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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…

 

Day two of #Dx2Sydney is about to kick off. Yesterday was about getting to know just who is in the room, as well as getting an idea about the product and yes, we all did get to trial it last night and most of us are now sporting little white discs on our arms. I am slowly, but surely, making my transition to droid with three medical devices stuck on my body.

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The droid you’ve been looking for…

Some of us have been commenting on our SoMe feeds already about the event, so I thought I’d quickly put together a list of who is here so you can follow along. There are eight Australian bloggers here and I’d encourage you to support our local talent and have a read (not only about this event – which they may or may not write about).

Matt at Afrezza Down Under

Ashley at Bittersweet Diagnosis

Drew at Drew’s Daily Dose

Frank at Type 1 Writes

Georgie at My Lazy Pancreas

Kim at 1 Type 1

Melinda at Twice Diabetes

Tanya at The Leveled Life

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There have been a fair bit of tweeting throughout the couple of days, so you might want to jump on Twitter and check out #DX2Sydney.

Also, lots of people are asking about launch details (including costs) of the Freestyle Libre. The Abbott website has all the information you need.

DISCLOSURES

As explained in yesterday’s post, travel, accommodation, meals and transfer costs have been covered by Abbott. And all attendees have also been given two Freestyle Libre sensors and the reader. 

I may write about my thoughts of using the Libre device after I’ve trialled it for a while. I might not. Abbott have no input to the words I may write. 

 I’m in Sydney for the next couple of days for the Diabetes Exchange (DX) program hosted by Abbott Diabetes Care. The event which runs over two days is part of Abbott’s global DX initiative which aims to bring together diabetes bloggers from all over the world. The Sydney event follows on from the initial meeting in Berlin, and next month, there will be an EU event, this time in Stockholm. (How’s your French? Google translate may be able to help you with this wrap up of the Berlin event from my dear friend Andrea.)

I am terribly excited about the Sydney event for a few reasons. Firstly, it’s all about the tech. Make no mistake, we’re here to talk about the Abbott Freestyle Libre monitoring device which (finally) received TGA approval earlier this year and will be launched into the Aussie market in the very near future. It’s exciting technology – and how clever are Abbott in bringing together a group of bloggers who may just share their experience (of both the event and the device) with others?

I am also excited because I will be surrounded by my peers – others who also live with diabetes. I will be with old friends, others that I only know in the 140-characters-or-fewer world of Twitter and others that I have never met (in real like or online) before. I am especially excited that it is an Australian event because it is always fascinating to see and hear the close-to-home perspective and just how different it can be even though we are accessing the same health system while living with same health condition. (I’m also thrilled to be in a room full of Aussies because it means I won’t spend a significant part of the day asking ‘Does that translate?’ as I try to explain something that makes absolutely no sense to anyone from Europe, the US or the UK.)

I have been very fortunate to sit around tables around the world at similar events and the power and value is not because we all agree with each other. In fact, the real magic happens when there is respectful and robust discussion where everyone is given the opportunity to safely share their experience and perspective. I so hope that is the outcome of the DX2Sydney meeting.

I am facilitating DX2Sydney, which is terrific because it means I don’t have to say much. I mainly get to listen and hear others’ thoughts. The agenda is packed full of interesting topics and there is plenty of time for tangents and questions. Well done to Abbott for bringing us all together. This is a terrific opportunity for us as bloggers, but it is also such a brilliant opportunity for Abbott to get some valuable insight into working with PWD. We have a place at this table; there is no issue with industry and PWD talking, engaging and sharing. I’m so pleased to be here to do that!

Our Aussie blogging community may be small – and this may be only the second time that a group of Aussie diabetes social media influencers have been allowed in a room at the same time (the first time being Diabetes Victoria’s innovative Diabetes SoMe Summit back in 2012), but I am so pleased that we are being given the opportunity to lend our voice to the global DX initiative.

You can follow along on Twitter at #DX2Sydney. And I’ll be linking to any blogs or commentary from the other attendees in later posts.

DISCLOSURE

DX2Sydney is being coordinated and run by Abbott Diabetes Care. The costs for me to attend the two day event (travel, accommodation, meals and transfers) have been covered by Abbott. All attendees will also receive Freestyle Libre product so we can trial the new device. 

There is no expectation that I will write about the event or my thoughts of the device. Abbott may have paid for me to attend, but they have not paid for my words on this blog, social media activity or anywhere else. I do, however, promise to try to keep myself nice and not swear. (But that could go pear-shaped any moment!)

DX2Sydney is being held in the ACDC suite of the hotel. Who said diabetes isn't rock 'n' roll?

DX2Sydney is being held in the ACDC suite of the hotel. Who said diabetes isn’t rock ‘n’ roll?

In the last week, I have had no fewer than six women contact me with the same question. All of them are about to start using a pump and they are concerned about the most important and worrying aspect of wearing a life-saving medical device. ‘Where and how do I wear my pump?‘ they have all asked.

Wearing one’s pancreas on the outside of one’s body has its challenges. There is the challenge of having to explain what the beeping, vibrating, clicking box is all about. There is the challenge of mixing the pump with door handles and anything else protruding (the pump will usually come off second best). There is the challenge of finding a delicate, inconspicuous and subtle way of removing the pump from under clothes to use it.

And, there is the challenge of where to wear the bloody thing. Pumps do nothing for the line of one’s clothing. A square, hard box is lousy for smooth, uninterrupted lines, so I usually tuck my pump into my bra.

But what about for times when one is not wearing a bra? I have found that simply popping my pump in my pocket will inevitably results in a tube tied around a door handle, a yelp (from me) and a pump failing to do what it is meant to do (i.e. deliver insulin and keep me alive).

My walking-in-the-door routine includes high heels kicked off into a corner, pencil skirt removed and bra ripped off which means that my pump is suddenly free flying. Where does the little external pancreas go without the threat of bungee-ing to the floor and hitting the cat on the head?

Today, over at ASweetLife, there is a list of innovative and terrific designers who are solving this (obviously first world, but nonetheless important) issue. Finally, there is cute, attractive and sexy underwear that provides a solution to the ‘where to wear’ question.

It doesn’t surprise me that so many people are anxious about where to wear their pump, in fact it is one of the most frequent questions from people (usually women) who are considering a pump. When giving talks about pump use, I usually stand there and ask the audience if they can see where I am wearing my pump. Most are surprised that there is absolutely no sign of it, even though I often am wearing tight-fitting clothes.

I understand why this is such an important issue for people who are thinking of starting on a pump. Suddenly having something attached to your body 24/7/365 can be quite confronting. Wanting to know that it will work with our clothes should not be dismissed as a frivolous or pointless concern. Our insulin pumps become part of our body, functioning as an organ, albeit one that we have to drive ourselves. Finding ways to accommodate our external pancreas in a way that is beautiful and comfortable is incredibly important. Thanks to the designers finding a way to do that.

Perfect start to Mother’s Day. Just need to work out how to make this happen every day!

I had a gorgeous Mother’s Day yesterday, which included, amongst other things, breakfast in bed, a big family lunch at our place and, after everyone had gone home, an afternoon nap. It was quite glorious and I felt incredibly spoilt by my little family and fortunate to be surrounded by our extended family.

So it is with some guilt that I admit that in with all the happiness and celebrations and gifts and cards and flowers that I had moments of quiet sadness – both yesterday and in the lead up to the day.

Mother’s Day for me is about celebrating my mother who is, quite simply, the best mother in all the lands. There is no doubt about that in my mind.

It is also about being a mother and thinking about how much I love that. But in there, mixed up with the loveliness of it all, I feel pain and sadness.

I feel guilty about it because I do feel so lucky. I have a daughter and she is wonderful. I am a mother and I am so grateful. But I feel that I am missing something – or someone.

In the lead up to Mother’s Day, I was talking with a friend about how I felt and she said to me ‘At least you have your beautiful girl. A lot of people would be so thrilled with that.’ And I am thrilled with my daughter – of course I am. Feeling sad about the babies I lost does not mean that I don’t celebrate what I do have.

I ache sometimes for what could have been. I feel ungrateful even writing this, because I know and try to understand how difficult it is for women who do not have children. I read the stories about how hard Mother’s Day and other occasions are for people who don’t celebrate – for whatever reason and know that it sounds like I am ignoring how lucky I am and being greedy for wanting more.

Those quiet moments of wonder don’t stop hurting. I think about the baby that would have come before my daughter, but mostly, I think of the little ones that would have come after. I think of the one I lost two years after out little girl was born and think about how different our daughter’s childhood would have been if she had a sibling so close in age to her.

And still with so much rawness, I think of the one who would have been three now and how our family would have been turned completely on its head with the arrival of a new baby only a couple of years ago and we would still be muddling through the toddler years.

I had a dream the other night of Mother’s Day morning with Aaron and our daughter, and another little child – a three year old. I couldn’t see if it was a boy or a girl, but there was a bundling little kid also jumping on the bed, helping me unwrap my gifts and bringing me my carefully made breakfast. I kept trying to reach out for the child so I could hug him or her, but I couldn’t. The little one kept wriggling just out of reach, not showing me his or her face.

img_2452I don’t understand these feelings. I don’t understand how I can move – almost in a heartbeat – from feeling like the luckiest mum in the world to feeling pain. But it happens and it especially happens on these days.

I hugged my girl very tightly yesterday. She is the one that my body decided to hold on to and keep; the one I was able to nourish and embrace and watch grow up. She is the reason I am someone’s mother on Mother’s Day. I truly do believe that she is so very much enough. But that doesn’t stop me from wondering ‘What if…?’

I have been closely watching how our US DOC friends are responding to the situation with United Healthcare insurance  limiting the choice of insulin pumps to Medtronic devices only. They have effectively removed the ability for the person with diabetes to select the pump that best works for their diabetes management (at least without a flight through – what  I imagine would be – a terribly arduous appeals process).

My knowledge of the US health system is rudimentary, but I do frequently read about how treatment choices are dictated by health insurers. This is absolutely shocking to me – the idea that my health insurer gets a say in what insulin I pump into my body, which strips I use to check my BGL or the device I use to administer insulin is terrifying.

While I am appalled at the insurer for their complete and utter lack of concern for the person living with diabetes, I am not really surprised. I have never felt that an insurer is on the side of the insured.

But I am very concerned at how Medtronic has behaved here, because despite any rhetoric, this is not the best outcome for, or in the best interest of, the person living with diabetes. For a company that has often shown they are genuinely interested in listening to the consumer, this flies in the face of any consumer-centric attitude and reeks of nothing more than greed.

The commentary from US DOC folks has been swift, consistent and damning, and I continue to read and learn with much interest as they eloquently and passionately plead the case for choice. I am, as I often am, inspired and motivated by the way the community comes together to fight the good fight.

But I am dismayed that there is a need for so much fighting. Living with diabetes is hard enough without having to battle red tape, bureaucracy and corporate hacks who are so out of touch with what living with a chronic condition is about.

And I also watch with fear, because I know that as much as we have freedom of choice in Australia (for now), we shouldn’t take it for granted. We know our insurers are always looking for ways to cut costs, increase profits and raise premiums.

We have already seen some insurers here take measures to make it harder to claim for a pump. There are stories of insurers insisting a higher level of cover for insulin pump rebates, instead of the basic hospital cover that was once the norm; longer qualifying periods have been introduced before a claim for a pump can be made; the number of years between upgrades are sneakily being increased in policies.

Whatever the change, it is clear the outcome for people with diabetes is that we are being screwed. We shouldn’t be too smug here in Australia as we watch from afar, because I fear it is just a matter of time before these sorts of measures are introduced here.

Here are some responses from the US DOC:

Kerri from Six Until Me (also. happy 11th blogaversary!)

Bennet from Your Diabetes May Vary

Kelly from Diabetesaliciousness

Round up from Diabetes Mine and this Storey

Kelly and Adam at Diatribe

Marina from The Betes Organization

Melissa for ASweetLife

Rick Phillips at Radiabetes

And finally, keep an eye on DPAC for update

#AccessMatters

#MyPumpMyChoice

#PatientsOverProfits

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