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.

My Story

Living life as a type 1 diabetic is a bit of a rollercoaster. So I thought I'd blog about it. It seems appropriate to begin with my story.

I'm 24 years old, living in New Zealand. Recently graduated from University, working full time for the first time in my life (well apart from summer holidays) and I will celebrate my 9th birthday of being diagnosed later this year.

And that, let me tell you is craazy. How has it been 9 years? How is it that I still struggle to test before every meal? That my HB1AC has never been that good? Life has been pretty full on for the last couple of years. But now, I finally feel settled and happy. I've been reading a lot of diabetic blogs recently and found that I was wanting to tell my story. My own crazy experiences, the awkward conversations, the ridiculous overdosing on sugar when you are in the midst of a bad hypo, the hypo's where I've had paramedics called, that time I ended up in the Intensive Care Unit because I thought it would be okay to skip my insulin. I've been through a lot and I want to tell my story. I think that ultimately, telling others about my experiences might help me learn something about myself.

Welcome.
S x