Two weeks ago, I happily sacrificed my study week at uni to attend the OzDAFNE course at Diabetes Australia – Vic. Granted, I probably worked myself into the ground the week while trying to finish all my assignments. But it was mission accomplished! (sorta), which meant I could tackle the course with one less worry on my mind. So what is OzDAFNE exactly?
Day 7 – Share three blog posts you’ve loved throughout the week.
I can’t believe we’re at day 7 and nearing the end of diabetes blog week! I’ve been collecting some blog posts that I really enjoyed throughout the week. I wish I had enough time to read more but with exam time nearing, things are getting a little bit hectic. And to only choose three blog posts to feature does my head in a bit, because there’s something I can relate to in every post (or look forward to) and I love reading about other’s experiences with diabetes in their lives. But from the limited posts I was able to catch up on this week, here are my three favourites I would like to share, in no particular order.
I was incredibly touched by the bond these two sisters have for each other. Our family don’t really discuss our feelings very often and it is very rare that we bring up the topic of my diabetes. But I know that the concern is there. I remember several times during band rehearsal, when my sister will come up to me asking if I felt okay cos I looked very pale, as that’s one of my hypo symptoms. Even though I came back with normal readings, I love the fact that she picked that up and asked. Or if I’m having a bad diabetes day with hypos and I may write something on facebook about it. My baby sister will get concerned and tell my mum (this was before she discovered facebook). So I love Kim’s post for the reflecting the family love that I have and how important being in that supportive environment is and having cuddles on cue is probably the best thing ever about living at home!
This was a very powerful post that struck a chord very close to home for me. Reading this made me want to give Georgie the biggest cuddle. I was diagnosed in my second year of uni and I very much remember my drive home from the GP after she told me I have diabetes. I felt the same way. I just wanted to drive somewhere. Anywhere. Be alone. I wanted to be anywhere but home because I knew mum was home and I just couldn’t tell her. Not yet. After a lot of tears, anger, frustration and questioning the universe, I finally ventured home and it even wasn’t after a few days that I plucked up the courage to tell her. The wave of emotions, shock, fear and realisation that you have diabetes is…indescribable. But overwhelming and draining are some words I would use. Thank you Georgie for sharing such a raw and emotional post about your diagnosis.
I have this to look forward to when I hopefully get started on a pump. Having seen those beasts of a cannula inserter, it actually freaked me out a bit. I’m sure over time you get used to it like you get used to the injections. But those cannula inserter sets look MASSIVE! Or as Ashleigh adequately describes it – like a pokeball. This memory reminded me of the time I learned how to test my own sugars. It took us a good few deep breaths before I was ready to push that clicker button to prick my finger. Surprisingly, it didn’t hurt as much as those damned disposable lancets that make you bleed forever. I loved the candid description she gave about trying to feel the cannula under her skin and I reckon I would do something similar!
Day 5 – Visual, literal or musical.
D is for…
D is for the dark days we have
Where blood sugars represent a roller coaster
And the sight of lollies leaves you gagging
Yet we persevere on
D is for the dumb questions we get
No, there is no good and bad diabetes
No, it’s not curable by diet and exercise
And no, it’s not contagious
D is for dominance
Something diabetes doesn’t have over me
Diabetes will never be the boss of me
I will triumph
D is for damned
For which we are most certainly not
Diabetes does not determine my life
I am not afraid to dream big!
D is for the dreams we have
For everything we want to achieve in life
Nothing will get in our way
Especially not this sneaky pancreas
D is for diabetes
This terrible but enlightening ‘disease’ we have
Full of bad times but good discoveries
Such a bittersweet diagnosis
Day 5 – If you could swap with one chronic condition, which would it be?
Swap? SWAP?! Could I just “swap” for no chronic condition? Pretty please?
I can’t even begin to imagine what it would be like to live with any other chronic condition apart from diabetes. I’ve grown accustomed to life with diabetes, just like Sideshow Bob grew accustomed to Bart Simpson’s face. A diagnosis with any chronic condition is a life changing event and the thought of having to adjust life again just makes me cringe. Not that we have much choice in the matter of course. I think every condition has its bad sides and good sides and it’s easy to get buried and lost when times get tough. It’s also interesting how having a ‘condition’ or ‘disease’ has that natural connotation of a tough and limited life. But it definitely doesn’t have to be that way. My boyfriend is very timely at reminding me that if we focus on the negatives, that is all we will ever see. Diabetes, like any other ‘chronic condition’ has changed my life. However, I refuse to say that it has made life more difficult or complicated. That’s not to say it hasn’t at times of course, but everyone has their own struggles and little road bumps here and there. Instead, I would like to say that diabetes has changed me for the better. And in many ways, it has.
Diabetes came as a rude shock to me, my family and friends. I remember going out for dinner with my friends and refusing coke, saying I can’t drink it anymore because I have diabetes. I was greeted by a stunned and awkward silence. I remember sitting in front of a meal and just dreading eating all the carbs because I knew it would affect my sugar levels. I remember being disappointed when I excitedly told my doctor that my levels have finally fallen below 10 but still wasn’t good enough. I was even more upset when my endo told me what my target range was. (Hint: it was far from what I was at!) I remember the dread of going onto needles and feeling like I’ve failed myself and mum because she had worked so hard to keep us active and eating right to avoid this. I remember feeling like my world was collapsing around me. Most of all, I remember feeling so alone, isolated, lost and hopeless.
I tried desperately to reach out. I didn’t know what I was looking for but bloody hell was I looking! I tried attending educational services like carb counting and asking about support groups for people my age. But I was told there was nothing for me because on paper, I had type 2 diabetes and not type 1. Everyone in the waiting rooms at my clinic were generations apart from me. Needless to say, I didn’t make many new d-buddies there. But then I found out about Diabetes Camp Victoria, and my life changed.
Going on my first camp as a volunteer was the most liberating experience I’ve ever had. I found a new family – my diabetes family. They welcomed me with open arms and took my under their wing. Suddenly, I had a group of people who understood my frustrations with diabetes. They opened my eyes to the world of type 1 diabetes and to say I learned a lot that week of camp was an understatement. They didn’t let diabetes stand in their way of life. No way! They have accepted it as being part of their lives and carried on doing what they want. To say that these guys were inspirational is also an understatement.
Since discovering camps, I’ve also discovered the diabetes online community (DOC) through blogging and joining the twitter sphere. All I can say is that some the achievements that these guys have accomplished has my mind blown! The DOC is such a supportive and warm environment. Even during times of controversy within the community, we are always there for each other. And can I just say the DOC has kicked some serious troll butts in the past! Just goes to show that you should don’t mess with diabetics! Ever! And because the DOC reaches out worldwide, there is always someone online willing to keep you company while treating that 3am hypo. The DOC never sleeps!
Another thing I would credit the DOC for is for being my inspiration and motivation to keep pursuing my research and studies. Young adults with type 2 diabetes are definitely a minority and sometimes they feel like they aren’t being heard. Having been in a similar situation, I’m determined to help them by being a voice. I’ve always liked helping and educating others and now I am very much looking forward to giving back as much as I can to a community who has helped me out by reminding me of all the good things embedded in life with diabetes. And I think it’s for that very reason that I refuse to swap my ‘chronic condition’ for any other!
Day 4 – Greatest accomplishment in managing your diabetes.
What seems like an everyday routine for some, may actually be something crazy for others. We often overlook and take for granted things that we do on a daily basis. I’m sure we’re all familiar with people see us testing or injecting and they say ‘I could never do that’. Well, if we were talking about choosing to live and be healthy or to die from diabetes complications, I know you will do what you need to to stay out of the second category. Having said that, what people living with diabetes deal with everyday is no simple feat!
I remember the first time I pricked my finger to test my sugars. It took me a good few big breaths before I plucked up the courage to click the button. Since then I’ve done it at least 5 times a day, everyday. Same goes to the first time I injected myself. The first month after starting on injections saw my tummy area filled with all sorts of colourful bruises because I just couldn’t get it right. That’s not saying the bruises don’t occur from time to time now. But compared to what it was when I first started, I think it’s fair to say that I have come a fair way. Basic diabetes management skills involving needles – mission accomplished.
Another achievement that I am proud of myself for is the reassembling of my diabetes healthcare team. I was initially really happy with the team that I had been referred to, especially seeing as I have not been exposed to other diabetes healthcare professionals. But even within the hospital I was at, I would never see the same endo more than twice just due to workings of a public system. I was lucky enough to have the same educator most of the time, who was great. However, there came a point where I felt that they didn’t know what to do with me anymore. And because my endo was always changing, further testing plans always got lost along the way and so did repoire. I knew I should get a second opinion, but I was too scared of finding other doctors and having to find out the processes and the way things work beyond the system I currently knew seemed like too much. It was pretty much fear of the unknown and feeling daunted by the paperwork process. There was a lot of waiting and chasing things up from various people, but it was definitely worth it at the end. I found a fantastic private endo, who I’m sticking with, who understands the position I’m in with my diagnosis and is willing to do what it takes to get the best management plan suited to me.
On top of everything, I think my biggest accomplishment to date is simply not letting diabetes get in the way of life. It’s too easy to get into the mind frame of always being and feeling sick. And it’s definitely way too easy to use diabetes as an excuse for things. (especially when it comes to exercise!) Some days of living with diabetes is definitely tougher than others, but so far nothing has stopped me from anything that I’ve set my mind to.
Day 3 – Share your most memorable diabetes day.
I remember the initial panic of sitting in my endo’s office and being told that the tablets weren’t working. We needed to move onto injections. I was really upset because I had been working extremely hard while being on the tablets and being told that I needed to go on insulin made me feel defeated. I think this is something that most people with type 2 diabetes experience when they start on insulin. That feeling of guilt and anger at yourself for not doing enough.
Yet there was a part of me that knew, subconsciously, that I had done everything I could. I woke up at the crack of dawn every weekday to head to the gym to do either a spin or bodypump class. They were all intensive classes that left me sweating like a mushrooms that haven’t been stored in a paper bag (possibly the worst analogy ever?). I was obsessive over what I ate and reduced my portion sizes dramatically. I felt like I was starving myself at one point. I knew this wasn’t a lifestyle I could sustain. But was there more I could have done to prevent going on insulin, or even diabetes altogether?
We hear it everywhere – that type 2 diabetes can be prevented with a healthy lifestyle with healthy eating. We’ve grown up with it – that it’s our fault we have type 2 diabetes because we haven’t looked after myself. But I never expected to be diagnosed with type 2 diabetes at 19. When I’ve been physically active and eat fairly well. I did a pretty damned good job of looking after my health at that age, when most of my friends were out partying, clubbing and drinking. I couldn’t comprehend why or how this was happening. Sometimes, genetics just sucks!
I guessed how I felt came through because my endo reassured that I was doing an amazing job on my part but my body is just stubborn. The insulin will just help make things easier for me and manage my sugars much better too. There was no point in working myself to the ground just to manage my sugars and let diabetes dictate my life. And I agreed. I was given the choice between starting on a Mixtard twice a day or Basal/Bolus four times a day. And what happened next felt like a major turning point for me. Instead of having my endo determine what regime I was going to do, I sat up a bit straighter and said confidently ‘Let’s try having it twice a day and if it the numbers still don’t budge, we can do four times a day.’
Did I just have a say in my diabetes management? Did I just choose to go insulin? This endo is so sneaky! He immediately sat back, smiled and said alright let’s do it.
It’s been three and a half years since I started on insulin and I’m now on the basal/bolus regime and I haven’t looked back since. My Hba1c took a dramatic dive from the high 9s to 6s since starting insulin and I’m much more relaxed with the things I eat. It has taken me a long time to stop feeling the guilt and anger of my diagnosis and accept the fact that I do have diabetes (whatever the type may be). I can’t do much about it but to move on, manage it the best I can now and live my life to the fullest! To diabetes dictating lives, Ashley says no! (Cringe factor of a 100 for that corny statement!)
Day 2 – If you could petition anyone, organisation or project, what change would you ask for?
Funny enough, I am currently petitioning the National Diabetes Service Scheme (NDSS) for equal healthcare access for everyone living with diabetes. Now, just because I’m petitioning them doesn’t mean I am disgruntled with them. Without the NDSS in place, the majority of people living with diabetes would not even be able to afford the medication to keep us alive. Things like insulin, oral hypoglycaemic agents, needle tips, syringes and test strips are all heavily subsidised by the NDSS, which is a government initiative and run by Diabetes Australia. In that sense, I am eternally grateful that we have this in place so we can afford the basic necessities of living with diabetes.
However, when it comes down to subsidies for pump consumables, that’s a different story. There are certain criteria individuals have to meet before being eligible for pump consumable subsidy. The criteria listed for eligibility is listed here. They’ve covered just about every category of diabetes in there – except for type 2. There’s a blanket ban for people with type 2 diabetes who are currently using insulin to manage their condition. What’s the reason for this blatant discrimination? Here are some of my theories:
People with type 2 diabetes are generally managed by tablets or lifestyle changes.
While this is true for most people with type 2 diabetes, keep in mind that there is an increasing number of young adults that are being diagnosed with type 2 diabetes. Although they may be initially responsive to tablets, they may decide that insulin therapy would suit them better down the road. Particularly for ladies who are thinking of starting a family, we would most certainly be needing insulin to cope with the crazy hormones. How handy would being on a pump be while you’re planning for that baby, to get on top of the BGLs and not worry as much during the pregnancy about having multiple needles? One less thing to worry about!
On top of that, not every case of type 2 diabetes is due to poor lifestyle changes. Sometimes, it just happens because it’s within their genetics. Diabetes is not always black and white. Some people don’t fall clearly within a specified group. Let’s take me for an example. Because they’ve eliminated me from the type 1 category, their only other option is to put me in the type 2 category. This is despite the fact that I’ve always been a healthy weight, physically active, and non-responsive to tablets. I started insulin therapy two years into my diagnosis. Does that sounds like a typical type 2 scenario to you? Although I have finally convinced an endo to change this for me, there may be many others in my situation out there.
Providing us with a generous subsidy for the basic things we need is a luxury. I know of many people in other countries who have to ration their strips because they are only allowed so many per month. How do they expect us to be vigilant in managing our diabetes when we are rationing medical supplies because we can’t afford more? So I’m grateful for NDSS in the regard that we have our basic needs covered and I acknowledge that this is also very costly to our government. Although improving quality of life for us may not be on their high priority list, what about improving diabetes management to reduce the risk of complications down the track? From my understanding, it’s much more costly to manage a complication, particularly if we need to be admitted into hospital and with the limited availability of hospital beds, this is a huge issue for us at the moment. And there is evidence in the literature that insulin pump therapy is the preferred option to help achieve good glycaemic control to reduce the risk of complications. Isn’t prevention better than cure?
At the end of the day, the percentage of people living with type 2 diabetes who are on insulin are quite small. I’m guessing that the percentage who would be appropriate for insulin pump therapy would be smaller. So, I don’t see why a blanket ban is quite necessary.
What do you think?
If you would like to support this petition, you can add your name to the list here and I would be very grateful and thankful!