I don't think this caused quite such a stir over here as it did with people living with type 1 diabetes in the states, but if you'd like to know a bit more about the spongey thing that might make insulin on demand in realtime and the hoo hah it caused you should probably read this post:
http://typicaltype1.com/2013/03/11/the-biohub-brouhaha-of-2013-an-animated-retrospective/
It will make you smile.
5-10 years eh? Sounds quite familiar.
Monday, 11 March 2013
Thursday, 14 February 2013
Finding Balance in an Unbalanced World of Diabetes Support and Education
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| Nature often plays a delicate balance, like these two bugs holding on against the wind, behind these delicate, white blooms. It's a rainy, cold, and wet day, in Iowa. Fall is just around the corner. (September 11, 2008) |
Whenever I share any information, my hope is for you, the patient, to be able to make your OWN decisions -- and not make MY decisions as yours. I have this crazy idea that, when empowered with basic information, people will tailor their diabetes regimes to their own circumstances, and find balance. That I don't need to tell anyone what to do, and that since this is diabetes we're talking about, what has worked for me... will definitely, and not necessarily, work for you.
The problem is that diabetes is a dick. Diabetes doesn't play fair, and it doesn't give two shits about our feelings. It doesn't. It doesn't care that the news of the things it can do, can scare us, nor does it politely pass us over when we decide to close our eyes against it. So... sometimes, this harsh bit of reality might lead people to behave in one of two ways: either by becoming inflexible with their ideas of control, or by becoming completely lax in their control. Neither of these two ideas is good, even if one of them has much, much better numbers.
Inflexible Control
There's nothing wrong with having tight control. In fact, international diabetic guidelines call for patients with diabetes to aim for postprandial (after meal) numbers which are less than 140 mg/dL at 2 hours. For some time, I belonged to some communities with large numbers of internationals (people in any number of countries, outside the United States) -- and they consistently made their goals to be 140 or less, and never once did I ever see anyone complain about that, or try justify a much higher goal, or A1C, without some serious reasoning behind it. Sure, no one's perfect... but it IS the number they shoot for, so, it is the NORM for the world to shoot for those numbers This is, also, a number which even the American Association of Clinical Endocrinologists endorses. The American Diabetes Association is pretty much alone in their call for persons with diabetes to keep postprandial numbers at less than 180 mg/dL (but even they have this caveat under their goal guidelines: "More or less stringent glycemic goals may be appropriate for each individual.")
The fact is that the LIKELIHOOD for damage and/or complications caused by high blood sugar increases, in a correlated manner, the higher the blood glucose level is... and that correlation begins at 140 mg/dL. That's really scary. Not only that, but the risk for heart attacks increases by leaps and bounds the higher our A1Cs are. This is basically truth. This is not my opinion... it's not my way of calling people to go eat nothing but twigs all day, nor raw dieting, etc. IT IS THE UNVARNISHED TRUTH.
The problem is... some people use that truth to assume that everyone must tackle their diabetes in the same way. In fact, some persons are so disturbed by the potential damage of diabetes, that they push for normal, non diabetic numbers, near <90 mg/dL fasting, and <120 mg/dL postprandial. If one can pull that off, that's great. I do it all the time, and I shoot for it... But it's really not something that is ideal for everyone, nor should we expect everyone to easily overcome what we can. We are not all the same. And in fact, the likelihood for complications is also, very strongly determined by genetics. One can have great control, AND STILL GET COMPLICATIONS! So, if someone worked super hard to attain control (out of sheer fear), and they still got complications... what kind of setup for disappointment are we creating? Nothing is truly a guarantee. We do the best we can, and it doesn't really help to overfocus on the axe in the ceiling.
So here, you get people who may be well intentioned, and caring, and wanting to help others achieve control, pushing things like raw dieting, alkaline dieting, paleo dieting, and Atkins or Bernstein dieting, etc. This is not a basic truth a person with diabetes needs to learn. One's chosen diet plan is NOT a basic truth a person with diabetes needs to learn.
Persons with diabetes need to learn:
- What diabetes is -- a condition in which the body can't use glucose adequately, because the pancreas has either stopped producing enough insulin (which can be fatal), or has lost sensitivity to it (or sometimes both);
- What glucose is -- a type of sugar in which our bodies convert food, to use as fuel for energy. It is NOT the same as table sugar, nor is it exclusively derived from sweets. The body converts ALL foods we eat, from one degree to another, into glucose. 90-100% of carbohydrates, 50% of proteins, and around 10% of fats get converted into glucose. Table sugar and sweets are just another carbohydrate;
- What a glucose meter is -- a tool which allows us to measure our blood glucose, and how it is affected by the foods we eat (mostly the carbohydrates we eat), exercise, illness, medication, stress, temperature changes, hormonal changes, etc;
- What carbohydrate counting is -- a total, daily, number of carbohydrates we allow ourselves in our diets, in order to control blood glucose levels. We can adjust it in our meals (cut back on it, or add more) based on our glucose meter readings, and divide them up through the day, between three meals, and snacks. We are the most insulin resistant in the mornings, and the most receptive in the afternoons;
- What insulin is -- a hormone, which under normal circumstances, is produced by the body in order to help the body's cells and muscle tissues uptake glucose. Insulin takes up glucose found in our blood streams and uses some for immediate energy use, some for energy reserves (like when we need to wake up in the mornings), and some for storing as fat, etc. Insulin itself does not make one gain weight; overeating, and particularly overeating too many carbohydrates, can make one gain weight, because they a.) put too much glucose in the system, and in persons with type 2 diabetes, b.) may lead to too much insulin in the bloodstream;
- What insulin resistance is -- insulin resistance is a condition in which the body's cells are not able to bind with insulin, effectively, which would have allowed the entrance of glucose into cells for energy use. The body then finds itself with excess glucose floating around, so then the pancreas produces more insulin to try to take care of the matter. If the excess glucose is not taken care of, again, the pancreas will keep producing insulin. This creates a condition known as hyperinsulinemia -- or excess insulin in the blood stream, which can lead to weight gain, as a lot of that excess insulin tries to manage the situation best by storing that excess glucose as fat. One of insulin's functions as a hormone is to store glucose as fat, for potential energy stores.
- What the treatment alternatives are -- which can run the gamut from diet and exercise, to diet and exercise + oral medications, to diet and exercise + oral medications + insulin, to diet and exercise + insulin... but ALWAYS diet and exercise is a requirement for ALL types of diabetics. No exceptions.
Note -- insulin deficiency doesn't just make one
'lacking in energy,' it can also make one dead. It is a
serious condition, not to be taken lightly.
If a person KNOWS how all of these work, then they can decide what to eat. They don't need an extreme diet, "diabetic cookbook," or really, anything else. One counts carbohydrates, one tests pre and post prandially, and one learns from those measurements. "Oh, no! It looks like that plate of whole wheat pasta was NOT a good choice. Maybe I ought to cut back to 1 cup, and maybe add some broccoli, and some chicken on the side... or maybe I ought not eat any pasta, at all." Learning is what we do here. We are little scientists of our own planet. We colonize our OWN planets when we have information.
There are dangers when we tell other people what to eat, or get them to lower their glucose levels too quickly... it can sometimes lead to ketoacidosis, people often have heart conditions, allergies, particular health conditions, genetic high cholesterol issues, other dietetic restrictions they may need to follow in order to manage OTHER conditions... or they might simply be a growing kid, etc. It's truly not up to us to tell people how to eat -- only to give them the basic information so that they can make an informed choice. Honestly, that's a hell of a lot more than most doctors do, right now, for type 2 diabetics.
We blame type 2 diabetics a lot for not taking care of themselves, but we should be blaming many of those people's doctors, instead. If I blindly trusted my doctor, I'd be in no better position than most folks I know... who think they can just pop a pill, and forget about it.
But... unfortunately, a lot of people live this way. "Pop a pill, or take insulin, and forget about it."
Laxed Control
Some folks take on the attitude that it doesn't matter... That because nothing is guaranteed, then nothing matters, at all, so... "please stop showing me that I can get complications, because then why should I bother taking care of myself?" It can become quite hard to educate whoever might be new to the disease. And educate we MUST. We cannot avoid these parts of the disease education.
Diabetes is hard, but maybe we can become a bit self entitled, or spoiled, sometimes? Some persons have real critical conditions -- with no real hope of avoiding some awful things -- yet they still care for themselves. They do so because LIFE MATTERS; our families, and our loved ones MATTER... WE matter... and it's better to be informed, then to be caught off guard. Life just happens to all of us... and that's no reason to live in fear. In fact, I find it helps me live in peace. It just is what it is. Not to be morbid here, but do we honestly know of anyone who, barring some accidental event, is not going to get sick and die? It's just life.
I've also known persons with diabetes who have literally advised others to not bother taking care of themselves because they have spent all their teenage years being a 'bad diabetic,' and now they have none, or minimal complications, to show for it... so that people should have nothing to worry about. I kid you not. People who have advised others "Oh, I was pregnant and had horribly high A1Cs of like 13% or higher, and all my kids were born healthy, so don't worry about it." That is the height of irresponsibility. One person's GENETIC LUCK is not another person's health regime.
That doesn't stop there... it's the same culture who encourages parents to keep kids at A1Cs of 8% or higher, for no real reason. The reasons are mostly a whine -- assumptions of kids rebelling, some references to kid's biology being different which I have never seen any proof for, and wanting kids to be like everyone else.
Listen, don't get me wrong... everyone has the right to pick their A1C goals as they see fit. It's hard for me to comment on many of these issues because I don't have any kids... I don't really have a place of 'emotional authority' in order to appease most people, so that I can give my two cents. But... from what I know about childhood, and coming into one's own adulthood, learning moderation, and learning the discipline to control things like finances, cleanliness, diet, exercise, and emotions happens in childhood. Chronic illness would also fall under that. Obviously, not all children are the same... and some might have some real challenges at keeping a lowered A1C, but truthfully, those are potentially dangerous levels, with some real potential complications. If it's not a paramount necessity to risk it, why do so? Doctors tend to keep kids at high A1Cs, when the circumstances don't call for it, for the same reason they tend to keep type 2 diabetics from access to insulin, when the circumstances DO call for it -- FEAR OF LIABILITY. Fear that people are not smart enough to manage their own kids, without killing them with lows, or manage themselves, and lead healthy lives. There are plenty of kids with A1Cs at the 6% range, and doing just fine. Also, plenty of type 2 diabetics using insulin, and doing just fine.
To be honest, I don't trust anyone's judgement very much, but my own, with this disease, and my own research. I don't. So I respect when people use their OWN judgement, too. But -- they must have ALL the right information to make those judgement calls. And a doctor really needs to prove more to me, than his diploma, to gain my trust. Doctors are just archaic, more often than not, when it comes to diabetic care and knowledge. It's an embarrassment. Don't take my word for it... ask the average person with type 2 diabetes, on the street, or anywhere, what diabetes is, what drives glucose numbers up, and what carbohydrates are... and they WON'T KNOW. They won't know, and they'll somehow think they don't need to test, because some doctor or nurse will have told them it wasn't necessary. Seriously! "Just take a pill..." The IDF has called for persons with diabetes to TEST post meal numbers, as an imperative, to good control... and yet doctors and nurses are telling patients it doesn't matter.
Sometimes... people get burnt out, and I understand that. We all can get burnt out. But there are folks who just don't want to hear about control, AT ALL, nor for people in groups with a goal for education, to teach about the real consequences of diabetes, and the potential dangers of glucose mismanagement... And we just can't educate well, that way.
This IS a chronic health condition. This CAN kill you. This isn't a toe fungus. I'm sorry that it isn't! I wish I could just treat it with some Lamisil, and have it GO THE FUCK AWAY! But diabetes, not type 1 nor type 2, doesn't have a cure. The ugly little critter is just not going to go away, even if I do keep him well confined, and restricted.
These are things we need to impress upon people, sometimes. No, not oversaturate them constantly with it... but with the realities of living with it. Honestly, I just don't know how to candy coat complications, and death. Especially when I had to live through them, with my own father. I guess I'd rather offend many of you with some talk about complications, and the risk of death, then to have you live through what I had to live through.
----
So, when it comes to diabetes sharing, and education... I guess what I'm saying is this: a spoonful of sugar makes the medicine go down, but please, do take your medicine.
Give people balanced information, and give them the basics. People will learn what they need to do, and take a hold of their own lives. Some people will never learn, and we can't berate them -- they are responsible for their OWN lives. But, we can't hammer on again and again, with negative data... like alarmist conspiracy theorists. That's what Doctor Mercola does, and I hate that asshole.
Also, let's not settle for living like an ostrich, with our heads in the sand against the storms of reality. The negative data is there, and we must somehow learn from it, make sense of it, and help ourselves find a meaningful, balanced place, where we embrace our lives with diabetes. If I get a complication, c'est la vie. I'll spray paint my mandatory diabetic shoes in neon, hot pink.
Diabetes can suck it.
Friday, 8 February 2013
The Moldy Cupcake Awards: Yahoo! Shine Alarmist Crap
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| Copyright © 2010 Julie King / Gleeful Things. All Rights Reserved. |
*Re-edited* Now with 30% more gripe.
So, today, a new diabetes alarmist article is making it's rounds on Yahoo! Shine, earning it a Moldy Cupcake Award. The article makes some tremendously sweeping generalizations, about some supposed research from France, showing that diet soda causes diabetes, and that high consumption of sugar causes diabetes.
#1 Where is the link for this research? I'd like to read it for myself, thank you. I don't need someone else interpreting it for me. As readers, and advocates, we deserve to be able to double check your sources.
#2. Sugar, nor high consumption of sugar, causes diabetes. It never has, and it never will. One has to have a genetic predisposition, and weight gain, to perhaps trigger the illness, but no consumption of any specific foods causes diabetes. Sugar is no different than any other carbohydrate. High fructose corn syrup, however, is a different matter. Why don't you do us all a favor, and tackle that, for a change?
#3. "Furthermore, aspartame, one of the main artificial sweeteners used today, causes an increase in glycaemia and consequently a rise in the insulin level in comparison to that produced by sucrose." WHERE ARE YOUR SOURCES? Aspartame DOES NOT raise blood glucose. Honestly, I don't know how you dare report that. That is irresponsible journalism. Aspartame does NOT raise blood glucose. It has no calories, and no nutritional value like sugar -- it does NOT raise blood glucose. Some of us who already have diabetes would be in a lot of trouble if it did. Where's your evidence? You have NONE.
#4. The only thing diet sodas have been LOOSELY shown to do is increase the craving for sweet things, in some people, who then go on to overeat, and then could go on to gain a lot of weight -- which if they have the genetic predisposition for getting diabetes -- could lead them to develop the disease. This is not extensive research, nor is it unequivocal. So no. It is an extreme grasping at straws to say that diet soda causes weight gain, much less diabetes. Don't believe me? Ask WebMD!
#5 Why not report on how overconsumption of soda (diet or otherwise) can cause a person to not give its body enough of the proper hydration it needs? How it might make the body 'swell' from dehydration, if one gets severely dehydrated? Oh, here's an idea, why not instead promote moderation??? You fail to see, Yahoo! Shine, that people who are diagnosed with such a life altering, and deadly disease, as diabetes, need transitional foods, and foods that given them a semblance of normalcy. Why? BECAUSE IT IS DAMN HARD, THAT'S WHY! Don't like soda, don't drink it. But don't LIE about it to get readership.
#6 "Type 2 diabetes—which can be controlled by diet and exercise rather than a daily insulin injection ... " Why can't you people ever, at least, talk to a doctor, advocate, or some expert when it comes to describing diabetes? Do you now how simplistic, and moronic, this statement is??? Type 2 diabetes is NOT the same for every individual, and if they are on insulin, it is often NOT because they don't want to follow a good diet and exercise regimen. For many, many people, diet and exercise, alone, are NOT an option! Diabetes is a progressive condition in which treatments often need to be altered or changed, in order to keep up with a failing pancreas... and that includes insulin! And newsflash, I wish it were just one simple daily insulin injection! Obviously, you don't really know much about how a pancreas works, and the amount of insulin (basal, and bolus) that a body needs. No, no, but that's okay. Don't let your ignorance hit you in the ass on your way to misinforming people.
Cite your sources, or don't write an article at all. PROOF, or it didn't happen.
Oh, and one more thing... if aspartame is good enough for Joslin, it's good enough for me. So when it comes to diabetes, SHUT UP, Yahoo! Shine. You don't know jack. Don't make things worse for persons with diabetes than they already are. Shame on you.
Thursday, 31 January 2013
The Einstein Principle
"I had it coming"... "Pride comes before a fall"... "Sod's Law"... "I brought it on myself"...
So hands up who thinks they know what has happened just as I posted something about how well things have been going recently. Right. So that's pretty everyone with diabetes reading this, every parent of a child with D, or anyone who lives with someone 'pancreatically challenged' then. Thought so. OK you can put your hands down now. Don't want your arms getting tired.
Yup. As you would all expect, immediately after I allowed myself a little glimmer of diabetic self-satisfaction the other day, things have well and truly gone 'off the rails'. In no small part self inflicted (a family birthday celebration with not quite enough self-control on my part). Partly stupidity - I forgot to press the final 'confirm' to administer a lunchtime bolus, cue stratospheric BG mid afternoon. A suspected big fat tubing bubble overnight (I know!). And also partly a little basal-tweaking needed as my half marathon training has started to kick in. What was looking to be a pretty decent set of figures for the month are suddenly looking decidedly ropey.
It's like that moment when [insert the name of your favourite sports star or team here] has put in all the hard work throughout the [season/game] and looks on course for glorious victory only to throw it all away with an errant putt on the 18th green, a missed double 16, by spinning out on the corner, conceding a sloppy goal in the 89th minute, or double-faulting the set away with a catastrophic loss of concentration.
It hasn't helped that I had a letter today from the fine folks at the mobile eye screening service today to say that they had spotted some 'background changes' in my eyes again. They said that once before a few years back, but I have to confess I far prefer the letters since then where they had been saying, "Nope, nothing to see here matey". No treatment needed, just another 12 month check. But not ideal news in a week where on-target readings have been a bit thin on the ground.
And of course (crassly stupid mistakes aside) those days when the wind is behind me and my pancreas-impersonating-guesses all come together with effortless perfection rarely 'feel' that different to the days when every reading seems determined to skip over that ever-so narrow target range that we all try to aim for. Days when meter and pump are constantly warbling warnings of imminent doom for being too high or too low. This is particularly the case when, like now, my basal profile needs a little tweaking. Tried and tested approaches, ratios and meal choices lose all reliability. Corrections and doses either seem to disappear entirely or hit home like a sledgehammer. And all the time I'm trying to just do the 'normal' things that I know work.
Albert Einstein is often quoted as having said that:
"Insanity is doing the same thing over and over again and expecting different results."
Well I don't know about insanity, but that's a pretty darned good description of living with type 1 diabetes.
Saturday, 26 January 2013
Bubble, bubble, tubing trouble
Looking at my stats it seems Artoo has been having a bit of a run of form recently. Not without a wobble here and there obviously (let's not be silly) but certainly a decent punt at things on the whole, and far fewer eye watering levels in the 20s than in any of the months since I started on an insulin pump (which were never really part of my MDI experience). According to the funky monthly reports on my current BG logging app of choice (the excellent mySugr - 'making diabetes suck slightly less') my purple patch seems to date back to October. I even seemed to manage Christmas with fewer Quality Street induced gaffes than I would normally expect. Generally average BG in the high 6's low 7's (108-126), with an SD around the mid 2's (36). This makes me happy.
Aside from me taking a *very* long time to get used to the whole pumping business (Artoo was very patient with me) I believe there are a couple of changes which have helped me, so I'm posting this insufferably smug blog entry just in case there are any frustrated insulin pumpers who stumble upon it that are putting in all the effort but not seeing the results they are hoping for.
Firstly, September was the time that I switched infusion sets. I'd been having a fair few failures for some months, but only in amongst a majority of set changes that worked perfectly. At the time it was less obvious, but looking back, a readings/recoveries from mid 20s almost every month were messing things up for me. If you are getting set failures/site issues more than a couple of times a year it could well be worth asking your clinic/DSN/endo what alternative lengths and types of infusion sets are available to you. I've not had *one* site failure in the past four months - and aside from the lack of eye-frying levels, it also makes me feel a lot better about the whole business of diabetes day to day (as hard as I try not to part of me always takes these out of range disasters as a sort of personal failure).
Secondly, and my initial reason for writing this post, I think I have cracked the 'bubbles in the tubing' problem. Maybe not 100%, but pretty darned close. I'm not sure how common this is, but throughout my first year on a pump I was occasionally victim of a 'phantom bubble of doom'™. I'd fill the reservoir with room-temperature insulin as advised, having first moved the plunger up and down to lubricate the inside of the reservoir. I'd flick and jiggle for all I was worth until I was absolutely sure that there were no bubbles in the insulin. Fit the reservoir to the pump, and prime with the pump vertical, tapping all the while to ensure that any rogue bubble-ettes got expelled in the priming, and then connect everything up happy in the knowledge that I had achieved the perfect bubble-free set change. BUT. The next day, look at the reservoir and BAM, there it was a big, fat, lurking, bubble of doom. Ready and waiting to find its way into the tubing at some inconvenient moment and then effectively deprive me of basal for an hour or two. Or mess up a meal bolus. Or both. I do try to check my tubing a few times a day but these suckers are hard to spot. And just as frustrating as the high BGs they caused - was not knowing where they were coming from! I was as sure as I can be that they were not there when I changed the set. They just seemed to be emerging out of nowhere with an evil glint in their eye overnight.
I did discover a suggestion on You Tube, which I won't link here as it was a complete disaster for me. The technique (described as something like 'degassing the reservoir') involved creating a fairly strong vacuum in the insulin vial by repeatedly drawing air out of it until you could do no more. Do not try this! My experience is that reservoirs are just not designed to operate under that kind of pressure. On more than one occasion (and I only tried it about 3 times!) the o-rings failed and insulin began to leak 'behind' the plunger while the reservoir was in use. Complete BG chaos. But it did get me thinking...
If you too suffer from occasional 'phantom bubbles of doom' - here's what seems to be working for me. When you draw up the insulin into the reservoir it is usual to first inject air into the vial, equivalent to the insulin you are about to withdraw, to equalise the pressure. Instead of this only inject half of the air into the vial. Additionally you should make sure that you inject the air with the vial downward, then invert the whole caboodle to draw up the full insulin amount. Then flick and jiggle any bubbles that have crept in as normal. Disconnect the reservoir first, to allow the air pressure in the vial to normalise again. It seems that the very slight vacuum created is not enough to worry the o-rings, but is sufficient to make the insulin less 'aerated' in the reservoir. Or something. Anyhow, it seems to be working!
Obviously... Disclaimer, disclaimer. Not medical advice. Consult a qualified person. Don't try this at home. Read the documentation supplied with your pump. Simply reading this blog post may void your warranty etc etc.
If you have any top tips that you have discovered for yourself - please share them below :)
Aside from me taking a *very* long time to get used to the whole pumping business (Artoo was very patient with me) I believe there are a couple of changes which have helped me, so I'm posting this insufferably smug blog entry just in case there are any frustrated insulin pumpers who stumble upon it that are putting in all the effort but not seeing the results they are hoping for.
Firstly, September was the time that I switched infusion sets. I'd been having a fair few failures for some months, but only in amongst a majority of set changes that worked perfectly. At the time it was less obvious, but looking back, a readings/recoveries from mid 20s almost every month were messing things up for me. If you are getting set failures/site issues more than a couple of times a year it could well be worth asking your clinic/DSN/endo what alternative lengths and types of infusion sets are available to you. I've not had *one* site failure in the past four months - and aside from the lack of eye-frying levels, it also makes me feel a lot better about the whole business of diabetes day to day (as hard as I try not to part of me always takes these out of range disasters as a sort of personal failure).
Secondly, and my initial reason for writing this post, I think I have cracked the 'bubbles in the tubing' problem. Maybe not 100%, but pretty darned close. I'm not sure how common this is, but throughout my first year on a pump I was occasionally victim of a 'phantom bubble of doom'™. I'd fill the reservoir with room-temperature insulin as advised, having first moved the plunger up and down to lubricate the inside of the reservoir. I'd flick and jiggle for all I was worth until I was absolutely sure that there were no bubbles in the insulin. Fit the reservoir to the pump, and prime with the pump vertical, tapping all the while to ensure that any rogue bubble-ettes got expelled in the priming, and then connect everything up happy in the knowledge that I had achieved the perfect bubble-free set change. BUT. The next day, look at the reservoir and BAM, there it was a big, fat, lurking, bubble of doom. Ready and waiting to find its way into the tubing at some inconvenient moment and then effectively deprive me of basal for an hour or two. Or mess up a meal bolus. Or both. I do try to check my tubing a few times a day but these suckers are hard to spot. And just as frustrating as the high BGs they caused - was not knowing where they were coming from! I was as sure as I can be that they were not there when I changed the set. They just seemed to be emerging out of nowhere with an evil glint in their eye overnight.
I did discover a suggestion on You Tube, which I won't link here as it was a complete disaster for me. The technique (described as something like 'degassing the reservoir') involved creating a fairly strong vacuum in the insulin vial by repeatedly drawing air out of it until you could do no more. Do not try this! My experience is that reservoirs are just not designed to operate under that kind of pressure. On more than one occasion (and I only tried it about 3 times!) the o-rings failed and insulin began to leak 'behind' the plunger while the reservoir was in use. Complete BG chaos. But it did get me thinking...
If you too suffer from occasional 'phantom bubbles of doom' - here's what seems to be working for me. When you draw up the insulin into the reservoir it is usual to first inject air into the vial, equivalent to the insulin you are about to withdraw, to equalise the pressure. Instead of this only inject half of the air into the vial. Additionally you should make sure that you inject the air with the vial downward, then invert the whole caboodle to draw up the full insulin amount. Then flick and jiggle any bubbles that have crept in as normal. Disconnect the reservoir first, to allow the air pressure in the vial to normalise again. It seems that the very slight vacuum created is not enough to worry the o-rings, but is sufficient to make the insulin less 'aerated' in the reservoir. Or something. Anyhow, it seems to be working!
Obviously... Disclaimer, disclaimer. Not medical advice. Consult a qualified person. Don't try this at home. Read the documentation supplied with your pump. Simply reading this blog post may void your warranty etc etc.
If you have any top tips that you have discovered for yourself - please share them below :)
Saturday, 22 December 2012
Ho ho ho-peful
Artoo and I began our little adventure just over a year ago. It has been as steep a learning curve as anyone ever suggested it might be. At times it has felt like I was newly diagnosed all over again, and despite 20ish years of experience with injections, there were weeks when that knowledge seemed to count for almost nothing.
A year ago I noted that in hindsight, perhaps beginning to completely change insulin delivery method immediately before one of the most challenging and notoriously chaotic times if the year foodwise might seem a little foolhardy. But in the current challenging financial climate it would be a brave man who would turn down the offer of NHS funding for an insulin pump without a very good reason.
Last Christmas was, if I'm honest, a bit of a mess BG-wise. Much as I stand by the general assertion among people living with diabetes that there are two days (Christmas and birthdays) on which and any carbs eaten don't count, the perfectionist in me delights in giving myself a kicking whenever dodgy results appear. Even when (and perhaps especially if) I'm sort of expecting them. I didn't get myself into any serious bother last December, but it was certainly not my finest hour. Since the Summer, and especially since changing the sets I use to Silhouettes (with occasional Quickset), Artoo seems to have really got into his stride. I had a pleasant surprise with an A1c improvement at my annual review, and if anything averages and SD have been slightly better since (with the occasional lapse obviously!).
I'm not naive enough to expect a Christmas entirely without an errant reading (or 10), but my trust in Artoo's judgement and general ability to accurately correct my mistakes has never been higher. As long as I can weather the basal-tweaking turbulence when the lack of gym visits kicks-in I am hopeful that I might be able to enjoy a few treats here and there over the festive period (along with the inevitable selection of wildly non-standard meals) and still keep a relatively decent hold of things. I can but hope.
Thanks to everyone who has visited and commented on our blog this year. It has been an eventful and exciting one in many ways and it has been lovely to share it with you all.
Have a brilliant Christmas and here's to unexpectedly good results this festive season and rock-steady BGs for 2013 all round.
A year ago I noted that in hindsight, perhaps beginning to completely change insulin delivery method immediately before one of the most challenging and notoriously chaotic times if the year foodwise might seem a little foolhardy. But in the current challenging financial climate it would be a brave man who would turn down the offer of NHS funding for an insulin pump without a very good reason.
Last Christmas was, if I'm honest, a bit of a mess BG-wise. Much as I stand by the general assertion among people living with diabetes that there are two days (Christmas and birthdays) on which and any carbs eaten don't count, the perfectionist in me delights in giving myself a kicking whenever dodgy results appear. Even when (and perhaps especially if) I'm sort of expecting them. I didn't get myself into any serious bother last December, but it was certainly not my finest hour. Since the Summer, and especially since changing the sets I use to Silhouettes (with occasional Quickset), Artoo seems to have really got into his stride. I had a pleasant surprise with an A1c improvement at my annual review, and if anything averages and SD have been slightly better since (with the occasional lapse obviously!).
I'm not naive enough to expect a Christmas entirely without an errant reading (or 10), but my trust in Artoo's judgement and general ability to accurately correct my mistakes has never been higher. As long as I can weather the basal-tweaking turbulence when the lack of gym visits kicks-in I am hopeful that I might be able to enjoy a few treats here and there over the festive period (along with the inevitable selection of wildly non-standard meals) and still keep a relatively decent hold of things. I can but hope.
Thanks to everyone who has visited and commented on our blog this year. It has been an eventful and exciting one in many ways and it has been lovely to share it with you all.
Have a brilliant Christmas and here's to unexpectedly good results this festive season and rock-steady BGs for 2013 all round.
Wednesday, 19 December 2012
Unusual suspects : age at diagnosis
A short while ago I was musing about one of the questions which form part of the scope of my little side project. It got me thinking, and in order to have a slim chance of having something to say when the subject eventually comes up for discussion I began to wonder just how old people generally are when they are diagnosed with various types of diabetes.
In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.
There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.
First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.
While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.
So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!
Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!
Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:
So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.
It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.
In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.
There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.
First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.
While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.
So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!
Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!
Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:
| Type 1 | Type 2 | Total | ||
| Number | 158 | 63 | 221 | |
| Average Dx Age | 18 | 45 | ||
| Dx uncertainty/change | 12 | |||
| Avg Age at initial Dx if changed | 35 | |||
| By age group | Type 1 | Type 2 | T1 % | T2 % |
| <= 17 | 90 | 0 | 57% | 0% |
| 18-34 | 47 | 7 | 30% | 15% |
| 35-44 | 14 | 24 | 9% | 38% |
| 45-64 | 5 | 29 | 3% | 38% |
| 65+ | 2 | 3 | 1% | 5% |
So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.
It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.
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