Monthly Archives: January 2016

Scumbag Pump

My pump has been a pain in my ass lately – both figuratively and literally (shout out to one of my Purple campers from Teenage Camp for inspiring me to do a booty site).

I am unbelievably lucky to have a pump, which basically is thanks to the fact that I am still young enough to be on my parents’ health insurance and pay relatively cheap fees – am not looking forward to that 25th birthday! HOWEVER, pumps are not all sunshine and rainbows, and lately it’s started to grate on me.

I’ve decided to call it Scumbag Pump – inspired by the Scumbag Steve and Scumbag Brain meme. Examples are here if you’re not down and hip with the youths!

So why not create my own?

My pump has done numerous scumbag things the past few weeks, including:

  • Alarming loudly to alert me that my battery was low. Was this at a nice sensible time, like midday? No, it was 3 AM. 3 AM the night before school went back. Who needs sleep?
  • The site peeling off my skin one hour after my site change, because I decided to go for a walk. A WALK. Apparently that’s too hard to handle, all that strenuous dawdling to the milk bar must have been too much.
  • Beeping loudly to remind me to test in the middle of yoga class – during relaxation time, where everything is silent and dark…except for the dulcet tones of my Animas squarking through my singlet. I felt a bit werid retorting to “Turn your phone off!” with “It’s actually my pancreas!”
  • Catching on the doorknob at work, pulling me back, making me drop everything in my hands, and making me turn a swear word into a “FIRETRUCK!” so I didn’t drop the F bomb in front of 12 year olds.
  • Falling out of my bra onto my face while Purple Team tried to take the best upside down photo for Teenage Camp scavenger hunt. Don’t do a backbend with a pump, it ends badly.
  • Alarming and glowing through my shirt on a date. Nothing says “date me!” like a beeping slightly cyborg-like contraption on my chest.
  • Three sites failing on me – I may have to change, I don’t know what’s going on, but waking up with ketones of 2 is not the way to start my weekend. If I feel that crappy, I want to have had a good night beforehand!!

LOVE having a pump, I LOVE the diabetes options it gives me, and I am so grateful that I live in a country where I have access to not only insulin, but management choices. I also love Animas – I will probably never change companies, their customer service is incredible and their pumps are awesome. However, sometimes being attached to a machine 24 hours a day, 7 days a week, really takes its toll!

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It’s not your diabetes

Parents of young people with diabetes are incredible – I’m constantly in awe of how knowledgeable and dedicated they are towards their children. Whenever I meet a parent of a type 1 in person, we always get along like a house on fire as they love to chat about what their kids are achieving, and the challenges they face.

However, there’s been something that’s been grating at me lately in the online diabetes community, and it’s parents that see their child’s diabetes as something that they are entitled to dictate. Complaining about their child’s reluctance to wear a CGM, or their child’s ‘negativity’ towards diabetes.

“He doesn’t want to go on a pump!”

“She’ll only test before meals!”

“He refuses to even try a CGM”

“Her levels are always so high, she doesn’t care!”

As much as you have done an amazing job raising your child with type 1 diabetes, there comes a time when they are old enough to dictate their own healthcare. This is different to your ‘normal’ kids – you tell your daughter to get a vaccination and that’s a non-negotiable! With a type 1 kid, they grow up so much faster. They are asked to make more healthcare decisions in a day than most of their peers make in a year. When they are little, we have to make decisions on their behalf (a four year old doesn’t like injections but they have to be done to keep them alive…), but as they get older, these decisions must be gradually handed over.

Diabetes is an invasive and personal disease. To have your parents overriding your decisions takes away your bodily autonomy, and will either create resentment or a young person who takes no responsibility for their disease. Do you really want to drive your child away, or have a child who sees their diabetes as your problem?

“He doesn’t want to go on a pump!”
It’s a personal preference – it took me 2 years to go on a pump as I hate being attached, and I regularly take pump ‘holidays’. Work with your child, and respect their decision. It’s not your body that will be connected and sore!

“She’ll only test before meals, and she won’t show me!”
At least she’s testing!! She’s still taking responsibility. Talk about it – is she in burnout? Testing everyday is HARD – sometimes there are days where I can only bring myself to test once or twice. BGLs are private – I get snappy if anyone looks at mine without asking. She may be scared of judgement, or sick of being told how much insulin to give herself. Cut her some slack sometimes, and talk to her as an equal if you are worried.

“He refuses to even try a CGM”
Would you like a plastic device attached to you at all times, along with a pump? Would you like to have numbers in your face 24/7? It is a personal preference, and it is his body. Ultimately, as much as you may be involved in his management, it is his body and his decision. There is a reason for it, and you must respect that.

“Her levels are always so high, she doesn’t care!”
Nobody with diabetes just ‘doesn’t care’. There is always something behind it – mental health is a major issue for those of us who have diabetes. Please don’t put their apathy down to ‘non-compliance’. You probably have a beautiful trusting relationship due to you both tackling this disease together, so talk to your daughter. What is bothering her? 

What is the common theme? Respect your child’s decisions, and discuss their diabetes with them as an equal – they live with diabetes and at the end of the day, you are there as a support, not a manager. You guys are a team as they grow up, and as they mature you step back to let them take the stage!