EXPOsing Diabetes - Redlands Event

This past Saturday I took myself for a harrowing drive down to Sheldon College in Redlands. By harrowing I mean I drove for 20 minutes with a frozen GPS and a steadily-shining fuel light reminding me that I shouldn't stray too far from civilization.

Eventually I found my way to Sheldon College - with 15km of my reserve fuel left to spare - and gambled over to the registration desk for EXPOsing diabetes.

EXPOsing diabetes events are 1 day information exhibitions run by Diabetes Queensland for Type 1 and Type 2 Diabetics. I think I read that more than 300 attendants came along for the day - with about 30 odd of us being Type 1's. The seminars were separated for each type which meant that the programs were tailored to each specific type and their particular program needs.

The Type 1 program that I attended was fantastic. Each speaker addressed us in warm, friendly tones and allowed us to ask plenty of questions; although doubtless this was easier for the Type 1 group as we were a much smaller group than the Type 2 group.

The lectures were informative and I learnt something new from every one of them, and began to consider things about my Type 1 that I hadn't before - like I might be asking for an inclusion to go to an exercise physiologist in my next care plan, as exercise is something I have always struggled with with my Type 1. The seminar on diabetes and driving, given the recent law changes was exceedingly helpful in dispelling some diabetes and driving rumors and myths - and to clarify what was the real deal. That HbA1c under 9% your doctors keep threatening you with is in actual fact just a guideline and not a hard and fast rule - but was put in places for obvious reasons such as the fact that you may be experiencing more tiredness and an inability concentrate with a higher HbA1c.

I was also really happy with the inclusion of the seminar that dealt with more of the mental health side of type 1 diabetes. However that's a blog for another day.

I was honored to sit among Type 1 Diabetics who had had the disease much longer than I have - including 2 Kellion medal recipients. I think I was actually hands down the youngest person in attendance - which didn't phase me. The ladies that I sat with ranged in age from (I think) late 20's to 70's...but the thing about a disease like diabetes is that it can create mutual understanding and friendships between vastly different age groups. The attendance of willing participants proved that you have the capacity to learn and better understand the disease you live with at any age!

Overall I commend Diabetes Queensland on the institution of the EXPOsing Diabetes programs and would recommend anyone who can to attend one - even if you think you know everything there is to know, I gaurantee you you will walk away with at least 1 piece of knowledge about living with diabetes that you didn't have before.

They also have stalls set up by meter, pump and other such companies for you to check out the available products and chat to about if you're thinking about say, moving onto a pump. As an added bonus for me at the event I walked away with a free pump skin from Medtronic Diabetes. I'm happy as pie (I can only assume that being as delicious as they are, that pies are happy). My pump looks vibrant and pretty and I have a renewed interest in mushing buttons to record everything that happens every second of my life (as you are expected to do when you have diabetes).

Help! I think there's a Diabetic in my house!

A guide to recognising the signs that you may be living with a diabetic

• You find these babies everywhere: Yes, even in the stove. Or your shoes. Or the clean washing. Probably in your hair if you have dreadlocks. Maybe in your hair even without dreadlocks.
  
• When numbers come up in any sort of print or screen media, you see your diabetic smiling or frowning, depending on if it's a 'good number' or not. 
• You regularly play a game where you guess the amount of carbs shown in anything on T.V or in movies
• You run out of sugar and your diabetic brings out a stash from their bag
• Mysterious blood spots appear on crockery items and car steering wheels 
• Sometimes you wake up spooning a bag of jellybeans
• At 3am, you hide under the blankets when you hear crazed animal eating noises coming from your dark kitchen
• You used to have spare storage spaces. Now if you try to open your cupboard, you have to duck to avoid being hit by flying syringes/canula sets
• There's sugar remnants all over your fitness gear
• You have more sharps containers and sharps in your house than a needle exchange. And you find yourself explaining to guests that you don't really deal drugs...it just looks that way
• ...but your neighbors actually do think you deal drugs because they overhear conversations about getting high and shooting up
• Every so often the adult you thought you moved in with regresses to the likeness of a 2 year old, demanding to be fed, crying, and unable to speak to you in proper sentences
• You once hired out and tried to watch the Blu-Ray version of 'Hansel & Gretel'. All of a sudden you felt a massive pain to the side of your head and came to to see a monster screeching and smashing the disc into shards. You then had to pay the video store a replacement fee. 
• You can no longer indulge in baking cookies laced with poison as the weekly treat
• The suspect diabetic wears a weird 'box' that they refuse to take off, and it frequently beeps during the night, keeping you up at all hours. The suspect diabetic sleeps through this. You wonder if its perhaps a lullaby-making machine that helps them sleep.

The Value of Health

Diabetes is an expensive disease. My ailing bank balance is testament to this fact. I pay for things I shouldn't have to consider at my age. I don't like handing my hard earned cash over for a small canister of strips that will me last me 5 days. Last financial year my diabetes cost me 1/10 of my total gross earnings for the year.

At the same time, I am very very thankful I am ABLE to buy these strips, and at the subsidised NDSS price. Yes, I would LOVE a health care card to help bring the price down, especially as I am considering study again and know that the only way to support my disease is to work full time and study full time (I've done 4 years of uni already, I am not spending a second more back at uni then I have to). Which will probably take a massive toll on my body and mind. So yes, a health care card might mean I could work part-time.

But I am getting off topic.

As a receptionist at a private practice, I cannot stand it when, after I have told people the price over the phone pre-appointment, people whinge and moan and bitch about the prices to my face at their consult. If people are aware of the price beforehand, I'm not sure what they think it's going to achieve besides making me feel uncomfortable as I wait for them to end their tirade. Everyone has the option to go through the public system if they don't want to pay out of pocket and you are never forced to go through private system. Some people have tried to justify this to me because they say the public system has a long wait time. I understand this, and I sympathize. But what no-one seems to understand is that that is what makes the difference between private and public medical care systems. If all private practitioners suddenly bulk billed everyone, everywhere would have a long wait time.

I also wish people would understand the amount of time medical practitioners spend scraping out a living as a student to become doctors. If I studied for 15 years after high school, I would want to be paid well for it too. Hopefully people can appreciate this relativity.

But the thing that gets me the most is the value that people place on their health. Sadly, it seems people are happier to pay for a new TV than a consult with a brilliant doctor who could help to ease their suffering, or help restore their sight to help them watch their sparkling new TV. As a person with diabetes I place the utmost importance on my health. I happily pay for private doctors, test more and therefore pay for more test strips than the average diabetic, see my diabetes care team whenever requested because I am the one seeing the benefit to my health.

With all of diabetes' added costs I too save where I can. I see a bulk-billing GP (which sadly, under Tony Abbott, looks as though it will no longer exist soon - something I am strongly against as it will just put more stress on hospital emergency departments and also exclude people who are too poor to afford it, such as the homeless, from accessing even basic heath care. Not to mention that having a chronic illness means I see my GP an average of 20 times per year). I use a care plan to see my mental health team and diabetes educator. I get my yearly optometry tests bulk-billed.

I'm not asking everyone to go and join private clinics. The public system works just as well. I'm just asking that people place a higher value on sustaining their health than a new pair of $200 shoes. Those shoes will be out of fashion next season. Your body is the only one you will ever have.

Happy 2 Year Diaversary.

When I was diagnosed with Type 1 Diabetes on a Friday afternoon I was put in hospital overnight and told that I would be there all weekend because there were no diabetes educators available until Monday. I was supposed to go to a friend's baby's 1st birthday on Saturday and regretfully had to cancel. Mostly because they wouldn't let me out of hospital until someone became available who could show me the correct way to poke myself in the stomach with sharp, pointy objects.

That person never materialized and I was released into the wild with 5 pens of NovoRapid and 5 pens of Lantus and no idea how to use them, or anything to do the actual poking with. Thankfully my endo appeared in the wild non-diabetic outside world and heaped upon me many many needles with which to cause myself pain. Lantus burn, anyone?

So every year I get an invitation to a birthday party for a small child I have met a handful of times. And I always wonder why it is that, mixed in with the excitement of being able to go to K-Mart and hang out legit in the toy department while I shop for presents, I feel dread when the invitation arrives in my mailbox.

Vaguely, in the back of my mind, I know it means my diaversary is coming up. I don't know why this causes a black, tangled ball of dread to knot in my stomach. Perhaps its because I feel that with every passing year of having diabetes, I am closer to complications. The doctors tell you that a good HbA1c will help to prevent complications, but that's all it can do. Help. There is zero guarantee that I will never develop complications, and the longer you have diabetes, the more time to develop complications in. But that's a downer. I hope that as the years pass, I will be able to watch this beautiful little girl grow up, and not associate it with a reminder of the 1st time I laid a lancet to my index finger. This year, I distracted myself by eating a Tardis Cake which stained my mouth blue for the rest of the day. Pretty awesome stuff. And a good thing to associate this time of year with.

Does anyone else have diaversary reminders?



Happy Birthday Sweetie. And Happy 2 year diaversary to me - starting it with a BGL of 4.5. :)

27 - 03 - 2012

Brave

I haven't changed my own cannula since my hospital admission last year to get my new pump. This isn't an issue for me though. It's not something I like to do and luckily, my fiance has no qualms with inserting them for me. The other day I thanked him for doing it and made a small remark about how I was happy he was here to help me with them. His comment back was that if he wasn't here, I'd be braver and do them myself. Before anyone jumps onto a high horse about that comment - what he meant was he knew I could do them if I had to.  It's true, I could. But if I don't have to I won't.

We both agree that that's OK. Yes, I could be braver. Everyone can be braver if they have to be. But at the moment, I'm being as brave as I need to be. I'm more capable now than at any other moment in my life so far.

My fellow members of the non-functioning pancreas club continue to inspire each and every day. We are all capable of so much, and we achieve so much all the time whilst dealing with diabetes on top. Ladies & gentlemen, I take my hat off to you. For every finger-prick done in the cold, when you know it means pain for the rest of the day. For every needle done into an aching muscle. For every needle done when the last one bled everywhere and bruised. For every hypo that you face. For every high blood sugar that results in doctors shoving pictures of amputated limbs in your face. YOU ARE BRAVE. We deal with this on a daily basis. We know it sucks, but we get on with it.

You make me brave. And not only because I have to be; but because if a 5 year old can do it, so can I. And if I can do it, so can you. Juts like anyone else out there battling illness, disease or medical conditions, I'll be brave (but not all the time, because if I act too brave, I'll be the one having to kill the super-huge-scary huntsman spiders, and I don't want to).

The not-so-happy post where I feel disappointed in people

We all change. It's inevitable in our lives that as long as we keep living, keep growing older, keep experiencing life and all it has to offer that we will change as human beings. We will always be adding to the lines notched on our door frames.

When things like a diabetes diagnosis happen, the change can be very rapid and not something that we expect. Such life-altering events are going to make us grow as people. I like to think my diabetes helped me grow into a better person. I became stronger. I have passion. I think I changed for the better...except my body obviously didn't, because hey, zombie-pancreas.

I have realised lately, that this is may be too much for people. But I won't apologise. I don't owe anyone an apology for having my life turned upside down and maturing almost overnight because of it. I won't apologise for advocating for MY rights, for the rights of other diabetics, and the rights of anyone else with a medical issue.

I don't know how or why it's too much for people, but I don't consider any of my relationships with other people untouched by my diabetes. Most people have grown with me. But there are some people who don't want to, or can't understand my change. When I was diagnosed I hid my diabetes for a few months. I felt ashamed and embarrassed. Of course now I almost scream it by way of greeting. After 'coming out' as diabetic, I watched my Facebook friend count drop by nearly 20 overnight. I was probably upset about this when it first happened. Now I consider that these people did me a favour. They immediately put up their hands and said 'This is too much for me, I'm out'. And that is fine.

What's not fine, is treating someone differently because of something like diabetes or any other medical condition. I am not okay with people who give me the cold shoulder, who pretend they want to hang out but forever make excuses when before my diagnosis they would happily hang out with no ifs or buts.

If there is something about my diabetes that bothers you, tell me. Ask me about it. I would rather have you explain that you don't feel comfortable with the possibility of dealing with hypo-me or you don't like to look at blood. I can explain to you that hypos these days are very rare, and I have never required emergency assistance. I can tell you when I'm going to check my BGL so you can avert your gaze to the mystical happy-thoughts unicorn over in the distance. Or we can agree that you're just not ready yet and part ways amicably, and maybe one day when the head space is better we can reconnect. Most 60 year olds have amassed a few medical issues, right? We can bond then.

Just don't pretend to be my friend if you can't actually be one. If complete internet randoms are doing better than someone I thought I was close to, then you're doing friendship wrong.

In a way, I find the relationships that I have started after being diagnosed the easiest to be in. People who have only ever known me as diabetic fully accept that it is a part of me. They don't change the topic when I bring diabetes up. And yes, I do talk about my diabetes. I am trying very very hard to keep this to a minimum, but my diabetes is with me 24 hours a day, 7 days a week for the rest of my life. It plays a part in everything I do, so yes, I might bring it up sometimes. Asking me never to mention it is almost the same as asking a parent never to speak of their children - you know, those miniature adults who hang around ALL the time? Yep, diabetes doesn't leave me alone either. Similarly to a small child, it also requires regular feeding and frequent middle of the night wake-ups.


So to those of you who stuck by me, and realised that we could still have a good relationship, thank you. To those of you haven't quite gotten there but are trying hard to understand the newer me fresh-out-of-the-box with broken pancreas, thank you. To those new people in my life who don't bat an eyelid when the nasty 'D' word is mentioned, thank you.

Hanging up my Line

Normally, if you asked me, my pump is my life-line. I couldn't live with out it. For me, getting my pump was the turning point of my diagnosis, when I knew I could do this - live with diabetes - and live well, for the rest of my life.

Recently I have taken a HUGE disliking to wearing my pump. I know the benefits of my pump far outweigh the cons - where the only con I perceive is that I am attached. But right now, its bugging me. Alot. Just being attached. I need to detach myself. For a little while, I want to feel more free...I want my skin to be completely naked. I want to run my hands over my body and not stop at the jarring clear cannula, I want shirts to glide over my body and I want to wear clothes that cling and don't show the tell-tale cannula bump. I want to get dressed in the morning without the routine clothes-shuffle around my line and decision on where to stick my pump today. 

I have no idea what brought this on. Maybe I just need a change in my routine. Maybe I've finally cracked it. Most likely the second option - the last time I was on MDI people had to dodge flying needles when I threw 'I-Hate-Needles' tantrums. Which happened at least twice daily.

 Unfortunately, just upping and changing back to MDI isn't something I know how to do or can do. I need to see my educator because - this is terrible - I have forgotten how to do a needle. I know there's some pinch up of skin maybe, and a certain angle you're supposed to inject in? I also have no clue how many units of long-acting to take and when. Which presents a further problem of cajoling my diabetes care into supporting my venture back into the dark-ages of MDI. Which I can almost fully presume they will not be on-board with. Basically, I'm the poster child for pumps; I advocate pumps to young and to old. My care team will probably vehemently remind me there is no way I can match my current BGL control whilst on MDI.

But you know what? I don't care if I don't have tight control. I know a pump break for me will last as long as a well-loved pair of cheap K-Mart flats. (basically, not long).

And I guess that's the thing - It's my diabetes. No matter what my care team think about my decision, I will get my pump break. The person with diabetes, their needs should always be considered first. They need a break, let them have a break. They want a pump? Let them have a pump. 

The challenge for me now is to find a way to get past my extreme fear of needles long enough to actually disconnect my pump and do my first shot of long-acting. I was thinking I could actually wean myself into the pump break by doing long-acting shots but keeping my canula in and doing bolus via my pump.

Any readers out there have any suggestions for a pump holiday? Or on getting over needle phobias?