Diabetes and Frustration


(Chelsea) #1

Hi everyone, I wanted to write a blog because I figure reaching out to a community helps when you feel like there is no where else to turn or no one else truly understands. I have lived with diabetes for 24 years and I am now 26 and getting married next year. I have met a wonderful man who is supportive and encouraging and does everything he can to further understand this disease and to help me manage it. It’s frustrating at times when experiencing a high BG due to pump failure or site failure. It’s hard because when I see a high BG I correct it but then it becomes a waiting game to see if it works and it’s scary, sometimes leaving me in a weeping mess, because you go through the steps of changing a pump site and have to wait again. I worry because of what this might mean in the future. I’ve talked with my doctor and they are doing everything they can, but soemtimes the solution is only temporary. These feelings keep going around and around and of course stress doesn’t help, I know this; I figures if I reached out to a community I might find support from others who share similar feelings and have had similar experiences that maybe we can share about those experiences and learn something new to try. I’m open to ideas. Thanks for hearing me out. God bless!


(joe) #4

@cnmcwhirt hi Chelsea,

I’ve had t1 for 40 years now, and it can tend to get harder as you get older but life tends that way too.

My Niece went through a time of many many site failures - she was using a plastic cannula type set, in her case, a qiick-set 90 degree from Medtronic.

how often does this happen to you? are you using scarred sites? what kind of infusion set do you use? (straight/angled - metal or plastic) many people have issues with plastic cannula - but they make metal infusion sets too and it could make a difference for you. I recommended the “Sure T” to my niece and it was all it took.

yes coming down from a high from a set failure is a PIA (no pun intended) because your pump thinks you have a ton of insulin on board, so your correcting a 300 and your pump already thinks you have insulin so it “suggests” 0.1 units! I can’t tell you exactly what to do but for me, it typically involves a manual bolus or a syringe shot. You are supposed to correct, wait an hour, and if you see credible movement in your blood sugar you can have some assurance that whatever you did worked.

don’t forget that “fast” insulin isn’t all that fast, and that it can last for 4 hours. There is a big chance you can “stack” your bolus and end up very low. If I need to come down fast, I go for a 10-15 minute walk about 20 minutes after a bolus. be careful if you try this because the extra movement can make you drop very fast.

congrats on your upcoming marriage! best of luck! Please be aware that there are major life stressors in changing jobs, moving, and getting married. stress does bad things for my control.

hope you are doing ok please check back in!


(Bill) #5

Hi, Chelsea.

Joe’s post brought me back to topic - I had keyed in on the word “frustration.” Sorry.

I think Joe’s response was right on track. It’s no fun when an infusion set, site, or pump fails to work as you expect. And high BG readings are not what you want to see, but they happen despite our best intentions.

Joe and Dennis have commented about “stacking” boluses. Scary stuff. You might read some of those posts (if you haven’t already).

Yes, stress makes diabetes management more difficult at times. You are a better judge of how stress affects you. If it doesn’t treat you well, then limit as much stress as you feel you need to.

Hang in there! And best of luck with the wedding!

Bill


(joe) #6

@BillHavins Hi Bill, you didn’t need to delete those responses - the information on the psychological aspect of this disease is very important and can help people searching the web site. Please reconsider, or consider making those replies a separate topic so the material stays on this site! We appreciate your thoughtful input. -Joe


(Bill) #7

Joe,

I’ll put it up as a separate post. I felt like it was kinda’ rude to miss Chelsea’s point. Thank you for responding directly to her concern; good job!

Thanks for your thoughts!

Bill


(Chelsea) #8

Hi Bill,

Thanks for the input. The biggest struggle I come across is infusion sites. Sometimes they work perfectly, others it starts failing right from the start. I’ve been watching for patterns, but there is a lot of inconsitencies. My diet doesn’t change and my worry is that I am going to overuse the areas that are accessible causing resisitence. Even though I am rotating sites, I am still concerned. I moniter what I eat and I exercise (at least try to lol, when my BG level is not low).

In an aforementioned post you mentioned writing things down, do you have any methods that have worked for you, or options that I can try. I’m open to new ideas. My biggest frustration comes from pump sites not working. Sometimes I put it on the back of my arm and it works seamlessly, but when I alternate it to the opposite arm my levels start to spike and wont stabalize regardless of how much I bolus. I haven’t had issues in the past, but it’s become something of a hit-or-miss. Any advise you can offer would be greatly appreciated. Thank you for all your input.


(Dennis J. Dacey, PwD) #9

Hi Chelsea @cnmcwhirt, observing patterns and writing things down can be a big help - and there are certain things, such as repeated failure of an infusion site, that never leave your memory.
Many years ago I “labeled” or names my various infusion sites - now I know that #8, #6, #4 are completely out of bounds - 8 always bleeds and 4 and 6 no longer absorb the insulin. Depending on site, I now use four different cannula lengths 6mm, 9mm, 13mm and 17mm.
I use a calendar that I print from Outlook and keep with my pump supply [travel] kit on which I record site #, time, cannula length, etc.; I use the header and footer on the page to remind me of different things - a body map, cannula priming, etc. Sounds like a lot of work, but really simple. I also have a small 3x5 notebook in which I enter BG, Carbs, and dose - especially corrections; I leave the notebook where my wife can see it so she doesn’t need to be concerned about searching around to find me passed out again.


(Bill) #10

Chelsea,

I think Dennis has detailed one way to do things. And, as you’ll notice, he appears to use different-sized cannulae depending on site(?).

There are some “pumpers” who have to do what Dennis does to get things to work well (or so it would appear). And there are some people who, for one reason or another, just can’t use a pump.

Because of my very limited body fat I can only use pediatric cannulae. And I only use one size. But I have a single infusion site that I have to avoid (it’s a 2” X 2” area about my left flank).

I wonder if finding a knowledgeable and patient physician/diabetes educator is the key to solving your challenge. It’s all about site and “site perfusion,” or so it would seem. Maybe Dennis can share a name or two with you.

Good luck!

Bill


(Chelsea) #11

Hi Bill,

I’m needingyour advise again. I’m still experiencing inexplicable highs alongside that a considerable amount of frustration, which admitedly does not help the help the situation I realize. I wear an insulin pump and have worn one for over a decade and I have just switched over to a new brand. Is there any advise you can offer in terms of recording BG, you mentioned previously it took you years to figure it all out. I admit I don’t think I’ve been coping very well handling high BGs, and I’ve tried to be patient through it all, but I haven’t been very successful. It’s definately been a roller coaster. You’re right when you said it sends you a curve ball. Due to the frequent highs it’s been giving soemthing of a panic attack. I’m open to any suggestions you have to offer, I would greatly appreciate your help.

Thanks again for all your help.

-Chelsea


(Bill) #12

Chelsea,

The way you describe your frustration it sounds like it is due to “something’s not working.” (Now that’s a brilliant statement, huh?) That’s “easier” to resolve than the “I hate everything about this” kind of frustration.

As you know, I can’t offer specific “medical” advice, but I can offer some things to consider with your health care provider.

Let’s go back to the basics. The “preferred” method of insulin therapy is a combination of long-acting insulin to provide a “base” level of insulin around-the-clock, and boluses of short-acting insulin to cover meals. Some years ago this combination might include a morning and evening dose of “Ultralente” (a long-acting insulin), and a dose of “Regular” insulin with each meal. The morning dose of Ultralente was often about two times the size of the evening dose (to prevent nighttime hypoglycemia, and for other reasons). In recent years many people with diabetes are using “Lantus” for their long-acting insulin, and “Humalog” for their short-acting insulin. The Lantus is sometimes split into a morning and evening dose, just like Ultralente.

Remember, the idea behind the above is to ensure that insulin is available around the clock, and that increases in blood glucose from meals are adequately managed. Pretty simple. The very same strategy is used with an insulin pump - the effect of “basals” is like that of long-acting insulin, and the effect of “boluses” is like that of short-acting insulin. But there’s always a wrinkle to these things, right? Yes, there is with this, too.

Our bodies produce hormones at various times of the day/week/month/year in response to various internal and external stimuli. One of the most troublesome for many people is a tremendous load of corticosteroid that is dumped into our systems when we awaken each day. This hormone can dramatically raise glucose levels. So how do you deal with it? You might take a large bolus of insulin to “knock it down,” but that large bolus is liable to send you into a hypoglycemic episode when the effects of the hormone disappear around 10:30am. If you are taking insulin via syringes you really don’t have much choice. But, and this is the beauty of an insulin pump, with the insulin pump you can set a basal that covers the hormone increase (from about 7:00 to 10:30 for me) and then backs down to a “normal” daytime level. In my own case my overnight basal is .375 U/hr, and it jumps to .875 U/hr at 7:00am. I have it back off to .675 U/hr at 11:00am.

Here’s the other part of my morning formula - I take a .8 U bolus (that’s 8/10ths of a Unit) with breakfast, that’s all. I eat the same thing for breakfast almost every day (same amount and type of carbs that is) and, by managing the morning hormone issue with my basal, a very modest bolus manages breakfast.

Here’s the point of the above paragraphs. A person has to discover the basals they need (i.e., time, amount, and duration) or they will never be able to moderate the ups-and-downs of their blood glucose levels. Once you get your basals right, managing meals with boluses becomes pretty easy to do. For me, my “general” formula for bolusing is 1 Unit per 30 grams of carbohydrate. And, if my blood sugar demonstrates an unexpected rise, I “pull it down” using a formula of 1 Unit per 100 mg/dl of BG over my target. But I never stack boluses (thanks for reminding us all of this, Dennis)!

Another big concern in all of this is “clogged cannulae.” I’ll address this later today - right now I have a date with a shovel in my wife’s flower bed (or so she is telling me).

Hope this helps!

Bill


(Dennis J. Dacey, PwD) #13

Hi Chelsea @cnmcwhirt, you / we can always count on Bill @BillHavins to provide excellent information and sage advice. Thanks Bill. I would like to add a verification technique that I’ve used since I’ve had a pump; when I got my first pump the endo said something like … you know this stuff better than I, so just figure out what your basals should be and probably continue your same bolus ratios. I had been carb counting and what is now called MDI since around 1980.
Here is my suggestion; after you enter new basal rates in your pump [I have several rates over the course of the day] validate their accuracy by fasting. For instance for my evening and overnight, I eat a ‘normal’ supper and bolus for the food and then don’t eat or bolus until lunchtime the next day. I check my BGL every few hours and don’t make a correction [food or insulin] unless I go lower than or higher than MY safe range. If I need to make a correction, I call off the validation and [try to] use my “corrections” to adjust my basals. You can validate your other basal rates in similar fashion.
Now just wondering how successful Bill was managing split dose ultralente with each dose having 36 hour duration and unpredictable peaks; 60 years ago for me a single dose was a nightmare.


(Bill) #14

Dennis,

Re: Ultralente in a “split dose” - after about the third day it was much better than Lente in “split doses” (combined with Regular insulin to cover meals). But, and it’s a BIG but, My wife and I both had to be extra vigilant about hypoglycemia. Believe it or not, I found Lantus to be much, much more difficult to tolerate - when it would “unload” on me (i.e., throw me into a hypoglycemic episode) the hypoglycemia could last for an hour(?) or what seemed like more. And that gets us back to Chelsea’s topic.

People do sometimes demonstrate a variable response to the effects of insulin. One summer when I was working at Camp Sweeney in Gainesville, Texas (the first summer camp for youngsters with T1D), we had a camper who demonstrated quite a “resistance” to insulin. I don’t think she weighed 80 pounds, and her morning dose was 80 Units of NPH insulin. But every few days her “resistance” would disappear and, suddenly, she would have 80 Units of insulin “roaring” through her small body. The word among the staff was, “If [camper] tells you she is ‘going low,’ send a runner for the physician and immediately give her 30 grams of glucose gel.” When the physician arrived he/she would often administer an ampule of glucose intravenously. And so it went.

The point is, each and every one of us will have a very individualized response to the effects of insulin. It can range from [camper’s] response, above, with its wild-and-crazy (deadly?) swings, to the “almost” sedate pattern that I am exhibiting now that I am an older “geezer” (it hasn’t always been this way). So, as @Dennis noted, above, it is important for you (and your health care provider) to figure out how you are responding to insulin, and, then, develop a pattern of basals and boluses that help you feel like you have greater influence over “your grizzly bear” (your T1D). (I’m giving grizzly bears a bad name, huh? They’re not half as bad as T1D can seem to be…)

@Dennis offered his strategy for developing his “starter” basals. I did something similar after I realized that my pump manufacturer’s representative was not in a position to advise me. And, like Dennis, my physician said, “You know more about this than I do…” In my experience you “sneak up” on your “ideal” basals; you always start with basals that are not likely to throw you into a hypoglycemic episode. I now use five different basals, and I have to change them at least four times per year. It’s okay. The basals are the key. Let me repeat, “The basals are the key!” Boluses are easy (simple carbs to Units ratios).

Now, back to clogged cannulae. Some years ago I was asked to evaluate a man who was exhibiting a change in his gait pattern (he was shuffling his feet instead of demonstrating a “fluid” pattern of walking). His mentation speed was also dramatically reduced (his responses to questions was very slow). And his wife reported with some embarrassment that he had become incontinent of urine. I immediately asked if he had ever had a shunt (a cannula) implanted in his brain to treat hydrocephalus and his wife responded, “No, but he did have a head injury many years before we married.” In a minute the man said, “Yes. I have a shunt.” To make a long story short, his shunt had shifted position and had lodged against the wall of his ventricle (one of the several fluid-filled spaces in the brain). His shunt/cannula was “clogged” and fluid was building in his brain; the increased pressure in his brain was causing his symptoms. A neurosurgeon revised the man’s shunt and his symptoms resolved.

The above is a rather dramatic example of a clogged cannula. The cannulae that we use with our insulin pumps can also become clogged and, then, delivery of insulin can be reduced. As we insert infusion sets we are hoping to embed the ends of the cannulae in subcutaneous tissue. This is the layer of our skin that allows for the best “perfusion” and “absorption” of insulin. If the end of a cannula ends up in scar tissue, absorption may be significantly reduced - blood glucose levels will increase. I sometimes wonder if the subcutaneous fascia (a connective tissue membrane that separates the subcutaneous layer of the skin from muscles) can also prevent adequate insulin perfusion/absorption if the cannula tip is inserted too deep. Elsewhere @Dennis has posted information about the several cannulae he has had to use depending on the infusion site he is using. So far I have been able to use the same “pediatric” cannulae in all of my infusion sites.

So, you might consider working with your health care provider if you are concerned that your cannulae are getting clogged or that some other issue is affecting your absorption of insulin. It is sometimes a matter of cannula type and/or insertion technique. If that’s part of the issue, try to get it resolved as quickly as you can.

Finally, the early morning awakening corticosteroid release can sometimes be accompanied by anxiety. If that’s part of the issue, let us know. There are ways to manage it.

Cheers!

Bill


(Bill) #15

Chelsea @cnmcwhirt

In your more recent post you asked about record keeping; sorry I failed to address the issue in the posts, above.

What you want to gather is information about the effect of your basals and the effects of your boluses on meals that are eaten. And in that information you are watching for one or more patterns. If I was doing this, I would choose how many grams of carbohydrates I wanted in each meal for a day; say 45 grams at breakfast, 60 grams at lunch, and 60 at supper. I’d also figure in a small snack before bed (no more than 15 grams or so). If needed, I would add in snacks of 15 grams mid-morning, and 15 grams mid-afternoon. That’s about what I eat each day (not much). I would also plan to follow that carbohydrate load for about five days in a row. I’d list that in my chart (an Excel spreadsheet, for example).

Next, I’d “chart” my basals and my boluses. I’d keep them consistent for five days. (This is very similar to what @Dennis offered, above). Then I would check my blood glucose four times a day, say at breakfast, 10:00 am, 2:30 pm, and 8:00 pm. I’d also check my blood glucose just before I went to bed, so that’s five times per day. I’d post those numbers to my Excel spreadsheet.

After five days I’d then be able to look at the chart and identify patterns. Let’s say I saw that my blood glucose measures before going to bed looked pretty good (<160mg/dl), but my morning blood glucose measures were just too high (>240mg/dl). That would indicate a need to raise my overnight basal; I could tell that because the only insulin in my system overnight would be that basal (I would not have an “active” bolus at work). So, I could confidently say my problem was with my overnight basal and I’d raise it, but I wouldn’t raise it much. Until you really know how insulin works in your system you don’t dare make big changes on your own.

Now, the fact that my blood glucose measures looked pretty good before going to bed would tell me I was not having a pump or infusion site problem. Why would I conclude that? Because the blood glucose measures told me things were working at bedtime - if you have a pump/infusion site problem none of your blood glucose measures will look good.

So, what if my 2:30 pm BG measures were all too high? Which one would I change, my afternoon basal or my bolus at lunch? If I was carefully counting carbs (yes, I still do that), and if I was always using the same carbs-to-Units-of-insulin bolus ratio, if I just had one “after meal” BG looking bad across the chart I’d know it was my basal that needed to be raised. Why? If the ratio works with other meals it should handle lunch, too. But something’s off in this scenario and, more than likely it’s my afternoon basal.

Now, if all my measures are too high I need to work with my physician to figure out what’s going on - either I’m not getting enough insulin, “something” has changed for me medically, or my pump/infusion site is not working.

As I looked for patterns I’d identify those blood glucose measures that looked “bad” at the same time almost every day. I would choose to change either one basal or one bolus at a time, and give the change a try for at least three days before I changed it again or chose to change a different basal/bolus. You have to give changes “time to work” before you make other changes. Otherwise you just end up riding a roller coaster.

When you’re first learning to make decisions about T1D management the above spreadsheet of numbers can serve as a very useful “map” or “plan” for making adjustments. Without those numbers in front of your eyes you never have a sense of where you’re going as you manage.

I hope this makes sense. Ask us questions; we’re here to help.

Bill