Don't Let Diabetes Piss On Your Carpet

Photo by Joke du Jour

Diabetes is a LOT of responsibility. It's like suddenly being forced to have a crazed pet that you never intended on having, that you CAN'T say 'no thanks' to, that you CAN'T give back, and that it's not even cute! It's an attention whore, it's expensive (the feeding it, taking it to the vet, getting it appropriate gear, appropriate medical tests, etc.), and if you don't control it, it goes off tearing up all the rooms in your house, destroying your toilette paper, pissing on your carpet, and ruining your good shoes. It will especially do these things when you're NOT paying attention; when you're away, and your mind's focused on other things, and often, BECAUSE your mind is focused on other things.  

"You're crazy, Liz... How can Diabetes piss on my carpet??"

... Well, maybe not literally... :)

But every time you ignore your diabetes, or the longer you have lived with the struggle of controlling high blood glucose, it's a little bit like Diabetes is running amok in your blood stream. High blood glucose levels are more than just a little inconvenience -- aside from the dehydration, and morning after hangover feelings, and mood swings -- they can slowly cause damage to the many nerves, capillaries, and blood vessels that support, connect, and feed our organs; they can damage our organs themselves. If we don't do our best to control Diabetes, it can, potentially, really get out of hand. It can, figuratively, piss on your carpet.

It's because of this potential 'havoc' that there are many areas of our overall health that we must monitor, like our heart, our feet, our kidneys, our eyes, our teeth, etc.  Finding the time, commitment, money, and insurance coverage support to care for all of these can be challenging, and sometimes intimidating.

Now imagine having to do all of this... without health insurance.

....

Welcome to MY world.

When you are Diabetic, and have NO health insurance, it can be easy to emotionally 'give up' with the mounting pressures of managing an expensive disease, and it can be easy to feel guilty that you can't have some of the things you need; you can become a bit complacent.  But I want you to stop right there, and don't feel sorry for yourself: the internet is your friend. Repeat after me: THE INTERNET IS YOUR FRIEND. Make sure to do research, every day, and scour the very ends of the vast internet arena for some answers.  Do NOT take no for an answer, do NOT stop looking, and never, EVER, give up.  Just because some people out there may think that people like you, and me, should die without any appropriate care (because of their own misinformed, personal biases), does NOT mean that everyone else feels this way.  Just because our health care system is broken, and because some doctors may work just for money, does not mean that there aren't doctors are out there, volunteering and sacrificing, every day... honoring their Hippocratic Oath. LOOK for them.

Enter the American Optometric Association.

For some time now, since before diagnosis, I've been experiencing eye flashes, either on my left eye (most aggressively), and sometimes, on my right eye.  I've been somewhat scared.  A cousin of mine who lives too far away to visit, and is an optometrist, told me I needed to get to an eye doctor immediately because this was a potential retinal tear. All the what ifs started running through my mind... what if I was diagnosed just a bit too shy of being able to avoid complications? What if this is the start of retinopathy? What if all of this is going to send me into BANKRUPTCY?!

Well...  The American Optometric Association has a program called "Vision USA," through which volunteer Optometrists have helped hundreds of thousands of low income families since 1991 with basic eye care. Just some basic eye exams, and some good ol' love for their fellow human beings. Basic eye care can go a long way into catching issues early, and preventing further complications from some gone ignored. I would have NEVER known about this, had I not done a little googling and filled out some forms. Vision USA helped pair me up with an eye doctor just BLOCKS from where I live, and that doctor did  more than just some basic eye tests... He did extensive tests on me, including a dilated pupil eye exam, today, FOR FREE. To further my peace of mind, all my tests came out great.  For now, at least, there's NOTHING wrong with my vision that can't, perhaps, be attributed to exhaustion, or aging... And that's worth a LOT for me to hear.

When every little penny pinched counts... there are just not enough ways to say THANK YOU.  Thank you SO MUCH.

And when your diabetes pet wants to piss on your carpet... don't fret; get on the 'net.  Whether it's for emotional support, or volunteer help... You are NOT alone.

Going blue for WDD and some pumping firsts

As many of you will know, November has been claimed by many Diabetes organisations as a month to raise awareness of the condition. We are marking World Diabetes Day, November 14th 2011 in our own small way by turning our pages blue for the month. All over the internet there are little blue circles appearing - the international symbol for diabetes. Yesterday I caught wind of a brilliant project being organised by Mike Young who runs the 'Diabetes in Spain' website. We are not the only ones, it seems laying claim to the month of November. A creative initiative called 'One Day on Earth' invites people to document their experience of 11-11-11 (the 11th of November 2011) through video or photography. Mike is encouraging those living with, or affected by Diabetes to share what it is like to live alongside the condition with the world by giving their submissions a diabetes twist. If you fancy taking part you can find details of how to sign up here: www.diabetesinspain.com/diabetes-11-11-11.

In other news...

At the risk of boring you senseless, wittering on about the first few hours of life as an embryonic pumper I can report the following:

First comfy cannula. When I went to see the DSN I was given some 'standard' 9mm Quick-Set cannulas. They seemed comfortable enough, though there was a constant low-level itch. I swapped one for another in case the first had gone in wrong somehow, and it felt pretty much the same. How was I to know how it was supposed to 'feel'? A few forum posts seemed to indicate that being constantly aware of the location of the set was not 'normal'. Last night I swapped the 9mm for a shorter 6mm cannula and bingo! About half an hour after insertion the initial tingly sensation has worn off and I cannot feel anything at all. No tenderness when I poke at the plastic surround on the skin. Nothing. I have not tried other varieties yet, but at least I know I can use these. Great!

First 'free roaming' night. The very first night I popped Artoo in the pocket of my pyjamas. I don't usually wear trousers under the duvet, but instinctively felt some sort of containment was the way to go. It wasn't bad, but my legs got hot and Artoo kept falling out. Last night I initially started with the clip fixed to a loop around my neck (another forum suggestion) but didn't like the sensation of being a bit tangled. Early on in the night I dispensed with the loop/clip and just let Artoo roam free. This was by far the comfiest so far, nestling in the dent in the mattres around waist height. As I turn over from side to side I just locate, grab and shift to the other side in my semi-comatose state.

First public display. I went to the gym for the first time this morning. Something I think every new pumper has to deal with is the attachment thing. How others might perceive you as different, even those you don't know, and whose opinion matters very little to you. I wondered if getting changed in front of others would make me feel a little self-conscious. It's normally fairly empty in the changing rooms when I am there but not today... oh no. The place was packed! Nevertheless when I lifted my shirt and detached Artoo no-one seemed to notice in the slightest. I've decided that since my workouts are usually under an hour I will, at least to begin with, detach Artoo and leave him in the locker while I exercise. I even used the little cannula cap thing this morning. But I'm not sure how long that attention to detail will last. Showered off with no problems... Man! that sticky tape stuff is strong. Buoyed by everyone's complete lack of interest on my way in, I decided to test the waters further as I changed after showering and deliberately struck up a conversation with someone while I primed the tubing and re-connected.

Not even a flicker of an eyebrow.

It seems that pumps, like injections in restaurants are protected by a Douglas Adams 'SEP field'. A cognitive filter which applies almost universally with perhaps the exception of some young children and a handful of adults. Because it is something inexplicable, odd and unexpected most people simply do not see the pump, even when you interact with it, merrily press buttons and make bleepy noises. Their brain edits it out of the visual field because it is Somebody Else's Problem and life is much easier without having to worry about what it is.

So there we go. Artoo and I are off and running. And I can't wait to get cracking with insulin next week.

UPDATE: Pumping for two months - a little bit of everything

The holy grail? HG1-c a CGM without consumables

I had a comment posted over the weekend that drew my attention to a new CGM (continuous glucose monitor) technology. It's so new that it's not even available yet, anywhere in the world, and while I suspect that the commenter ('Bob Slack') may possibly be part of the 'marketing machine' it is, nevertheless, interesting enough for me to want to post about it.

I've been banging on about CGMs for ages. As far as I can see they are perhaps THE most significant step forward in diabetes care in the past 10 years. For my money a full-time CGM would have at least as much benefit to many MDI patients as a pump. The ability to know at any given moment, not just my BG level but also the direction it is heading and the rate of change would be a complete revelation to me. Suddenly you would have three times the amount of information on which to base your decisions. Managing diabetes often feels like steering an ocean liner through a tricky maze of sand bars and reefs. Blood glucose levels can change so rapidly with food or exercise, but the insulin 'steering mechanism' we are using has a frustrating time-lag of a few hours before its effects are truly felt. Dodging highs and lows before they happen is often a case of informed guesswork based on years of experience combined with living as many days as possible the same way to try to reduce the ridiculous number of variables involved. Reducing spikes after meals can involve injecting early to give the insulin 'a bit of a head start', while simultaneously trying not to overdo it and risk a post-meal dip. Sometimes it works, quite often it doesn't.

A CGM takes a reading from 'interstitial fluid' around every 10 minutes and gives an idea of what the BG level was perhaps 10-15 minutes ago. Up till now the readings have been taken via a sensor placed under the skin. Every few days this sensor had to be replaced, and they are not cheap. Running a fulltime CGM in the UK is likely to set you back thousands of pounds a year and currently NICE does not recognise them as a stand-alone treatment method. There are only a handful of people who have managed to secure NHS funding for CGM therapy in the UK, mostly children. Either their clinical circumstances are unusual enough to swing the extra expense, or they are very very skilled and determined negotiators.

The HG1-c by C8 Medisensors is based on what appears to be completely new technology. It uses non-invasive optical measurement so that no expensive under-skin sensor is required. In theory you just strap it to you for as little or as much time as you want. Of course since it is not yet available there is no way of knowing (apart from reading the marketing promises) how well, if at all, it might actually work, how much the unit will cost and even whether it will ever be licensed for use in the EU or UK.

Still... This could be one to watch.

Beating Diabetes... anyone fancy a cure?

I'm just coming to the point in my life where I've lived longer with diabetes than I lived without it. Ever since diagnosis I have read about, or been told about exciting research which could have profound effects on those living with diabetes. I have witnessed the release and gradual acceptance of amazing new technologies and treatment options which make diabetes more controllable than ever before. Every year I've heard of breakthroughs that bring that elusive prevention or cure one step closer.

But anyone who has more than a passing experience of this condition will know that it can be an infuriatingly complex and difficult business. Most reports of dramatic research developments usually end with caveats about 'very exciting, but early days' and 'further research' being needed. Typically the timeline suggested before things come to fruition is 10 years. I don't know why they pick that number, but they always seem to. Long enough, perhaps, for everyone to have forgotten the promise.

So you might think by now I'd be all cynical and downhearted? Nope.

Before diagnosis I had never really had much to do with the medical profession. I'd not broken any limbs as a child, or needed to go to the doctor much. I had a brief stay in hospital when I was around 8 after being hit by a car crossing a road, but on the whole medics, hospitals and GPs weren't really in my frame of reference. Suddenly, in my early 20s there I was. Right in the middle of multiple appointments and practitioners, a hospital stay, armfuls of blood tests and with an on-going connection to all these people stretching out in front of me. Not only that but I became very aware of others diligently working away in quiet labs prodding and poking at diabetes, turning it over and over with a stick and trying to figure out how to make it easier to live with, and if possible disappear completely.

There has never been a better time in history to be a diabetic (and given the numbers of us around, that's quite a good thing). And tomorrow, or the day after, or the day after that, someone, somewhere will have a thought, or observe some happy accident, then test it and tweak it and suddenly BAM!

No more diabetes. Ever.

That would be great, right? If you live with D, I'm pretty sure you'd like that. Quite a bit. And the fact that there were lots of thoughts and ideas earlier that didn't come to anything will not be important. The dead ends and diversions will be of no consequence because the beast will be slain, or the perfect treatment option to control it will be right there in our hands. If not 'no more diabetes', I'll settle for 'no more diabetic complications'.

If only we could speed the process. If only we could, in our own small way, play a part in that amazing story.

Well we can.

I was contacted a week or so ago by someone who asked if I could raise the profile of a campaign to help beat diabetes. The NHS's National Institute for Health Research 'Diabetes Research Network' has launched the Help Diabeates campaign to encourage people to get involved in the search for a cure or better treatment for diabetes. Because of the nature of the teaching hospital I attend for my diabetes care I have been able to take part in various research projects in the past. But this, I think, is part of the difficulty... Any researcher with a brilliant new idea to try needs to be able to make observations and test things with suitable candidates to develop their knowledge, explore their idea and push it further. If they are attached to a clinic they might be able to ask around and see if there any volunteers, but I suspect they are going to be scratching around with only a handful of people who fit the criteria.

And if they can't get their research done we can't get our cure.

In simple terms the Help Diabeates campaign offers you an easy way of offering to be involved at some point, and only if you want to for any particular project. It's a way of throwing the research net a little wider. You add your name to the database, they ask you a handful of questions. Then if there's a research project that might benefit from your involvement you get contacted and are given the chance to take part. Even if you decide you want to and then change your mind, you can back out at any stage.

What are you waiting for?

Find out more about Help Diabeates here, then sign up to take part here.

And if you dont live in the UK? Well just look around. In a lab somewhere in your country there's a clinical trial with your name on it.

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The shape of things to come?

Before I got all hot under the collar yesterday about that news item on the BBC website, I had meant to write a quick post following my meeting with the lovely LJ, one of the DSNs at the hospital.

I gave her a potted history of the last two years (I've not really been in contact with the DSNs much for a very long time), the improvements I been able to make and the challenges and issues I still face. We talked hypos, warning signs, fear of driving, fasting and overnight levels, gym visits and everything in between. I explained my lingering uncertainty with the whole idea of pumping which some of you will know all too well. I've been bleating on about it for years.

Essentially it comes down to this - having got as far as I can with MDI, I am at the point where I see it as a clumsy, slightly imperfect way of mimicing the action of a pancreas. Pumping, on the other hand, is an incredibly subtle, but still slightly imperfect way of mimicing a functioning pancreas.

However I am convinced that more problems would be solved than created, and the lingering doubts I have will never go away except by experience.

So...

LJ has suggested that she recommends to my consultant that I begin insulin pump therapy (I have requested a Paradigm Veo to give me the option of self-funding the CGM facility whenever I need/can afford it). If the recommendation and funding is approved it is possible I could be pumping before Christmas.

I'm unexpectedly excited about it, and if I'm honest, just a little bit scared.

Now to get hold of a copy of Pumping Insulin: Everything You Need for Success on a Smart Insulin Pump by John Walsh

Update: Look Sir, Droids!

BBC: Designer diabetes drugs 'cost NHS millions'

http://www.bbc.co.uk/news/health-14999853

There are many hopelessly inaccurate news stories published about diabetes, too many to count, but this is the first one whose tone was so indefensibly vile that I have been moved to immediately write a letter of complaint. Accurate and impartial this wasn’t. Not even close.

If I try really hard, and because I know a good deal about the subject I can just about glean the real story here - that some people with diabetes are being given different treatment options in the wrong order. If I read through layman’s eyes, I'd see everyone with diabetes as a scandalous leech on the NHS’s purse. A costly and, if I build in information from most other media coverage (including that on the BBC), largely self-inflicted plague on society.

I read a lot about obesity causing diabetes. I read a lot about the ‘lifestyle’ disease. I don’t often read that only around 10% of those classed as overweight or obese in the UK are diagnosed with diabetes. I never read that a significant proportion of people diagnosed with type 2 diabetes are normal weight or underweight at diagnosis, and that those who are overweight have in all likelihood been gaining weight for some time as their body begins to struggle to metabolise carbohydrates. I rarely if ever read a media article that properly distinguishes the metabolic disorder and autoimmune disease. The recent Diabetes UK campaign to highlight the huge number of people with diabetes in the UK who are not receiving the basic checks to ensure their health went largely ignored. It is suggested that 90% of the cases of sight loss in diabetics could have been prevented with earlier identification and treatment.

But those things don’t fit the default media’s diabetes stereotype of “fat, lazy and all their own fault”.

I have been using insulin as a treatment for diabetes for over 20 years and I wish to point out to Helen Briggs that there is no such thing as a ‘designer’ insulin. Insulin is not something I choose to match my summer wardrobe. This is not some flimsy, inconsequential part of my life. All insulins are not the same. Diabetes is a complex condition to manage. Whether type 1 or type 2, every single mouthful one eats has to be considered. For those using insulin, particularly rapid-acting analogues, the timing, dose and activity curve of the insulin needs to be matched as closely as possible with the likely absorption of carbohydrates in food, while factoring in exercise, illness, stress, even ambient temperature.

The target blood glucose range that I am asked to hit is so tiny that the permitted BG meter inaccuracy of 10-20% almost entirely covers it. And if I stray very far outside that target? Blindness. Kidney failure. Nerve damage. Heart attack. Loss of limb. Coma. Death.

The benefits of using the very best treatment options available to me are not ‘modest’. My circumstances are not ‘exceptional’.

The potential consequences of using inappropriate treatment options to save the NHS ‘£625 million over 10 years’ in the short term, could cost the NHS a great deal more in the treatment of unnecessary diabetic complications. I have been diabetic long enough to pre-date analogue insulins. I’ve used the cheaper human formulations and they are not ‘just as effective’. Not for me, and not for many others.

I accept that diabetes is costly to treat. I accept that incidence is increasing and that this raises concerns over the future cost to the NHS of treatment. What we need though is better treatment. Better education. And above all better, more balanced, more informed coverage in the media.

Enough of the diabetes-bashing.

Shame on you BBC, I had thought better of you.

Timesulin - a pretty smart idea

Just came across 'Timesulin', which is a replacement cap for insulin pens which records the amount of time that has passed since the last injection.

As a person who actually changed insulins to get a 'Memoir' pen with a dose memory this simple solution to part of the problem ("Hang on... have I injected or not...") appeals to me. Since having the Memoir I know I often check to confirm the exact timing of doses. Sadly however the Memoir is currently unavailable and Novo Nordisk's Novopen Echo is still not scheduled for release in the UK. So at the moment there is just no MDI device that records the timings of your injections.

Enter 'Timesulin' an ingenious digital timer which can be used as a replacement cap for your existing insulin pen (currently only Kwikpen®, Flexpen®, Solostar® are supported). When you remove the pen cap to inject the timer resets to zero and begins to count up again. So by looking at the pen lid you can tell how many hours (or minutes) have passed since you last injected. Cleverly if you pop the pen lid off to check how much insulin is still in the cartridge (or whatever) the timer keeps counting. It only resets the timer if the cap stays off the pen for more than 8 seconds.

At the time of writing the Timesulin caps themselves are 'in the final phases of production' and are due to be available for purchase from mid-November 2011.

More details here: http://timesulin.com/

Would be very interested to hear from anyone who gets hold of one, and whether they found them useful. Leave us a comment below...