Diabetes Sisters There's nothing like a Diabetes Conference

Last weekend, I went to the DiabetesSisters Weekend for Women conference Alexandria, Virginia. Disclaimer: Diabetes Sisters paid for my conference registration and accommodation but also gave me a contribution towards my travel costs. All they asked for in return was that I would write a blog post about the conference which I had to do anyway because I learned so much that needs to be shared;-)

There’s nothing like a diabetes conference! Seriously, diabetes conferences are like walking into a warm hug. A zone in which being a pwd is normal and your diabetes jokes get laughed at. It’s the, nobody bats an eye when there beeps sound off in the room because everybody knows what the beep is and no explanations or apologies are expected/offered/needed.

We speak the same language. You are surrounded by so many people with diabetes, there is so very much to talk about and for me, it’s very, very, very difficult to leave when the conference ends. But then once I’m home with my family it’s all good again.

How did I end up there?

Well a couple of months ago I saw that The diabetes sisters organization was offering scholarships to attend. I also knew that this was a joint conference with the Diabetes Collective DUnconfernce. I have been following both of these events/organizations since they began. I applied! I really wanted to go! I’d figure out the rest later (Shawn Sheppard :-)

Then, a month later I bought tickets for a show at home that I was dying to see for that very weekend. Either way I was going to have fun that weekend! I won the scholarship and found a new home for the tickets to a sold out show.

The idea of traveling across an ocean just to spend a weekend with people with diabetes might seem a lot crazy to some but when you know for certain that you will come away with so much more in your brain and heart it’s not.

It’s always a good sign when you register for a conference the first person you met you know. Then I met my roommate who googled how to pronounce my name :-O The loveliest room mate ever.

What was it like?

Exactly as described in my opening paragraph. Good for the heart, good for the head and good for the soul. The speakers are all people who are doing amazing things, not all had diabetes and not all were health care professionals. The information and the sharing of experiences in the room was so valuable. I will write more posts about what I learned in some of sessions in the following weeks.

However, the stand out sessions for me were;

• “Sex, Pods & Rock n Roll”, a panel discussion with lots of audience participation. The panel was made up of Diabetes Sister; Cindy Campaniello, Thriveabetes 2016 Speaker; Gary Scheiner, Karen Graffeo and Christel Marchand Aprigliano
• Anxiety, Depression and Diabetes and a second session by the same speaker, Be the CEO of your Healthcare by person with type 1 diabetes and clinical psychologist, Nicole Bereolo.
• Charting your own patient journey by Sara Wyen founder of Blood Clot Recovery Network.
• Making use of the glycemic index by Gary Scheiner. I still have so much to learn!!!
• Diabetes and Technology by Melissa Lee
• Life is sweet by Shawn Shepheard Sugar Free Shawn Show

And of course, the very best part of a diabetes conference is hanging out with the 150 other people there who had diabetes.

The Death of the Animas Insulin Pump

Last week, Johnson & Johnson Diabetes, who own Animas, announced that it was “exiting” out of the insulin pump business, effective immediately in the US and Canada. And eventually in the rest of the world. Once I read all the way down the press release to realise that it was just USA and Canada for now, I was relieved.

Then I was seriously miffed, but not completely surprised. Since the Vibe insulin pump was introduced, a number of years ago, innovation seemed to have stalled within the company. Johnson & Johnson own both Animas and the glucose meter company LifeScan/OneTouch but they didn’t even innovate between these products, not even to do what all others were doing and that was to sync products via Bluetooth or whatever internet cloud magic they choose. One might even say they really checked out of the diabetes industry a long time ago by their lack of interest.

So, what does this mean for us in Ireland? And what does this mean for me an Animas Pump user?

I have been using an Animas pump since my pumping beginnings in 2010. Then in 2014, I upgraded to the Vibe and in 2015 I added the Dexcom Continuous Glucose Monitoring System (CGM) to it. I didn't choose which insulin pump I would have, it was chosen for me, but I didn't have any complaints. In fact, it's been a great relationship!

Now I'm trying to think ahead and I realised that in the not too distant future I'm going to have to find a replacement for my insulin pump.

What are my choices in pumps? Do I actually have a choice, when the only other insulin pump my health service has a contract with is Medtronic? Yes it's probably a good pump but I don't want to be forced into it.

BUT it's not just my pump I need to consider!

This also effects my CGM device. How will my new pump interact with my current CGM, if at all? My Dexcom receiver IS my insulin pump, meaning that my glucose sensor transmits the information straight to my pump. So I need to either get a new receiver device or change CGM’s.

And then, there's my glucose meter which I was also able to upload to my insulin pump software programme which allows me to create useful graphs that help me make better decisions about my daily care. All of my information, from all of my devices is uploaded to the same place where I can see it all and it was easy!

Will I need to change both of these devices to make life easier? What will the overall software platform be that I use?

I want to be able to upload/Bluetooth/cloud sync all my devices to the same place!

I want to use whatever d*** device I like best. And I really don't like that I have to research all of this when managing diabetes is enough work already.

The Flu Vaccine what to do?

Every year, around this time, I have a conversation with myself about whether or not I should get the flu vaccine. And every year I make a different decision. Two signs of insanity right there; talking to myself and complete indecision. Whose worried? Not me! Oops, there I go again, talking to myself.  😆

Should everyone with diabetes get the flu vaccines? Well that is completely totally up to you.

So far, I've only gotten it once and that was the winter I was pregnant with my now 13 year old daughter. Since then, I maintained that if it's not broke don't fix it and I never get flu so I didn't bother.

Except last year, I had clocked up one or two flus that knocked me out for a week at a time, I decided that I was going to get it. However, when I went to my GP, I already had a cold and decided to wait but then never got around to it. I'm not sick very often so I figure the odds are still on my side. I do know as I approach 65 I will decide that I'm better off vaccinated.

This year I'm still undecided but maybe swaying towards the “I will” side.

If you are like me and still thinking will I, won't I, here's some additional information for about it

IS THE FLU VACCINE FREE FOR PEOPLE WITH DIABETES?

“Yes” and “No” because nothing is ever straight forward in our health system.

Yes, the flu vaccine itself is free to everyone in the “At Risk” groups which includes people with diabetes.

No, because if you do not have a medical card, a GP services card or a HAA card, you will have to pay for someone to jab it in.

A lot of pharmacy chains offer the flu vaccine so you do have the option to walk into one of those and have it done there and then without making an appointment. Next time you are collecting your diabetes supplies you can ask.

Pneumococcal Vaccine

It's also worth mentioning that the HSE have also launched a Pneumococcal Vaccine campaign which shouldn't be confused with the Flu vaccine. I would like to thank our guest speaker, Paul, from our last diabetes support group meeting for clarifying this information for us. WHAT IS THE Pneumococcal Vaccine?

“Pneumococcal disease is an umbrella term for a range of illnesses caused by a type of bacteria called Streptococcus pneumoniae (also known as the pneumo bug). It is a major cause of serious infection that can lead to death, particularly amongst the elderly, the very young, those who have an absent or non-functioning spleen, those with long term medical conditions*, or those with weakened immunity.” SOURCE

However, the pneumococcal vaccination is USUALLY A SINGLE VACCINATION (ie once in your lifetime dose) for those at-risk. The most at risk group are children under age 2 years and adults over 65. Once you get it once you should be protected for the rest of your life. There are exceptions to this guideline so if you would like to know more ask your GP or visit http://pneumo.ie/

The CGM Conversation is Changing

The general consensus around the availability of continuous glucose monitoring (CGM) systems in Ireland among patients and health professionals is that they are only for the select few. And while this may be somewhat true I believe that this conversation will change very soon. By the way, do not be put off by what I just said about them not being available right now; if a CGM is something you feel would make a difference in your diabetes management then go for it! Here's a post I did soon after I got mine on how I got it.

** Another by the way I would like to mention is that nobody pays me, in any way, to say what I say in my blog posts. All opinions are completely my own.

Why do I think that the conversation around CGM’s is changing?

Well three reasons and I'm starting with the most powerful but least heard reason;

1.The conversation is changing because of our (people with diabetes) voices!

More people with diabetes are using CGM's. Not many more. But more! More people with diabetes know that such devices exist. More newly diagnosed people with diabetes are hearing about it sooner and from outside the healthcare environment. More people with diabetes are talking to each other about the benefits they find using a CGM. And we are bringing all of that information back to our health care providers where they will get tired of saying “no”.

2. The conversation is changing because of the Abbott Freestyle Libre!

Since the Libre Flash glucose monitor came onto the scene, even more people with diabetes have access to their 24-hour glucose profile and a lot more front line health care professionals are seeing the benefits to their patients in having this information. Up until the launch of the Libre, only a few of us could share how much having a 24-hour glucose profile helped us manage our diabetes better. I feel we were considered exceptional patients but the reality is that we were just making better informed decisions. With more and more people having access to 24-hour glucose profile, be it via a CGM or the Libre, the exception is now becoming the rule. ;-)

3. The conversation is changing because of new research from the medical community!

Our health care providers are starting to listen to us. There are many, many more clinical trials proving that CGM improves our lives with diabetes and there are more clinical trials and studies are using CGM’s to get a more complete picture of their results.

Just last month, there were two Clinical research papers on CGM's were published; - One from JDRF states CGM use during pregnancy lead to healthier babies and healthier mothers.

- The other research paper came from the EASD in Lisbon, Portugal — “Use of real-time continuous glucose monitoring (CGM) produces significant long-term improvement in HbA1c among adult patients with type 1 diabetes, regardless of whether they use insulin pumps or multiple daily insulin injections (MDI)”

- February 2017 - Clinical Study Confirms Continuous Glucose Monitoring is as Safe and Effective as Blood Glucose Monitoring

- September 2016 - The Future of Diabetes Clinical Trials; Continuous Glucose Monitoring

- Have a look at DiaTribe's Beyond A1C video.

All the voices in favour of the benefits or CGM are growing louder and louder and coming from more than just the patient community. They cannot be ignored for very much longer. The governments of the world will see it as wise to invest in cgms and save on treating diabetes complications later. And we, the people living with diabetes, are driving that conversation. :-)

Thriveabetes; What is it? Why do I need it?

My children have been back to school for almost two full weeks now and since their first day back I've been spending a couple of hours most days planning Thriveabetes 2018. A month ago, at our fundraiser, I was asked to explain what Thriveabetes is, why people with diabetes need it and why I was asking people to give money to it.

After my nerve wrecking speech, several people commented on how they had no idea that living with diabetes was so involved and required so much work. Why I keep forgetting this when I talk about my diabetes I'll never know!

This post is to explain to people who don't have diabetes, what living with type 1 diabetes is actually like, to explain what our conference does for people with diabetes, why I'm passionate about it and why I need it.

Here's what I said;

What is Thriveabetes? And why do people with diabetes need it?

To answer these questions I have to, first, take you on a little journey. My journey.

I was diagnosed with type 1 diabetes 24 years ago as a young adult and It changed my entire life. I'd like to be able to say that living with type 1 becomes easier but it doesn't - it becomes habit.

I woke up this morning, a little groggy because my glucose alarm went off during the night telling that my levels were a little high. So I got up, checked them on my meter, worked out a correction dose of insulin, took it and went back to sleep.

Before breakfast, I checked my levels again; they were in target, so I took my insulin for my regular weekend breakfast of tea and toast also known as 40g of carbs and then ate it.

Two hours later with kids and car packed to travel across Ireland, I checked my levels again to see how close I came to getting it right. The answer was; not in target range, but close enough.

As I visited with my mother and family, I wondered what lunch was going to involve and when it was likely happen. It ended up being a sandwich at a Spar. I checked my glucose levels again. They were a little above my target, so I had to work out a correction dose of insulin plus working out an educated guess of how many grams of carbs were in this particular sandwich. Then I eat. My day, as with all other days, continued like this.

I do all of this out of habit. The numbers are very seldom perfect. But I get on with "close enough".

Now imagine, that the person with diabetes isn't you, but your child. So on top of all of those daily diabetes tasks that I do, you now have the added worry of “if I don't do this “close enough” my child is going to get sick. Again!”.

This kind of anxiety and stress goes on 24 hours a day, 7 days a week, etc. Diabetes NEVER takes time off. Ever.

This is why Thriveabetes is needed!

Thriveabetes is a place where you can relieve some of that stress and anxiety. The power and comfort of being in a room with so many people with diabetes, learning so much about managing daily life with it and knowing that every single person in that room knows diabetes like I do, lightens that load. There is no other place where we can get that.

It's a day that is organised completely by us; people with type 1 diabetes. We are all volunteers who are dedicated to and passionate about bring people with type 1 diabetes together to share what we deal with every day and to learn from world class speakers.

And that is Thriveabetes. And that is why I need it!

Parenting and Adult-ing with type 1 diabetes

When my children were younger, I was asked a couple of times about how I balance life as a mum and life as a person with type 1 diabetes. It was definitely a challenge to juggle parenting with anything but that's not news to any parent. Now that my children are older (13 & 11) I can look back on what were the tough parts and what were the “advantages” of being a mum with type 1 diabetes.

I still can't believe that my dysfunctional and broken body created two healthy and outstanding humans. I never forget how lucky I am and always remember that not every one who decides they want to be a parent gets what they want and sometimes it doesn't happen the way you thought it would.

Being a mum is a challenge and it's wonderful! I love it!!! I can say that now because I don't lose as much sleep these days as I did when they were younger. ;-) In fact, there has been an occasion or two where I'm asleep before they are.

Being a person with type 1 diabetes is a challenge too! Actually at times, it's a nightmare, completely exhausting but mostly it's a giant pain in the backside.

So what's it like to combine the challenges of being a mother AND having type 1 diabetes?

Well it's doable. And hopefully, you have adjusted to life with diabetes before motherhood is thrown in there or vice versa.

I had type 1 diabetes before I became a mother. So while diabetes didn't effect my decision to become one, it did make me hesitate and come up with a plan for how it would happen and how I/we would try to manage my pregnancy. Once, myself and my husband decided that we were in a good place to start a family, we didn’t jump straight into trying. Instead, I made an appointment with my endocrinologist to talk about how we would get my body ready for it and how my dysfunctional body was going to grow a healthy human successfully.

I've written a couple of posts over the years about what pregnancy was like with type 1 so I won't bore you again. You can find one here, one here and another here.

How does type 1 diabetes affect motherhood?

There may be an element of “the grass is greener on the other side” here. So, I could be wrong about this but I feel that mums with type 1 diabetes don't think quite the same as mums who don't. Mums who don't have diabetes seem to forget that they need to take care of themselves, as well as their baby. They seem to neglect their well being without life threatening consequences.

As a mother with type 1 diabetes, the first time I had a hypo while my baby was simultaneously screaming crying, it made me realise that diabetes has to stay high up on my list of priorities. It was well up there when I was growing this tiny human, but then I was so exhausted from it and new baby life I thought I could let it slip down the list a bit. But no, that was not to be.

Type 1 diabetes and being a mum is an all hands, whatever hands are available, condition. It means realising that when my diabetes needs attention it needs to get my attention first.

It means that family fun days out may get interrupted by low blood sugars despite elaborate planning. It means that dinner might get delayed because of low blood glucose levels.

It means that I can't answer 300 toddler questions right now because I have to treat a low. It means considering if you want or should teach your child to use a phone and dial 999. In my house, it meant that my preschoolers taught their class mates about carbohydrate while the teachers taught healthy eating. That was kind of a Mum-Pride moment though!

It means that at dinner time, we wait for everyone to sit at the table before we eat but we don’t wait for mum because she has to check her glucose levels and work out her insulin.

It means that there is always, ALWAYS, a concern that I won't get to see my children grow up. It means that I will alway feel I owe it to my children to look after my diabetes as best as I can so that it never takes any more of me from you. It means that I worry that you will be burdened with looking after me and my diabetes when if I am unable to do it as I get older.

However, I feel that being a mother with type 1 diabetes means that I have taught my children about the value of health, that being good to yourself means eating nutritious food and being active. Being a mum with T1D means that I know a little more about nutrition than the average person. In my warped sense of thinking I feel that my diabetes has made me a better parents and my children healthier.