Insulin:Carb all over the place; pump sucks; general rant

Type 1 and LADA
1

Got some good advice a while back on why I need almost double the insulin when I work late and have to eat dinner at my desk. Last night was one of those nights. Except this time, instead of being high even with nearly double the insulin, I dropped to 50. Pretty sick and tired of this crap. How am I supposed to know if my body is going to demand 1:10 or 1:6? Should I just ‘play it safe’ and be very high afterwards? Should I play the odds that I will need the 1:6 9 times out of 10, and accept that on that that 10th time I will go very low?

I hated MDI b/c my levels were pretty crazy. But honestly, they are crazy on the pump too. I no longer believe there is a way to stay even. I am going to be up and down all the time no matter what I do. My insulin:carb seems to vary on a whim.

Let me also slam the pump for other reasons. They tell you the pump site won’t bother you. Utter bull. Half the time it gets irritated for various reasons, including accidentally yanking on the tubing, you banging it, other people banging it, etc. They tell you it won’t interfere with your sleep. Well, when the site is irritated, I can’t sleep on that side. The tubing gets in the way as I toss and turn, etc. When the site is irritated, taking a bolus is painful. The pump is also annoying to carry around in my pocket - I think the bulge looks terrible. I think it looks worse clipped to my belt, and I don’t always wear a belt anyway. I don’t want to strap it to my leg b/c then I can’t easily access it. In short, the pump is just a gimmick. I hate it. I have nothing nice to say about it other than when necessary, I am able to skip a meal. That is the ONE thing it’s good for.

I am told I should exercise more, but that’s going to mean even more wacky insulin:carb swings. No thanks.

I want one day off. I am raging right now. So mad at diabetes and my useless doctors. I give so much time and effort to this disease, and I feel it gets me no where. Maybe I should stop giving a ■■■■.

2

Sorry things are rough. Not giving a ■■■■ has some appeal however I suspect that that ends up being quite a bit of work too? Going to the bathroom all the time, that slushy feeling, losing energy are all kind of chores too.

I get pretty smooth results at work perhaps by not eating all that much when I am there? I dunno if you are trying this. I can’t legitimately say I am ‘low carb’ because I tend to eat more when I’m not at work and eat stuff like bread, noodles, etc. that are frowned upon to do that. At the same time, I have a piece of toast (12G) for breakfast, serving of nuts and cheese (8G) mid morning, 1/2 sandwich (same bread) plus more nuts @ lunch (maybe 20G as I also indulge in some Propel…) and then suprise more nuts and cheese in the afternoon? My work week BG are very smooth and I realize that it’s probably because I don’t push the envelope? I’m still 5’10" and maybe 185-190 lbs so it’s not a lot of food but it might be worth exploring an option like that foodwise? Even if I err and don’t eat enough nuts, the ‘buzz’ isn’t totally huge b/c there’s not enough insulin to knock me on my butt unlike when I eat more substantially? Even doing a short ‘trial’ like this can help perhaps suggest ratios that may be more accurate? It sounds like your ratios change a lot.

I have suprises sometimes where boluses don’t seem to work but a lot of that I blame on my not being as careful counting carbs or eating larger servings “mmmm, that was yummy, I’ll have seconds, maybe 20G of carbs?” sort of guessing scenarios? I have noticed w/ the pump that it doesn’t take much at all to get out of whack but w/ the smaller serving strategy “out of whack” seems to be more like 150-160 instead of 250?

I don’t have any ideas about “pump fashion” either. I clip it to my belt and belay the loose tube around the open end of my belt. To me, the insulin works so much better, I don’t worry about having it hangin’ around.

Sorry if you’ve already tried this stuff but I’m not sure what else to suggest?

3

thanks man. there is nothing to suggest. that’s what is so frustrating. it’s not going to get any better. i started off years ago with a great attitude. now my attitude sucks b/c working hard at it has appox. the same result as not working hard at it. i used to wonder what I was doing wrong. now i am resigned to inherently inconsistent results. there are too many variables to consider when deciding how much insulin you need. how much activity have i had lately? what is my stress level? what has my sleep been like? how much fat have i consumed today? possible air bubbles in the tubing? possible inaccurate meter reading? am i a little heavier or lighter than i was yesterday? what is the alignment of the planets? what does my psychic say? Like, who the hell knows?

4

You gotta watch out for those planetary alignments! They make everything a bit more tricky! And if you have a good insulin psychic, you need to share!

I understand your frustration. I am newly Dx’ed but I can see how years of battling this can make you feel a little crazy and a lot frustrated! I am gonna throw something out there, have you had your thyroid checked? I’m beginning to think that thyroid function could make a difference on how the body handles insulin. I am on 2 different thyroid meds and I’ve noticed the days I forget to take them I have more swings. Like a said just throwing it out there…

5

yeah - we wondered about the thyroid last year or the year before. there’s a lot of thyroid issues in my family, so we tested. thankfully my thyroid is fine. thanks for you comment and good luck.

6

I think a certain amount of expectation setting has to be done. You might see lots of websites, even this website, with people saying how their bg’s are absolutely perfect all the time. But they are folks either with very easy to control forms of diabetes, not the kind you and me have.

Yes, insulin sensitivities can vary all over the place. No, this is not the sort of crap the simplistic websites or books tell you about. Yes, this is a factor limiting how good our control can be. Yes, sometimes we have to accept the possibility of a hypo.

Personally, with me, sometimes I can cruise along for a few weeks with no major problems and I’m not even working hard on bg control yet getting good results. Than blam, something changes, and all of a sudden I have to work real hard to get a level of control far worse than when things had been easy. Then things go back to the “easy cruising” way again. Frustrating! But what’s most frustrating of all, is that I’m working the hardest on my bg control is when I’m getting the worst results.

If you want to read about some of the factors limiting how good control can be in a typical (not necessarily easy-to-control) T1 you might go google “DCCT” with “hypoglycemia”. The books and websites don’t talk about this much but it’s very real and actually decently addressed by the DCCT.

7

I have been on insulin pump therapy for 16 1/2 years except for 3 months between 2 of my pumps. I would never, ever ever want to go off my pump. Taking shots sucked for a number of reasons that I don’t have to deal with on a pump.



If your infusion sites are bothering you, change the type of set you are using. I have used 3 or 4 different types of sets over the years, and yes, some were more irritating than others. For a long while, I had to use the bent needle sets because all of the canula sets irritated me. Now it’s the other way around. But even so, some canula sets still irritate, while others don’t. Also, if you are covering your site with an adhesive tape or barrier, you could be reacting to that, so change brands and see if that helps. I use Tegaderm because it is the least irritating to me for the last few years. Hypofix left me bright red and itchy. Do you use a barrier/prep wipe before you put the site in? I use I.V. Prep because Skin-Prep made me itch. If I don’t use a barrier wipe, I will start itching within a day and a half of putting the site in.



The pump isn’t any different than MDI when covering for your food. On your carbs, there are lots of factors when bolusing for carbs, the same as there are a lot of factors when covering meals with MDI. High fat meals will affect the rate your carbs digest. I use an extended bolus for high fat meals because they digest slower. A high fiber meal will affect the bolusing amount for the carbs eaten. For example, rice digests and raises blood sugar quickly whereas eating something like beans will be much slower. If you eat the same number of carbs of each (at different meals) and bolus the same for both, at 2 hours your BG will be higher with rice and lower with beans.



I clip my pump to my waistband. The only time in 16+ years I have used a leg band/pouch is when I was wearing a dress instead of a skirt or pants. The bulge has never bothered me since pumps are now the size of pagers and smaller than most cell phones people clip to their waistbands. I won’t buy a pump that doesn’t have an integrated low profile clip because I don’t want it in my pocket and I don’t want to put it in a case with a clip. Those are cumbersome.



I understand the wanting a day off thing. Having diabetes since I was 9, which now makes it 39+ years, I have gone through the diabetes burnout periods when I am just sick of it. I don’t act on it any more. When I was young I did and it resulted in me almost losing my sight to retinopathy. Yes, diabetes does suck, but the complications suck even more, so when I am burned out, the most I rebel now is to not check my blood sugar a zillion times a day. My life is worth living, even with diabetes, so I force myself to “give a ■■■■” when I wish I didn’t have to.



If you do not have a good doc, that will make a difference. I don’t currently have a good doc, but I have had diabetes and a pump long enough, I can do it by myself. Have you read any of the books on insulin pumping? “Pumping Insulin” by John Walsh and Ruth Roberts is really good. It’ll be the best $18-ish you’ll ever spend to get your diabetes life on a pump on track.



Your life really is worth it!



Michelle

Western Washington State

8

I can sure feel your rage!

Don’t give up!!!

Couple of things… have you read two really great books: Pumping Insulin (John Walsh) and Think Like a Pancreas (Scheiner)? I keep going back to re-read stuff in both these books and they’re great. I learned heaps right after I decided not to give up (I’d given up for a long time for similar reasons to you) and I’m still learning and I’ve had D for many years.

For irritated sites, have you tried some kind of barrier under the inset? A cream, a barrier wipe (eg Skin Prep) or a physical barrier? Maybe change out your site every 2 days instead of every 3.

If you hate being tethered, consider a tubeless (eg Omnipod) next time. As for the bulge, I hate that too, but I figure that pumps are getting smaller and smaller. Soon they will be almost invisible. I have a heap of dresses in my wardrobe that are rarely worn because I don’t like the pump on my thigh or on my bra. Not much choice really, but I can give you a list a mile long of why I totally love my pump.

Diabetes is relentless. No one will argue with that. It’s a great big pain in the behind for many of us, but we choose to keep going because of those dreaded complications, some of which I already have, but I don’t want them to get worse. And because I don’t want to feel that drowsy, thirsty, energy-depleting high all the time.

For the unexpected low at work, did you do more activity in the afternoon or evening? Were you concentrating harder? Were you less stressed than usual? Did you over-bolus for a snack earlier? Did you bolus for protein and fat as well as the carbs? So many reasons! We have to be analysts and scientists to run our diabetes!

On the other hand, surely no one gets it perfect every time. There are so many variables and for some, there’s invisible stuff going on in the body that just doesn’t pop up and say, hey you have to consider this too, today.

I know for me, sometimes when I’m working, I’m concentrating so hard, I don’t test as often as I should and I just can’t stop to do the “why is this happening” or “what did I do in the last 24 hours that will make this bolus different” and so on. Sometimes, for me, all that has to be a trade-off for other priorities.

Breathe! You’ve got this far, so it’s definitely got you somewhere!! Don’t be so hard on yourself! Keep asking questions! Maybe someone here will hit on just the right explanation for you!

9

If your sites are irritated, due to an allergy to the adhesive or something, then that could definitely cause erratic insulin absorption and wacky numbers. Might be worth looking into using either another type of infusion set or else putting something like IV 3000 down before insertion so that the adhesive isn’t touching your skin. Also make sure you are rotating sites … I recently had LOTS of problems with random highs where I would up my pump settings and then have a bunch of random lows and just could not find a balance. I switched to my arms as sites and they disappeared. I think my stomach need a bit of a break.

Also, not sure how long you have been on the pump, but maybe consider going off it temporarily, a “pump vacation.” I was where you are a few months ago, just so sick of having the pump always there, numbers that were all over the place, etc. I took a week and went back to MDI. My numbers were TERRIBLE and within a day I missed the pump. It really made me appreciate it again when I went back a week alter.

10

About stopping giving a ■■■■. Don’t. It’s not worth it. I had a major depression in the beginning of 2010, and ate a lot of carbs, and didn’t bolus consistently, and didn’t always put my pump back on immediately after the insulin had run out or the site needed changing, and my sugars went up to where I COULDN’T get them back down, and by September I was in a coma and almost died.

Most people like the pump, but you don’t have to – it’s a personal decision. The pump is not for everyone. I think you’ve gotten a lot of good suggestions from the people here, and should probably try them, but in the end, if the pump is not for you, then so be it. What matters is that you keep trying. Not gonna get perfection, and I don’t see any way to avoid lows and highs when you have long-standing Type 1. They suck, no ■■■■!, but they are part of life, and seems to me you just have to treat them and go on with life.

Not meaning to be obnoxious about it, but what has helped me avoid BG swings is reduced carb eating. Like Bernstein says, low carbs means low doses of insulin, and smaller percentage mistakes. When I do partake of carbs (with fat), like on Christmas dinner, I find that it affects my BGs for days. I don’t know if this is usual, or only me.

I, too, have raged at times (although mine is expressed by deep sadness and unwillingness to be proactive), and I really needed someone to tell me “now just take your insulin!” or “time to meter!”, but didn’t have such a person. I don’t know if you need that or not, but if you do, there are plenty of people here to support you.

Good luck!

11

Thanks Michelle. I know I can’t just quit. In fact, I have to just plod along and accept crappy results, like Tim suggests. Sucks. I have a good doc, but you know, those of us with diabetes for a few years know more about the disease than the doctors, even the good ones. The doctor is there to write me a prescription, that’s it. He can’t help me with my bad control/bad attitude. He doesn’t know why my insulin:carb varies for no apparent reason. He seems to think I’m doing ok.

I have never read anything about pumping or diabetes, so maybe I will pick up the book you recommend. Thanks again.

12

Grego, I’ve felt the same way for YEARS until about a few months ago. I’ve had D for 26.5yrs and was always completely against following any sort of meal plan. But about 2 months ago i got fed up with fluctuation in numbers despite continuing the change my insulin ratios and basils. So, I agree with acidrock, that monitoring carb intake is beneficial. I try not to go over 45g per sitting…but in the last few days I’ve done a duel wave bolus, which has helped tremendously with after meal spikes. Good luck and don’t give up!!

13

hi, jennifer. the site irritation isn’t an allergic reaction. it happens when i whack it or tug it or something. or if I don’t put it in right. i have considered changing infusion sets. I’m reluctant to change b/c i order the supplies 3 months at a time. what if I really don’t like the new infusion sets? it’s just fear. my new insurance co also sucks, and they gave me a ridiculously hard time even getting pump supplies. i’m afraid they will give me more grief if i change anything.

thanks for your response.

14

hi, susi. you know my endo recommended the omnipod. i didn’t want to do it b/c i thought a bulge under my shirt would be worse than what i have now. also, how do you, um, get close to someone with that thing on your abdomen? seems like it would be a distraction. you get rid of the tether, but you replace it with a bigger thing attached to you. eh. just didn’t seem worth the change. in fact, that’s the most frustrating thing: i don’t want any of the available treatments. i used to be able to eat whatever i wanted and not think about it. i used to be able to exercise a lot without worrying. then diabetes happened. i want to go back to my normal life. i’ve had this disease almost a decade and i still don’t really accept it. i know i’m being unreasonable a little childish. that’s just who i am i guess. when i can’t solve a problem, i get pissy. :smiley:

15

thanks, natalie. i didn’t think you were obnoxious!

16

You might try calling your pump company and they may send you free samples of infusion sets that might work better for you.

Agree with everyone, there is no choice but to keep going with this relentless disease. Diabetes doesn’t care about me so I have to care about me (that’s how I look at it). I can either stick the needles in or I can face retinopathy or kidney failure, my choice.

17

Hey, you’re right, Don. I bet Animas would do that. Thank you.

18

Another thing i just remembered, i was running low throughout the nght and didn’t know it. So all day i was high, because i became insulin resistant. and each night the cycle continued. So it might be worth trying to figure out your numbers at unexpected times…that might help with your number and fluctuaiontions throughout the day.

19

Call your pump company and tell them that you are considering going off the pump because the infusion sets are uncomfortable and ask them to send you samples of all their infusions sets. They should do this. Then you can try each one out and see what you like.

I used Comfort (aka Silhouette) infusion set for years because I had no idea that there were other options. Preferences on this vary a lot. So try them out and see what might work better for you.

20

Oops I just posted this on the previous page before I saw this comment :wink: