Artoo and I began our little adventure just over a year ago. It has been as steep a learning curve as anyone ever suggested it might be. At times it has felt like I was newly diagnosed all over again, and despite 20ish years of experience with injections, there were weeks when that knowledge seemed to count for almost nothing.
A year ago I noted that in hindsight, perhaps beginning to completely change insulin delivery method immediately before one of the most challenging and notoriously chaotic times if the year foodwise might seem a little foolhardy. But in the current challenging financial climate it would be a brave man who would turn down the offer of NHS funding for an insulin pump without a very good reason.
Last Christmas was, if I'm honest, a bit of a mess BG-wise. Much as I stand by the general assertion among people living with diabetes that there are two days (Christmas and birthdays) on which and any carbs eaten don't count, the perfectionist in me delights in giving myself a kicking whenever dodgy results appear. Even when (and perhaps especially if) I'm sort of expecting them. I didn't get myself into any serious bother last December, but it was certainly not my finest hour. Since the Summer, and especially since changing the sets I use to Silhouettes (with occasional Quickset), Artoo seems to have really got into his stride. I had a pleasant surprise with an A1c improvement at my annual review, and if anything averages and SD have been slightly better since (with the occasional lapse obviously!).
I'm not naive enough to expect a Christmas entirely without an errant reading (or 10), but my trust in Artoo's judgement and general ability to accurately correct my mistakes has never been higher. As long as I can weather the basal-tweaking turbulence when the lack of gym visits kicks-in I am hopeful that I might be able to enjoy a few treats here and there over the festive period (along with the inevitable selection of wildly non-standard meals) and still keep a relatively decent hold of things. I can but hope.
Thanks to everyone who has visited and commented on our blog this year. It has been an eventful and exciting one in many ways and it has been lovely to share it with you all.
Have a brilliant Christmas and here's to unexpectedly good results this festive season and rock-steady BGs for 2013 all round.
Saturday, 22 December 2012
Wednesday, 19 December 2012
Unusual suspects : age at diagnosis
A short while ago I was musing about one of the questions which form part of the scope of my little side project. It got me thinking, and in order to have a slim chance of having something to say when the subject eventually comes up for discussion I began to wonder just how old people generally are when they are diagnosed with various types of diabetes.
In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.
There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.
First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.
While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.
So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!
Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!
Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:
So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.
It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.
In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.
There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.
First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.
While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.
So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!
Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!
Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:
| Type 1 | Type 2 | Total | ||
| Number | 158 | 63 | 221 | |
| Average Dx Age | 18 | 45 | ||
| Dx uncertainty/change | 12 | |||
| Avg Age at initial Dx if changed | 35 | |||
| By age group | Type 1 | Type 2 | T1 % | T2 % |
| <= 17 | 90 | 0 | 57% | 0% |
| 18-34 | 47 | 7 | 30% | 15% |
| 35-44 | 14 | 24 | 9% | 38% |
| 45-64 | 5 | 29 | 3% | 38% |
| 65+ | 2 | 3 | 1% | 5% |
So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.
It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.
Wednesday, 24 October 2012
Seeing red: Food labelling, traffic lights and missed opportunities
My heart rate was significantly raised this morning while at the gym. Not because of my less than challenging treadmill pace, but because of a news item that came onto breakfast TV about the new food labelling system that is expected to be in place by the Summer of 2013.
I wrote about the public consultation on the subject that took place in July 2012. At that stage I was full of giddy optimism that my eloquently worded appeal would result in a Marvellous New World of clearly labelled, impeccably helpful packaging that assisted the entire UK in making better food choices, but in particular supported the millions of people living with (or at risk of developing) diabetes of one form or another - something upward of 5% of the population by 2010's numbers. The people for whom this stuff really matters.
The precise details of the new front of pack splodges are still being worked out, but from what I've read my life is about to get just a little bit more difficult and I'm going to be very grateful that my phone has a calculator on it.
I don't really have a particular problem with the traffic light system as an infographic device, my concern is based mostly on the information that the current systems display, and in particular the obsession with listing 'of which sugars'.
Let's just get this straight, 'of which sugars' is an almost entirely useless piece of information. Well, not quite. If you were comparing two products side by side that were virtually identical in all other respects, then perhaps 'of which sugars' might be worth casting an eye over.
The Really Big Problem is that most people *think* they know what 'of which sugars' means. People will believe (because they have always been told that this is the case) that all food with lots of sugar in it will zoom straight into the bloodstream, while food with no added sugar will be absorbed more slowly. Like most of the best misconceptions this opinion persists because it is almost true. Food with a large amount of added sugar is likely to hit your bloodstream fast. But there are many many foods which are broken down significantly faster than sucrose. And the REALLY Really Big Problem is that many of the foods that break down in the gut faster than sucrose (table sugar) are the very same ones that people think of as being 'healthy'. Brown or wholemeal bread, for example... Pretty much any breakfast cereal you can think of... Mashed or baked potato...
The Glycemic Index (or more helpfully the Glycemic Load which takes portion size into account) is a measure of how disruptive a food is likely to be to blood glucose levels. To measure GI a smallish number of test subjects are usually given 50g in carbohydrate of a particular food and then their blood glucose levels are measured to establish how fast the energy in the food hits the bloodstream. Simplistically, all carbohydrate is made up of units of monosaccharides (glucose) joined up in chains. The easier it is to break down the chains into glucose, the faster it will be absorbed. On the GI scale, pure glucose scores 100. Sucrose, table sugar scores a 'moderate' 60. Despite it's 'starchy' reputation the carbohydrate in wheat is very readily broken down and there is far less difference between white and brown versions than we might hope for - exact values will vary, but wholemeal bread is likely to be between 68 and 78. Yes, that's right... gram for gram of carbohydrate it's faster than sugar. When you begin to look at breakfast cereals things get even more bizarre as far as the 'of which sugars' is concerned. Cornflakes weigh in at a blistering 77-93, while Crunchy Nut drop a little at 72 and Frosties score a mere 55. These breakfast cereals will be slowed a little when eaten with milk, but completely counter-intuitively the ones with added sugar are *slower* than those without, presumably because the corn itself is so darned fast.
That's not to say that any of the foods I mentioned are necessarily 'off limits' for a person with (or without!) diabetes - but I really think we need to get over our obsession with sugar in this country and especially where food labelling is concerned. A low 'of which sugars' does not make something OK. It cannot be relied upon as a marker of how quickly the carbohydrate in a food will pass into your bloodstream at all. And for a T1 person playing at being their own pancreas, or a T2 attempting to eat in a way which helps their wonky metabolism this stuff really matters.
From a carb-counting type 1 perspective the proposed changes are also incredibly inconvenient. This fatuous obsession with the display of 'sugar content' means that prepackaged foods will, most likely, no longer display total carbohydrate content per portion, certainly not on the front of the packs. Sainsbury's made this change some time ago adopting a 'traffic light' system and it bugs me every time I need to eat something of theirs. I find myself scrabbling around on the back of the pack for the 3.5pt 'per 100g' details then have to fish out a calculator and endure some mathematic acrobatics to evaluate what my portion of a 326g pack will end up being in terms of carbohydrate. And it used to be just written there in big letters 'per serving'.
Of all the groups of people in the UK with a borderline obsessive interest in what food contains, the ones who stand with furrowed brow in supermarkets poring over pack labelling smallprint more often than perhaps any others are those living with diabetes. This initiative *could* have made our lives easier, it could have included GI indications as standard, and scored total carbohydrate as a proportion of Guideline Daily Amounts so that people went easier on carbs generally. Who knows - that could have saved 1000s of people from developing T2D in the first place if their metabolisms are already beginning to struggle. Instead we are stuck in the same old rut of sugar=bad, fat=bad, carbs=good which just isn't helping anyone.
I await next summer's pack designs with a heavy heart.
I wrote about the public consultation on the subject that took place in July 2012. At that stage I was full of giddy optimism that my eloquently worded appeal would result in a Marvellous New World of clearly labelled, impeccably helpful packaging that assisted the entire UK in making better food choices, but in particular supported the millions of people living with (or at risk of developing) diabetes of one form or another - something upward of 5% of the population by 2010's numbers. The people for whom this stuff really matters.
The precise details of the new front of pack splodges are still being worked out, but from what I've read my life is about to get just a little bit more difficult and I'm going to be very grateful that my phone has a calculator on it.
I don't really have a particular problem with the traffic light system as an infographic device, my concern is based mostly on the information that the current systems display, and in particular the obsession with listing 'of which sugars'.
Let's just get this straight, 'of which sugars' is an almost entirely useless piece of information. Well, not quite. If you were comparing two products side by side that were virtually identical in all other respects, then perhaps 'of which sugars' might be worth casting an eye over.
The Really Big Problem is that most people *think* they know what 'of which sugars' means. People will believe (because they have always been told that this is the case) that all food with lots of sugar in it will zoom straight into the bloodstream, while food with no added sugar will be absorbed more slowly. Like most of the best misconceptions this opinion persists because it is almost true. Food with a large amount of added sugar is likely to hit your bloodstream fast. But there are many many foods which are broken down significantly faster than sucrose. And the REALLY Really Big Problem is that many of the foods that break down in the gut faster than sucrose (table sugar) are the very same ones that people think of as being 'healthy'. Brown or wholemeal bread, for example... Pretty much any breakfast cereal you can think of... Mashed or baked potato...
The Glycemic Index (or more helpfully the Glycemic Load which takes portion size into account) is a measure of how disruptive a food is likely to be to blood glucose levels. To measure GI a smallish number of test subjects are usually given 50g in carbohydrate of a particular food and then their blood glucose levels are measured to establish how fast the energy in the food hits the bloodstream. Simplistically, all carbohydrate is made up of units of monosaccharides (glucose) joined up in chains. The easier it is to break down the chains into glucose, the faster it will be absorbed. On the GI scale, pure glucose scores 100. Sucrose, table sugar scores a 'moderate' 60. Despite it's 'starchy' reputation the carbohydrate in wheat is very readily broken down and there is far less difference between white and brown versions than we might hope for - exact values will vary, but wholemeal bread is likely to be between 68 and 78. Yes, that's right... gram for gram of carbohydrate it's faster than sugar. When you begin to look at breakfast cereals things get even more bizarre as far as the 'of which sugars' is concerned. Cornflakes weigh in at a blistering 77-93, while Crunchy Nut drop a little at 72 and Frosties score a mere 55. These breakfast cereals will be slowed a little when eaten with milk, but completely counter-intuitively the ones with added sugar are *slower* than those without, presumably because the corn itself is so darned fast.
That's not to say that any of the foods I mentioned are necessarily 'off limits' for a person with (or without!) diabetes - but I really think we need to get over our obsession with sugar in this country and especially where food labelling is concerned. A low 'of which sugars' does not make something OK. It cannot be relied upon as a marker of how quickly the carbohydrate in a food will pass into your bloodstream at all. And for a T1 person playing at being their own pancreas, or a T2 attempting to eat in a way which helps their wonky metabolism this stuff really matters.
From a carb-counting type 1 perspective the proposed changes are also incredibly inconvenient. This fatuous obsession with the display of 'sugar content' means that prepackaged foods will, most likely, no longer display total carbohydrate content per portion, certainly not on the front of the packs. Sainsbury's made this change some time ago adopting a 'traffic light' system and it bugs me every time I need to eat something of theirs. I find myself scrabbling around on the back of the pack for the 3.5pt 'per 100g' details then have to fish out a calculator and endure some mathematic acrobatics to evaluate what my portion of a 326g pack will end up being in terms of carbohydrate. And it used to be just written there in big letters 'per serving'.
Of all the groups of people in the UK with a borderline obsessive interest in what food contains, the ones who stand with furrowed brow in supermarkets poring over pack labelling smallprint more often than perhaps any others are those living with diabetes. This initiative *could* have made our lives easier, it could have included GI indications as standard, and scored total carbohydrate as a proportion of Guideline Daily Amounts so that people went easier on carbs generally. Who knows - that could have saved 1000s of people from developing T2D in the first place if their metabolisms are already beginning to struggle. Instead we are stuck in the same old rut of sugar=bad, fat=bad, carbs=good which just isn't helping anyone.
I await next summer's pack designs with a heavy heart.
Monday, 22 October 2012
The Most Annoying Person I have Learned to Love...
The day I lost my car... I became an avid pedestrian. Every local place became THE place to go for any goods and services. I really didn't want to lose my car, but the many months of being sick and at home, on leave from work and with no paycheck, left me struggling to make ends meet -- and well, car payments were not a priority. I let the car go.
Then shortly thereafter, I was diagnosed with type 2 diabetes. November 17th, 2009.
I thus began to get acquainted with a certain place a lot more often than I would have liked. A certain pharmacy. God, I hate pharmacies. I hate their smell, I hate their lights, I hate the waiting... and the lectures you get every time you get your prescription refilled as if you hadn't heard them before for like the billionth time. I've also never cared for the chit-chat. You know, the chit-chat cashiers always give you when you're ready to go. I'm sort of this anti-social who just wants to grab the crap she needs, and be on her way. No eye contact, no talking... bah humbug.
But, alas, there was Sally. (Sally is not her real name.)
Sally loves and loves to talk. Sally is very social. Sally always has something to say, and engages well with customers. Sally loves talking a little too much with her customers. I think she may have even gotten a bit in trouble for it before. It's not easy to leave Sally's side, by the register. Heck, she sometimes even comes over to you while you're in the isle to talk to you while you shop! She's always full of stories -- about the weather, about how things used to be in Ames, about her cat, about how things used to be in her hometown, about what's on sale, about what the best and most addicting snacks are, about her younger years when she used to have a career in social work, etc. Needless to say, Sally is very annoying.
Some days, when Rod and I used to go into the pharmacy together, we'd find ways to try and avoid Sally -- especially if we were in a hurry. Sometimes, we'd just want to shop in peace. Sometimes, we might have even gone to a different place altogether. But... in Iowa, politeness reigns. If we failed avoiding her, we'd still listen to Sally. Conversation began to get so involved... that now we'd be telling Sally our own woes.
Sally knew when I had no job or when I was underemployed with few hours, or when we were sick; when we had many, many struggles. Sally has often given us career advice, and even advocated for us.
In 2010, a devastating flood of epic proportions (the last of it's kind seen 500 years ago), hit Iowa. It affected the resources and properties of many folk. Our town lost a lot of water mains and pipes, and the water supply became contaminated. The advice was: purchase water, and if you're poor, please go to these local water dispensing sites we've set up. The problem was the water dispensing sites were SO far away, we couldn't get to them. Buses weren't going by certain areas either, because of flooding. Rod and I bought what little water we could, but then had no money left over for actual food. (And you know, with type 2 diabetes that's being treated with only diet, that's a rough ride... you have to seriously mind your carbohydrate consumption and you just can't survive on ramen noodles like someone else with a working pancreas could.)
I don't recall why we were at the pharmacy that day... but Sally asked about our day, and how we were faring with the floods, and well... we told her our woes, as had become usual. Sally, as it turns out, had been worried about us. Sally took us to the Red Cross -- Sally got us more water, and Sally took us to the supermarket and bought us food. Sally had endeared herself to us. Her quirky little self got into our hearts. She still, would sometimes, annoy the crap out of us... but our appreciation for her glossed over all that stuff. The stuff of being ourselves, squeaky wheels and all.
I don't believe in a god... and I don't believe that 'god' is love. I believe that LOVE is God. I believe WE are 'God' to one another, when we are in need, and our humanity calls... and we respond with love. And that day, when we needed her most, Sally WAS 'God.' Sally helped us see another healthy tomorrow... and not struggle for today. Sally was also... our advocate. Sally KNEW we had type 2 diabetes... Sally RESPONDED to those needs. (WE can be patient advocates to ANYONE with a chronic illness, with their needs, ANY given day of the week. The opportunities are everywhere. Look for them. THIS is also part of advocacy. Being the glue that connects everything... when all else has failed.)
Now... about a few weeks ago, I started noticing something wrong in my daily trips to the pharmacy. I really didn't see Sally as often, anymore, and she didn't seem as chatty as her usual self, anymore either. She seemed tired, and I thought to myself, "She looks like she's aging pretty fast; she looks a lot older than she was a month ago." (I didn't say anything.) I really had begun to MISS my daily encounters with Sally, and that daily inconvenience of having to stop and talk to her... while in a hurry to God knows where. "Maybe she's just cut back on hours," I had wondered... or maybe she's got a second job... or maybe she was spending more time with visiting family. (She always spoke fondly of family far away -- or with annoyance -- depending on who the family member was. lol)
But today, walking home from work, I heard a voice yelling at me from a block behind "Why are you walking in such a hurry?! I can't catch up with you!" I stopped, and turned around. I saw it was Sally... and I got a little annoyed that I had to stop, and wait for her... It had been a pretty tiring day for me, and my carpal tunnel was worse for the wear. Sally lives a block from where I live, and she wanted to chat while we walked. Fine, I could entertain this.
She asked me about ME, first. How I was doing... how Rod was doing. How we were coping along with life. She pointed to her new hair cut... and how she wanted it shorter, for it's getting so fine these days, it's harder to style. I don't really care, but I politely listen anyway... (Ever the eternal Oscar the Grouch.) Then she gently eases into the topic... The chemotherapy has been really hard... and Sally can't manage it anymore. I am one of the special, chosen people in her world, that she has decided to tell... and no one else. Sally only has 4 months left to live.
I politely listen... offer my company... offer to spend time with her when she's stir-crazy at home, if anything. Sally can't drive anymore, which is just the same... because honestly, I still don't have a car. We can ride the bus together, she says. It'll be good. It'll be fun.
I offer to walk her all the way to her place, but she declines. I give her my cell phone number. We say our goodbyes, and I go home. I reach the bathroom, and undress. I break down and cry, and cry... and cry...
I don't know Sally's real name. I've never asked.
Then shortly thereafter, I was diagnosed with type 2 diabetes. November 17th, 2009.
I thus began to get acquainted with a certain place a lot more often than I would have liked. A certain pharmacy. God, I hate pharmacies. I hate their smell, I hate their lights, I hate the waiting... and the lectures you get every time you get your prescription refilled as if you hadn't heard them before for like the billionth time. I've also never cared for the chit-chat. You know, the chit-chat cashiers always give you when you're ready to go. I'm sort of this anti-social who just wants to grab the crap she needs, and be on her way. No eye contact, no talking... bah humbug.
But, alas, there was Sally. (Sally is not her real name.)
Some days, when Rod and I used to go into the pharmacy together, we'd find ways to try and avoid Sally -- especially if we were in a hurry. Sometimes, we'd just want to shop in peace. Sometimes, we might have even gone to a different place altogether. But... in Iowa, politeness reigns. If we failed avoiding her, we'd still listen to Sally. Conversation began to get so involved... that now we'd be telling Sally our own woes.
Sally knew when I had no job or when I was underemployed with few hours, or when we were sick; when we had many, many struggles. Sally has often given us career advice, and even advocated for us.
In 2010, a devastating flood of epic proportions (the last of it's kind seen 500 years ago), hit Iowa. It affected the resources and properties of many folk. Our town lost a lot of water mains and pipes, and the water supply became contaminated. The advice was: purchase water, and if you're poor, please go to these local water dispensing sites we've set up. The problem was the water dispensing sites were SO far away, we couldn't get to them. Buses weren't going by certain areas either, because of flooding. Rod and I bought what little water we could, but then had no money left over for actual food. (And you know, with type 2 diabetes that's being treated with only diet, that's a rough ride... you have to seriously mind your carbohydrate consumption and you just can't survive on ramen noodles like someone else with a working pancreas could.)
 |
| Local Target store's parking lot, during the floods of 2010 |
I don't recall why we were at the pharmacy that day... but Sally asked about our day, and how we were faring with the floods, and well... we told her our woes, as had become usual. Sally, as it turns out, had been worried about us. Sally took us to the Red Cross -- Sally got us more water, and Sally took us to the supermarket and bought us food. Sally had endeared herself to us. Her quirky little self got into our hearts. She still, would sometimes, annoy the crap out of us... but our appreciation for her glossed over all that stuff. The stuff of being ourselves, squeaky wheels and all.
I don't believe in a god... and I don't believe that 'god' is love. I believe that LOVE is God. I believe WE are 'God' to one another, when we are in need, and our humanity calls... and we respond with love. And that day, when we needed her most, Sally WAS 'God.' Sally helped us see another healthy tomorrow... and not struggle for today. Sally was also... our advocate. Sally KNEW we had type 2 diabetes... Sally RESPONDED to those needs. (WE can be patient advocates to ANYONE with a chronic illness, with their needs, ANY given day of the week. The opportunities are everywhere. Look for them. THIS is also part of advocacy. Being the glue that connects everything... when all else has failed.)
Now... about a few weeks ago, I started noticing something wrong in my daily trips to the pharmacy. I really didn't see Sally as often, anymore, and she didn't seem as chatty as her usual self, anymore either. She seemed tired, and I thought to myself, "She looks like she's aging pretty fast; she looks a lot older than she was a month ago." (I didn't say anything.) I really had begun to MISS my daily encounters with Sally, and that daily inconvenience of having to stop and talk to her... while in a hurry to God knows where. "Maybe she's just cut back on hours," I had wondered... or maybe she's got a second job... or maybe she was spending more time with visiting family. (She always spoke fondly of family far away -- or with annoyance -- depending on who the family member was. lol)
But today, walking home from work, I heard a voice yelling at me from a block behind "Why are you walking in such a hurry?! I can't catch up with you!" I stopped, and turned around. I saw it was Sally... and I got a little annoyed that I had to stop, and wait for her... It had been a pretty tiring day for me, and my carpal tunnel was worse for the wear. Sally lives a block from where I live, and she wanted to chat while we walked. Fine, I could entertain this.
She asked me about ME, first. How I was doing... how Rod was doing. How we were coping along with life. She pointed to her new hair cut... and how she wanted it shorter, for it's getting so fine these days, it's harder to style. I don't really care, but I politely listen anyway... (Ever the eternal Oscar the Grouch.) Then she gently eases into the topic... The chemotherapy has been really hard... and Sally can't manage it anymore. I am one of the special, chosen people in her world, that she has decided to tell... and no one else. Sally only has 4 months left to live.
I politely listen... offer my company... offer to spend time with her when she's stir-crazy at home, if anything. Sally can't drive anymore, which is just the same... because honestly, I still don't have a car. We can ride the bus together, she says. It'll be good. It'll be fun.
I offer to walk her all the way to her place, but she declines. I give her my cell phone number. We say our goodbyes, and I go home. I reach the bathroom, and undress. I break down and cry, and cry... and cry...
I don't know Sally's real name. I've never asked.
Saturday, 20 October 2012
A1c apprehension and feeling a little deflated
I have an appointment on Monday to have bloods taken for my annual review a week or so later. As is often the case the mere hint of an A1c on the horizon has been enough to play havoc with my blood glucose levels over the past few weeks. Coming down with a cold hasn't helped either.
This time last year I was at a bit of a turning point. I had tried as hard as I could to improve my levels on MDI, and still felt there was improvement to be made. That review was undertaken at the hospital, and having discussed the ongoing challenges I was trying to tackle, the Registrar agreed that an insulin pump was a good option. I recognise that I am extremely fortunate to attend such a pro-pump clinic and after a few more appointments and a bit more prep, I was pumping before Christmas.
Regular readers (your gritty determination astounds me) will know that my journey towards an insulin pump was not entirely straightforward. I spent a great many years resisting the idea each time it was mentioned. Approaching a year into my pump experience I have just done a d-geek 'compare and contrast' exercise that convinces me more than ever of my position on the OCD spectrum - partly because it annoys me so much to have a key period of MDI results missing due to an *ahem* administrative error (I deleted them from one place before checking the place where I thought I'd copied them). I put together seven months worth of BG results side by side, matching 'tricky' periods like Christmas and holidays. I then examined them for a range of markers - BG average, SD, FBG in range, numbers of highs, numbers of lows and so on.
Without going into the minutiae (I appreciate I have to at least make a gesture towards allowing you to retain your will to live) the truth is I'm a bit deflated by the results. Since moving to the pump they are, in some ways, better than on MDI - but not really by very much. And if I'm honest I was hoping for the same transformations to my results that I'd seen in other people. People whose MDI skills I hugely respect, whose lives are busy and full of nice varied (and occasionally eyebrow raising) meal choices. People whose A1c's fell by a significant margin after a short time on insulin pump.
The trouble is I should be perfectly happy. My meter averages suggest that my A1c will be somewhere in the high 6's. To be disappointed by that seems ridiculous, but my last MDI result was 6.3. It is true that I'm having slightly fewer 'waffy' moments these days (thanks Dave!) but I've also had more readings in the 20s than I can remember thanks to multiple set failures which at one stage seemed to be happening fortnightly.
I still believe the pump is working for me - and having changed to Silhouettes a few weeks back I've not had a failure since - but by now I was hoping to have this whole thing sorted and be cruising along with more stability and less goalpost chasing.
I'll let you know what the result is when the A1c jury comes back in.
UPDATE: #teamsmug
This time last year I was at a bit of a turning point. I had tried as hard as I could to improve my levels on MDI, and still felt there was improvement to be made. That review was undertaken at the hospital, and having discussed the ongoing challenges I was trying to tackle, the Registrar agreed that an insulin pump was a good option. I recognise that I am extremely fortunate to attend such a pro-pump clinic and after a few more appointments and a bit more prep, I was pumping before Christmas.
Regular readers (your gritty determination astounds me) will know that my journey towards an insulin pump was not entirely straightforward. I spent a great many years resisting the idea each time it was mentioned. Approaching a year into my pump experience I have just done a d-geek 'compare and contrast' exercise that convinces me more than ever of my position on the OCD spectrum - partly because it annoys me so much to have a key period of MDI results missing due to an *ahem* administrative error (I deleted them from one place before checking the place where I thought I'd copied them). I put together seven months worth of BG results side by side, matching 'tricky' periods like Christmas and holidays. I then examined them for a range of markers - BG average, SD, FBG in range, numbers of highs, numbers of lows and so on.
Without going into the minutiae (I appreciate I have to at least make a gesture towards allowing you to retain your will to live) the truth is I'm a bit deflated by the results. Since moving to the pump they are, in some ways, better than on MDI - but not really by very much. And if I'm honest I was hoping for the same transformations to my results that I'd seen in other people. People whose MDI skills I hugely respect, whose lives are busy and full of nice varied (and occasionally eyebrow raising) meal choices. People whose A1c's fell by a significant margin after a short time on insulin pump.
The trouble is I should be perfectly happy. My meter averages suggest that my A1c will be somewhere in the high 6's. To be disappointed by that seems ridiculous, but my last MDI result was 6.3. It is true that I'm having slightly fewer 'waffy' moments these days (thanks Dave!) but I've also had more readings in the 20s than I can remember thanks to multiple set failures which at one stage seemed to be happening fortnightly.
I still believe the pump is working for me - and having changed to Silhouettes a few weeks back I've not had a failure since - but by now I was hoping to have this whole thing sorted and be cruising along with more stability and less goalpost chasing.
I'll let you know what the result is when the A1c jury comes back in.
UPDATE: #teamsmug
Thursday, 11 October 2012
What Patients Want From Their Clinicians...
The time I spent at Medicine X really got me thinking more in that direction, and contextualizing my vision. Some of these might seem like basic tenets, but others are quite 'revolutionary.'
When I advocate, I feel I usually do so, subconsciously, from some of these starting points... and I suppose they could apply to just about any other health condition. These are what patients want from their clinicians:
To Be Afforded Humanity... With:
- Respect and Freedom: As a partner in a journey of self discovery. An equal who is allowed the freedom to disagree, respectfully, and to make a different (informed) choice from what the provider would have chosen. Not as a 'civilian' kept under the inflexible 'regime' of the provider, nor as a subordinate, ignorant layperson, or petulant child.
- Dignity and empathy: As potential mothers, fathers, daughters, sons, sisters, brothers, significant others; people with potential hopes and dreams, fears and anxieties, just like them. Not as cold hardware to be tested, and prodded.
- Encouragement: As persons in need of perspective, and hope, from those who have the positive power to guide us into better health. Not recrimination, or scolding, whenever we 'fail' at meeting a goal.
- Acknowledgement: As partners deserving of their full attention, concern, praise or recognition. Not ignored when we present our health concerns, or when we reach an important milestone in care, or when we work hard to achieve goals. It is, sometimes, incredibly hard to jump through some of the hoops and obstacle courses which you demand of us... so please, give praise and positive feedback when we achieve them!
To Be Afforded Effective Communication... With:
- Patient Education: As partners fully capable of learning, understanding, and being challenged and tested, we deserve to be taught about our health conditions, and how to manage them, either by our clinicians, or by referral to those who can properly educate us and guide us into better health choices. There will be levels of education which each patient can handle, but we can all handle something. Not being told 'you have x condition,' and sent on our own, with nothing else to cope or fight back.
- Access to our data: As patients, and persons responsible for intimately managing a health condition, we should be allowed to know where we stand, with truth and honesty. Not to be left in the dark about one's condition, and progress... with only the provider being privy to the facts.
- Proper Feedback: As patients needing guidance, at times when we may not feel safe making our own decisions, by returning our calls, e-mails, or messages, promptly. Not by relegating our most important concerns to other, less informed health assistants or personnel, nor by ignoring our efforts to contact you. If you openly make yourself available to patients, please honor that commitment.
- The whole story: As partners and patients who need ALL the information (and proper diagnostic testing) when it comes to choices for treatments, medications, and tools. Not being limited to a clinician's predilections, or the predilections of the company that might be paying them to promote certain tests, procedures, drugs, or tools. [We will gladly listen to your predilections (and sometimes choose them), because after all -- you are the medical professionals -- but you must understand that we are the experts at living with our condition, and need ALL the variables to be able to make informed decisions that might impact the fate of our future health, and our families.]
To Be Afforded Quality Care... With:
- Continuous Education: As patients receiving exclusive care from a clinician or provider, we expect that they keep on top of new emerging technologies, new research, new data, and new approaches to managing illness. Not to take the minimal continuous education courses, and keep practicing on potentially outdated methods from when they first graduated medical school, which could fail to improve a health condition, or even make it worse.
- Embracing the researching patient: As partners, we expect to be embraced with respect when bringing in new data that can be studied, together, as a team. Not being chided for doing 'online research.' Medical research is growing by leaps and bounds, so it would be impossible for a provider to keep on top of all the information on their own... so why not partner up? We could solve a puzzle together, rather than 'against' each other. This is not about who has the diploma; it's about who ultimately gets to live with the decisions.
- Referrals to Specialists: As humans who know and understand that not everyone has all the answers and information to everything, and that sometimes it's best to embrace those who may provide additional insight or more specialized care. Not negating, out of ego or greed, the chance to expand one's medical team and "think tank," in order to find positive answers to puzzling health problems.
- Committed Advocacy: As advocates for one another, by being our strong voice to health insurance companies, government, and especially the media, or those who might be ignorant to our condition, and thus seek to curtail our needs, and cut down our most essential and basic of services, remaining true to the Hippocratic Oath. Not by remaining silent to our needs, or cowering to the all-mighty dollar, because a businessman, with no medical knowledge, coerced you.
For as many things as can be said about the healthcare field, and as much as times may change, I don't feel many are more important than these basic pillars, rights, and expectations. These are very essential, basic principles that we can all embrace and pursue in our futures. Often, we as patients can be difficult as well... and there should be some mutual expectations of cooperation, trust, and respect as "partners" and not subjugates. As the "Healthcare Street" is usually kept as a "One Way" road, I throw these out there as a sort of Patient's Manifesto of Rights and Expectations.
Monday, 8 October 2012
Finding My True Hope: My Adventures at Stanford Medicine X
This is the fourth of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-)
Patients learn to develop a strong voice. We have to... There are a lot of other voices, and interests, competing to be heard, and some, outright wanting to talk right over us. So, often times, a patient rises up above... and becomes an advocate: one who learns, and becomes an expert in their condition, as well as teaches others to self empower themselves, and keep going. As a part of that, it follows that the advocate will also seek to change their environment, change minds, and change the system as a whole. In that way, we're like a computer virus, really. We will never stop until we've re-written it all.
Despite this same mission, advocacy comes with different voices, and we all get to choose that voice. I suppose... Though, when you have lost someone you love to chronic illness, I don't think you have much of a choice in what your voice will be. If you've worn gloves to help prevent infection for your father's in-home dialysis treatments... then, well... you no longer wear gloves much, if at all, when it comes to advocating for his needs, or the needs of someone else to follow in his journey.
This might make us seem a little emotional, a little "Type A personality," a little pushy, a little obsessed, and perhaps... a little ANGRY.
So, I don't want my dear readers to assume the worst from my Day 2, at Medicine X, either about myself, or about the conference. The reality is that my exchange on Day 2 is what makes Medicine X so unique, and wonderful, and freeing. Why, you ask? Why is someone talking down at me such a freeing thing?
Well, the answer should be self evident: because I was allowed to talk back. Yes, I, THE patient... was allowed to have a conversation, to contest or refute, and to make a point. And for as much as I love other conferences, you're not going to find that at a TED talk.
You don't need anyone to talk AT you -- you're an adult, and not a child. You're a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldn't even be any medicine without you... for YOU are the patient. And throughout MedX there were all sorts of folks expressing their various concerns, and input -- from Susannah Fox's now famous 'That's my research, and that's not how I chose to interpret my data,' to your regular advocate questioning potential 'overquantification' and privacy issues, to well, my now famous 'comment.'
Medicine X is not a place for people to be 'perfect' -- everyone will have their biases, or their ignorance, or their differences of opinion or data interpretation. This is in no way a 'bad' reflection of the people who organize Medicine X, or of any of the participants, speakers, or guests, really. Nor is it a bad thing, at all. Medicine X is a place to have a CONVERSATION... and conversations bring outcomes, and education. Which brings me to...
Day 3: The Doctors of Tomorrow... Today
"Physicians are no longer the sole gatekeepers of validated health information ... The role of providers is evolving almost as quickly as technology. Value is no longer just knowing the right answers, but asking the right questions. And specifically, asking the right questions at the right time, the right place, to get the desired outcomes ... We are witnessing the evolution of value from content to context." -- Bassam Kadry, MD, Kadry Foundation, Stanford University, on the process and the whys of looking for new startups, and emerging technologies.
One of the most precious things I took away from Medicine X is that there are also other types of advocates: clinician advocates. The people who provide you with medical care, also tired of the state of affairs of their industry, and wanting to change their OWN landscape. Clinicians who understand that they are often, patients themselves. Or moms. Or voices for change, seeking to change the minds and views of their fellow peers, and embrace the new face of medical care. Doctors who understand that they no longer hold a monopoly on medical data.
Yes, that's right.
Just like you and I... people who want to see change happen in how medical data is dealt with, how people are handled, how we all benefit from the system, and how well we all LEARN and make decisions together -- there are many, many, invested clinicians out there, who want to work hard to change the system. (And many of them work in boards, and foundations, who make conferences such as Medicine X happen.)
In the beginning, I thought "well, Medicine X is a conference about technology, and the bettering of medicine and patient outreach through technology..." but I was wrong. You see, it isn't just that... It's a lot more than that. Medicine X is a REAL coming together of PEOPLE: patients, clinicians, researchers, academicians, innovators, programmers and silicon valley entrepreneurs, investors, etc. People with various 'hats,' who make a giant think tank (and without all the noise in the middle from all the bureaucratic machines), and embracing their most creative self, seek to DO something about the problems... WITH technology. That's all it is. Thinking outside the box, with the new tools we have... and some cool music, and lights. :-)
And it was so much fun!
There were many sessions, some very hands on, and some going on at the same time in separate rooms, and I kind of wish I could have cloned myself to go to all of them. But hey, that's the beauty of technology, right? I learned about some of them through people's tweets, or through people's blogs... or through videos. Couldn't have done that as efficiently in 2002.
My mind was refreshed and renewed with the beauty of other people's minds, and ideas... and it will be, for years to come, thanks to livestream. (If you haven't caught on, I have linked every "Day" subheading" to it's corresponding livestream link.)
I love an analogy put forth by Esther Dyson (who spoke to me, and about my little comment, at Med X -- and it was quite an honor, really...) in which she discusses the breaking up of AT&T by the government. In essence, when AT&T was broken up, it really didn't fix the problem -- it only created a handful of other telephone companies, with (arguably) similar power. Instead, what really brought these companies to their knees was, what? NEW TECHNOLOGY. The wireless phone. Or otherwise, changing the rules. You take away their monopoly of data, and you get to redo the system.
It'll be much the same with the medical industry. When we get together, and embrace the tools before us -- and how we tackle medical care and patient approaches -- we will get to rebuild that WHOLE puzzle, the way we wanted to from the beginning. The future is now, really. It's inevitable.
... And in case you want to know, the speaker who I addressed with my little 'comment' was very receptive, and very polite. I am sure he will choose his methods more wisely, next time. (No, he was not an evil troll. Please forgive him. I have.)
So... if I had to sum up my time at Med X, I could tell you that:
- I was a lost villager...
- Who found herself accepted for her self quantification...
- And hence, found her patient voice and courage,
- Leading to a true HOPE in her advocacy efforts.
I will try to share more, as I have time, on all the various technologies I learned. Maybe even arm wrestle someone into a guest blog post, or something. :-) But I want to personally thank everyone... for taking the time to read through my various blog posts, and ramblings. My 'life at Med X observations,' if you would.
I may be the angry woman who writes about diabetes, but you folks make me the advocate that I am. I am indebted to all of you, and the wonderful people who gave me the opportunity of a lifetime to be a part of something big, at an institution such as Stanford University.
I will not... not ever... not soon. Never forget. ;-)
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