Weather the diabetes havoc-er

One of the factors not included in Diatribe’s 22 factors that influence glucose levels is the weather. Sometimes the weather plays with my diabetes management. And here’s how. Do you remember that really, really wet day we had last week? It seems like a distant memory now and I don’t think it had a name, like a storm name, but most of the country was flooded under a yellow weather warning.

When I got up that morning and look out the window I thought “Nope, I’m not walking, I don’t mind being wet and drippy but not that wet!” I was disappointed because most days I love my walk. It clears my head as I inhale clean fresh energy and exhale stress. I swing my arms vigorously and loosen up my neck and shoulders. I had missed my walk the day before due to a doctor's appointment so I was doubly disappointed.

So, with my daily constitutional off the menu, I took my “no-walk” breakfast insulin dose, which tends to be twice what I take if I am walking and off I drove the kids to school.

However, as I was dropping the teen and preteen to school the rain wasn’t that bad. So,I changed my mind (GASP)…. but how can I avoid a hypo seeing as I’ve taking all this insulin without using calories to prevent the low glucose reaction that will surely follow?

I decided to turn my background/basal insulin down to zero for one hour on my insulin pump. Yes, it was going to take an hour to take effect but it was better than a severe hypo. At least it might soften the blow.

Now, if I was on injection pens there is no way I could have avoided preventing a low without glucose.

So was I successful? Weeelll, kind of. I did have a hypo. A doosy at 2.8mmols but it didn’t feel as bad as it was and I didn’t feel like I had to consume the entire kitchen just about a dozen small jellies.

Compared to most hypos this one rebounded quite quickly and not too high. However, I did spend most of the day with glucose levels that were more elevated than my usual.

And there you have it, diabetes the spontaneity killer and weather the diabetes havoc-er.

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.

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!

Blood Glucose Darkness

I've been using a continuous glucose monitor (CGM) since November 2015 and it has made a huge difference in my diabetes management. It has narrowed the glucose swings so much and it has been a huge relief in my anxiety relating to trying to avoid hypos. And I have worn it 24/7 since I got it. Last Friday, I had an MRI on my stupid 83 year old hip (another story) and I had to take my sensor off. So I decided to go the whole weekend cgm-free. I thought it would be nice to have a break from the alarms and just see how I got on.

I felt completely blind! I had no idea what my glucose levels were between finger prick checking and it was a huge loss of information. I felt I was making decisions with my insulin without all of the information.

That evening, I went to bed with a respectable glucose 8.8 mmols/L to be woken at 3am by perspiration steaming off my body of a glucose level of 2.8 mmol/L. I tried not to consume the entire kitchen and lay across the couch willing cold air to descend on me and cool me down.

Twenty minutes later, with glucose levels at 4.8 mmols/L and probably shooting for the sky in a rebound high, I had recovered enough to go back to bed. I woke with a glucose level of 11.5 mmols/L which was lower than I expected but still too high. At least, I was spared the high alarm during the rest of the night.

I can't believe that I used to think that I was doing fine on the information provided by 7 finger prick glucose checks per day! Using a cgm has taught me so much about how to manage my diabetes, it has taught me about creating more effective insulin doses and it has given me more power over my life with type 1 diabetes.

This piece of technology is really valuable for people with type 1 diabetes. However, I do realise that it isn't something that everybody would want or can get. I believe that availability will change in the near future though as more and more health care professionals realise its value in providing information beyond HbA1c’s also.

Short Sleeves and Stares

It's summer in Ireland. But summer in Ireland means wearing a rain jacket a lot of the time or a cardi. However, the weather has warmed up enough recently and has been a bit drier to go out in short sleeves. This feels a little uncomfortable for me. Why? I wear a gadget thingy on the side of my upper arm. It looks odd and in short sleeves it’s hard to miss. Especially, when I've been wearing it for a couple of weeks when I've had to put extra tape on it to keep it stuck on and it looks a bit “ick”.

It's a continuous glucose monitor and it measures my blood glucose levels every five minutes and transmits this information to a receiver screen. This device also alarms when my glucose levels are too high or too low, giving valuable information that helps me improve my diabetes management.

When I first started wearing my CGM two years ago, I was very self conscious of it and would actually wear a cardigan to collect the kids from school just to avoid talking about it. Everybody I met commented on it.

These days, I’m less aware and forget it’s there most of the time. Until I’m walking around the grocery and I suddenly sense that someone is looking at me. Then I do become slightly more conscious of it. But it’s difficult not too because I can feel the looks.

I got into a taxi last year and the driver asked me if it was a bomb? So I’m always wondering if that’s what other people are thinking, especially going through airport security. Most people don’t say anything though. The strangers don't approach me they just look.

I can live with the looks now and I’ve worn short sleeves more that I did last year. I've gotten over how self conscious I was of it at the beginning. Because it's fricking awesome in what it does for me and my type 1 diabetes.

And maybe some day it will be the reason that another person with diabetes comes up to me and says “Hi”.

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Time to Travel with Diabetes

It’s summertime and the living is easy, fish are jumping and people are travelling, Including me! I specifically want to share my most recent travel experience by air. My stress levels ramp up a couple of notches at the thoughts of traveling through airports. Airports equal airport security and as a person with diabetes I have a lot of organising to do to make this go as smoothly as possible.

I’ve travelled quite a bit but there is always something unexpected about it and I’ve just realised that I don’t travel very often by myself. I mostly travel with my well-travelled husband and two children and that is a very different experience - divide and conquer and all that.

Last weekend, I travelled to Amsterdam to attend the DxAmsterdam bloggers event sponsored by Abbott (more on that next week - it was great though and I learned lots). I had a couple of short flights, I travelled very light and no checked bags.

I thought I had covered everything; toiletries and cosmetics were in a clear plastic bag, medicines in another clear plastic bag, laptop easy to remove, no liquids… Or so I thought. Big, big sigh!

The first short flight was easier than expected, and boy did I savour this experience. In my home airport, I declared my medical devices and walked through the metal detector. IT DIDN’T BEEP!!!! So I could keep on walking. I didn’t have to volunteer for the pat down. I didn’t have to explain that I couldn’t go through any body scanner or why some pumps can and some don’t. I got to feel like a normal traveling person!!!

I did however make up for that seamless experience in my connecting airport where I had to do security all over again because I had to change terminals. I had to do the explaining, the intimate pat down, I had forgotten to take my camera and my glucagon out of both of my bags, so they had to be searched. I had a yogurt for my breakfast which was considered fluids and over the 100ml size, so that was confiscated but at least I had other food. So, so much to think about with diabetes and airport security.

The return trip was a bit smoother but still stressful. This time the trip to the airport was with friends; all who had diabetes:-) There were about seven of us going through security together. We all got held up for a variety of different reasons but not significantly.

I approached the body scanner and told the security agent I didn’t want to go through it. She was so nice and said that it was my choice and she didn’t mind which choice I made, at all.  They did not have traditional metal detectors, so I was given the pat down search but I wasn’t taken away to a private area and it wasn’t overly intimate. I knew my bags would get flagged because they were packed very tight and the x ray machines have trouble seeing through overlaid items. But the agent had a quick look though and everything was fine. Onwards! All seven of us met up after security and it seemed we all had similar experiences and we all have similar anxiety and stress levels about it.

The next airport I did solo. Again, I had to go through airport security on my connection as I was changing terminals. This time I was ready for them. I removed a couple of additional items from my bag into a separate tray to make it easier to see through on the x ray. It did the trick. My bags went through and didn’t need to be search. This airport had both a body scanner and a metal detector so when I was directed towards the body scanner I said that I couldn’t go through it because of my CGM. I could go through the metal detector though.

This airports procedure is to call in the manager when someone opts out of the body scanner and I had to wait until he became availible. I had a very long layover so at least I didn’t have that stress.

When the manager arrived, I explained again why I was opting out and he asked if I would agree to a search. Sure! Then, he had to find two female agents to perform the pat down and swab of my pump and CGM. At this point, my bags had been abandoned at the end of the x ray machine so another agent was trying to reunite them with their owner. I could see them and him and identified myself, and the manager asked if the agent would gather them up and keep them behind the desk until we were done. I have to say even though this airport gave me the full works both times I went through the agents could not have been nicer about it. They were all so lovely!

The pat down was uneventful and I thanked everyone for being so nice and not making the experience any worse than it already was. I was almost home and I let the stress go.

My next flight is in July when I’m flying to the US with my family. Here are a couple of things that I will be doing for that trip;

Insulin Storage - when I travel to the US and I’m going for a couple of weeks I bring a flask. Yes, a thermos. And use reusable ice cubes. It works and it works brilliant! The ice cube are still a little bit frozen 24 hours later, which is usually when I get to my final destination.

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I get a new Doctor's Letter every couple of years. You never know when you are going to need this or if ever. I never needed the doctor's letter until I started travelling with an insulin pump but I always had it. It pays to have it. I always make sure that my letter clearly states what devices should NOT go through what. I have been questioned a couple of times and on this occasion I was clear that I knew that the manufacturer states that my insulin pump cannot go through x-ray and that my CGM cannot go through any body imaging scanners because of the transmitter and that this instruction comes from the manufacturer.

I always bring some extra supplies. One plus half times of supplies. Some sites recommend that you bring double of what you need but this takes up so much space. I definitely bring twice as much insulin because I once had it spoil in the heat. But the rest I just bring maybe a couple of days extra supplies.

Airport Security - Try not to stress too much about this. Know your rights, stay calm and polite (this can be a huge challenge), if you run into one of those people who makes you not want to be polite ask for that person’s manager.

This information isn’t really useful to anyone but I just thought it was considerate and worth mentioning; We usually fly with United Airlines AND they have Nutritional information on their meals!!!!

On my last trip to the US I came across Sharps boxes in the bathroom of Newark Airport!!! How cool is that?

There is loads of information on really good diabetes websites and here are a couple I found really useful;

Diabetes UK Travel Tips Good Blood Glucose Management on Long Trips from Insulin Nation Medtronic Travel Information Animas Travel information  Diabetes Ireland Travel Tips

https://www.diabetes.ie/living-with-diabetes/living-type-1/managing-diabetes/travelling/