Monday, 14 May 2012

Diabetic Humble Pie

It was Wednesday at 2 AM, and I couldn't sleep. I stared at the walls intently as if they held hidden messages for me; my own hieroglyphs to decipher. Suddenly, just like an omen in a bad movie, the soft light that usually bathes the bedroom's walls was gone; complete blackness engulfed everything. Five minutes later, there was light, alright... Lightning and thunder made their explosive way into the picture. The stuff usually soothes, and helps me sleep, but that wasn't going to be the case on this morning. This morning I had to rise early, and walk to work... and it was going to be a very interesting, and very wet, walk to work.

And I can't begin to tell you just how interesting. 

Let's just say I completely underestimated the situation, and thought it was just... well... an annoying moment of rain, and some fading thunder. At 4 am, though, let's just also say that some things are better left unseen. 

Most of the homes on my city's main avenue are small, and unimpressive. Not a blight, by any means, but just average homes that probably serve as 'first homes' to many newlyweds, or even some retired folks. They don't really have much in the way of yards, trees, or shrubbery, but I got to see a few fallen branches here and there, and that's common out here in Iowa during some of our Spring storms. No biggie. 

But then, you hit a slight bend up the road... and the homes become bigger, 'stately', and with sprawling large front lawns, gardens, and trees. You might even see a posh car or two, parked on a driveway; testament to how much someone, somewhere, makes. And this is where the horror began. 

Have you ever seen a a tree trunk that's, maybe, a few feet wide, in diameter? Yes? Now, have you ever seen it BENT IN HALF, like the bending of a simple tulip stem; like a Twizzler... Like it was made of rubber? Well, at this point in my walk, very MANY of the trees were in this state.

I got quite scared. The city sirens never rang that morning, and no warnings or advisories were in effect for my county. But I know quite well a few of you KNOW what this represents. Unless the Jolly Green Giant's bratty son was out and about, or Godzilla, for that matter... the only two things I know that can do this to such large trees are tornadoes, and hurricanes. And we don't have hurricanes up in the northern Midwest. 

I really didn't know if this was still happening in the vicinity... I sure didn't hear anything in the way of a "freight train" noise. But by then, I was closer to work than to home, so I tried to finish the journey as quickly as possible, and get out of harm's way. Stupid? Maybe. Later, in the papers, experts were looking into whether a tornado 'potentially' touched down in Ames. Well, you sure could've fooled me. :/ 

I was very scared, and when I get scared... I tend to get angry at the impotence of the situation. Scared of being alone, scared I have nothing to rely on to save my own behind, and very angry. I don't know why... like what could I do? Slap the sky? I guess I just want life to happen smoothly, sometimes, and not scare the crap out of me. Not force me into confrontations, or situations I don't want. I JUST WANTED TO DO WHAT I HAD PLANNED - GET TO WORK! 

But life seldom cares what we want, and we have to roll with it...

So we come to Friday, at the second job. I worked an 11-5 pm shift, and I'd been sick with a stomach virus for a few days. Really, foolish or not, I didn't have much in my stomach at that moment; I was just too scared I couldn't keep any of it down. 

Lunch rush starts at this Mexican restaurant, and I'm quickly into the groove of things, making order after order after order. It's okay...! I'm in my element! Things are going awesome... 

And then, without notice, the floor was made of lava, and I was in a movie, and people were watching me. And I was making those burritos... on a compartment, atop a roller coaster ride, and trying to hold on soooo hard to the railing. I think I thought the burritos were the railing, at one point. Everything was funny, and sooo not funny, at the same time. I got scared, and very angry.

I wanted to stop, but there was no one else there. I'm pretty knew, so people don't really know much about what I need, or don't need, and frankly... I only work a few hours, part time. I guess I foolishly thought I could get away with it. I *knew* that I was having a quite sudden, and quite low, LOW. But I couldn't stop.

"I can finish this lunch rush," I say to myself... I can. By the time rush was done, I'm sure some of my folding, and wrapping, looked as mangled as those trees on my main avenue. I was so sick feeling, and so scared... Like a person drowning, and their head rising in and out of the water. Where the hell are the jellybeans? I quickly announced I'm going on break -- whether people like it or not -- and NO ONE refused. They must've seen something in my eyes, and wisened up. 

Funny, the place is typically crawling in ho-hos, twinkies, and jelly beans... and not a damn piece of sugar was in sight. 

Luckily, I ate through 3 pieces of candy I had in my pocket (too scared to go down the greasy, steep steps to the basement, and find my purse, and get the meter and the glucose tabs), and a cup of regular soda... 30 minutes later things seemed to improve. My break was only 15. 

I will have to ask if I can keep things upstairs -- we can't really keep personal things, nor food, in the work areas. But it's going to have to be... an uncomfortable conversation. I just don't like to bring it up.

ALL I WANTED WAS TO DO MY JOB, AND FINISH, AND GO HOME. 

In the end, I took a detour through Alice's Wonderland of Diabetic Crap, and finished with a terrible headache... and NOT from the magic mushrooms. :/ 

I hate Diabetes. *&^%#! Diabetes.

Lesson: We can't exactly plan for every situation, in life. Who the heck knows when a tornado's going to come in, and rip through your lunch rush, at work... BUT we must be willing to reach out to others, and identify safe beacons along the way. Don't hurt yourself because you want to be tough, and stubborn, and stupid. Just don't. It's so not worth it... 

"One order of diabetic humble pie, please. For here." 
















Tuesday, 8 May 2012

Face-off: MDI vs Pump


A couple of people who are considering going on an insulin pump were asking how I was getting on, how I was finding it and whether I thought it had made any difference. 

An interesting question a little over 6 months into the experience. 

Pump win(?): Fear of attachment
The first thing to say is that the nagging worries I still had about attachment when I wrote a few weeks after starting on a pump have long gone. I know some people feel at one with their robot pancreas almost immediately, but it took me a good few months before I reached the stage where I rarely thought about being hooked up to Artoo, and even when I did, it didn't worry me. Things like getting changed, where the sense of inconvenience lingered, no longer strike me as irritating. If you have just started on a pump, and the attachment still frustrates you, hang in there. Not everyone gets used to it in a few days. Allow yourself time to adapt to the new 'normal'. Wearing and using Artoo is now second nature. No problem with sleeping either. 

Hugely unexpected pump win: Attachment
I think this bears repeating from my '2 month' post, partly because it was something I really didn't see coming. There have been many times since starting on a pump that being attached to Artoo 24/7 has given me back a feeling of spontaneity. Do you remember spontaneity? I'd pretty much forgotten about it myself too. That ability to just stop and have lunch there because you fancy it, rather than having to go back home because you weren't expecting to be out that long and didn't bring your kit. There have also been *no* times since November when we've had to stop the car at the end of the street, and run back to fetch my pencil case.

Pump win: Basal patterns
A properly flexible basal pattern was one of my main motivations to switch to a pump. Looking back, while on MDI my early morning 'fasting' reading of the day was more erratic than I realised at the time. Sometimes too high, sometimes too low. Only in a decent range say, between 3.9mmol/L (70mg/dl) and 7.5 (135), less than half the time (45% to be exact). Truth be known it's still wobblier than I'd like, but these days I get a decent first reading on two out of three days. That's a much cheerier start to the day for everyone at the breakfast table.

Pump win: Delivery options
I was invited to an evening arranged by Medtronic in March where pumps and pump therapy were discussed. It surprised me how many people had been on a pump for years but had never tried out different bolus patterns or temporary basal rates. If you are new to a pump I'd encourage you to get stuck in straight away. TBRs, dual and square wave boluses have more than lived up to my expectations. Many situations, like gardening and vacuuming which refused to play nicely for me on MDI have been more or less tamed by Artoo. I don't get it right all the time, but have a little 'cheat sheet' of notes for what seemed to work before to use as a basis for whatever I'm doing and I have avoided many many spikes and/or hypos since November.

MDI win: Infusion site failures
On the plus side set changes have become much easier and more automatic. They are a little more time consuming than a simple injection, but you do know roughly when they are due and can bring that forward/push that back slightly if it would come at an inconvenient time. The whole push-button dosing thing is so much quicker and easier than faffing about with a pen that my feeling is that I have a net gain of time spent/inconvenience endured dealing with diabetic rigmarole.

But. (and it's a biggie)...

I have had sites go wrong already. I still watch every set change carefully to make sure they have 'taken' properly. I had almost stopped being so paranoid, but two or three failures in quick succession have put me on my guard again. At least two cannulas have kinked on or after insertion so that insulin wasn't being infused properly. Not serious enough to get a 'low delivery' warning, but enough to cause a rise in BG levels. I had another site seemed to 'go off' at about 1.5 days. It had been fine, but suddenly stopped working as expected. I am putting these down to site issues because corrections did not behave properly, but as soon as the site was changed I was back on an even keel. I've also caught a big fat bubble in the tubing on at least two occasions when I've put Artoo back on after a shower/gym session - which makes me wonder if some odd but short lived rises in BG might be down to Artoo delivering 'bubble' rather than basal for an hour or two on other days. I check carefully every time I fill a reservoir and flick and fiddle until I am as sure as I can be that I have got all the bubbles out, but nevertheless I can still sometimes see a bubble in the reservoir at the next set change. These are not problems that you ever have with MDI. Even if you hit a dodgy site that is only going to be one out of the day's several injections. With Artoo all my eggs are in one basket. And sometimes the handle falls off the basket. I have had one-off levels on a pump higher than I've had for years on MDI, perhaps the highest since I was first diagnosed. And I've also tested positive for ketones since November - again not something I am used to. In all I've probably had to swap out maybe six sites since November. As a percentage of the total number of insertions it's not disastrous. but it's not ideal either.

MDI win: Injection site availability
Another part of this is the available site locations. I was never very adventurous on MDI, but I had far more area to play with in terms of a quick injection than is suitable to have something fixed to it for several days. I'm currently using sides and back for sites to give my abdomen a rest but have to be careful to find a spot with enough 'flesh' and some places end up being slightly uncomfortable when you lean on them/sit on them/risk getting them knocked out by waistband. In theory I could use my thighs, but there's not a lot of 'spare covering' there and most of the usable area seems to be right underneath my jeans pockets which I'm forever fishing stuff out of. I worry I'd just pull the site out when trying to get hold of my my keys.

But what of the results so far?
It's never very easy for me to spot how things are going from day to day. A couple of good (or bad) days on the trot and it can feel like I'm some sort of perpetual Diabetes Superhero/Catastrophe. Sometimes it feels like I've been having a problem for months, but looking back just a week or two and it becomes clear that it has only been a matter of days. 

So I dug back through my records and picked some results to compare from three periods. Some old paper records from around the time we started writing this blog, some records towards the end of my time with the Accu-Chek Expert and some more recent ones with Artoo. I pulled 60 days of results to try to reduce the impact of a dodgy few weeks. I avoided holidays/Christmas or other challenging times of year and tried to pick a couple of 'normal' months for each. I knew things have been getting better for me in recent years, but I've not really compared and contrasted in this way before. 

Testing frequency was roughly even in each case (between 7 and 8 times a day) and are made up of a mixture of waking, pre meal, post meal and bedtime tests. 

The first thing that surprised me was how much improvement I had been able to make on my own with MDI, even before the help of the Expert. Due to an, ahem, administrative/back-up error I don't have a full 60 days immediately pre-Expert to compare, but even so, before Artoo the number of highs and lows were substantially improved.

Hypos - below 3.9 (70)
Old MDI was the worst with 20% of readings, the Expert reduced this to 10% of readings and Artoo has made a small improvement taking this down to 8.7% - clearly Artoo and I still have work to do here.

Hypos - below 3 (54)
The old MDI records really don't do well here, with almost half of all hypos coming in below the 3 (54) mark. Compared to what I'm used to in recent years it made uncomfortable viewing. Both the Expert and Artoo fare much better with 2.4% and 2% of all readings coming in at that level. Both with the Expert and with Artoo, none of these hypos have been 'nasties'. I can't remember the last time I had a really bad one it was so many years ago. I've been functioning, spotted them and able to treat them all myself. That may not have been the case with the old MDI records.

Highs - above 10 (180)
The same pattern of worse, slightly better, better again repeats here. Old MDI shows 19% of readings over 10, with the Expert that falls to 16% and reduces to 13% with Artoos assistance.

Highs - above 13 (234)
This is where Artoo really shines at the moment. Despite having subjected me to an occasional stratospheric BG with a dodgy set, in the 60 days of data Artoo only allowed 0.04% of readings to stray over 13. The Expert does surprisingly badly here with 6% while even old chaotic-style MDI scrapes in with 5%.

Averages and SD
While averages can hide a multitude of unpleasant detail, I think that here they do seem to suggest positive progression. The old MDI average was 6.8 (122) with an SD of 3.3 (59), the Expert improves this with a slightly higher average 7.2 (130) but reduced SD of 3.0 (54). Artoo though trumps them all with the joint lowest average 6.8 (122) and a significantly lower SD of 2.4 (43).

So is it worth it?
YES! Absolutely. The ways in which Artoo has made my diabetic life easier to control, more spontaneous and simpler to get along with far outweigh the remaining niggles I have about infusion sites. Is it like being non-diabetic? No of course not. Actually I have to watch myself not to feel downhearted if I don't have perfect levels all the time because some mad part of my brain thinks that in theory this ought to be possible now. Well unfortunately Diabetes is still incredibly annoying and has lost none of its ability to throw out the rulebook and move the goalposts for weeks at a time. I don't suppose it ever will.

I have an HbA1c coming up in the next few months. It will be interesting to see if there is an improvement - my first post-pump A1c showed an 0.5% increase and I'm hoping I might be able to match my previous MDI result but with fewer highs and lows into the bargain.

We shall see.

UPDATE: Regarding set failures - I wrote this some months later. Set changes

Saturday, 5 May 2012

Blue Cinco de Mayo...


In Loving Memory...
Gone too soon, nine years ago, today.

Gone, but not forgotten... 
Just one loving memory away.

Hector Rafael Collazo Santos
(September 11, 1938 - May 5th, 2003)

He may have lost his chapter with Type 2 Diabetes,
but the WAR continues with me.

I will keep on fighting, dad.
I will NOT give up.

Rest in Peace




Thursday, 3 May 2012

When Will I Die From Type 2 Diabetes?

"I do what I have to do, so that I can do what I want to do."
Life is not a simple exercise for me. While it just seems to come naturally to some, it's just not so, for me. Having a positive state of mind is a continuous choice I have to make, and it is a continuous decision to stop self destructive thoughts in their tracks, and choose to believe the positive mantras that might seem cheesy, or ludicrous to me.

I don't really know why I am like this... and I could psycho-analyze it to death, but I'm not sure how helpful that would be. I'm pretty sure that some of the hurdles I've faced (especially in my childhood) have helped me develop a somewhat dim view of the world. Things like childhood obesity, a grim personal appearance (thanks to undiagnosed PCOS), constant exhaustion and mood swings (thanks to undiagnosed Hypothyroidism), uninvested parents and a lack of personal development, etc.

I felt so alone most of my childhood, and so inadequate, that I spent it trying to pursue instant gratification. In my teen years, eating and TV became my sole companions and comforts, while my family was mostly off in their own world. It's still like this today, you know. I don't get social phone calls from family, nor so much as a card on a birthday, or a holiday... and quite frankly, I don't remember the last time I got anything at all in the mail, from them, or even a social phone call. You can see why a child would try to drown itself with 'love' in the form of whatever one came across -- be it food, or TV, or what have you. Pick your poison.

When one is swimming in loneliness, illness induced mood swings, life induced anxiety, and self loathing... it is extremely hard to have self control of any kind. Whether it be with your refrigerator, or with your checkbook, or whatever brings you immediate release. What's worse is that when you don't have deadlines or commitments of any kind, you can put off desperately needed changes, for as long as possible and tell yourself that 'tomorrow, you will start;' but when someone tells you that you have NO choice, that it's the hour zero and you need to buckle down, or else... your life turns into a shiny, red button. Do not press the shiny red button, they say... You must guard yourself to never press the shiny red button. Everyone's anticipating, and policing you. Everyone knows.

History Eraser Button



If the video doesn't show, follow the link above.

This is what life is like for many of my fellow type 2 diabetics, right now... A shiny red button. It's easy to understand how one gets to that kind of place, and ever soooo hard to help someone get out of that place, see the light, and understand that although life may be smacking us with its behind (like the announcer guy on this Ren and Stimpy video), that we have a choice. We indeed have a choice, and our lives don't automatically go down the drain... Our destinies are not planned for us. We MAKE our own futures; we write them today.

Someone I admire profoundly, once said to me: "Lizmari, you are no one's victim." 

But it's so comforting to believe that I am; that I am life's victim, that I have no choices, that I am like a small boat, with no sails, and no paddles... at the mercy of life's waves. That I am being held hostage at the mercy of a big, shiny red button, awaiting to erase history; MY HISTORY. Or at least, in my warped sense of self I like to think it is... "Woe is me..."

Why? Because it's PAINFUL to not be anyone's victim. It takes MUSCLE, and exercising your discipline muscle is just as painful as stretching your calves. Ouch. 

... But I am not anyone's victim. I AM NOT, and neither are you. 

Listen to me, friend. You who decided to google "When will I die from Type 2 Diabetes?" and suddenly chanced upon my blog: You are not a tiny raft, alone at sea. You are a MASSIVE ship, and you can take charge of your course. You can choose to stir your ship into the icebergs, you can choose to press the shiny red buttons of your life, every day... Or you can choose to tell diabetes to buzz off.
"Hey, diabetes... GET LOST. You may place hurdles in my life, but you will NOT take me. Not today. TODAY WILL NOT BE THE DAY. I am NOT your victim. You are NOT my master. I AM, and I am allowed to BE, and you do NOT get to tell me who I am, what I am, and when I get to leave." 
I have my own shiny, red buttons... and I understand. Believe me, I do... 

But you have choices... And while you may decide to throw in the towel, let me remind you (or perhaps inform you), that Type 2 Diabetes =/= death. YOU have the power to let it equal LIFE. A life reborn, a life re-defined, a life EMBRACED. 

Embrace life, WITH diabetes. It may take courage to not be a victim... but I promise you, if you do it, you will NOT be disappointed. You will be OKAY. You will not just survive, but you will THRIVE. You can do this thing... Life awaits you! 

I promise. 

Will you take the challenge?






Wednesday, 25 April 2012

Meter accuracy - the narrow window

I've been stewing over the question of meter (in)accuracy over the last few weeks after my experiences with the iBGStar. Possibly because throughout much of April my levels have been a bit wobbly which often puts me in a grumpy frame of mind as Stacey at www.portablepancreasgirl.com noticed. Not helped by the report today that suggest 80% of the massive NHS diabetes budget goes on treating (largely avoidable) complications.

In our fight to avoid complications our 'window on the world' of how our choices are affecting our bodies are blood glucose (BG) meters. BG meters currently have to meet accuracy criteria set by the International Standards Organisation in order to pass muster. This is a good thing.

But...

According to ISO15197 the required level of accuracy for BG meters is +/-20% against lab results 95% of the time. So the very best they need to aim for is that a lab reading of 7.0mmol/L (126) would show as somewhere between 5.6 (100) and 8.4 (151). And 5 times out of 100 it could be much worse. In other words testing at 5.6 and then 8.4 just 5 minutes apart using the same meter with the same pot of strips (or even seconds apart from the same drop of blood!) would pass the International Standards Organisation criteria for accuracy.

Similarly under the requirements 3.2 (58) and 4.8 (86) could be identical readings from a lab test of 4.0 (72). But 3.2 and 4.8 are not the same as far as anyone trying to manage their diabetes is concerned. One is 'reach for the jelly babies' time, the other is 'nothing to see here', while the actual result was 'better keep an eye on that'.

With modern diabetes management techniques we have the potential to manage our condition with a level of accuracy which should guard against complications. But the snazziest insulin pump and whooshiest rapid analogue insulins are being let down by a sloppy data feed.

To play it safe perhaps I should adjust my pre-meal targets to take account of potentially errant readings. So lets see... with a 20% buffer at either end that gives me a target 4.8 - 5.6 (86-100). Aim for that narrow a window? Hmmmm, perhaps not. Unless I want to drive myself mad.

Fortunately most meters far exceed the required level of accuracy most of the time. But as for the 'official' requirements... Good enough? No I don’t think so really.

Tuesday, 24 April 2012

Are Diabetics Angry...?


(See Also: Diabetes and Anger -- Is there a Deeper Connection?

This angry diabetic has been really bewildered for the past few weeks with many new and personal challenges...  As we know, life's problems do not stop at diabetes, or any other chronic illness, nor do they care if we're having to juggle other things. In fact, in the storm of life... sometimes when it rains, it just pours. (I need to buy a raincoat.)

So, I thought... why not take a little time to address a common, and often overlooked, issue with diabetes? Anger. In the past few weeks, my blog has registered many, many Google searches for "anger and diabetes," "do diabetics suffer from anger," "do diabetics need anger management," etc. I fear many of these folks might be family members really wanting to understand, and care for their loved ones... or maybe folks just wanting to understand themselves a little better.

Before I get a little further into the discussion, I want to add that while the emotions we experience through the ups and downs of illness, and life, are perfectly normal... this blog post is in NO WAY a justification for aggression, violence, or abuse. It might be an EXPLANATION of a course of events, but in the end... we are responsible for our own selves, and how we manage our health, and our emotions.

Got that? Okay... :)

Diabetes is a PERVASIVE disease...

Now, in order to make some of kind of sense of the emotions a person with diabetes might feel, we need to understand one thing: Diabetes is a PERVASIVE life change. It is one of the most pervasive life changes an 'afflicted' person will ever have to face. While it may not seem as such in the beginning stages (especially for type 2, and often during a "honeymoon phase" for a type 1), with time, an individual will soon become painfully aware of just how MUCH diabetes will demand of them.

Diabetes demands that we (and often our loved ones) learn a LOT of information in a short amount of time, and often more than many medical professionals; that we completely change how we view our eating habits, and what we consider healthy according to the whims and demands of a little electronic gadget called a 'glucose meter;' that we throw away the information we once thought made SENSE, for a new, and obscure world which we merely go about feeling, through the grace and support of others who have been there before us; that we are on alert to protect ourselves from the harm of careless outsiders, or clueless third parties. It demands that we learn to 'forecast' how meals will affect us, depending on their level of carbohydrates, fiber, protein, and fat, and sometimes... algebra, and the phases of the moon! :) And yes... just to throw a nice wrench in it, diabetes often demands FAMILY UNITY and outside support. Diabetes... is a THIEF of spontaneity. It demands you plan out almost every moment of your life.

Let's face it, if most of us got into a relationship with someone who was like this, we'd call them CONTROLLING... And most of us can't handle change very well, let alone pervasive change. A social network like Facebook changes how some things look, and feel, and millions of people get up in arms, and feel imprisoned! Living in harmony with a controlling, and demanding disease like diabetes, is NOT an easy feat for the weak-hearted, or for those who fly off the seat of their pants. It is HARD work; often 24/7 work. It is like chess; one always needs to think 2 or 3, or 4 moves ahead. If you snooze... you lose.

Diabetes makes us feel judged... 

Being diagnosed with diabetes, in itself, can be anger inducing. We often feel like we have failed somehow. Whether it's type 1, or type 2, folks often feel a big burden of guilt over past habits or parenting, or perceived flaws (however erroneous those might be.) Often, folks who were diagnosed with type 2 diabetes may have been fighting, or struggling with weight and eating habits for years, before feeling like they were given a 'death' sentence for 'failing' to make the grade at these tasks. To top it off, few medical professionals discuss how BIG the role of our genetic make up is when it comes to diagnosis, and how even folks who are thin, or otherwise in relatively good health, can end up with a diabetes diagnosis.

Instead, diabetes is portrayed as the disease of the obese and inactive, and not simply a disease in which our immune systems are more sensitive to unhealthful triggers, thanks to our genetic make up. Many things like alcohol, smoking, other medications and illnesses, as well as pollutants or pesticides, may trigger a diabetes diagnosis. Some of those triggers, we may work at reducing their influence; some, we may not. One works at REDUCING the risk of getting diabetes, but the use of the word "prevention" is a potentially judgment inducing misnomer.

Diabetes is poorly understood... 

Diabetes doesn't just bring with it a lot of self blame... It often brings with it the blame of outsiders who poorly understand this disease. This is, in part, the fault of our current medical professionals, and in part, the fault of our media who is looking to market to, and cash in, on a 'growing' population.

One would think that for such a deadly disease, there would be many prepared and able medical professionals, and certainly... there are some great ones out there. However, the amount of uneducated, misguided, and often, dangerous medical professionals out there, is staggering. Many patients, particularly type 2s, are left out in the dark... with little information as to what they have, and how to proceed. They are often kept from access to specialists, educators, testing tools, and insulin... so managing this disease, and learning how to do so in what one would think should be a safe environment, are often HUGE, and frustrating, hurdles. Many folks end up erroneously thinking this is a disease of avoiding sweets -- which it is not -- and are left not understanding why they can't make strides, and worse, being judged and labeled as "noncompliant."

The amount of new information we are learning about diabetes, every day, is far outpacing the amount of continuous diabetic education many medical professionals are receiving. This leaves us with a world of antiquated guidelines, and outdated diabetic organizations... leaving many patients out there, clueless, and confused.

Diabetics are poorly understood... 

It follows that because diabetes is such a pervasive disease, and such a complicated and misunderstood disease, that diabetics themselves would be misunderstood.

Many folks can understand the need to keep a home free of elements that might provoke a deadly allergy, in a family member, such as nuts... Few folks can understand what it's like to have to completely re-structure a life after a disease, and require the support of the entire family unit to achieve it. Often, family members or friends, might think that diabetes is just the person's problem, and that they don't need to contribute or support in any way. They don't want us to "cramp" their style, or to have to change on our account, in any way. Often, for example, if a person with diabetes is the cook in the home, they end up making different meals for their family, or may even get little acknowledgement for their desire to have a healthier pantry in the home.

Feelings of frustration, anger or resentment, are often met with snide comments of disbelief: "What's the big deal? You can eat that...," "Just diet and exercise and your diabetes will go away...," "So? Just stop eating sugar...," "I don't see why you feel so sick, you must be faking...," "You brought this on yourself, anyway... It's your fault... I'm not the one with diabetes...," "Please don't bore me with your disease...," "At least it's not cancer...," etc...

For the diabetic, it's often a lonely world, especially if one does not have a support group to vent in. Our struggles often go unacknowledged, and we can be viewed as drama queens, or hypochondriacs 'obsessed' with our disease. It is a 'nuisance' for others to change, especially if that change is INDIRECTLY related to them. Diabetics will often feel left out of activities involving food, particularly if the items are challenging and no longer doable for them.

Diabetes brings scam artists and opportunists... 

Often, our loved ones who DO try to help fall prey to media misinformation, scams, and opportunists. This is not surprising, since there is so little accurate information out there, it presents an information vacuum for predators and those who want ratings and readership, and a trap for folks who want hope, and are not getting the right education and attention from their medical teams. We live in a society that wants quick answers, and quick remedies, and quick blame... and is prone to gullibility. Unfortunately, scammers want a quick buck, too... and many "doctors" have long abandoned their Hippocratic oath, over worship of the all-mighty dollar. (If it's a TV doctor, or a doctor with complaints or cures about EVERYTHING, and an opportunity to sell you an expensive supplement or product to fix it, or a book to cure it... He is NOT a true doctor. If every doctor or 'specialist' in the article you just read looks like a super model of some sort, they are most likely NOT 'nationally renowned.')

Unfortunately, actual medical professionals have been guilty of misleading regular folks with promises of gastric bypass cures, and diet cures, as well. Telling folks if they just lost weight, they wouldn't have diabetes anymore... or treating them like school children who need pass and fail grades. Recently, a famous 'study' hawked the 'curative' properties of gastric bypass, but what NO ONE noted was that the company sponsoring and paying for the study was the medical company PROFITING from the gastric bypasses. (Yes, I am sure cigarette companies would just LOVE to tell me how healthy cigarettes are for me, if left to their OWN designed studies.)

Now, a well educated diabetic, constantly on their toes about misinformation can CATCH these tricks full of smoke and mirrors, but a relative who is not in the middle of the fray, or a well meaning friend or person, is not as apt to pay attention, and more likely to assume or rely on the 'goodness' of the medical establishment. I mean, why not? This crazy study was published EVERYWHERE; even the New York Times.

Opportunistic journalists often feed on opportunistic headlines from opportunistic profit seeking groups, or doctors, and this creates a world of hurt, trouble, and often anger, for many persons with diabetes.

Diabetes is PERVASIVE in ignorance... 

I wish diabetes was JUST a misunderstood disease; the problem is people will make decisions BASED on that ignorance, and misinformation.

Doctors choose to not educate themselves because it's a disease that can be 'avoided' and it's the person's fault; insurance companies choose to not cover services, supplies and medicines, and testing tools, because it's a disease that could have been 'avoided,' and it's the person's fault; employers choose to not respect diabetic's needs because they see them as 'making stuff up' because according to many poor doctors, it's 'no big deal,' and it could have been 'avoided,' and it's the person's fault... and it keeps snowballing and snowballing.

You get the idea.

For diabetics, proving themselves as worthy patients, employees, friends, and family members, is often a daunting task. NO ONE today would dare go accusing someone with AIDS of giving themselves a disease, and chastise them; however, this is often the bread and butter of diabetes... Especially, type 2 diabetes and small children with type 1 whose parents often get accused of having given them 'too much sugar' as babies. I mean, who thinks that? Do you know any moms out there who filled their baby's bottles with pixie dust sticks? I don't...

Diabetes BRINGS mood swings...

Anger, depression, loneliness, you name it. When our blood glucose levels get either too high, or too low, our moods WILL swing back and forth. Mood swings can vary between just general grouchiness, irritability, to violence (especially, during low blood sugars, when we may have little control over who we are.)

It's bad enough dealing with this scenario, but often friends just make us feel 'belittled' when they ask "Can you check your blood sugar?," if we share our emotions, or our frustrations. I admit, it's sometimes not so easy to tell... but if you're in the middle of a rational argument with someone, do not stop to ask them this; it's quite the same as asking a woman if she's on her period. I don't condone violence, but I can't say violence WON'T happen if you happen to reduce someone's honest views or emotions to a blood glucose episode.

How can I help? 

Be an active "reader", and consider your friend or loved one with diabetes, as an open book; that is, listen more, and talk less. Read more, and assume less. Seek to learn, and seek ways in which you can be of help. Instead of suggesting actual tasks to 'police' your diabetic's behavior, you may ask an open ended question, such as "Is there anything I can help you with?" Or, "I have noticed you struggle with x, y, and z... is there anything I can do to make that easier?"

We can help our diabetics by "dividing and conquering" tasks, like bringing back up glucose supplies, or calling ahead to find out what meals will be served at events, or friends' places. We can even help by making a favorite diabetic's dish to bring. I don't know why, but these small things that take away my 'spontaneity,' are the ones that peeve me the most. If I have someone else as a back up for my forgetful mind, I don't have to feel so vulnerable at those times.

Invest your life alongside your diabetic friend or loved one's life -- I mean, you want them around for a lot longer, right? Why not go to their support groups with, or their diabetes educator sessions...? Ask thoughtful questions that do not put a person on the spot; you can ask about what a hypoglycemic event is, and feels like, when the person is NOT in the middle of one, for example.

Embrace a HEALTHIER life. Do not treat the diabetic's new life changes like they are a death sentence, but as a wake up call to the entire family that they need to be a bit more conscientious of what they eat, portion, and manage. If they are related to you by blood, it might benefit you ENORMOUSLY to follow their eating regimen and lifestyle, and get used to it now... while you don't have the strong pressure of complications looming over your head.

Finally, if your loved one, or friend, is greatly struggling with uncontrolled anger, and depression, remind them that it is OKAY to feel that way, and that it is OKAY to need some help sometimes with the overwhelming burden of managing a controlling, and demanding illness. Diabetes is as much a  psyco-social disease, as it is a physical disease, and it WILL require outside support, and often require therapy.

This blog post is by no means exhaustive, but I hope to have at least shed SOME light for many of you on how being a diabetic can change one's world view, and bring with it, many unwanted frustrations, resentment, and often anger. Much of that anger we can grow from, and overcome, and some of it will forever linger... as is the nature of the disease, and the world we must face as diabetics.

Do you have questions, or topics you would like for me to cover? Feel free to let me know. :)

Monday, 16 April 2012

The diabetic half hour

Just having to rattle this one down. I've got several other 'proper' posts jostling in my head, but this one has just emerged and rudely pushed its way to the front...

Is it just me or do many other diabetics seem to spend an interminable amout of time just waiting around? I'm not talking those charming hours spent in the cosy nooks of a doctor's surgery or the peace and tranquility of a clinic waiting room - I just mean the day to day business of pretending to be a pancreas. The waits I am talking about always seem to last about 'another half an hour'.

Wake up, test BG, bolus, pour coffee. Look at watch and think, "Better wait about half an hour for that insulin to realise it's meant to be doing something useful before I take the rash action of eating something."

Lunchtime, test BG, bolus, see above...

48 minutes after lunch. Hmmmm I wonder if I guessed that dollop of whatever right. Bit early yet, better wait about half an hour before testing to allow for the dose/food to get going.

Oops, got that wrong. 9.something... If I walk to the shops that'll sort that out. Back from the shops. Wonder if that worked. Better leave it about half an hour for that sort of low-level exercise to have any effect I suppose.

Evening meal (inexplicably spared the need for a pre-meal half hour wait). Look at watch, 56 minutes since finishing. Bit early yet. Better leave it about half an hour before seeing how things are going.

Bedtime. Dual wave finished some time ago but there are still a fair few units (and some takeaway) doing their thing. Better leave it a while before turning in. There... was that long enough? Ah no... that was only 27 minutes, better leave it about another half an hour.

I'm sure if I had all those back and added them together I'd have about twice as many hours in the day! And half an hour is not quite enough time to do any one thing, but slightly too long to do nothing. It's a time period where it's easy to get distracted and forget what you were supposed to be doing (waiting to eat after bolusing is a nightmare for this).

And a lot can happen in half an hour, diabetically speaking. You can be waiting to give it long enough to check and all the while your BGs can be rocketing skyward. 30 minutes of rapid climb meaning it'll take even longer to resolve.

Case in point yesterday: I had tested to find a couple of low level dips in the morning where I'd underestimated the level of activity and not sufficiently reduced basal. In the afternoon I feared the same was happening again, but rather than testing I just topped up here and there with a sip of Lucozade or a fruit pastille. Before evening meal I was an entirely self-inflicted 12.2 (220). Not ideal. In an attempt to speed the return to better levels I left Jane washing up (sorry about that) and went for a brisk 40 minute walk. Once back I waited for things to settle (about half an hour, of course) but then found that rather than improving things I was up to a wince-inducing 24.8 (446). Frustratingly I rarely feel any symptoms with quick rises into kidney-frying territory so I had waited none-the-wiser while my liver had decided that my BG was far too high to be walking about and what I really needed was an additional surge of glucose. Great. Thanks for that.

On the other hand I had changed set just before evening meal so maybe it was nothing to do with the walk and it was just a set failure?

A full 5 unit correction administered there was nothing to do but wait and see if thigs got better or worse. Ready yet? Nope, not long enough. Another half hour should do it... (I always seem at least twice as eager for a correction to start working as it is able to start reducing BGs).

Thankfully I did come down overnight, and very smoothly too. Artoo earning back my trust with a 6.5 (117) at 2am, followed by another 6.5 (117) on waking this morning.

Yet another day when I would *love* the immediacy of feedback that a Continuous Glucose Monitor offers. Ah well, without a lottery-win (unlikely as we don't do it) that isn't going to happen with the current pricing structure.