Even The Best Laid Plans Go Awry - Insulin Pump Site Failure

I wrote a post a couple of months back about traveling through multiple airports and how I fared with my insulin pump and my cgm (continuous glucose monitor) at each one. You can read it here. It was a good practice run for our trip to the US in July. I had everything ready.

But, as the whole world knows, the best laid plans can sometimes go awry. Type 1 diabetes it is no different.

The night before our flight to America I did a set change on my pump. This means I change to a new cannula site and fill up a new insulin reservoir. I know I really shouldn't do set changes at night because of the risk of pump site failure but my mornings are usually rushed and it makes more sense for me to do it at night.

Plus I have the added security of wearing a CGM. I was definitely glad for it on this occasion.  My cgm (continuous glucose monitor) alerted me to high glucose levels so I did not wake up in DKA (Diabetic ketoacidosis) and miss my flight.

When The first alarm went off, I figured it was travel related stress. And it's not unusual for my glucose levels from dinner to linger into the night. The second time, I thought that's odd, my glucose levels have gone up. I did a second correction bolus of insulin. But when it went off a third time at 5am and my glucose levels weren't going down at all, I wasn't taking any more chances. I inserted a new pump site and did a new correction bolus of insulin and, thankfully, an hour later when it was time to get up and get out to the airport my glucose levels were coming down.

I dread to think how I would have felt if I hadn't been using my cgm. I had a pump site failure once before from a bent cannula before I my days of using a cgm. I woke with a glucose of 25!!! And I felt so sick for most of the day, even though I had figured out the problem by lunch and started using my emergency Novo pens. I can't bear to think how I would have dealt with that if it happened the morning of our flight. In Short, I don't think I would have been on my flight that day!

Thankfully, I've only had two insulin pump site failures in the seven years that I have been pumping. The most recent one could have put a real damper on my holidays if it wasn't for the cgm (continuous glucose monitor). The "what if" makes me shudder.

My Insulin Pump Dress Challenge

I don't do dresses very often, much to my husband's disappointment. I just prefer having pockets to shove stuff into and I hate when my legs are cold. But there are occasions where a dress is called for or, in the case of last Saturday night, I'm sick of looking at them in my wardrobe and never wearing them.

When you have type 1 diabetes and wear an insulin pump where to put it in your dress does present a challenge, for me anyway. I know lots of women have figured it out for themselves but I am still searching for the solution that works for me.

Over the last seven years of wearing an insulin pump, I've tried a couple of different ways to wear it but none have worked really well especially when sheer tights (also known as pantyhose) are involved.

The first thing I tried was one of those thigh support bands. My mother found it in her “magic” rubbish box (don't ask. But I suspect every Irish house has one). It was really old and it worked reasonably well. I folded it over and slipped the pump in the fold. It did slip down when I wore tights but very slowly. Then the older it got the more the elastic in it turned to dust.

This summer, I bought a new one but even though it was the largest one I could find it was so tight it cut into my leg and was extremely uncomfortable.

I knew I was going to wear a dress again last weekend so I came across really wide elastic and Jimmy-rigged a thigh band out of it. However, I only tried it out tight-less and was too jet lagged to give it any more effort.

So on the night, when I was all dressed up and heading down the hotels stairs my jimmy-riggery slid down my leg like it was a child on a slide! So, I tried to relocated the pump into my bra and without giving you way too much information there just wasn't any room in there, it was uncomfortable and it made a lump. But I was going to live with it.

Until my husband said there's a Tesco near here, let's just pop in and see if we can find something that might work. I was thinking that one of those arm bands that joggers wear to store their phones might work and it did. It was comfortable but I still felt it was unsightly.

I'm still on the hunt because I'd prefer a thigh solution and I would love some suggestions with photos and links if possible.

Begin!

Weight and W-Exercise Woes

I'm sorry, I couldn't resist the alliteration. Over that last number of years, I’ve put on weight!!! I’m not overweight… Yet! I don’t feel overweight but my clothes are tight and I feel frumpy.

I’m frustrated because I’m eating less and less, still fairly active but I’m still gaining weight. I’ve cut down of a lot of my carbs. I’m not willing to go carb free. I exercise a bit – I know I could do more but there are things that I have to do during my day and there are things on the “could-do-unicorn-list”.

The weight loss principle might sound easy, and simple; eat less and move more.  But in reality it’s not. And for people with diabetes who use insulin, even more so.

“How We Burn Fat HOWSTUFFWORKS.COM

When we eat, the glucose and sugar harnessed from carbohydrates are the first fuel sources. The liver stores the glucose in the form of glycogen and releases it into the bloodstream as necessary to keep our body trucking along. Think of your bloodstream as an interconnected conveyor belt that takes necessary nutrients to the body parts that need them. Once that glucose runs out, fat takes over. Harnessing energy by burning fat is referred to as ketosis.”

When a person exercises they burn up the glucose in their blood first, which usually keeps you going for about 20 minutes. In a person who does not have type 1 diabetes, when that glucose is used up, the body looks for glucose else where and the liver starts to release its stores. In a person with type 1 diabetes the body goes into a hypoglycaemia (low blood glucose).

It is extremely difficult to get your body to burn fat, when your body goes into the shutdown mode of hypoglycaemia (low blood glucose).

I'm also frustrated because what I've read recently about losing weight when you have type 1 diabetes seem like the are written in a foreign language.

I feel weight management is a common problem for people who use insulin. And actually it's been proven as the biggest reason people with type 1 diabetes don’t exercise; finding the balance between insulin, glucose and all the other influences on our glucose levels.

So what's my plan of action. Well, for now, my plan is to keep up with the research and try to find more ways to move while getting all the other stuff done.

I might come up with a better plan but this is all I have left to give for now.

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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Social Media & Information Blindness

I'm beginning to feel like I am becoming blind to information if it's not being blasted at me on social media. If it's not a flashy click bait image. And I think it's making my brain die slowly.

Last week, my husband told me, (and I heard him tell me!!!, not the nod and yes response), that our broccoli in the garden was ready for picking and we shouldn't buy any for a number of weeks. Shortly after being told this, like an hour, I was doing the shopping and saw that broccoli was half price. What a bargain, I thought and bought it. What happened to my brain? Where did that piece of information go??

Is it that I'm so used to having instant information and that information is so easy to retrieve at any time on any device that my brain has forgotten how to retain information?

Ireland in the 80's it was so easy to inform people and be informed. We only had two tv channels (rural Ireland that is - No Sky channel for us), two national radio stations and maybe one weekly local newspaper, we did have a couple of daily national broadsheets too. this meant was it was extremely difficult to be unaware of anything newsworthy and if you needed to get a public information message to the people the telly and radio were both sure things.

These days though it’s extremely difficult to reach out to people with information. Unless, of course, you spend a large fortune in advertising and then there are still people who are unreachable.

When something changes in the diabetes health service how do we let people know?

In the last few years there have been at least three major changes that affect people with diabetes in Ireland. This is just off the top of my head.

1. In 2014, the HSE rule which prevented people with diabetes from holding both a medical card and a Long Term Illness book was changed to allow it. This meant that thousands of people with diabetes had to be informed that they now needed to apply for the LTI and should not be paying a prescription charge for the diabetes supplies and medications. I’m still coming across people in the diabetes online community who haven’t been informed of this!!!
2. In April 2016, Restrictions were placed on blood glucose meter test strips for people who do NOT use insulin. See here.
3. Most recently, April 2017, the change in the sugar content of Lucozade in both UK and Ireland. Every diabetes organisation and group carried this news and it even made it into mainstream media in both countries. There were posters in diabetes clinics (however, we are all looking down at our phones) all over the country. And there are still people who have not received this information, even though they are actively engaging in social media for their diabetes information. There are also people living in this world who even if you put the information right under their noses they still won't see it. And given my broccoli evidence above this could be me!?! Aaaahhh!

This makes me hugely worried for the all of those people with diabetes who do not engage online for diabetes information. We tend to forget that a very large portion of the diabetes community is not engaged online at all. We can't rely on the diabetes medical teams to reach every single person who attends their clinics with new information - it's just not feasible or even possible. Someone will always slip through.

I think this is why offline diabetes peer support can play a huge role. We can help make sure noone falls through!

Diabetes Cured- What I'd Do First

I don’t know how long it took me to realise after my diagnosis of type 1 diabetes that what people were telling me about the cure being found in five years was total tripe! But I did! Not only that but I actually gave up all hope of it. Not in a bad way, I just got on living my life with diabetes and tried new treatments and didn’t spend much time thinking about a cure. That is until I heard Aaron Kowalski speak at the Friends for Life UK conference in 2014. This talk was the most EXCITING and positive that I attended at this conference and I came away with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is probably more than 5 years away but it's close.

By the way, there is a Friends for Life UK conference happening this October and I believe there are less than 100 tickets left which can be booked here.  Find out more from their Facebook page.

Anyway, back to a diabetes cure and what if there was, some day, a cure? What would I do first?

I’ve struggled with an answer to this because there are so many things I could do, like eat a whole chocolate cake in one day but I feel like I really wouldn't truly feel happy after the first slice. but what would I do first and most enjoy?

Then it came to me in a dream a couple of weeks ago and I remembered to write it down. I was on a very long, leisurely and invigorating walk. It was somewhere beautiful like the Burren, the view was spectacular. I was carefree and felt weightless. I was not one bit worried about my glucose levels at all. I didn't have my glucose meter or supply of glucose with me - my rucksack so light. It was a good dream! It was a dream that made me feel happy when I woke up.

It was a dream where I didn't feel lost if I woke up tomorrow morning and my type 1 diabetes was gone. I've been doing diabetes over half of my life and a lot of what I do is habit. I do glucose checks without thinking. Not only that but my blogging, advocating, reviewing educational material for pharma companies & event organising takes up so much of my life and I love doing it. So what would do instead? I suppose the answer is anything. And whatever I wanted.

Now I was on a roll and I thought about what it would be like to eat when I was hungry I may even enjoy food again. Be enthusiastic about delicious food instead of seeing meals as math problems.

Or What would it be like to go to the beach and not worry about sand getting into my medical devices or trying to keep test strips and insulin cool? What would it be like to go through airport security like a person without diabetes-oh wait that actually happened :-) see here. What would it be like just do something spontaneous?

What would it be like to have all that space in my brain that's currently occupied by diabetes related decisions?

What would it feel like to not know what my glucose so levels were every minute of the day, but still know that they were normal???

Well now I've opened the can of worms I can't seem to stop.