Diabetes Blog Week 2013: Share and Don't Share

*blows dust off blog* I know I haven't updated this poor neglected blog in a while, but this week is 4th annual Dblog week, and I had such fun doing it last year I thought it would be a good way to get back into the swing of things. :)


Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

 I generally have a pretty good medical team - the DSN's are fantastic, and when I actually get to see my endo he's awesome.  However, I've had some issues with other doctors, and there's a couple of things I'd like them to see. Firstly, that diabetes is not just about numbers - there's a person, who's trying to live a normal life, and deal with all sorts of other issues, and juggle a chronic condition on top of it. Secondly, that diabetes doesn't always play by the rules. I might not fit into your little tick boxes and textbook definitions - that doesn't mean I'm doing things wrong or that I'm a "bad" diabetic.

When you look at my logs and you pounce on out of range numbers and demand an explanation, it makes me feel like I've failed, that somehow by not keeping all of my numbers in range, I must be doing something wrong. It's like being a child hauled in front of the head teacher. Instead, I would like some support, and encouragement.  An acknowledgement of the work and effort I put in to get these results.  Diabetes management isn't perfect. Life isn't perfect.  I would like you to see that, to ask how things are in general, if anything in my life has changed, if I'm having any issues with my diabetes management that I'd like to discuss.  There are so many things that affect my numbers, and insulin and food are only two of those.  When you focus on my logs and those numbers and don't see anything else, you miss all those other factors, and you can't help me.  You can't help me figure out that the reason I sometimes have highs on a Friday evening is because I get stressed out sometimes at lab meeting. You can 't help me decipher those patterns if you're not willing to look beyond the numbers to the person behind them.

In terms of things I don't want them to see? Well... there are many! The times when I wake up in the middle of the night and I'm low, and I don't even bother testing, I just grab some fruit pastilles from the jar beside my bed and go back to sleep (I don't do this all the time)... the times where I get so overwhelmed with carb counting something new or complex that I just take an instinctive stab in the dark...the weird things I do like add 35% extra insulin when I have a large amount of carbs (hey, it works for me).  So many things! Though I guess, if there was some forgiveness of out of range numbers and acknowledgement of life influences, I may feel less guilty about some of those things.

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Same song, different chorus

So I had my annual review at the diabetes clinic earlier this afternoon, and I'm sitting here feeling frustrated and angry.

I will start off by saying that in general, I really like this clinic: the DSNs are awesome, through this clinic I've been on a DAFNE course and moved from Mixtard (when I first arrived) all the way to an insulin pump, and my diabetes management has really improved.  However, I have one major grip with the clinic, and it's this: I never see the same doctor twice.

Usually, I find this mildly annoying, but no big deal. Then I had the appointment with Dr Pillock and it really threw me. I was so angry after that appointment, and I sat in that waiting room afterwards waiting to see the DSN feeling like a complete and utter failure.  I know that isn't true, and I generally don't feel like that, but now every time I go to that clinic, I sit in the waiting room not knowing which doctor I'm going to see, and I remember that appointment and how I felt, and I stress.  The last two appointments I saw a DSN (which was actually quite good) and a doctor who seemed very nice.  Today, one of the doctors I've seen before (and got on really well with) was in clinic, so I was hoping I'd get him, and instead I got a patronising *insert naughty word here*

He started off by asking me the same questions they always ask (while reading over my notes) we had the usual surprise that I'm not in regular touch with the DSNs *sigh*, and I asked about my HbA1c.  Turns out it's actually gone done a little bit, and is now 6.7%, which I was very pleasantly surprised by, as I was convinced it would have gone up.  The last three months covers our honeymoon and all the surrounding chaos and I felt that I was completely slacking in my diabetes management.  In the last month or so I've got back on track and really made an effort, and maybe that's what made the difference.  Regardless, I was pleased, but I think part of the reason that I'm so frustrated by today is that the rest of the appointment took away from that.

Anyway, I mentioned that I thought that some of the reduction in my HbA1c has probably been helped by the fact that my liver doctor is currently in the process of reducing my steroid dose, which he then looked up to see what had been written in my notes, and then proceeded to get confused as to whether I had stopped or not, and why I was on the dose I was on.  We then got into a slightly heated debate where he seemed to decide that I didn't understand any of it, stated that "we know what we're doing with prednisolone because we're endocrinologists," explained some of the tests I'd had in baby language, and started to suggest things they could do with my steroids.

At this point I was pretty much ready to bash him over the head with my Biochemistry PhD certificate and tell him that there was no way in hell I was letting him do anything to my steroid dose because I wasn't under his bloody care for that and he'd met me once.  *takes a deep breath and counts to ten* Instead, I explained, as calmly as I could (which, to be honest, probably wasn't all that calmly...) that I had discussed all the options with my liver doctor, and that we had decided on a course of action that we were both happy with. He scribbled something in his notes, and stopped pushing the matter.

I'm sorry, but I trust my liver doctor.  I've seen him every couple of months for the last two years, and I really like him.  He treats me like an individual, and he always discusses my options and asks my opinion.  He knows my case far better than some endocrinologist who has just looked at my notes for the first time and decided that he knows better.

Then he went through my last appointment notes, and asked if my basal rates were the same.  When I told him that they were considerably lower (about 40%, because of the reduction in steroids), he said that he didn't want to write all that down, and moved on...

I just...I feel that the appointments are worse than useless. At best, I get my HbA1c results, and check everything else is ok, and nothing else; at worst, I walk out feeling like this.  I don't get anything out of the appointments, and to be honest, I'm not even sure what I *want* to get out of them, but I know that when I have doctors like the one I have today, I don't want to ask questions, I just want to get out of there as soon as I can.  And that's not right.

I'm pondering emailing one of the DSNs at the clinic (since apparently I should be doing that anyway...*coughs*) and asking what the actual policy is in the clinic, and if there's any way I can make sure that I see the same doctor/group of doctors. I don't want to make an actual complaint, but I'm tired of walking out of the clinic feeling frustrated, and it's pushing me to do something about it. 

Any thoughts?

Hypo Awareness Week Part 2...

2. Other people's reactions to hypos

Over at Shoot up or put up, Alison blogged about hypo awareness week and asked "What would you make people more or less aware of about hypos?" This is the post that actually got me thinking about Hypo Awareness week, and public understanding of hypos in general.

If there's one thing in particular that I would change about friends and family's knowledge about hypos it's this:

Please don't panic if I say I'm low

Yes, hypos suck, and they feel like crap, but (usually) they're not the end of the world. The majority of the time, I feel low, I test, I treat and I move on. That's it. 

I once had a conversation with a colleague who had just returned from a first aid course, where, of course, they had covered what to do with a diabetic who is hypo (their answer was give them chocolate but that's a rant for another day). She'd come over to talk to me about it afterwards, and in the course of the conversation commented "you must be a really well controlled diabetic, because I've never seen you go hypo!"

After I stopped laughing at the idea that well controlled diabetes merely involves not ending up passed out on the floor at regular intervals, I pointed out that we had had entire conversations while I was low and she had no idea. Public perception of a hypo seems to be at the extreme end of things, and to be fair, the bad ones are probably the ones you hear about most often.  However, most hypos aren't like that. I usually don't tell people that I'm low, because the few times I have, they've generally panicked, and I don't want to deal with that at the best of times, even less so when I'm hypo. It would nice to just say "I'm a bit low at the moment, can you give me ten minutes to get my brain back into gear" and not have it be a huge Thing. 

While I'm writing this, I'm realising that I'm probably part of the problem! By not telling people when I'm low, they're not getting a change to see what a minor hypo actually looks like, so that they know when to help and when not to. Maybe one of the best things to come out of Hypo Awareness Week is just to get people talking about these things, and chatting to diabetics about what they actually want and need with regards to help when low.

Hypo Awareness Week!

It is Hypo Awareness Week this week, which seems to be a new thing, and I've had a couple of throughts knocking around my head about the subject in general. Part of the week is about educating healthcare professionals working in secondary care about hypos, what they might look like, what to do if you find someone hypo, etc, and it got me thinking about a couple of things, which I'm going to actually going to split into two posts, because I can ramble on a fair bit... ;)

1) Hypos in hospital

I've had two experiences of being hypo while staying in a hospital, and they were quite different from one another.

The first was while I was participating in a study.  The study part had ended, but I was hooked up to IV insulin, and they were continuing to monitor my blood glucose levels over night (part of the study protocol as I was instructed not to take my lantus the previous day).  I woke up at some point in the wee hours, and I knew I was low.  They had just taken a sample to test, and I was still in that sleepy/hypo groggy stage where I was deciding what to do when they came back and asked how I felt. I replied that I was pretty sure I was low, to which they responded "your BG reading is 2.8"

By this point I was fully awake, and ready to grab some skittles and just get on with it (as you do).  I knew I was low but it wasn't a particularly bad one, so I wasn't bothering that much, other than being slightly frustrated that I couldn't just get up and treat it.

The nursing staff, however, pretty much went into panic mode at this point.  They asked me what I wanted to treat the hypo (fair enough), so I asked for some juice if they had any.  They gave me a glass of orange juice and four biscuits, and then asked me if I wanted a couple of slices of toast and a cup of tea.  I drank the juice, ate one of the biscuits, and then explained (while hypo) that if I ate all of the stuff they were trying to give me, my BG would end up skyrocketing.

They were very nice, and very concerned, but oh man, it's so hard anyway to avoid overtreating a hypo without someone trying to force food on you! I was also surprised, as the study was diabetes related, that their night staff were not better educated on how to treat a hypo.

The second experience occurred while I was in short stay for a liver biopsy.  I'd had the biopsy, and was in the middle of the six hour bed-rest-and-observation period.  During this, they take your blood pressure and heart rate every 30 minutes to make sure you're not bleeding to death.  At one point, I'd just checked my BG and I was a little bit on the low side, so I'd had some jelly babies and was waiting to come back up.  The nurse popped in, measured my BP and heart rate, and stopped to comment that my heart was racing (I believe it was 135 bpm at that point...) She asked if I could feel it, and I explained that yes, I was aware of it and it was because my BG was low.  She looked at me and said "so I guess we should get you something to eat then?"  I said that I'd already had something, and said "ok" and left.

I'm in two minds about this.  I'd insisted on having my pump and meter and being able to monitor myself, as I had the last time, but they were meant to be recording things like BG etc.  It's part of the reason I said I wanted to manage my diabetes by myself, because I'm always vaguely terrified that I'll end up with someone who doesn't understand what's going and will do something wrong.  While I wanted to manage my own diabetes, they were still meant to be monitoring/recording data, and the fact that none of this occurred, and the nurse's lack of attention or concern about the fact that I was low (simple things like: how low are you? What have you taken? I'll check back in ten minutes) worries me, and did nothing to relieve any concerns I have about ending up unconscious in hospital with no control.

So I've had two experiences of being low in hospital, and they were pretty much opposite ends of the spectrum.  One was a panicked over-reaction, and the other was a worrying under-reaction.  As a result of this, I'm really pleased to see hypo awareness week, and I hope that it improves the way taht hypos are dealt with in these situations.

Diabetes Blog Week 2012: Diabetes Hero

Sunday 05/20 Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??

I posted last year about my admiration for parents of diabetic children, and my mum (and parents like her) will always be one of my diabetic heroes.

Today, however, I want to talk about another of my diabetic heroes - my lovely husband Stuart. I think it's easy to forget that diabetes affects more than just the people with it - it affects those around them as well.  In my case, as well as living with me and my diabetes, Stuart has done it while dealing with a fairly severe needle phobia.  When we first started dating, I was still on MDI, and we quickly figured out a system where I could warn him that I was about to do my injection (usually by unsubtly saying "hide!"), and he could look away. 

He was there while I went through the process of getting started on my pump.  He supported me every step of the way, even though the very idea of it freaked the hell out of him, because he knew that it was the best thing for me, and by extension, for us. 

 I've said before about how I am quite territorial about my diabetes management, and he lets me get on with my diabetes management on my own, and he doesn't tell me how to do things or judge what I'm doing.  He would never dream of telling me that I shouldn't have a piece of cake because of my diabetes.  He's listened to me rant and moan when I'm having a rough day diabetes wise, or when I've done something stupid like pull out a site.

And he has quite literally picked me up when I've fallen down.  I've only ever had two seizures in 23 years of being diabetic, and they happened about six months apart, both after Stuart and I were living together.  The first happened in a supermarket, and Stuart came to pick me up in A&E, and sat until the wee hours when I was discharged.  The second happened at home, when I went down in the kitchen (pulling a table down with me...) with Stuart in the next room. He called an ambulance, and stayed with me the entire time.  While there is nothing quite as horrible as waking up and realising that you've had a seizure, waking up with him next to me very calmly explaining what had happened and that things were going to be ok? That takes a lot of the scariness out of that scenario.  He waited in A&E with me again, and both times he took the next day off work to look after me.

He has taken me, diabetes and all, to be his wife, and there was even a line in both of our vows about how he picks me up when I fall down.  He is, and always will be, my big gorram hero. <3

Diabetes Blog Week 2012: Saturday Snapshots

Saturday 05/19 Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

I spent quite a while considering what to do for this post, since I didn't really feel I had a huge amount of photos to add this year.  I thought about using one of the wildcards, but then I decided to do something different.

Five weeks ago, I got married.  I'd decided beforehand that I was going to do  my best to make diabetes as small a part of my day as possible, and I pretty much succeeded.  My bridesmaid's had hypo treatment in their bags, my chief bridesmaid had my meter and related stuff, and I managed to keep my levels fairly stable throughout the day.

I use an insulin pump to manage my diabetes, and about a month before the wedding I got in touch with Animas and asked if they could send me a couple of sets with longer tubing, just so I had options on the day.  They sent me eight, four of each of the sets I use. I was very impressed!   worked with my dress maker to sort out where I was going to store the pump during the day, and he made me a pocket so that I could hide the pump, but still get access to it when I needed it.


So, to make this picture diabetes related: can you spot my pump? ;)

I said that I managed to keep my levels mostly stable throughout the day, and that's true.  I only had two stumbling blocks during the day; the 27.5 I hit before dinner (damn adrenaline - who'd have thought walking down the aisle would be so scary!), which came down nicely with a correction, and I dropped low in the evening during the dancing, at which point I used the very handy pick and mix we had set up for our guests to treat the hypo... ;)