Diabetes Wise

San Francisco: Diabetes-Wise

After a near-as-damn-it strip search at San Francisco Airport Security; After a two hour delay caused by a "leaky pressure seal" and the wait for a new aircraft to arrive; After 10 hours wedged into a seat next to a continual snorer; After two of the best weeks of my life: I'm home!

I'm so excited that even though my jet-lagged body thinks it is the early hours of the morning, even though I have a suitcase full of dirty clothes to wash and even though I've not yet had chance to download and sort through many of the huge number of photos that I took, I want to launch right in with a full account. But I know that if I did it right now, I couldn't do it justice. If you are interested in a non-diabetes oriented account, and more pictures, they will come soon, but  now just a taster:

Diabetes-wise, I had a pretty good trip. I came a little unstuck but getting over my jet-lag a lot faster than I ever have before and failing to turn my pump clock back fast enough to keep pace, which led to a few swings in the first few days. But compared to doing a trip like this on MDI... no contest! My biggest problem came over the Easter weekend, when we took a drive down the coast on Highway 101. I filled my pump up that morning from a bottle of Humalog I'd been carrying in my backpack. It seems that the insulin in that bottle may have been no good. As we cruised down the coast, my blood sugars cruised between 11 and 16 (200 and 290) all day, which changing the set and injecting with a syringe failed to solve. I had only taken the same bottle of Humalog along with me, and certainly didn't feel terrible enough to warrant turning back. So I ran a  +70% temp basal all afternoon and filled the pump with new insulin that night, which solved the problem. These angry looking shots of the Pacific capture my mood towards diabetes that day, but I still had a great time.

We ate some great food, including this masterpiece at Horizons in Sausalito. I got the carbs way wrong. If anyone cares to guess my calculated value based on the insulin units finally required, answers on a postcard comment please...  We also ate at a fantastic place in the Mission called Andalu, which serves a modern take on Tapas; Small Plates. Small Plates dining is great for a social meal with friends and family, great for variety but terrible for carb counting, since most of the food isn't all on the table at one time, never mind on your plate. Let's just say I needed a couple of corrections after that one, but the delicious Strawberry Margheritas probably didn' help much!

I got my fix of junk too - Hershey's, Oreos and the much coveted Lucky Charms (yes, I know they turn the milk green, but they seem to have got around that by making a chocolate version, that turns the milk brown instead!) Fortunately, while this stuff isn't good for anyone, it is easy to bolus for pretty accurately, thanks to the standardised nutrition facts, which just aren't as good in the UK.

My favourite souvenir from the trip?

Yes. It is a box of Insets.

Before you fully establish that thought that I am totally crazy, let me give you the explanation. Insets are not available in the UK, due to some sort of problem with Medtronic. The Animas distributers in the UK are therefore only able to supply Comfort and Comfort Short sets. If you want a 90 degree infusion set, you need to order it from Medtronic, Roche or Smiths. The problem for me is that if I order from elsewhere, I have to pay full cost out of pocket. So I stick with Comforts, which I actually quite like, especially the Shorts. When I used to use Quick Sets I had far more set problems than I have ever had with Silhouettes or Comforts, but the 90 degree sets scar my skin, and so quite possibly the subcutaneous tissue, a lot less, and they seem to stick better when I go swimming. So when a friend offered to trade me a box of Insets (I took a box of Comforts back in return) I jumped at the chance. I really like them, but since I only have the one box, they will have to be a 'special occasion' set!

And my favourite welcome home package?

Which contained:

My brand new replacement pump. What more could I ask?

Flowers In My Hair

My suitcase is packed, I have my passport and tickets. All that remains is for me to put some flowers in my hair.

I'm off to San Francisco!

And The Prize Is...

As Scott has already updated, the prizes for the test strip contest have been awarded!

For me no big boxes and pink styrofoam peanuts, but instead the awesome kid-in-a-sweetshop feeling of being able to choose myself an indulgent treat from Amazon UK.

It didn't take me long to decide, and the astute amongst you may already have guessed where this is going...

My exciting package in the mail came a week ago. I just wanted to let Scott announce the prizes first.

You see, I had made a conscious decision not to allow myself to buy the ER Season 6 DVD this month, as it was really too much money in an otherwise financially demanding month. Scott's prize (actually, a very thoughtful gift!) made ER Season 6, one of the best, into a bargain that I couldn't resist.

It may not be Cherry Coke, but I'm sure that I've mentioned ER somewhere here before... ;-)

Thanks a bunch Scott, you're a great guy! 

Snow!

I visited my parents in Kent yesterday, and stayed overnight. We awoke this morning to several inches of snow! On April 10th! I travelled down there yesterday morning wearing only a T-shirt and a denim jacket - woefully inadequate for my return journey!

As the BBC News notes, this was something of a surprise to everyone.

It was very pretty though. I wish I'd had my camera handy.

Mastering Diabetes?

Sandra's post A Dinner Out got me thinking. I had a lot of trouble composing a comment partly because it set me thinking so hard. It gave me, like others who commented, a spotlight on what it feels like as a parent of a kid with diabetes. This is something that I am continually thankful to the parents who blog for. But this post made me realise that I haven't ever actually talked with my parents about this. We've talked about diabetes a lot, but I've never asked them how they dealt with it emotionally. Or how they still feel about it. And it made me want to go and ask them.

Something else struck me from that post though.

The concept of 'Mastering Diabetes.'

It set me thinking about exactly how 'mastering diabetes' could be defined. At what point would I, or anyone else who lives with diabetes, feel able to say:

"I've got it. I've mastered diabetes"

I've wondered whether it is on a purely emotional level. Is it reaching the point where diabetes is no longer the first thought when we wake up, the last thought at night and the only thought that fills the moments in between, regardless of the level of control? I'm not convinced that it can be, because that point seems easy enough to reach through pure denial of diabetes and doing nothing at all to attempt to manage it. I'm pretty sure that doesn't define mastering diabetes.

On the opposite side of the spectrum, is it a purely clinical thing? Consistently maintaining an A1c of, say, 7% or 6%. Or perhaps lower than that, even closer to 'normal limits'. Say 5%. But then, what if that value is the average of a wild bunch of numbers? Always too high or much too low, but rarely right on target. What if that result is at the expense of other 'normal' aspects of life? Suppose that you achieve it through thinking of nothing but diabetes, eating the exact same three rigid meals every day, never eating in a restaurant, never taking a holiday, never having any fun. Can you say that you have mastered something if it takes such a drastic reinvention to do it? Have you mastered something if it is that all-consuming, or has it mastered you?

Johnboy commented on this post

"Maybe if we concentrate on outscoring our figurative D opponent (and perhaps beating the point spread) that will suffice for now?"

This statement seems to capture elements of both the emotional and clinical; The emotional outscoring of the opponent; The clinical reduction in the variation of blood glucose.

So is mastering diabetes best represented by making it fit into life, so that we can do all of the things that we want to, knowing what adjustments to make, and when, without having to devote any time to working them out, sucessfully avoiding highs, lows, swings and complications, and all without getting frustrated? Is diabetes mastered when it no longer stops us from doing absolutely anything, be that through blood sugars that are too high or too low, or the fear them, or through our own stupidity? Excellent control with minimal intellectual and emotional investment.

Is that even possible?

I guess then that I fear that mastering diabetes is something that lies out of our hands, as patients and carers, entirely. Is it more likely to be something that comes from the labs? Will diabetes really only be mastered when we have a cure?

Or is our very best good enough?

A Not So Nice Surprise

Where there is good, there is... not so good.

A surprise bg test result of 17.5 (315)

Ok, the result was not a total surprise, because I felt high. But being that high definitely hit me out-of-the-blue.

I had to take my pump off earlier. Right before I disconnected I was 7.9 (140). I took a correction to bring me to 5 (90) and added 0.5 units. In the end, I was disconnected for a little over an hour. I reconnected and gave myself another 0.5 unit bolus. I'll admit, I didn't test because I was in a hurry. When I tested 30 minutes later, I was at 6.8 (122) and an hour an half after that 6.4 (115)

Caro 1, Diabetes 0

Until three hours after that, when I got the 17.5 (315)

Why?

And why, diabetes, do you have to insist on kicking me in the teeth after I've won a small victory: tamed you, and kept you down as I negotiate an obstacle?

I don't like your surprises, diabetes.

I prefer nice surprises

A Nice Surprise!

Waiting for me in my mailbox when I came in this afternoon:

Which is what I call service, given that it was only released yesterday, and I requested Super-Saver delivery!

I may be gone for... 938 minutes!

(For more on my ER Obsession see here and the comments here)

Stupid Diabetes, Stupid Me

On Saturday night  I had plans to meet and stay with a friend in Chelmsford, a 30 minute train ride from Liverpool Street station, which in turn is a 40 minute bus ride from my house. Only, the journey didn't quite go as planned.

It started off perfectly. I didn't have to wait long for a bus, something which is still at times a hit and miss affair. I arrived at Liverpool Street with time to spare before my train. I bought my ticket. I decided to do a quick bg check...

No kit.

For a fraction of a second, sitting in the middle of a busy London station, with my belongings strewn out of my bag after a desperate search, it crossed my mind to screw it, just this once. To take a chance, take a little less insulin and hope that everything would be ok. But of course, it was only a fraction of a second, because knowing my blood glucose value, or at least having the means to know, is such an important, integral part of my life that I couldn't possibly not have that ability for nearly 24 hours. Especially a 24 hours in which pizza and a few glasses of wine were likely to feature.

For a much longer period of time I wanted to sit there and cry. To curse myself for being so stupid as to forget it - something I can't ever remember doing before. I wanted to lie down right there on the floor of the station and throw a hissy fit at diabetes, not allowing me to forget about it for even one second, because if I do I end up doing something this monumentally stupid. I wanted to scream without caring what strangers thought, or if the police came to take me away.

Of course I didn't. I went home to retrieve the kit. And I reached my final destination almost an hour and a half later than originally planned.

Stupid diabetes.

Disturbing Statistics

Earlier today, whilst sorting through some old files, I came across an edition of 'Balance', the magazine of Diabetes UK , from the end of 2004. I'd kept that particular issue because one of the columnists had written about tooth enamel. I'd meant to respond with a letter, but somehow never got around to it.

Flicking through, the magazine fell open at 'Testing, Testing', an article presenting the results of a survey carried out earlier that year on blood glucose testing practices of a sample of Diabetes UK members. The survey came about as a result of problems that came to light that year of many people with diabetes being denied adequate numbers of blood glucose testing strips on prescription, and therefore paid for by the NHS, a problem that rumbles on to this day. I'm not sure whether the survey was of any value in opposing the practice, given that much of the data suggested that many people were getting no value out of the tests they performed.

Some of the results were very disturbing. For example only 24% of respondents said they ever tested their blood glucose before driving. Admittedly a number of those in the survey were Type 2, but 34% had Type 1, and a proportion of those with Type 2 were on insulin. Why bother paying for car insurance if you potentially invalidate it each time you start the engine? If you have an accident due to hypo- or severe hyper- glycaemia and the insurance company aren't satisfied that you'd taken reasonable steps to avoid the problem, they won't honour their cover. And you could end up being arrested to boot. Or dead.

The one that I found perhaps the strangest of all was that less than half of all respondents at risk of hypoglycaemia said they tested when they felt low. What do the other half do? Ignore the symptoms and wait until they pass out perhaps? Or just eat anyway, and nevermind about whether they need to? If I did that, there would have been times in the past when I never stopped eating. They are probably the same people whose main reason for testing is simply to 'monitor my condition', as opposed to adjusting treatment, for tight control or for peace of mind. I guess you can monitor all you like, but if all you get are a string of 20s (360s) then it isn't going to make the slightest bit of difference.

Sometimes, in this unrepresentational environment of the OC and other internet groups and mailing lists, where the vast majority of people are very proactive, highly motivated and want to achieve the best control possible whilst living life to the full, I need to be reminded that an overwhelming majority of people aren't like that. If that is through choice it is sad enough, but if lack of education plays a part, it's a tragedy.