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This year’s eye screening appointment had aspects that were comfortingly familiar, and anxiously new. And I’ve come home with a very different feeling to the way I usual feel.
I’ve been going to the same private eye clinic for twenty years. I usually see the same orthoptist and always see the same ophthalmologist. This year, I saw a (new for me) orthoptist who opened with the clanger ‘Do you check your glucose levels?’ (I wasn’t aware it was a choice…) and followed up with ‘What is your glucose level usually?’. (This is not a question.) The rest of that appointment was comfortingly familiar – no changes in what I can read on the eye chart, excellent eye pressure and no vision changes. She put in drops and sent me to the next waiting room to wait to see my dreamy ophthalmologist.
And he is dreamy. I adore him. I mean, I hate seeing him and I tell him that each year. Then he laughs and thinks I’m neurotic, because I am neurotic, and that is how pretty much each and every year’s appointment starts. Comfortingly familiar.
This year was no different. He always asks how I am, how my family is, how work is going, what’s going on with my diabetes and other friendly chatter to settle me in and get an idea of what is going on in my world. He asked if I’d had much of a chance to travel and how I was dealing with COVID times, or, as I now think of it, normal life. Comfortingly familiar.
As was the way he shone the Very.Bright.Light in my eyes, made reassuring ‘hmmm’ noises and told me that there was absolutely no hint of any diabetes-related eye stuff going on in my eyes and that was truly great after twenty-four years of diabetes. I always do appreciate the way that he is such a great cheerleader for diabetes longevity and acknowledges what a slog it can be. Comfortingly familiar.
‘So,’ he said. ‘It’s all great news again from a diabetes perspective. However…’
Huh? ‘However…’? We don’t do ‘However…’. We do me standing up and promising to return the following year. Not ‘However…’ Yet, here we were. The anxiously new part.
‘…However, I can see really early age-related macular degeneration in one eye. Really early. There’s nothing to worry about at all.’ He looked at me. ‘You don’t need to worry.’
And then I laughed, and he laughed because the idea of me not worrying is hilarious, and I had already jumped beyond worried and landed somewhere near stressed, anxious and ready to burst into tears. (I at least managed to wait until I got home for the last part.)
I had questions and he patiently answered all of them. We spoke about family history. Apparently if a parent has AMD, their kids have a 50% chance of developing it. (Looking at this as a positive because it means that my sister might be right. Happy to take this one for the team, Toots!) He then spoke to me about things to do at this stage that help. The first is to not smoke. I’ve never been a smoker, so that’s an easy one. Then he asked, ‘Do you eat well?’ My heart sank. Another food-related thing? Turns out that eating leafy greens is protective which is fine because I love vegetables and it’s mandated in the hipster suburb where we live to eat three serves of kale a day. And finally, keeping up with regular appointments. Annual visits are still final.
‘So, Renza, It’s not diabetes. This is because of your age. After all, you’re 50 next year.’
‘Settle down!’ I said and suggested he dial things back a little. ‘I’m not even 49 yet.’ He looked at my chart again and needlessly pointed out that regardless of my current age, I am still turning 50 next year. (I’ll just point out that this was also comfortingly familiar because he frequently mentions that I am getting older.)
I sighed. And got into the car with my dad and told him my news, opening with the comfortingly familiar and then moving onto the anxiously new. We went for a coffee, and I tried to focus on the positives. And then I got home and had a little cry.
Because here’s the thing. I expect things to break. I’ve been told that things are going to break thanks to diabetes since the day I was diagnosed. And so, whenever something doesn’t break, it comes as a huge surprise. I’ve been holding my breath all week in anticipation of today’s appointment. I know that this is just a tiny hairline crack at this point, but it still has triggered a lot of stuff in my head right now. Sure, this may not be a catastrophe and sure, there is enough rational thinking to know that it’s early, I’m linked in with great healthcare professionals, and we know what to look for. But still. It’s another thing. Another worry. Another concern. Another part of my body not working completely properly, or at least indicating that it’s not going to work properly in the future.
And so, I’m home now with a very different feeling to the way I usually feel after my annual eye screening. I’m already turning to the community to see who I can find there who might have some advice and understanding. I’m involved in a European ad board which relates to AMD and DME, so know that there is a whole network there who I can talk to. And I’m writing here to see if anyone out there has an experience to share. Because that’s what I do. Turn to community. I have the HCP stuff sorted. Now I’m looking for my people in the real world…
More about eyes
How having a brilliantly kind ophthalmologist means I never miss an eye screening.
A chance encounter with an optometrist friend.
The comfort of knowing how eye screening appointments go.
The time I had a needle in my eye.
Always a worrier when it comes to eye screening.
All about my first cataract surgery. And after my second surgery.
What my dad has to do with my annual eye screening.
I had my annual eye screening today. If you want to get an idea of how I was feeling in the lead up, you can read this, or this, or this. Because it’s always the same.
The orthoptist called me from the waiting room, and as I followed her in, she said ‘We’ve been seeing you for eighteen years now.’
‘That’s right,’I said. ‘Obviously, we were both twelve years old when I first started coming here.’
She laughed and agreed with that assessment.
‘You know there’s a reason for that, right?’I asked her. ‘You and Prof Ophthalmologist know how I feel about my eye screening. And you have always been so kind and lovely about it. I have never been made to feel foolish. If I have been late with a screening check – as I often was back in those early years – I never felt shamed or told off. You have always been kind to me. Kindness in care is so underestimated.’
We chatted some more about that and then she did the usual checks and delivered the news as she always does. Diabetes-wise everything was exactly as it was last time I was there, and I let out half a sigh of relief. I still had to see the ophthalmologist, so the other half would have to wait a little more.
Finished with me, she escorted me to the second waiting room where I kept myself occupied trying to read things as my vision blurred more and more, and convincing myself that I was not having some sort of heart event, despite my racing heartbeat.
The rest of my visit was as unadventurous as the beginning of it. My ophthalmologist was his usual self – he made some cheeky comments about my aversion to seeing him, asked me how I was, commended me on living with diabetes for 21 years, and then looked at my eyes. After announcing them to be ‘pristine’ (I asked if that as a technical term and he said in this instance, yes), we spoke a bit about how flying seemed to flare up the blepharitis I had been recently diagnosed with. (That’s all for another blog post, but basically, it’s inflammation of the eye lids.) I noted down how to best manage those flares and what I needed to watch for in the future. My heartrate had returned to normal and I was breathing easily again.
As I put on my coat, I mentioned the eighteen years I’ve been attending his clinic. ‘I really don’t like the fact that I have to come and see you. I don’t look forward to it – in fact I pretty much dread it,’ I said. I watched him smile and shake his head slightly. He is more than used to my melodramatic tendencies.
‘But I am eternally grateful for how generous you and your staff have always been. I love that I have never felt anything other than safe here, and that says a lot when the thought of someone so much as looking at my eye makes me want to cry. The fact that you touch my eyeball to check the pressure of my eye – or whatever you do – is just beyond terrifying. But I would never think to miss an eye screening now – never. I know when it is due, and I am completely dialled in to it all. A lot of that has to do with knowing how this whole experience will play out.’
I picked up my bag and he handed me some samples to help my eyes when I am stuck on aeroplanes for days on end. ‘I’ll see you in a year, He said.‘But earlier, of course, if you have any concerns or notice any changes. You are really doing an incredible job living with diabetes, Renza.’
I thanked him and before I walked out the door said, ‘I don’t really have a choice. I live with diabetes. I don’t really have any other choice than to make the best of it. But having kind healthcare professionals like you around makes it infinitely easier. I really hope you know that you make it easy for me to show up.’
Instagram stories keeping me occupied in the second waiting room.
I was in Sydney last Friday for a day of meetings, and once they were done, I met up with a new diabetes friend, Amira, who I met only a couple of months ago, but had instantly connected with in that way that only those dealing with messed up beta cells do.
I met her at work and then we walked to have a coffee and a chat. After a while, our conversation turned to her work as an optometrist. Amira told me about the camera she uses to do retinal scans.
I mentioned that I’ve never had a retinal scan as part of my eye checks. My ophthalmologist always dilates my pupils and spends a good amount of time looking at the back of my eyes for any changes. This is how my eye care has been managed and I have always been happy with it (and by ‘happy’, I mean: ‘it makes me cry just thinking about it, but I do it anyway’).
‘Would you like me to take a photo of your eyes?’ Amira asked me. ‘You can send the images to your ophthalmologist to keep on file.’
I thought about it for a moment and took a deep breath before answering. ‘Sure,’ I said. ‘Let’s do that! Thank you!’
We walked back to her office and Amira explained how the camera worked and how I needed to position my eyes. After scanning both my eyes, she sat with me and explained exactly what she could see. She pointed out each part of the eye and what she was looking for and patiently answered my questions. She showed me how she could see the artificial lens that had replaced my own when I had my cataracts removed. (And she clarified that the black spot that I was the first thing I saw was actually a mark on the camera – not my eye.)
She told me exactly the same thing I’d heard back in May when I most recently saw my ophthalmologist: ‘Looks great. There’s nothing to be concerned about.’
I wish that THIS was the first time I had ever seen the back of an eye of someone with diabetes, instead of the frightening image shown to me less than eight hours after being diagnosed, when my first endo showed me a photo of an eye with – apparently – diabetes-related retinopathy. I say ‘apparently’ because I had no idea what I was looking at and had no idea what anything meant.
But that image, accompanied by the words ‘This is what happens with high blood sugars,’ has resulted in years and years of seeing an out of range number on my glucose meter and automatically imagining my retina decomposing…behind my very eyes.
This, combined with other scary images used as part of diabetes awareness campaigns, not to mention the occasional poster in the waiting rooms of various HCPs, is why I am so terrified about anything to do with eye care.
And when we also add the blame and shame that inevitably accompanies discussions about complications, using language that disempowers, it is no wonder that my response to Amira asking if I wanted a photo of my eye was to automatically panic.
Despite twenty years of regular checks, with positive outcomes and a supportive ophthalmologist, the legacy of that initial encounter and subsequent frightening images have taken their toll.
Amira emailed me the images of my eyes, and I’ve spent a long time looking at them – because I know what I am seeing (plus, my eyelashes look awesome!). This is information. It is a snapshot in time and, thanks to Amira’s explanations, I understand what is going on .
‘Come and have another scan next year,’ Amira said. I might just do that. While it will be great to have annual images as a comparison, the best part will be I get to spend time with my awesome new diabetes friend!
Amira has provided me with this explanation of the camera she uses and what it does:
‘Ultra Wide Daytona Plus provides contrast and both red-free and green-free filtering, as well as autofluorescence modalities (so we can see layers in front and behind the retina and assess which part is affected).
Photo documentation means we can monitor and track overtime, allowing for early detection. 200 degree retinal scan compared to a standard scan that often gives around 45 degree view.’
There is something to be said for the comfort of routine. Yesterday, I had my annual eye check. And like clockwork, it played out the same way it always has.
Just like always, the week before my appointment, I received a reminder message from doctor’s office. That cued the call to my dad to lock him in for chauffeuring and morale duties.
Just like always, a little part of the back of my mind was occupied with the upcoming appointment and a series of ‘what if’ scenarios played out.
Just like always, the night before my appointment, my anxiety levels were heightened. I tried to alleviate them with a bit of twitter humour.
Just like always on the day of the appointment, Dad picked me up and just like always, I told him how nervous I was. ‘Twenty years of diabetes now, dad.I’m worried this might be the appointment where the news isn’t all good.’
And just like always, he said ‘Just wait and see. There’s not point worrying before you see your doctor.’ His morale boosting comments, just like always, right on point.
Just like always, I nervously waiting in the second waiting room to be called in to the first appointment.
Just like always, the orthoptist had me read from a chart and put drops in my eyes and sent me on my way to the next waiting room. And just like always, my vision blurred and my heart rate increased.
Drops in; vision blurring. Waiting…
Just like always, my dreamy ophthalmologist called me into his room. (Dreamy because he’s lovely to look at. But more dreamy because he is just so damn kind to me in my ridiculous nervous state). ‘Are you well,’ he asked, just like always asks, and I realised that I have not always answered, ‘Yes. So well…’
Just like always, he said: ‘Your vision and eye pressure look good, Renza. No changes at all since last time.’
Just like always I allowed myself to smile a tiny bit. But no too much. Because the reason we were really there hadn’t happened yet.
Just like always, he turned down the lights in the room and shone an almost painfully bright light into my eyes. He asked me to look this way and then that way. He looked at the front and back of both of my eyes.
And just like always, when he’d looked for all he needed to look for, he turned the lights back on and smiled at me. ‘There is no sign of retinopathy or any other diabetes-related eye problems. Your eyes are great.’
Just like always, I breathed again. I smiled. Really smiled. ‘I’ve had diabetes for twenty years now. Today’s news has made me really happy.’ I said. And I thanked him for giving me such good news.
Just like always I wandered back down the corridor, feeling far lighter. I paid the bill, I found my dad.
And just like always, he looked at my beaming smile and said, ‘I told you so. Just like I always do.’
Yesterday, I had my annual eye screening. In an endeavour to calm me as much as possible from the anxiety I feel about this annual check-up, I made plans so that it would be the same as my check every year. My dad drove me there, sitting in the waiting room while I faced my fears in the doctor’s office.
I have been going to the same eye specialist centre for 15 years. I’ve seen the same ophthalmologist the whole time and his orthoptist has been the same absolutely delightful woman. She does a super job of calming me down, checking my vision and eye pressure and popping in the dilating drops. And then she sends me off to see her boss so he can have a look at the back of my eyes.
‘The main event’ part of my appointment is always fairly similar and I am fine with that. I know what to expect, I know the order of things and I know that I will have an opportunity to talk about anything concerning me.
We start with my ophthalmologist asking me how I have been and what has changed in my life over the last 12 months. I mentioned that I had changed jobs and we had a chat about that for a moment.
Then he asks if there have been any changes with my diabetes in that period and is always pleased (as am I!) when I report on the mostly boring nature of my diabetes. At this point, he usually asks about my family and any recent travels.
And then, the eye exam. The lights go out, I rest my chin on the contraption and he spends a good 10 to 15 minutes having a look at my eyes, explaining what he is looking at, what he is looking for and, most importantly to me, what he can see.
Or – what he can’t see. I am always hoping that he can’t see any diabetes-related eye disease.
‘Remind me how old you are, Renza,’ he said as he turned the lights back on.
‘I’m turning 43 at the end of the month,’ I said, blinking furiously as my dilated pupils tried to get used to the suddenly bright overhead lights.
‘And you’ve had diabetes for 18 years, right?’ he asked.
‘Eighteen and a half…,’ I said.
‘There is absolutely no diabetes-related anything going on in your eyes, Renza. It is all good news from me. You should be really pleased.’
‘I am,’ I said, nodding. I could feel my breathing starting to return to normal, unaware until that moment that I’d been holding my breath.
‘Okay. So…I’ll see you in a year. Of course, come back sooner if there are any changes. But first, is there anything else you wanted to mention?’
‘Oh – yes!’ I suddenly remembered that I had written myself a note in my phone. ‘I have noticed that my eyes have been really watery lately – maybe in the last couple of months. I can’t go outside without tears streaming down my face. It’s a little better if I am wearing sunglasses, but not always.’
‘Let’s have a look,’ he said. ‘It could be a blocked tear duct.’
‘Wait – what are you going to do…?’ Panic was setting in again!
‘Just tilt your head back for a second and I’ll pop some drops in first. And then I’ll do what I need to do.’
I knew that it was not the moment to ask exactly what was going on. I also knew that he has been my eye specialist for 15 years and knows me and my anxieties. And I also know that I trust him completely! I could hear paper rustling – the sound of something sterile being freed from its package.
‘Renza, I want you to look right up over your head for a second.’ At that point, I saw the syringe. ‘Okay – in a second, you are going to feel some saline running down the back of your throat. Nothing to worry about.’
And at the moment I tasted the salt I realised that THERE WAS A NEEDLE IN MY EYE. AND I WAS AWAKE. And I was not screaming. Or in any pain.
‘That one is fine,’ he said. ‘Let me check the other one.’ And he repeated the procedure, again announcing all to be okay. ‘It’s all fine – nothing to worry about at all.’
‘Great,’ I said. ‘Um…did you just stick a needle in my eye?’
‘I will never say,’ he said, smiling at me.
‘I think we need to acknowledge this new phase of our relationship. I feel I have really grown as an eye patient.’ I said as I gathered up my bag. I thanked him for his time – but really I was thanking him for the awesome ‘report’ and the lovely way he deals with me.
‘I’ll see you next time, Renza. Everything is looking really good.’
I walked out of the room. My dad looked up from the magazine he was reading and stood up. ‘All okay?’ he asked. I nooded. ‘Told you!’ he said – just like he always does.
I smiled. ‘Guess what? I just had a needle stuck IN MY EYE.’ I told him. ‘Did you hear me? A NEEDLE STUCK IN MY EYE.’
I settled the account and made an appointment for the end of next year at the front desk and we got into the elevator. ‘I just had a needle in my eye,’ I said, this time quietly and mostly to myself.
‘And my eyes are all clear.’
We walked to the car. All done for another year.
Pupil still slightly dilated. But an all-clear from the ophthalmologist.
I don’t consider myself a worrier. I never assume the worst, in fact, always assume things are NOT the worst. A cold is a cold – never pneumonia. I’ve had my thyroid operated on because of a benign lump, and when I’ve found subsequent lumps, have never thought it anything other than a pesky bit of rogue tissue. And I’ve always been right. ‘I’ve got this!’ I tell myself as I deal with pretty much any health stuff.
A headache is a headache – certainly not a migraine and definitely not a tumour.
But all of this is thrown out the window when it comes to how I behave about eye issues. I panic, I am paranoid and I expect to hear the worst.
I’m not sure why it is diabetes eye complications that cause me the most concern. I don’t seem to get as panicked when I have my annual kidney screening or have my cholesterol checked. It’s the eye thing that gets me each and every time.
Recently I had my post-cataract check-up. I was actually seeing the doctor because I noticed a slight change in vision and some pain in my left eye, but in addition to sorting that out, I would be having a full eye examination. My ophthalmologist would be making sure my new lenses had settled in okay and were doing whatever lenses are meant to do, and while I was there, he would be having a good look behind my eyes to check for any diabetic retinopathy. He would have a really clear view for the first time now that those pesky cataracts had been removed.
With this in mind, I was not thinking that everything would be clear and look fine. I was expecting to hear that the changes I’d noticed signalled some retinopathy and we would have a discussion about treatment. I did not think that all would be fine. I worried. I didn’t feel that I had this at all.
Following a routine distance vision and pressure check (all fantastic), my pupils were dilated and I was sent back to the waiting room. I concentrated on my vision getting blurry and felt my breathing quicken as I waited to be called back in.
My lovely ophthalmologist, now more than used to my histrionics, joked about how relaxed I was becoming seeing him. I twisted my mouth into what I hoped was a smile and told him that even after having cataract surgery, eye things still made me nervous as all get out!
He started by taking a look at the new lenses and was pleased to see that they were great. No problems post-cataract. There was a small scratch on my eye which explained the pain, but nothing else at all. And then he checked my retinas.
‘It just doesn’t make sense’, he said, snapping the light back on once he’d had a really good look at both eyes – checking and checking and checking again. ‘Those cataracts were pretty nasty and you got them very young. But there is absolutely no diabetic retinopathy in either of your eyes. Nothing at all! It looks really, really good, Renza.’
I could feel my shoulders relaxing and realised I’d been holding my breath. He was watching me carefully. ‘I don’t need to see you for a year, Renza – unless of course you notice a change. Your eyes are great. But I think we need to talk a bit about you worrying so much about your eyes. You do everything right here. You come and see me regularly. You made the decision to have your cataracts removed at the right time. You may get some diabetic retinopathy, but we will pick that up early and treat it. Your worry is understandable, but not necessary. Are you speaking with someone about it?’
I started to tell him that I’m really not a worrier. I don’t get anxious about things. But my eyes….my eyes. I don’t know if it’s all tied up in the anxiety and fear I have of physically having my eyes checked or if it is something else. But I stopped myself, because he is right. I am a worrier about this.
I thanked him for being so kind – and for being the bearer of good news. I may have hugged him a little. And I left. I paid the bill and made an appointment for twelve months’ time. I clamped on my sunglasses and prepared myself for dealing with the bright Winter sunshine. And I breathed. No need to worry today. I’ve got this.
‘I’ve been compliant,’ I said to my ophthalmologist with great pride. ‘Compliant’, I said again and smiled at him and waited for a pat on the back. It didn’t come. So I tried again, emphasising my point. ‘Four times a day; both drops in my eye. Just like you said. Didn’t miss a single drop. I was com-pli-ant.’
If there is a word that is evokes rage in me it is compliant. When used in terms of diabetes management, it makes me see red and start imagining the painful things I’ll do to the person using the word. Actually, it’s usually used with the prefix ‘non’ to give the word noncompliant which is even worse.
At the World Diabetes Congress last year, Twitter nearly broke thanks to a group of DOC renegades sitting in a lecture given by a doctor who insisted on using the term ‘noncompliant diabetics’ to illustrate the point that some of his patients were having difficulties following their diabetes treatment plans. There we were, non-compliant diabetics because we couldn’t keep our BGLs perfect and follow the rules and do the things we ‘should’ do and, you know, do it all with a smile. Bad, bad, BAD diabetics. This photo shows how happy I was:
So with this hatred of the word, why was I bandying it about in front of my ophthalmologist like there was no tomorrow? And saying it so proudly? And frequently?
The answer is quite simple. Following the treatment plan I’d been given after my cataract surgeries was easy. Two different eye drops; four times a day; for 4 weeks. Then it was over. It was something that, for me, was manageable. There was a point where it would stop and then I wouldn’t have to think about it again.
The complete opposite of living with diabetes where there is no end point and no time where a box can be ticked and it will all go away. It was so lovely to be able to do something that was predictable, easy, knowing that there would be a time when it didn’t have to happen again.
Understanding the relentlessness of diabetes management is difficult to communicate. I don’t really expect people to truly appreciate what it is that is so frustrating and annoying and challenging. But I do expect a little respect and a little acceptance when things are not going to plan. I also think that using judgemental words that suggest that there is a deliberate attempt to ‘break the rules’ is unfair and lacks any sort of comprehension about a condition that never goes away.
Perhaps my delight in announcing so loudly and proudly to my ophthalmologist about how clever and bright and shiny I’d been with my eye drops was because for once I felt like I was actually doing something right when it comes to my healthcare. Perhaps I needed recognition (probably more from myself than anyone else) that I could follow directions and get the desired results. Perhaps I just needed to believe that I was doing something that would result in predictability and a satisfactory outcome. Diabetes doesn’t ever provide any of those things. No matter how compliant you are.
First day of the New Year and I’m full of hope and happiness. And complete and utter frustration. If I cover my right eye, the possibility of excellent vision, gorgeous colours and clear lines is there. I can see it and I can reach for it. When I cover my left eye, I see a murky mess where colours are dull, lines are blurred and there is no such thing as white – just yellowing gloom. And when I look out of both eyes I see a mismatch. With a headache. This is the reality of life between cataract surgeries.
One of the gorgeous women I work with bedazzled me up an eye patch!
The good news is that the first surgery was a success. To say that I was stressed is an understatement. I was anxious and nervous and prepared to walk away and simply put up with my eyes as they were. Even as I was waiting for the anaesthetist to administer drugs, thoughts of jumping off the table and running away, surgical gown open at the back and flying in the wind, into the car of my waiting chauffeur played in my mind.
But in less than 30 minutes of being knocked out (yep – I got my general anaesthetic!), I was awake with one eye patched. There was no pain, just grogginess from the anaesthetic. And the next morning, I sat in my ophthalmologist’s room as he gently removed the patch, gingerly cleaned out the eye and then….then I could see. The sharpness of my vision startled me. Outside, the blue of the sky and the green of the trees had me gasping. Everything was in focus. At least, it was out of the ‘good eye’. I was equally startled by how horrendous the vision is in my right eye.
The downside of cataract surgery is that the synthetic lens that has replaced my own milky lens can’t focus. So while my distance vision is great, I need glasses to read now. It’s a new world of trying to remember where I left my glasses (usually on top of my head) and every time I so much as want to check the time on my phone, I need to put them on. But I’m getting used to this and once the other cataract is removed, I’ll be able to spend hours upon hours finding the perfect pair of glasses. You can hear the disappointment in my words at the thought of adding further accessory shopping to my list.
I love a new beginning as much as the next gal and I’ve done a lot of things lately so that things really do feel new and full of possiblities. But until I get the second cataract removed I feel a little in limbo. In the meantime, it’s reading in very limited stints, napping in the afternoons and doing everything possible to deal with the ‘mismatch’ headache. And counting down until the next eye gets done!
Happy New Year folks.
Reading glasses.
Diabetogenic 