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. 

Diabetes Blog Week 2014 - Mantras and More Thursday

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Click for the Mantras and More - Thursday 5/15 Link List.

I'm a bit of an introvert but people people people get me through. After about 8-9 years of not having any D Friends in real life I have one now. There's something comforting about knowing if I text her a rant about my blood sugar levels, she'll just get it. 

There's also the love of my life who doesn't know what it's like to live with Diabetes but certainly knows what it's like to live with someone who has Diabetes. He's always happy to listen, let me cry on his shoulder or give me a hug. 

I also use this blog as a mechanism to get me through. Writing about what's going in my mind helps me to process it, it can sometimes make a diabetes fueled rant clearer. 

And lastly I could not get through without the DOC - I don't tend to ask a lot of questions or participate in discussions but I do read read read. Thank you to everyone out there for sharing. It might be that your visitor stats list is low but I hope you take note that there are people out there reading! I am one of them. 

And what is my mantra?

One day at a time. And in the times where the days are a struggle? It's one blood sugar level, one injection, one site change.. one at a time. Step by step. 

You can do it.

Shonelle xx

On a roll....

I've just woken up to my third day in a row with perfect BSLs. It seems thr change to my correction factor is working like a charm :)

Mon: 6.1
Tues: 6.6
Weds: 6.4

To give some context, the night before these tests I ranged from 8-15mmol/l.

Win! I think my issue now is making sure my carb to insulin factor is right... getting there!

Reflections on the last few months

In some ways I feel like I've got a bit of the old "Diabetes Burn Out" going on. In other ways I know I don't. I'm still taking ten times better care of myself than I was 4 years ago. I'm testing 4-8 times a day, correcting, carb counting, injecting. I'm doing everything I need to.

For me, this feeling of Burnout, of hitting a wall, of smacking my head against said wall stems from trying as hard as possible with my Diabetes management and not getting better results. Cate says I need to stop beating myself up about it. But it's so damn hard. I've really struggled with my feelings. I've struggling to let myself be okay with numbers between 6 and 12 mmol/l (108 and 216 mg/dl). But that's what my body needs right now in order to get back my awareness of low blood sugars,

After the week long trial of the CGM, I was supposed to take diet records for the following week and send them to Cate. But I couldn't bring myself to do it. I'd literally recorded every thing I ate for the previous 20 days and to write everything down again was not something I could face. So I didn't. It felt really great. I was still testing and taking the right amount of insulin. Just the fact of not having to sit down and type it all up into a record sheet made me feel so free and liberated! I think it was my mini "Take that" to Diabetes. The holiday from diet records was one thing I could do that would allow me some of my sanity back without compromising my health.

Looking back on the last 1.5 months since I did the CGM trial I could see in myself a change of mindset with my Diabetes management. I no longer feel hope when I leave appointments with my Diabetes Educator. I've talked about this before, that I used to feel hopeful and inspired that we were together on this Diabetic Jigsaw Puzzle. I used to feel that we were chipping away at it and that things were getting better. I'm sensing she's feeling a bit confused at what to do with me. She took one look at my most recent records from last week and said "Well, we're not winning here are we?" I think she also said exactly what I needed to hear. That I needed to stop beating myself up about it, stop blaming myself for my levels because I am doing everything I should be doing. There's a small part of me, hidden in a back corner of my mind that says I still need to work harder but I think it's okay to have that there. You always need to push yourself.

Our latest development in terms of my management is to take my novorapid at least 15 minutes before eating, not correcting until 3 hours after breakfast novorapid and exercising 40-60 minutes a day. The first two are to target some after breakfast/before lunch blood sugars I've been having. The last is a given and something I've been told for years but I was basically told what I'm currently doing isn't enough. It has inspired me to start a sticker chart and put a sticker on the days where I do more than 40 minutes of exercise. So far for August I have 3 stickers in 4 days so I reckon that's a good go of it.

I think I've wallowed in my own self pity for long enough, I need to change my mindset. Exercising more is bound to help but I need to get that hope and drive back. I think wanting it is a start.

Fingers crossed anyhow.


S

My Experience With A CGM

I wrote this blog post in June, but then life got in the way and I never quite finished it and got it published. Because of a range of things I'm finding that I really want to start writing again but in order to do that it's better to go back to where I left off... So here we go.

As someone who has a chronic medical condition, I am extremely lucky to be living in a country where health care is subsidised. Each one of my prescriptions costs me $5 for a three month supply, so all in all I probably spend $15-20 every three months. This includes Novorapid, Lantus, Needles, Test Strips etc. I don't have an insurance company breathing down my neck telling me how many times I can test a day. Because of all this, I don't have health insurance. For someone without a lot of expendable income, access to things like Continuous Glucose Monitors and Pumps are hard to come by. Pumps are funded in certain situations but for the most part the majority of New Zealanders are on MDI (This is my own anecdotal view!). I was quite excited to find out that the Health Board in my District actually owns a CGM that they lend out to patients for week long trials. There was a fairly long waiting list but as I was going to be out of the country for 6 weeks it wasn't too much of an issue. The wait time felt like nothing as I was holidaying for it! 

The CGM I used was the Ipro2 - It's unlike most CGMs I read about online in that it doesn't have a real time monitor to go with it. It records data on the sensor which you can then plug in to a computer and have a look at the data. 

I was quite excited about the experience as I'm working toward a better a1c and overall control. I know that when I wake up in the morning and my number is in range I feel better. It's part of a big over haul that I've been working on for the last 12 months.

The results were interesting and in some ways completely expected. In other ways they were completely unexpected. 

The days where I hit 20 were something I completely expected. And I wanted to use this CGM trial to really knuckle down how my insulin works, because sometimes I just feel like it doesn't. Take the light blue line which spikes around lunch time. Why is this? I know there is insulin in there! I thought doing this CGM trial would allow me to get some insight on how my body responds to insulin.

However, all those thoughts surrounding my high numbers went completely out the window when myself and my lovely Diabetes Educator saw that I had prolonged overnight hypoglycaemia. That was something that completely blew me away. It was terrifying. We had a long talk about it and Cate (my Diabetes Educator) knocked back my Lantus and gave me the spiel about making extra sure I was testing before and after driving.

I also got my most recent A1c back and it had gone up 2 points from 72 (8.7%) to 74 (8.9).

In some ways hearing about that increase in A1c was worse than hearing about prolonged overnight lows. I really felt like I have been trying so damn hard. And then having the overnight lows? To me it was a case of 2 steps forward, 10 steps back.

Travels and Levels

Anddddd I'm back! At least for this post anyway. The past few months flew by and I found myself struggling to write on this blog. I'm not sure why. I love writing, I feel it's therapeutic for me. It's a way to get the mess of jumbled thoughts in my head out in a clear coherent manner. I'm currently in Fort Lauderdale, Florida after a fabulous 5.5 week holiday of the East Coast with my other half. After a short flight to Sydney, I stayed there for a night then flew 13 hours from Sydney to LAX. From LAX I flew another 4 hours to Chicago and met my wonderful, amazing, beautiful boyfriend who I hadn't seen in 5 months. I felt so happy and extremely exhausted by the time I saw him. Not gonna lie, there were tears. The long distance was worth it.

We spent a couple of days in Chicago then flew to New York and got lost amongst the high rise buildings. One crazy night was spent drinking Guinness and way too much beer at a German Oktoberfest style bar. From New York we picked up a campervan and travelled up to Boston, then all the way to Florida.

It's been fantastic and very tiring. The thing I don't enjoy about travelling is the stress of it all, I find it really gets to me and my sugars. Before I left NZ I was waking up with blood sugars of 11-13mmol/l. I tried to correct but I didn't want to get too crazy with upping my lantus or putting in a novorapid dose that would send my plunging into hypo level obscurity. Instead, I waited it out and injected correction doses with most meals.

In a surprising wonderful fashion my levels have been better than when I left NZ. I'm not finding anywhere near as many double digits as before. I'm looking forward to my next A1c, which I'm due for in about 2 - 3 weeks. Before I left it was 72 (or 8.7 % ) so I am really hoping it's down at least half a percent. I think the reason for my lower levels has been the increased activity, even the general walking around from sightseeing. I actually even went for a couple of runs! Exciting. Though, anyone who has been through NZ Customs will know I'm not looking forward to going through with my trail shoes. I'm planning on sorting out some sort of exercise regime when I get back to NZ and following through with it.

My levels seem to be a constant struggle for me but I'm happy because they're heading in the right direction.

The thing about Diabetes is that it is always there in the back of my head. 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. Stay tuned.

14 Days of Healthy Eating

I've decided I'm going to do a healthy eating bonanza for 14 days starting the 4th of February. 

I like to think I eat a pretty healthy diet and my recent cholesterol levels indicate that. But I've never been strict on myself for it. So I decided that I would try something new, a focused 14 day healthy eating plan. SHONELLE STYLE!

I forsee a balance of strictness and going with the flow. Anyone that knows me personally knows I can be a bit of dreamer/loose unit sometimes. I've posted before about my inability to committ to something so I've decided to start small and do it my own way. I also believe in keeping realistic and measurable goals. Does my 14 day eating plan mean I can't eat takeaways or drink fizzy drink? Heck no. What I am going to focus on is including more vegetables, protein, healthy fats, whole grains and low GI foods. The strict part about my 14 day healthy eating bonanza is the documentation and preparation. Anyone who has done a diet record before know they are about as much fun as standing in a never ending super market queue. I'm determined to have 14 days of diet records out of this 2 week bonanza. There's always a heap of documentation for my diet records. They include the food I've eaten, the carb counts for said food, my insulin to carb doses, my insulin correction rates doses and the exercise I've done. Oh and blood sugar levels.

The preparation side of my 14 day bonanza is a focus on preparing lunches and snacks so I don't get caught in the trap of purchasing food from near my work. I'm going to spend the rest of today and Sunday researching food recipes, shopping for food and preparing it so I can have two weeks filled with tasty snacks and lunches. So food wise, I'm going to focus on healthier options but not to a point where it's unrealistic for me. So for me, the strictness of a 14 day healthy eating bonanza is not about the food I'm eating but making sure I'm documenting it and preparing it in advance.

I'm also going to prepare an exercise plan but I'm going to start small. I do a fair amount of light exercise a week as I usually walk to and from work every day (about 50 mins a day). So I'm going to focus on getting some cardio and resistance training in.And then I'll finish my 14 day bonanza by doing a 12km walk over in Central Otago. 

What's going to keep me going?

In reality I have just one goal out of all of this. Dropping my HbA1c at the end of the month. It's currently sitting at 77 (9.2) at the moment. I am going to do this.

Other things that keep me going are:

- Knowing I have two hospital appointments at the end of the month. One with my dietician and the other with my Certified Nurse Educator. To make the most out of them I'm going to need records to show them!

- I'm going to do a 12km walk in Central Otago, originally I was going to train and run it but it soon became one of those things I had an inability to commit to.

- The prepration side of this will help me to save money, which is especially important as I'm saving money to go on a trip to the States at the end of April.

- I'm going to tell 2 of the people closest to me about this who I hope will motivate me. My amazing best friend and my amazing boyfriend.

- I'm going to blog about it. I know my blog doesn't have the biggest reader ship but I do know that the view count does rise! Knowing there are others out there reading this makes me feel good and motivates me to keep going :)

- Because I'm doing this for the right reasons, not as a quick fix weight loss plan (though that would be nice!) but as way to focus on healthy eating, exercise, emotions as attitudes. My previous post showed a glimpse of some emotional struggling, I want to use healthy eating as a way to feel good in my body and soul.

I'm pretty excited about all of this.

Please feel free to comment on advice, recipe ideas (especially lunch ones!) and anything else motivating, happy and optimistic.

Shonelle xx