Diabetes Blog Week Day 6: Diabetes Art

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!


I've generally steered away from this as a wild card before, but this year I actually had an idea about what to do! Now, I'm not particularly creative, so my contribution to today's topic is going to be some songs that I associate with diabetes.

First up is Think Like a Pancreas:

I was fortunate enough to be able to go to FFL in Glasgow this year, and I had a fantastic time.  As part of the opening night Ollie Double, a parent to two children with diabetes, performed "Think Like a Pancreas" to the tune of "Walk Like an Egyptian", and it made me laugh so much. :)

Secondly, it's Turbulence by Bowling For Soup (or a bowl of soup as my mum calls them...)

I love this song, and it's got me through quite a lot, but it particularly rings true to me about diabetes.  It's the song that gets me through when I'm having one of those days (or weeks...) when diabetes is just not playing ball. That, and it's a beautiful song.

Finally, I had to include Pancreas by Weird Al Yankovic.

It just makes me smile, and I think our poor little pancreases could do with a bit of love ;) Also, it was my ringtone on my husband's phone for quite a while when we first started seeing each other. <3 br="">

Diabetes Blog Week Day 4: Achievements Big and Small

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)

I kind of feel like I answered this prompt yesterday, so I'm going to twist this one slightly, and talk not about something I've already achieved, but about something that I hope to achieve in the future.

I've written in the past about how I have issues with asking for and accepting help relating to my diabetes.  I am very open about my diabetes, and I'll happily talk about it til the cows come home, and I'll share experiences etc.  However, I have a weird...territorialness about my diabetes that I can't quite explain. I think it's partly due to bad experiences I had in clinic when I was younger, where it felt like I couldn't do anything right.  I have fairly severe issues with showing my BG logs to doctors because of this, since I feel like they're just going to point out all the things I'm doing wrong and criticise me (and this has happened more recently that I'd like to admit).  I don't want them to see that, and similarly, I often feel like I can't ask for help with things, because I think they'll just see all the errors and I'll feel like a failure all over again.

When I was at FFL, I went to Joe Solo's talk, and he talked about diabetes duvet days, and how it took him a long time to come to terms with the idea of having to tell people that he needed them, because to admit that he was having a hard time with diabetes felt like he was somehow failing.  That resonated with me so unbelievably strongly, and to hear someone say that was amazing, and to hear them turn round and say that it was *not* a failure was so inspiring.

I'm coming to the realisation that I am going to have to deal with these issues.  Not just for myself, but because Stuart and I want to start a family in the not-too-distant future, and I am very aware of how much monitoring and help I am going to need to do that. I'm going to have to get used to sharing my results, and accepting suggestions and learn not to see it as criticism but help. I want the healthiest start possible for our family, and the only way to do that is to work closely with my care team. And to do that, I need to learn how to ask for help, and accept that which is given. It's not going to be easy, but I have one hell of an incentive to try.

Diabetes blog week 2011: Awesome things

Awesome things - Friday 5/13: In February the #dsma blog carnival challenged us to write about the most awesome thing we’d done DESPITE diabetes. Today let’s put a twist on that topic and focus on the good things diabetes has brought us. What awesome thing have you (or your child) done BECAUSE of diabetes? After all, like my blog header says, life with diabetes isn’t all bad!


Well, this post would have been rather timely! On the 14th May 2011 I graduated from my PhD and officially became Dr Angie. It's taken a long time, and there have been more than a few bumps along the way, but on that day I finally reached the point I'd been aiming at for so many years.

The reason this post is particularly appropriate is that diabetes is the thing which set me off on this path. I've been diabetic since I was 4 years old. I have no memory of a life without diabetes; to me, this is "normal". I plodded along for several years, not really thinking much about the whys or the hows or the wherefores, just living life with diabetes. However, when I was about twelve, I started to wonder more about why I was diabetic - not in a 'why me??' way, but wondering what was it that was wrong with my body that made me diabetic.

I picked up a couple of books from the library (no easy access to the internet back then!), and started reading about the biology of diabetes. I found it fascinating. I loved learning about all the things a pancreas was supposed to do, and why mine didn't, and about my immune system committing treason, and on and on. It sparked an interest in science, and in investigating the world around me that has only grown since then.

I always said that I'd love to be a research scientist, and especially one involved in diabetes research. However, when I was at school I had no idea how the hell you actually got into that kind of career, and it wasn't really the kind of thing that people at my school aspired to. This was when my amazing biology teacher helped. She explained the different ways of doing it, and suggested school qualifications and later uni courses that would I would need. I took all the science classes I could in school, and when it came to deciding what we wanted to do after school, continuing in science was completely natural.

I did my undergrad at Glasgow Uni in Medical Biochemistry, which involved a year's work placement in Bedford carrying out human studies and an honour's project looking at insulin resistance in young sheep (yes, really...). I then decided to carry on studying, and was offered a PhD place at Cambridge, and jumped at the chance.

And four years later, here I am. I'm now officially a doctor, I'm working as a research scientist, and while I might not be working directly in a diabetes research lab, I'm in a lab that is studying related things, and who knows when I might end up in the future. Diabetes was the thing that kickstarted that love of science that led me here. I'm made so many wonderful friends through this, both through uni and in the places where I've lived while studying. I've had so many wonderful experiences, and I'm proud of what I've achieved.

For once, thank you diabetes!

Diabetes blog week 2011: Letter writing day

Letter writing day - Tuesday 5/10: In February the Wego Blog Carnival asked participants to write letters to their condition. You can write a letter to diabetes if you’d like, but we can also take it one step further. How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them. How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams? Maybe you’d like to write a letter to your child with diabetes. Or a letter from your adult self to the d-child you were. Whomever you choose as a recipient, today is the day to tell them what you are feeling.

This is a letter that I keep thinking I should write but I never actually have. Maybe now I've written it I might actually send it one day.

Dear Dr C.

You probably won't remember me, because I'm sure I'm just one of thousands of patients you've seen in your career, but you made a huge difference to my life, and I wanted to thank you.

I began seeing you when I was about 14, when I was still attending the diabetes clinic in the childrens' hospital. There were a couple of different reasons you became my endo at that point. I was due to transfer to the adult hospital when I turned 15, and this was part of the preparation for moving to the big scary world of the adult clinic. The other reason was that my control wasn't very good at that time. In fact, it was pretty damn awful, I have to be honest. I was on two injections of mixtard at the time, blood testing meters weren't quite at the same level as they are now, and I was going through a fairly extended period of burnout. I was always high in the mornings, no matter what I did, I always seemed to be high whenever I tested, I had no idea about how to adjust insulin (in fact, it wasn't even a subject that was ever broached, so I didn't know it was an option!), and it just seemed like it didn't seem to matter what I did, I'd always be high and I'd get yelled at when I went to the clinic. It wasn't rebellion, because it wasn't like I was deliberately not doing my insulin or eating things I knew were 'bad' for me. I just couldn't see any way for me to make things better, and that crushed what little motivation I had. It just didn't seem worth the effort if the effort gave nothing in return.

You were the first endo I've ever had who recognised what was going on. You set up regular meetings with me, you and a DSN where I went along for an hour once a fortnight and you taught me about managing my diabetes. I knew a lot of the science behind it, but you were able to fill in the gaps, like how I was probably high in the mornings due to hormones. You didn't judge me for things that had gone wrong, or high numbers. You were the first person to tell me that diabetes was *my* disease, that I was the one who'd have to live with it, and that I should be the once managing it. No-one had ever said that to me before, and it was kind of a revelation.

It wasn't all sunshine and lollipops. Burnout doesn't just disappear overnight, and although you encouraged me to keep going with the regular meetings at the adult clinic, when I got there they weren't interested. My appointments were once a year for maybe five minutes, I never saw the same endo twice, there was no continuity of care, and it seemed like the only thing they were particularly interested in was making sure I didn't get pregnant! I fell through the cracks, and I reverted back to the way I was before.

But you planted a seed, which meant that when I moved to Cambridge and attended the diabetes clinic here I *believed* my new endo when he told me I could do better. When they encouraged me to get back on my feet and start managing my diabetes properly, they built on that message that it was *my* diabetes, and that I was the best person to manage it. They helped me learn the tools to do that, put me on courses, got me a pump, and I began to see my results improve.

I don't think that would be possible without the help you gave me. You changed my attitude towards my diabetes, and that has changed my life, and for that you have my immense gratitude.

Variety is the spice of life? Not if you're diabetic...

I've had a week of absolutely shocking BGs. I had a bit of a cold, but no worse than others I've had, and colds don't normally affect me too much. This time, however, I was seeing the high teens at least once a day, even with constant testing and correcting and temp basals. I was starting to get really worried and considering getting in touch with my DSN, or possibly my liver doctor (since the last time my numbers went nuts like this it was a sign that my liver was under attack), when I woke up on Friday with a BG in range, and they stayed like that all day, without need for temp basals or anything.

It got me thinking. I've said before that one of the things that I find most frustrating about living with diabetes is the apparent randomness that creeps in and affects your numbers.

There are so many variables to consider when we see a BG that is higher or lower than we'd expect. Is it a one off, or is it a run of them? If it's a one-off, you start trying to work out why - did you mess up the carb count of a meal? Did you forget to bolus? Have you been doing exercise/sitting doing nothing? Has something happened to stress you out? Is it a bad set? Have you somehow managed to kill you insulin? Is there a bubble in the tubing? What about insulin absorption or the kind of food you had? If it's a series of highs/lows, then a whole other set of considerations come into play - are you getting sick? Is it hormones? Is it a change in the weather? Have you changed weight? What about activity levels? Is there a pattern or is it just random? Basal or bolus? And a myriad of other possibilities.

Then, if you spot a pattern emerging, you have to deal with it. Sometimes it's straightforward - you're rising every day after lunch, you know your basal is right at that time, so you increase your insulin at lunch and that sorts it out. But then there's the other tricky little buggers. The ones where you've notice that it happens when you eat pizza, or do a particular type of exercise, or have a stressful time at work or some such.

So you have to try and sort it out, and the way to do that (like in so much of diabetes) is through trial and error. You can talk to other diabetics to see what they do, you can try altering an insulin dose or use a temp basal, alter carbs, or the timing of bolus. There are so many options, and even within those there are yet more variables - you decide to try a temp basal but how much? and for how long? You try things, test to see how they're working, and then you tweak, or you try something else. It's the only way to really do it, but the cost of making a mistake can be so huge - you end up low or high, and maybe it's only a little bit and quickly sorted out, but then there's the time it goes really wring, and you end up with a low that just won't come up, or you end of with ketones, or something else goes wring and you end up sitting there feeling like crap and wondering why you even bother.

Someone once told me that trying to manage diabetes is like trying to do a jigsaw puzzle when the pieces keep changing, and it just struck me as so true. What fits one day might not necessarily fit another, and we have to do this every single day. Things that other people take for granted we have to think so much about. Going for a wander around town, going to the cinema, having a drink with friends, having a busy day at work, eating, exercising, and a million other things. We do this every day, trying to cover for a part of our body that's gone on strike, that should do this automatically, responding to changes in our body and tiny little signals and information in increments that we can't possibly hope to achieve.

And yet we do it. We soldier on, we do our best, and we go on with our lives and refuse to let this condition defeat us, and (most of the time ;)) we do it without complaining or asking for any kind of recognition, or turning into babbling wrecks rocking in a corner.

And you know what? I think that makes us pretty damn amazing.

Doctor Pillock and the Wonderful DSN

I had a pump review at the diabetic clinic on Monday. It went...not well. I apologise for the novel length of this post, but I want to get this out of my head.

I didn't see the doctor I normally see, which frustrated me a bit since Dr E knows all about my liver problems/steroids etc, and I find him really easy to talk to. But I've seen a couple of other doctors in the clinic and I've always got on well with them, so I figured it would be ok, I'd just have to do a bit of explaining.

Boy was I wrong.

So, to backtrack a little, one of the reasons I've been a bit worried about this appointment is that I had another seizure about a month ago. No idea what brought it on, I was ok, then realised I was hypo, checked my BG at 2.6, ate at least 40g fast acting carbs (20g first, then more when I wasn't coming up) and was actually *drinking a glass of juice* when I went down. No exercise, it wasn't hot, I hadn't been doing anything out of the ordinary, my BGs had been fine all day. I just dropped and couldn't get my BG up fast enough. Poor Stuart was the one who had to deal with it, and he was amazing - he heard a crash (I broke the kitchen table when I fell), saw me seizing, made sure I couldn't hurt myself, and called 999. A&E couldn't find anything wrong, so they sent me home (after 6 hours...). My theory is that it's something to do with my liver/steroids/insulin resistance changing as the damage to my liver decreases, but I can't know for sure.

Now, I was nervous when I know I was going to see Dr E, because having to explain that I'd had another seizure wasn't something I was looking forward to, but he's been really understanding about the last time and we had a long discussion about the seizure and my liver problems. Now that I was suddenly seeing Dr K, I wasn't sure how things were going to go. So when he asked how I was, I started to tell him about the seizure, which in hindsight may have been a mistake, because he immediately started interrogating me, and immediately put me on the defensive.

He asked me if I turned my pump off if I test and my BG is low. I said no, and he just looked at me. I explained that I'd never been told to do that, as it wouldn't have any effect for a while, and certainly not fast enough to treat a hypo. He looked at my basal rates and kept asking me questions and I felt like I was on the back foot the whole time, like I'd done something really wrong. He asked me three times if I'd spoken to any of the pump educators. Twice who changed my basal rates, and how I'd decided I needed to be on the rates I was on. Despite me saying several times that I'd been doing basal tests, he still asked me if I was doing 'carb-free' testing. He was particularly interested in my afternoon rates (when I have the peak of insulin resistance from the steroids), and when he asked when I'd last done a basal test, I said that I hadn't done the afternoon one in a couple of weeks, but that I'd done a morning one at the weekend, and an overnight one the previous week. And he wrote down 'no carb-free testing' on my sheet...

Yeah, by that point I was pretty pissed.

I feel that he looked at the numbers and that's all he saw. He didn't seem interested in listening to anything I had to say. In the first week that he looked at, I'd had six hypos. However, four of these were in the same day, and you know how you get days where sometime you just run low? Two of them were a hypo that wouldn't come up on that same day, so it was a hypo, treated, followed by a test 15 min later that was still hypo. Of the six tests, four of them were 3.8 or 3.9. I'll admit that I'm hypoing more than I'd like, but I'm testing and changing things, I'm using temp basals, I'm being careful not to overtreat hypos so I don't spike afterwards. This is the first time in six months I've been on the same dose of liver medication for more than a couple of weeks, and I know that has messed with my numbers.

He insisted that I speak to one of the pump DSNs before I left (I'd been in the clinic for two hours by this point, and it was after 5 pm), and I was so unsure of what the hell I was doing that I just agreed. I sat waiting for the DSN, and I was so angry I was close to tears. It's been a while since I've cried as a result of a diabetic appointment, and I was adamant I wasn't going to start now, but I really didn't know how I was going to cope with more chastising. Sarah, the DSN, came to get me and, well, she was lovely. We actually sat down and had a proper chat about everything, she actually *asked* what had happened when I had the seizure, and she looked at my logs and pointed out a few things that I could check or change, but said that overall I was doing exactly what they would suggest, and that she could see from my logs I was having less hypos than I was a few weeks ago. It was like a weight of my shoulders to hear that I hadn't been completely screwing up the entire time. She gave me her contact details and said that I could get in touch any time, even if it was just to have a chat about things, and really made me feel that, yeah, I was having a few more hypos than they would like, but she could see what I had been doing to improve things and she was happy with that. She saved that whole experience for me, and actually turned it into something productive.

It took me a couple of days to realise why I was so bothered about this. I have...issues...about guilt and diabetes, mainly stemming from appointments like this when I was younger. I went to lots of appointments where all I heard was that my HbA1c was too high, and that my control wasn't good enough and I wasn't trying hard enough, and being asked the same questions repeatedly because they didn't believe my answer. I went through my teenage years thinking that I couldn't do anything right because no-one told me that hormones mess with your blood sugars. I went through a fairly extended period of burnout because I couldn't see the point of testing - it was always high, and I couldn't do anything about it anyway, so why bother? (I am not condoning this by the way, it's just how I felt at the time).

I still have a small voice in the back of my head that occasionally pipes up and tells me that I'm "cheating" whenever I have a piece of cake, or a packet of crisps at something other than a designated snack time, or a piece of chocolate. It's taken me a long time to get to this stage, where I can mostly ignore it because I know that it's not always my fault when things go wrong, that I am trying. I'm not perfect, I'm the first to admit that, but I've put a lot of work into my diabetes management. I read, I talk to other diabetics, I (normally) have a good relationship with my doctor/DSN and will email and ask questions. I'm also quite independent with it - I won't contact the pump educators unless I have a problem I can't solve on my own. And my clinic is very much behind this approach of being responsible for your own care. They are always there if I need them, but they encourage us to be able to test, look at the results, spot patterns, make adjustments etc as we see fit. It's the whole point of things like DAFNE for crying out loud! And this doctor made me feel like I was a fool for doing this, that there was no way I could possibly be testing and making these decisions on my own, without the approval of someone from the clinic and this infuriated and upset me. (I was so close to pulling the "I have a PhD in biochemistry, I am not a fecking idiot", but I thought that might have been inappropriate). I think part of the reason I was so upset is that I have never been made to feel that way before in this clinic. I've seen three different doctors and several DSNs over four years, and they've never made me feel as small and incompetent as this doctor did in 15 minutes. He made me feel like it was all my fault.

I've been debating whether or not to actually post about this, but it's been eating at me for a few days now, and I think writing about it might help me to get it out of my system. I don't want to seem like I'm just throwing a tantrum, because I do feel a little bit like a child that's been told to sit in the corner and not touch anything, and I'm aware that my reaction might be to that feeling. I don't want to be one of those people who takes any kind of criticism by throwing a fit. The thing is, I don't think I am. I can deal with criticism, as long as it's constructive and I can see why it's happening. I can deal with a doctor saying that I've made a mistake, I can admit that. But there's something about the way this doctor treated me that just rubbed me the wrong way. Maybe if I felt he didn't just have a knee-jerk reaction to the word "seizure" and the fact that I'm on quite a lot of insulin because of the steroids. Maybe if I'd had an actual conversation or discussion with him instead of feeling like I was being interrogated and then talked at. All I know is that I've never walked out of an appointment in that clinic feeling like I did on Monday, and that included the first one where my HbA1c was too high, and I was still struggling on Mixtard. If it hadn't been for Sarah, I'm not sure what I would have done. He knocked all confidence in any ability to manage my own diabetes, and she gave it back (mostly, I'm still a bit...wary).

Positive attitude

I've had a few people say how much they admire my attitude in dealing with diabetes and AIH, and while I don't really feel that I'm doing anything special, I do try to be positive and just get on with it. Mainly because I think if I let myself get depressed and pessimistic and "woe is me" about things, I don't think I'd be able to deal with anything, and I refuse to let diabetes/AIH rule my life that way.

However, that doesn't mean that I don't have days where I get pissed off, where I wish it would all just go away, or at the very least behave itself, and I think that's ok as well, it's all part of the dealing process. I love xkcd in general, and when I saw this comic today, it really resonated with me, because it's so true.

In a completely random note I've just discovered that I actually have comments on some of my other entries! I do apologise for not responding, I wasn't being rude, I'd just figured that Blogger would send me email notifications if I received comments and apparently it doesn't...