Travel Time

A side effect of having type one diabetes is that normal, routine events are generally more complex for you than for the average person.

I am someone who enjoys travel. I don’t feel the need to travel endlessly or see the entire world before I die, but I like to experience different areas. At this point in time, I have travelled to England, France, Iceland, New Zealand, Singapore, Japan and South Korea (not including the domestic travel I’ve done within Australia).

Once your trip is booked and itinerary planned, it’s time to consider how to accommodate your half-dead pancreas. The first step is ensuring you have all the medications you need. For someone on an insulin pump like me, this means having your usual short-acting insulin as well as some long-acting insulin. If you’re like me and have relied on an insulin pump for 17 years, you’ll then need to do research or contact your friendly neighbourhood diabetes educator so you know HOW to use said long-acting insulin (generally your total daily basal rate injected once a day, but different long-acting insulins have different time frames during which they’re effective so don’t take this post as gospel).

Next, you need to acquire enough equipment to adequately treat diabetes. This includes (for me personally, as a pump user) insulin pump reservoirs, pump sets, spare blood testing machine, syringes, strips for both your blood tester and back up tester, alcohol wipes, cream for treating your skin to avoid scarring, ketone strips (urine and/or blood) and a notebook with all your insulin pump settings in case your pump gets wiped of information.

To avoid being tackled or taken into questioning at the airport, it’s also recommended that you take a doctor’s letter with a list of your conditions as well as what is needed for the management of the conditions. That being said, no one has ever asked me to see it. Although SOMEONE did throw out my cream once (looking at you, Changi Airport).

Once you get into the country, it’s a whole different ball game. I’ll leave that post for another time, because I’m watching Jenna Marbles on Youtube and it’s distracting, dammit!

Well well well…

Look who’s come crawling back!

ME!

Hello! I haven’t posted in a long time, as you may have noticed (or probably not, let’s be real here).

The truth is, I’m sick of writing about diabetes. I don’t know how I thought I could sustain a blog career based on it. So, while I may occasionally post about life with T1, I’m more interested in just posting blogs when I feel like it, about what I feel like.

So, I’ll probably post next time someone pisses me off with an anti-feminist comment or whatever.

BYE!

My Life in a Stranger’s Hands

Recently, my health insurance company (HBF, I’m looking at you) decided to not only hike up the price of their health cover, but also change their policy toward insulin pumps.

Over the past few years, it has become harder and harder to get a new insulin pump from HBF. Keep in mind, an insulin pump is only covered by warranty for 4 years by the manufacturer. This means that when an insulin pump fails (and they do, and it’s terrifying), the manufacturer will send you a new insulin pump overnight and either fix your old one or let you keep the new one.

If my pump failed and I was not under warranty, I would need to rely solely on insulin injections. I would need to file a bunch of forms to get a new pump, have them processed by my Endocrinology team, have them processed by HBF, then finally processed by the company. This can take easily over a month. Here are some facts.

  1. I have not relied on injections since I was 8 years old.
  2. I do not know how to manage my diabetes with injections.
  3. An insulin pump reduces your risk of diabetic complications by over a third.

This means if my pump failed, my diabetes would suffer. My control would falter, I would be at higher risk of high blood sugars. This in turn could end up in my hospitalization. It places me in danger. Does HBF care about that though? No, they don’t.

The last insulin pump I got through HBF was difficult to get. I had to find “fault” with my pump, call the pump company and register an official complaint, get that form sent to HBF, then HBF had to approve it. I had found the process stressful, wondering if HBF would approve me for a new pump.

When the new changes were announced, where insulin pumps would no longer be covered by basic cover (and that, by the way, the basic cover and all over covers will have a price increase), fear gripped my heart. I can’t describe the feeling of having someone else in control of your livelihood. The thought that some CEO of a multi-million dollar insurance company can decide whether I deserve controlled treatment of my life-long and potentially fatal disease is unfathomable to me. A large number of type ones in a facebook group (yeah, we have our own groups. Dead pancreas gang for life) were all posting terrified comments, concerned about the ramifications of these changes. I was panicked to the point of tears, imagining all the worst case scenarios where I would be stranded without my insulin pump.

Thankfully, I have transferred to a new health fund. I’ll be saving over 700 dollars a year over my current policy (which hadn’t had the price increase yet!) and my insulin pump will, thankfully, be covered.

So a big middle finger to HBF. My 24 year membership has ended in flames.

Chelsea :~)

 

He Saved My Life With A Peanut Butter Sandwich

Long time no see!

I’ve arrived a little late to the party, but on the 14/11 it was World Diabetes day. I’ve decided to share a recent story that captures a small part of life with type one.

A few weeks ago, my blood sugars were on a rollercoaster. Whenever the weather changes, and particularly in Summer, my blood sugars drop. It is seemingly uncontrollable and I can eat, eat, eat without significant impact on my levels. I don’t alter the insulin input from my pump because the adjustment period going into Summer generally only lasts a week.

To preface this story, every night I keep a bottle of Lucozade and a muesli bar beside my bed. This is because waking up low is disorienting and awful at the best of times. Many times I’ve had to crawl to the kitchen to get a sugary drink because I haven’t physically been able to walk and have had nothing nearby to help me.

One night a few weeks ago, my blood sugars were on their merry trip down down down. I woke up multiple times over the period of a few hours. Waking up clammy, with heart palpitations, confusion and sweaty as all hell. Once I managed to navigate my confusion and realize I was low, I drank an entire bottle of Lucozade over the three times I woke up (to “fix” a low blood sugar, it usually takes less than a third of the bottle). Desperate and in a daze, I reached for the Lucozade a final time. Realizing it was empty, I felt panic. I disconnected my insulin pump and tried to keep myself awake, waiting for the sensation of my blood sugars rising.

Feeling weighed down with cement, I mustered all of my energy to clumsily whack my arm down over my boyfriend’s chest. I could not even point my finger to poke him, my concentration and strength was so weak. He woke up immediately, thankfully, and asked if I was okay.

“I need a peanut butter sandwich,” was my slurred response. Luckily, my partner knows me well enough to conclude that I haven’t woken him up with a hankering for a sandwich, but actually need help.

He immediately brought back some Fanta and a peanut butter sandwich (what a legend!). I drank some more Fanta and messily shoved the sandwich into my mouth, leaving lots of leftover crumbs over the bed for me to enjoy in the morning.

Soon after, my blood sugars FINALLY normalized. It’s always terrifying feeling so helpless, especially in the middle of the night!

I’ll end this post with gratefulness. Thank you, Jesse. You saved my life with a peanut butter sandwich.

Chelsea :~)

 

Hide and Seek

Some select few may have noticed that I have been posting on this blog less and less. I doubt many have gone so far as to wonder why, but I’ll explain it anyway.

I’ve used this blog as a bit of a space to rant. I wanted to educate as well, but mostly this has been an outlet. The issue is, that I’ve spent a large chunk of my life hiding my diabetes from people. The positive feedback I got from my first few blogs was amazing, but after awhile, I felt like writing this blog was making me focus on my diabetes more.

Most people would label me a “good diabetic”. I have no signs of complications, I make sure I check my sugars if I feel unwell, I try to avoid troublesome food and I keep my levels stable. Behind the scenes, however, I am so deeply ashamed of being diabetic. I hate that once it is known, I am put into the spotlight.

I’ve worked in the same place for 6 months without people realizing I’m diabetic. I’ve dated and slept with people without them knowing I’m diabetic. I sometimes wait to administer insulin until way after eating, so people I’m with won’t notice, won’t ask questions, won’t see that I’m different. I once went into the city with friends, and while at the train station my blood sugar levels dropped significantly. Rather than admit this, I lied and said I was thirsty. So I walked to a nearby McDonalds, by myself, at midnight, with a blood sugar of 2.0mmol/L just to buy a coke. The entire walk I felt so mad, so upset, that not a single person noticed that I needed help. Yet who were they to blame, when I never exposed them to my diabetes? Never explained what a low looks like, or what assistance I might need because of it.

Starting this blog, I felt strong. Like I didn’t need to hide. These days though, I feel myself hiding again. It’s incredibly hard to find a balance. 17 years on, and I’m still not certain I’ve accepted that I have type one diabetes.

So bear with me while I play hide and seek. Hopefully I’ll find myself eventually, and I’ll try to involve you guys in the journey!

Confusedly yours,

Chelsea :~)

Insulin Pump Therapy

Long time, no see! I think writing so many emotionally-charged posts in a row was a bit much for me- I’m not usually much of a sharer when it comes to feelings. So, I’ve had some time to regroup and am now back! Starting off with a more factual blog, but I’m sure emotions will follow (for those of you who are reading merely for insight into my mind).

So, insulin pump therapy! Let’s get into it.

First off, insulin pumps are not the only way to treat T1. Many others use pens instead. I haven’t been on needles since I was 9 years old so I don’t feel fit to comment on that kind of insulin therapy!

I started on insulin pump therapy in the year of 2003. I’m told that I was one of the first 50 children in WA to receive one, woo! I started on it in the hopes of obtaining better control over my blood sugars. Insulin pumps are said to reduce your risk of diabetic complications by a third. If wearing this thing on my side for the rest of my life means I get to keep my feet, I’m 100% okay with that!

My pump has 2 basic functions. All the new fancy technology means some insulin pumps now can link in with glucose monitoring devices and alter your insulin dosages from there- I’m old school and find that all too much. So I’m gonna stick with what I know!

The liver continually produces glucose. In order to control these random spurts of glucose, my insulin pump has what is called a “basal rate”. Basic function number one. This is a steady trickle of insulin that continuously infuses without the user having to touch any buttons. It is a pre-set program, of which you can have a few. The basal rate helps to control blood glucose levels in between mealtimes and during every day life.

Basic function number two. Every time I consume carbohydrates, I calculate the grams of carbohydrates I am eating and program this into my pump. The conversion to unit of insulin required is completed (by a pre-filled setting in the pump catered to my own insulin needs and responses) and administered to cover the carbohydrates I’ve eaten. This feature is called a bolus.

The insulin pump infuses into the body via a small plastic needle called a cannula. These can be 6-9mm long. This cannula has to be changed every 3-4 days, not only due to the irritation of the skin but also because you’ve probably run out of insulin by then! Some diabetics are unable to tolerate cannula sites and they need changing every day. I was blessed with good skin (everywhere but my face, apparently) and so can tolerate one cannula for 5 days, but I definitely don’t do that if my diabetes educator is asking 😉 This cannula has a connector on it, so I can unattach my pump and it’s tubing without removing the entire cannula.

It’s recommended that I only remove my insulin pump for 1 hour at a time. Much longer, and my blood sugars will begin to rise of their own accord without the basal rate to tame them! They can of course be removed for longer, but the adverse effects aren’t usually worth it in the long run. I will only remove my pump to shower, swim, or if I’m exercising (hahaha). It is also recommended to remove insulin pumps if your blood sugar is less than 2.0mmol/L. I occasionally unattach mine at higher levels if I can feel my sugars dropping quickly.

There you go, pump basics! Tell me if you have any more questions!

Chelsea :~)

 

20170409_141209

My insulin pump and line with cannula! The blue part detaches. You can tell why I laughed when talking about exercise now 😉

 

Persecution

Forget the injections, the finger pricks, the constant mental calculation of carbohydrates in your meals. One of the biggest struggles of being type one is the persecution.

Take a moment and think. How many physical chronic illnesses can you recall where the individual is constantly blamed for their condition? I’ve been considering this for over a day now and can’t think of a single one.

Since the age of six, I have been not only persecuted by the people I meet, but by the government as well. The government campaigns so heavily and negatively about type two diabetes- yet, do they ever actually say type two? No. They simply say “diabetes”, casting us all into the same group.

First of all, educate yourself before believing fully in something. Yes, type two diabetes CAN be as a result of obesity, poor diet, lack of exercise. Did any of you actually know that type two has a strong genetic component? That my GP, who is a tall and slender man as well as obviously “in the know” about health, has type two diabetes? The picture the media and government paint of the type two diabetic is grim and unrealistic. I once spoke with a diabetes educator at length about whether type two diabetes is actually a condition you can reverse with healthy diet and exercise. She told me that in her entire career, she has known only two. So many type two diabetics change their lifestyle completely, and sometimes it can improve their outcome but, ultimately, it is rarely reversible.

I digress. The point of this all is: that the way the government perpetrates type two diabetes (by focusing on their weight, by never naming the specific condition), has a negative impact on type one diabetics. Not only do we cop the persecution and judgement of others for our auto-immune disease, but it pits us against type two diabetics. Many type ones dislike any type two diabetics they meet, they think “You could reverse your entire situation, but I am stuck with mine forever”. I was one of these people for a long time. This was because I was uneducated. I was influenced by the advertisements on diabetes, and felt that the harassment I faced was solely due to the type two community.

A long time I have struggled with guilt and self-doubt surrounding my diabetes. It is difficult enough, facing all the medical responsibility throughout every day life. To be accused from an early age of doing this to myself increases the burden tenfold. I have felt ashamed of being diabetic for such a long time, and starting this blog was for myself. To begin the journey to self acceptance.

Shame is an intense emotion. As a teenager, I would date someone for over a month before they found out I was diabetic. As an adult, the only way my co-workers would find out I was diabetic was by seeing my insulin pump and asking what it was. I’m embarrassed to admit that this is something I still do- despite working in a hospital with health professionals! I try to act easy-going, but the truth is that any mention of my diabetes makes my whole body stiffen. I am so wracked with humiliation that I instantly go into defence mode.

Think of a child being told “why don’t you eat healthier then?” when they admit to being diabetic. Think of a teenager confessing to being diabetic, only to have their entire body looked up and down to assess their weight. Think of an adult, a grown-ass human, being asked “Should you be eating that?” every time they lift anything other than celery to their mouth.

I’m a human, just like anyone else. My illness is not an invitation for you to assess my weight, my lifestyle, my diet. I shouldn’t be made to feel guilty each time I eat a slice of cake. I shouldn’t be embarrassed of my body because I’m terrified of someone assuming I have type two diabetes. I shouldn’t have to exercise to earn your nod of approval.

I am the expert in my disease. Not you. So please, ask questions. Be open, be curious. But don’t ever, EVER question my management, or tell me how to live my life. After all, would you tell a non-diabetic they shouldn’t eat such-and-such?

Chelsea :~)

THE CURE IS HERE!!!

People often update me on new advancements in diabetes treatment. Media brands every step forward as “the cure!!!!”, and my name will be tagged in the comments of these Facebook posts. No one has ever really considered one thing: do I even want a cure for diabetes?

Now, of course I’d like there to be a cure. Everyone’s body and mind responds differently to type one diabetes, and not all diabetics are as fortunate as I am in regards to control. Diabetics are more susceptible to many serious conditions, as well as conditions unique to type one diabetics. I’ve never experienced any of them (yet- fingers crossed!), and I can’t imagine the pain those who experience these conditions go through. I want a cure for them. I don’t want people to die from diabetes. Would I take the cure though?

If you’d asked me when I was younger, I’d have said yes without a question. No mum having to go on school excursions and camps with me? The freedom to drink coke and have a big slice of cake at a birthday party? HELL YEAH! I went through a stage where I said I would wait a while to take a “cure” to make sure there were no side effects before I took it.

Now, however, I am at an age where I’m really establishing my identity and my sense of self. On hard days, the desire to magically have a fully functional pancreas is overwhelming. On regular days though, diabetes is just a normal part of daily life with minimal distress. I’ve been thinking recently about diabetes more- starting this blog has certainly encouraged me to fully evaluate diabetes and how it relates to me. I thought of taking some kind of cure recently and was surprised by my reaction. Delight? No. Relief? No. Chest-gripping anxiety that clawed it’s way through my stomach? Yep!

Health professionals and diabetics are constantly encouraging the idea that a person has diabetes, a person is not “diabetic”. The difference is, a person with diabetes is separate from their disease. A diabetic is exactly as the label suggests- the main part of the individual. While I fully support this for those who feel that everyone focuses on their diabetes and not who they are as a person- I think of myself as a diabetic. I am not Chelsea, who happens to have diabetes as a side note. I am Chelsea, and I am diabetic. It is who I am.

Being a diabetic is entrenched in me. It is my every day. Even while I might be thinking about a task at work in the forefront of my mind, in the back there is a special and constantly functional room labelled “DIABETES”. I may be mixing an antibiotic or dressing a wound, but somewhere in my mind I am assessing. My hand is a bit shaky- is that because I’m tired or is my blood sugar dropping? I’m having trouble concentrating- am I hungry or am I low? I feel very thirsty- is it from running around the ward or has my blood sugar skyrocketed?

Every activity of my life involves some kind of diabetes-related thought process. If I’m eating something new for a meal, I’m anxious about calculating the carbohydrates correctly. If I’m about to shower, I have to check in with myself and assess if I may go low or high while showering (which has happened- nothing more awkward than being a teen in the shower and needing your mum to bring you a sugary drink to tide you over rinsing out your shampoo!). Am I about to go to bed? Better make sure I have a blood tester and lucozade next to my bed. I am constantly trying to prepare myself for anything diabetes throws my way.

It would be an absolute relief to have the burden of diabetes taken off my shoulders. However, I often wonder, what would I think about? What do I do with that little room in my brain that is constantly evaluating carbohydrate amounts, insulin requirements, how many insulin pump supplies I have left? It would definitely be a big step into the unknown. And for now, I like knowing things. Losing diabetes would be like someone cutting off a limb. Like someone taking the essence of yourself and taking a big chunk of it away.

That being said, I’ll never know unless a cure actually happens. I’d probably look back on this and laugh for being so concerned about my identity!

Chelsea :~)

Diabetes Clinic

Ah, diabetes clinic. Also known as The Day of Judgement. Today as I sat in the dank corridor of Sir Charles Gairdner Hospital (SCGH), I pondered my lifetime of diabetes appointments.

It all started at Princess Margaret Hospital (PMH). I attended diabetes check-ups at PMH every 3-4 months for 12 years. The itinerary for a PMH check-up differed greatly from adult clinics. First of all, they were immensely more stressful. At younger ages (keeping in mind I started attending clinics from 6 years of age), I was mostly unaware of the stress a clinic could induce. I noticed sometimes that my mum would be a little on edge. As anyone who has met me knows, I’m a blurter. I blurt things out without thinking, pretty much all the time. It composes about 80% of my daily speech. Now and then at PMH clinic, I would blurt something. Usually it was something along the lines of “I DRINK 250MLS OF FANTA” when the endocrinologist or diabetes educator is asking my mum how we treated my hypos (low blood sugar). Unbeknown to me, I actually drank 150mls of Fanta. The endo/educator looked at my mother with judgement while she hastily corrected me. She would occasionally snap at me for something small later as a result of all the pressure on her, leaving me mortally wounded and oblivious to the reason why. I get it now. Constant judgement for over an hour on how you care for your child. It’s anyone’s nightmare!

Clinics at PMH in general (special occasions omitted) went like this. Arrive at PMH. Go to clinic, say my name. Sit and wait. A diabetes educator would come around and call me into a room. There, I would have my height and weight taken. They would also take blood from a finger prick to measure my HbA1c. HbA1c is a tool used to get an idea of the amount of sugar in your haemoglobin over the previous 6-8 weeks. This enables the diabetes team to evaluate your overall control.

Back to the waiting room! We wait a little more. Stress over the fact that we didn’t bring my blood glucose record book (eventually they stopped asking- some people just don’t have the brain space to remember things). Then, we get called into the endocrinologist’s room. The one we always went to had a portrait of cut up oranges in it, and for some reason I loved it. The endocrinologist would usually just chat to my mum while I sat in my own world (as a child) or sat in broody silence (as a teenager). I would usually beg for my blood pressure to be taken. Mum and the endocrinologist (almost always Dr. Price for the past 6 years of my care- a living legend!) would look over my insulin regime, discuss any hypos or issues with sugar control. Then I’d be set free and taken straight back to school.

Occasionally we would see a dietitian or social worker at the clinic. Social workers helped organize healthcare cards and the like- nothing too exciting for me to remember. The longer we went to clinics, the less we saw dietitians. While at the adolescent clinic, I refused to see them altogether. Now, I work alongside dietitians for my career, and I admire them. I believe that they are a complete necessity to the patients I treat, and I commend their work. But my personal experience with dietitians has been bleak. At first they were a great help, along with diabetes educators, at teaching carb-counting and what kind of foods were low GI etcetera. But soon after, they pretty much only talked about my weight. As a (normal-sized, I might add) seven year old, it wasn’t very pleasant to have adults discuss my weight and tell me I was overweight every 3 months!

8th bday.jpg

(Me blowing out the candles at my 7th birthday party. Definitely not overweight!)

So, from paediatric clinic at PMH, we move to SCGH. In the public system, you go from roughly 3-monthly visits at PMH to 6-monthly (if you’re lucky!) visits at SCGH. I started off in the young adults clinic at SCGH, with an amazing educator named Gwen Babel. Unfortunately, it takes more than a great educator to keep a supportive system in place. I was soon placed into adult clinics at SCGH, once they noted I was already in control of my diabetes and able to manage it. Adults clinic is… unpleasant. It’s a mix of type one and type two diabetics. At my appointment today, I was the only person under the age of 65. Usually, being with a bunch of senior citizens would make my day! Unfortunately for me, senior citizens don’t like me with bright pink hair when I’m not in my nursing uniform :~(

My usual visit at SCGH takes 20 minutes, compared to the usual hour or so at PMH. I sit in a corridor. I get called into a room. My weight, height and HbA1c are taken. I sit back in the corridor. I see the endocrinologist. I go home. I have to specifically request to see a diabetes educator, and sometimes the closest slot they have is 6 months away!

Due to the immense pressure on the public system, my last visit before today was 14 months ago. During my last visit the doctor informed me that since I was so well controlled, I could go a year without seeing them. A pretty great system! Here’s your reward for taking care of yourself- you are stripped of your support! As a health professional I understand why this is the way the system works. I don’t mean to criticise any of the people who work at the diabetes clinic, they are an amazing team. However, the stark difference between the support in paediatric and adult clinics still mind-blowing to me after all this time. All those advertisements aimed at type twos to exercise and eat well… how about giving them access to the services they need? All this pressure to maintain a HbA1c below 8%… but no guidance on how to get there?

ANYWAY, that’s me done. I turned a little ranty there, my bad.

Until next time!

Chelsea :~)

How Embarrassing!

The title of this post is in honour of Girlfriend magazine’s “How Embarrassment!” section. The fact they wrote ’embarrassment’ always infuriated me and boy, taking it into my own hands feels so good.

Now that I’ve expelled my need for correction from my system, we can move along to the actual topic at hand. A recent post I read inspired me to recall all the humiliating moments that being diabetic has gifted me.

I think one of the first things I realized was embarrassing about being diabetic was when I first got my insulin pump. Gone were the days I could casually walk past a desk. The tubing from my insulin pump often catches- on the corner of desks, on people’s clothes, in my nephew’s toes! The worst is mindlessly walking past an object and being catapulted backward by your pump line. It is not only a massive shock, but looks very strange to people who don’t know. The amount of times I’ve caught it on something in front of a patient and just looked like a very strange un-coordinated nurse! Recently, a guy posted on a diabetic’s group on Facebook (yeah, we have our own groups! No fully-functioning pancreases allowed!!!) that he was in a club when his pump line got stuck on another guy’s jacket and he got pulled all the way out of the club (credit to Michael Wood- your trauma made me laugh, hard).

The first night I had with my insulin pump, I was staying at Princess Margaret’s Hospital for Children overnight. I had no idea how to go to the toilet with this thing attached to my pants! My mum ended up coming into the stall with me and holding the pump in the air while I peed… embarrassing is the part where we both realized I could go to the toilet exactly as I normally would!

By far the best time I’ve had in relation to embarrassment vis a vis diabetes was on the behalf of someone else. I was at university with a friend, talking to a guy named Aaran (hi!) when he suddenly noticed my insulin pump. He excitedly screamed “Is that a tamagotchi?!” and was completely mortified when I told him it was an insulin pump. How I wish it were a tamagotchi!

None of these come close to the awkwardness of sexual encounters, but let’s steer away from that for now…

Chelsea :~)