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Monday, 18 July 2016

Both Feet on the Ground

This year Diabetes Australia focused on the 4,400 diabetes-related amputations per year, 85% of which are preventable. The campaign was received with mixed results, most likely because it did address an issue that people don't like to think of in relation to themselves or their clients.

I don't think I'm alone in wanting to ignore the more serious side to diabetes - the side where you may develop complications despite your best efforts to train your diabetes to sit and stay on command. I will readily admit that when I first saw that the key messaging was regarding amputations, my instinct to protect my vulnerable diabetes psyche was to ignore diabetes social media for the week. Which I somewhat did. I didn't want those images. Fear of complications is very real, among all people with diabetes, and each person deals with those fears differently. I deal with my fear by trying to maintain good blood glucose control and follow the annual cycle of care to prevent complications.

The problem is, I have to think about complications more than I feel comfortable with, because I follow the annual cycle of care. The current medical system in Australia favors those in the know about their health, and for those with little time or education on how to access various services, it is easy for them to get left behind in their diabetes management and complication prevention. The current onus when it comes to preventative care and measures is on the patient. The patient has to ask to see the podiatrist, they have to remember to see the optometrist, the patients schedules an appointment with the nurse for an updated chronic disease care plan. I don't always remember to include the podiatrist in my ever-rotating list of doctors and I rely on my yearly drivers medical as a reminder to see the optometrist, as just two examples. That's a lot of work that I have to do. A lot of appointments that might fall through the cracks. And a lot of know-how to get the system to work for me.

So I for one am welcoming this years National Diabetes Week messaging around preventable amputations. The campaign worked both to educate health professionals to pursue the annual cycle of care, including regular podiatry checks, and also to educate patients on understanding what sort of checks they should be getting, and when to seek help so that they don't end up with an unnecessary amputation. The messaging this year is as much about starting these conversations with your health professionals so that they can help you to tick off all the boxes relating to complications screening as it is asking you to be aware of your own body. In doing this, it alleviates some of the burdens for me, as a patient.

I have worked so closely with my GP and the practice nurse in regards to my diabetes-related care that they are starting to look through my records without prompting. At appointments they ask to make sure all my checks are up to date - and if they aren't, they then look for someone suitable and schedule an appointment for me so all I have to do is show up and everything else gets looked into. But this was a process, for both of us. I used to have to be the one to follow up and ask, and keep tabs on my out-of-date check ups.

Some of the complaints listed against the amputations campaign this year were in regards to diabetes-related distress linked to fear of amputations and other complications. People are generally afraid of the unknown and amputations and our future with diabetes is often unknown. So what if we try to make the future known? What if we provide patients and doctors alike with the knowledge of what to do in the early stages of the disease, or the early stages of an infection, on what to do to prevent this from ever happening. How much less distressed will people be, knowing that there are things they can do, and do now, to prevent the majority of amputations.

There were complaints that the messaging this year wasn't 'positive enough' and that National Diabetes week should only consistent of 'Girl-Power' style awareness where we show the public that we all have 'D-Power'. I think we're already doing this well enough though. For every diabetic who has ever pushed through a day high, low, yoyoing between both and tired AF, they're showing that we have the D-Power. We've got sportsmen and sportswomen, TV presenters, singers, a prime minister and just everyday people who all show that we with diabetes, we can do anything that we set our mind to. I don't worry about the public perception in regards to this but public perception does need to change where complications are concerned. It's no wonder we get stupid remarks, if we are too afraid to address the issue ourselves.

Why don't we turn a negative complication into a positive message? That won't hurt anyone. Not raising awareness about the risk of amputations and what can be done to prevent them for people who live with diabetes, and their health professionals - that will hurt someone. They might even lose a leg over it.

Friday, 15 July 2016

Pulp Fiction

I added an item to our staff meeting agenda at work the other day, and it had absolutely nothing to do with my job. It was a bit of a selfish agenda item.

At the end of the meeting, when all the staff attending by conference call had logged off, I called attention to my diabetes. Everyone at work knows I have it, my diabetes is not something that I hide. Some understand my diabetes fairly well, some the basics and some I am still working on educating.

I fielded an errant comment only a week ago during a staff birthday morning tea that I wouldn't be able to eat cake next week (now this week) because it would be National Diabetes Week. I am not sure how it being National Diabetes Week prevents me from putting cake in my mouth, but I'm beginning to think the commenter was on to something, because I am super high right now from the cake I did eat today at morning tea. We have lots of cake here. And I have a lot of salads that I don't want for dinner as a result.

Hands Free Hypo.
Conversations continued later that day when I was walking around with a juice box tucked under my chin treating a hypo. I don't usually allow people to see me treating a hypo because I tend to get cranky and I just want to be alone. This was one of those rare times when I allowed other people near me. Naturally, questions were directed to me about hypos, how to treat them, and then if they should/could do anything and if so, when. I went through the usual explanation and ended with instructions that if myself or the other diabetic at work were unconscious, that we should be given Glucagon, and how to give it.

"Like in Pulp Fiction?" someone said, and mimed stabbing a needle into their chest.

Almost, but with a little less 'aggressively stabbing needle to the heart' and more careful insertion into a large muscle

The next day I added a Glucagon demonstration to the staff meeting agenda, which is how, in the middle of National Diabetes Week, I came to be holding a diabetes special of 'Show and Tell' at our staff meeting. Complete with demonstration from a dead (expired) kit I had been hoarding at home.

Reasons Why I'm Hypo: I rage bolused to get rid of the stubborn post-cake high. Rage bolused kicked in hard.

Thursday, 7 July 2016

NDS-What? (Part Two)

My pump site was due for a change on Monday morning. I went about gathering the necessary items for my set change: Canula set, reservoir, alcohol swab, insulin. Except when I scavenged for insulin in my fridge I found a single vial rolling around at the back of my fridge. Essentially I only had 6 more days of life stored. With half of that vial going into my pump during the set change, it was 3 days of life left in back-up. I obviously made getting new insulin a priority, and scheduled an appointment with my GP to get a new script (I didn't have one already). When I did another set change today, it meant that I had absolutely no insulin left as a back-up. Feeling a little bit panicked (Ok, I was more than mildly freaking out) by my lack of organisation, I headed off to my local chemist as soon as I had the script crumpled into my hand, and luckily they had some NovoRapid in stock (Usually they have to order it so I was lucky!).

While I was there, I thought I should place an order for my brand of test strips, as its not a common type and I have yet to see it stocked on shelf anywhere. I had actually been organised with this, and had made a specific trip to my chemist back when the NDSS changes were first announced. They assured me they would read up on it and prepare, and I gave them the product codes for the pump consumables and test strips I usually used.

I requested my test strips, and was told that I was the first person to have asked for a special order under these changes. I expected as much. What I didn't expect was to be told it would be 2 weeks....2 whole weeks....before they thought they could expect a delivery, as they had not yet 'figured out the system'. Luckily I am not as disorganised with test strips as I am with insulin...I have one and a half boxes of strips left, about 3 weeks worth of supplies.

The '2 weeks' statement left me a bit in shock. As far as I had been able to read, there was supposed to be a 24 to 48 hour turnaround on NDSS supplies with this new change. 2 weeks is well, well over what I consider acceptable. I was pissed off at the move from Diabetes Australia as NDSS providers to chemists as sole providers by the federal government. It's scary having to rely on small metal strips to control a disease. Its scary when you are told there's essentially a 2 week wait to get access to these things that help to control your disease. Its scary when that control is ripped from you by a government who will gladly sacrifice your health to save a buck or 2. Its scary when the issues you were worried about with the provider change, turn out to be something that you actually need to worry about instead of just being crazy what-ifs. When the worst case scenario, that you can no longer easily access the tools you need to survive, becomes your scenario.

I left, being told to call back in 2 weeks time, when they 'hoped' that the strips would be in. As I was gathering my things to leave, the pharmacist made the comment, "I've ordered you one box, that's it right?". No, not if there's a 2 week wait on supplies everytime, its not. I changed my order to several boxes, and will see how many I can get away with. No matter how this pans out, I don't trust the new system, Not with my life, So I'll continue to stock like the apocalypse is right on my doorstep, and will make sure I never put myself in a situation where I have less than 3 months supplies at any given time.

 It's just another added layer of thought I have to add my diabetes management now.