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It’s day four of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise.  Here are the links to today’s posts.

 

Today’s prompt: May is Mental Health Month (in the US) so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

One of the things I’ve found about living with diabetes is that the way I respond to certain situations is inconsistent. Some days, I’ll look at a rollercoaster CGM trace, shrug my shoulders and think ‘That’s diabetes!’ and move on. Other times, I’ll look at a similar rollercoaster CGM trace and burst into tears, wanting to curl up in the corner under a quilt, asking ‘Why? Why? WHY?’ while someone brings me a cup of tea and Lindt orange chocolate.

There are periods when my resilience stores are high and I can manage anything thrown at me, and other days where the smallest diabetes issue sends me into a spiral of despair. The unpredictability of diabetes is matched only by my own haphazard responses.

There do seem to be some things that do get me down pretty much any time they happen. When diabetes starts to affect my family, making my health issue theirs, I get very emotional and upset. I think it is probably a combination of sadness, guilt, anger and frustration that guarantees an emotional response.

The unknown of diabetes worries and scares me. I don’t think about it most of the time – I guess that is how I cope. The fears and anxiety are neatly packaged up and hidden away, brought out only in moments of weakness – or perhaps when my resilience is low.

Earlier this month, when I was an invited speaker at the Primary Care Diabetes Society of Australia (#PCDSAus) conference, and in the same session as me was Dr Christel Hendrieckx from the Australian Centre for Behavioural Research in Diabetes. Christel was very clear that clinicians need to consider diabetes and emotional health side by side as the two are undeniably connected.

I truly think that when we break it down, we can’t separate the two. When we live with a condition that is so ever-present; that we invest so much of our time and energy into managing; that we can’t put in a box when we are feeling over it and come back to it when we feel more equipped, it’s impossible for it to not impact emotionally.

We, all too often, draw a line with the physical on one side and the emotional on the other side. That line is terribly blurred – if it’s even there at all – when it comes to diabetes.

It’s day three of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise. Here are the links to today’s posts.

 

Today’s prompt: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  

I’ve written before about difficult encounters with HCPs. There was this time and this time. And this time where it wasn’t even me who the HCPs were speaking poorly about! 

So, instead of doing that today, I’m going to talk (as in actually speak) about the the overall issue of blame and diabetes, and what can be said to address the blame game. (Apologies for the speed talking and hand waving.)

It’s day one of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise.  Make sure you check out the list for today’s posts here.

Today’s prompt: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

There are things in this world that are predictable. The early evening darkness that descends as soon as daylight saving ends each April; the desserts of warm crumble in front of the fire as soon as the weather cools down; the taste and jolt of the first coffee of the morning; or the way the puppy runs around in circles for a good five minutes once she’s let into the house when her people arrive home after a day at work.

The predictability is comforting. I like comforting. I like predictable!

Because then…then there is diabetes. Diabetes doesn’t do predictable. In fact, my diabetes laughs in the face of predictable. It seems to take great delight in waiting until the exact moment that I start to feel comfortable and confident that something is sorted and working in a certain way, and then throws me a curve ball, messing up any notion of security.

Being prepared can help though, although if I were to truly be prepared for any and all possibilities diabetes has in store, I’d never leave the house – or only ever leave carrying a suitcase and medical team. However, there are some little things that I do routinely that do make those unexpected situations a little easier to manage.

My ‘diabetes spares bag’ is always in my handbag and is probably the thing that saves me most. I wrote about how it came to the rescue a few months ago when I got to work and realized I’d forgotten to attach my insulin pump (it turns out that sixteen years of pumping is no guarantee that I’d remember to actually connect the bloody thing in the morning). Again, this is what my spares bag looks like:

And that pretty much takes care of most contingencies for a device malfunction. Empty cartridge alarm? No problem – swearing and spare insulin vial and spare cartridge can take care of that. Pump line snagged on door handle and ripped from body? Swearing and spare infusion set can take care of that. Dead battery alarm? Swearing and spare battery has that sorted (and the five cent piece in there will open the battery cap without much effort). Insulin pump left on the bathroom vanity? So much swearing and spare insulin vial and syringe will take care of that.

This little bag has helped me out of diabetes messes more times that I care to remember.

I consider having a well-connected and easy-to-reach endo an absolute essential for the unexpected. I’d never call her out of hours for something trivial, but I have reluctantly used her mobile number in case of emergencies. For example – the time I was in hospital and the A &E staff wanted to take away my pump, blood glucose meter, insulin and dignity. Or the time I passed out from a hypo and I needed her to convince the paramedics that I didn’t need to be taken to A&E – and could manage at home myself. She’s an insurance policy like to other in those moments of desperation.

To be honest, the times that I am most surprised by diabetes isn’t when it does something unexpected. The unexpected is actually normal. The times diabetes surprises me is when it is just ticking along quietly doing its thing and letting me tick along quietly and get on with things. I become most suspicious and wary, waiting for it to get back to doing its thing: being an impulsive, random, fickle pain in the pancreas.

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It’s the final day for the 2016 #DBlogWeek and I have so loved reading what people have shared about the terrific topics for this year. A huge thanks to Karen Graffeo – who not only organises the week, but sorts through heaps of suggestions (including a suggestion from a certain person who may or may not be quoted in this blog today who was, apparently, hoping for naked blogging) for the community before deciding the topics. I have been averaging five hours of sleep a night reading all the terrific posts. Big sleep-ins and afternoon naps for me this weekend!

Today’s prompt: 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 frequently write about diabetes tips and tricks. In fact, this post from a couple of years ago shared some ideas that still help me get through the myriad diabetes tasks required on any given day.

So for today, I thought I would go to someone else who might be able to provide some ideas that are different to mine.

Many of you will be familiar with The Grumpy Pumper. I’m lucky enough to have met him a few times in person and chat with him regularly and he would like me to describe him as a grumpy bastard. So to keep him happy (grumpy-happy), I will. He also also wants people to think he doesn’t smile (there may be evidence to the contrary…). He generally looks like this:

It’s possible I had consumed a lot of bubbles when this pic was taken.

But he has a very Zen quality that may come as a surprise to many. He has an attitude of not sweating the small stuff and just getting on with diabetes. He also has an uncanny ability to make lights flicker from across the other side of the world, and turn skies grey when he is arriving in a new country. (These superpowers are quite terrifying and probably could have been the subject matter for an episode of X-Files.)

Anyway, I asked him ‘What are Grumpy’s tips for dealing with diabetes crap’ and he told me he makes lists. The lists are:

The world according to Grumps.

The world according to Grumps.

I really love this attitude because it completely and utterly flies in the face of how I usually deal with things. I find that I get far too stressed about the things I can’t change or influence – both in my diabetes life and the rest of my life.

So tomorrow, I am going to go and buy a fuck it bucket and start to fill it up.

Not sure that my preferred fuck it bucket is exactly what Grumps was talking about...

Not sure that my preferred fuck it bucket is exactly what Grumps was talking about…

 

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Day 4 of #DBlogWeek and I have now read every single post from yesterday about diabetes and language and I was so interested to hear all the different perspectives. Not slowing down yet! There are still many blogs to read!

Today’s prompt: 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!

Before I was diagnosed with diabetes, I had very limited experience dealing with healthcare. I remember those days fondly because now, with my frequent flyer status firmly entrenched as Platinum, I feel that I have had far too much experience.

However, for the most part, the frequent flyer program I am part of isn’t that bad because I have been able to tailor it to my needs. I have selected a team of HCPs to meet my needs and respond to my particular quirks.

So, I am going to turn today’s topic on its head a little and write about the really positive things that I encounter in my healthcare.

  • The respect I receive at all times from the HCPs I have chosen.
  • The access I have to my team. They have kindly handed out their after hours contact numbers and are happy for me to reach out to them via email. I have never taken this for granted or abused it and only ever have contacted them when I have absolutely needed it.
  • Because I see the same HCPs every time I visit (because I pay to see them privately), there is no need to go back and start from the beginning, explaining who I am and my convoluted medical history. They know me; they know why I am there.
  • Not one of my HCPs believes that diabetes is the most important part of my life and therefore understands that there are many times I will show up to an appointment unprepared. And there is no judgement from them for this.
  • My HCP team also understand that diabetes is far more than a condition of numbers and are incredibly aware of the emotional aspects of living with diabetes. My endo and GP have been quick of the mark on several occasions suggesting I see a psychologist. For this, I am very grateful.
  • A couple of my HCPs know just how valuable peer support networks are. They ‘get’ that the people living in my computer are as critical to my diabetes wellbeing as my visits to them. Even better, I know they pass this information on to other people with diabetes they see.
  • I have an ‘indefinite referral’ to my specialists, which means I don’t need to see my GP each year asking for another referral. I also have ‘indefinite diabetes’, so this is useful!
  • Our public health system is far from perfect, but when I have had to use it, for the most part it has been brilliant.
  • Our National Diabetes Services Scheme (NDSS). I was registered the day I was diagnosed which meant that I have had access to subsidised diabetes supplies since then. It still costs money (although syringes and pen needles are free), but it is heavily subsidised.
  • And while talking about the NDSS – once registered, that’s it. There is no need to prove that I still have diabetes or that I still need access to strips or pump consumables.
  • Insulin prescriptions are easy to fill – a simple call to the pharmacy and the next day it’s waiting for me to collect for the total of around $40. And that lasts me about two and a half months.
  • Insurance in Australia is nowhere near the nightmare issue it is in the US. I choose to pay for private insurance for the simple reason that I want the full cost of my pump covered and I want to be able to choose the HCPs who treat me. My premium is not in any way affected because I have diabetes nor can I be refused cover.

Of course, there are things that could be better. Access to technology is one of those things – and by that I mean easier, more affordable access with a HCP workforce equipped and educated to work with us. We need swifter and smoother access pathways too, so that when new tech or drugs arrive on the market, they are approved for use and being utilised by PWD as soon as possible.

Outside Australia, there is much to do to improve access to basic diabetes needs.

And finally, what I believe will go a long way in improving the healthcare experience for people with diabetes is to better consult with us. We need to be part of the development process of systems, programs, services, devices. There needs to be better listening of, and engagement with us. Because only then will the people creating the healthcare experience we have to use understand what we truly need.

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It’s day 3 of Diabetes Blog Week, with thanks to Karen from Bittersweet Diabetes. And it’s hump day, so the week is half over. I am on my way to Sydney for meetings all day, but will be making sure that any transit downtime is spent finishing reading yesterday’s posts. And today’s too.

Today’s prompt:  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

I have written about language many, many times here. So today I thought I’d vlog. Happy viewing.

And here it is again: the Diabetes Australia Language Position Statement.

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It’s day 2 of Diabetes Blog Week, and the silver lining of being awake at 5am this morning was that I managed to catch up on most of the posts from day 1. This week comes from Karen Graffeo who, as she commented on my blog yesterday, I’ve not met. But we will be remedying that very shortly so I can hug her and say thanks for this. And make her buy me a coffee to help manage the sleep I’ve lost each year (and am yet to make up!) since taking part in #DBlogWeek.

Today’s prompt:  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?

Just this morning on Twitter, I was having a conversation with a few people and eventually I found myself commenting on the emotional side of diabetes. The discussion was specifically relating to someone who had recently started using an insulin pump and I made a comment about how the learning curve could be steep and to take it easy.

Someone jumped in and said that he found the learning curve to not be steep at all (which is great and also highlights the different ways different people respond to diabetes). He commented that he thought it was pretty straight forward and that most people should be able to follow some basic principles – such as timing of glucose checks and understanding what happens around food and insulin (a movable feast as far as I am concern – there is no understanding, just watching with confusion at why something worked yesterday but not today….).

This may be true. There probably are some principles that could be consistent for most people. However, this was not addressing everything I was referring to which may contribute to the gradient of that learning curve.

Matters such as insulin dosing, timing of glucose checks and counting carbs are, just like working out which buttons to push on the new device, technical. But I believe this is certainly not the only side to diabetes.

I pointed out that it was more than just the technical side to a pump start and commented as such, adding ‘emotional concerns of ‘attachment can be difficult for some, explaining in my next tweet that the term attachment was referring to being connected to something 24/7. (This is something that almost everyone I have ever spoken to has mentioned as a real barrier to starting on a pump or other wearable device – the idea of a constant, attached to the body reminder of diabetes. It was even a discussion last Friday at #DX2Sydney.)

Too often, some forget that diabetes is not about only about operational matters. The equation of ‘you eat, you take insulin to cover the food and then you are all good to go’ does not hold true. In the case of technology it is not, ‘you learn to press buttons and then you are fine.’ Just as I am much more than my diabetes, my diabetes is so much more than food, medication and devices.

When people ask me what I find the most difficult about living with diabetes, I am able to answer without hesitation. For me it is a combination of the relentlessness of the condition alongside the way in permeates all aspects of my life. It is particularly disturbing and distressing for me when it impacts my family who shouldn’t have to deal with diabetes.

I don’t have the answers or know how to fix these troubles. But I do know that there are a few things that help.

  • I have learnt to be kind to myself.
  • I have learnt to not compare myself with anyone else.
  • I have learnt that this too will pass – even the darkest diabetes moments have had light somewhere.
  • I have learnt to rely on the people around me who love and support me.
  • I have learnt that the moment that I get complacent and think I have this diabetes thing sorted, I absolutely don’t.
  • I have learnt that looking to the DOC provides me with a million things I’ve not thought of, and one of those things may work for me today.
  • I have learnt that sometimes I need to draw a line in the sand, call it a day, and admit that diabetes is winning right now. But that doesn’t mean it will tomorrow.
  • I have learnt that when all else fails, the things that make me feel best are a hug from Aaron and the kidlet, a message to one of my far away diabetes friends, a perfectly made coffee or a glass of Prosecco, and something to take my mind off diabetes.
  • I have learnt that even though I have really had some dark emotional days with diabetes, I get up and do it again tomorrow. Because that is the only option.

burn out and come back again.

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It’s day 1 of Diabetes Blog Week which means that this is a week where I will be getting little, if any sleep, as I trawl my way through hundreds of diabetes blogs from bloggers all over the world. Big thanks, as always, to the lovely Karen Graffeo (who I love today, but by the end of the week, in my sleep-deprived state, will be cursing for this initiative!) for coordinating the week and giving diabetes bloggers a chance to share their ideas and thoughts on such terrific topics.

Today’s prompt: 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?

I have now been writing a blog for over five years now. This is my 602nd post (apparently). That’s a lot of waffle about diabetes!

What’s important about diabetes awareness is not only different for each of us, but it also changes throughout time. I have had particular areas of interest at particular times, but there are certainly some issues and messages that have remained pretty consistent.

So here are a list (and links) of some of the most common messages that appear on Diabetogenic.

Use your words. Wisely. Language and diabetes is important. (And I am so excited that this is a topic for Diabetes Blog Week this year!) I have written A LOT about diabetes and language and most of those posts can be found here. 

#Access4All. And that does mean for all.

Coffee and Nutella are food groups.

My DOC friends – the ones who keep me company at 3am while low, make me laugh at any time with a random tweet or message, or reach out when concerned – are the only reason that I am mostly balanced about diabetes. Without them – and their support – I don’t know where I would be. And the same goes for the IRL friends.

Put us in the room. People with diabetes have a place at all levels, at all diabetes conferences and at discussions with all stakeholders. Our seat is at the head of the table. Make sure we get the invitation!

Diabetes experitse is shared – but different. Except when it comes to MY diabetes. Then the expertise lies squarely with me.

Diabetes is not only about numbers. It is mostly about what is going on in my head.

These are the issues that are most important to me. It was once suggested by my boss that the only time I get off my high horse is to climb on my soap box – an accusation that was made in good faith and one that I wear fondly. We all have axes to grind, issues about which we are passionate. And we need that in this as we navigate the world of diabetes.

High horse to soapbox…

 

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It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my fifth entry for the week!

I have been looking forward to this #DBlogWeek post all week because, well, food is my thing. I still believe that growing up in a family where food is considered important and dealt with in a positive, healthy way is why I have such a balanced, appreciative attitude towards the food I eat and the food I prepare for my family and friends.  And I hope that this is being instilled into the mind and heart of the kidlet of the house.Food quote italian food

I love to cook for people and our new home is the perfect entertaining space. We have a huge kitchen with heaps of prep space and a view over the garden. There is an old Aga stove which, when we get around to having a chimney sweep clean it out, will be used for all sorts of things including making bread and pizza.

On Saturday night, we had some friends over for dinner. Although I love cooking, I can be a lazy cook. I make no apologies for that, nor is it a negative trait. I made a chicken, chorizo, lemon, garlic thing that took a whole three minutes to throw together. The oven did the rest. (In a baking tray – chicken pieces, chopped chorizo, sliced lemon, bashed garlic, a bit of chicken stock in the bottom of the tray, sprinkle the top with paprika, sea salt and black pepper and shove in a 180 degree (Celsius) oven until the chicken is all golden on top and the smoky chorizo has infused it all; about 30 – 45 minutes.) I made a couple of yummy vegie-based sides and a salad using quinoa and that was it. Dessert was a crumble because it’s crumble weather.

Crunchy apples easily become soft, cinnamon-y and comforting (especial with crumble topping!)

Crunchy apples easily become soft, cinnamon-y and comforting (especial with crumble topping!)

A story of crumble...

A story of crumble…

While we’re talking crumble, I always make double or triple the quantity of topping to keep on hand in the fridge. That way, it’s always easy to throw together a simple, yet scrumptious dessert. Stewing apples or pears takes no effort and if you want to be super-lazy, open a tin of peaches or apricots or whatever floats your boat, drain some of the juice and sprinkle the crumble-topping-already-in-the-fridge over the top. Twenty minutes in the oven and you’re done. (Basic crumble recipe – rub together a cup plain flour and about 100 grams of butter; add a couple of tablespoons of brown sugar, a cup of oats, and then whatever else you have that you think will work. Add cinnamon for apple crumble, dark chocolate for pear crumble, coconut when you have rhubarb, almonds for stone fruits. Walnuts always work in crumble. Always!) According to my husband and the kidlet, crumble must come with ice-cream; I prefer King Island double (or triple) cream. Plain Greek yoghurt works well too.  

Baking biscuits and cakes is one of the most therapeutic and calming things I know how to do. Yesterday, I decided to try something new and found a recipe for Nutella drop biscuits which were just a buttermilk scone recipe with Nutella swirled through. Great concept; super easy, made the house smell like a bakery and tasted great. Plus, they can be frozen and then thawed, heated and served with some salted butter for a speedy afternoon tea.

Last night's dinner.

Last night’s dinner.

Vegetables are a big deal in our house. I love veggies and at this time of year, my favourite way to eat them is in a thick chicken stock-based soup with added barley. Again, this is a lazy cook thing because not only is it a great way of using up almost-past-eating vegies, a huge vat will do a couple of meals. (It freezes really well too.) I usually serve with some toasted crusty sourdough. Last night, however, I used up some leftover risotto and made crunchy rice croquettes to go on the side.

This morning at Stove Top (my favourite café near work).

This morning near work at Stove Top.

We eat out quite a bit. For me, the plethora of workday meetings are often more palatable if there is a coffee, a pleasant café and, possibly, a little cake (Or fairy cake!) involved. Weekends involve catching up with friends at local cafés and regular catch ups with the girls are another excuse to go to Marios.

Food is a thing of joy. It is a thing of love and it is a thing of celebration. It should taste wonderful, it should be evocative and it should not be full of angst, but I know that is not the case for a lot of people. I really do believe a big part of that is the current focus on ridiculous diets and eating plans and rules instead of enjoyment, moderation and joy.

Food quote 3At the moment, it’s a rare day when the oven is not on, baking or stewing or roasting something in its warmth, intensifying flavours and delivering, at the end of the cooking process, a wonderful hearty dish. It’s probably my favourite thing about this time of year and there is nothing better than settling in for the cold night on the couch, fire lit, with a delicious, hearty bowl of something.

I am so pleased that diabetes hasn’t stripped me of my love of food, because many people do think that those of us living with diabetes have a strict, flavourless, boring, repetitive diet. It doesn’t need to be that way.

 

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I’d add eating after cooking!

 

Friday tune – Fats Waller with ‘All that meat and no potatoes.’

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It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my fourth entry for the week!

Welcome to Diabetogenic Live! Here is my first ever (and possibly/probably last ever) vlog. I’m talking about the changes I’d like see in the Land of Diabetes (which is nowhere near as much fund as the Land of Goodies or the Land of Birthdays or the Land of Do-As-You-Please).

A few words of warning before we start:

  1. I speak really fast.
  2. And I wave my hands around a lot.
  3. I speak really fast.

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