Tuesday, 31 January 2017

Kaleidoscope - what are YOUR priorities?

I've been out of the loop in the last year when it comes to new projects on the diabetes horizon - mainly because there is a socially acceptable level of housework which has to be met in order for your home to be considered habitable; a level which has long been the stuff of legend in our home since the whirlwind arrived.  But last week I had the opportunity to take part in a focus group about a new way or working with Healthcare Professionals (HCPs) when it comes to verbalising what is important to us in managing our diabetes at any given time, whenever we visit the clinic.  That new way of working is called Kaleidoscope.
Kaleidoscope is the brainchild of Chartered Health Psychologist Dr Kath Barnard, who recognises that at any one time there can be a multitude of factors affecting how well we are managing our diabetes on any given day.  Those factors (for example, the level of support we have at home, our access to the appropriate technologies, our knowledge of diabetes, or how burnt our we are), are fluid.  They change constantly and our needs change based on how well each aspect of our lives is working with all the others.  And just like a kaleidoscope, if you stopped your life in the middle of the daily whir, the resulting patterns would look wildly different and complex each andevery time.  But trying to communicate what is most important to us in the 15 minutes we have to meet with our diabetes team can be difficult.  And if, like me, visits sometimes happen when I am in the depths of burnout and barely even registering my diabetes, those clinic visits can sometimes involve a very satisfying - but not overly productive - 15 minute rant about diabetes and the general bastard that it can be.
The idea behind Kaleidoscope is that a short online (mobile friendly) questionnaire (six minutes to complete in my case) can help identify the top 3 priorities for you at that time.  The questions broadly cover a number of key areas such as environmental, physical and psychological factors and how you are feeling about various aspects of your care/management. The end result is your top three priorities listed for your next clinic visit. This gives a voice to those struggling to find their own, or to those who find it difficult to steer a conversation - or even recognise - what is most important to them.
I had the opportunity during the focus group to try the model, and completed it true to what is flipping around my brain about diabetes right now. I imagined that my clinic visit was tomorrow, and that this would be what I aim to cover.
"Great," I thought.  "But I know what my priorities are. I don't think I need to know them before I go in. This is probably more for people who struggle to communicate their own needs.  Mine will obviously all be about burnout."
Oh, the arrogance.
After six short minutes, there they were.  My top three priorities, of which only one related to the psychological aspects of living with diabetes.  It took me a while to work out where the others - knowledge of managing diabetes and another I can't now recall - came into play.  But as I sat and mulled it over, it all made sense.  Since my diagnosis of autoimmune thyroid disease, my feelings towards managing such frustrating conditions have been all over the show.  I have spent hours Googling Graves' Disease, energy levels and diets for thyroid function, feeling helpless, hopeless and hapless at best.  I have tried diets, pills and supplements which have all played a role in changing various aspects of my usual diabetes management - something which played second fiddle to my (stupid) new condition. The ups and downs of trying to solve one problem have left me feeling clueless about the one I thought I had a handle on.
Kaleidoscope helped me unmash the muddled-up soup of thoughts in my head and replace it with three places to start a conversation; one which may help me refocus my thoughts and efforts on the most important thing - my health.
It turns out that even after 30 years, there is still something you can learn.

Saturday, 24 December 2016

Diabetes Soup: Thirty Years at the helm of Type 1

When I first started this blog, almost seven years ago I wrote, "My name is Anna and I am many things. I am a daughter, a sister, a friend, a fiance, a full time worker, a wannabe surfer, an animal lover and a girl. I am also a Type 1 diabetic (insulin dependant, juvenile onset, the beast has many names)... I have been through every stage of adjustment with the condition. I was the child who didn't quite understand it, the teenager who resented and fought it, the adult who started taking it seriously and now I am the girl determined to make it my own."

Thirty years ago on Christmas Eve, my parents brought me home from the hospital in Germany, newly diagnosed and with a challenge beyond anything they could imagine.  The magnitude of their challenge could not yet have been known to them, because only those who have lived through a chronic condition like diabetes could know how every aspect of life could be turned upside down by something as innocuous and seemingly toothless as a pancreas with no ambition.

Thirty years on, with almost a quarter of that time spent writing a blog and regularly exploring the sometimes inexplicable world of my own thoughts, I now know that I was na├»ve to think I was only one thing at a time. My ongoing states of diabetes  - the child who doesn't understand it, the teenager who fights against it, and the adult who has come to accept it - aren't mutually exclusive.  Sometimes I am a big bowl of diabetes soup (35g carbs, pre-bloused).

This year was the hardest of my thirty years.  With a child of my own now just three years younger than I was when I was diagnosed, I have had little time to focus on myself, but in the most wonderful of ways.  It is hard to care about the highs and lows, the carbs and counts or routines and basal reductions when my daughter's needs seem more urgent and important than my own.  For much of this year I was the mother who ignored it, because my girl was always one notch higher on the to-do list.

As my thyroid packed up shop and the sensor got lost en route to the outside of my leg, I was the adult who resented and once again didn't understand it.  I had a whole new language to learn about thyroid, iodine, overactivity and antibodies, and all those years of acceptance and embrace melted away in the face of the seemingly unmanageable tasks. Every day I worried about the what ifs and could-it-bes of my daughter also being diagnosed one day.  I can't think about that for too long, I have to let those thoughts drift away before the imagining the worst becomes my obsession that day. I found the DOC an overwhelming place to be and carried out a mass exodus of almost all of the diabetes groups I belonged to, sneaking out in the night like a shamed fraudster.  I didn't want to be in the DOC I once loved so much.  I was tired.  I still am tired.
But, as the tasks of motherhood became easier to manage and somehow my HbA1c kept steady at 7% (somethingorother in 'new money' mmol), I began to remember what I so loved about blogging. And as I was voted a respectable 62 on the Feedspot Top 100 diabetes blogs worldwide, the recognition flooded back that this is my safe place to say all the garbled junk I have to say, and that being a big bowl of diabetes soup with a million emotions spilling out of me - sometimes all at once - is OK. It's OK to be a diabetes soup sometimes.

I hope that in another 30 years I will be here still, living the life I have been blessed to live, and that diabetes will be a thing of the past.  But if not, I hope I will still have the thoughts to share, the words to write, and the voice to speak about my big old mixed bag of diabetes experience.
Happy diaversary to me, and Merry Christmas to all of you. 

Tuesday, 8 November 2016

ASW2K16 video!

I've posted over and over about the value of knowledge and peer support the Animas Sports Weekend brings and this year was no exception.  As I drove home from the meet in October, the sky blackening as the early autumn nights I so love creeping in, I wondered if the other drivers on the M whateveritwas had enjoyed a weekend as wonderful as mine.
Just take a look for yourselves...
And don't forget to check out what Sir Steven Redgrave shared when I asked him about the value of Dr Ian Gallen's work.

Sunday, 30 October 2016

The Airport Security pat-down/throw-down/interrogation experience

I love to travel.  And although I find aeroplanes claustrophobic on account of my control-freak tendencies and there being 300 people on board, I find air travel exciting, terrifying and amazing in equal measure.  What I find less enjoyable is the veritable lottery of what kind of  frisk, detention, terror-threat suspect, 'experience' I will have at the passenger security check thanks to the diabetes paraphernalia I cart around in hand luggage.  Bizarrely enough when travelling with a pump six years ago, I rarely encountered problems.  I made it to Thailand and back to a friend's wedding on my first ever with-pump journey, without incident.  A usual 'show it, explain it, politely decline to have it x-rayed' mantra was enough to make it on board without an MI5 security team interview.  In recent years however, this has changed.
At Heathrow in July this year, a well-meaning-but-having-none-of-it security guard insisted repeatedly that, "Even pacemakers are fine in the full body scanner".  His persistent claims got louder and louder and more animated until it felt like there were exclamation points at the end of every sentence. It gets hard to be polite when someone wants to disappear with your pump after refusing to accept that it couldn't be scanned.  After losing sight of my pump he returned with it and confirmed, once again, that pacemakers can go through it.  I will of course bear this in mind - if I ever get a pacemaker. 
My journey home from Frankfurt involved three women taking me into a 'detailed check' (kit off, sans dignity) while they appeared confused, befuddled, horrified by my CGM sensor.  This was followed up by someone shouting 'random bag-check' as they carefully selected my bag from the conveyor belt, at 'random'.
The Dubai chapter of the book was inexplicable. Voices were raised, arms were waived and scowls were given.  None of the above perpetrated by myself.
Somehow I made it to America, post 9/11, with 42 hypodermic needles and enough insulin on board to hygienically murder and entire crew while my friend got stopped for a corkscrew, and yet an insulin pump and CGM sensor bemuses most security staff. And I know that one of these days as it is whisked away from my view (against my requests) it will be put through an x-ray machine.
I understand it, of course.  Only 7% of people with T1 diabetes use an insulin pump, and there are currently at least five separate types of pump on the market right now.  There are hundreds of other pieces of diabetes equipment alone and there are God knows how many for every other condition which get seen daily as the thousands of people come and go from the country - millions worldwide.  With terror technology modernising as fast as - if not faster - than medical technology, I can understand why a safety first approach is necessary.  And I'm glad they raise concerns, frankly, because I can feel safe in the knowledge that when someone comes through with a device which on closer inspection is suspicious, I know they won't be on my flight. 
But the question has to be asked, if medical technology of any kind does come through airport security on a daily basis, why is there not a single policy which is part of regular, standardised training?  And why is it not worldwide, in the same way that airport security is standardised worldwide? Yes, there are hundreds of medical devices out there, but when pump companies and hospitals produce letters about the handling of these items, why are their hosts under fire of multiple questions, in different ways, dependent on the day of the week it is, and who is on shift that day?
The issues are that the damage - or possible damage - done by the full body scanners to an insulin pump - which is effectively a small computer - is largely unknown.  I have watched a fellow blogger go into one wearing their pump without incident.  But the warnings are clear, and are agreed upon by all the major insulin pump companies (Omnipod is not affected).  Going through any surveillance procedure which uses this technology with a pump carries a risk.  But as it becomes more commonplace to use full body scanners as the go-to security measure in airports, this places people with diabetes using technologies which are growing in popularity in a difficult position: refuse and raise questions of your suitability to travel, or go through and risk your pump being exposed to potentially damaging x-rays. Just how global can your pump company deliver a replacement pump?
The good news is that change is afoot, with your help.  This topic was recently raised at the Animas Hero meeting a group I have the honour of being part of, as a number of people raised concerns over the mandatory introduction of full-body scanners at UK airports from December 2016.  The following conversations uncovered that Rachel Humphrey at the Universal Freight Organisation was working to raise the profile of this issue at an international level.  Rachel is in contact with the Head of Training at Airports Council International (ACI), who are in turn going to raise this issue in May 2017 at the ICAO (The UN agency for Aviation).  ACI have said:
“The information has been forwarded to ICAO (The UN Agency for Aviation) for their consideration and advice on the best way to raise the issue globally to screening authorities."
ACI will present the issue to the ICAO Aviation Security Panel in May, requesting that it is included in global guidance material. Additionally, ACI will continue to raise awareness with its members through its committees and circulars to airports."
Although many people travel daily without incident, many are also subjected to arguments, questioning and the process of having pumps removed and taken out of sight, due to the varying degrees of training as to how to approach the issue of unfamiliar (should be familiar) medical technology encountered at airports.  I have a 100% record for botched security procedures inn 2016, and as someone who can hold my own but gets deep uncomfortable at the through of being one of 'those' passengers, it's clear this isn't just a one-off situation. And for those using technology which is becoming more common place year-on-year, this has to change. 
If this issue is important to you or someone you love or care for, please visit the links below and look in particular at the petition linked in. And if in doubt, contact your pump/CGM maker for a copy of their letter explaining how their device should be handled.
The official position of Diabetes UK on airport travel with diabetes can be found here.
The petition for a standardised approach can be found here.
The current protocol for security when travelling from the UK can be found here.

Friday, 14 October 2016

Freestyle Libre CASE Giveaway! (UK Only)

Recently the lovely folk at Cara Collection contacted me with the offer of three beautiful cases for a Freestyle Libre Case Giveaway (UK only)!

Cara Collection make absolutely beautiful bracelets and accessories, but better still they come from a place of knowing about type 1 and wanting to make a difference using their skills and reach.  

I have THREE of their beautiful cases for a flash (geddit) giveaway on your favourite all-things-diabetes blog! 

Check out the full video for details, but if you want to get your hands on one of these gorgeous cases ABSOLUTELY FREE, all you need to do is:

1.  Enter why you just LOVE your Libre in the comments and leave a clue as to who you are (no personal details please, there are weirdos out there!)

2.  Send me an email at anna@insulinindependent.com so I can link up your  comment with who you are in case you are a winner

3.  If you are one of three lucky winners  - go ahead and enjoy your Libre in style!

Competition closes 16th October, 2016 at 6pm!

And don't forget to check out Cara's gorgeous webshop for stylish and gorgeous things you will love! They post to the UK and deliveries take just 5 days so enjoy the things you buy even quicker xxx

Tuesday, 20 September 2016

Off-label Dexcom use: Diabetes Gore and A cautionary tale (of a lump named Trump)

It was just like any other sensor removal - something which had become second nature over my 3-year Dexcom use.  Frustratingly on only day 6 of wear, the edges of the sensor tape had lifted off so much that when I rolled the dog-eared tape edges back and peered underneath, I could see the puncture site where the sensor pierced my skin.  Time to take it off.
I was a little annoyed because I hate removing a functioning sensor early, but since my daughter arrived I haven't had the time to continuously check that my CGM tape is still taught on the skin, and quite often I now lose sensors before they expire naturally anyway.  I have to pick my diabetes battles now that I am juggling a whole other life - one which has yet to learn about CGM sensors and why mummy needs to take five minutes to fiddle with Rock-tape and Skin Tac rather than read about gluttonous caterpillars and prowling lions.
As I pulled away the sensor pad and transmitter from my skin, the small puncture wound seemed nothing out of the ordinary: visible, but tiny.  I wiped the skin with a sterile wipe and carried on my day expecting the usual 24-48 hour heal-up time for the puncture wound to disappear.  But 48 hours later the small puncture wound was now a lump.  Barely possible to detect and seemingly innocuous, but somehow foreign feeling on my ordinarily flat outer thigh.
'What do you think?', I asked the GP on my first visit, because I had been warned that the thyroid medication I am on can react badly to an infection so I always needed to check anything suspicious.  "Let's wait and see, but I don't think it's infected." he purported. 
So I waited.
By the third visit. with my skin colour changing and my experience of the lump - now growing in size and thickening in texture - was starting to sour.  The experiment in waiting was now an hourly pre-occupation on my mind.  I was sporting what I was convinced was an example of part of a sensor being stuck in my leg. But my claims fell on deaf ears.
Trump - an unsightly,
strangely-coloured object with strange
ideas of world domination
"I'm sure it's nothing.  If there was something in there it would be hard or would work its way out." I heard, over and over.

I was told everything from "It's a bruise!" to "It looks like an abscess!", but no-one believed there could be anything left inside my leg, despite my protestations about just how tiny the foil-like sensors are. The thing made my leg look like the elephant man, but there was nothing inside, or so they told me.

By my fourth, fifth or sixth visit (I'd lost count by then) my leg, sporting a lump named Trump (big, ugly, discoloured beast unwelcome in its own land) was the stuff of my (actual) nightmares.  I would dream of legs being amputated or infections so bad I could no longer control them. My mood was already low and Trump was making life a darn-sight worse.
By the time I noticed something protruding from my leg, which when pulled at released a whole bunch of disgusting, and two small shards of what appeared to be foil-like sensor, I had seen two GPs over five visits, one diabetes consultant, the A&E department at QA Hospital and a walk-in clinic. I had been placed on antibiotics by the A&E department and was feeling like my leg would explode.

The GP finally got interested around the time that the wound opened, and has since then seen me every two weeks.  But this happened in May.  It is now September.  That's four months of my life spent worrying about how much worse this leg could get.  Four months of my life barely using Dexcom because I was still dealing with the damage of Trump the Rogue.  By the time it broke, and the antibiotics were flowing, my leg looked and felt like something from a diabetes Public Heath Announcement, and I felt just a little broken. 

Diabetes, don't do it kids...
It's been four months and the Trumpy Lump, complete with colouring of yuk and texture of gross, is yet to go.  I'm not sure if it ever will.  The whole experience has been less than enjoyable.
But here's the thing, I still love my Dex.  Even now, with the lasting effects of one gone bad, I love it.  Granted, I enjoy my Dex-free times now, but with a holiday just a few days away my thoughts are already on how many I'll need and how useful it is to have.  And how I miss it, when I have some paraphernalia free days.  Dexcom is an amazing tool, but its not infallible.  It can go wrong.
I emailed some of the pictures through to Dexcom because I decided they should see, and hear about, what I would be posting.  They replied and after a lengthy conversation with Dr Vitaliy Gisin, who called immediately on receiving my email, I got given this advice:
Dexcom advice
Firstly - if you think there is anything lodged under your skin, insist upon an X-ray.  Because of the angle that the sensor goes in, when some gets stuck in your leg, it has trouble working its way out.  In many people the body can just deal with or expel the foreign body, but as I have proven with my slightly broken, semi-functioning body (my words, not Dexcom's!) sometimes this can prove hard.  But an X-Ray would have shown the metal up bright enough to be sure, and could have been done some months ago.
Secondly - off-label is not OK.  Although I make no bones about my use of sensors for far longer than the 7-day label use, this has always been my choice, and I wouldn't advocate anyone else do it.  And although this sensor was on day 6, I used the outter part of my thigh.  This, Dr Gisin confirmed, is also off-label, and he recommended I return to using my abdomen.  My problem with this is that cannulas are painful to use in other areas and thanks to pregnancy, what little usable skin I have left is reserved for my cannulas.  This makes sensor placement tricky. But rules are rules.
Thirdly - and lastly, if any part of a sensor snaps off in or out of your body when removing - keep that sucker in a piece of tissue and send it back to Dexcom.  Dr Gisin was rather disappointed to have discovered I didn't keep the minute shards of sensor I pulled from my leg, as we will never know how or why they failed so badly on day 6 of wear.
So there you have it, my slightly-disgusting and depressing reason for posting pictures which shatter your image of my gorgeous pins (chortle).
Keep Dex-ing people, but do it carefully.

Sunday, 31 July 2016

Depression, Complications and Diabetes: Seeing the signs

It's hard to pinpoint when or where it began but it's been creeping in for some time, and the feeling is all too familiar.  There is so much in my life to be grateful for; a wonderful family, a beautiful, healthy daughter, a good job and cosy home. I go on holidays and have had a rare, precious opportunity to spend more than a year at home with my kiddo before returning to work, something people all over the world would give their left arm for.   But when the early days of depression begin, it is rarely because of dwelling on what you lack. It is a complicated issue made murkier by the swings and roundabouts of blood sugars and diabetes complications.

I spent days Googling 'Post Natal Depression', confused that I felt none of the typical symptoms, but well aware that something wasn't right.  I felt deeply connected with my child, and although I relished  (good God, did I RELISH) the moments I had away from her for a break, I couldn't wait to hold her again and make absurdly disgusting fart noises just to see her smile. I was also in the 'easiest' phase of parenting so far, when she sleeps through the night and is predictable in routine in the day.  I was finally drinking hot coffee again, the house was tidy and I could indulge in whatever evening TV I wanted, with little chance of interruption.  But despite being unable to connect my feelings with being a few months postpartum, my mood was low: correction, is low.

To the outside world I still smiled and joked.  I gushed about maternity leave and posted happy pictures on Facebook, but inside my head was whirring full of emotions fuelled by blood sugar mayhem and fears about the future.

The earliest place I could pinpoint as the beginning was visiting the Opthamologist's office, being told that they believed my Maculopathy may be developing, and further tests were needed.  I guess they have told people this a thousand times, but for me it was a first.  Casually talking about my sight like it was a sandwich I might miss out on eating, we discussed treatment and risks like they were no big deal.  Blindness and amputation have always been my greatest diabetes fears, and hearing the words out loud, looking over to my daughter sleeping peacefully in her pushchair, my mind was spinning thinking how much I would stand to miss out on; how much I wouldn't see.

Each morning I wake with a jump as the two - now three - trigger fingers jammed shut on hand, horribly shocking and a painful way to start the day.  The only relief being an operation.  That to follow the two carpal tunnel operations I have already had and the double tendinitis which needed shots and still remains in one hand.  Pain is a powerful beast.

Add to that infected Dexcom site which may, or may not, still have a piece of sensor stuck inside  my leg since May which was viewed by five different medical professionals over five separate visits, before someone had to take my hand and tell me it would be OK, as my eyes filled with tears of terror and defeat.  Eventually someone prescribed me antibiotics. It took a visit to the ER and a million tearful 'thank yous', before someone took my hand.

The pain in my left foot, like walking on a stone, may or may not be a diabetes nerve complication.  It's hard to tell given that nerve endings are tricky things to look at.  But it makes even the most wonderful walk a painful affair.  Pain is a powerful beast.

In recent months I have had so much to feel joyful for, but even the most joyful moments have been dulled by the constant aches and pains of the complications which everyone tells me are 'just a part of diabetes'.  The drip-drip-drip of complications, pain and medical mysteries has left me feeling just a little broken, at a time in my life when most women talk about how pregnancy and labour made them 'think they can do anything', I feel nothing but all the things I can't do.   

"There is always someone worse off than you," Is a mantra I've tried to tell myself, but in the moments I spend trying to get out of bed without bending my fingers because they will snap shut with excruciating pain, or the moments where the GP sends me on my way telling me to lose weight, without investigating any of the issues further, I find it hard to take a whole breath.

I don't know if I am depressed.  But I do know that I am a person with diabetes coming to terms with the possibility of permanent chronic pain from repeated inflammation issues. I am the mother of a baby trying to get my head around the fact that my eyes might not keep going forever.  I am the 33 year-old who has to take each step down the stairs one at a time in the morning because her foot, and swollen joints feel particularly painful today. I am 'the diabetic' gasping of thirst because her postpartum tiredness meant she slept through the 'HIGH' alarm on her Dexcom, the Dexcom she currently resents because of the sensor-might-not-be-sensor still stuck in her leg.

I am human.  And part of being human is that I am feeling ever so completely 'diabetic', right now.  As though that is the biggest part of me. Maybe the only part - the rest having been chipped away by a disease I can't escape. I am afraid.  And that's OK to say.

I don't know what the future will hold, but I know that endorphins and 'saying it out loud' can only serve to help.  Small goals at the gym, spending time outside and perhaps re-immersing myself in the community I have turned away from will help.  

For now, it's just one day at a time.