Tuesday, 4 October 2016

The Cure- Part 2

A while back I wrote about my thoughts on a cure.
Tonight's ozdoc chat on twitter  focused on our thoughts on a cure, and what it would mean.

Some really big issues came up, and one really stood out for me. If we did have a cure, who gets priority?

It looks deceptively simple. I know my first thought was children. Babies who can't tell when they're running high or low. Little kids who are terrified of needles. Parents who never sleep the night through.

But then that got me thinking, how can I compare individual's experiences of living with this? What makes the 4 year old with t1 more deserving of a cure than the hypo unaware 25 year old living alone, not leaving their house because they're afraid of going low? What about the pregnant woman who has to keep her levels stable for the sake of her child? What about the teenager who is isolating themselves because they're ashamed of their condition and just want it to go away?

What about me, a 20 year old uni student who can't turn off her diabetes brain?

How can we make that kind of decision? How can we put one life above another, when we're all in this diabetes boat together?

Don't get me wrong, instinctively I absolutely think kids, pregnant women and the hypo unaware should go first. I have a better shot at lasting through it than they do.

But should a cure become a reality, who exactly makes that call?
Is it a politician catering to the majority of their potential voters for the next election?
Is it an insulin company looking for the quickest sale?

Then you come to the dilemma of price. Will t1 become a poor man's disease? If a cure is available that's fantastic, but there's only so much you can sell for it. So do we give it to lower socioeconomic families first?

I don't know. I don't know how anyone can make that call. Everyone within the online community works hard for advocacy, improved technology and maybe even a cure. But what happens when it's available? Do we still retain that solidarity, or does our hatred of the illness mean we all want first dibs?

I have no answers, just lots of questions.

Wednesday, 21 September 2016

World Alzheimer's Day

The 21st of September marks World Alzheimer's Day, a part of World Alzheimer's Month. My grandmother had dementia (likely of the Alzheimer's-type) for many years and passed away in 2014. We're encouraged to use this month to focus on the prompt "Remember Me", where you reflect on your favourite memories, or those of a loved one. These aren't my favourite memories, but they're important ones. I wrote about some of the good memories here

I have never hidden my diabetes from anyone except my grandmother, and it was quite the effort. For four years I didn't test my sugar in front of her, didn't touch my pump, and didn't say a word about my now broken pancreas. She never knew about this really big part of my life, and that makes me incredibly happy in some ways, and sad in others. Not knowing about it meant that I couldn't share some of my achievements with her, like starting work with Trapeze, or doing my major work in high school. But for her sake, I'm happy she didn't know. She had dementia, and at that point it was so far advanced that she may not have understood what was going on. Even if she did, it wasn't worthwhile upsetting her because you'd have to keep breaking the news again and again. Which makes me wonder, why are you telling them at all?

So instead of inflicting that on her, I decided not to tell her. We visited her regularly, and she forgot my name. She would ask at first, but then after a while she forgot my relationship to her. This was probably one of the most difficult things about dementia. I was very close to her as a small child, and she almost felt like a third parent because I saw her so often. But she forgot, and my role changed to seeing her not for my own benefit, but for hers. I'm not sure what it was, but despite not knowing who I was or how she knew me, she was almost always very pleased to see me. Maybe it was because I was young. A lot of the nursing home residents and staff liked to talk to me because they had seen me grow up over the years of coming in.

Whenever we came to visit, she would insist that I come and stand close to her, and sometimes hold her hand. This suited me fine because I had a lot of trouble talking to her. I never knew what to say, or how to say it. Now having studied speech pathology, I know how to communicate with people who have dementia and aphasia. But at the time I didn't, so I would just stand nearby and smile at her a lot. Sometimes I'd bring in videos of myself playing the piano because she really liked the music. I don't think she minded this arrangement.

She would have a pretty typical routine every time we visited. She'd look at each person and comment on what beautiful eyes, noses and mouths we all had, and ask the others to agree with her. She'd repeat this a few times over, sometimes ask why we were there, and where we were going.

Sometimes it wasn't so nice and she would be a little upset or angry because she was disoriented. Sometimes she asked when she was going home, even though she hadn't been home in years. Once she thought I was my mother, which was tricky to navigate. I'm certain there were more occasions where things didn't go very well because I remember leaving the nursing home upset pretty often. But not remembering them is probably for the best. 

Most of my memories of her are in hospitals or the nursing home. I was under 10 before it accelerated due to a stroke, so I can't remember many things. I can't quite remember her voice. I can't quite remember her perfume. But I do remember how much I loved her, and I'm pretty sure that was mutual.

Thursday, 15 September 2016

When patient advocacy and speech pathology collide

I've been working as a youth representative for Trapeze for a few years now, and have found that patient advocacy has become a huge part of my life.
As a part of this role I recently made this short spiel on the importance of providing care that is age and stage appropriate. Huge steps are being taken toward making youth friendly services for young people with chronic illness, which is very exciting!

(Apologies for the loud clang at the beginning. I'm uncoordinated even when sitting down)

I've spent quite a lot of time lately wondering how I can make my interests work together. Speech pathology and patient advocacy for young people with chronic illness. They just didn't seem to gel together the way I'd like.

Now that I don't have placement on I've found myself with time. Instead of using this like a normal person would (by relaxing), I chose to apply for a scholarship and write a voluntary essay this past week.

Sounds insane. It probably is. But from doing all of this writing I think I've worked out the link between my interests. Holistic client care. The reason I'm so vocal about patient welfare is because often people are grouped by their condition. Age is one factor that makes us different, but there are many others. Things like our personality types, goals, jobs, self-demands, and lifestyles are huge, and they're often missed. To me, a good health professional is one who takes the whole person approach, and I'd like to apply that to my practice as an allied health professional as well.

I'm interested in hearing your views- have you ever encountered the experience I described? What is the making of a good health professional for you?
Maybe one day there could be an industry standard, where we can make a comprehensive rundown of the person we're treating rather than the condition. File summaries exist but there must be another way to truly represent the person being treated. Maybe it will be the e-health record, who knows.

What could work for you?

Tuesday, 13 September 2016

Petty diabetes battles

Sometimes my diabetes gets the best of me. Sometimes it means I can't do things I would like to and when it happens I feel angry. Really really angry. I hate that my body attacked itself and that even when the brain is willing sometimes the rest of me isn't. It's almost like I've lost control of how my body functions, and lost confidence that it can function correctly.

So, being the stubborn cow I am, sometimes I fight back. With myself... yup.
I've been walking every day lately (yes I know, EXERCISE. I can hardly believe it either) and today was no exception. I was looking forward to walking back to the station from uni with a friend. I'd been hanging out all day through a stats lecture and tutorial to be outside again. I walked to uni that morning as well, who knew exercise made you feel better?

But when the time came my level was 5.0 with a bunch of insulin still in my system from a later lunch. It was dropping quickly into the 4s and as it did I grew more and more frustrated. 
How does this happen? The one time I try and do something positive for my physical and mental health and no. Not allowed. I'm incredibly sensitive to even light exercise so I knew that the walk would make it absolutely crash.

In my charming low state I decided that I'd had enough of this crap. I ate a stack of carbs, turned on a temporary basal rate on my pump to give me less insulin and waited. I'd decided that I was going on this walk as an enormous "screw you" to my diabetes. I didn't care how long it took, I was doing this.

Great logic right? Defy the diabetes and it often hits you back later. I'd eaten probably around 60 grams of carbs uncounted, just to make it go up quicker. For my non diabetic friends, the usual amount of carbs for a hypo treatment is 15g. 

And I'm now a stunning 13.5 which considering the insane amount of uncounted carbohydrate is AMAZING thank you very much. 

Obviously my management is not amazing at present with my dodgy carb counts (or lack of carb counts when I'm on a low sugar vendetta) but I totally won. Was this dumb? Yeah a bit. But I did it. I did that walk and I damn well enjoyed it. Take that you miserable bitch of a disease.

Friday, 2 September 2016

The Diabetes Brain

There's a bit of a theme lately from a few of us in the DOC. From Frank's post on guilt to Kelly's tweet on the brain never being off, it seems we're all experiencing the same thing. You can't switch off the diabetes brain.

At some level I'm always aware of my diabetes. From the moment I wake up, to the last check before I sleep. No food is not thought about, whether I carb count it properly or not.

There's a constant stream of questions running through my head:
- When did I last eat?
- What did I last eat?
- Did I finish that? Did I get enough of the carbs? Do I need more carbs? But I'm not hungry.
- When am I supposed to eat again?
- How much insulin do I have active right now?
- Do I have to walk anywhere soon? How far? How long after I've eaten am I walking somewhere?
- Am I doing something different tonight? Do they have gluten free food? Is it gluten free food with carbs in it? Will I be home late? Am I sleeping at home? Should I set an alarm for 3am since I'm staying at a friend's place? Will that wake them up?
- How many carbs was in that? Did I do it right?
- What is the weather like today? (Yes, seriously. It was cold today and my sugars were low, warmer weather and they were higher)
- What part of the month am I in? (I can feel the gentlemen recoiling, sorry guys. Fact is sugars vary wildly in stages all month long. Lucky us right?)
- How far do I have to drive? Is it over an hour? Do I have to pull over? Where can I pull over?
- I have a placement session. How long is my session? When can I check my level? Should I eat something now? Or after? Can I leave this kid alone for a second to check my level? Am I nervous or low?
- My mouth is dry, I counted my carbs wrong. I can feel it's high. Do I smell of off fruit or nail polish remover from the weird sugars? Wow that's professional/attractive. Can I quickly get some water and a mint? Where's my fingerpricker?

And that's just the extra thought. I'm aware of it and assessing for symptoms of a high or low at some level constantly. Even when I sleep I've been known to wake up in the night and immediately check my sugar to make sure that's not the cause.

But I'm not sure that we can actually turn this rubbish off. Because it's kind of essential to be aware of it on some level. I genuinely have to think about these things and automatically do. But it's tiring. It's many many years of thinking about it 24/7.

So to the fellow T1s I feel ya on the overthinking front. It genuinely doesn't switch off. I'm not sure what to do about it either and I wish I had an uplifting way to conclude this. Sometimes I argue with it and say "screw it I'm doing this anyway", but that doesn't stop the thinking either. Maybe there's a way to make it a little quieter.

All I know is we're all doing the best we can, and we shouldn't feel guilty. But we do anyway.

Tuesday, 16 August 2016

Talking to a PWD 101

Tonight on the OzDOC chat (thanks again to Frank at type1writes.com for introducing me to this!) we were discussing diabetes and mental health. I'm very passionate about this and was really excited to talk about it. The chat was wonderful and some really great points were raised, but it got me thinking about how we can help non T1s around us to support us.

I usually don't discuss my diabetes and mental health with anyone besides my parents, psychologist and very few close friends. It's a tricky topic and it often makes people uncomfortable because they simply don't know how to respond. Usually when someone comes to us with a concern, we are able to draw from our experiences to listen with empathy and act as a sounding board/support. But when you add in diabetes, people start looking like a deer caught in headlights. Suddenly the link that helps them develop empathy vanishes, and it becomes a very awkward experience. Here's some strategies that I would find comforting from friends and family. This may not apply to everyone, but it's a good starting point.

Talking to your friend/family member about their diabetes and mental health 101:

  • Please don't freak out if we say our management is lapsing a little. This is a time for support and understanding, not a time for panic stricken faces and "but you're still managing it right? RIGHT?!" Yes it's serious, but there are other ways to help. Maybe try asking them what's making the management hard right now, or problem solve to find a way to get some help managing. 
  • Now is not the time for stories about Great Aunt Mildred who lost her foot and died of kidney failure. I know you're trying to be empathetic by relating it to something you know, but you're digging a very deep hole. 
  • Please don't behave as though T1 is the simplest thing in the world to manage and that after having it for X number of years we should be pro at it. It's not easy, regardless of time post diagnosis. By saying this you're telling us that we don't have a right to feel this way. Everyone has a right to their thoughts and feelings.
  • Please don't try and shift the topic straight away because you're feeling uncomfortable. This person has trusted you with something very personal and important. If you don't feel comfortable, at least offer them someone else to speak to who is better equipped. 
  • We might not be coming to you to fix it. You can't "fix" diabetes. Wanting to fix it comes from a good place, but sometimes we just want to talk about it. 
  • Understand that you can't understand my experiences entirely, just like I can't understand yours. Why? Because I haven't lived them. This doesn't mean you can't help, but there's a difference between offering support and claiming to know exactly how someone feels.
  • Treat them as you would any other loved one who comes to you with these concerns. The diabetes doesn't make much of a difference, it's just a different challenge. 

T1 is frustrating, upsetting, depressing, anxiety inducing and much much more. Having support is crucial. Creating a safe space to talk about these things is important, as sometimes it's hard to start the conversation. So what's the take home message?

Listen, don't assume, and acknowledge that it's okay for your friend/family member to feel the way they feel. Chances are that's all they need to hear.

Tuesday, 26 July 2016

Reasons why my diabetes doesn't want me to be an SP

My diabetes has had a 3 year vendetta raging against getting a tertiary education. It doesn't want it. It doesn't want to be a Speech Pathologist at all.

Reasons why my diabetes doesn't want me to be a Speech Pathologist:

1) Every single time I have a clinic session, it pulls out a low.
I have to set temp rates (lowering my background insulin dose) and eat before every session because I know it won't hold out.

2) It strikes when I'm trying to do my session plans. They're essential parts of clinic and compulsory with a strict deadline each week. My sugar sabotages this by going low and making me exhausted. Not conducive to session planning at all.

3) It likes to give me a reputation as completely unstable. My first lecture of second year involved me sitting in the front row sobbing because I was having one of those emotional lows. The kind where I was confused as to why my eyes were "leaking". That poor lecturer was great, too bad it looked like I was sobbing in response to her opening presentation.

4) I start every semester just like I did today:
<4= hypo/low sugar
2.9= waking up with your brain acting like it's drunk

Graduation is going to be a blast! $50 says I hypo when they hand me my degree.

Tuesday, 12 July 2016

2 Years Ago

I was interviewed almost exactly 2 years ago for this video with Trapeze as I'm a Youth Representative. Tonight's OzDOC twitter discussion focused on healthcare services and it reminded me of the hoops we jump through to access quality health care. It reminded me how much has changed regarding my healthcare management, plus my life in general.

So now I'm in my third year of speech, I don't lisp any more thanks to my speechie, I'm 20 and I put that insulin pump (Dobby) through an x-ray shortly after this was filmed.

I remember at this point in my life being very frustrated with the healthcare system. During this interview I had just been referred to a new endocrinologist and had my first session. It didn't go very well as you can probably tell by the video. I felt a bit lost in the system at the worst possible time. I had just finished my first semester of uni, I had all of these expectations heaped on me and I felt ready for none of it. I remember being afraid of how much responsibility I had to take on regarding my health. I was learning how unhelpful most government departments were.

I look at this video and see a girl who had no idea how the system worked. I was someone who hoped that everyone wanted to help and that procedures would be in place to get me through this time period. There were some, I had Trapeze! But I never expected to have so little support and so many issues from government agencies. I never expected I would have to enter the private health care system to receive the treatment I needed. It shouldn't be like that.

The public system is underfunded and understaffed. I don't blame the health care professionals for that at all. I think they work incredibly hard with what they're given, and they have my gratitude. But unfortunately my experience was that someone like me slips under the radar a bit because I'm not a priority. I'm an over-manager, not under. There wasn't much support for that, nor was there a relationship between my specialist and I that was facilitative. I felt directed sometimes because my specialist's time was so limited. Now that I've entered the private sector since this video I'm receiving that care I need. I'm very focused, controlling and persistent. I need an endo who can work with that and support me. I found one, just not where I expected.

Is my health care experience perfect now? No. But it works for me and I get a lot of support. I hope that seeing young people's experiences with this system is a wake up call for government agencies and funding bodies. Teenagers shouldn't be left to navigate this system alone, that's what Trapeze is for. But the system shouldn't be so messy in the first place. I'm not sure what I can do about that, but I know that as a future health care professional I will ensure that my clients direct their treatment and that they feel their voice is heard.

Monday, 11 July 2016

National Diabetes Week 2016

Apologies for my blog hiatus. It always happens after Blog Week. I love Blog Week but it makes me exhausted and I don't feel like touching this thing for a while afterwards.

It's National Diabetes Week here in Australia, yay! Well, partially yay. It brings awareness to the conditions yes but sometimes I'm not overly fond of their theme selections.

This year it's diabetes related amputations, great huh? Cheery. Wonderful. I feel inspired already.

Seriously though, it is a very big thing and yes it does need attention. Like every other person people with diabetes of any type should be encouraged to look after their health as best they can and seek support when they're having trouble.

However, for type 1s (or at least this one) it feels a bit like a scary unknown. I don't like to motivate myself using scary things. I mean it wouldn't be nice if everyone tried to motivate themselves to live a healthy life by thoroughly studying their family medical history and determining their risk of cancer/heart disease/dementia/Parkinson's etc.

My family history consists of basically every major disease known to man, so I think I'd be living in a plastic bubble if that were my approach.

Personally, this week I think I'll just be hoping to spread awareness in any way I can.
Diabetes Victoria have a nice initiative- Diabetes Won't Stop Me.
JDRF have a great initiative of getting 1000 people to sign up to the JDRF One Walk (formerly the Walk to Cure Diabetes).

Here's a link to their site: http://walk.jdrf.org.au

Taking on that spirit instead, Happy National Diabetes Week!

Monday, 23 May 2016

The Ketone Strip Shortage

I just saw a status posted by a friend of a friend, and it opened up a whole new world to me. I did a bit more digging and finally found out more about the nation wide ketone strip shortage. 

T1Ds use ketone blood or urine strips to test our ketone levels. Ketones occur with very high sugar levels, or when you’re sick. In t1ds the presence of ketones with a high sugar is very dangerous and called diabetic ketoacidosis (DKA). The body begins using its own supplies for energy and the glucose level rises.

In short, DKA is the threat high sugars pose. It can lead to organ failure, coma, and death.

We aim to keep ketones under 0.6, anything over that and there’s an emerging problem if your sugars are over 15 as well. 1.5 and you often need to seek immediate contact with a healthcare professional.

The ketone strips we use are inaccurate, or expensive. Ketone urine sticks have a 20minute delay, but they’re cheaper. Ketone blood strips are more accurate, but don’t come cheap and only have 10 in a box. I got sick when I went to Tasmania and had to go through a few of these strips. But even though I was sick I was treating them like gold because they’re expensive. But they’re also oddly rare.

There’s a national shortage of these strips all the time. For some reason supply is never meeting demand. 

Turns out people on the low carb ketosis diets (people trying to get ketones to lose weight) are buying them. Ketosis isn’t dangerous for them because it’s not ketoacidosis, because they don't have the associated high sugar. There are pages and pages of people encouraging it all over the web. I found them. They’re full of tips, and even specific information of where in the chemist you can buy the strips. One person even laughs at how no one really needs to have them, but it’s nice for a nerdy person who’s interested in tracking ketones. Some T1s use them for their own ketosis diets and encourage it.

So these strips are being used for a fad diet.

As a few of my friends can attest I was absolutely filthy for a solid hour. How dare these people on fad diets buy out life saving equipment for what is basically “fun”? How dare they leave us with the useless urine sticks that have such a big delay and inaccuracy that there’s very little point to them? How dare they abuse the enormous gift they have of not NEEDING to do that?

So I threw this enormous rant at my mum, as usual. Of course at first she was as angry as I was. But then being the logical, kind person she is, she gave me a different perspective.

Disclaimer: I’m still really annoyed about this and will contact the suppliers of ketone strips to do something proactive about it. But I do acknowledge this side of it.

The issue isn’t really about the consumers, it’s about the suppliers. They don’t make ketone strips prescription only. They don’t require proof of being diabetic to buy them. There isn’t enough education for these people using them for ketosis diets to know that they’re life saving equipment. The people producing the product are not supplying enough to meet this new demand.

So if they’re available, who am I to say who can use them and who can’t?
Yes, they’re in the diabetes section or behind the counter. Yes, these people know they’re for diabetics. But as I find time and time again, people hear diabetes and they don’t think of life endangerment. They think of obesity, food and exercise (which of course is not how t2 works at all, otherwise there would be far more t2s).

Hey, they’re trying to lose weight too, so it’s okay for them to buy it!
Or at least that’s the thought pattern.

I guess the issue is a lack of education, of both the consumers and the suppliers. The consumers don’t know what they’re buying, and the suppliers don’t know they have a new market. Plus the t1s they are exposed to are on these diets themselves, so of course they encourage it.

That calmed me down a little. But why am I still annoyed?

It’s really simple. I’m jealous, and it’s a personal affront. Sometimes when these things happen, I think it's okay to have a bit of a whinge.

They don’t have to check ketones. They don’t have to worry about ketoacidosis. They don’t have to worry about blood sugar checks. They don’t have to worry about insulin injections. They don’t have to worry about trying to buy ketone strips in an emergency and not finding any at the chemist.

But I do.

I have calloused, spotty fingers from testing 10+ times a day for over six years. I have constant expenses for supplies. I have scar tissue and markings and pockets of collected fat tissue from injections and pump cannulas going into my stomach and sides again and again.

I have no choice, but they do. They don’t have to do this. Sure, go ahead and do your fad diet, I don’t care. I’m not saying weight loss is easy, or no big deal. It’s hard and people try a lot of options to achieve a goal- their health.  It’s not really their fault because they don’t know. It’s on the suppliers to either educate, or supply more to meet their new market.

Yes, I am jealous that something essential for me is a luxury gadget for someone else, and it sucks. 

But now the whinge is done it's time to go and educate the suppliers. To sit back, moan, and do nothing about it is redundant. Education creates new ideas, ideas create action, and action creates change. 



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