Rheumatoid Arthritis and the weather - how does it affect you?

Last night was the first night in many that the house was cool enough to sleep properly - and after turfing the cats from the bedroom sometime before dawn (when THEY thought it was time to get up) I slept until the garbage trucks woke me just before 9.30 - most unusual for me to sleep that late... Today is blessedly cool after many days of extreme temperatures. And I ache.

I had fairly usual pain levels during the heat wave, although the lack of sleep and general lethargy extreme heat brings made the days and nights difficult. And probably by tomorrow, I'll be back to my 'normal' pain levels again. But it's the big, sudden temperature drop that is making me very uncomfortable today. My brain is with me - courtesy of the extra sleep last night - but my body is most unhappy.

It's something I've been struggling with since the interstate move, and has brought memories of similar ups and downs that were my norm last time I lived this far south, prior to the move to Sydney. Sydney can, and does, get very hot - and extremely humid. But it tends to build up gradually to extremes, and drop a little more gradually back to normal too. There are odd drops, but they're less frequent. Here in Melbourne, it's quite normal for the daily temperatures to shift ten to fifteen degrees from one day to the next and that plays havoc with my RA. 

People say to me, fairly constantly, through the winter, "This cold weather must make your arthritis so much worse, you poor thing," and in summer, "You must be feeling so much better now it's hot." Thing is, as long as the temperature is reasonably consistent and any shift from hot to cold happens gradually, I'm fine. In general, I prefer the winter to hot summers - it's relatively easy to keep warm, but it's much harder to stay comfortable in the heat. The extreme and abrupt changes, particularly those that go from hot to cold by a big margin, are what give me the most grief. The next week, while not getting as hot overall, will give me two big drops, so I'm guessing it's going to all stay a bit uncomfortable as there won't be enough days in a row where it's consistent enough to really adjust.

What happens with everyone else? How do you manage with weather changes and temperatures RA-Wise?

When something else happens on top of Rheumatoid Arthritis

One of the nastier characteristics of RA is the chronic pain, which can vary from person to person, depending on the level of disease activity and how many joints are involved. At this stage, my RA is sort of under control with both DMARDs and the biologic, but it's certainly not in remission, and I'm still taking significantly large doses of pain meds regularly, in order to maintain function and some kind of a life. So, it's been possible to get that to a reasonably level thing, day to day - not pain free, but with it damped down enough to get out and do something each day so I don't go completely nuts staring at the wall. That's all well and good, but it all goes to hell in a handcart when something else goes wrong. 

When I was eighteen, well before any hint of RA, my parents owned a house in a seaside suburb of the city where I went to university. It had a pool in the backyard - the first time we'd ever lived with a pool. It wasn't fancy - an above ground pool that had been set into a deck which, because the block sloped a little bit, was at the level of the patio outside the back of the house. It wasn't very deep either, but deep enough to splash around in and cool off in the stinking summers that happen there. NOT deep enough to tumble in off the edge and land headfirst on the bottom without damage. 

(Not my neck...)

It could have been worse. I could have broken my neck. I didn't, but I did all sorts of soft tissue damage that took a very long time to heal, and even then, not completely. That's the thing with soft tissue damage. Often, a cleanly broken bone (perhaps not in the neck!) is a better situation than wrecked tendons and ligaments. Set well, bones usually heal completely - not so the soft tissue. The very young physio I saw at the time was a bit awkward, as was I at eighteen. Trying to explain it, he said that my build was part of the problem - I'm tall, but very finely boned, so my vertebrae don't hold together as tightly as they might, and with the damage to the ligaments and tendons, that was exacerbated. I was - as he put it - 'loose'. It's been a good story since, but at the time it was odds on which of us was blushing the most! Ultimately, the only thing I could do was keep the muscles as strong as possible, to make up for the damage done in the accident. 

I spent time in and out of soft collars, as it would go out horribly easily and then jam. I saw so many physiotherapists, massage therapists, different doctors. Nothing really helped. And then, years later - post the RA diagnosis, but while the disease was still relatively mild - I was rear ended in traffic and had a bad whiplash injury. I spent months in a collar that time. I found a really good physio who managed to settle it, eventually, but the damage was well and truly done, and it's been an ongoing issue ever since. 

There's no predictability with it - it can be good for ages, and then I wake up one morning and I can't move. The pain is excruciating - sending daggers down my arms and through my thoracic area, and I can't turn my head. One of the early times it happened in Sydney, I got lucky. Rang work to say I couldn't come in, and called the physio practice I'd been too before for a different injury, only I got a different practitioner. And she did something no other physio had ever done. She got it sorted and mobile in record time, AND she gave me exercises I could do to prevent it jamming again. If I caught it at the niggling stage, I could do those, and settle it again. There was only one other time that I woke up with it completely jammed, and again, she fixed it, and told me to do the exercises regularly. 

I haven't been doing them. I forget... And the day before yesterday I woke up and was in trouble. It's been two days now. I'm doing the exercises hourly, and they ease it a bit each time, but I think it's jamming anyway. Which means I'll need to find another physio here... I have a referral from an acquaintance for one who sounds as if he works similarly to my miracle worker. Time to find out.

In the meantime, I have limited movement, and a lot of pain. Severe, acute pain that's nauseating - literally. If I move wrong, it's blinding and sharp and my stomach heaves. That's the thing with pain - and not many people understand it. There's not a single type of pain. There are many different types of pain, and given that I have chronic pain from the RA - and even with that, there are different types of pain - having this happen is a nasty reminder that there are yet more in the pain arsenal that can bring me undone. I could ramp my usual pain meds right up - but the reality is, it's unlikely that they'd help this situation with my neck, because I have things out of place, and nerves being crunched, so every time I move, it's going to happen - I'd only not feel it if I knocked myself out completely, which wouldn't really be a sensible thing to do! 

It WILL pass. I know that. It's just not passing very quickly, and is obviously going to require intervention. At least the calendar is going back to normal, and I have half a chance of finding the phsyio in when I call. I hope so. I can't take this neck to just anyone. I'd love a teleport so I could whizz back to Sydney quickly to see my miracle worker - and talk knitting, because that's what we do - but that's not possible. Hopefully, they can talk - she and this new guy. 

Who is The Original Dragon Mother?

I've noticed over the last month or so that I'm suddenly getting a lot more traffic on the blog - and I really do mean a LOT! Somewhere along the line, it's moved up on search engine pages or something, and there are a lot more people following along - here and on the Facebook page. 

It did strike me, especially since I've just jumped into Fat Mum Slim's Photo a Day challenge, so the Facebook page now has photos going up regularly, that newcomers might be curious as to the somewhat eclectic nature of the blog and FB page... 

Initially, I started the blog to give myself a place to explore parenting concepts as I saw them changing, quite some time after my own two boys were no longer living with me, but after I'd acquired a third boy, in the person of Dragon Dad's son. I'd always felt a bit out of step with my parenting style with my own children, being - as my friends often told me - really old-fashioned...and they weren't exactly being complimentary! Coming face to face, in my own home - after Dragon Dad and I moved in together - with another adolescent who was the product of a very different parenting style to my own was, at times, challenging. Finding my own way through that to be a step parent, without just falling in with decisions that I sometimes disagreed with was very difficult. So, I started the blog. I had to vent SOMEWHERE. Along the way, my No.2 son stumbled across it, and we had some interesting conversations regarding the content of some posts - as can be imagined. The three boys are now 31, 25 and 21, so definitely not children any more. But you never stop being a parent, and I don't think aging and observing younger children around us necessarily changes our parenting perspectives. So I do continue to write about parenting - from the perspective of my own experience and what I see now.

Then I got involved with chronic illness communities online. A 24 year 'veteran' of Rheumatoid Arthritis, initially mild, and now severe, I found I had things to say in that context. My first post that touched on RA was about parenting when you have a chronic illness, because I kept seeing posts from women, particularly, who still had kids at home and were struggling to be the parents they thought they 'should' be...and felt they were letting their children down by being sick. Eventually, I had to write about that. My youngest knows nothing different - I was diagnosed while he was still a baby. No.1 had to make some adjustments - he was a bit over 7 at that time. But I don't believe they were deprived in their childhoods due to my illness. That post lead to more RA themed posts, and then I participated in the RA Blog Week, hosted by my good online friend Rick's blog, RA Diabetes. That lead to blogging for Creaky Joints for a while, and then when I finished there, I figured I'd keep going, sometimes exploring RA based issues in the course of my personal writing. 

With a past that includes professional cooking, I'm also a bit of a foodie. So there have been the odd recipe and food-based posts too. They're fun. Sometimes I've written them due to requests from friends and readers, but often it's just an impulse when something feels like it should go here. 

Ultimately, this is the place where I do my personal writing. Any paid work I get as a writer tends to be fairly humdrum. Unfortunately, in the current financial climate, the arts journals where I used to get a lot of work published can't afford to pay freelance writers, so outside writing for those is supplied largely by those who can afford to write for free - I can't. But it means that the subject matter here is growing more diverse, and that's fine. We're none of us single-faceted. I am a parent, yes, I have RA, and yes, I'm a foodie, but none of those things define me entirely. I have other interests and other drivers, and as the blog continues, I daresay it will grow yet more diverse. There are other bloggers who do focus solely on those things, and that's fine, and many of them are doing a marvelous job, but it's not a direction I want to take. It's all in the interests of being well-rounded, and balanced. The blog will continue to grow ever more eclectic, much like my decorating, wardrobe and book collection!

So, welcome to all the newcomers - it's lovely to have you here, and please do comment if you feel moved to do so. It's always nice to have a conversation.

New Year and not making resolutions

I'm really not one for making resolutions. I don't know why. Maybe something to do with my lack of interest in following something that so many people do, rather than finding my own way - I can be a tad perverse in that way! Accordingly, Dragon Dad and I had a very low key evening last night, and drank some excellent aged grenache with our home made pizza while watching DVD, before tucking ourselves into bed well before midnight, without making a single resolution! 

However, it IS a good time to reflect and consider the year ahead - how I might choose to approach it; things to shrug off, things to change, things to rethink, things to create, etc. So, in an extremely lazy fashion, I am doing a bit of that. One thing I find that I do - or rather, don't do - which is a cause for much self castigation is to not draw every day. 

I had a lecturer in art school with whom I really connected. Tragically, for his family, myself and so many others, he died suddenly before I finished my degree, and before we reached what was my final unit of life drawing. But he left me with many things. My sense of play with media, and not getting bogged down by how one 'should' approach different materials. The need to challenge myself when I draw - think around possible constraints, to make the most of a page, push past what could be considered the limitations of particular materials and/or circumstances. To remember that drawing isn't so much about what's in your hand as what you see, and remembering to really look at things - see the shapes, the light, the colours, the textures... That it should be fun! And most importantly, that it should be a daily activity. 

I was lucky enough to have him as my teacher in a range of different studio areas, including one where on the first day, he presented us all with a brand new hard cover drawing journal. The subject itself was media studies, but the journal was intended not so much as a record of class activities as a tool to help create an actual practice. He informed us that he wanted to see something on the pages that showed that we drew something EVERY DAY. He didn't care what it was - it could be as simple as mucking around with some new chalks, pencils, or other drawing materials. What was important was that we did it every day. To that end, ever since, I've carried a tiny A6 sketchbook in whatever constituted my regular handbag. And a mix of felt tip pens and pencils that roll around in the bottom of the bag along with the spare change, old receipts, tissues, and other bits and pieces. Every time I dig in the bag for something I see it, and hear Bruce saying we must draw every day. But I don't. Because, life. And the every day excuses we all make for not doing things. 

So, I've made a commitment to do a daily photo challenge activity that's hosted by blogger Fat Mum Slim. I figure, it's a daily prompt that will make me think creatively about what I can do with the limitations of an iPhone camera - that being my only digital camera. And I'm thinking that alongside the photos, I can make a drawing each day. I won't be posting them all here on the blog, but if you care to hop over to The Original Dragon Mother Facebook page, I'll post the daily photos there. And I'll post the drawings on my Facebook art page. So, if you're interested in following along, they're the places to be. 

For me, this stuff is about self discipline - which is something I find all too easy to let go. And that's just me being lazy. Lazy leads to letting far too many important things go - things that can make daily life much more interesting, challenging and, ultimately, fulfilling. And I have no excuse, really. I don't work for anyone any more. The paid work I do do is freelance, so it's on my own time. Ergo, I have more than enough opportunity to look at how I spend the rest of my time and find ways to be so much more productive - which will make for a much happier and more satisfied me. And give me much more to think and talk about with Dragon Dad at the end of the day - rather than just my online stuff! 

So, I've started the Photo a Day Challenge with today's prompt, which is 'my fave colour' and because I'm kicking it off in conjunction with this post, I'll pop in in here - because I can! From tomorrow on though, go check out my art page for what's to come.

 

Rheumatoid Arthritis: When your team gets it right

I've written in other posts about the importance of creating a good medical team to deal with the multitude of issues that are part of life with chronic illness. I wrote recently about when someone in your team gets it wrong, and the impact that can have. On that particular occasion, the GP got it totally wrong. I needed those steroid shots into my shoulders, because it's a mechanical issue. Definitely NOT the nerve pain that he insisted it likely was - and for which he prescribed one of the anti-depressants that are currently in use for some types of pain, but I don't HAVE nerve pain. 

Last week, however, and today, part of my team got it very right. Last Tuesday I was due my scheduled infusion of my biologic drug. They happen every four weeks, and for some reason best known to the drug company, it can take up to a week to courier the drug from their base to the pharmacy - which, given I've been told their base is here in the city where I live, seems utterly ridiculous to me. Before we moved, that same drug took two to three days, maximum, to reach the pharmacy - with interstate distances involved. I got the script into the pharmacy a full week ahead of the infusion, but when I got there on the day before to collect it, it wasn't there. A call by the pharmacist to the drug company resulted in the news that it would arrive 'sometime between 9 and 5 on the Tuesday. Utterly useless when I was due at the hospital at 10am on the Tuesday for the infusion. 

The previous week had been one of speedy deterioration as the infusions don't last all the way through the four week period. Sometime during that last week, I start to go downhill, and this time with my dodgy shoulders added in, I wasn't in a good state at all. Getting that news was the last straw and I lost it. In the pharmacy on a busy day when it was full of strangers who were treated to the sight of me falling apart. The staff moved fast and the pharmacist I've dealt with most there had me whisked into a chair behind a screen and supplied with tissues and a drink of cold water before too many people were aware of my personal drama! Once I'd pulled myself together a bit, she got back on the phone and called the hospital to reschedule the infusion for the Wednesday, and then came back to me to get my address and phone number and promise that they would deliver the drug to me at home as soon as it arrived, to save me any further physical effort. 

On the Tuesday I received three phone calls, appraising me of the progress of the couriers, and then the last call to let me know the pharmacist was on her way. When she arrived, she presented me, along with the cold pack of my drugs, with a bag of gift wrapped gifts - little things - hand cream, perfume, a small candle holder. But the thought behind them was enormous - and for the second time in two days, I was in tears... It was the junior pharmacist who did the delivery, and she was most embarrassed by my tears, poor thing, but I was so taken aback by the gesture, and the care demonstrated that went over and above what was required. 

I had the infusion on the Wednesday, and it kicked in a few days later, and I've been feeling quite a bit better. Today, at the suggestion of the pharmacist, I headed in with all my scripts to see what could be filled before the end of the year. For those not in Australia, the Pharmaceutical Benefits Scheme (PBS), a government funded organisation which subsidises certain medications, has a safety net that further subsidises medications on their list once an individual has paid out a specific amount over the course of a year. Given the number of meds I'm on now, I reached that limit in mid-October this year, so my meds have been MUCH cheaper over the last couple of months. Today's exercise was to fill as many scripts as possible before I got back to square one on 1 January. So, for the amount I usually pay (subsidised) for my biologic, I got ALL my scripts filled today, bar the bio, because that's not due to be filled for a couple of weeks. The pharmacist showed me their calendar - it has 'ORDER ORENCIA' printed on it each month in thick black pen a full TWO weeks ahead of each infusion to guarantee that what happened last week doesn't happen again.

I also saw my new rheumatologist for the first time in late November. Unlike the GP, he checked out my shoulders thoroughly, and gave me a steroid shot in the right one, saying to see how I went with that and then if it was effective, he'd do the left one. It was pretty miraculous, I have to say, but I wasn't able to get back in to see him for the second shot. However, when I went in to see the GP for other scripts, and asked if he'd got the letter from the rheumatologist, he was very quick to offer to do the second shot himself - having seen that the rheumatologist had done the first one. Extra bonus was that the only extra I had to pay was for the dressing - which wasn't the case at the rheumatologist, where it cost me $80 extra (NOT covered by Medicare or the PBS)  for the steroid. Have to wonder though, how much less physical grief I'd have had if the GP had just done the shots in the first place when I saw him back at the beginning of November!

These relationships with doctors, pharmacists and other para-medical personnel are vital when you have a chronic illness. I pay a gap when I see the GP because the surgery doesn't bulk bill. These days, it's much harder to find a surgery that does bulk bill, and all too often, those that do are the mega clinics where you can't guarantee seeing the same doctor each time - and that's just not feasible for me, when I need someone who KNOWS my history, and knows ME. It was one of my biggest stresses about our interstate move, knowing I'd have to start over, first finding the right people, and then building the relationships. It takes time. And it's not easy. And it's effort upon effort when you're unwell. But I think I'm getting there. I've certainly cracked it with the pharmacy! 

'Happy Holidays' - political correctness gone overboard, or inclusive?

It's that time of year again. The shops are full of Christmas decorations, the muzak is Christmas carols, and on FB there are memes are appearing that express irritation (at best) at the use of 'Happy Holidays' as the 'fashionable' greeting, rather than 'Merry Christmas.'

Here in Australia, I suspect that a big part of the aversion to the Happy Holidays greeting is that it has its origins in the USA. There is - and this began long before the presidential election in November - a real anti movement against the encroachment of American cultural mores becoming embedded into Australian culture. For myself, a big part of that is the plethora of American television shows - which I see more of because Dragon Dad loves a lot of them, while I really don't. Odd ones I do, but for the most part, I'd love to see more locally made programs, and definitely more of the quality television we used to have from the BBC which appears to be one of the losses to the incursion of American TV. That's probably the most overt thing, but there are many more, not to mention a sense of unease about some of the political decisions that have been made over time due to the terms of our alliance with the US.

There is also a feeling among many people I talk with that political correctness is swinging to extremes, and there are things that perhaps need to be discussed that aren't even broached anymore for fear that people will be called out for saying the 'wrong' thing. So, there are two things going on, really, and as far as popular culture is concerned, it does seem to come out at the end of the year when the Christmas frenzy starts to go overboard.

For myself, I'm Jewish, so I don't celebrate Christmas. So, for me, being wished Happy Holidays definitely feels inclusive. It means I don't find myself in a position of feeling as if I ought to educate people about Chanukah - which this year, begins the evening of the 24th of December. I don't feel as if I have to insist that, no, it's NOT the 'Jewish Christmas' on the odd occasions when I make the choice to explain and hit someone who doesn't know much about Judaism. I do feel that the person wishing me Happy Holidays has thought about the fact that Christmas isn't the only religious festival that happens around this time of the year. 

People do ask what my family does 'for' Christmas. Well, we don't do anything - see above comment about not celebrating Christmas. But we do get together as a family, depending on who's around and what various family members are up to. This year, Dragon Dad's father is visiting and we'll be having lunch at a restaurant that we like. We've discussed perhaps inviting those friends that are free to come and celebrate lighting the first candle on the chanukiah and eat latkes with us - we haven't got as far as doing anything about that yet. 

So, whatever your particular tradition happens to be, I'll wish you Happy Holidays, and hope that by using a greeting that covers a variety of occasions that it will be received with the goodwill with which it is offered.

 

Book: Chronic Christmas by Lene Andersen

I don't usually write book reviews here - I reserve those for my other blog, Books Anonymous. However, the author, Lene Andersen, is a blogger I met online via the network of bloggers who write about Rheumatoid Arthritis - initially via her blog, The Seated View. She was also on Creaky Joints, and then I found her pages on Facebook. She's now someone I see very much as a colleague and friend - albeit long distance, as she's in Canada and I'm here in Australia. Lene contacted me and asked if I'd read and review her new book, Chronic Christmas, so here it is. 

The book had its beginnings in blog posts from The Seated View, where Lene wrote a series of posts about dealing with the additional pressures of special holidays like Christmas, and the ways they can impact on people with a chronic illness. From there, the concept developed into a book that addresses the potential issues for both the person with a chronic illness and those around that person - partners, family, friends and carers. 

Living with a chronic illness, especially one of those increasingly known as 'invisible illnesses,' can be stressful and challenging at the best of times. Factor in the pressures of particular holidays and you have a recipe for all sorts of physical emotional mayhem. 

Chronic Christmas takes the form of an Advent Calendar. Instead of little windows you open up to find chocolates or other treats, each chapter deals with something specific to the run up towards Christmas Day. Topics range from Christmas shopping, to various social events, catering for said social events, family tensions and time out. The chapters are divided into two sections - one addressing the person with the illness, and the second addressing the person who is looking after the person with the illness (who may or may not be an actual carer). There are strategies, possible solutions to specific problems, lots of lateral thinking and not a little humour in each chapter - headed with the date in December, rather than actual chapter numbers. 

What really stood out for me, the further I read, was that the common ground with each suggestion was that they're all good, old-fashioned, home grown ideas that many of us (myself included) speak, write, or complain about disappearing from today's busy world.  Simple things like putting down all the 'shoulds' for a while and taking time out to play - go for a walk, make snowmen (maybe build sandcastles if you're in my neck of the woods!), play cards, etc - anything that means taking time to just BE in the company of others having simple fun. The practical suggestions are just that - practical. Outsourcing various tasks, giving gifts of time, making room for people, and - most importantly - teaming up to achieve the desired goals. 

I had to laugh when I got to the last chapter - which wasn't the 25th of December. It was the 31st of December, and it was constructed as a single entry - and it was what I'd been thinking all along as I read the book. ALL the things Lene has written about are practices that can well be incorporated into everyday living - whether you're the person with the chronic illness, or the one on the sidelines trying to figure out how best you can offer appropriate help to that person. Being sick can be incredibly isolating. It can be lonely and frustrating. There can be a lot of grief about what is lost of a former life before the illness took over. Also, there can be a lot of practical challenges due to mobility issues, pain, fatigue and the like. The themes running through Chronic Christmas point to strategies that are about living life - living fully, regardless of the restrictions that can be inherent with chronic illness. They're about being creative and finding a way through, being part of communities - family, friendship groups, work environments. It all takes energy - even for people who are well, and all the more when they're not, and this book puts a huge emphasis how succeeding is the result of collaborating with people - it can't be done alone. It takes everyone remembering - the chronically ill person included - that each life is more than just the illness. As Lene says, we have interests, hobbies, likes and dislikes just as healthy people do, which reach far beyond the constraints of illness. 

It's an easy read, and would make a great gift for family members, friends and colleagues of someone who is chronically ill. It's also a handy reminder for someone who is ill that there are ways to tackle what can look insurmountable - ie, the expectations and activities that pertain to Christmas, particularly, in this instance, but which are applicable to other situations, and just daily life too.

Buy it here, but bear in mind that the paperback version is only available on the US, Canada and UK Amazon pages, but the kindle version is available on all of them:

https://www.amazon.com/Chronic-Christmas-Surviving-Holidays-Illness/dp/0991858670/