Being diagnosed with a chronic illness sucks. You go through a flurry of emotions because you can even begin to accept it. From anger to bitterness to nervous giggles and cringe-worthy jokes, few emotions and coping mechanisms will be spared as you deal with this road block. And that’s exactly what I see diabetes as – just a road block followed by detours, even if it feels like you’re falling off the edge of the highest cliff in the world.
I probably have ranted on this topic enough for it to be common knowledge that my diagnosis has always been a confusing one. I don’t have the typical characteristics of a type 2 diabetic but neither do I fit neatly into a type 1 category. The decision to progress me onto insulin was a fairly easy one, considering that the oral tablets typically prescribed to those with type 2 did little for me. It was only after opting to go for multiple daily injections with the basal bolus regime that my HbA1c took a drastic dive and has been sitting between the 5-6% range ever since.
What I haven’t realised before discovering the Diabetes Online Community and talking to other diabetics is that my eating flexibility and freedom has been somewhat of an illusion. My previous diabetes healthcare team told me how much insulin to take with each meal and away I go with it. I typically only eat three meals a day and was anxious to eat between meals because I wasn’t given doses to cover the extra food I was eating. It was rare that I would have a carbohydrate (CHO) loaded snack in between meals anyway, but if I did, I struggled to calculate how much insulin I needed to cover it. More often than not it would be too much work for me to do all the calculations from scratch and I’d just give up. Maths was never my strong point.
It didn’t take me very long to find out about Oz DAFNE (Dose Adjustment for Normal Eating). Maybe now I will finally learn how to count my CHOs properly. So rather than eating to my insulin doses, I can adjust my insulin doses to my meals! How amazing would that be?! I was very excited. Until I was told that the course was only offered to people living with type 1 diabetes and of course at the time my diagnosis was a solid type 2. Why are there so many restrictions within the diabetes community for people living with type 2 diabetes? I could go on about the discrimination that goes on between people living type 1 and type 2 diabetes but that’s a rant for another time. Needless to say, I was shattered and felt very disappointed by the system. Instead, my dietitian gave me a formula to help me count CHOs. Have I mentioned that Maths was never my strong point? Well, there goes that alternative.
However, all this changed when I decided to see a private endocrinologist. My endo understood my quest to be lumped in with type 1 family because of all the restrictions I had been facing. For the moment, it is believed that I may have type 1B diabetes – a non-autoimmune form of insulin deficiency that is common among individuals of Asian descent. Because there’s no autoimmunity associated with it, there will never be any antibodies found. Despite that, it was made very clear in all our appointments that my diagnosis could still fluctuate if new research and diagnostic tools came out in the future. At my last appointment, we talked about going on the pump andmy endo commented that it could possibly be overkill considering how my control is excellent. I agreed but persisted with the fact that when I am looking to start a family I would definitely want to be on the pump, no second thoughts. I was also hesitant due to the thought of having something attached to me 24-7. I’ll just have to learn to be more graceful and less clumsy. (Yea right, like that’s going to ever happen).
The best thing about my new endo was that my view was respected, taken aboard and fully agreed with. I had been so used to dealing with rebuttals from healthcare professionals that I was thrown aback when it wasn’t dished out this time. Instead I had my endo’s full support. In fact, I was told that even if my diagnosis changed back to type 2, my endo would do everything to help me get the pump with subsidised consumables. At this point I’m pretty sure I pinched myself, thinking that I’m dreaming.
Following from that, my next step would be to learn to carb count properly. Since I am now able to access these programs, I have just booked into the DAFNE course. In the meantime, I’m also hoping to get my hands on either the InsuLinx or the Aviva Expert, which are blood glucose meters that helps calculate insulin doses to the CHOs you are eating. It’s basically like a pump but for multiple daily injections. Baby steps for me, but at least I feel like I’m progressing towards better diabetes management!