#RABlog Week 2016: Post No.1

So, here we are again...#RABlogWeek. Once again, I will be following daily prompts and posting each day for the rest of this week on topics pertaining to RA. I'll include the link so that, if anyone wants to follow up, will take readers to where posts from other bloggers can be found. Don't forget, we bloggers LOVE to get feedback, so please do comment if you feel so moved.

The prompt for today is:

Starting Stories: tell us about your diagnosis, what you were thinking, or feeling or when did you first know something was wrong. Or maybe you were having a break from a biologic medication and you decided to give it another try.

I wrote my 'starting story' last year, largely in response to the many women with children who have Rheumatoid Arthritis (RA), and the things they were saying online about not feeling as if they were the mothers they wanted to be since getting sick. So it's coloured by a parenting context, but includes the story of my original diagnosis, so I won't rewrite that this time. You can read that post HERE. What I'll do instead is have a more detailed look at what happened around four years ago.

As I wrote in the aforementioned post in May last year, I was originally diagnosed twenty four years ago, and for the most part, albeit with ups and downs, gradual deterioration and intermittent flares, experienced mild disease that was mostly managed with GP care, pain meds and NSAIDs (anti-inflammatory drugs). However, the one thing that can be almost unfailingly predictable about RA is that it is entirely UNPREDICTABLE. My disease is no longer mild, it's highly aggressive, and only just controlled by a raft of the biggest drugs I've ever had to take - and that has all happened fairly recently, and has changed just about everything in my life.

Four years ago, I was well into the second year of my employment as a marketing coordinator for a big, busy Sydney CBD Anglican Church. The job was varied, busy, and had regular pressure points and deadlines, which included the publication of a large monthy magazine. The hours could get quite long, and it could all get very stressful. I've always worked well under pressure, but it does take me down if it gets too much, or if it doesn't let up. So, when I found myself feeling increasingly exhausted I put it down to work stress. I made sure I was getting regular exercise to compensate for being at a desk all day, and to help me sleep, but that, too, was becoming difficult.

My regular morning walk was starting to be a real challenge, with increasing pain and stiffness. Then joints in my legs started to jam at work if I was at my desk for too long. I remember one day, moving to stand up, feeling my knee jam, but not really registering it in time to stop pushing myself up from the chair - and then it cracked. And the pain... Absolutely sickening, just awful. I was fighting to not throw up. The residual pain from that was bad enough that I didn't do my walk the next morning, and that was the beginning of a steady attrition of my exercise program.

We moved house twice in the next six months - more stress - and each time, I was able to help less and less, and got exhausted faster. Then I caught a cold. I landed a chest infection very quickly, and it got frighteningly close to pneumonia. I was two weeks away from work.

I never really came good after that. I was often in significant pain. Bought stronger over the counter pain meds, and eventually landed, on a walking stick, in my GP's surgery to ask for stronger pain meds and a stronger NSAID. She wrote the prescriptions, and then announced that it was time for a rheumatologist, because clearly something had changed. She gave me a list to call to see who I could get into fastest, and I was incredibly lucky to get a cancellation with a doctor who could see me straight away.

He started me on prednisone immediately to try and drop the inflammation levels, while he organised a pile of blood tests and got acquainted with my back story. Once again, although the disease had clearly kicked into overdrive, there was no positive rheumatoid factor. He started me on two DMARDs - Sulfasalazine and Arava - but the disease was spiralling out of control, and despite those, huge doses of Tramadol slow release (painkillers) and 50mg daily oral prednisone, I deteriorated to the point of needing a walking stick all the time, and struggling to manage a full day at work.

Then came the start of Methotrexate (MTX). That was a complete disaster. I had a terrifying reaction to it - more for those around me than for me...it knocked me out. I'd have a few hours after taking it of being able to function, and then I'd HAVE to lie down. And then I was pretty much out of it for the rest of the day and that night, and I have very few real memories of the five weeks that followed. that was the end of being able to manage at work, so I was sent home on extended sick leave. I continued to try and work from home, but until I stopped taking the MTX, my cognitive abilities were seriously compromised.

Eventually, I was admitted to hospital, and was there for two weeks while comprehensive tests of everything that COULD be tested were done, and then I was given a 500mg dose of IV prednisone. THAT was a miracle. Within 24 hours, I was able to walk again - painfully, but I could do it. My liver enzymes had spiked so I had to stop the DMARDs, and had to wait before I restarted them. The Prednisone burst lasted me a few months, and I started to deteriorate again, and had a booster late that year - to keep me going while we waited out the period of time on DMARDs that had to happen before I could potentially qualify for biologic drugs.

We got there eventually, and I did qualify - after more blood tests and an MRI that established unequivocally that it WAS definitely RA, and it was active, AND there'd been damage to joints.

There is a prompt later in the week about biologic drugs, so I'll write about that in more detail in another post. However, I'm on my third one now, and it's working reasonably well. I'm not 'well' per se. It's a continual balancing act. But remembering that awful period of sudden and severe deterioration over a very short period of time reminds me of how much better I am now by comparison.

It's been an enormously confronting few years, and has continued to deliver big challenges. I eventually lost my job, as I'd been maintaining the magazine and other parts of the job as well remotely, but a warm body in the office was required, and I wasn't able to predict exactly when I'd be able to do that again, so someone else was brought in. That's been very hard. I've tried to build up my freelance work, with mixed success - freelancing being notoriously unpredictable. I live with a level of 'normal' pain now that I have to consciously shove out of the way in order to think about other things. All my activities are carefully considered, and have to be balanced against how I am on any given day.

But, life goes on, and among other things, active disease has brought me into a diverse community of other people with RA which has meant new friends and connections, so it's not all been terrible. Sick or not, I'm still me in here, I still have dreams and aspirations. How I got about filling them may need to be considered differently, but it doesn't mean they're not there, and that I'm giving up on them. I'm stubborn like that! The side effects from the drugs have been hard to deal with too. I struggle with weight gain and hair loss...somehow I need to figure out a way to reverse those two... I'm acquiring a big collection of very funky FLAT shoes, because I won't wear heels again...but that, in itself, is fun. Shoes are shoes, after all, and there are some pretty cool flats available!

Surviving the big interstate move...

It's been more than a month since my last post... To those who wait with bated breath for each post (eternal optimist that I am...), please accept my apologies. And this will be short, as among other issues that come with a move, just on a full calendar month post-move, we are STILL not online... 

Our internet and Dragon Dad's mobile phone are a combination thing, and we were with a carrier who was charging like a wounded bull. In these days of a multitude of carriers, he took himself to them and asked them if they could do better, as he'd had enough of such a monster monthly bill, and was contemplating defecting to someone different who could offer a better deal. You'd THINK, given current marketing strategies, they'd have got on board to meet his needs, and not lose a customer... But, no. Couldn't be done, they said, For what you require, that's the cost. So, once we'd landed here, he chuffed off to a major competitor who had a good deal on offer, which included 150mins of free international calls (important when there's a brother overseas) and signed up. Received the new phone, got the number ported over, selected the accompanying internet plan, and then looked forward to the call announcing the time the tech would come and hook up the cable. Only, that never happened. Back and forth he went, on the phone and to the shop, and just piles of conflicting info about work orders and no work orders - much confusion and frustration building... Eventually, he went and parked himself in the shop and refused to leave (it was late on Friday) until it was sorted. So, I am now eagerly awaiting a courier with a modem, and hooking us up sometime this week - no more dongle with limited data!!! 

I have, however, made contact with my new rheumatologist. I'm not due to actually see him until November, but we've chatted on the phone and got a number of things organised. On Tuesday, I have the adventure of finding the hospital where I'll have my infusions, which is in an area I don't know at all... I have an appointment with the dentist to fix the tooth that spat out a filling two days after arriving here - he's booked up, but I'm on a cancellation list. Have found an excellent chemist who have already done one order of my biologic most efficiently. That was for a home based infusion...something that the drug company offers, but that I really didn't like much - hence the hospital based one happening next week. The cats were also very concerned and hugely protective, and parked themselves on my lap to supervise the whole time the drip was going...

We've been out and about, exploring the area. I've found the important things - ie, the good coffee spots...! Still sorting out the basic shopping places that fit us. Catching up with people I've not seen in ages. All that stuff you do in a new place. 

So, we survived. There are still boxes to unpack, and furniture to get. But our little house is starting to feel like home. I'm noticing - and appreciating - the lack of humidity. The days, when the weather gremlins remember it's spring now, not winter, are crisp and sunny, and have brought out some delights in the garden. In things to come, next week is RABlog Week. Regular readers may remember that event last year, and those who don't, or weren't following me then can go back to September 2015 and find the posts. It's a big international event and a big blogging challenge which I will be joining again. So, look for the posts next week on topics around Rheumatoid Arthritis. Meantime, please do enjoy the bluebells from our new front garden - I certainly am!

Moving House

It's that time again. We're moving. Again. A phone call this morning let us know we'd been the successful applicants for a rental house in the capital city of what will be our new state of residence. 

I hate moving. I did once add up how many houses I've lived in over the course of my life - it's WELL into double figures - large double figures. In the eight years Dragon Dad and I have been together, this will be my 7th move. That's just ridiculous. But it's also a long term pattern. The longest time I've ever lived in one place was six years - the house my parents bought when I was three and a half. That's a long time ago, and wasn't really a very long time.

On the one hand, it's a huge relief. This move has been 'pending' for the last eighteen months - if something can actually be pending for that long! It will be a good move for us for a great many reasons - not least being that Dragon Dad will no longer have to commute when the business is busy, as much of the business end of things are located there. I have lots of people on the ground there, while my network here has slowly shrunk since ceasing outside work, and getting sicker. It's WAY cheaper to live there than it is here - the rent on the new place is less than half what we're paying here. It is a smaller house, BUT it's a much nicer house. And we don't need a house the size of the current one. And it's still going to be cheaper than a similar house would be here, given the location. There is a great shul community there, and lots going on, so that will be a big part of our lives again. Big backstory that I'm not going into here, but it's been something missing for us for quite a while here. 

However, on the other hand, there will be losses. The two family members with whom I'm closest - No.1 son and a cousin - are here. The Stepson is here. My wonderful rheumatologist is here. He has someone lined up for me in the new city, and he assures me that the new guy and I will get along, as their methods and approach are very similar. My fabulous GP is here. It is SO hard finding a good, old-school GP. My awesome physiotherapist is here. The physio who, after thirty years of a dodgy chronic neck issue and countless physios who've treated it, not only fixed it, but gave me exercises to maintain function AND special ones to do if it starts to seize so that it won't. I've not had to have it treated since... I have seen her for numbers of other issues, but not the neck. We have a wonderful veterinary team here too, so I'll have to find a replacement for them as well.
 
Finding replacement medical teams is hard. Very hard. They are very important relationships, given I have an active chronic illness. I'll do it, because it must be done. But it will be a challenge, and I do SO loathe doctor shopping. I do have a dentist there - saves me hiding behind my fear of them to put off the necessary work, which you can read about HERE.

And then there are the logistics. ANY move is a challenging event. Interstate moves are so much more challenging. At the very least - on the positive side - there will be removalists doing it, and everything will be moved in one hit. Unlike the way we've done the last few moves, with Dragon Dad hiring a van and doing most of the heavy lifting. We do still have to pack, and once Dragon Dad gets going, he's a cyclone, so inevitably, there have been important things that have taken ages to find at the other end because his packing logic is completely different to mine. Given he's planning to get the cats and me there ahead of the truck loading here, I need to make sure that the list I'm making today of crucial items are in boxes I pack and label so that I can find them with a minimum of angst when the truck arrives and I'm supervising the unloading. Last time we moved I couldn't find the kettle for a few days. Dragon Dad doesn't drink tea or coffee, so no impact for him. It was another story entirely for me!

It'll be a huge adjustment for the cats. They came to this house as kittens. So there'll be new spaces to conquer. A new yard to explore. New crazy sprint routes to map out for their lunatic periods - it's one of those houses that, due to the layout and position of doors, offers a circular loop that will enable high speed laps, as long as the strategic doors are open!

We're offloading a large quantity of furniture. Part of this move is the fresh start - the first house Dragon Dad and I will share that's just the two of us. Coincidentally, the Stepson is moving out (of his mother's place) and into a share apartment with his girlfriend and they have nothing. So they're scoring most of what we don't want. Some of it would have had to go anyway, because we're downsizing, but it's time for a change. Most of it is Dragon Dad's from when HE moved out, and it'll be nice to refurnish with things we choose together. While I'm not a hoarder - he sometimes says I am, but I'm really not - moving constantly since early childhood means I've got emotional attachments to certain items of furniture and various bits and pieces because they mean 'home' to me. So regardless of the actual dwelling, as long as I have those things, it can become home. I have to be quite stubborn about those, because Dragon Dad is the opposite. He is quite capable of dumping an entire house full of furniture and starting over from scratch. Given that most of my remnants of household gods went when I moved in with him, I'm not prepared to give up any more. At least that means we'll have a dining table straight off in the new house, because my vintage baker's table is definitely going with us! 

Writing this blog post is partly a means of processing that this much talked about move is now an actual reality and the next few weeks are going to be [awful] hectic. And I'm procrastinating. The Stepson's move starts happening later today when Dragon Dad goes to pick up the rented van, and I have a bedside table to empty out. No great loss, that one - part of a collection of timber chests of drawers with baskets for drawers - ruinous for stockings and anything delicate and I've always loathed them! 

ONE useful thing that did occur to me this morning that could count as a benefit... the census next week requires our address to be included, and that's to be kept for four years, instead of the previous 18 months. Well, it'll be accurate for roughly two and a half weeks, and then we won't be living here, so what they have for the next four years for our location won't be valid. That kind of tickles too!

So, now I need to bite the bullet. Pause briefly to eat some lunch, make my lists properly, and get on with it. 

What's your phobia?

A friend posted on Facebook this morning about seeing her dentist for some necessary repair work. While I made positive noises in a comment on her post, my insides were clenching at the very thought of dentists...

I have an intense phobia about dentists, and a spin-off phobia that I've come to realise comes from the dentist one - needles. People tell me I'm silly, it's *just* a needle, and there's *nothing* to be frightened about going to a dentist. The thing about phobias is that they're not rational. My rational mind is perfectly capable of telling me the same sensible things. Then someone sticks a needle in me and my blood pressure spikes, my palms sweat, my whole body tenses, and until the needle is out again, I'm a bit of a mess. Even more so with a dentist - with that, I am bathed in cold sweat, I shake, I'm white, and have all of the above going on as well. 

A year ago, I broke a filling - something that can't be ignored. I don't have a dentist in Sydney - and I've been here since the end of 2005... The filling that had broken was a temporary one that had been done in mid 2005 (pretty good temporary filling!). Dragon Dad was in Melbourne for work at the time, and I was due to head down for a couple of weeks, staying with a good friend of mine. A good friend of hers, and acquaintance of mine, is a dentist. I called her and explained my situation, only to find she'd just chipped a tooth and was about to make her own appointment. So, I asked her to make two back to back ones - explaining my utter terror and asking her to warn them at the surgery, and the need to have someone drive me... She did it, but I could tell she was humouring me. That didn't last. She sent me in for the first appointment, because once we got there, I'd started to get the shakes and she realised that sitting and waiting was only going to make it worse. By the time I got out - and our friend the dentist was VERY good - I was a complete mess, and couldn't speak. The dentist had noted a bunch of work that needed doing but said dealing with the filling would be all he'd do that day. He was quick, efficient, very gentle, and hummed most of the time he was working - except when he stopped to tell me what he was going to do next.

I survived. I always do. But it's always incredibly difficult, and knowing that one of the things I'm going to have to do once we're moved and settle is to set up a string of appointments to deal with all the other things that need to be fixed is something I just try hard not to think about. 

And the needles. Dealing with RA for twenty four years means there have been a lot of needles. Far more than the average healthy person is ever likely to encounter in a lifetime. So, based on the concept of aversion therapy, you'd think I'd have managed to get my head around dealing with them. I haven't. Moving from weekly shots of my biologic drug to four weekly infusions has dropped the actual number of regular needles to two every four weeks instead of five (there's a four weekly blood test too...). The flip side is that I have to sit with the bloody cannula stuck in me for anything up to an hour and a half, depending on how busy the clinic is, and how well the infusion goes. They do three sets of obs in that time - at the beginning, during and at the end, so I see the blood pressure spike and changes in my pulse rate each time. It's a real, physical reaction.

So, where did it come from, and why, after dealing with it for decades is it such a big thing...?

I grew up in country South Australia. At the time, there was a free, school-based dental service for primary school children. With what came to be terrifying regularity, a note would go home, and shortly afterwards, I'd be lined up at school along with the other kids for that day awaiting the taxi that would ferry us to the primary school across town that hosted the dental clinic. 

I'm pretty sure, in hindsight, that it was staffed mainly by rookie dentists fresh out of their university course, and that I endured a number of unnecessary procedures. These young dentists had no real idea how to deal with a frightened child, and to this day I can see that huge hypodermic of local anaesthetic being passed across my face in full view. Eventually, my mother pulled me from the program and found a local private dentist. I can still remember, with dreadful clarity, my first visit to her, and her shock to have me shaking and sweating in the chair. She let Mum stay with me and hold my hand, talking nonsense through the whole visit to try and calm me. She was very patient, but short lived, as she was subbing for the dentist who headed up that clinic, who travelled from Adelaide a few days a week to maintain the service. I was transferred to him, and he was also very good, totally understanding that I was traumatised and struggled with the visits. Later, as a young adult living in Adelaide, I found his home practice and would travel well over an hour to get there, rather than try and find another dentist and have to explain. 

Following my Melbourne appointment last year, I've become more and more aware of the deterioration of my teeth. It can be an associated problem of autoimmune diseases, and given I have fairly high maintenance - if neglected - teeth, it's not really surprising that there are a number of issues now. I have two front teeth with significant chips that need fixing, old fillings in front teeth that need replacing, some tender spots further back, and they're WAY overdue for a full professional clean. 

I'll just have to bite the bullet, so to speak. As I do each month for my blood test and infusion. And go on biting the bullet every time I have to deal with a needle, dentist or both. Because, no matter how well I try to prepare myself, my reaction happens. Because it IS a phobia, and the underlying trauma keeps it alive. It's good to know that my Melbourne dentist isn't going to just brush it off, but will tread carefully around it, as the nurses in the infusion centre have come to do. Ultimately, having it recognised and having health professionals prepared to work with it does help a little bit. 

What's your phobia, and how do you deal with it?

No Knead Bread

For weeks, I kept stumbling over posts about a no knead bread that turned out fabulous artisanal looking loaves of bread, so I finally clicked on one and had a look. Honestly, it seemed too good to be true. I've been making my own bread on and off for years, and the only no knead recipe I had that I really liked was a massive wholegrain brick of my mothers, and even that was mostly best as toast. 

Eventually, I had to give it a go though...and, it is GOOD!!!!! Look what I got...

It slices well, and makes great toast too...

So, the recipe. It was first published in the New York Times cooking supplement, and I used their recipe - it's since been reproduced in countless blogs elsewhere, so I'm adding to that lineup now!

 

You will need:

3 cups bread flour, plus extra for dusting

1/4 teaspoon instant yeast

1 1/4 teaspoon salt

1 5/8 cup water

 

1. In a large bowl, combine dry ingredients. Add water and mix until you get a sticky dough. Cover with plastic wrap and leave to prove for 12-18 hours.

2. The dough is ready when the surface is bubbly. Lightly dust a work surface with flour and scrape the dough out of the bowl. With floured hands, fold the dough over on itself, and then leave covered for fifteen minutes.

3. Using just enough flour to prevent the dough from sticking to you, gently form into a ball. Dust a cotton or linen tea towel with flour and place the dough on it, seam side down. Dust the top of the ball, and cover with a second tea towel. Leave to prove for two hours. It should double in size. If it's a cool day, it may take a little longer.

4. Half an hour before the dough has finished proving, turn oven on to 230C. Put a large covered pot - cast iron, pyrex, ceramic - in the oven to heat. When dough is ready, remove the pot and its lid, uncover the dough, slide your hand under the bottom tea towel and gently flip the dough into the pot with the seam side uppermost. Replace lid and bake for 30 minutes. Then remove the lid and bake a further 15 mins until golden.
Remove and cool on rack.

 

And, it really is that simple. What you get is a bread with a fine, moist crumb, chewy texture and thick crust. It has a slight tang due to the long, slow prove, like a very mild sourdough. I made another loaf the day before yesterday and it will probably last me about a week, unless Dragon Dad has another toast craving hit him! The batch before, I experimented with the flour and did a half/half mix of white flour and a wholemeal spelt. It took longer to prove, and I got a smaller, dryer loaf. Made wonderful toast, but I didn't enjoy it untoasted as much. Might try again with a bit less of the spelt and see if that's more to my taste. I also want to try adding some whole grain to it - my basic bread recipe, when I'm baking it regularly, is a fairly grainy, bran-y mix. 

 

If you've not made bread before, do give this a try. The only thing you really need to consider is the timing. I usually mix my dough somewhere between 5-7pm. That means I'm doing the shaping around the middle of the day the next day, and I have a finished loaf by mid to late afternoon. So, you do need to factor in 24 hours - but very little of that time is hands on, you just have to be around to do those bits. 

 

As a no gadget type (no, I do NOT have a thermomix, nor do I want one!), this is a great bread for when you want homemade bread but you just don't want to make any effort, or you're too tired - or in my case, too sore - to face the kneading involved with a regular bread dough. 

 

And then, when it gets to the toasting stage, it's time for my favourite breakfast/light lunch/no fuss dinner (!) - and yes, I'm a pig for butter...

Brain fog: Sorry, what were we talking about?

This post originally appeared on Creaky Joints in late 2015.

A little while ago, my cousin and I had a mini road trip up to the central coast north of Sydney to watch my eldest son swim his first 1500m ocean race. He’s preparing for the Noosa Triathlon – a full Olympic length race. It’s his first full length triathlon and at the beginning of the year he couldn’t swim, so it’s an awesome achievement. That ocean race was to get the monkey off his back about the 1500m swim. He swam really well, and discovered that not only will he not drown, he’ll also potentially be able to make it through well enough to be not too far behind when he picks up the 40km bike lap, and then the 10km run.

The hours in the car gave my cousin and I a lovely time for some serious catch up conversations. We talked about anything and everything, as you do, and at one point, I said to her, “There’s a blog post for Creaky Joints!” Then, I went to write it, and couldn’t for the life of me remember what the hell the topic was that we’d been talking about… So I emailed her, and got this message back: ‘Yes I do and it’s funny you ask – it was about you being forgetful lol!’

I used to pride myself on my memory, and in some ways, it’s still capable of amazing things… My earliest memory is from when I was about nine or ten months old – which is quite rare. My mother verified it after I described the scene I remembered – it was in the dining room of the place we lived when I was born, and we moved from there before I turned one.

I can remember all sorts of weird, random things from my childhood, from things I read, conversations, places I’ve been, and so on. I trained myself to memorise words (usually in a language other than English) and music for my time in an opera chorus – because we couldn’t head out onto the stage bewigged and costumed carrying the score!

It always has played some odd tricks on me though. I’m useless in exam situations – unless it’s essays. Anything else, and everything I’ve studied til I know it inside out vanishes like my head has been erased. It’s the same when I try and make a list of things – like names for invitations. Suddenly, it’s as if I have no friends, and I have to reach for my address book and work through that to make my list. Mind you, if I make a shopping list and then land at the shops without it, I can remember everything on it…but heaven help me if I didn’t make it in the first place.

Then, enter RA, and RA drugs…

Brain fog. The first time I saw that on the list of potential side effects of a drug, I laughed. It looked so bizarre in the middle of a list that was, otherwise, made up of legitimately medical sounding things. Then I started that drug. And stopped laughing. I have no memory from July 2013. None. The drug knocked me out – literally…it wasn’t sleep, it was something much more solid than sleep – for the rest of the day that I took it. After that, the rest of the week was a blur. I might have a day or so with a clearer head, but then dose day came up and it all started again. As I say, I can’t remember very much of that month. Hearing Dragon Dad describe it to other people – including my doctor – is horrifying. I couldn’t drive. I wasn’t functioning. My doctor stopped that drug, and says I can’t ever take it again.

What I’m left with though, is three other drugs that also list brain fog amongst the various potential side effects, and then there’s the effect of chronic pain, which can also impair normal cognitive function. So, basically, I’m screwed!

I find myself, all too frequently these days, mid sentence with no idea of what I was going to say next. Half way through conversations, I can completely lose track of what I have been talking about. I have conversations with people, then turn around and ask them a question, only to be looked at oddly, to have them tell me we just talked about that…

If I don’t write appointments down, I forget them. Actually, if I don’t put them in my phone calendar with a reminder set for a couple of hours ahead of the appointment time, it would be entirely possible that I’d not make it. I have forgotten appointments. I’ve turned up on the wrong days, THINKING I had an appointment, when I didn’t. I love those of my doctors and other para medical people who send reminder texts…because then I can double check that I have my reminders set up on my phone.

I do my regular blood tests on the Monday before I start a new box of my biologic drug – and I’ve had days when it’s been lunchtime on that Monday before I remember I have to go do it. I’ve even started occasionally to forget to do my biologic shot, which is set for first thing in the morning on a Tuesday.

Standing in a café trying to order a coffee and food can get really embarrassing when I can’t put the words together to do the order. My close friends and family have slowly grown accustomed to my memory failings, and are less likely, now, to be irritated. Strangers are something else again.

Forgetting things to this degree, on a regular basis, is not normal for me. It is something I’ve acquired due to both the RA and the drugs I use to treat it. It’s possibly one of the least understood effects of chronic illness, and it’s really difficult to explain to people who lack the necessary background medical knowledge. It is irritating to be on the receiving end of me having a memory moment – I get that. But it’s not something I can control. I can put checks and measures in place to try and minimise the impact on my daily life, but that I have to do that rankles.

My old memory – pre RA and these drugs – was an odd and patchy thing. But I miss it. I miss that with most things, it was very reliable, even if I made a mess of exams. I struggle with the fact that I can still remember our phone number from the house I lived in from three and a half to nine and a half, but I can’t always finish a conversation without having to be reminded of what the topic was. I hate the fact that I find myself making jokes against myself to ease a memory glitch in a conversation with someone who has no idea that there’s an actual issue. Most of all, I hate the fact that the drugs I need to treat my RA and keep it at bay are doing this, so I have no choice but to keep taking them, and dealing with this particular side effect.

May 2016

 

The brain fog persists. I managed to completely forget a rheumatologist appointment at the beginning of the year. Much grovelling ensued with the receptionist, to avoid having to pay…thankfully, they were understanding. If he's having a good day, Dragon Dad is understanding of my fuzzy brain. But on a not so good day, things can get tense. I can't help it. He knows that. But I know it frustrates him.

And an update this morning about my son – he ran the Sydney Half Marathon this morning, coming 128^th overall, from a field of 12,000 runners, and 58^th in his age division. Whether he’ll do another triathlon is questionable. For now it appears that his running and cycling are the main priorities – perhaps a race that just has those two in combination!

'Yes Optus' ... Uh...actually, NO Optus...

I swear I must be turning into a grumpy old woman... Then again, try as I might, there DO seem to be irritations piling up - things that really shouldn't cause such irritations. And it's really NOT a good look to be seen stomping through a public space muttering under my breath...but I was SO cranky...

This morning, I went to my local Westfield in order to drop into the Optus shop to pay my mobile phone bill. I had a couple of reasons for going to the actual shop and doing this face to face: 1. My preference, today, was to make a payment that was part cash and part EFTPOS - something I can't do online or over the phone, and 2. I was running precariously close to incurring a late fee for the payment, and paying at the store would be the quickest way to have the payment register in their system, thereby avoiding said extra fee.

So, I toddle on in there, having pushed myself to get to the centre early, as its carpark can be a feral nightmare, and walked into the shop only to be told that as of 1 May, payment of bills is no longer a service offered at Optus shops. I could, the girl told me brightly, pay online, over the phone, or at the post office (oh, and BTW, this centre closed its post office about a year ago - a MAJOR shopping hub with NO post office...but that's another rant for another time...). 

I didn't WANT to use any of those options, I told her. I wanted to pay in the store in person, because that's what suited me, the customer... A customer of a telco, which provides a service for which I pay, ie., a SERVICE company... When I asked her why this had come about, she informed me, equally brightly, that the decision had been made to improve digital efficiency, and therefore, customer service. I was trying VERY hard not to unleash my temper on her, as she's just the poor bunny in the front line having to communicate company policy created by those much further up the food chain than her, but it was a big ask. I could see by the look on her face that she was becoming very quickly aware of just how cranky I was getting. As I pointed out to her, this decision was NOT creating a better customer experience for me, and if I were to use the post office option, it meant getting back into my car, driving to a different suburb, and then trying to park, because the area is notorious for poor parking availability. Her smile was getting a bit brittle at that point, as she attempted to sympathise, and again trotted out the current payment options. 

They maybe need to rethink their current logo...because I didn't get a 'yes' this morning. Nor did I get an answer to my queries that I regard in any way as satisfactory.

I gave it up, stalked off to my regular cafe in the centre (muttering as I went...) and while there, paid online by bank transfer - and I just hope that I don't get charged the late fee - heads will roll if I do! 

When I got home, I looked up the post office option, out of curiousity. The reason they're not offering in store payments, remember, is to increase digital efficiency - and supposedly, reduce the carbon footprint. Payment in store was easy - I did it last month. Give the employee your phone number, they pull up the bill in their system, customer pays - takes five minutes, if that. The post office requires a printed bill - so that bill I now have emailed, to reduce paper usage, and postage costs, now needs to be printed. And then, once at the post office, there is a charge of $1.75 for the privilege of paying in person - well, in person one organisation removed. I'd REALLY like someone at Optus to attempt to explain to me how much more efficient that process is, on any number of levels. 

I also, when I got home, had a look at their customer service page on the website.

The subtext of this statement, as I read it, is summed up in the last sentence, 'However, because of the range of products and services we offer, you will also need to be comfortable with "systems"'. And herein lies the problem. For what its worth, this is not just limited to Optus. Optus, like many of the things we pay for in this modern day and age, is a service company. They provide customers with a platform for communication. For us, the customer, to continue utilising their service over that of a competitor, they need to be able to provide us with a service that offers over and above their competitors. However, in their customer service policy, the emphasis is more on the organisation servicing itself. At the entry level, where employees have contact with actual customers, all those employees can do is pass on the results of decisions which they played no part in creating. They're just the people who have to pass them on, which can't always be much fun - to whit, the girl who got me this morning... Those in customer service personnel that exist higher up are 'predominantly about leading teams, rather than dealing directly with customers' - therefore, are removed from customers, customer needs, and customer feedback. HOW is that providing the best possible service?

Someone famously once said about a new hospital, in the stage of it having been staffed with the administration staff but yet to open for business and admit patients, that the hospital worked so efficiently WITHOUT patients. It's an oxymoron of a concept, of course, but so many organisations appear to ascribe to this way of thinking. The 'service' they offer is getting to be much less about the customers, and much more about the organisation itself. We, the customers, just get in the way of their efficiency.

Talking with friends who, like me, run the gamut of the medical system on a regular basis, I hear similar stories. People who go to their doctors to update prescriptions, only to have the doctors refuse them, because they need tests to verify, or that the doctor doesn't think that it's appropriate... IF the patients in question were newly diagnosed or had a new complaint, that would be a completely valid position to take. If, as is more often the case, they are patients with long standing chronic conditions, for which they've evolved a standard of treatment, and all they need is a simple prescription to continue that, then that is the service the doctor is required to perform for said patient... Apart from anything else, the patient is still charge for the visit, whether or not they receive the treatment they need. Or the doctor who never calls back when contacted - whether that's the doctor themself not getting back to the patient, or the reception staff not relaying the message to the doctor... Either way, again, there is a service to be performed, for which we, the patients, pay and if it's not performed, why the hell are we paying?

On the weekend, Dragon Dad and I pottered around the city before and after a lavish lunch, window shopping. Again, a job in a retail store is a service position. A retail sales assistance is hired to sell the products in the store - ergo, as a customer I expect to be greeted, asked if I want any assistance, and then served when I do. The number of stores we wandered in and out of where that was completely absent boggled my brain - particularly given that a number of them were at the prestigious end of the spectrum, where you'd really expect to be taken good care of, because SHOULD the customer be planning to spend money, it will be a LOT of money.

Service appears to be a dying art. I can't see that as a good thing.

I sent a message to Optus via their Facebook page when I got home. Their page says that they 'typically' reply within a day. I'll be interested to hear whether that actually happens...not that I'm expecting them to come back with anything particularly constructive.

Edited to add:

Optus replied... Most frustrations. On the one hand, they tell me that they want to offer me the most convenient option to pay my bill. In the same breath, they just reiterate the now existing options - which don't suit as well... Not really surprised though - because ultimately, it's NOT about me, the customer, is it?