T1 Talk: Managing the Unmanageable

Welcome back to T1 Talk, a series of conversations between myself and Bec of Sweet and Sour Diabetes. We’ve started these conversations with the aim of highlighting how type 1 diabetes impacts two people of a similar age, who were diagnosed at slightly different stages of life. You can learn more about us in our first post here.

This T1 Talk is titled Managing the Unmanageable, and tackles the more technical side of management – from diabetes healthcare professionals to pens, pumps, fingersticks and CGMs. There are two parts to this T1 Talk. The first part is here, and the second part follows over on Bec’s blog at Sweet and Sour Diabetes.

The Australian health system is split into public healthcare and private healthcare. What do you use and why?

Frank: I began seeing a diabetes educator privately last year because I needed someone who had more time for me. The public system pushed me towards self management as soon as I was able, and diabetes education is something I genuinely missed for a few years there in the middle. I wanted someone consistent, someone who I could get to know and who I was able to contact inbetween appointments. I didn’t feel like the diabetes education I received in the hospital was personalised to my needs towards the end.

I see my allied healthcare professionals privately too, simply because it’s more convenient than going to the hospital.

I still see the endocrinologist publicly at the hospital. I feel like the endo is more strictly business. She refers me for all of my important check ups, reviews my hba1c and other pathology reports. I only tend to flag the more “medical” concerns with her. I’m happy seeing my endo publicly, and I don’t feel I could justify the cost of going private based on my experience here.

Bec: Your relationship with your CDE sounds brilliant!

When it comes to health system, I’ve sampled most of it. Currently my diabetes management primarily falls on two people, both private practitioners. My private endocrinologist is basically a whole healthcare team in one. She manages everything a diabetes educator would, as well as her usual endo role. This suits me really well and I feel very well supported in the private system. However, this was hard for me. I strongly believe in public health care being the best quality care. I believe you shouldn’t be able to pay more for better health care, it should just be a given. Unfortunately, the public system (whilst amazing as an early teen) was not the best fit for me as an adult. I see my allied health professionals in the public system, and everyone else privately.

Frank: Wow, the all in one sounds awesome. It sounds similar to endos I’ve read about in American blogs. It does sound expensive, though. 

Bec: It’s not too bad price wise considering it’s only once every 3 months. She’s very supportive by helping out between appointments via email, but I often feel guilty for asking for help when I’m not paying for it.

Describe the relationship you have with your Diabetes Educator and/or endocrinologist.

Frank: I see my diabetes educator once every three months. I’m pretty proactive with my management, so at the moment it’s more than enough. I’ve got her card and I know I’m welcome to call or email inbetween appointments if need be, which is comforting. It’s so good to have someone who dedicates that whole hour to you. She lets me steer the conversation, and I don’t feel pressured into anything I don’t agree with. I love that my educator also explores things like how I feel with my current level of management, or how I handle my diabetes around others. The price I pay is absolutely worth it.

Bec: I’ve always thought your educator sounded amazing. I remember mine at the kids hospital were brilliant. She sounds like she takes a real interest in your health overall, rather than focusing on just one part of diabetes.

My endocrinologist is quite business like and direct, but I like that about her. She understands my approach to my t1 and supports that, but she also tells me when to dial it back and give myself credit for what I AM doing for my management. She’s very contactable outside of the quarterly appointments via email which is very helpful for my management. I find that I’m not as self sufficient as you are Frank, and I need a bit of help working out what to do with my insulin rates. I think this might be because you’re not very self sufficient in the paediatric setting. I understand how everything works but still feel some hesitation making my own rate changes without confirming it with an endo. Plus, with work and uni and constant fluctuations in my sugars I need a helping hand to sort through the mess. So just like your educator, my endo is certainly worth paying for. I just don’t have the brain space to do it alone.

Frank: That’s fantastic. We’re under all this pressure as type 1s to constantly manage well, that along the way I think we lose sight of what an achievement this is in itself. So, I think it’s great that your endo gives you credit where it’s due. Basal rates are really tricky to work out, and obviously you need to allow time for them to kick in and sometimes it takes a lot of trial and error before you get them right. If you feel more comfortable making basal changes under the guidance of your endo, then I say good for you. I’m glad you feel supported in it.

What would you change about the system of healthcare in Australia?

Frank: Stop cutting resources in diabetes clinics! Stop pushing patients away! The number of patients in my diabetes clinic keeps growing, but over the years it seems the resources continue to be stretched thin. The wait time to see a diabetes educator is at least a month, and although I’m supposed to see the endo in 9 months, it will likely be closer to a year. Once upon a time, diabetes clinic was the only resource I relied upon to manage my diabetes. I couldn’t imagine where I would be today if I hadn’t diversified my investment chips into peers, websites, books, social media, private education and allied health professionals.

Bec: Excellent points there. So you see your endo less than once every 3 months? That makes sense considering the role your educator plays in your management. I agree that adult care needs to improve, which is something transition services such as Trapeze (a company I work for) is working toward. I left public health care because it just didn’t fit me or my needs.

The thing I would change is the idea that CGM is a luxury. It certainly is not. I can’t feel my hypos very much, and I tend to drop in my sleep. How anyone can consider an alarm system that keeps you alive a luxury is beyond me. Yes, it’s subsidised for those under 21 upon recommendation from their endo, but t1 has no age cut off. I’ve spent a lot of time contacting politicians to make a change. Just last week I sent a letter to my local member to bring the issue up again. Probably not effective, but at least I’m trying to do something about it.

Frank: I feel so guilty to whinge about CGM considering how lucky we are here in Australia, but yes I wish they were more accessible to me. While I’m so happy for the kids who will get one subsidised, I feel like our government has simply forgotten about the rest of us with type 1. I worry so much about going hypo unaware. I go through tonnes of test strips. I usually set an alarm midway through the night, just to make sure things are sitting steady. Good on you for doing something about it, I still haven’t gotten around to contacting my local MP.

Head on over to Bec’s blog at Sweet and Sour Diabetes to read the second part of this T1 Talk. We delve into pens versus pumps, fingersticks versus CGMs, and the challenges of making changes in our management. Catch you there!

Cheers to Two Years!

*blows shortbread crumbs off the keyboard*

Happy New Year!

I can’t help but feel like saying “WE MADE IT!”

We made it to the finish line of 2016, with a New Year and the promise of a fresh start ahead of us.

I hope you had a wonderful festive season, and hopefully some time out to recharge the batteries. With the reality of heading back to work tomorrow starting to sink in, the festive season is well and truly over for another year.

This little corner of the internet also happened to mark its second birthday last week. It’s been two years since I began blogging here at Type 1 Writes, and since I first entered into the fray that is the Diabetes Online Community.

As often as I am thanked for my blog and it’s helpfulness, I’ve needed this space just as much as you. This space started out as the pet project of a university graduate, and I never really knew what would become of it.

I struggled with managing a very demanding and isolating condition that is type 1 diabetes. I wasn’t satisfied with the state of my management, but I lacked the knowledge and motivation to do all of the things that added up half decent blood sugar levels.

The past two years have brought a wave of peer support, knowledge, learning, inspiration, empowerment and “me toos.” Although diabetes is an impossible condition to manage at the best of times, I feel I have a far better idea of how to tame it than I once did.

I really owe it to all of you.

The supportive comments that have come from my blog posts. The conversations that happen on Twitter. The support from people on my own Facebook page who I didn’t think would care less about diabetes. The e-mails that arrive from the contact page on my blog. Your articles and blog posts that provide me with insights and inspiration to apply to my own diabetes management. To those of you who are kind enough to check in when my blog is quiet. To my family at home who I couldn’t have done this, and diabetes, without.

2 years, 313 posts, 1,110 comments, 5,000 odd tweets, 100 or so OzDOC chats, and thousands of coffees later, I can’t thank you enough for the past two years.

Having diabetes absolutely sucks, but you guys make it suck just a little bit less.

Scruffy and I wish you nothing but the best for 2017. Make it a good one, friends.

(P.S. Scruffy, I’m still waiting for that guest post you were going to write for me months ago…)

Cheers to two years!

 – Frank

Is There Room For More Voices in the DOC?

Wednesday’s #dsma Twitter chat discussed the issue of inclusiveness in the Diabetes Online Community, inspired by my hour of the World Diabetes Day chat last month.

As I caught up on Wednesday’s #dsma chat, I was surprised at how different the response was compared to the hour of identical questions I hosted on World Diabetes Day. While World Diabetes Day highlighted alienation by type, access, technology and opinion, Wednesday’s chat went into feelings of alienation by things such as race, religion and sexuality. I felt that in Wednesday’s chat, I saw more people actually stand up and say that they did not feel included in the DOC. It definitely surprised me.

When I think about the importance of diversity in the DOC, I think the answer is simple. If we were all the same, the DOC would be boring and we wouldn’t hang around so much! If we all agreed on everything, we wouldn’t feel stimulated or challenged to think beyond our own needs and concerns. For me personally, connecting with organisations like T1International has really opened my eyes to more pressing issues of access in less fortunate areas of the world.

When asked if the DOC was inclusive of different voices and opinions, there were two very good points that resonated with me.

Firstly, the DOC is heavily weighted by those with privilege. Those who have access to the very best tools available to manage their diabetes. Private care, Continuous Glucose Monitors, Insulin Pumps…the list goes on. Count me guilty. The latest tech and gadgets receive a great deal of attention and enthusiasm online, and it’s easy to see why those without would certainly feel left out. I always lament the sad fact that the mostly privileged DOC is not representative of the diabetes population. There’s all these exciting developments and advancements in diabetes care, and yet how many people will be able to get their hands on it? I suspect those facing basic access issues would hardly have the ability to Tweet or blog about it, but I would personally love to see more of these stories brought to light. I do applaud T1International for giving these groups a voice.

The second point raised was the heavy skew of type 1 voices in the DOC. Many questioned whether type 2s felt alienated because of stigma…you know, diet and exercise shaming. Some suggested raising up the type 2 voices that are heard, and fighting or not contributing to stigma. I no longer feel the urge to get angry when I see a politically incorrect statement about type 1 diabetes, because I realise I probably end up shaming or stigmatising someone with type 2. Nobody asks to get diabetes, let alone be told why they got it. We’re all in this together, and we need to raise each other up.

Cherise, operator of the #dsma community, stated that her goal has always been to support everyone touched by diabetes. Judging by the strength of the #dsma community, she’s clearly doing something right. I would hope that I am inclusive. But, naturally, we all have different goals, needs and areas of interest. So where does that put someone who is sitting in a minority area of interest?

I think of my friend Laura (@KidFears99) on Twitter. A few months ago when everyone was talking about the right to their choice of insulin pump (aka #DiabetesAccessMatters), she felt that nobody else cared about the rising cost of insulin in the US. She was passionate about her cause. It mattered to her. So she kept talking about it. She went to the media with her story. Today, she has drummed up a great deal more interest in this issue that there was several months ago.

So if you do feel in the minority, I encourage you to speak up. I guarantee that there is at least one more person out there who will be interested in what you have to say. I don’t really think it matters whether you have the support of 1 person, or 1000. If its important to you, then it’s worth sharing. I will always be willing to listen.

The DOC constantly challenges my thinking, and that tells me that we must be doing something right. We just need to make sure that we keep making room for more. There will always be room for more voices.