Dexcom G4 trial

I'm a glutton for diabetes related gadgets and new bits of kit, but more than that - I am always desperate to seek out new technologies that will help the management of my type 1.

Unfortunately the NHS doesn't share my belief in this, and as such things like CGM systems are very hard to get funding for. I could choose to self fund a CGM system, and it is something I am thinking about (and only something I can think about as my parents have offered to help me out with the costs), but it is really, really expensive.

I have the Animas Vibe pump, which is only avaiable on the European market at the moment. It has Dexcom integrated into in, and uses the latest sensors - G4.

I told my rep a few months ago that I was thinking about self funding, but I wouldn't be willing to pay out for the system before trialling it. So, she agreed that I could borrow a transmitter and have a free sensor for a week.

I went to the hospital on Monday to meet her and my DSN. My rep insisted that we needed to do the insertion in the presence of a health care professional, and I also suspect that it's because my team (who I am new to) haven't had anyone use a G4 sensor either. So - it all worked out well in that my DSN learnt some stuff and I got a sensor!

Only...the first sensor failed. We put it in, it began its warm up, but 30 mins in I got a 'sensor failure' warning. No sweat at that point, we just restarted the sensor. This happened a further 2 times before my rep decided it must be totally dead, and called Dexcom to report it.

I was really disappointed to be walking out the hospital with the sensor connected, but these things happen. So my rep said she would get a replacement one sent to me the next day (yesterday). I was out of the office all day but I swung by on my way home and as expected, the sensor was sitting on my desk waiting for me!

I wanted to put it in ASAP, but I was also wary of rushing it and not doing it properly. I caught the bus home, which felt like it took forever. I needed to go for a short run so I promised myself I'd put the sensor in as soon as I got back from my run - amazing how quick I got out the house with motivation like that! I did 2.69 miles in 30 mins and came home sweating like a pig. I had a bath and then put the sensor in.

Worried I would do something wrong, I did it all step by step, following the instruction manual. Whilst it does have a fair few steps to it (stick it on...remove transmitter key...push in sensor...pull back inserter needle...squeeze sides to release inserter...put transmitter in place...click transmitter in place...remove key that clicks transmitter in...) they all flow pretty smoothly.

I was worried it would do exactly the same as the last sensor, but thankfully not! It picked up signal within a couple of minutes and I was able to see the large bar 'counting down' the 2 hour warm up window almost straight away. After 2 hours it prompted me to enter a BG, and 10 mins later I put in another one. And that was it! It started sending data!

I spent probably an hour just sat there, looking at it every few minutes. It was so cool! I watched myself fall, over a couple of hours, resulting in a hypo. It also woke me up in the night when it picked up a hypo, and I don't think I would have woken for that otherwise.

Speaking of the alarms - they are not as loud as I hoped they would be, but I am a fairly light sleeper, so I did hear all of them. I wore it around my waist last night so that it was close to the sensor, but tongiht I might try it clipped to my tshirt collar - a bit closer to my ears, and not tucked under my quilt!!

It picked up a hypo I had in the night, only 3.3 but I honestly don't think I would have woken up for it if the sensor hadn't alarmed. I wake up - or rather can't get to sleep - with most hypos, but I'd gone to bed really late so was pretty tired and conked straight out.

It also picked up a hypo just before I left for work this morning, and had just alerted me that I'm rising quickly. I've just done a finger prick test - 11.3 - and sensor says 12.5. That's the furthest out it's been so far, so I am keeping my fingers crossed that it just gets better - I hear that after the first 24 hours the readings start to be much closer to finger prick tests.

C'mon little Dexcom, c'mon!

Skydiving

On September 23rd, I skydived for JDRF. It was AWESOME.


My instructor was a really nice guy who put me at ease straight away. I was the only one doing a tandem jump in the flight I went in - all the others were qualified skydivers doing their own thing, including one girl in a pair of hot pants and knee high socks!!! Obviously I didn't get to see what she was doing but she was very happy when I saw her when I landed!

It took a few minutes for the plane to get to the right height - 13500ft!! The qualified people jumped first, including one guy in a squirrel suit which apparently allows you to 'fly'!

The instructor said we could exit the plane in 1 of 2 ways: head first or feet first. I opted for head first. This involved us being strapped together VERY closely (he did warn me it would be the closest I'd ever get to a man with my clothes on, and he wasn't kidding!!), shuffling along the bench in the plane and me kneeling on the floor - at which point he stood up, so I was hanging in the air off him - then he walked towards the door of the plane and literally hung me out the side of the plane face first. At that point I was thinking 'wow/what the hell am I doing?!' 13500ft high up in the air and looking at the ground...

He then jumped out the plane and we began to freefall. The first second or two we spun around, upside down/round in circles and my instinct was to shut my eyes - but I opened them again very quickly as I realised it was silly to miss the view! We stabilised and began to freefall downwards - the instructor had asked me before if I wanted to do some spinning around and I'd said yes, so at that point he started spinning us round and round in circles. It was AWESOME but I had to ask him to stop after a while as I began to feel a bit funny! The noise was incredible, SO loud, the air rushing past my ears. At 6000ft/1 mile from the ground he opened the parachute and we jolted from being on our fronts to being straight upright.

We were above the clouds and he asked if I wanted to do some spinning. He gave me the cords to help him control the parachute, and we spent a few mins spinning left and right. He glided us through the clouds and the thing I'll remember the most is seeing our silhouette on a cloud - but the best thing was, there was a rainbow on the cloud. So we glided through the rainbow and swooped around a bit more before heading to the field to land. His experience really shone through at that point as he landed us directly in front of my parents and grandparents who were waiting at the field!!

I can totally understand why people do it as a hobby, I've never seen anything like it, whizzing through the clouds and then making our way slowly down to the ground! The views were incredible (I had to laugh when he pointed out the local prison...) and I would love the opportunity to do it again...I think I know what I might be asking for for Christmas!!!

I took my pump off and left it in my handbag (with my mum). In total it was probably off for about 30 mins. The instructor reminded me to take it off by asking what it was as I was about to put my skydiving suit on! I had shot up to 14 before the jump...I had predicted I would go high but I was too scared to put a temp basal on. I took a 1u correction and was 11.9 when I got back into the car straight after.

For 2 days after the jump I had tinnitus in my right ear which was unpleasant to say the least.

Anyway...it was amaaaaazing, I would love to do it again (...and probably will, don't tell my mum..!) but the best bit is - including the money my nan has collected - I've raised over £1400 for JDRF!

How is referring someone so difficult?!

Last month I went to see a GP at my GP surgery. He happily agreed to refer me to a local hospital for my diabetes care. I then received a letter through the post a few days later to say I had been referred to the Choose & Book system and I should book my appointment online.

I tried to do this, only to be told there were no appointments available to be booked and I should wait to be contacted by the hospital by today. If they didn't contact me, I should ring my GP back.

Me being me, I decided to cut out the middle man and called the hospital's appointment line. I explained what had happened, and the woman very snarkily told me that ACTUALLY, my GP hadn't referred me directly, so they couldn't book me an appointment over the phone.

I am SO frustrated with the GP I saw. How hard is it to write a letter to the hospital, instead of sending me via the Choose & Book system?! It's not like I want to see a consultant for fun!

The other amazingly annoying thing is that I am due to be upgraded to the Animas Vibe, which Animas have said they will do as soon as I have an appointment with a consultant (having the appointment means I can see a DSN beforehand, and the Animas rep will set me up on the Vibe). So this means I am being delayed again onto getting the Vibe!

Arghhhh!

Sailboats.

From Our Diabetic Life.

"Diabetes is a sailboat. 

13 years ago I was told to put my child in a sailboat. Alone. 

He was to journey out to sea and I was not allowed to escort him.

You can imagine the fight I put up. I yelled and pleaded. I dropped to my knees and bargained with God. I had a fit. But alas, my flailing was fruitless...he was literally taken out of my arms and thrown into the boat. I was given no choice. He had Type 1 Diabetes and there was no going back. He could not stay on shore. He could not live without the boat...it was part of him now.

I watched the boat go out to sea and I cried for what felt like forever. The world seemed to be in constant motion, while I was stuck on pause...mourning his separation from the shore.

The viciousness of the waves were horrifying.
My child was helpless.
I was helpless.
I would have done anything to be on that boat. I willed his diabetes to enter my body so I could switch places with him. But apparently, that isn't how it works.

Unfortunately.

I was given two tools to help my son. A telescope and limited control over the weather.

I have vigilantly had my eye set to that telescope for 13 years. There have been long stretches when I wouldn't leave the scope. I wouldn't shower. I wouldn't eat. 

I have had comments throughout the years that my attention would be better placed somewhere other than the boat.

What they don't understand is that my child is on that boat. My heart. My soul. How could I ever walk away from my scope?

My one advantage is, with insulin and food, I can sometimes control the weather. I can smooth the waves and bring him close to shore. On those days it almost feels he is on land with me. On those days we dance together and laugh, and joke that the ocean has nothing on us.

But other days the storms come in out of nowhere. The black clouds close in and the numbers ebb and flow with the powerful tide. On those days, I watch my son ride those waves and I spend the day at my scope...determined to change the color of the clouds. If his boat capsized...I don't know what I would do. 

Sure...he is above water. Sure...he is surviving. But on the stormier days his sea sickness weighs so heavy on my shoulders, I'm sure I am going to run out of strength, and one day drown into despair myself.

My son has grown up on his boat, and I am in awe every day of his constant vigilance, and his nimble control of his craft. He is an able captain now. He can hoist the sail, he can watch for the storm clouds. He can batten down the hatches. He can steer that boat away from immediate danger...he FEELS the sea. His intuition is inspiring.

Three boats I have set out to sea. It does not get easier. Every boat I have released has killed me a little bit inside. My husband and I live our lives on the shore waiting for storms, hoping for sun...watching each and every wave.

It is exhausting. It is tedious.

But on the summerlike days, when the boys drift closer to our reality...they hitch their boats together. 

With their boats abreast, we can sit together and watch the sun set on the horizon and know that we can do this. We see the other boats adrift in the ocean, and their resolve and optimism lifts our spirits.

A bit ironic that the most amazing views...the most amazing perspectives...can be seen only from a boat.

No, it isn't easy. It isn't fair. The children with their feet on land are behind us, ever present...running around with no cares.

They don't have an entire craft to navigate. If a storm comes in they can simply get in their cars and their parents can drive them home. 

They are not required to have constant courage or patience. They are not required to grow up quickly to take on captaining their own ship.

They are free to run.

Freedom. A gift my boys yearn for.

Freedom from navigating. Freedom from weather.

Diabetes is a sailboat.

Adrift in the sea.

The boats rock gently tonight. I can see my sons at the helms. Their silhouettes against the nights sky. 

Each one, every bit a hero.

We pray that one day they may set their feet on the sandy shore and rest.

That one day they may find respite from their journey.

Type 1 Diabetes is a sailboat.

And 40 new sailboats take off from the shore, every day. 

They aren't just boats underway with numbers in their wake...they are families lives, changed forever. 

They are significant.

Every single sailboat is significant.

And every captain, an inspiration."

Bad advocate.

Today I was a bad advocate. I'll put my hands up and admit it. I didn't deal with the situation in the way I could or should have but we all have our limits - and I guess mine were reached today!

I went to get my hair cut this morning. I like my hairdressers because they have a 3D, upside-down desert theme thing stuck on their ceiling. It's weird but keeps me entertained.

I really, really hate having my hair cut for one huge reason: the small talk hairdressers insist on. I know it's part of every hairdressing trip anyone ever makes, but it makes me soooo uncomfortable and awkward. Anyway - the guy asked me about my weekend and I said to him I'd been to a charity event yesterday (Flying With Diabetes). He asked me about why I went etc, and told him I have type 1 diabetes. The following is a summary of the conversation that occurred.

"Have you tried a diet?"

"No, type 1 diabetes can't be controlled using diet, I'm insulin dependent."

"Oh but you should try this one - it's called Simply Raw, people came off insulin in a week." (A quick googles tells me THIS is what he's probably talking about.)

"The people taking part would have had type 2 diabetes, which you can use diet to control."

"No, it was definitely type 1 - they came off insulin." (at this point I was ready to walk out, if only he hadn't been halfway through the hair cut...)

"People with type 2 also use insulin as a treatment, and I can promise you they would not have been type 1 - I use an insulin pump to give me insulin - people with type 1 would die without insulin."

At this point he backed down with "I am sorry".

I was really wound up by his comments - in his defence I guess he really didn't know what he was talking about, but it frustrated me so much. I got kind of shirty with him when telling him it was definitely people with type 2 and he then spent the rest of the hair cut trying to be chummy chummy with me. I could have handled that so much better, but I didn't.

Sigh. I'll keep going back, because they do great haircuts (although I wish I'd had it a bit shorter...maybe I'll go back and get them to reign in the longest layers).

Running

Argh! I did it! I got a place running the London Marathon 2012 for the Juvenile Diabetes Research Foundation!

Now...help! I'd appreciate keeping in touch with people who run regularly.

I am not so scared of the distance, more of the toll it is going to take on my diabetes. I'm also pretty excited to see what that toll is; how is my body going to react? I feel that I can cope with the stresses and pain of the running...I'm more concerned with the highs, the lows and everything in between.

I have trainers. I have shorts and tshirts to run in.

I would love to invest in an mp3 player of some sort; I want an ipod but my uber tight budget won't allow for it. The one I have at the moment is kind of okay, but is small and not great for setting up playlists and stuff. I just read the post Chris wrote about music and running, and I guess this is another curve I'll be learning; what motivates me? Do I want to hear the sound of nature London as I run? Would a playlist of music be best, or a load of podcasts?

I've got 3 people who have volunteered to run with me, so I have no excuses. I also have a park pretty nearby, and I imagine I'll be getting to know it very well very soon...

I have a short attention span and get distracted really easily, and I know I will need to keep mixing things up to keep myself going. When I get onto doing much longer runs, I think I will start investigating getting out of London to do those runs. Brighton? Norfolk? Kent?

And so it begins...

But I'm only 23.

I've just had possibly the most depressing meeting of my life: a meeting to set up my pension. It was incredibly dull, but at least now I know I will have some money around when I retire.

It made me feel a bit funny on the inside though, talking about retiring at 68 and the possibility of that age rising. Having lived with type 1 for 20 years, I've always been told my life span is roughly 15 years below the average person - although that being said, recent research says we will live just as long as any other (source). It's quite hard to get out of that way of thinking though, having been told it so many times; so when the pensions guy talked about retiring at over the age of 70, all I could think was "but I probably won't live that long."

And I know you can say that everyone has a chance of not living that long, and I could be hit by a bus tomorrow and not live long enough to see the complications of type 1 diabetes.

But it's always in the back of my mind.

(and another opportunity to plug my fundraising, yay! Please consider sponsoring me - on September 23rd I will throw myself out of a plane, also known as skydiving, to raise funds for JDRF. JustGiving takes donations from wherever you live in the world - an American friend of mine donated £20 very kindly, so don't be put off by that small factor! My donation page is at http://www.justgiving.com/siobhanskydives - all the money you donate will go straight to JDRF, as I have paid for the skydive myself.)

7 months!

I worked out that tomorrow will be 7 months since I moved to London. 7 months! It feels like I have been forever, and I mean that overall in a good way.

London is a brilliant city. There is so much to DO! I haven't done half the stuff I would like to yet. I enjoy the fact I could never get bored, in theory. There is stuff to do every day, every evening - whatever the weather. Last weekend I went to Brick Lane and drank kiwi juice and ate amazing Ethiopian food with my aunt and uncle. I love going to markets - I can't really afford to buy something every time, but they are great to pass a few hours with. I especially love food markets with amazing vegetarian food!

I've been reverting back to being vegetarian over the past couple of months and am now officially, totally vegetarian. I need to do some food shopping and learn how to make the amazing marinades and sauces I taste in the food markets!

I've also been looking at getting a hobby of some variety - I think I am going to sign up to a block of ballet lessons. I did ballet when I was a teen and got as far as buying pointe shoes (but had to quit and never got the chance to use them). I love how hard a work out ballet is and how much fun it is. Just got to wait for payday so I can pay for it! It will also help with my overall fitness levels...which if I'm going to run that marathon next year, I really need to actually do something about!

Speaking of running the marathon, I have a couple of fundraising ventures this year. All in aid of JDRF.

The first? A skydive!

As someone who isn't so keen on heights, I figure the best way to get people to dig deep for JDRF is to throw myself out of a plane!! Type 1 has been in my life for 20 years now, and I'd really like a few years of my life without it - so please consider sponsoring me. I have paid for the jump myself, so all the money you donate goes to JDRF.

I'll be jumping on 23rd September, at Sibson airfield (near Peterborough, England).

http://www.justgiving.com/siobhanskydives

Thanks!

Memory like a SIEVE.

Seriously.

I just can't seem to hold any information at all at the moment. It's like people tell me things and they go straight in one ear and out the other. My attention span is at the very worst it has been in a long long time. I am doing everything I can to get around all of this; writing lists of things to do, making notes of conversations I have, so on so forth.

And I'm still struggling. It's really bothering me - it means I am nowhere near as efficient as I could be! I want to be productive and on top of things, yet I am finding it pretty hard. 

I can't tell you the amount of times this week I have sent follow-up emails trying to sort things out/arrange things/checking details of discussions - because I have forgotten what I have discussed in meetings etc. The main reason I can't tell you is because I honestly can't remember! 

If anyone has any suggestions on how to make this easier, please tell me - no matter how big or small! Is there anything I can be doing to help myself? Should I invest in anything? Help! This has been getting progressively worse over the past couple of weeks.

Thankfully I have not forgotten anything type 1 wise - I always bolus, test etc. I suppose a little part of me is worried that one day I might!

An open letter to HCPs who do not 'get it'

Before I start the letter, I'd just like to point out that this is aimed at those health care professionals that do not seem to have an inkling of what it is like to live with type 1. I know there are some amazing doctors and nurses out there who are just fantastic...this is not for them. I've been thinking about this topic a lot as I am looking to move to a new team here in London, and this is what I imagine I would say to them if they turn out to be non-getters.

Dear Dr/Nurse Who Does Not 'Get It',

I've been living with type 1 for just over 20 years now. Having been diagnosed at the age of just 2, that's the whole of my life as far as I am concerned - I don't know what it is like to live without it. I'd really like you to remember that sometimes; I know no life without this thing. I have no living memories where type 1 has not been part of them - I can't imagine life without insulin vials, test strips and annual bloods. I can't imagine doing any kind of exercise and not having to plan it out and feel like I'm doing an experiment on myself. I definitely can't imagine looking at a plate of food and not worrying about what it is going to make me feel like in an hour or two. I have no idea of the concept of a 100% carefree, worryfree childhood (I was told from a young age I would die of a complication of type 1).

The thing is, when I walk into your room, I sort of need you to forget about everything else, just for a few minutes. I'll discuss my numbers with you and any problem areas I need a hand in ironing out. I'll tell you how much living with this thing drags me down some days. All I'm asking is that for a couple of minutes you attempt to put yourself in my shoes, instead of thinking that throwing numbers or statistics at me will help.

After 20 years of this game, I'm pretty down with it. My numbers are pretty predictable (which does not mean stable); my body (and when I say body please read: my body AND my diabetes) behaves in a way that I have come to know almost intuitively. That isn't to say there aren't some surprises along the way - but I'm pretty in tune with my body. So when I present an issue to you and you give me a textbook response, please don't be shocked if I ask for alternatives. I've probably tried those text book suggestions; I don't get to see you very often, so I have to have other resources. (here's looking at you, DOC).

I need you to trust me, too. I need you to know that I know my body best. I need you to give me the credit I'm due for doing this diabetes thing every day. I'm pretty open at trying new things and listening to suggestions; I'll always listen to what you say. Please don't be afraid if I challenge you on something; I need you to hear my thoughts on what you are saying.

I remember the first time I felt empowered in an appointment. Shortly before the appointment, age around 10 or so, I had asked my mum why I couldn't have a pancreas transplant (which in my head, was the answer to this whole type 1 problem). Knowing my appointment was coming up, she told me to ask my consultant, which I did. He was fantastic and explained to me at a level my 10 year old self could understand; that the thing with type 1 is that even if I had new insulin producing cells, those would be attacked too. Plus the amount of drugs I would have to take to keep my body generally rejecting them would be too much. Looking back, what strikes me about that conversation is the way he did not patronise me; he did not talk to me as if I'd asked a stupid question. I'd really like to continue feeling empowered and for you to be willing to share your knowledge with me.

I also need you to appreciate, not necessarily understand, the total fear that can come with living with a chronic, life long, can-kill-you-when-it-wants kind of condition. I am totally terrified of what will happen in the next few years in regards to my long term health; will I see complications? Are my kidneys going to be okay? Will I eventually end up with eye damage? The things I hear, mainly from the DOC, say that actually I have a pretty good chance of not developing complications. But on the other hand I could develop all of them. It's why I'm pretty anxious about my control.

I'd also love it if you could have a little appreciation of the word 'burnout'. This does not mean I am noncompliant and I don't care about my type 1; actually it's usually caused by caring TOO much and feeling very much drowned in living with it. It's the time when I really need some support and some help.

I've been playing this type 1 game for 20 years. It's basically a damage control game; I need to minimise the impact of my dodgy pancreas on the rest of my body. I can't do that alone and whilst I know that unless you live with type 1 you won't be able to fully understand it, I just ask for a little appreciation. Talk to me! I'll tell you what it's like (it's hard). I'll give you my honest and frank opinions on living with a condition like this (doable but so much more bearable when you have support and understanding. Also, scary).

With hope,

Siobhan