Test Strips

There’s No Such Thing As “High Use”

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I poured my heart into the column I wrote for Insulin Nation last week, which you can read here. I questioned why I am made to feel guilty for using more test strips than what is subsidised through our National Diabetes Services Scheme (NDSS) here in Australia. I knew it was a topic that I felt strongly about. What I didn’t expect, however, was the overwhelming response from other people who felt exactly the same way that I did. Individuals, parents, children and people commenting from the other side of the world.

Over on Twitter on Saturday morning, a tweet from my #OzDOC friends Kate and Melinda at Twice Diabetes caught my attention. In response to my column, they suggested to a concerned Aussie d-parent that they could apply for a “high use exemption” from the NDSS limit with a doctor’s sign off. Another d-parent joined in the chatter, telling us that she had a letter from a paediatrician outlining the necessity for “high use” testing.

Look, that’s great. I am really pleased to hear that these individuals were able to access their supplies in their time of need. But it’s not good enough. Why should these individuals have to go and justify the need for these supplies? The very supplies that are keeping them, or their children, alive and healthy. By putting people into boxes such as “high use,” we are only further demoralising them. More than likely, they will go to their doctor. They will face a string of questions and concerns over whether they are managing their diabetes well enough. They will face judgement. And more than likely, they will feel inadequate.

In my opinion, there is no such thing as “high use” where Blood Glucose Monitoring is concerned. In my opinion, regular Blood Glucose Monitoring is in everyone’s best interests. It gives me a sense of control and peace of mind over my diabetes. It keeps me safe and healthy as I carry out my daily activities such as work, exercise and leisure. The very activities that can have implications on others if not monitored adequately.

I have gone through burnouts from diabetes. I have gone through periods where I have wanted to give up, and periods where I have lost the will to monitor my blood sugar levels. And during those tough times, the last thing I need is to be encouraged to test less.

I don’t want to place all of the blame on Diabetes Australia or the NDSS. I am really grateful to live in a country where we are blessed with such a good healthcare system. I also blame the meter companies who over inflate the prices, and make a profit off of our disease. But that’s another blog post altogether.

Personal thanks to Craig at Insulin Nation for your support of this story all the way from the US, and for pushing it to Diabetes Australia and the NDSS on social media outside of your work hours. I was also extremely pleased to see that I had a small victory. The NDSS agreed that this quote on their website did indeed make individuals like myself feel guilty:

“There are limits to the number of products you can purchase on the NDSS. If you reach the limit, we will contact you to give you information to help you manage your diabetes.”

The NDSS updated their website on Friday as a result of my column. The limits to diabetes supplies accessible through the NDSS are now clearly specified (they previously weren’t), and there is a much nicer wording for those who require supplies beyond the limit subsidised:

“We understand that some people may require more products to manage their diabetes. If you require further assistance with accessing products to manage your diabetes, please contact the NDSS on 1300 136 588 or at ndss@diabetsaustralia.com.au.”

Thanks to Diabetes Australia and the NDSS for reading the article and taking my opinion on board. I do feel really proud to stand up for all Australians living with diabetes and to walk away with a small victory.

However, we still have a long way to go.

Someone Else With Diabetes Was Here!

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It was our last morning in Canberra. I was pretty much all packed up and ready to go. With a bit of time left on my hands to kill, I decided to do all of those crazy checks of the room. I zipped up and re-opened my hand luggage, pulled the sheets off the bed, opened and closed each drawer on my bedside table. I knew there was absolutely nothing left in the room, but in one final moment of craziness, I decided to pull the bed away from the wall. And this is what I found.

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It was a ketone strip. And ironically, it even belonged to the very same blood glucose meter that I use.

It’s hard not to feel alone when dealing with diabetes, sometimes. And that’s not necessarily a bad thing. I like being independent. I test on my own. I inject on my own. I correct on my own. I fix hypos on my own. I get angry and frustrated on my own. I get all excited on my own. And I deal with all those crazy thoughts and feelings that go rushing through my head on my own. Okay, maybe I’m a little too independent.

I do my best to talk about diabetes to others, where I can. Last week, I was pretty proud of the fact that I decided to share the eye issues I was having with some of my friends at work. I’m also pretty proud to share with my family the progress that I’m making with this blog and all of the amazing support that’s come from it. But I still struggle to explain to others all of the things I have to do to manage my diabetes. And it’s still a struggle for others to understand that there is a difference between type 1 and type 2.

Outside of this blog and the wonderful diabetes online community, I don’t really know many people with diabetes. And this had to be the closest that I had ever come to someone else with diabetes. I saw that test strip and I was ecstatic. I shouted for the others to come in and see what I had found. I grabbed my camera and began taking photos. I even resisted the urge to post the photo up on Twitter.

Someone else with diabetes was here. Someone else, like me, had to drag type 1 diabetes along with them on their travels. Someone else, like me, had to sacrifice precious holiday time to deal with diabetes. Someone else, like me, had a frustrating time as they did their best to get rid of those ketones. And maybe, like me, they got so frustrated that they flung all of their used test strips on the floor.

In that moment, I was reminded that type 1 diabetes does exist in the real world, too. And in that moment, I felt just a little bit less alone with my diabetes.

Access to Supplies Isn’t a Question, It’s a Right

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My Blood Glucose Meter is one of the most important things in my life. Its one of the first things that I see on my bedside table when I wake up in the morning. I’ll zip it up securely in its little black case and tuck it safely in my satchel, where it will accompany me on my daily commute. I’ll open my satchel again before I start the car, just to make sure that its there. When I get to work, I’ll place it carefully on the shelf in my locker. It patiently sits there for much of the day, ready to be at my service as much or as little as I need it. Before morning tea. Before lunch. As a post-lunchtime reassurance. If I start to sweat or shake uncontrollably. At the end of the day, I’ll tuck it safely back into my satchel, before it finds its familiar place back on my bedside table at home.

When I’m dealing with a disease that is unpredictable and ever-changing, numbers are always on my mind. They plague me throughout the day. They plague me when eat. They even plague me when I stir in the middle of the night. I’m constantly questioning myself. Thinking to myself. Doubting myself. ‘I wonder what my blood sugar level is right now? Did I give myself enough insulin at lunchtime? How much will I drop in the next hour? Am I feeling hypo? No, it must just be this afternoon’s task that’s exhausting me. Wait, maybe I am hypo? No, no way. Well, maybe…’

Last week alone I had 58 moments of uncertainty. Last fortnight there were 125. And in the last month there were 257 of them. And I have this one little device that has the power to sweep my mind clean of all the thought processes scattered there. To dismiss all of my concerns and rid me of my fears. To keep me grounded. To keep me sane. One little prick produces a number and I’m empowered again. I feel secure. I’m back in control. I know how to react.

I consider myself pretty lucky here in Oz to have unlimited access to blood glucose meter test strips, needles and other non-medication products that I use on a daily basis to manage my diabetes. Since registering with the National Diabetes Services Scheme (NDSS) upon diagnosis, I have been able to get my diabetes stuff at a heavily subsidised cost, without a doctor’s prescription, whenever I like. As little or as much as I feel I need it in order to manage my condition.

So, I’m pretty devastated to hear that some Aussies with type 2 diabetes are about to have that freedom taken away from them. If their diabetes is not treated with insulin, it will be up to their doctor to decide whether they will benefit from blood glucose monitoring after an initial 6 month supply of test strips.

Yes, a type 2 would not use blood glucose monitoring as much as a type 1. But I’ve no doubt that they would go through those exact same feelings and thought processes. I’ve no doubt that at some point during the day, the week or the month, a type 2 would need to rely on the security of a blood glucose test. If they’ve eaten something different at dinner. If they’ve done more exercise than normal. If they’re not feeling well. Diabetes causes A LOT of uncertainty.

Its like being handed a box of test strips and being told “you have 6 months to get your diabetes under control.” And then in 6 months your blood glucose meter is taken away and you’re told “you now have to keep your blood sugar levels between 4 and 8 all the time.”

Diabetes is not something that we can always “get” under control in 6 months, let alone maintain all the time. Our lifestyles are ever changing – work, travel, diet, families, physical activity – all of which have significant impacts on our diabetes. Doctors aren’t by our side 24 hours a day to see, let alone understand, what we’re going through. The only person who knows you best, is you.

We are blessed to have all of these fantastic tools available today to help us manage our diabetes. For many, a blood glucose meter gives us a sense of security and control. It should never be a question of who gets them. I only wish the people making these decisions would understand.

Source: The inspiration for this story came from Renza at the Diabetogenic blog. There are more details about this decision process over on her blog.