Thursday, 23 May 2013

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)

Sunday, 19 May 2013

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="">

Friday, 17 May 2013

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. :)

Thursday, 16 May 2013

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.

Wednesday, 15 May 2013

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. :)

Tuesday, 14 May 2013

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!


The pancreases of type 1 diabetics

Monday, 13 May 2013

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.