Diabetes Blog Week Day 5: Tips and Tricks

Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

For some reason I thought I'd written a post about this before, but apparently not! 

By nature, I can be a bit disorganised, lazy and forgetful. so most of my tips revolve around helping me be organised without really having to think about it and making life a bit easier! In no particular order they are:

• I love these little bags of jelly beans for on-the-go hypo treatments. They're 10g carb each, they don't take up much space and they're individually packed so you can shove them in a bag/pocket whatever and they stay non-sticky and non-squished!

• I also love tiny boxes such as these really useful boxes for robust, sturdy hypo storage.

• I'm also a fan of having hypo stashes all over the house - next to my bed, in the kitchen, next to the couch - with a variety of treatments (little cans of coke, glucotabs, jelly beans or babies) so that I don't have to go far and have a variety options depending on the hypo.

• I also carry syringes with me rather than pens in case of pump issues - they take up considerably less space, I don't have to worry about insulin in the pen cartridge going off and it's more convenient.

• I also have a diabetes emergency stash at work, with everything I might need/break/run out of - I have spare sets, cartridges, hypo treatment, batteries, meter, strips, plasters and opsite - since it's the place I spend most time apart from home. I'm working on having a similar thing in the car.

• I like to have little "on-the-go" bags in my diabetes drawers (where all my stuff is kept) that I can just pick up and stick in whatever bag I'm using. They're just little food storage bags that have a couple of spare sets, some hypo treatments and a syringe. I also have larger ones that have a bit more that I can put in my bag for weekends away so I don't have to think too much about it.

• For help with carb counting we have some of these blackboard stickers on our fridge. One has a small table on it permanently with columns for "food," "weight" and "carbs" and then space at the bottom for total and per portion. This means I can just weigh things and stick the info up and then work out the carb while things are cooking. I also keep a calculator next to the scales, and a list of commonly made meals with carb counts.

• And finally, I have today randomly found out the Bayer contour test trip holders fit 5 fruit pastilles and fit easily into my pocket!

(Also, I swear, I'm not working for Amazon!)

Diabetes Blog Week Day 4: The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

So today's topic is on healthcare experiences. I wasn't really sure if I had anything to write about this, because I don't really know the answer to these questions, but to be honest, I think that *is* my frustration.

I'll be honest, I don't really feel that I get anything out of my normal clinic visits.  I get my HbA1c done, and sometimes other tests as well if it's an annual review. I get my feet tickled and my eyes checked, and things like that, and I know that these are important, which is why I go.

But I don't feel that I really get anything else.  I do my own reviews, and my own tweaks and experiments and changes, and I don't really feel I need any help with that - and I'm not expecting a HCP who's only looking at recent data to be able to give me any long term solutions as diabetes is, at it's heart, an ever-changing beast.  And the thing is, I don't *want* help with that - at the end of the day, it's my diabetes and I'm the one living with it. The one consultant I did see who was much more hands on drove me up the wall as he was very critical and would make huge changes based on a couple of days results, which very much tells me that I don't want that kind of relationship.

And 'm not saying I don't get *any* help - I've been through DAFNE training, I've moved onto a pump, and I'm using CGM (though self funding, because bringing up the possibility of funding got me a big fat no...) so they're there for the big things, and the medium things, like the checks.  But it's the little things that I feel I'm missing, and I don't even really know how.  I read about other people who have a great relationship with their diabetes team, and how they have these amazing appointments where they go in with a list of things and it's all very productive, and I'm just sitting there like "How?!" I don't feel like I can do that, because I generally don't have a list, and I feel like I just turn up, get test results, and have a quick chat and then go. 

I guess maybe I just feel that I'd like a better ongoing relationship, and I think a large part of that is that, at my clinic, it's a bit of a crapshoot who you see, so I usually see a different person every time and I get that it's not possible to make sure that you see the same person every time, but at the liver clinic I go to, which is ridiculously busy, I see one of two doctors, and so over the past five years there's a working relationship and trust that has built up.  I guess maybe it's just that I'm looking for, and maybe productive stuff would build out of that, but at the moment I'm not getting it.  I'm looking forward to reading other responses to this topic to see how other people feel about it!

Diabetes Blog Week 2016: Language and Diabetes

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

This is an interesting one for me, because I feel different ways about different words, so I'm going to take them into three batches:

The Good: Diabetic vs person with diabetes

This is something that I really don't care about, personally. I've been diabetic/had diabetes since I was four, I've grown up with it and it's part of me. I will refer to myself as a diabetic and I don't really feel anything negative or pejorative related to that. I don't feel that I'm being defined by it, it's just a descriptive term, in the same way that I'm short, Glaswegian, geeky or a scientist. To me, it's just another one of the many things I am.  I also lazy, and diabetic is just faster. ;)  However, I understand that not everyone feels this way, and it's something that people can feel quite strongly about, so I try to use PWD or person with diabetes whenever I'm referring to someone else and try my best o be respectful of others feeling on the matter.

The Bad: Checking vs testing

This is something that I feel relatively strongly about with regards to how *I* use the words, mainly because I think it does change how I see and react to blood glucose levels.  In the same way, I also try very hard to look at the numbers as data, and remove the words "good" or "bad" in relation to what I see on my meter - it's information that's helping me decide what to do next.  I spent a long time as a child and teenager getting beaten up emotionally by "bad" numbers on a machine, and I've said before how I think it led to a form of burnout or apathy towards my diabetes care, and I'm trying very hard to change that. Notice I said try ;) I'm better at it that I used to be, but it's still a hard mindset to get out of.


And the Ugly: Compliance

Now this, this is a word I feel strongly about, and I know I'm not the only one. I hate this word, I think it's a bullshit word used by lazy HCPs to dismiss patients who are either not meeting the targets set or not doing things the way the HCP thinks they should.  I think it's very easy to just label a patient as "non-compliant" without really going any further or asking the questions that should be asked - mainly why is the patient not meeting targets? Is there something else going on? Are the targets something set by the HCP in discussion with the patient?  (and if not, why not?) Does the patient need extra help or education? And a million other things that should be asked.  I went to so  many clinics as a teenager to be told "your HbA1c is too high, get it lower!) and made to feel like a failure, without anyone ever, ever suggesting anything to help.  Additionally, just because a patient is doing things differently doesn't mean it's wrong - maybe you could learn something from them! I've learned a lot from the DOC in terms of different ways of dealing with situations like exercise, spikes after meals etc, and I'm not afraid to try new things - if they fail, fair enough, tweak and try again, ore try something else - but I've heard of people who get labelled as "non-compliant"  because they don't just follow the textbook that their doctor is using.   It's a horrible, judgemental word, and I hope it gets drummed out of use.

Diabetes Blog week 2016 Day 2: The Other Half of Diabetes

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I was going to talk about burnout for this, since it's something I'm struggling with a little at the moment, but then I realised I don't really know what to say, and I think lots of people have posted about this, so I thought I'd talk about something a little different, and since the topic is the other half of diabetes, I thought I'd talk about *my* other half and his relationship with me and my diabetes.

So, my husband has a fairly severe phobia of needles, which he's had for a long time. And I'm not talking about the "oh I don't really like needles" (I mean, who does?) type of thing, but the passes out when having vaccinations, gets really queasy even thinking about them kind of phobia. So you can imagine that it's not easy then having to face that phobia on a daily basis.

He has a couple of other friends with diabetes, who had just moved away shortly before he met me. Now, we met online, and there was nothing in my profile about being diabetic, and it never really came up, until one day we were chatting online (before we'd actually met) and I mentioned something about blood sugars.  At which point, I realised I hadn't actually said anything about being diabetic at roughly the same time that he came to the realisation that I was.  And then he tells me about the needle phobia thing, and I wondered if that was going to be the end of things there and then. But we talked about it and he said that he had ways of dealing with it that he'd worked out with his friends, that mainly involved warning him any time I was going to be doing anything with a needle.

We've been together for seven years now, and there have been many diabetes related things for us to deal with. I was on MDI when we started dating, but have since moved onto a pump. I've started using CGM, and I had two seizures due to low blood sugar (one of which happened in our flat). I've had laser for retinopathy (that was fun. Not.) He's considerably less freaked out by my needles now, and he's had to learn all the "wonderful" aspects of living iwth diabetes that you just don't really *get* unless you're doing it, and it's been a learning process for both of us - I've posted before about how I'm usually quite private about my day to day diabetes care, and it's taken a while to be able to share that with him. He's learning when to offer help and when to just offer sympathy, when to let me vent and when to step in on my behalf. He knows where all the hypo stashes are, and how frustrating some diabetes professionals can be.  He's been to a diabetes conference, and is going to another one in June. I think it's opened his eyes to a whole other "normal", and he's I've learned that I don't have to do this alone. I can't imagine it's easy watching a loved one dealing with the ups and downs of diabetes, particularly those times when there's nothing you can do, and I'm always grateful that he's willing to go through this journey with me, both of us learning as we go.

Diabetes Blog Week 2016 Day 1: Message Monday

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? 

I don't think I have a particular message or theme that I try to get across in my blog, other than "you are not alone", which I think is common across a lot of diabetes blogs.  I've been part of the DOC for a long time now, starting on forums and gradually moving over to Twitter and Facebook, and blogs happened somewhere along the way.

For me, blogs continued the whole "wow, you too?!" thing that had begun in forums, and I loved being able to read about someone's story, particularly if we were going through similar things.  When I started, there really weren't that many blogs around, and most of the ones that were around were from the US. I thought that maybe I could offer a slightly different perspective coming from the UK, and I've been blogging on and off in one way or another ever since.

I keep coming back to the idea that I'm blogging to send a message, and I guess in some ways I must feel I have something to share, otherwise it would be a private blog, but I don't feel that I blog because I want to stand up and shout about something that's particularly important, it's more like I'm sat in a quiet corner in a bar telling stories about my experience. Hopefully some of those experiences will strike a chord with some people, and they may find something that helps them, even if it's just that other people have crappy days, and horrible clinic appointments, and also take joy in small things that no-one else gets if they don't live with diabetes.  I think I probably blog partly for myself, because there's something therapeutic about writing things down, and partly in the hope that I can maybe help someone else.

Diabetes Blog Week Day 3: What Brings Me Down

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)


Diabetes sucks.  We all know that, and I think most of us just sort of deal with it and keep going, because, well, there's not really much we can do about it.  We come up with ways to make it suck less, and that's for tomorrow's post, but there's also things that make it suck more, and I'm going to write about one of those today.

One of the things that brings me down is unhelpful doctors/nurses and other health care professionals.  I'm not talking about regular HCPs, the people who don't really have anything to do with diabetes.  While it is frustrating as hell when they ask stupid questions and downright terrifying at times if these people are responsible for your care, those aren't the ones I'm thinking about are the ones who are actually meant to be helping us - our DSNs and endocrinologists.

I've swapped endos recently, due to various factors and the way my clinic works.  The first time I met with my new one he seemed lovely - very enthusiastic and keen to help.  The two appointments I've had since? Not so much - in fact I cried after both of them, and I haven't done that in a while. 

I'm not really sure I can pinpoint exactly what was so horrible about the appointments, but in both of them I felt so utterly incompetent as a diabetic.  The first was rushed - he was running about two hours late, and was clearly trying to catch up, and I had a very hurried appointment which pretty much consisted of him telling me off, both for not contacting the DSNs for help (which I didn't feel I needed) and for not making changes as quickly as he thought I should.  The second was a longer version of the first, even though I pointed out that I had tried to contact the DSNs on several occasions and received no response, and a thorough going over of the previous two days of CGM data and wanting to make several changes based on that - oh and a criticism for being 7.3 (131)  an hour after a meal...

Oh, and my HbA1c? Is 6%

I walked out of those appointments, and like I said, I cried.  I just sat there and thought "what's the point?"  If I get criticised and told that I'm not doing well enough even though I work my arse off to get those results, then why bother?  I might as well just give up and not worry and get told off just the same.  If I get treated the same way with an Hb1c of 6 and one of 10%, then why the hell should I care? (Don't worry, I'm not giving up, I'm just explaining how I felt).  I sat there and I felt all those familiar thoughts come back that I had when I was a teenager and I just...gave up.  If it wasn't for the fact that I'm a bit older and wiser now, and a bit more stubborn in terms of not letting that bastard get me down, I could see appointments like those sending me on a fast track to burn out. 

Because if the people who are supposed to be helping and supporting you through the sucky condition just grind you down, then what chance do we have?  It wasn't even so much what he said, I didn't mind him suggesting changes, it was the way he did it.  The whole attitude that I was clearly doing things wrong, and every number out of range was explicitly my fault.  Who does that kind attitude help? 

Luckily, I have other support systems in place (which is tomorrow's post), but I worry about the people who don't, the ones who go into that office and come out feeling like I did and actually do give up.  Because it's hard to live with this disease and deal with all the crap that comes with it without fighting against the people who are meant to help as well.  It's just one of several things that brings me down about diabetes, but the thing that gets me the most is that it shouldn't be - your diabetes team should be one of the things that tries to make diabetes suck less, not more.

Diabetes blog week day 2: dream diabetes device

Today's topic is meant to be writing a poem, but I really suck at that, so I'm going to go for one of the wildcards.

I was initially going to do the short story (I'm sure Garrus* my pump has more than a few tales to tell...) but I decided to go for the dream diabetes device one instead, since I've had these thoughts knocking about in my head for a little while.

The prompt is this:

This continues to be one of the most popular DBlogWeek topics, so let’s have another crack at it! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, or anything else you can think of. The sky is the limit – what would you love to see? 

I wrote about this before a couple of years ago, when I said that I wanted a magic carb counting device (which I still totally want).  This time I'm dreaming of something different. You know what I want? I want some kickass software to connect all of my diabetes paraphernalia.
I want an app on my phone that will talk to my pump, to my cgm, to my glucose meter. One that I can easily add notes to, and search on the go.  I want to be able to pull up when I last had pizza, see what my blood sugar was before, how I bolused, and what the cgm trace looked like afterwards to help me decide what to do this time. I want to be able to look at the data on a computer,  and combine ir however I want to spot trends, and send it to my clinic. I want to be able to pull out my phone and check my cgm, or bolus without needing to pull out my pump.

That's what I want. I know there are apps and programs out there that do parts of this,  but I've never found anything that does everything I want (and I'm a demanding little bugger). 

So that's my dream diabetes device. What's yours?

* My pump is called Garrus for very geeky reasons relating to the fact that he's blue and calibrates my CGM... ;)

Diabetes Blog Week Day 1: Change the World

Today's prompt: Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

I've been pondering this topic for a few days, because there are plenty of diabetes-related issues that I am pretty passionate about, and have ranted extensively about - a small sampling includes, but is not limited to: diabetes myths (no, I didn't have too much sugar as a child, yes I can eat that...); pump access (while I don't believe everyone will get on with a pump, I believe everyone should be given the option); CGM access (ditto); and the word "compliance" (grrrrr...).  I don't really formally advocate for anything, but I was trying to think of something that I, personally, feel is important, and what it came down to is this:

Education.

I think that education is one of the most important things that a person with diabetes needs in order to best manage it  - we have a condition that requires daily decision making in order to prevent it from kicking us in the ass (and despite our best efforts sometimes it does that anyway!)  How can you make the best decisions if you're not informed?  I really feel that everyone who has diabetes, or cares for someone with diabetes should have access to an education course at diagnosis, and that information should be updated as necessary.

I think that everyone should be taught carb counting, and how to adjust their insulin if necessary.  I think that everyone should be taught how different factors can affect your blood glucose levels - alcohol, exercise, hormones, stress etc.  How these can make your blood sugars go up or down, and how to help manage the changes.  What to do if you're sick, or if you're hypo. 

I appreciate that when you're newly diagnosed this is a huge amount of information to take in, and I'm not suggesting that a newly diagnosed person gets handed a huge folder with all of this (!) but I do think people should be made aware that education is available, and encouraged to ask questions and find out more.  And I think education is just as important when you've been diagnosed for 10 years, 20 years, 50 years.  Information changes, medication changes, better ways become apparent, and newer technology makes life more manageable. 

One of the reasons that I feels so strongly about it is that I was that uneducated person for a long time. I was diagnosed in 1988.  I was put onto Mixtard, taught to carb count, how to test my blood sugar and inject, and that for exercise I should have some glucose tabs before it.  And for almost 20 years, that was it.  The information was never updated, no-one ever told me about things like MDI or how things like hormones might affect my BGs.  Instead, I went on doing the same things, even when those things were clearly no longer working, because I wasn't aware there might be other ways of doing things - I'd assumed (silly me!) that if there were new things that I should know, that my doctors would tell me.  I went to clinic, got told off for HbA1cs that were too high, and sent away again.  Rinse and repeat for long enough and you hit burnout and stop caring (or at least I did anyway).

Fast forward to 2006, I moved to Cambridge, learned about MDI, and found the DOC.  The DOC was a revelation for me, in many ways, but especially for opening my eyes to new information and better ways of doing things.  The idea that I could adjust my insulin, ways of dealing with exercise, insulin pumps, and so much more!  This was all new to me, and it sparked a fire to become so much more proactive about my diabetes management, with obvious results in my blood glucose levels and HbA1cs.  It taught me to question my doctors, to research for myself, and to learn enough about my diabetes that I could manage it (mostly!) successfully by myself.  I try and help, and pay some of that back, by sharing that knowledge wherever I can, but it never feels like enough.

I see people on twitter and facebook, in forums and mailing lists, and in RL as well, who have such little knowledge about their diabetes that I find it terrifying.  I don't blame them - I was much the same in some ways - but when you find someone who's on a pump who has never been told about ketones, or someone who has never been told the importance of matching carbs and insulin, or even that you have to worry about more than just how much sugar is in something, it's scary. I worry for them, and I despair at the thought that there are HCPs out there who think that it's perfectly acceptable to let someone go with such a potentially dangerous thing as insulin with no education - or who blame the diabetic for out of range results without helping to understand ways of improving things.  There's no excuse for that in my book, and it's one of the reasons that I think the DOC is so fantastic - because it helps to provide that education, even when the professionals who should be doing it are failing so miserably.

Diabetes Blog Week Day 7: Spread the Love

As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. (Thanks to Pearlsa of A Girl's Reflections for inspiring this topic.)


You know, this plan I had to read all the Blog Week posts in time to do this topic would work so much better if I didn't have to do this pesky job thing. Or end up with the lurgee mid way through the week.  However, both of those things have conspired against me, so I'm going to pick three posts I enjoyed reading this week, but there are so many more I haven't had time to read yet that I feel I'm missing a lot of excellent blogs out.

That being said, of the ones I've read so far the following three  (and so hard to narrow it down to three!) are all bloggers new to me and have been my favourites:

I love reading about people who have great doctors, and I really love the description of how trying to balance life and diabetes doesn't always fall in favour of diabetes, and that her consultant understands that. :)


Targoglycemia by Ninjabetic   

I loved this, it really made me smile,  Swap Target for "major supermarket chain of your choice" and this is me!  I've had some of my worst hypos in supermarkets - there must be something going on!

Share and Don't Share by 1type1

I love reading about people who have great doctors, and I really love the description of how trying to balance life and diabetes doesn't always fall in favour of diabetes, and that her consultant understands that. :) 

 The Next Day by diaturgy

I found this post fascinating, because it both stuck a chord with me, and didn't.  I've grown up with diabetes, and it's always been part of who I am and I'm fine with that.  I find it really interesting to read about people who feel differently, to understand their point of view.  I also loved the emphasis on non-physical achievements, ones that just get a little bit better every day without a defined end point. :)

I'd also like to thank Karen over at bittersweetdiabetes, for continuing to organise this week, coming up with some amazing and thought-provoking topics, and bring the DOC closer together.  If you have time, go take a look at some of the awesome posts from this week (a link to the topics and post lists is here)

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 5: Freaky Friday

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)


This is actually a blog post I've been meaning to write for a while. I live with two chronic diseases already - type 1 diabetes and autoimmune hepatitis (AIH) - and I've said for a while that if I was given the opportunity to get rid of one (and only one) of them, I'd get rid of the AIH.  This topic gives me a chance to explain why.

For those of you unfamiliar with AIH there is a fairly good explanation on wikipedia here, but basically my immune system has declared war on my liver (see, it's that bloody immune system again), and is trying to destroy it. It's quite rare, and I have type 2, which is supposed to be even rarer. Diagnosis is through a variety of blood tests (to rule out other as much as anything else) and a liver biopsy (and oh, what fun that is).  There can be many symptoms, but when I was waiting to be diagnosed I mainly had nausea, fatigue and jaundice.  It's hard to explain to people how ill you are when those are the symptoms, because it just sounds like you're a bit sick and tired, but it was pretty damn horrendous.  I had no energy, and I was so tired I would fall asleep watching tv, on the bus, sitting at my desk at work.  Just getting up in the morning was an effort, and the nausea was constant, which made it difficult to eat normally.

It also messed with my blood sugars big time (it was actually first picked up after I had a seizure caused by low blood sugar) and my endo basically explained that my liver was having issues with pumping out it's normal levels of glucose - sometimes it would shove out more, other times it wouldn't be able to do that and the levels would drop.  On top of that, the inflammation and stress on my body would be combining to push my levels up.  It was a bit of a nightmare.

The treatment for AIH is steroids and immune suppression. For those of you who've ever had to deal with steroids and diabetes, I'm sure you can see the problem... I was lucky in that my hepatologist started me off on a dose that was a bit lower than they normally would, and I responded really well to that.  My hep has been fantastic in trying to balance the AIH and diabetes, which has been incredibly helpful. 

So, now my liver numbers have been in the normal range for about two years now, and a second biopsy I had a year ago showed that a the level of damage is considerably less than it was.  I take a bunch of tablets every morning, and had regular blood tests to keep an eye on my liver function and my white blood cell count (something they have to do when you're on immune suppressants).  IT doesn't sound too bad, right? So why would I get rid of it instead of diabetes?

Because I have no control over it.

Diabetes is a pain in the ass - I don't think anyone would dispute that .  However, with diabetes I have a certain level of control. I can monitor my own blood glucose levels.  I can take action if they are out of range.  I can make changes to my treatment on my own, and I can monitor the effects of things like different types of food or exercise, and I can respond to those and then see the results.  I have longer term monitoring at the clinic, but I'm in charge of the day to day stuff, and even when it's not behaving, there are generally things I can do.  I don't feel helpless.

With the AIH, it's the complete opposite.  I rely on blood tests and clinic visits to tell me how I'm doing.  I have no idea what's going on with my numbers, so I can't respond to changes in them.  Flare ups (where the immune system has another go, and your liver numbers rise again) aren't uncommon, and I can't head them off at the pass - basically I'll most likely end up with some of the same symptoms as before, and then have to wait to see my hep before I can change my medication to deal with it.  AIH kills people if it's untreated, and I know of people who have had to have liver transplants because of it.  Diabetes doesn't scare me the way that AIH does. I hate the feeling of being so helpless and basically at the whims of my immune system.  I'd get rid of it in a heartbeat if I could.

In terms of how I treat people with other medical conditions, I think participation in the DOC has kind of changed that, but in a way I hadn't considered until I thought about it.  In the DOC, we've all had those stupid questions from people who have no idea about diabetes.  Thinking about other chronic conditions, I realise that I don't often know much about them.  Being part of the DOC makes me stop and think before I ask questions or assume things, but this has also made me realise that, if I wasn't diabetic, I probably wouldn't know much about diabetes myself, which gives me a little bit more patience with those stupid questions. :)

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 Day 3: Memories

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

This was actually a far harder post than I thought it would be to write. When I first started to think about writing this post, all the memories that immediately sprang to mind were all negative.   The strongest memories I have related to diabetes are things like dreading going to clinic when I was a child, because I always expected to get yelled at.  The times I've passed out and woken up to paramedics. The time I ended up in hospital with DKA because of a GP that didn't know the difference between type 1 and type 2.

But I didn't want to write about any of those things, because living with diabetes is crap enough without constantly having a negative mental association with it. So I had a think, and I've come up with a more positive set of memories I wanted to write about, mainly because for me it represents a huge milestone in my attitude toward my diabetes care. 

When I moved down to Cambridge six and a half years ago, I wasn't in a particular great place in terms of my diabetes. I was on two injections of Mixtard a day, my HbA1c was in double figures, and I was going through a fairly extended burnout. Things changed a little bit when I started attending Addenbrooke's - I was put on MDI and taught the basics of ratios, so I was on a much better regime but I was still very much in burnout.  I had an annual review, where my endo looked at me and "you're smarter than this, you can get better results." It was the first time in about ten years that anyone had said that to me about my diabetes, and actually offered to help me do it.  Things didn't immediately get better, but it planted a seed, and a few weeks later I was floating about on the interwebs (as you do), when I googled something (can't even remember what it was now), and I ended up on the diabetesdaily forum.

It was eye-opening.

Here were a whole bunch of people, all with diabetes, with similar diabetes issues and regimes and thoughts to me, and they were talking about it and discussing ways to help. Up to this point, I knew one other person with diabetes, a fellow type 1 who was also and seemed to get on great with it.  I'd never met anyone - online or off - who seemed to be going through the same issues as I was.  I can't even explain it, it was like someone lit a fire in my brain.  I started reading everything I could, and that whole feeling of belonging, of having finally found people who understood what it was like to live with diabetes, never went away (it never has, even to this day). I introduced myself, I asked for advice, and the support I received was amazing. I started testing again, and instead of getting angry at the high numbers and giving up, I started trying to figure out why I was getting those numbers, and making changes. I picked up some books, I set about educating myself in all the new things about diabetes management that had passed me by. I started seeing changes, and feeling better, and that just motivated me to work harder.

The HbA1c I had at the annual review was 9.4.  Four months later, with the new knowledge and work I'd put in it was 7.5. Six months after that it was 6.9. I've done DAFNE, I'm now on a pump, and my HbA1c has been 7 or less for the past three and a half years, and I'm really proud of that. I never thought that was even possible when I was still in Glasgow.  And it's all because of stumbling onto that site, and finding the DOC.  A very important and positive memory in my diabetes history. :)

Diabtes Blog Week Day 2: In defence of my pancreas

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

Dear immune systems of type 1 diabetics,

We have had enough! For years now we have taken the blame for your failings - no for your wilful destruction - and we will not stand for it any more!

We were just innocently sitting there, quietly minding our own business. Monitoring things, pumping out some insulin, some glucagon, some digestive enzymes while required. Quietly but efficiently maintaining the status quo. We were happy. We did our job well, and while we  may not have received much recognition, we took pride in our results - perfectly maintained blood glucose levels.

And then you came along, with your riotous, rebellious ways and changed all that. What did we ever do to you? There was no reason for you to come into our quite little neighbourhood and wreak havoc. And then to just go own your merry way afterwards, while your owner got sick and we took the blame for your insurrection? Outrageous!

Well, we are sick of it. No more "stupid pancreas". No more "lazy pancreas" We demand that you stand up and take responsibility for your actions! Your cowardly ways have to come to an end, and you should be held accountable for what you have done to us, your poor innocent victims! The fault is yours, accept the liability, and allow us some measure of peace!

Yours,

The pancreases of type 1 diabetics

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