You are currently browsing the category archive for the ‘Real life’ category.
In the last week, I have had no fewer than six women contact me with the same question. All of them are about to start using a pump and they are concerned about the most important and worrying aspect of wearing a life-saving medical device. ‘Where and how do I wear my pump?‘ they have all asked.
Wearing one’s pancreas on the outside of one’s body has its challenges. There is the challenge of having to explain what the beeping, vibrating, clicking box is all about. There is the challenge of mixing the pump with door handles and anything else protruding (the pump will usually come off second best). There is the challenge of finding a delicate, inconspicuous and subtle way of removing the pump from under clothes to use it.
And, there is the challenge of where to wear the bloody thing. Pumps do nothing for the line of one’s clothing. A square, hard box is lousy for smooth, uninterrupted lines, so I usually tuck my pump into my bra.
But what about for times when one is not wearing a bra? I have found that simply popping my pump in my pocket will inevitably results in a tube tied around a door handle, a yelp (from me) and a pump failing to do what it is meant to do (i.e. deliver insulin and keep me alive).
My walking-in-the-door routine includes high heels kicked off into a corner, pencil skirt removed and bra ripped off which means that my pump is suddenly free flying. Where does the little external pancreas go without the threat of bungee-ing to the floor and hitting the cat on the head?
Today, over at ASweetLife, there is a list of innovative and terrific designers who are solving this (obviously first world, but nonetheless important) issue. Finally, there is cute, attractive and sexy underwear that provides a solution to the ‘where to wear’ question.
It doesn’t surprise me that so many people are anxious about where to wear their pump, in fact it is one of the most frequent questions from people (usually women) who are considering a pump. When giving talks about pump use, I usually stand there and ask the audience if they can see where I am wearing my pump. Most are surprised that there is absolutely no sign of it, even though I often am wearing tight-fitting clothes.
I understand why this is such an important issue for people who are thinking of starting on a pump. Suddenly having something attached to your body 24/7/365 can be quite confronting. Wanting to know that it will work with our clothes should not be dismissed as a frivolous or pointless concern. Our insulin pumps become part of our body, functioning as an organ, albeit one that we have to drive ourselves. Finding ways to accommodate our external pancreas in a way that is beautiful and comfortable is incredibly important. Thanks to the designers finding a way to do that.
Perfect start to Mother’s Day. Just need to work out how to make this happen every day!
I had a gorgeous Mother’s Day yesterday, which included, amongst other things, breakfast in bed, a big family lunch at our place and, after everyone had gone home, an afternoon nap. It was quite glorious and I felt incredibly spoilt by my little family and fortunate to be surrounded by our extended family.
So it is with some guilt that I admit that in with all the happiness and celebrations and gifts and cards and flowers that I had moments of quiet sadness – both yesterday and in the lead up to the day.
Mother’s Day for me is about celebrating my mother who is, quite simply, the best mother in all the lands. There is no doubt about that in my mind.
It is also about being a mother and thinking about how much I love that. But in there, mixed up with the loveliness of it all, I feel pain and sadness.
I feel guilty about it because I do feel so lucky. I have a daughter and she is wonderful. I am a mother and I am so grateful. But I feel that I am missing something – or someone.
In the lead up to Mother’s Day, I was talking with a friend about how I felt and she said to me ‘At least you have your beautiful girl. A lot of people would be so thrilled with that.’ And I am thrilled with my daughter – of course I am. Feeling sad about the babies I lost does not mean that I don’t celebrate what I do have.
I ache sometimes for what could have been. I feel ungrateful even writing this, because I know and try to understand how difficult it is for women who do not have children. I read the stories about how hard Mother’s Day and other occasions are for people who don’t celebrate – for whatever reason and know that it sounds like I am ignoring how lucky I am and being greedy for wanting more.
Those quiet moments of wonder don’t stop hurting. I think about the baby that would have come before my daughter, but mostly, I think of the little ones that would have come after. I think of the one I lost two years after out little girl was born and think about how different our daughter’s childhood would have been if she had a sibling so close in age to her.
And still with so much rawness, I think of the one who would have been three now and how our family would have been turned completely on its head with the arrival of a new baby only a couple of years ago and we would still be muddling through the toddler years.
I had a dream the other night of Mother’s Day morning with Aaron and our daughter, and another little child – a three year old. I couldn’t see if it was a boy or a girl, but there was a bundling little kid also jumping on the bed, helping me unwrap my gifts and bringing me my carefully made breakfast. I kept trying to reach out for the child so I could hug him or her, but I couldn’t. The little one kept wriggling just out of reach, not showing me his or her face.
I don’t understand these feelings. I don’t understand how I can move – almost in a heartbeat – from feeling like the luckiest mum in the world to feeling pain. But it happens and it especially happens on these days.
I hugged my girl very tightly yesterday. She is the one that my body decided to hold on to and keep; the one I was able to nourish and embrace and watch grow up. She is the reason I am someone’s mother on Mother’s Day. I truly do believe that she is so very much enough. But that doesn’t stop me from wondering ‘What if…?’
Growing up, when I infrequently visited our family GP, he was always referred to by his first name. I do remember when we were really young putting a ‘Doctor’ before his first name, but we never referred to him by his surname. He was always ‘Dr Sam’ until he became just ‘Sam’.
Since being diagnosed with diabetes and becoming a frequent flyer of healthcare services, I have only ever addressed HCPs by their first name. (Except my endo who frequently gets referred to by her first and middle name together, but that is because my kid has the same middle name (named for my endo) so when speaking to and of each other, we use both names..)
When meeting a new HCP, I will walk into a first appointment, hand extended as we do our introductions. I always say, ‘Please call me Renza,’ although I don’t know that I have ever had a doctor not call me by my first name in the first instance. In fact, usually, when called in from the waiting room, they do so by using my first name.
So it’s probably not surprising that I found myself prickling a little as I read this article from a couple of months ago, written my an oncologist from the US. James Salwitz MD tells the story of a new patient – an elderly man who attended with his adult son. The son insisted on calling Dr Salwitz* by his first name which, apparently, was a little unnerving for the doctor. He referred to it as a cultural faux pas, suggesting that it was being done to… ‘diminsh the power and value of my experience, control and guidance.’
Now, I know it is possible that there are some cultural differences here. In Australia, we seem to have a far more relaxed attitude about being formal. And we also don’t necessarily consider that using someone’s first name shows a lack of respect as suggested by Dr Salwitz and some of the commenters at the end of the piece.
I asked a few people – also regular users of healthcare – and most said they used only first names. A few said they would always refer doctors by their titles, but nurses by their first names. This raises another point about the hierarchy of healthcare professionals. I’m not sure why one would be more inclined to use Dr Diabetes for the endo, but not Ms/Mr Diabetes for the nurse.
I treat and regard my healthcare team with nothing other than respect. I speak to them with respect, I respect their time and how busy they are, and I recognise their professional expertise. How I address them does not diminish this respect, nor undermine their qualification.
What was not clear in the article I read was how Dr Salwitz addressed the person he was treating (or his son). If there was an expectation from doctors that they are addressed by their professional title, then surely they should demonstrate the same courtesy (if that is what it is) and address their patients by their title and surname.
Any discomfort can be solved at the first greeting. This is one of the reasons the #HelloMyNameIs campaign is so important. Clear introductions from the beginning establish how people would prefer to be addressed. If unsure, the question ‘Is it okay for me to call you by your first name’ can be asked by both physician and consumer.
Feeling comfortable in our medical appointments is necessary if we are to get the most from the limited time we have before our HCPs. And for that to occur, there needs to be mutual respect and no imbalance of power. I feel very fortunate to have that with my team.
*Thought is best to refer to Dr Salwitz by his title throughout this post.
Business cards seem a little out of date these days. In our digital world, I more often than not now tell people to ‘Find me on LinkedIn’ rather then reach into my bag and locate a probably dog-eared business card. Although, with a name like mine, sometimes it is easier just to hand over something that has all my details printed clearly to avoid the song and dance of spelling my name (‘…no I-B; not I-V….’). So, I had some new cards printed when I started my new job and they are tucked away ready for use at conferences and meetings.
However, there are days that I wish business cards were more reflective of what is going on around me and could be used to explain how I am feeling or even suggest how someone might like to respond to my mood.
Here are some that I have found recently (and a couple of golden oldies) that would be particularly handy.
This one came across one of my SoMe feeds yesterday and I felt that Ricky Gervais was speaking directly to me. (We’ll workshop the ‘I hear Ricky Gervais speaking to me through the computer issue another time perhaps.) The constant arm-chair complaints from people about anything and everything, just for the sake of complaining is draining. This couldn’t have come at a better time or been more relevant to the crap I have been dealing with recently. Thanks Ricky!
Useful to hand out to those with ridiculous cure claims (carry a white Sharpie and replace cinnamon with whatever else is being recommend as required).
My family is Calabrese, not Sicilian, but the sentiment works nonetheless. This is from one of my all-time favourite movies, ‘The Princess Bride’.
For technophobes.
A useful card to hand out to people trying to drag me into their mess.
Always good advice!
For people who insist on sprouting motivational quotes at me, here is a pretty response.
When I am rendered completely speechless (it may happen….), this card explains what I probably need to get moving…
Exasperation in a Gilmore Girls quote.
Useful for explaining diabetes in five words.
And finally, this one has an explicit language warning and as my kid reads my blog (but hopefully won’t click), you’ll have to go to this link for what is fast becoming my favourite saying. (Do not click if offended by the C word – and in this case, I am not talking ‘compliant’.)
‘Your body is not broken.’
I received this message from someone who reads my blog. They were not being aggressive or rude, but there was an element of frustration in their words to me. The messenger was trying to get me to focus on the things that do work, rather than the things that don’t and she reminded me that the odds are strongly in favour of things that function as they were intended!
I am so tied up with how my body behaves and what it doesn’t do that sometimes I do forget what it can do. And I am (to a lesser degree, but still too much) concerned with how my body looks, and attribute the things I don’t like to the ‘broken-ness’ of it. I spend too much time seeing what I don’t like, leaving me unhappy and miserable with not only the malfunctioning inner parts, but also the outer shell.
I thought about this as I was eating dinner the other night – home cooked chicken noodle soup with heaps of veggies. But then I remembered I’d eaten a doughnut and a coffee and not much else for the rest of the day.
I thought of this as I climbed into my car this morning, but made sure I parked a distance from work so I could walk a little bit further than I if I had driven pretty much to the front door and found a space there.
I thought about this as I sat curled up in front of the television, mindlessly watching a movie, but remembered that I had been on my feet all day, rushing around, racing through the airport and on my feet for all but the hour I was strapped into a seat on my flight back home.
I thought about this as I lay awake at 2.30am, working on my iPad, knowing I should be asleep. But I remembered that I’d managed a nap that afternoon so my sleep debt wouldn’t be too horrendous.
I thought about this as I rushed around this morning getting ready for work, late as usual, and pulled on a pair of new and very high boots. There will be a time I’ll need to start wearing sensible shoes. ‘That day is not today,’ I said to myself as I stood up tall in front of the mirror, admiring the heels and buckles and leather.
I thought about this as I had a glass of champagne and then a second to celebrate a night out, reminding myself it was the first drink I’d had all week.
I don’t treat my body as a temple. I don’t do what’s needed to keep it ticking along as best it can. I don’t worry about things such as the number of serves of vegetables I eat each day; the fact that I don’t eat breakfast most days; that I eat bacon on Saturday and Sunday most weeks or how on the rare occasions I eat bread, I slather it an inch thick with real, salted butter.
I know my BG pretty much every minute of the day, but other numbers that contribute to the measure of health – weight, BP, cholesterol – I have no idea about, unless they’re fresh in my mind from a recent blood check.
I wonder if I should feel bad about how I treat my body. But I don’t and I don’t really think that if I did more, the things I consider ‘broken’ would be fixed. I know that if I were to look at the balance sheet, I would certainly be engaging in more healthy than unhealthy behaviours.
I also know that the things that may not necessarily be best for my body (high heeled boots, doughnuts and coffee for breakfast etc.) give me pleasure. My broken body allows for that. In fact, it makes me realise that perhaps it is not so broken after all. And that has to count for something.
The DOC is a moveable feast. I thought about this the other night during the OzDOC tweetchat, when Frank directed us through a series of prompts about what the community offers us.
When I first dipped my toe into the world of DOC, I was cautious. What was this world and who were the people who populated it? As it turned out these were ‘my people’ in that they understood the daily challenges of living with diabetes. Most of the online discussion was diabetes and I lapped it up.
I jumped in – completely and unashamedly – a short time later, desperate to connect with as many people as possible and hear as many stories as possible. I participated in tweetchats every week, I read blogs and commented on them, and, if the opportunity presented itself, I met up with people that I only knew from a small avatar and their Twitter handle.
Before long, I had a huge network of new friends who were, in some ways, living parallel lives, faced the same challenges and frustrations and wanted to celebrate the same victories.
I’ve been part of this world now for a few years and have always been grateful for the support and love that I receive. After yesterday’s post, so many people reached out to check that I was okay, offer their support and even ask if there was something they could do.
But the way I interact does change at times. Sometimes, I am more diligent about participating and encouraging dialogue. Other times, I just put things out there and leave them, not really wanting to engage in discussion.
As much as the online world is wonderful, it can be overwhelming. A need to pay forward – and pay back – the love and support is compelling. I feel guilty when I don’t respond to comments on my blog, reply to tweets or answer Facebook messages or emails. But there are times that I simply cannot interact as much as I would like to. And that is okay.
I have come to realise that my online world is similar to my in real life world where I have started to consolidate the people I regularly see and hold near and dear. As I have gotten older, I have realised the importance of having a few really close and trusted friends rather than a huge number of more casual friends.
One of my best friends is on secondment in France at the moment and I feel a huge and sometimes aching gap because she is so far away, even though we message frequently and I bullied her into joining Instagram so I could see what she was up to. That’s the way it is when you tighten the network of people who know everything – losing one (even just for a few months; even in digital times) is very noticeable.
Sometimes, the two worlds (the online and the IRL) cross over. Some of my nearest friends – the ones I need like I need air – are DOC friends. We may have met on Twitter, but after a few, or even just a couple, of face-to-face catch ups, their friendships are invaluable. I cannot imagine a week where Annie and I are not messaging furiously, or Cherise doesn’t send me some random photo and a quirky comment, or Kerri doesn’t reply to a rant of mine with #RageRenza. Grumpy’s irreverent comments occur most days making me laugh, and Alecia’s messages make we want to start a countdown to the next time I’m in NYC so we can hang out together, drink orange flavoured drinks and take photos with shaggy-haired jazz musicians.
These women (and Grumps) are flung far and wide. We may have been connected by diabetes, but that is certainly not why I consider them friends. Diabetes was the catalyst, but I know that if that were the only commonality, the friendships would have fizzled out by now.
This exchange with the wonderful (and offline as much as online friend) Georgie explains it (with a complete lack of eloquence from me, of course)…
I realised the other night in the tweetchat that after throwing myself into the DOC, I have backed off a bit. I don’t join into every discussion as I once would have; I still read lots of blogs, but don’t comment much anymore; I don’t ask all that many questions anymore; I really only to the #OzDOC chat, and I sometimes go weeks without popping in to say hi. This may be temporary – it may be just where I am at the moment. But I am getting what I need. And I am lucky the community allows for that.
For a couple of weeks now I have been feeling well below par. I am exhausted. I’ve not been sleeping particularly well, which is unlike me, and yet, all I feel like doing is sleeping. I’ve felt nauseous and not been interested in food, and even coffee has lost its appeal. (As I am a woman of particular age, when explaining these symptoms to others I see eyebrows rise questioningly, heads tilt and the words ‘Could you be…’ start to form on their lips. No. I am not.)
On Monday, my sister and I did some shopping – something we could both do for Australia our skills are so impressive – and I had to sit down in the stores while she was doing her usual trick of finding clothes marked down to a quarter their usual price in her size that looked perfect on her.
I went out for breakfast on Monday morning and when I got home, I had to sleep for a couple of hours just to be able to face the thought of going shopping.
As soon as I started mentioning that I wasn’t feeling great to those near and dear to me, they immediately suggested I go see the GP. But I dismissed it as being because I am busy at work with lots of deadlines looming / we just lived through a bathroom renovation / We’ve been binge-watching a new TV series and should be going to bed sooner / <Insert excuse here>.
I even told myself in a moment of spectacular denial ‘I have diabetes. It’s a chronic health condition and sometimes it makes me feel crap’, when the truth of the matter is that my diabetes has been somewhat quiet and manageable over this period and I would be furious at anyone who dared to automatically assume the reason for me not feeling a hundred per cent is due to my pancreatically-challenged state.
However, two weeks later, I think they may have been right. I probably should go to the GP and get checked out. I am sure it is just a low-grade virus and all it needs is time and rest. (Oh look – there I go again with the denial….)
As much as I hate to admit it, I do blame diabetes when I am not feeling well. I hear myself say things like ‘I had a couple of hypos yesterday’ or ‘I woke with high BGs’ to explain away anytime I feeling out of the ordinary.
I remind people all the time that ‘sometimes it’s not diabetes’ and yet I seem to be happy to use it as an excuse to myself when convenient.
When your body is broken to a degree, it is difficult to know what to do when the usual ‘not feeling well’ things come up. For people who don’t live day in, day out with a chronic health condition, they see it as irregular and react. Those of us with bodies that are a little rogue at times just decide that it is part of being broken.
It took my mum saying something for me to realise that I might want to delve a little deeper than deciding it was just more ‘system failure’. Where others would jump in and suggest I go to the doctor the second I mention not feeling well, mum gets that it could just be part and parcel of the tiredness we sometimes feel living with a chronic heath condition. She gets it – she lives it.
So when she told me the other day that I was ‘looking gaunt’ (proving yet again that at the core, she is (wonderfully) a true Italian nonna), and that she was a little concerned, I snapped to attention.
So – tomorrow I plan to go to pathology and have blood drawn, using the full blood work path request my endo sent me a couple of weeks ago as a precursor to my annual diabetes screening. I will do it and then I’ll follow up with my GP (who is sent a copy of the results) and see where I go from there.
It could just be a low level virus. It could be just tiredness or an iron deficiency. It could be something different altogether. But I am pretty sure it’s not diabetes even though I have been stubbornly trying to convince myself otherwise.
On this day in 1923, insulin became commercially available.
Fast forward 75 years to 1998, and on this day, I was given a shot of insulin as I sat in the offices of an endocrinologist. That morning, I was diagnosed with type 1 diabetes.
As I watched the doctor quickly and proficiently inject my arm, I had no idea just how precious, effective and dangerous this magic elixir could be. And I had no idea just how lucky I was.
I am not lucky because I have diabetes. Despite being one of those eternal (and annoying) glass-half-full types, I struggle to see the positives in being diagnosed with diabetes.
But I am lucky that if I have to have diabetes, it is here in Australia where I am afforded the luxury and ease of access. Getting insulin is as simple as asking a doctor for a prescription, calling the pharmacy to order it in and the next day picking up a couple of months’ supply for the grand cost of $40, after which I take it home, leave it in my refrigerator and use it as I need.
I have been doing this now for 18 years. My diabetes has come of age. It can drive, vote and drink (three things I should definitely not do if my glucose level is low.)
Diabetes is not a blessing. I don’t think I have ever hated something more and doubt I ever will. I despise the way it has intruded into my life and has eaten away at things I once took for granted. I detest that my loved ones have had to become experts, and are now fluent in the language of ‘diabetese’. I loathe the fear and terror that it has caused me at times.
On this day in 2016, I am thinking about having lived with diabetes for a significant part of my adult life. I am thinking of how it has shaped me, the times it has forced my hand, the way it has influenced the direction my life has taken. I see how it has made me think certain ways, re-evaluate aspects of my short- and long-term decision making and made me advocate for something in which I once had no knowledge (or interest).
But mostly, I am thinking about how I get to celebrate my diaversary as a day of success and triumph. And that many do not. My privilege is starkly obvious as I celebrate with a piece of cake, and, coincidentally, pick up a waiting insulin prescription from the pharmacy up the road.
So, today, I am making a donation to T1International to commemorate this day and those far less fortunate when it comes to living life with diabetes. If you have a spare few dollars – perhaps even just 18 of them – maybe you could, too.
I remember when absolutely nothing was open on Good Friday. I used to say that it wasn’t a particularly good Friday because there was nowhere to go to get a decent coffee. These days most of our favourite places are open across the Easter weekend. Well, not all…
The DOC boys’ excuse for not working on Good Friday.
This four-day break seems to be mostly about food, which is never a bad thing.
It started like this with a batch of the teeniest-tiniest cupcakes to take into work yesterday.
This morning kicked off with a visit to a café for breakfast (might not mention the bacon I had with my breakfast to my dad…), followed by popping into a favourite bakery for the best hot cross buns in Melbourne.
And the rest of the weekend will wind itself around cups of tea at home, or coffees in cafes with friends, a big family lunch on Sunday and an assortment of chocolate eggs (and bunnies) and baking.
There will be reading and movies and a music gig here and there.
It won’t all be about food. There will be some exercise too. I’m in a basketball battle with a few diabetes friends, so I’m getting a good workout there too… (Annie – this is ALL your fault!)
All in all, a few restful days to look forward to. If you are lucky enough to have the time off: enjoy! And if you are working – thank you!
And don’t forget to Give That They May Grow. No one wants to use the Royal Children’s Hospital. But we are so glad for it if we need to.
Despite what the media may say every time they herald the ‘end to painful injections’, it has never been the needles, the pump insertions, the finger-pricks or the sensor insertions that cause the most discomfort when it comes to living with diabetes.
They are not even where I feel diabetes most.
I feel it in my heart with an increased heartbeat when I feel the fear of ‘what could be.’
I feel it in my eyes as I see the evidence of diabetes on my body with devices, healing and healed scars, tape residue and a pump hidden in my underwear.
I feel it on my skin with the goose bumps I get when hearing the words ‘me, too’ from someone who understands what living with diabetes is truly about.
I feel it through my veins as I sense blood being pumped faster to alert me to a low.
I feel it in my smile when I see – and feel – the power of support and connectedness.
I feel it in my tears as they roll down my cheeks with the frustration of never seeming to be able to get it right.
I feel it in my fingers as I load insulin into a cartridge, feel for knots in an infusion line or grope around in my bag for my kit.
I feel it in the dark recesses of my mind when I consider the scary things that only get an airing when my defences are down.
I feel it in the pit of my stomach as the guilt that inevitably comes to the surface. Guilt about the burden I am on my family and friends.
I feel it on my lips as the tingling of a low or the dryness of a high remind me that I must attend to my blood sugar.
I feel it in my hip pocket as I fork out more money for more strips, for more pump consumables, for more sensors, for more insulin, for more health insurance, for more medical costs. Because there is always more.
I feel it in my words, as I struggle to articulate exactly how I feel, what I need, what I want.
I feel it my nose as the smell of insulin hits and automatically the words ‘It’s the smell that keeps you alive’ jump into my head.
I feel it in my mouth – the sickly sweet aftertaste of the jelly beans or the pineapple juice I have consumed when I just want to sleep.
I feel it in my ears as I hear the click of a lancet device, the beep of an alarm, the ticking of insulin being delivered.
I feel it in my feet as I walk barefoot to the kitchen and there is the sensation of a rogue BGL strip on the floorboards.
I feel it underneath me when I sleep and I roll onto a pump or lie over my sensor.
I feel it. It is everywhere.
