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.

King meets King

If you've read a few of my recent posts you will know that CGM funding, and especially the extension to adults, is obviously something I am quite passionate about. As far as I am concerned, just because I can no longer walk around in frilly pink dresses without getting sidelong glances, doesn't mean that I don't deserve the same equal access to healthcare as the cute 5 year old with pig-tails.

I was very excited to be given the chance to talk with Shadow Health Minister Catherine King and ALP Candidate for my electorate of Bonner, Laura Fraser Hardy, about the recent CGM funding announcement.

Along with 2 families with Type 1 Children, we were given the opportunity to chat about what the election funding commitment could mean for us, and the positive impact that new technology can have on our lives.

Before I met them, I was quite nervous to be talking to Catherine and Laura. I felt like there was a lot of pressure (that I put on myself) to make sure that they really knew what it meant to be having this conversation about CGM. What is an election pledge for them, is potentially someone with Type 1 Diabetes' life. Potentially my life.

I don't know what I was worried about. Catherine and Laura were very involved in the conversation and I felt that they were really trying to understand what it means to live with Type 1 Diabetes. They were both friendly, attentive and inquisitive about not just CGM, but about pumps, injections, blood glucose testing and diabetes in general. I use CGM full-time, so I was able to pull King out for a bit of show and tell, including letting Catherine & Laura see the pros of CGM with a 'Suspend Before Low' (that I never had to treat for) captured on my graph before lunch (bonus points to me, I was having a nice smooth day with a graph of 7 and below for the previous 15 or so hours).

Introducing King to Laura & Catherine

I got to do what I wanted and had a conversation with Catherine about the inclusion of funding for adults. Obviously I would still like to see the funding extended to adults with no requirements, as with the funding for children. This is a problem across the board for diabetes technology though, including insulin pumps, where adults have to jump through hoops to be funded, but children don't (Yes, I did make these comments too). There's always room for growth, but at least that initial proposal is including adults, which opens up a door for further expansion on the programs. I don't doubt that Diabetes Australia and JDRF will continue advocating for access for everyone.

To read more about the ALP's committment to CGM funding, you can read diabetes Australia's statement here.

Relief

News came from the ALP on Wednesday, that they had jumped aboard the CGM train, announcing an election pledge of $84 million to improve access to diabetes technology, predominantly a CGM subsidy as well as extra funding for the insulin pump access scheme currently in place.

This was initially relief for my conscience, because I was no longer having to vote against technology that I stand behind as having such a positive impact on my life. I did worry that voting against CGM would make it seem like it was not a needed technology, when I feel strongly that it is needed. 

The announcement was more than just good for my political agenda though. The announcement by ALP included not only children up to 21 years old, but adults over 21 who had severe hypoglycemia or hypo unawareness, as well as pregnant women. 

As far as I have inquired so far, the submissions that were made by Diabetes Australia, JDRF and other relevant groups including ADEA were to include all people with type one diabetes, and never limited their recommendations to children only. To see this recommendation for all Australians living with Type 1 Diabetes being acknowledged makes me happier than I can put into words. After all, my diabetes has never decided to toe the line and model itself as an A-Grade student just because I happen to be above the legal drinking age and know how to do my own taxes.

Everyone should have access to life-saving technology. Adults who have severe hypos and hypo unawareness may live by themselves. I have night-time hypo unawareness, where I do not wake up at all to nypos, and the only way I can see that I have even had one is because I can look at my CGM trace the next day and see where my pump has kicked into action to suspend my blood glucose. With my 640G, it even does one better and suspends before low so I never even reach that low level. At home with my husband, I have someone who can help me, but when I go away for work (which is several times a year) I rely heavily on my CGM. 

So today I am very relieved, that we as adults have had a victory too.

Sugar Scars

I flicked onto to ABC3 (yep, a kids channel) the other night to watch a re-run of the season final of Tomorrow When the War Began. I grumbled at the T.V. as the plot deviated further from my beloved books (which I definitely have to read again). I don't like it when things are different from what I know.

'Tomorrow' is one of those series I can read again and again, and imagine differently every time. I loved the movie and 6 years on I'm still more than mildly pissed off that they never made the sequels.  So the TV series starts off, and its so different to the books. Fi couldn't be less of a pretty proper lady and more of a tomboy if she tried. No. And what is with that Robin liking Lee crap? Just Nooooooooooo. The random invading army who seem to be asian/australian/kiwi/I think I saw a few Indians. Where are they even from? All of it is no. Sadly though, this fail of a TV series may be the only way I will see the series completed.

I digress.

I think the point I was going to make before I went off on my ranting tangent was that I really love the survivalist idea behind 'Tomorrow'. How ordinary people would react to situations where all their comforts are taken away and everything in their life is all about survival.

I'm not sure if these sorts of books make everyone else think of how they would react in a similar situation, or if its just me. What I would do to survive, How I'd get food, find shelter, join with other humans, what sort of things I'd scavenge. Which neighbourhood I'd move into and which mansion I would booby trap. How to manage a chronic illness when medical supplies are limited and have ceased to be manufactured.

On one of the Facebook groups for Diabetes, one of the D-mums put up a post on a book she had been given. Sugar Scars by Travis Norwood follows a young woman with T1D in a post-apocalyptic world where a virus kills most of the population (only 1 in 9600 people survive). I'm going to somewhat review it now because I took the time to find it on Amazon, download it to my kindle and read it, so if you don't want to read some extremely vague spoilers that just give you the gist of things, stop reading now.



The book very much centers on the main characters struggles to survive with Type 1 Diabetes. There's not much plot besides her diabetes. It's not a bad thing. Certainly, I think the author, if he didn't have or know someone with T1D, must have done a boat load of research on Type 1 Diabetes.

The plot revolves around the main character, Sugar (we never find out her real name), as she collects insulin, and meets other people around her town in Tallahassee. Sugar finds the insulin around her town, sleeps with someone who can hook her up with electricity so she can run a fridge to keep her insulin cool, and goes about her merry life, essentially retired at 19 years old. (She does not have to forage for food because there are so much supplies available). At some point, it gets pointed out to Sugar from her sugar/electricity-daddy  that her insulin actually expires. It was probably at this point in the book that I started doubting that the author actually had diabetes himself. There is no way that you can be reliant on insulin to live and not know that it expires. We have ALL had that talk from our diabetes doctors about extreme highs caused by cloudy insulin, changing temperatures and the forgotten vials at the back of the fridge. Its just not possible for you to not know that insulin has an expiry date. It's stamped on the damn box and on every vial.

So Sugar learns the shocking truth that she too will expire if she doesn't manage to get some new insulin batches. She goes off on an epic journey to make insulin the old-fashioned way, looking up textbooks, cutting pigs open, getting her chemistry kit out to play with. Along the way she meets a vet who really likes to vet/misses his day-job and has turned into an animal-saving recluse. Somehow or other, I forget how, he ends up getting injured and Sugar has to stitch him up. The stitching up of human flesh is all going swimmingly, until he instructs her to sew through the subcutaneous layer, to which she responds (Wait for it....wait for it....) that she has no idea with a subcutaneous layer is. The only response I had to this was to slam the book shut and whine at one of the poor Diabetes Australia staff who happened to be nearby (I work very close by to Diabetes QLD...lucky for me, unlucky for them). I'm not sure where Sugar was taught to inject if not her subcutaneous layer.

I won't spoil the whole book, because it is worth a read if you are considering destroying the world and need to know how to make your own insulin (there are even some interesting side-plots). Its kind of refreshing to see a plot that isn't about killing zombies (but I do love Zombies) or warring against other humans, but is about surviving a chronic illness, plain and simple. A book relevant to my feelings about Diabetes in real-life, because I've had 'Get New Insulin' written in my diary for a month now and I'm down to my second last vial and I'm starting to wonder if I'll let myself die before I remember to get a new script and stop by the chemist. That fear is real.

Blog Week Day 5: Tips & Tricks

Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

I have to apologise for the lack of blog yesterday. I wasn't feeling it, and I don't like to force myself to write if I really cannot get into it. So there will be a double upload today. You can check out yesterdays blog, uploaded today here.

So without further ado: Tips & Tricks Time!

Diabetes Supply Overflow

A few weeks ago, I uploaded the meme I had created on leaving the house before and after diabetes, which was inspired by the fact that I have to take a mini-pharmacy everywhere with me. I have been trying lately to take some of the weight off my shoulders and try to use a small(er) handbag. I can leave the house now with a juice or pee-jar full of jellybeans, meter, strips, lancing device & pen. Of course it does depend on how far I'm going, ability to quickly procure more supplies & hypo treatment if needed, and how long I will be gone. Using CGM full-times means that sometimes I can even leave without meter, strips & lancing device. The hypo treatment & quick-acting insulin pen & 2 to 3 pen tips are the most important things I might need when out. I frequently run out of insulin throughout the day (I'm not good at looking ahead for my insulin needs). If I run out completely and there's nothing at all in my reservoir, I use the pen to inject insulin into the reservoir. No need to take a reservoir connector. If I am mostly out but have enough for basal but no boluses, I inject the boluses - but do it straight into my canula so I don't have to feel the needle. If you look at where the hypodermic needle goes through a canula (Medtronic Mios are particularly good for this) to insert it into your body, once you remove this needl there is still a small pin-prick sized hole that you can inject into to avoid having to stick an actual needle in your skin. Yes, I hate needles this much.

MINE (food)

I have a co-worker who likes to eat my jellybeans. I have begun to counter this in 2 different ways. Firstly I keep my jellybeans in a urine sample jar (those things are sterile) because no one wants to touch that. I have also recently begun stocking some Bertie Botts every flavor beans. They legitimately mean every flavor. There is a vomit flavour, one, and yeah it tastes as stated. I can't stomach them. So I put them on the top of my larger jar of jellybeans, with all the acceptable flavours way way down the bottom. My jellybean jar has remained untouched by anyone but me of late.

Girly BGL patterns

How many other people get warned against using parts of your body that aren't your stomach as canula sites? I'm sure my educator sighs internally when I tell her about the newest part of my body that I have decided to try with my canulas. Something about different absorbency rates. I've made that work for me. Previously I have given TMI when it comes to how badly my menstrual cycle fucks things up in the land of good glycaemic control. But no more! I have now worked out when my BGL is running higher, lower and holding steady over my menstrual cycle, and I plan my set insertion sites around this. During the few days when I am running higher, I place a Sure-T set in my leg, because the constant movement and more muscle gives me better sensitivity, helping to lower my BGLs. When I am running low, I place Mio sets in my hips, where I have the most fat and seem to have the worst sensitivity, to raise my BGLs. All that fat. Doesn't really move much. And when I'm pretty even I place Mio sets in my back and arms. I never use my stomach - that is CGM only territory, so is constantly in use by sensors. 

I'm sure I have many more tips, but nothing that my exhausted brain can remember, which brings Diabetes Blog Week to an end.

You can read the final responses at this link here.

Once again, Thank you to Karen at BitterSweet for hosting a week full of fun, creativity, personal reflections and no sleep.

I am looking forward to a weekend of blog catch-ups where I can finish reading the blogs (I think I got through roughly a quarter of all posts during my exceptionally busy week), and clicking the sign-up buttons on a bunch of them so I can continue to follow them. I also want to try to get into a few more of the online support platforms if I have time (I can find the DOC overwhelming in the sheer volume of support sometimes) and might even give that twitter thing a go (I think I have one, lying completely dormant somewhere).

Diabetes Blog Week Day 4: The Healthcare Experiance

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Excuse my tardiness. I started this last night, but got very, very tired and felt quite unmotivated. Today is a better day for motivation. 

In my perfect world, Healthcare would be more unified. At the moment, trying to access a range of services is a very disjointed, costly and timely practice. As a Type 1 Diabetic, my healthcare team should consist of:
 - A GP
 - Endocrinologist
 - Diabetes Educator
- Podiatrist (I had to ask my husband:"What are those foot people called again?" because I never see these guys)
- Optometrist
 - Mental Health team
- Dentist
- Pathologist
- Probably a bunch of other HCPs that I don't even know exist

Each of these different HCPs and medicine areas need different types of referrals, and usually require you to prompt your GP to be given information about them. A lot of the time, unless I know about and ask for the service that I am wanting, it's never mentioned to me. I've only seen the podiatrist once, because I had one service left-over on my care plan and the care plan nurse just allocated it to the podiatrist. I haven't seen a dentist for a little while because nobody is prompting me too, and that's just another thing to remember about my health. I do get a reminder to see an optometrist so I can get my licence every year, and I make my endo & educator appointments reoccurring appointments (Yeah, you can do that. Medical software has a cool 'Make reoccurring appointment' button that you can ask the receptionist to click).

With a disease like diabetes, trying to balance all of these appointments is hard enough, let alone doing the leg-work on each to find good doctors (or any nearby doctor at all), get a referral and make an appointment for each. Where you are regularly checked for each of these health points, and from this given access to doctors who will meet your health needs. My experience is that most HCPs don't know who to even send you to when you do ask, and they expect to be told a name to write on the referral. I was lucky that I already knew my endo before I was diagnosed, and that my endo passed me on to the worlds best diabetes educator. I did ask my GP for a mental health care plan once to talk about some mental health issues I was having related to my diabetes. I didn't know the name of anyone particularly good in that field, and was given a referral to the first name alphabetically on my GP's list of mental health professionals. The person that I did end up seeing thought that hypos were hilarious and said she liked watching people have them. As a side note, my fear of hypoglycaemia and subsequent high BGLs was why I was seeing her......She was not a winner in the health professional field.

So I guess ideal access for me would follow a path of:

1. See GP.
2. GP refers on to clinic nurse for full assessment of multidisciplinary health needs.
3. Nurse does up plan covering each aspect of your health (eyes, feet, teeth, mental health, educator, endo) and is able to give you suggestions on who meets your needs in each area. (This would rely on a better, shared health service where GPs can access notes about services in their areas used by all health professionals. The current model is very segregated where GPs must build up their own database of names, and sometimes they do not have any listed. I'm not asking for a program where Drs rate each other, bur rather an accessible database where basic details of any services (ie. area of interest, price, waiting list, what they are used for/do, etc) in the area can be logged by anyone coming across a new service. I do something similar to this in my job for a particular disease and patients are always very grateful that they can be told about multiple services near them in one conversation.
4. Referrals are given and arranged for all at the one time. This can also include support services such as health organisations (Such as DQ) or even support groups for particular illnesses in the area, rehabilitation programs, etc.

For patients who struggle to know which doctors they need to see and what support is available to them this could be a lifeline. As I mentioned previously, I run a support group, and my educator now gives out my contact details to any patient that she thinks would benefit from peer support. I am happy to work with her on this because it is one less thing for patients to worry about, and really creates a holistic approach to healthcare.


For other brilliant posts on this topic, please see here

Diabetes Blog Week Day 3: Wild Card - My Day in Food

Some people track every bite they eat, some might not remember at lunch time what they had for breakfast or if they even had breakfast. For one day, document everything you or your loved one with diabetes eats and drinks. The good, the bad, the ugly, the proud, the ashamed, the...whatever. We promise not to judge!!

I am intrigued by this topic. I am an advocate of the notion that being fed is better than not being fed, and so therefore encourage no judgement on any food consumed. The topic, even though it is judgement -free, is still asking me to evaluate what I put in my mouth and when.

So it is with trepidation that I start about evaluating my food choices for the day.

BREAKFAST:
 A bowl of cereal, not measured, eaten hurriedly at my desk at work. I eat Special-K because my husband tells me it has an acceptable protein level. I don't really care about that, but he does, so I continue to eat my cardboard tasting cereal. I don't know what happened today, but my BGL afterwards was 16, when normally for the exact same meal every morning my BG is at 6 - 7. I guess diabetes just wanted to remind me that its still hanging around.

MORNING TEA:
BGL back to normal! I had a meeting at 10am, so made a hot chocolate and had a half an oaty slice muesli bar to tide me over until lunch.

LUNCH:
I was *swear word-ing* lazy this morning when I got up, and skipped the making lunch part of getting ready. There's not too much open for lunch right near my work, so I went to Maccas to have a banana bread. Banana bread is basically my thing. I would sell my kidney for a good slice of banana bread, and Maccas do some of the best, even though I refuse to eat anything else off their menu.

AFTERNOON
Its the afternoon, so I was dropping. I had the last half of my muesli bar and some crackers that I found in my snack drawer at work. It did the trick and I was able to drive home without having to down an over-heated popper. Score.

DINNER
Still bloody tired, so I napped when I got home and didn't plan dinner. The result was a Grill'd burger and some sweet potato fries.


Typing this list shows me that I still hate seeing what I have eaten. From morning tea onwards I can only tell myself that I am a horrible human being when it comes to food. At least tomorrow I have a later start and will have time to make a salad sandwich for lunch.

For more blog posts on this topic, click here.

Diabetes Blog Week Day 2: The Other Half of Diabetes

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I'm taking a break from reading yesterdays blogs to type this. Because Australia is often the first country to participate each day, I find that the best catch-up time for me is the next day, when the rest of the world has woken up to share their thoughts. 

I think the best way to answer this topic is with a question of my own. How doesn't diabetes affect me mentally and emotionally? The emotional side is the part of diabetes that I struggle with the most. I don't like needles, set changes, finger-pricks, blood, insulin, hypos, hypers and all the rest that comes along with diabetes. But all those aspects are much easier dealt with when I take away the mental and emotional side of diabetes. They're all just actions really. It's when I start to think of how each action I take, each number I see, each set I change, each change to my bolus or basal insulin affects me that diabetes really begins to...affect me.

I have developed a way of coping that I am not sure is really conducive to my health, but it gets me through each high and low reading, so I'll share it anyway. I tell myself that tomorrow I get to start fresh. Its probably a little bit of denial about the bad things that happened to my diabetes, but if I forgive myself for the things that didn't go right, I can start the next day wanting to try. If that doesn't work, a good old cry in the shower or rant about nothing usually does the trick. You just have to get through now to get to the next moment when you can feel good about yourself and happy again.

In an odd twist, diabetes has in fact aided my mental health. Pre-diagnosis I struggled a lot with anxiety, to the point I would pass out. In forcing myself to forget the consequences of whatever I did to make my BGLs behave as they do, and telling myself it was ok to let go for now, I have had more control over my anxiety. I still get anxiety - and sometimes it is diabetes related - but I am much better at knowing how to control it and move myself on quickly. I haven't passed out once since diagnosis.

The mental aspects of diabetes will never go away, so long as diabetes keeps insisting on following me around. I have just learnt not to let them get me down for too long.

Diabetes Blog Week Day 1: Message Monday

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

I open my mouth, and opinions come out. My blog is a space where I can vent, rage, be happy, hopeful, sad, and educate; hopefully without judgement.

One of the reasons that I did start writing my blog was as a way to self-support. Support is often the message that I want to convey the most. Diabetes is a critical and hard disease to cope with, and support in dealing with diabetes can make or break a bad diabetes day.

I find that a lot of my messaging highlights how the general community can help support us, through educating them further about all types of diabetes, how language use can impact on us, and trying to correct untruths told about diabetes.

I look to give myself emotional support. Sometimes I just need somewhere to write down all my frustrations. I am one of those people that needs to get bad feelings out of my system. If I can have a rant or whinge or cry about something and lay all my feelings out, I can move on quite quickly and go back to my normal happy self. Most of the times, I completely forget who or what it was that I was even cranky about in the first place.

I look to support others living with Diabetes. Earlier today I finished tapping out my response to the CGM announcement (self-support), and made a point of the lack of support that I feel as an adult with Type 1 Diabetes. When I was first diagnosed with diabetes, I didn't have any familial support. I didn't have any support from my friendship circles. People either did not want to or did not know how to help support me through my diagnosis. My first month living as a T1D was hands-down the loneliest month of my life. I created my own support, but I never again wanted to see anyone struggle to get support like I did.

I have since created a face to face support group for young adults, and talk regularly with group members, some of whom have become close friends.

Raising awareness of issues is one way that I can help to support others with T1D.

Reading other blogs helps me feel supported.

CGM Brain Jumble

On my Facebook, in my messages, on T.V. All day yesterday I watched news cycle around about the CGM-funding announcement that came from Turnbull's office.

The announcement that, if elected, the coalition will invest $54 million in subsidies for as many as 4000 children (up to the age of 21) to receive CGM funding each year. 

I tried to write about my feelings yesterday, and found that I couldn't. I stopped, started, stopped and went for a walk to try to sort through what I wanted to say. Finally, I wrote down all the crazy jumbled feelings in a document so that I could try to sort through them. I don't know if I'd ever felt so confused about a diabetes announcement in my life. I had to reconcile with myself the conflicting feelings of happiness, sadness, anger, hope, and utter deflation. 

It wasn't until I read Bec's blog that I could even start to sort out why I had spent the day feeling so off about it all. 

I was of course, immediately happy about the announcement. CGM is an invaluable tool, and I am so happy that it was finally being recognised and may potentially be offered to kids who could really use it. And I was happy that it meant that Type 1 was being talked about for once - and even all day long! Something was actually spotlighting us. 

I was hopeful that now that the conversation had been started, that it might continue. Hopeful that one day CGM would be more financially accessible, if this much attention was being paid to it. Hopeful that all the hard work of those groups campaigning would pay off, and they would be rewarded for their efforts.

But after that happiness came the disappointed anger, that Type 1 was being shamelessly bandied about as a way to garner votes, with no set-in-stone promise to show for it. After the election there is every possibility that it may not be mentioned again given the lack of timelines and delivery mentioned, so I felt scared about how it was being used as an election tool, aimed directly at those who had made the most noise - the parents of Type 1 kids.

There was guilt. A lot of it. Knowing that I will more than likely be voting against the technology, because I care about the bulk-billing system and other agendas more. I am hoping that the Labor party will announce a similar pledge to ease my troubled mind. But as an adult with Type 1, trying to save for a home loan, I see a bulk-billed GP and rely on my blood tests to be bulk-billed so that I can afford to see my diabetes specialists. I cut money in a medical-sense where I can to ensure that I can pay for the specialist help that I need to adequately control my diabetes. It has been made very clear that the Turnbull government are still going ahead with the cuts to pathology, no matter what the papers are reporting. It would mean more personal cost to me, to vote this policy in. Its a hard thing to ask someone to do, when you give them the choice to either betray their peers or accept a significant personal cost to themselves, with no guarantee that the cost will even end up being justified. 

I feel a loss on behalf of Type 2 patients. The CGM funding, if it progresses past policy stage, will be added to the NDSS. With the recent cuts to the NDSS in regards to the ability of a Type 2 patient to acess subsidised testing strips, it feels a bit like robbing Peter to pay Paul. 

I feel left-out. Again. As an adult with Type 1 Diabetes, there's not much on offer, and we are severely lacking in support. There are programs for schools, youth transition services, camps and pump-funding grants aimed towards children; there are telephone peer support programs and educational programs for Type 2 patients, and programs, a dedicated website and telephone support program for women with GDM. There's nothing listed under support for adults with Type 1. This was just another area in which we are being overlooked and underfunded, despite the fact that we face the exact same consequences from not using CGM as those under the age of 21. (In fact, in the report by Tu et al in The Medical Journal of Australia 2008, the mean age for dead in bed is well into the adult years, at age 30.2). 

I would be glad and happy to see young type 1 children be given the opportunity to grow up with a little less stress so I am in no way begrudging the children who may receive this subsidy. A very long time ago, when I found how hard it was as an adult to even qualify for a pump, I made peace with the fact that people don't really care what happens to you when you outgrow your childhood chubby cheeks. An acknowledgement of my loss of opportunity doesn't hurt though. That's probably one of the biggest reason that I had a small tear-fest yesterday. My loss, our loss, in this celebration wasn't even given the briefest of mentions. By any party involved. Even though we campaigned right along side all the parents.

I guess I'll play it by ear, and whatever happens, happens. Given that I had the audacity to both age past 21, and get diabetes as an adult, I'm not holding my breath that the funding will ever extend to me. It will just be a nice surprise. Either way, I hope Labor comes to the table so that the kids of the future will have the tools they need to help manage their diabetes at their disposal.