Trunkles at Large

Doug Burns is the reigning Mr. Universe.

Doug Burns is a type 1 diabetic.

Doug Burns is also in the midst of a serious miscarriage of justice!

In a nutshell, Mr. Burns had a hypoglycaemic episode in a theatre. The security staff thought he was drunk and kicked him out. They also called the cops, who arrived on the scene and attempted to subdue Mr. Burns who resisted and was busted. Read the full story here.

When it was found out that he was in a hypo you would think that would be an end to the matter, but no, he has been busted and the case is going to court!

Everyone of us who has had a hypo knows that our brains don’t work rationally in that state. The medical profession are well aware of this too. So why the hell has he been arraigned before a court? If he had epilepsy and had hit an officer during a grand mal would he be appearing before a court? One would hope not, but, given what is happening to Mr. Burns, it wouldn’t surprise me in the least!

I can only hope that the case is dismissed and that the police/DA are given a good rap over the knuckles by the judge for crass stupidity. The police and DA should also give Mr. Burns a very public apology.

If, however, Mr. Burns is found guilty then a SERIOUS miscarriage of justice will have occurred. I also worry for the rest of us who suffer from diseases that screw with our brains. Are we all going to get busted because we are ill?

In Bernard’s comment to this post he mentions Amy Tenderich’s suggestion to call the District Attorneys involved in the case. Amy’s site, Diabetes Mine, has the details. Please call those numbers and leave appropriate messages.

I would add another number to call, the Office of the Attorney General - 202-353-1555. The Department of Justice’s mission statement says “To enforce the law … and to ensure fair and impartial administration of justice for all Americans.” and, unless I’m missing something here, “fair” is definitely not happening to Mr. Burns!

As reported by Amy T…

In some of my posts you will see numbers followed by another number in brackets and I thought a little explanation of what they are might save confusion. Well controlled diabetics - read no further, you know all this. Everyone else - read on!

Blood glucose is measured in two different ways, as either Millions of MOLecules of glucose per Litre (mmol/L) or Milligrams per Decilitre (mg/dl) of blood. Most countries use mmol/L, the USA use mg/dl. To convert mmol/L to mg/dl multiply by 18. Here in New Zealand we use mmol/L so I post readings like that with the mg/dl value in the brackets.

There is an additional number you will see diabetics discussing, HBA1c (often shortened to A1c). During the life (about 4 months) of haemoglobin, glucose molecules will combine with haemoglobin molecules. How much glucose combines is dependent on how much you have in you. The important bit is that once it has combined, it stays combined. The amount of this glycosylated haemoglobin is measurable. Non-diabetics will have between 4 and 6% of their haemoglobin glycosylated (that can vary, but not by much), diabetics are (usually) somewhat higher than that. Measurement of HBA1c gives an excellent indication of how well controlled a diabetic has been over a significant (weeks) period of time.

The closer us diabetics can get to the normal range, the better. My average is in the sixes, but I’m aiming for the fives, and I WILL get there!

It saddens and frightens me that many health professionals and organizations seem to think that an HBA1c in the sevens or even eights is nothing to worry about and completely acceptable. I am sure that they are not giving their patients good advice. The higher your HBA1c, the higher your risk of complications. That’s a cumulative effect too. High blood glucose causes damage, persistent high blood glucose causes damage to the damage and so on.

So, there you have it, an explanation of what the numbers mean. If you aren’t diabetic then your knowledge has been increased, if you are diabetic…

If you are a diabetic and haven’t looked at Diabetes Forums then please, take a few minutes and have a peruse. It’s an ideal place to ask questions, give answers and generally be a part of. The others on there are just like us, they are diabetics. They are there and are wearing the T-shirt - 24/7.

One of the regulars on there is in hospital right now. She hit 42.6 (767) despite having NINETY units of NovoRapid. Fortunately she got to hospital before DKA (wiki on Diabetic Ketoacidosis) got her. I’ve never been that high and I’ve certainly never taken that much NovoRapid. Having said that, Tuesday was a bitch. My waking test was 13.7(247) and it took forty units of NovoRapid to get back into the normal range.

There are days when diabetes confuses the hell out of me. There are days when it scares me badly. There are days when I scream “Why me?”. There are days when it makes me laugh. There are days when it exasperates me.

But, every single day of every single week of the rest of my life I will have diabetes and if I don’t cope with it then my life is going to suck, big time. I’ll either have horrible complications in my (shortened) old age or die if I miss a hypo and don’t get found. So, guess what, I do cope with it and I do control it. And, not surprisingly, I’m going to continue coping and cotrolling because…

For some time now I’ve been battling with Dawn Phenomenom, one of the pains in the arse for diabetics generally. Some time around dawn your liver will try to give you a little boost of glucose to set you up for the day. If you aren’t a diabetic then this is no problem, you just wake up at a reasonable blood glucose level, or maybe a fraction high, but nothing your body can’t cope with and actually quite like. If, however, you are an insulin dependent diabetic, your liver will keep pumping the glucose out because there is no insulin to tell it to stop. So you can end up going ridiculously high. This is what’s been happening to me more and more of recent weeks and, folks, it’s bugging me, SERIOUSLY bugging me.

I’ve been uping my Lantus (basal insulin) a little and still it doesn’t make a difference. Yesterday evening I had a bit of a binge on chocolate and fruit gum type things. Well, no surprise, they shot me up. But I had a couple of good hits of NovoRapid (quick insulin) to deal with it. I went to bed at 00:45 and I was 14.1 (254) but I still had a fair bit of NR in me to bring me down.

At 03:15 I woke up with cramp in my right leg which took me a while to get rid of. I tested at 10.8 (195). Still high, but not ludicrously so. There wouldn’t have been much NR left by then, but I would have expected what was in there to get me down into the nines (~165).

Since I woke up this morning I’ve had the following numbers.

07:47 - 16.6 (299)
09:52 - 18.4 (331)
10:20 - 19.7 (355)
10:39 - 16.6 (299)
11:44 - 12.4 (233)
13:09 - 7.3 (131)

During that time I have had one slice of toast (~16.5g carb) with a little spread and yeast extract. I’ve had my normal AM basal of 18u Lantus and Somewhere over FORTY units of NR.

This is geting me down big time.

Please read this article that appeared today on NZCity. If you read it you will notice that a similar warning was given in 2001 but the government ignored it. Diabetes (and other chronic disease) groups might as well tilt at windmills; governments have no real interest in the future, their sole interest is for the rest of their tenure in power. If they spend a fortune on prevention then they have been seen to spend money with no result and are, therefore, wasting it. If it ain’t gonna buy you votes, don’t bother to do it.

Moi? Cynical? Yep, very. I’m realistic too. Money is a large part of the problem. There is a form of Insulin called Glargine (trade name Lantus) which provides an excellent basal insulin. An enormous proportion of insulin dependent diabetics would benefit from it in both the long and short term. In the short term it helps prevent hypoglycaemic events, particularly at night (which can be life threatening). In the long term it helps prevent a myriad of diabetic complications, such as blindness, limb amputation and other such nasties.

You would think that anyone who would benefit from Lantus would be able to get it through the normal government subsidised channels. Not so. It is only subsidised if you are a type 1 diabetic and have had hypoglycaemic attacks that have required intervention by another person. If you are a type 2 then tough, it doesn’t matter how much you would benefit from it, you shat out. If You are lucky enough to have caught all your hypos and dealt with them on your own then tough, you shat out. The fact that you might not catch your next hypo and die as a result is irrelevant. Oh yes, you can get unsibsidised Lantus if you don’t fit the criteria, but it is rather expensive to buy and out of the reach of Joe Average.

Any politicians care to answer this…

Which is more important, the nations health both now and in the future or money and you getting voted back into office at the next elections?

Ah, sorry, lets try again. Any politicians care to answer that HONESTLY?

and her name is…

All you diabetics will understand this one.

Some time ago I wrote this for use elsewhere. I have decided that I should share it with the outside world. It tells of my diabetes and the struggle I had accepting it and will, I hope, give others who are making a similar downward journey a little support. I know where you are folks. It ain’t fun, it ain’t good, but it ain’t going away either. Please, for your sake and for the ones you love and who love you, accept your diabetes and get as in control as you can. It is worth the effort; I’ve seen the effects it can have if it isn’t kept in check and, believe me on this one, they are very unpleasant.

Here it is…

It was five minutes to three in the afternoon on Friday the first of June, 1979, and I had no cash. I did, however, have £8-50 in the bank and a hot date! So I wandered in to the bank, wrote out a cheque, and waited. Whilst I waited, three other gentlemen came into the bank to withdraw some money. Their cheque book was slightly unusual; it bore more than passing resemblance to a sawn-off shotgun! To cut a long story short, the trigger got pulled and a large part of my right calf got turned into mince. Just between you and me, dear reader, getting shot is NOT fun! One hot date straight out the window! I spent three months in hospital, whilst the doctors did skin grafts and such like.

When I left hospital I was told that I would spend the rest of my life on crutches or sticks. “NOT SO!” says I. I worked on my disability, determined that it would not hamper me and I succeeded. Ultimately, the only thing I had to give up was rock-climbing, which put just a bit too much strain on my leg. Other than that, you’d hardly know it was there.

The point was that I fought it. I fought like hell, and I won! Going through that process changed my life. I found inner strength. I felt empowered. I found I could go into a bank again without a cold sweat and abject terror. I got self-respect, something I’d never had. I got respect from other people too, which was something I wasn’t used to. Just so you know, I had a rotten childhood for the most part.

Seven years later, in 1986, I went for a job interview. Part of that interview was a medical, complete with a dipstick in a urine sample. Brown. The damn thing changed colour and turned brown! (Uristix turn brown in the presence of glucose.) Lo and behold, I’m a diabetic, or pre-diabetic to be precise.

I was devastated. I’d put all that effort into fighting for my health and along came diabetes, sneaking up behind me and whispering “Got you!” I was 30 at the time… less than half way through my life - and stuffed, at least that was how I saw it. I think I pretty much gave up. Like building your dream home and then they decide to build a highway, right through the middle of it and knock the place down. How big a kick in the teeth can you get?

My diabetes slowly developed from there. But I refused to believe that I had diabetes, life couldn’t do that to me. I stuck my head in the sand. I was NOT going to let it be there! It was irrelevant. Forget it, it doesn’t matter, just continue life and die early. I decided I’d rather have a short life with a good quality, than a long and boring one. I didn’t expect to see sixty.

Eventually I ended up on insulin, as is to be expected. STILL I didn’t really want to know. I injected when I could be bothered to. I tested occasionally, getting double figures for most of the time. My A1c was in double figures too. Although I didn’t realise it, I was on a slippery slope to a VERY unpleasant end.

Just over a year ago, my life changed significantly. I realised I was in love, truly in love! I had a reason to live and be well. I borrowed a phrase from the film “As Good as it Gets”; Jack Nicholson had the line “You make we want to be a better man” and I had a reason too. I found my inner strength again. I found my self-respect. I had cause to make an effort and I made that effort!

My A1c in 2000 was in double figures, in October 2005 it was 9.7. It’s now consistently in the sixes. My cholesterol levels are improving and I’m a lot healthier than I was two years ago. Yes, I do have some problems; a little neuropathy in the feet and my eyesight could be better. I have a blockage in my iliac artery that needs an operation to fix, but I’ll survive it. The point is that I’m doing my best to make sure those problems don’t get any worse.

My reason for writing this is for all the diabetics out there who have the same attitude I did – “I don’t have diabetes” or “If I ignore it, it will go away” or “It’s only diabetes, it doesn’t matter”. Well, it doesn’t work that way, not in the end. All you end up doing is making a total mess of your body and you WILL go through hell before you die. You will hurt the people you love and who love you but, most of all, you will hurt yourself! You HAVE got diabetes. It will NOT go away. Deal with it and deal with it now. Learn everything you can about it. (Teach your family and friends about it, the view that “Diabetics mustn’t eat sugar” is all to common. Diabetics know that glucose is the fuel our bodies run on and if, we run out of it, we die! It’d be a good thing if everyone else knew that!) Modify your life to accommodate it, which can be done; I’m living proof of it! Call it a marriage if you will. You are married to your diabetes and there ain’t no divorce! Look after your diabetes and life can be good. But, whatever else you do, don’t deny it, ‘cos it ain’t going away!

The “how” is quite simple. It’s your diabetes and you own it, rather than the diabetes owning you. You have to manage it. Adjust your diet. Keep a close eye on your BG levels (and test regularly!). If they are too high, get them lower, by diet or meds or whatever works for you. Learn about DM. Learn about your meds. Monitor what effect they have. Talk to others with DM and learn from them. Get a GOOD endocrinologist on your side. Your doctors and nurses are part of your team and if they aren’t good, change them, or educate them so that they can not only help you, but be a real help to others. One important point to remember, going from poorly managed diabetes to well managed doesn’t happen overnight. It does take time and you will have times when things go pear-shaped. Don’t despair, work through them and they will come right soon enough.

Oh and, I still love her deeply. The Lady in question (and Lady she most certainly is) has shown me care, respect and warmth and helped me greatly. Thank you, Lady.

I have type 1.5 (LADA) (wikipedia on diabetes) Diabetes.

There are some people who will read that statement and know exactly what I mean by it. However, a lot of people will instantly think that I can’t eat sugar and am (or was) obese and that caused my diabetes. Wrong on both counts! And that is the point of this post.

From what I can see, health education is missing from the usual schooling of children. We need to educate; to give our children a little knowledge about the many diseases that they may have the misfortune to come across in life. I’m thinking of diabetes, Celiac, MS, arthritis, cancer, depression, Alzheimer’s and the like. I’m quite sure that a majority of kids leave school knowing nothing about any of those except, perhaps, the name. And frankly, that stinks! Not only do they need to know about them for their own well-being, they need to know because they will, almost certainly, come into contact with other people who suffer.

I wouldn’t want to see a fearful form of education, just enough knowledge that people are aware of these diseases and what it involves.

For those who had the wrong instant thoughts above. If you don’t have glucose in your blood stream, then you are dead. Glucose is, in effect, gasoline for humans, and if you run out of gas, the engine (in this case YOU) stops running. And there is more than one form of diabetes. The one I suffer from has nothing to do with being obese, it’s an auto-immune thing.

Educationalists the world over, please, add health education to your curricula.

For a good view of how diabetes effects people’s lives, read Six until me.

In the early nineties I saw an x-ray machine that provided real-time x-rays of angiograms. Attached to this machine was a tape drive for archiving the x-rays. It looked familiar to me. I was fortunate enough to be able to examine this tape drive internally and it was indeed familiar! It was a totally standard drive that was available off the shelf for about £2,000.

The only differences I could see were the colour and labelling. I might add that I looked very carefully at the internals.

This branded and painted box cost a princely £15,000!

So, my question to the ethical medical equipment manufacturers is…

Why the extra £13,000?

There are now Continuous Glucose Monitoring Systems for diabetics. The cost of one of these here in New Zealand is ~NZ$9,000. The system consists of a small receiver and a transmitter that attaches to your skin. There is also a sensor that you insert through your skin. The sensors cost ~$75 each and last for 3 or 4 days. The receiver is about the size of a mobile phone. It has a small LCD screen and a few buttons on it. I don’t know what is inside the box, but I can’t imagine it would be more complex than a mobile phone. The transmitter is certainly miniature but again, I doubt if it’s anything more than a Bluetooth device. What I’m having trouble with is why $9,000? At that price, very few diabetics could afford to buy one. At $1,000 each I could see them selling like hot cakes!

One interesting point about that price. In Australia they are AU$10,000 each (~NZ$11,500). Why, you may ask, is the price so much higher in Australia. The answer is very simple. In Australia, supply of these systems is subsidised by the government. Is it just me, or is someone profiteering? (I’d like to thank the NZ importer for that bit of prcing information.)

So, my question to the ethical medical manufacturers

Why the extra £8,000?

Now don’t get me wrong here. I know that a very great deal of ground breaking work went in to creating CGMS and I fully understand the need to recoup that cost and to make a profit. But why price the thing outside the range of the vast majority of potential buyers? Which would be better, to sell one at $9,000 or twenty at $1,000? I doubt if they actually cost more than $500 each to make and whilst there is a marketing cost, etc. that would be amortized over a large number of machines and so be a small proportion of the overhead.

So, please, if you make medical equipment or ethical drugs, have a thought for the poor souls that have to or want to buy your products. Make a profit by all means, but a reasonable one. Or, in other words…

STOP RIPPING US OFF!