Dealing with Diabetes

The Occlusion That Triggered a Burnout

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Two weeks ago, I made my first venture over to the right side of my stomach. I had worked my way across the left side of my stomach during my first month on the insulin pump. Infusion sites only need to be changed every three days compared to injections, and I was pretty damn pleased at the thought that the right side of my stomach had gotten a break for a whole month. So I was pretty surprised to discover bruising underneath that very infusion site two days later in the shower.

I knew that I had to rip it out straight away. As I ripped it out, it began to bleed. As I watched the bleeding and nasty purple bruising on my stomach, I really couldn’t believe it. I hadn’t touched that side of my stomach for a whole month, and I really had no explanation for it. I was pissed off, and wondered to myself where I had gone wrong.

As I went about replacing the infusion site, I wasted two insertion devices in the process. The first site came a little unstuck from my stomach as I pulled the insertion device away from my body. Not wanting to risk a failed site, I pulled it away from my body completely and started over. The second one was also a failure. The details are a little hazy, but I remember seeing a bent needle as I pulled the insertion device away from the site. By the time the third one was in, I had wasted close to an hour of my afternoon dealing with it. In addition to being angry, I was now very much emotional as well.

Yet, it was only about to get worse.

I decided it was as good a night as ever to turn down one of my favourite dinners (stuffed eggplants) in favour of testing my evening basal rates. Ironically, I was also moderating an OzDOC chat that night on diabetes and emotional health.

My levels were in range prior to kicking off the chat. I was confident my basal rate was close enough, although I did suspect that my levels might drop a little that night. So it was to my great surprise to find that towards the end of the hour, my BGLs had hit 10mmol with an upward trend arrow. I don’t know what possessed me to check my stomach, but I did. And I discovered my very first occlusion in my insulin pump line.


This one didn’t bleed a little. It bled and bled and bled. Words cannot describe how devastated I felt that night as I lay there on the couch, applying tissues on my stomach and waiting for the bleeding to subside. The two nasty purple bruises that were left on my stomach in the days that followed were a lasting reminder of my diabetes and of how long I’d had it. I had never felt so failed by my body in my life.

I stood for at least five minutes in front of my wardrobe, deliberating whether or not to replace the site. After the day which I’d had, I really didn’t feel like dealing with another site change. After the events that had transpired, I wouldn’t even be able to go to sleep with confidence that the site would stay put. I was seriously considering injecting Lantus and taking a break from the pump for a day or so.

I eventually gathered the courage to replace the site, opting for the outer edges of my stomach. I’ve since decided that the centre circle of my stomach needs an indefinite break before it’s ready to handle three day long infusion sites. I’ve visited my doctor, and I’m applying bruise cream to my stomach in the hopes that it will heal some of that stomach tissue.

I now make sure to look at my infusion sites every day. In the shower, when I’m getting dressed and before bed. I always make sure that the skin underneath the site looks clean and free from dark marks and bruising, because I want to minimise the chances of this ever happening again.

It was the occlusion that triggered a really rough period of diabetes burnout over this past week and a bit.

Six Hours

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Six hours on an empty stomach, on a quiet Sunday afternoon at home sure does give you a lot of time to think.

I’ve been so intensely focussed on testing my basal rates over the weekend. Making sure that the rate of background insulin my pump delivers is keeping my blood glucose levels steady through a six hour window. To do this, I can’t have any bolus insulin active in my system, meaning no food for six hours.

I was laying in front of the television at lunch time yesterday, trying not to think about my growling stomach. I had my FreeStyle Libre within arms reach, scanning every half hour or so, watching the movement of my blood glucose levels.

Every time I saw a trend arrow, I started to obsess. Am I too stressed? Have I been on my feet too much this morning? Does lying on the couch represent a typical day for me? Have I been less active than I normally would have? Was there too much fat in my breakfast this morning? Am I feeling the cold today?

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I tried to lay there and focus on the television, and not obsess over my actions that day. Resisting the urge to pull out my pump and tweak the basal rate, instead opting to let the pump do it’s thing.

Sure enough, the trends were only small ones. By the time I scanned again, the trend arrow had shifted in another direction. However, as I was laying there yesterday, one thing became very apparent to me.

Everything affects diabetes. Absolutely everything. Even something as simple as laying on the couch can mean the difference between a lower or a higher rate of basal insulin.

We strive for perfection, and yet it’s not always realistic while we are trying to live our lives at the same time. Some days we can only do our best, and remember that diabetes does not rule our lives.

Making DOC to Real Life Connections

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Group Photo 2

One of the best things that came from Diabetes Exchange in Sydney was the opportunity to make some real life connections with members of the Diabetes Online Community. In the past year and a half, online peer support has changed the way that I look at and manage my own diabetes.

More specifically, I’ve been drawn to a group called the Oz Diabetes Online Community, where I participate in diabetes support chats on Twitter every Tuesday night. The individuals in this particular group are the ones that I feel I can relate to the most. Theirs were among the first blogs I read. Their Tweets are the first that grab my attention in the morning. They live in the same country as I do, and we likely share a lot of similarities (and differences) about life with diabetes. The chance to meet some of these folks was a dream come true.

Mind you, I still can’t believe that this happened to me. I’m not an athlete or a celebrity, nor did I know anyone of influence in the room. I’m just an ordinary guy who happens to have diabetes. I kept waiting for the event to be cancelled, or to be scheduled on another day where I wouldn’t be able to attend. I was half expecting to be told that I didn’t have enough blog readers, or that I would be too expensive to fly over from Western Australia.

Going into this event, I definitely felt a little bit like the odd one out. I lived on the opposite side of the country, and I was probably the newest of all the bloggers there. I hadn’t met any of the others in attendance prior. I was a little nervous about whether I would fit in, and whether the other bloggers would be as nice as they seemed online.

I was so nervous on the drive to the Ovolo hotel in Woolomollo on Thursday afternoon. I wondered who would be the first person I’d meet. Would I run into Renza getting out of a taxi? Would I walk up behind Ashley at the reception desk? Would I bump into Georgie on the way to my hotel room? I wondered if I would even recognise them outside of their Twitter photo.

I was escorted up to my loft style hotel room, which was like nowhere else I had stayed in my life.


And, sadly, hardly enough time to enjoy it. I was nervously counting down the minutes until 4 o’clock. When I knew I couldn’t put it off any longer, I nervously proceeded to make my way down to the lobby for event registration. I instantly recognised Georgie, Kim and Ashley exiting the elevator on the opposite side of mine, and the nerves were instantly relieved.

It was super weird at first. Even though I knew these guys online, I didn’t know them, really. It was super weird as we sat down, and part of me wasn’t sure what I was going to say to them. Hey, great blog post last week? I’m glad the registration in the lobby lasted an hour, as it served as a nice ice breaker. By the end of that hour, I’d had a decent chat with Ashley, Melinda, and PR ladies Laura and Hannah, and I’d had a few words with Georgie and Kim as well.

It was great to chat with Drew and Matt, who I did not know of prior to this event, over breakfast on Friday. I was honestly in awe of all of Melinda’s life experience with diabetes, which absolutely shines through all of her activity online. I had a nice chat with Kim on the boat, as well as a few silly photos. Renza gave me a few words of encouragement about my upcoming pump day on the way upstairs to pack my bags on Friday morning. Georgie and I counted down together as we inserted the Libre sensors on our arms. I had fun Tweeting with Ashley during Friday’s proceedings, despite the fact that we were sitting next to each other. Although I didn’t get a chance to have a chat with Tanya, I was inspired by the story she shared about managing diabetes and achieving great things in a way that worked for her.

Water Taxi 1

I guess my biggest takeaway is that I no longer feel like such a stranger around these guys. While some of the bloggers aren’t in the same circles as myself online, I do feel closer to some of the others. I feel like I do Tweet these guys more often. I have now replaced most of their “online” voices in my head with their real ones. And some of them are now Facebook friends, as well.

I feel so privileged to have met these guys, and I’ll remember our time together fondly. Here are the list of attendees and their blogs:

Ashley of BitterSweet Diagnosis

Melinda of Twice Diabetes

Georgie of Lazy Pancreas

Kim of 1 Type 1

Renza of Diabetogenic

Tanya of The Leveled Life

Drew of Drew’s Daily Dose

Matt of Afrezza Down Under

Group Photo 3

Disclosure: Abbott Diabetes Care paid for my travel and accommodation expenses to Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no expectation that I would subsequently blog, and all opinions expressed are my own.

Troubleshooting

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A few days ago, I had settled into a certain level of comfort with my insulin pump settings. After a week of relentless hypos, I was close to nailing my basal rates at work. I successfully rocked a temp basal rate on Saturday while I was in the kitchen cooking lunch, and on Sunday when I was gardening.

On Sunday evening, I went out for dinner. I thought I had been fairly sensible – two slices of pizza for entree and a steak with steamed veggies on the side for main. I was bolusing insulin under the table as I was going – thank you for your convenience, Mr. Pump. I’d estimated 30g for the pizza and another 10g for the veggies on the main dish. All was good.

When I returned home, I was 14.2. No problem. I entered my reading into the pump, and administered the recommended correction bolus.

By the time I was ready for bed, my glucose had jumped to 18.8 (insert your favourite swear word here!). I gave another correction bolus. It was nearing 10.30pm, and my lower overnight basal rate was about to kick in. I decided to set a +30% temporary basal rate for 2 hours to help get things moving along.

I was trying to be cautious with the use of my temporary basal rates, not wanting to overdo it and go low. The rest of my night was spent checking my blood sugar level, swearing at the result, correcting, setting another temporary basal rate and setting the alarm on my phone to wake myself in another hour to check.

After trialling an hour without a temporary basal rate, I woke up at 4am to discover my BGLs had skyrocketed. I finally decided that I could safely go to sleep with a temporary basal rate switched on for the remainder of the night.

When nothing had changed 24 hours later, I began freaking out. I’d changed a perfectly good looking site, suspecting possible insulin absorption issues because it was too high up on my stomach. I’d checked my temperature, which was a perfectly normal 37 degrees. I checked for ketones that weren’t there. Stressed? Not that I was aware of. Sick? I felt fine. Change in activity? Nothing out of the ordinary.

I was correcting with very little effect, and temporary basal rates were creeping up to very abnormal levels. In a moment of anxiety, I reached out to the Twitterverse to find out if there was anything that I could have missed.

The first one was dehydration. It has been absolutely freezing cold this week. When I think about it, I don’t think I’ve drank a lot of fluids that didn’t contain caffeine these past few days.

The second one is that perhaps I’m coming down with a virus, and my glucose levels are responding before I am.

The final one was lack of physical activity, but I ruled that one out because my job is quite an active one. 

Today, not a lot has changed symptoms-wise. But I’m confident that a 30% temporary basal rate across my entire day is enough to keep me somewhat stable. I’m trying to drink lots of water, and pre bolus as much as possible to avoid blood sugar levels from going out of control after meals. I’ve talked it over with my diabetes educator over the phone, and I feel somewhat reassured in my thought processes.

I hope I’m not going to have to start all over again with basal testing. But for the time being, I’ll just have to wait it out and see what happens…

If only all the problems of the world could be solved with coffee.


Diabetes Hacks

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It’s Day 5 of Diabetes Blog Week, and today’s prompt is titled “Tips and Tricks.” Inspired by an OzDOC chat a few weeks ago, I thought I’d go with “Diabetes Hacks.” Anyhow, here is 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 used to live by the motto that “nothing will ever happen to me.” Historically, I’ve packed as lightly as possible when heading out with diabetes. My meter has often been replaced with a blind guess. A wallet will subsidise hypo treatments on the road. Meanwhile, my Medic Alert bracelet spends hardly any time on my hand.

The biggest problem for me, is trying to figure out where to put it all. I hate carrying crap around, especially when there’s a good chance I won’t even need it. I hate bulky things in my pockets, weighing my shorts down. I can’t stand overstuffed jeans, or having things in my hands. The same policy applies to anything not related to diabetes.

Slowly but surely, I do feel that I am becoming more organised. I am starting to think more long term, and the possibility of the unexpected happening. In fact, I’m not even sure that I recognise myself anymore!

During insulin pump training on Tuesday (posts to come next week), my diabetes educator raised the idea of having a backup plan. Coming off basic injections, I have been quite worried about being so reliant on one device to do everything for me. I’ve been mulling over scenarios in my head where I might have to inject Lantus and go back to Multiple Daily Injections temporarily.

Traditional me would have nodded and shrugged the idea off. Instead, I reached over to my bag and pulled out my contingency pack in front of Gwen. I had a contingency pack after one day with an insulin pump! It was one of my most proud, and so-unlike-me diabetes moments. It’s nice to know that backup is there.

My favourite hack, as Ashley witnessed first hand last week, are my test strip containers. Taking the time to count out skittles in the midst of a hypo has been frustrating over the years. I often lose count of whether I’ve eaten 5 skittles or 7, and am left guessing. Other times, I am just desperate to cram the sugar into my mouth.


Nowadays, I have collections of empty test strip containers ready to go on my desk. I fill them with 10 skittles each, and I know that’s 11g of carbs per container. They’re super easy to carry around with me when I’m heading out, and saves me the pain of bringing the whole bag with me. I can stash them in my desk drawer, my bag and in my locker at work. If I’m struck down by a hypo, I can easily just shove a whole container into my mouth without even thinking about it. They also worked nicely as sharps containers in Sydney last week!

My favourite item of clothing, without a doubt, is my Lost Highway jacket. It’s got plenty of pockets where I can easily cloak my insulin pens, meter, hypo containers, as well as all of my non-diabetes stuff. Even during the Summer, I’m guilty of brining it along to a party and holding it in my hand the whole time! Sadly, it’s in the wash today, so this old Instagram photo will have to do.

https://www.instagram.com/p/80lsx1A_bu/?taken-by=franksita

 

To read other posts related to today’s prompt, click here.