Embracing the email

For some time now I have been thinking of a way to be able to connect with anyone who reads this blog and wants to talk about anything int it.  Or heck, anyone wants to talk about anything D-wise! 

So, having gone all 2013 on my own life I have embraced an email all for the good of the bloggy, blog blog.

If anything in my ramblings strikes a chord and you want to talk/rant/argue/share/cry/chat, then you can reach me on my big girl grown up email at:

insulin.independent@gmail.com

Costly business

Paying for your health care, be that in the form of medical insurance or prescriptions, right the way up to paying for every single hypodermic needle, and whether that's 'right' or 'wrong' is of a matter of personal opinion and can start many a heated debate - particularly in a culture where most of our care comes free.  

We hear horror stories all too often about our friends in the US left lying on hospital gurney's while their families scrabble around for money for care, or children in India who in 2013 continue to die because they cannot afford insulin.  So how do I feel about paying for my own care?  Well, as someone who is fully funded for everything else that I need, other than Continuous Glucose Monitoring (CGM), I can live with paying for something here and there.  My view is that if I value my CGM enough, I will pay.  But CGM is an expensive business; disgustingly expensive, in fact.  

Priced at £62.50 per sensor (plus p&p) and with each sensor lasting only 7 days (how long it has CE mark approval for) to use it continuously would cost  - and I suggest you sit down for this - £3250 per year to fund (not including the initial outlay of £975 for the stand alone unit).  You still there?  Not fainted yet? 

Seeing as I don't spin gold or sweat pound coins, I simply can't afford that kind of money.  Show me many who could.

As a result I have had to find ways to make my sensors, or my money, last a little longer.  Over the last few months I have discovered little ways to make the cost a little more affordable for me.  So here are my Top 5 experiences of getting a little more out of the system.  

Please remember that I am NOT a diabetes professional, medical or otherwise, I DO NOT speak for Dexcom, Animas or Advanced Therapeutics and I am NOT suggesting anyone do as I do.  Now that the legal bit is done and no-one can sue my rear end, here is how I do it:

1) Consider sensor sourcing.  Until recently I purchased my sensors from a fantastic company called Advanced Therapeutics.  Fast, friendly and professional, they offer a great service.  But they aren't the only provider of G4 sensors in the UK.  Animas, with the introduction of the Vibe insulin pump, also sell the sensors.  I had believed that to buy from them I would need to be on a Vibe pump (which I'm not).  But after a recent conversation with them I discovered you can register as a private customer and buy sensors from them.  Cheaper.  My previous costs were approximately £135 for 2 sensors plus postage and packing at £7.50 per delivery.  Not only do Animas only charge £100 for 2 sensors, there is no p&p.  SOLD.  To register with them, you need a letter from your team to state that your data is reviewed in clinic and to complete their VAT exemption for.  Contact animasUK@its.jnj.com for more info.

(**** IMPORTANT UPDATE: PLEASE NOTE THAT SINCE 2014 (ACTUAL DATE UNKNOWN) ANIMAS NO LONGER SELL DEXCOM SENSORS TO PEOPLE WHO ARE NOT VIBE CUSTOMERS****)

2) I wear my sensors for longer than I should.  I do NOT recommend anyone do this as it is against the guidance from the company, but if you do then hey, that's your choice.  I wear my sensors for as long as they will go for or if they feel uncomfortable at all (not happened yet), which has so far varied between 8 and 36 days. When it comes to the system warning me that the sensor is expiring I simply restart, telling the system I have inserted a new sensor, when in fact it is the same one.  Boom.  Money saved. Mwahahahaha !

3)  Wearing my sensor on my arm.  It is fast becoming the industry's worst-kept secret that wearing the sensor on the arm seems to make it last longer.  I don't know if this is because the arm is less jiggly (I got a lotta jiggle) or some other mystical force but for me, arm sensors go significantly longer than others.  The one I removed this morning was 36 days making the cost go from almost £9 per day, to £1.70 (or £1.40 on the Animas sensors).  Granted it is a reasonably rare occasion to get this long, but my last 4 sensors have all done between 22 and 36 days.  So they are consistently in the 3 week onwards time length.

4) Give it a rub.  Oo er.  This one comes from everyone's favourite German blog's Ilka, who told me that when she gets the ??? symbol, she massages the site for a minute or so, making it last longer.  I wasn't convinced, but gave it a try and every single time my struggling sensor has fired itself up again.  Give it a try, does it work for you?

5) Get a Vibe insulin pump.  In the UK you apply for a new funded pump every 4  years - as the warranty runs out.  The Vibe insulin pump has integrated Dexcom CGM, meaning you don't need the standalone unit (£975 of your best pounds). That starter kit includes the unit and the software etc, but no sensors (seriously, a starter kit with no sensors?) so to get started you need £975 plus £250 for 4 sensors and £7.50 p%p.  That's £1232, if you were wondering.  However, If you order the starter kit that integrates into the Vibe pump, rather than the stand alone unit, it costs £450 from Animas, including 4  sensors.  That's right, 1/3 of the cost over the standalone unit and you can get started straight away, saving the cost of 16 sensors while you are at it. Maybe when you are due to review, this pump would be worth a look.

So there you have it.  No, I haven't figured out how to make this cheap.  Yes, it continues to be a shockingly expensive tool, but that doesn't mean it isn't worth it; it is worth it.  And hopefully this post has given you something to think about if you are considering CGM sometime in the future or are using it and looking for ways to cut the costs a little.

Big love, as always.

The mystery of the tingling

"I've got a headache".  That'll be the betes.

"I'm having trouble losing weight".  That'll be the betes.

"I walked into a table because I was drunk".  That'll be the betes.

In fact, most of the above are down to the big 'ol glass of red I enjoy on occasion.  But as people with type 1 diabetes are often all too aware it can be an easy condition to blame every little bump, scrape, scratch and ache on, because the complex network or nerves in the body are all at the mercy of the damage from high blood sugars.  

But even so, if I go to the doctor and they begin to suggest that any illness I might be presenting them with is connected to my diabetes, I make sure I give them a damn good grilling about the hows, whens and whys faster than they can boot me butt first out of their office. 

Two years ago, when I started to experience pain and numbness in my hands overnight and was advised by several friends in the diabetes online community (DOC) that "it was probably a touch of neuropathy", for some reason it never dawned on me to question it.  I value the thoughts and views of the DOC so much that it seemed to make sense.  The sporadic arrival and dispersal of symptoms, teamed with the occasional spookily timed 3am hypos, meant that I accepted my fate and carried on my slightly less merry way.

Despite having negotiated this condition with reasonable successful for 26 years, having kept all complications at bay through a mix of hard work and sheer luck, I seemed unusually content to be diagnosed through some very unorthadox methods (Facebook chat, of all things) and without a second opinion or someone even having laid hands on the medical mystery I was presenting. It wasn't until a friend suggested it could be Carpal Tunnel that I started to wonder if they were on to something.

Three months later and after a series of pokes, prods and electric shocks, I finally have the answer to the mystery pains and it is indeed Carpal Tunnel.  And while there is a connection between Carpal Tunnel (inflammation of the median nerve in the wrist), the reason I donned a big, bright smile when the doc gave me the news was because it means I am still smashing this diabetes sh** out of the park and keeping complications firmly in the box.  It means the choice to wear a pump, to pay for continuous glucose monitoring and to eat low carb so that my HbA1c stays in the 'yippee' range, is paying off.

Anna 1 - Diabetes 0.

 

Roddy Riddle: A name you may want to note down...

If you haven't heard of Roddy Riddle and his amazing achievement yet, you soon will. 
 

Last year Roddy decided to prove that diabetes shouldn't stop you doing anything,- by running a marathon.  But not content with running a 'normal' 26.2 mile marathon (literally a walk in the park for our Rodders), he chose the Marahon des Sables (MDS) - no less than 150 miles through the Sahara desert. No mean feat, I think you'll agree.
 

Coming from someone for whom running out of wine is at the top end of the running I can do, I personally find Roddy's journey incredible and even when finished, hard to imagine possible.  

Insulin Independent last caught up with Roddy in the preparation phase of his monster diabetes challenge, when 50 mile runs in icy Scottish conditions were a drop in the ocean for a man who would soon jet off for the sand dunes of the Sahara.

Having now achieved what many could never even imagine, Roddy kindly agreed to pop by Insulin Independent again and share the rest of his inspirational story.  Check it out below.

A: Roddy, first of all congratulations on completing your challenge! Tell us a bit about it? 

R: The Marathon Des Sables (MDS) is classed as the toughest foot race in the World, it is 150 miles over 5/6 days depending on wether you complete the longest 48 mile stage in one day.

A: How did you cope with the temperature difference between Spring-time Scotland and the Sahara?

R: Although running in complete opposite temperatures in Inverness it was still mentally challenging which was something I required during MDS. I was Lucky enough to get access into Edinburgh Napier University's climatic chamber leading up to the start to help me get used to running in the extreme heat and also test out all my kit in heat.

A: What effect did that difference have on your diabetes and how did you manage that?

R: To be honest we didn't know what was going to happen when I went to the Sahara, Animas who make my insulin pump didn't know how pump would cope with the extreme harsh conditions.

A: How well did your training set you up for the real thing?  

R: My preparation was perfect, I was doing between 50-100 miles with a complete mix of terrain, some runs with full backpack to get used to carrying 10kg. The only thing I would do differently is I would train in a disused quarry to get used to running on sharp rock.

A: Any surprises when you got out there?  

R: The day before the race started we had to hand over our ECG and medical which my one had type 1 diabetic, this caused a great deal of concern to the doctors.  It took a fair bit of convincing from me that I wouldn't cause any problems to medical staff before they signed me off to receive my race number and timing chip.  Also the amount of sharp rock underfoot and the lack of wildlife, nothing there and I can understand why.

A: Tell us about the different stages? 

R: Stages varied in distance, stage 1 was 23 miles, stage 2 was 19 miles, stage 3 was 23 miles, stage 5 was 48 miles and the final stage was a traditional marathon distance of 26.2 miles. The toughest for me was the shortest, I had a touch of vertigo before going to MDS, this stage knocked that into touch, it had 3 mountains with ridiculous drop offs and the final climb had gradients of 50%, as it turns out it was the toughest stage in the history of the event. Some cracking views during this stage. My blood glucose levels were between 3.7 mmol/L-6.3 mmol/L during the toughest stage which was reassuring.
Favourite stage was the longest as I ran it with Andy and Steve who were in the same bivouac as me. For 3 hours that day it wad 52 degrees and during that period a 10km section of savage sand dunes took us 2 hours.

A: You used an Animas Vibe insulin pump with integrated Dexcom Continuous Glucose Monitoring (CGM) during the challenge,  how much did that benefit/help towards completing the challenge?

R: It was a major help even with the 15 minute time lag, the trend arrows helped me control what carbohydrates I needed to take on board and also change my basal insulin requirements on the move.

A: How long had you been using them when you started the challenge?

R: I went on my insulin pump in October 2012 and trained a small amount with the CGM sensors due to the cost of them I don't use them all the time. I thought it was really important to have the CGM readings from the challenge to hopefully help diabetic specialists learn from my experience.

A: Were there any moments when you struggled to maintain focus?  

R: None at all, I was allocated sending one email each day but could receive unlimited emails.  The daily emails I received gave me so much strength knowing what I was doing was changing people's outlook on what can be achieved whilst having diabetes.  Knowing I was making a difference kept me going.  I even got an email saying what I was doing gave the parents of a 13 year old type 1 the confidence to allow their daughter to have a sleep over.

A: What supplies did you take with you to manage any hypos/hypers?

R: With being self sufficient during event weight posing an issue, the Glucagen hypokit stayed at home along with my ketone monitor. I carried my insulin pens in a Frio bag along with back up insulin and had a few spare cannulas, alcohol wipes and spare CGM sensor. I also had my OneTouch Verio IQ to do blood glucose tests and calibrate my Vibe CGM.

A: What food were you eating when you were out there?

R: I spent a lot of time and preparation on my food. Each competitor had to carry a minimum of 2000 calories a day I decided to carry 3055 calories per day, I had 3 x Wheetabix with 15g raisins, 25g macadamia nuts and 25g dried milk for breakfast.  Evening meal was Morrison's Utterly Nutty muesli with 25g macadamia nuts and 25g dried milk. I also had 2xPeperami and 3xsports protein bars.
During each stage my 1st drink was High5 extreme which had 47g Carbs and 150mg caffeine, my next 3 drinks were High5 energy+ with 47g Carbs and 30mg caffeine and my last drink was High5 4-1 which has some protein to help start the recovery process for the next days stage. Taking the extreme is the equivalent to taking 3 Proplus caffeine tablets - being type 1 this helps extent my carbohydrate stores for longer.

A: What would you say to someone who has heard your story, also decided that D shouldn't stop you doing anything and now wants a challenge of their own?

R: Basically having diabetes shouldn't stop you from fulfilling your dreams and to rule diabetes, don't let it rule you. Start by going to a gym.  This will allow you to gain confidence and learn what exercise does to blood glucose levels and if you do have a dip you're not halfway up a mountain and can go to kit bag to get some glucose drink/tablets.

A: What are your recommendations for anyone wanting to start their own sporting challenge?

R: Have goalposts that are achievable for each individual is completely different.

A: Other than crossing that finish line, what was your best moment out there?

R: Receiving the emails and they made me proud that what I was doing was making a difference like giving families with members who have type1 diabetes the to do exercise or have a sleep over at a friends house.

A: Finally, you kinda took on 'the big one' but are there any future challenges on the horizon for Rodders??

R: Can't say yet, but watch this space for more....

 And to see some of the highlights from Roddy's journey, check out his video: