How I went from an A1C of 81 (9.6%) to 62 (7.8%)

From this...

I wish I could tell you guys a magic cure for this. It didn't happen overnight. In fact, this drop in A1C took just under two years. Part of it I can attribute to switching to an insulin pump but on it's own an insulin pump isn't a magic cure. I would like to highlight that before this happened I made a 10point drop on my own. The pump is great but you do have to be prepared to put the work in. 

Pre Pump

I've talked about this before here but I found my diabetes managed to be like one big giant jigsaw puzzle, you try one piece and if it doesn't work you try another. That is what I was doing to start with. The first step came from wanting to have an active role in my health care. I had gone through the last 5-6 years, floating through as a passive participant in my health. I had terrible habits but not so terrible that it was unmanageable. My blood sugar levels were dangerous in the long run because they were contributing to a high A1c but in the moment I was able to live. The only point in which I needed medical intervention was when I ran out of insulin one weekend and I thought I would be okay till my doctors appointment on Monday. I wasn't and this showed my lack of knowledge about how intrinsically important insulin is. I went into DKA at the end of 2010 and came out of it being prescribed lantus which evened out my blood sugar levels. In any event, I was still running higher BSLs than I should have been and  I was consistently tired, grumpy and struggling to get out of bed in the morning. I put this down to stress and a heavy work load. I also continued to blame myself for these high levels.

And then halfway through 2011 I got sick. I rarely get sick and this one just completely wore me down. It was a combination of being run down, having the flu and a chest infection. I started paying a bit more attention to my levels and found that they weren't making sense even when my sickness go better. I emailed the Diabetes Nurse Educator and the hospital and organised an appointment to see her. From there we started working on the jigsaw puzzle. We adjusted my nightly lantus dose, my insulin to carb ratio, my correction factor, my insulin sites (I was asked to stay away from the left side of my stomach), and it felt like everything else under the sun. I even wore a CGM for a week (loaned to me by my local hospital) I was trying so many different things and trying to keep a brave face of it. Blogging helped but it did get me down to not see a better result than a 71 (8.6%).  Eventually the idea of a pump was brought and I was slightly hesitant at first. And then I had to go through an approval process with Pharmac which was terrifying. I did all this research on pumps and it made me really really want one!

Post Pump and becoming an active participant in my health care!

I've talked a little bit about my experience with my Animas Vibe here but one of the positives of a pump was my acceptance of my freaking enormous dawn phenomena. I now know that I need 3 times as much insulin during the hours of 2am and 6am compared to what I use during the day. When I discovered that it lessened off some of the intense blame I had been carrying for the past few years. With a dawn phenomena like that I was never going to be able to manage on injections. And that brings us to August 2014 where my latest A1c is 62. I know that I have a way to go before I am in a safer range but after 8 years of sitting in the 8 and 9 % range. I think that a 7.8% (or 62) is a pretty good sign. There was something amazing at looking at it and realising it was my lowest number since I moved to Dunedin in 2006. 

I can attribute my better levels to my discovery of the Online Diabetic Community. Diabetes is so isolating that it is damn great to have someone to share it with. 

The Year of the Horse - Galloping by Diabetes Style

The days are flying by. I remember the older people in my life always used to say that the days go quicker as you get older. Younger me always thought this was stupid. However, 26 year old me says slow the heck down world.

May was a pretty great month in terms of Diabetic things. I wrote all 7 blog posts for the 2014 Blog Week, I tuned into the Diabetes Hope Conference, My blog got a shout out from Amy over at Diabetes Mine, I got my lowest a1c in 8 years and to top it off, I got renewed funding for my insulin pump consumables. That is a whole bunch of great things!

There's more to come with June too. I'm determined to continue to get amongst the DOC by reading and commenting away on blogs. I'm also starting training for a half marathon... keen eyes may have noticed my exercise log on my blog. It lists my training runs and some data I've done around it. Going to put up a separate post about this my reasons why I want to run a half marathon and how I'm feeling about it.

Feel a little like I'm caught up in whirlwind but I am enjoying it so far!

Year of the Horse I tell you! Credit to Artist Centauressa

Diabetes Blog Week 2014 - Poetry Tuesday

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

Click for the Poetry Tuesday - Tuesday 5/13 Link List.

I've written a couple of poems in the past. I don't know if I could find them now as I suspect they were on a long gone computer. I do remember I saved them in a folder and then made the folder invisible, I felt pretty spy like doing that. 

I do recall reading back on them that they were pretty dark and depressive. They were written at a low point during my teenage years. When I saw this topic I immediately did not want to do it. I thought that I would choose one of the wild card topics. However, when I looked at the topic again this morning I thought, hmm maybe I can write a Haiku - so I googled it and found an explanation on Wiki How.

There's some context to my Haiku - the word relentless came to me and just fit with how I was feeling about my diabetes management. I've been on my Animas Vibe for 6 months now and feel like I'm walking a tightrope. In order to qualify for continued funding of my pump consumables I need to show a 10 point drop in my Hba1c, that's about 0.9% drop in the other units. 

So today, I received the news that my A1c has dropped 14 points from 76 to 62 or 9.1% to 7.8%. So happiness for me! Glad to see the work is paying off. So this Haiku shows that change, from earlier in the day when I the word relentless resonated me so much to when I felt like the changes I made were seeing results. 

So without further ado.... 

Relentless Diabetic Puzzle

Turned a corner

The Changed Wind appears to blow through

Pharmac and Insulin Pump Funding concerns

I'm worried about the funding for my insulin pump, or more specifically the pump consumables. As far as I am aware, an application for funding was sent off in July/August last year. The application listed the last three of my HBA1cs, the lowest of which was 73 in the new units, or 8.8%. I received 9 months of funding for pump consumables in August and started the pump in October.

In the middle of last month (March) I had an appointment with my CDE. My A1c was 64 - or 8% in the old units. It was actually the lowest it had been in my 8 years with my current District Health Board. I haven't always been so intensive with my management. It was interesting to look back on those results, there was a couple of results that were so cringe worthy that I didn't want to see but for the most part my control has stayed in the 70s for the past 8 years. I hadn't realised that so seeing that 64 was even more of a win. What's more, is that I knew I could do better than this. In February the average on my meter was about 12.5 mmol/l, I had a couple of unfortunate experiences where my site or tubing pulled out so I woke up in the 20s with ketones. I was also using teflon cannulas with my Animas Vibe pump and found that on the 2 or 3rd day I would sky rocket in my BSLs and it would take so much insulin to bring them back down. When I switched to metal cannulas, the results were amazing. The March Average on my meter was 8.5 mmol/l - which would equate to about a 53 HbA1c. So at that meeting, my CDE was a bit puzzled at what she could do to bring down the 64 lower, based on a few days worth of records that indicated I was running pretty good averages. I explained that I'd changed cannulas and was certain that the month of February would be artificially putting my Hba1c higher than it was. She was happy with this, I was happy and I left feeling positive and overwhelmingly happy at the pump. We organised I would get an A1c test done in yjr beginning of May and that my CDE would put through the application for continued funding in Mid May.

And now we come to the month of April. The average on my meter is 11.1 mmol/l - which would equate to an Hba1c of 70 or 8 %. To qualify for continued funding I need to show a 10 mmol/l drop to a 63 I was on track for this in March but now? I'm scared. I'm been trying to figure out the reasons for the increased Bsls - I had been extremely busy at work, I had a family bereavement, I thought I might be getting a bladder infection...many things which could contribute. Freaking stress. So I'm scared I'm not going to qualify for funding.

So my plan of attack is:
- Increased exercise
- Recording BSLs and sending them to my CDE
- Healthier eating

It looks easy when I put it like that. I think it's been working though, I tweaked my Insulin Sensitivity factor a couple of days ago and I am noticing lower morning BSLs. I feel a lot better writing this all out and there is another thing that could be helpful to me. I received funding in August last year but didn't actual start on an insulin pump until October, so in theory I haven't actually had 9 months of treatment on a pump. My CDE has said that will be enough to get an extension, so I imagine that's the next step.

It's nerve wracking thinking about all of this and it has been on my mind a lot. Writing it down has been cathartic for me. If there is any one else having trouble with continuing their pump funding I would love to hear from you.

S x

From where I was, to where I am now. Some thoughts

One of the things I really like about having this blog is that it is an online document. It's a memory of where I have come from and makes it easier to compare my past to where I am now. I took a look back recently on my blog posts and compared them to my A1C levels. I just want to jump in here and say I think there is a danger in placing too much importance on your A1C result - it is only a number after all. It's true that  a "good" A1C might be for "bad" reasons such as not necessarily catching swinging in blood sugar, the bouncing from high to low. But for me, I think it is interesting in using the number to compare my state of mind and my diabetes management. A lot has changed for me.

In August 2012 I wrote my first post and my A1C was sitting at 81 or 9.6%. This was the start to blogging and I was so fresh faced. I genuinely thought that if I tried hard enough, counted correctly and injected the right amounts my A1C would come down. That didn't turn out to be the case. Early on I identified that a couple of key things for me were to ensure I was testing more often and testing when I knew I was high to exactly how to correct it. I focused on not guestimating!

January 2013 I was at 77 (9.2% in old units) with my A1c test. At the time I was blogging about New Years Resolutions, struggles and this idea of a jig saw puzzle. I inspired by the changes I had made, by the DOC and by the journey I was on. I really like the analogy of Diabetes Management being like a jigsaw puzzle. It's an ever going journey but sometimes, just sometimes if you have the right piece and the right angle then it fits into place. The one big thing about jigsaw puzzles that is different to diabetes is that you can finish a jigsaw puzzle. You can't finish the diabtes jigsaw one unfortunately.

I was fairly sporadic with my blogging after that. I found myself turning to it when I had thoughts swirling about in my head and I wanted to get them on paper. Sometime in January/February I was looking at booking tickets to the States to visit my other half. I also looked into travel insurance, it was one of the first times that having less than well controlled diabetes management had a real time, right at the moment practical affect on me. One of the insurance companies I looked at stated that they would only cover Type 1 Diabetes as a pre existing condition if a person's A1C was under 75. At that point (Jan) mine was at 77, however in Feb as I was looking at all these insurance things it had dropped down to 73 (8.8%). After sitting in the 9s for the last 6 months, it was a relief to see it come down to the 8% range. With healthcare being publicly funded in NZ I had never, not to my knowledge anyhow, had an experience where I couldn't access something because of a high A1c. The experience with that insurance company having that clause wasn't particular shocking for me, but did give me food for thought. I ended up going with a different company, not because of that clause but because I felt they had more comprehensive coverage.

In May 2013 I wrote a blog with this sentence in it:

"Feeling better about my levels seems to help me feel better about who I am so I can only hope this sense of self ease continues."

What a great head space I was in then? Probably something to do with seeing my partner for the first time in 6 months and having a 5 week holiday. I think it also represents the change in myself, about me not feeling like I needed to hide my diabetes. A realisation that disclosing Diabetes didn't make me weak or vulnerable. My A1c before this blog post was 72 and a few weeks after it had gone up to 74. Some time around here my CDE mentioned an insulin pump, just briefly. But it was sowing the seed. I remember not being too concerned at this A1C increase, but my post of June 2013 details some of the thought processes I had around eating, carbs, low blood sugars. What did happen in June was my experience with a CGM - I was truly heartbroken to see those overnight lows sitting there without my feeling them. It was scary. At that point I felt a lot like I had hit a brick wall. It was so fresh, so raw the emotions tied up with that experience that I didn't blog about it for a few months later. Again, more discussions around insulin pumps. These aren't documented in my blog. I think something about an insulin pump made it seem like it was a far away magical device. When I was approved for 9 months initial funding in August, I chose not to blog about it until September.

But I kept on, keeping on. My testing by this point had gone up hugely, since I was seeing my CDE on a regular basis I was taking food diaries here there an everywhere. It kept me accountable though the amount of paperwork burnt me out eventually. I think at one point I had done 20 days worth of food diaries. At one of my appointments my CDE said something to me that took months to sink in. She said that I was doing everything I could and that it was up to her now to figure out what would work for me. Part of that was the Insulin Pump and so an application was put in for funding. Sometime after being approved funding I received my lowest A1c of 2013, a 71 (8.6%) in September.

I started my pump in October and it was and still is a big learning curve. One of my biggest take away lessons? I have a significant dawn phenomenon, between the hours of 2am and 5am I need almost three times the amount of insulin that I need during the day. Targeting that is not possible on MDI. There's still some part of me that says, I could have tried harder on MDI and it would have resulted in better results. But really? I did, I honestly did. The proof is in the pudding as some might say. After 3 months on a pump my A1c is 65 or 8.1%. That one was taken in January of this year. I am due for another one in a couple of weeks and I'm actually looking forward to the test.

My current head space? Pretty good. Feeling comfortable. I am happy that the numbers I am seeing on my meter seem to make sense these days. More often than not, I am not correcting a blood sugar level. I'm waking up in the 6's rather than the 12's. I test my blood sugar now because I want to. I'm interested to know where I'm at rather than just cringing. It's a life long journey but right now I am happy with the speed and direction it is going in.

Starting My Animas Vibe Insulin Pump

I was connected to my lovely blue Animas Vibe on the 14th of October 2013. It's been almost three weeks and I feel in some ways I have settled in quite nicely to it. I thought I would take the time to run through what it has been like for me and how I found the training.

As I mentioned in another post I was lucky enough to "meet" Kaitake another T1D from the North Island of New Zealand. She posted a couple of super comprehensive posts about her pump start, see part one here and part two here. Her pump training was a couple of weeks before mine so it was really reassuring to read about someone else's experience with it.

For my training, there were three diabetics, two nurse educators (who popped in and out), our pump trainer and I had brought along my other half for the morning of Day One. I felt a little bit silly being the only one having a support person but I am 100% happy he came along. It wasn't because I needed support but because I wanted him to learn about the Insulin Pump and how it works. Afterwards he said to me that he thought it was a really great idea for him to come so I was so so glad that he felt happy to be learning about it.

Our first step was the introductions and the next one was to put in an infusion site! It seemed like a pretty big jump, I thought we'd be talking about the pump for a bit before doing something practical. Three of us in the training were using the same infusion set and the other was using a manual inserter. I think I could possibly look at using a manual inserter in the future but for now I am happy with my Inset 30. The trainer stuck one on her first - which I think is a fantastic teaching method. You shouldn't be prepared to teach something that you're not prepared to do yourself. I was the last to do mine and it took me a few times before I actually squeezed the two ends and put the set in.

Infusion set  and line 

You can't see but the needle on it is quite long which made it a wee bit intimidating for me. However, it doesn't all go into your skin. I've changed my set about 7 or 8 times and it's still a wee bit scary for me. It takes a few seconds for me to calm myself down and press on the set to  pop the needle and cannula out. It actually makes a rather loud thwack noise too! Putting it in the first time was nerve wracking for me, I'm not a fan of the unknown. Once I knew what it was like and the pain of it, it became much easier. It's not that painful either, just like a quick pinch.

The next step was filling the cartridge. We watched the trainer fill a cartridge once and for the next step we all filled a cartridge with "pretendy" insulin (it actually said that on the vial) and then we all did it for real. There's a lot to filling a cartridge a

AND THEN - I was connected about midday on the 14th and I have been ever since.

Except for when I shower - I disconnect then. And for... bedroom activities. ;)


There's obviously a lot to the training. We went through Insulin Sensitivity Factors, Insulin On Board, Temporary Basals, Insulin Correction doses in the absence of ketones, Correction doses with ketones, Sick Days etc.

These are the two giant booklets that come with the pump

And even after 1.5 days of training there is still more - these are the advanced features which I am yet to learn about. I really wanted to know about them straight away but I think they refrain so you can get to know the pump without being overwhelmed. It totally makes sense but I had already read ahead and wanted to learn about the EZ Bolus features. My DNE is happy for me to learn about them when I feel ready so I have an appointment booked this week for the pump trainer where she'll go through it with me.

I must say that I was really happy with the trainer. She was friendly without being your best friend (you know how annoying that can be of strangers?) and approachable (feel free to call at any time) and realistic (Please don't call to order consumables off me after hours).

I am loving the pump but there are down sides, extra stuff to carry around, extra testing, the need to be extra careful with carb counting, the need to find it somewhere to go on your clothes. But I think these all outweigh the general ease of not doing injections 4-5 times a day. I'm seeing it make a difference on my day time numbers and seem to be stable a lot more often through the day. I'm struggling a little bit with overnight numbers but working on that.

I'm excited for what's to come on life with a pump :)

Animas Vibe? Hello new friend!

I'm connected! Excuse the poor photos. 

I still can't believe I have this device. I feel lucky and grateful. And happy and excited to see the difference it makes on my blood sugar levels. 

This is the pump connected to my belt right underneath my.....boob. 

My current Basal Rate - these are going to need some tweaking.

I'll write a longer post at a later date. I'm feeling a bit sleep deprived at the moment and am home from work ready to nap. 

Any one have any specific questions relating to a pump start? I want to record my feelings/thoughts/reactions as I know looking back it'll be the start of something new and I want it recorded :)