out and to feel confident enough to make changes.

But now I like to be the one to make changes to my daughter’s pump. I will often confer with her diabetes team if I’m not sure about something, but last week my daughter’s nurse wanted her to up all her night-time basals, but I knew that they weren’t the problem so I didn’t. I live with my daughter and I’m her prime care-giver and I would much rather be the one making the decisions.

I’m sure there are lots of people who don’t really understand how the pump works, or how to make changes etc etc, and who rely heavily on their endo or team, but making changes only every time you see your endo is not often enough!!!

So it’s awesome that you are educating yourself and figuring it out so that you can make the changes. I’m sure your control over your diabetes will improve.


#17

Concur with the recommendation of John Walsh’s Pumping Insulin. I don’t have Gary’s book.


#18

Oh, crap. Can we work with reliable hardware? You aint got to waste your body experimenting with unreliable hardware. Makes me mad! I have had NO problems with my Omnipod pump and Dexcom sensor, for what its worth. I originally got off medtronic equip due to high incidence of hardware failure…for what its worth. I’m suspicious of tubed pumps.


#19

That statement floors me. LOL!

I’ve owned I think FIVE models of MM pumps. Other than a rare few failures that weren’t my fault, such as button failure, everything else that went bad was either me getting a pump submersed in Mission Bay (salt water, for about 5 minutes), or swimming in a pool with a supposed water-tight pump (it turned out to have a hairline crack under the soft MM label at the end of the pump), or dropping a pump on concrete. Beyond that, issues have been confined to two types of sets. The old Soft Sets had QC issues–sometimes insulin would pour out of the connector due to a bad seal. Then the Quick Sets had issues for me: tons of “no delivery”, due mostly to kinked cannulas. After that, it’s been very smooth sailing with the various 5xx models I’ve owned, along with the use of only Sure-T’s.

To sum up, I can’t imagine how my luck could be so much better than yours, regarding the quality or functioning of MM pumps. As I said, years ago there were some issues, as noted above.


#20

There are others. But, I recognize that people favor different hardware and I’d rather not get into that here. I think hes having more of an issue w/ sensors. Its frustrating because if you don’t trust your hardware, what can you trust? Makes things so difficult.

I guess what strikes me as particularly difficult/frustrating about this scenario is that he’s got the typical ‘diabetes’ problem, but there’s a bunch of hardware difficulty and perhaps software difficulty on top of it. Current situation feels insurmountable, as is. Like, hes sorta stuck, dependent of the doc’s adjustments, because how you unravel that much stuff is beyond me. Seems like a long, hard road. I wish there was a way to simplify some of those factors out so that he could work with what is fundamentally important to him…the diabetes dosage stuff.

I believe it is dangerous for him to be on a pump without reliable sensor data. That troubles me. Better off with no pump at all. Hate to say it, but if it were me, I would return to manual injection, at least until some fundamental questions have answers. Its a safety thing.

P.S. I really love the whole rabid weasel idea.