Saturday 25 January 2014

Complacency: winging the cannula change.

Dexcom site change day.  
Prescription order day. 
Prescription collection day. 
Sensor order day.  
Pump supplies order day.
Insulin reservoir refill day.
Cannula change day.

Keeping on top of diabetes self-care must-dos can be a challenge. None of the jobs above ever seem to fall on the same day, for me, anyway.  Sometimes they are days apart; sometimes they take a few days to organise; sometimes they fall on the same day.  On more than a few occasions I've put in a (way too) late Friday night order at 4:59pm to my diabetes team for supplies, knowing that Monday will be a race to the (clinic) finish line, kind of morning.

Over the years I've used a host of methods to try and make sure I don't use cannulas longer than I should. I've used iPhone alarms, always changing on certain days (clearly whomever invented weeks didn't have to change cannulas every three days....) and the old favourite, 'winging it'.  Since switching to steel cannulas (which are two-day wear, rather than the three-day Teflon alternatives) I've been pretty good at remembering to change them.   Of course now and then, I may let things slip.

Since 10am this morning I've felt a little as though I've been fighting to keep the blood sugars in their usual fairly happy morning state.  The temporary basal have had to creep up on an almost hourly basis to blunt the effect of somethingorother affecting them.  My overestimated 2-unit dose for a 1-unit bowl of fruit didn't even blunt the sides.  I may as well not have taken any insulin. And my 13.7 and rising hardly reflected the 20g fish and stir-fried vegetable dinner.

"But I changed it on Wednesday evening!  It's only Fri.... Oh."

By day three my cannula is usually the biggest reminder that I've by-passed change day.  Of course, I shouldn't be waiting until day three, and had I been a little more organised I'd have switched it out last night.  But what do you know, 40 minutes post-change and the 3rd or 4th correction of the day finally budged me back in the direction of the black.

Do you struggle to make your diabetic routine match up?

Friday 24 January 2014

CGM: Clinging on

At £50 a pop (for a week's use sensor) Continuous Glucose Monitoring is an expensive habit.  But being one which improves my control, gives me a Safetynet to tell me when my sugars are dropping, rising or stable, and moreover gives me a sense of empowerment and superwoman-style 'I have the power' confidence, I have deemed it worth it.  

So the last thing you might want to do with a brand new sensor is have a vigorous shower (?) and knock the sensor.  Why might you not want to do this?  Well, my (apparently very) aggressive showering style meant that on day 2 (F*$@!) of my new sensor life, I found myself facing a rather disabled looking sensor.  Hanging by a thread and only still clinging on for dear life by a small section of tape and the sensor itself, the days appeared numbered.

In the hope I might be able to squeeze even one week out of this one, accepting that I might have to deal with my first less-than-seven-day sensor in a year of CGMing, reminding myself of all the 20-something dayers, I slapped on a Kinesiotape in my very best patch-up attempt

But much to my joy and delight, with a further layer of Tegaderm to keep out the damp and add another layer of sticky, this little bad boy has made 9 days and is still going strong!  Dexcom sensors never fail to impress me; with its accuracy; with its bomb-proofness (bom-proofability?!); with its robustness.  And this one has failed me not.

I'm not sure how much longer I will be able to squeeze out of this one but here's hoping!


Tuesday 14 January 2014

Off-label CGM use: words of caution from my consultant

I spent most of today thinking my 24 day-old sensor was 'way off', because the calibrations were rarely within 1 mmol; something I have come to expect from my trusty companion.  When I wasn't scoffing at the result, I was resigning myself to pulling it - something I hate doing when I've managed to get almost a month out of it.  For some reason I become attached to a sensor the longer it lasts and the better it performs.  But I thought that this might be a good opportunity to test out a word of caution my consultant had given me in clinic some months ago.

When my consultant found out that I was using my Dexcom G4 sensors for waaaaaay longer than the 7 days they have CE approval for, he offered me a word of caution.  Two, in fact.  Firstly, doc was worried about the damage I might be causing to my might-be-needed-one-day cannula sites, as I was regularly getting 21-28 days out of sensors - up to four times longer than advised.  The second concern he had was that over time, the peaks and troughs the trace would show me would be less sharp as the sensors response to glucose in the body becomes blunted, meaning you won't get the precision you are looking for and could even miss the highs or lows you bought CGM to catch in the first place

As I downloaded the data I was writing the 'watch out for this, folks' post in my head already. But as I looked at the picture, this is what I found:

The red dots are my blood glucose calibrations today, while the purple trace is the results my sensor was providing.  I felt surprise as I looked at it, having been convinced this was 'the risky bit' my consultant had warned me of.  But even though the calibrations felt 'way off', when you look at it though the objective eyes of hindsight (and some kick-ass software), the valuable trend information (that we have so banged into us is more important that the 'exact number') is still there.  At my highest point the sensor was spot on, and at my lowest it was still reflecting the changes in my glucose trends.  In fact when you really look at it, the CGM still appeared to be picking up a few more peaks and troughs than my BGs did, as it should.

Perhaps it felt that way because this is the kind of data you see would normally see on day 5 of week 1, when the sensor has had a chance to be calibrated numerous times but is still a 'fresh' sensor, in the long run:

This day was generally filed under 'not so great'.  Any BG of 18mmol at 3am is always filed under 'not so great' (unless you are normally 24mmol at that time of night, in which case, go you!), but despite the crazy roller-coaster day, the only two calibrations I did (unusual, for me) were both absolutely spot on.  Perhaps it is because of this kind of precision that I have become so accustomed to that threw me off when the calibrations seemed so 'far off' today. 

But having seen the data from today and realised that the sensor was not as AWOL as I felt it was, I'm going to keep hanging on.  Despite being 24 days in I've yet to see more than one set of ??? marks, meaning communication-wise the sensor is still going strong and speaking to the received without any problems - something that can falter in an older sensor.  And although my calibrations are a little off bulls-eye, the trend data is still more valuable than finger sticks alone, so I will plough on until this one gives up the ghost for good.

Hopefully sometime in 2015.

Monday 13 January 2014

Keeping my eye eyeballs

When my eye care was transferred from the community clinic to the retinopathy specialist in the Summer of 2009, I didn't really understand what that meant.  Rather, I understood it - the fact that something about the condition of my retinas had deteriorated - but I didn't really understand the implications of that referral. I figured that at 23 years of having had T1 diabetes, this was fairly standard procedure and that changes would, perhaps inevitably, always happen. 

I have never resigned myself to any particular 'fate' with my diabetes.  And since becoming an adult and emerging from my teen years (see also: total disengagement from all forms of clinical care), I have strived to take care of myself. But when you have T1 diabetes you have to learn to face up to the fact that complications may happen.  Although good blood sugar control is widely accepted as the most effective way of reducing the risk of complications, it does just that; reduces risk.  It could, and might, still happen.

As part of that referral my appointments were ramped up from every 12 months to every three, and I no longer saw the friendly nurses at the clinic in a matter of 20 minutes as they photographed my eyeballs and sent me on my way.  Instead I moved to two-hour appointments with an hour-long wait with one of the senior Consultants at Queen Alexandra's Opthamology department, a quiet but personable man known to me only as Mr Booth.  

It wasn't until around a year after I first attended, and 6 months after starting my insulin pump journey, that I started to really ask about what 'all this' meant.  Mr Booth explained to me that a number of years of high blood glucose (BG) levels had left damage to my retina.  He told me to imagine that I had been scratching away at the same spot on the back of my hand, and that eventually that scratch would bleed.  He explained that BG levels over recommended levels (as opposed to the 'non-recommended' ones I had been having fun with) left this kind of damage on the retina.  He explained that my non-proliferative retinopathy (small bleeds) were not too great a risk at first, but that they were beginning to change and I was now considered at the transitional stage to proliferative retinopathy. In human terms, this means that in order to cope with the changes in my eyes, my body would start to grow new, smaller, weaker blood vessels, and that when these break from the incessant scratching I so loved they would leak larger, more damaging amounts of blood onto the retina.

Mr Booth gave me some trusted resources to go to to learn more, and always asked me to continue my hard work.  He was always kind and gave me the truth.  Sometimes that was a hard truth.  But I'm not a 'sugar-coat it' kind of girl (mainly because sugar was not about to help this situation.  Pun-tastic, yah?).  I like to hear it as it is.  It makes me take things more seriously.

So why is retinopathy so serious?  Well, this is why. When the capillaries begin to bleed the vision you are left with until blood disperses (which can take weeks) looks something like this:

As I'm sure you can imagine, life through these eyes is a damn-site tougher.  There would be no driving.  Everything from shopping to working, and cinema to time-telling - everything - would be a challenge.  And it wasn't a challenge I was ready for, or ready to accept, anyway.

I knuckled down, exercised, mastered my pump, bought myself CGM and worked really hard at my diet to find more blood-sugar friendly foods. And I secretly prayed to a God I don't believe in that things wouldn't get any worse.
Dilated pupils.  And approximately four-inch-long lower eyelashes?
January 2014 would mark four years since I first asked Mr Booth what was going on.  January 2014 marked the four-year anniversary of pumping.  And January 2014 also marked the time I was able to rejoin those nurses at the community clinic.  Today marked my annual eye-dilation and photo-shoot and the evidence was there; after four years of constant efforts to keep things on a tighter leash, my eyes have finally shown the progress the Opthamologist needed to see in order to sign me off from their intensive service.

My latest set of eyeball photo-shoots evidenced that not only had I been able to stave off the transition into established proliferative retinopathy, but I had also managed to reverse the damage and put myself fully back into non-proliferative retinopathy (also known as background retinopathy).  And the better news still is that background retinopathy can be reversed even further, returning to a normal, healthy eyeball.

This is, of course, my new aim.

Cateract.  Sparkly.
My cateracts are still in full swing (another complication of diabetes: it speeds everything else up), but they are operable and not something I worry myself about at the moment because I still have
what they call 20/20 vision.  

Complications can happen, and I will be ready for them if, or most likely when, they do.  But in the meantime, if you've been diagnosed with retinopathy and think 'well that's it', (because that's what we are often led to believe), that's not it.  There are ways to reduce your complications and give yourself the best chance to stay complication-free as long as you can. 

Wanna get intimate?  Then check out my balls.  

June 2009.  Haemorrhages showing on the left side of the eyeball (red dots)

January 2014.  Haemorrhages vastly reduced and showing signs of reversal.
And a much healthier looking eye all-together.  

Wednesday 8 January 2014

New year. New pump.

An insulin pump becomes a part of you when you wear it every day.  It becomes your friend; your partner in crime; your invisible ally; and even your enemy at times. But it is a part of you, come what may. 

As this blog turns four years old on January the 24th, having been started the day before my pump journey began, the time has come for a new pump to be chosen. Pump warranty lasts for four years. And as this has proved such an effective self-care tool for me (with a million pointers from my long-suffering (but well paid) team, and lesser-paid members of the DOC) I have earned the right to keep this tool, according to UK standards.

The way I see it I have three viable options. 

My Paradigm Veo has been my lifeline for the last four years and I could not rate Medtronic, the company behind it, more highly. Their customer service is second-to-none, their technology superb and their customer engagement on the up all the time. But pumps have what the world likes to call,  'Unique Selling Points'. Much like a car, phone or long-desired gadget you may still be delighting in after Christmas, there will be something about each pump that best suits your life and your needs. 

When I started the Veo I still didn't fully understand the mechanics of Continous Glucose Monitoring (CGM), but I knew that Medtronic were the only company offering this in the UK, which is why I so wanted one; just to have that option. Patient choice.  The pump teamed with CGM has a low glucose suspend feature which, if you suffer from unexpected hypos - particularly overnight - is a godsend. 

But, travel a few years forward and having tried the Enlite CGM and come to learn about the Dexcom system which people seemed to so rave about, I fell in love with the Dexcom way of doing things. And this was the system I ultimately chose. Given that fact, perhaps the USP of the Veo isn't quite so relevant to me anymore? 

My second option was to go tubing free. You know those people who say the tubing is no big deal? Well, I. Am. Not. One. Tubing is the bain of my life and for me, the one part of pumping which pisses me off. Anyone with cats will understand  the kitty playground you become during set changes. Anyone with doorknobs in their houses beware, should even an inch of tubing escape from your waist area, be prepared to learn what 'involuntary tubing-induced reverse' feels like. 

The Omnipod is the only tubing-free patch pump system available in the UK, and since the upgrade to a newer, smaller pod, is freakin' tiny! It's about a third the size of normal pumps and can be place anywhere on the body you can inject, being controlled with a wireless remote-control. Sex. Ee. 

My experience with Omnipod all those years ago when they first landed on our shores was not good. I won't go into it again but they seem to have turned a corner. This time my demo pod arrived only days after my enquiry with a bright, bubbly letter. Their communication has been good and word on the street is their popularity is growing all the time. 

But I keep a close eye on their Facebook group, because I'm a nosey PWD who likes to know what's going on, and the frequent complaints about pod failures, some people claiming up to 10 month (seriously?!) is something I can't overlook. You see, the next pump I wear will, I hope, bring me through at least one safe pregnancy. I have been using steel cannulas for a year now because Teflon ones kink like a bitch, and switching to steel ones means I've removed that risk factor all together.  Omnipod don't have steel cannulas, a USP I have come to rely on. 

Perhaps that's why, despite its attraction and apparent popularity with Omnipod converts, I haven't even taken it out of the box. It still sits neatly in my (rapidly growing) diabetes drawer under the bed, still resting in its case. (By the way, anyone else's bedroom/kitchen/living room drawers being taken over by diabetes paraphernalia?!).

So I have one last option: the Vibe. The Animas Vibe is a tethered (meh) pump, but it has several features which - for me, for now, for my life -  make this one a major contender. Firstly, the Dexcom I so treasure can now be integrated onto the screen of the pump in exactly the same way that the Veo's could all those years ago. Granted, I have a (very expensive) handheld receiver that I prefer to use (easier during exercise/work meetings/dates/driving) but like those steel cannulas, I have come to rely on my Dex so much, and plan to make it a huge part of my diabetes management during pregnancy, that if anything were to happen to my handheld receiver I would be screwed. We can't afford another one, end of story. So as with the Veo all those years ago, if the worst were to happen and it broke/got stolen/ran away to Rio, I would have the back-up option of my pump which can act as a receiver and display the information to me. 

Secondly, my husband Jamie and I hooked up because of a surfing holiday to Cornwall. It was one of the fondest times of my life and for three years we went back every year to the same place, and beach, where we became a couple whose futures were intertwined. Problem was, with an insulin pump that was barely splash-proof, I had to go without insulin for the 4 or 5 hours we would be at the beach, and sure enough each time I would have angry tell-tale high BG readings for hours afterwards, making it an increasingly miserable experience. The Vibe, you see, is waterproof. Problem solved. We could surf again. I could Kayak without trying to squeeze my pump into waterproof cases that barely work and worry the whole time that splashes of water may render my pump useless. The Vibe, solves that problem. 

It also has steel cannulas. And a customizable food database ready for (*squeezes eyes shut and prays to a god she doesn't believe in*) a pregnancy. 

Have you lost count of the USPs yet? Yeah, me too.

The choice was obvious to me, too. 

I've been hooked up to my cutesy, pink, pumpette now for 48 hours. Unlike my initial learning curve of 'ohmhgodIpressedthewrongbuttonamIgoingtobreakit' when I first plugged in the Veo,  I have learned that the way a pump functions is pretty much the same from one pump to another. A bolus is a bolus; a temp basal is a temp basal. There are, I guess, some features that seem awkward to me because the vibe does them differently to the Veo. Mechanics are louder on the vibe but the screen is easier on the eye. Some menus are more complicated, some things are much easier to find. I know that familiarity will come with time. In a matter of weeks, maybe days, I will forget the 'old' pump and simply remember the new. 

So here she is, the still-nameless-but-rather-beautiful, bath-tubbing, Animas Vibe. 

And so the next leg of the journey begins. 

The mandatory Animas water action shot

Wednesday 1 January 2014

2013: Making friends with Sir Steve Redgrave, The World's Smallest Emergency and turning 27

As we say goodbye to the year just passed and welcome in a new year one, I thought I'd run down the fun and frolics I got up to this year as part of my blogging travels.  So here it is, what Insulin Independent published this year:

In January my life was for a very small moment placed in the greatest of danger (see also: not really) when my body went to battle with an evil cannula, taking with it a fair share of my blood supply.  Luckily, I made it.  It was indeed the world's smallest emergency.

By February I'd had enough of the daily grind that diabetes entails and did what any girl in my shoes would have done; I went shopping.  Fortunately my lack of interest in handbags or shoes meant hubs was happy for me to buy myself a Dexcom with our hard-earned wine and beer money.

In March I attempted my first ever VLOG about steel cannulas.  It went well, I think.  See for yourself.

April saw me climb up a Scottish hill and recorded myself trying to master diabetes at the same time. And I rocked some charming head-gear.

May brought with it the delights of the Animas Sports Weekend.  This time I was asked to stand up and tell my story, one of weight-struggles, diabetes and how I used the skills Animas and Dr Gallen, Sir Steven Redgrave's personal physician, brought me to help start shifting my less-than-lovely love-handles.

In June Insulin Independent interviewed the crazy (but lovely) Roddy Riddle, who competed in the world's toughest foot-race with type 1 diabetes.  Although I doubt we'll ever be jogging partners, I'm still in awe of Roddy's inspirational journey.

July saw old faces, ones long moved-on from my diabetes clinic, come back into town.  Faces who reminded me of my years growing up with type 1, and how their support meant I didn't turn into a total basket-case. Not a total one anyway.  Yet.

In August I took on the deeply profound and socially important subject of face-cannulas.  Be prepared. 

By September Sir Steven Redgrave, arguably Britain's greatest Olympian, and Insulin Independent were on first name terms.  Weeeeelll, in fact he kindly took the time to share some thoughts on his journey with diabetes, and share wisdom on what Dr Gallen helped him achieved.  

In October the bright lights of Barcelona beckoned as myself and some of my favourite diabetes bloggers from around the world met as a group to talk about all things diabetes. My highlight of the weekend (other than the many delicious Spanish wines I tried) was talking about what we

hoped to achieve in the next year. 

In November I bared my soul about my issues with food, overeating, and struggling to battle my diabetes demons. The love you showed me in your emails, in person, and in your comments, overwhelmed me.  

And to round the year off on Christmas Eve, I turned 27.  And looked back at the journey.

Thank you for joining me.  Happy New Year and here's to 2014!