Tuesday, 25 September 2018

Chronic Illness - Buzz Words and Trends in Self Care

Mindfulness What does mindfulness mean to you and how can it help as we live with our autoimmune condition?

Can I tell you a little secret? I have an almost instant allergic-like reaction to certain words... They're usually the latest trendy buzz words - like mindfulness. Gratitude is another. It's not limited to words. You know when there's a massive amount of hype about something? A new book, a movie, a place to go...? That will be the book I DON'T buy, the movie I DON'T see, and the place I DON'T go... I know it's perverse, and I know it's a bit ridiculous, but there you go - it's how I react. 

So, I saw that this prompt had made it through the voting process, and wasn't happy. I thought to write today on one of the wild card topics. But I wasn't overly grabbed by those either, as they don't apply so much to the situation here in Australia in the way they do in the States. *sigh* What to do...? 

There's also the whole debate around analgesia and the beginnings of a move here in Australia away from opioids as a first option for treating severe pain - in exchange for cognitive therapy, meditation, para-medical treatments such as massage and physiotherapy, and...MINDFULNESS. And, I'm sorry, but if someone tells me they're going to take my pain meds away from me and exchange them for those alternatives, they're gong to have a fight on their hands! Because despite what all the people who are currently making hell for chronic pain patients say, opioids DO work for the chronic pain caused by a degenerative, inflammatory disease.

So I Googled 'mindfulness' and found an Australian government website with a short - 2 minute read - you can read it HERE.

So, here's the thing...according to that definition, I already practice mindfulness. Who'd a thunk?! 

Back in the day, in the early months and years of having RA, I used to journal with a friend. She also had autoimmune illnesses, and like me, is an artist. So we journalled, often together, and as well as writing, we drew and painted in our journals, sometimes showing each other what we'd done, and talking about what the imagery meant for us. We also talked about the process of journalling, and how that made us feel - what was helpful, what wasn't. And the drawings and paintings - how THEY made us feel. Quite often, for both of us, they were a fairly unconscious process - the antithesis of mindfulness. Neither of us ever planned them, per se... There was no consistency as to whether we did the art work before or after writing. And for both of us, most of the time the imagery that emerged was pretty spontaneous. Sometimes, that could be a pretty spooky experience. And the finished imagery was often quite confronting. 
Into the Vortex, Mixed media on cartidge paper, 20.11.94
Journalling is an activity that's often recommended for people with chronic illness, as a means to get emotional stuff that we may find difficult to talk about OUT of our heads and to a place where we can perhaps process it a bit better. In a sense, blogging has become that for me, when I AM blogging... Like blogging, journalling requires commitment - making time each day to do it. Beginning the process can be difficult, because it can feel selfish, and self indulgent - especially if writing isn't your thing, or you've not typically taken time out specifically for yourself. 

It's a MINDFUL process though, journalling, and blogging. It requires self examination, and taking time to stop and monitor where we're at. And while I might not always be writing regularly, the past habit of journalling and blogging means that that self monitoring process is something that I do - whether I'm writing the stuff down or not. 

When I draw and paint, the activity takes me to a different space in my head. I did an activity earlier this year shortly after signing up to Instagram - after MUCH pressure from a number of artist friends. Those same friends then started encouraging me to do the #100DayProject. It's an international online event facilitated by a pair of artists whose names I can't recall at the minute, and I can't remember - #brainfog - how long it's been running. Essentially, it's a creativity project. You choose a creative endeavour - it can be absolutely anything, and the diversity among the participants was one of the wonderful things about being part of the event - and commit to do something with that EVERY DAY for 100 days, and post with the hashtag so everyone can see each other's work. 

We're VERY broke at present. Part of the stuff I've not been blogging about for almost a year has been Dragon Dad's changing work situation - which is still in a state of flux. Needless to say, that's meant our financial situation has become increasingly precarious, and at this point, the only thing that's kept us in our home, fed and surviving, has been help from some very generous friends. So, for me, embarking on a creative project over a decent span of time dictated very much what I could commit to in terms of materials - art materials aren't cheap, and there just isn't money for anything beyond absolute essentials. But I had pencils, and I had lots of art journals that weren't full, so I decided on graphite drawing as my process. 

Every afternoon - most days...there were some glitches along the way, and I also got back into the habit of carrying a wee journal and clutch pencils in my bag and did some drawing while out and about - I'd settle down to draw. And let me tell you, going back to basics just armed with a pencil is perhaps one of the toughest things an artist can do. There is NOWHERE to hide, no colour to distract...just the graphite on the white paper and a drawing of an object that might or might not have worked! 

The mental focus required is immense, and I found myself starting, after the first couple of weeks, to feel that my day had lost some necessary balance if I didn't draw. Most of the time, I was, essentially, working with still life. I'd scrounge around the house looking for something to draw, drop it onto a board on the table, then sit and work away until I'd rendered the object to my satisfaction. I drew loads of fruit and vegetables, my shoes, sewing oddments like old cotton reels. The day I decided to draw some knitting I had on the go - well, that might not have been the most sensible decision... The cats - when they were sleeping. Had to be quick with those, because the little blighters could FEEL my attention on them, I'm sure, and would invariably move halfway through. I am right handed, so my left hand was always there if I couldn't think of anything else. And if I was out, I'd draw the people around me in cafes and markets.
#100DayProject drawings, graphite on cartridge
Drawing like that is very much about being in the moment. You have to coordinate hand and eye movements to take what you see and lay it down on the paper. It's something I've done since I was a child, and then reinforced with formal training at art school. It informs the way I look at the world. When I look at what's around me, I don't just see people, scenery, buildings, stuff.... I see shapes, lines, colours, shadows, patterns. 

I'm also a photographer. I participate in a daily photography challenge via a group on Facebook. Ever day we have a prompt to use, and ultimately, it means for all of us - and this is a thing that gets discussed in comment threads in the group - we see the world around us much more acutely than we did. For me, it's another layer of looking on top of the way I was already looking at things. Now, in addition to the shapes, lines, colours, shadows and patterns, I'm framing things. I photograph within square formats, for the most part - something I started doing after signing up to Instagram, as rectangles get amputated there...and even on FB, large photos get compressed by the site. But I also like the square as a tool. It's EASY to offset an object in a rectangular format and achieve a balance of the negative space. A square, because it's a perfectly even shape already, makes creating asymmetry within it much more challenging, and I do love a challenge. 
Selection of photos from this year's Photo a Day  

So, as I've often discovered in the past when I've refused to read that book everyone's talking about, or go see that movie that is making waves, I find that my daily practice as a creative - whether I'm writing, drawing or taking photographs - has instilled in me, by default, a practice that is akin to mindfulness... How very humbling that feels. 

And what does that do for my RA? Well, I write because I've always written - academically, professionally and for myself. It satisfies something in me to craft a story that sometimes others will read, and sometimes not. That's not the point. I'm MAKING something. I joined the photography group to give myself a daily practice, at a time when I felt quite lost and didn't have anything like that happening. I also found wonderful people in that group, who have become good friends, some of whom I've been able to meet face to face. And it was some of those people who pressured me onto Instagram, and then into the #100DayProject (I have to add, incidentally, NONE of them did the project...so I was left out there like a shag on a rock!!). And that's lead to me beginning a rebuild of my professional art practice.

All of these things have brought me back to daily practices of creating, back to myself and the person I am - the person I was pre-RA and the person I STILL am, despite the disease and the changes it's brought to my life. They offer distraction. They make me get up, get dressed, and leave the house, in search of things to photograph and draw and write about that are beyond the confines of our home. And they are mindful practices, in and of themselves that make me be very aware of what's going on around me and how I respond to that. 

It may not be the mindfulness that's touted as an alternative/complimentary mode of treating chronic pain. But it's MY mindfulness. It's the stuff I do to make sense of my days. And the stuff I do that gives me a reason to keep going. So I don't particularly care if this is a somewhat unorthodox take on the concept. It's working for me. And that's enough.

Monday, 24 September 2018

Rheumatoid Arthritis - Tips and Strategies for Living Well

 TipsHow do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.

I've had RA for twenty-six years now. I look at that number and it boggles my brain, to be honest. I've been sick for nearly half my whole life... As a concept, that just seems ridiculous - but unfortunately, it's my reality, as it is for far too many people.

What twenty-six years gives me though, is two and a half decades of experience living with this disease. On social media, in some of the support groups, they call people like me veterans...and for good reason. 

Mind you, for me it's a bit complex as there have been two distinct phases of my disease - the long, slow deterioration of mild disease that just chugged along in the background, and only really completely sidelined me if I'd been stupid enough to forget it was there and push myself to limits that would have been an issue for someone completely healthy. And then there's post 2013, and sudden severe and very active disease that can totally floor me for no other reason than the normal ups and downs of the disease itself. 

As I type, my hands are screaming at me. I DID make more bread than I usually do over the weekend, given the meals I cooked, and two of the batches did require a little kneading - our house bread doesn't...check out THIS POST for a brilliant bread hack if you want to make your own and it's the kneading that's stopping you!

I digress... 

I'm going, for the purposes of this post, to address this more recent phase, as the reality of the changes since 2013 have felt, at times, as if I've been newly diagnosed. I've had ALL of the fears and panics that I had back in 1992 with the original diagnosis, and this time, they've proven to have far more foundation than they did back then.

I freelance. I was writing professionally alongside my job - something I'd been doing since 2004. So I have continued to do that, scratching around for any paid opportunity I can find. It's work I can do in my PJs, and even in bed on a bad day. I make my own schedule. When, as they are today, my hands are particularly bad, I use compression gloves (note to self, go and get them on NOW!) and I work in small bursts.

So, if working a regular job is an issue for you, look to your skills. What are the things you do well - in the workplace and recreationally? Is there a way you can turn that into a business or a freelancing activity so that you can work flexibly from home? If you think you can, go for it. In addition to my writing, I'm also slowly rebuilding my art practice, and hopefully that will begin to pay off as I find more places to exhibit and hopefully start to pick up commission work. 

Household stuff
I'm a creative - I don't find housework a creative activity...so it's never been a huge priority for me to have a spotless house. Dragon Dad is a bit of a neat freak, and really likes things tidy, so it's been a huge learning experience for us to settle into a compromise situation that doesn't drive us both bonkers. We're also living in a very small house that doesn't have space for me to have a workroom, so my desk is in a corner of the living room, and my art studio is our dining table... Creative chaos, I call it - he often calls it a mess! 

DON'T sweat the small stuff. Outsource, if you can afford it. Get a cleaner to do the work that is painful and exhausting so you have energy for other activities that bring you joy (unless you're one of those odd souls who likes cleaning, in which case, just go for it!). We can't afford a cleaner. So, Dragon Dad does all the heavy cleaning. I can, and do, sweep the kitchen floor every day or so. Any more than that will render my hands useless, and then I can't write or draw. Not negotiable. So he does that. He hates washing. I do that - cos the machine and the weather do all the real work of cleaning and drying the clothes. 

I do most of the cooking. I've simplified a lot of things I do... Also, we are eating very simply because we just don't have the money for all the good stuff right now, so all my cucina povera skills from years living as a sole parent are on in full force. 

When it comes to food - EAT WELL. I can't stress this enough. Our bodies are under siege from the disease. We do ourselves no favours at all by eating badly - and by badly, I mean taking too many shortcuts with packaged food, skipping meals, and not drinking enough water. There's no reason at all, even on a tight budget, and when we feel like crap, for not eating well. And eating fresh. I wrote THIS POST some time back with a bunch of my food strategies to cover the times when I'm really not feeling up to cooking much, but that don't short change us on either nutrition or flavour.

A household is a collection of people. For us, it's just the two of us. Back in the day it was my two boys and me. It doesn't matter how many or how few people live in your house, it should be a collective. It should NEVER be the job of a single person to be responsible for every part of maintaining it. For those reading how have kids at home, a browse across the whole blog will show you that I believe kids should be contributing at whatever level they can manage from the get go. Little children can wash dishes, pick up after themselves, peel vegetables, pair socks, etc. Teach them to cook and be involved in meal prep - they should be able to put a meal together on their own by the time they hit their teens, if not before. Similarly, they can learn to weed and grow vegetables, and older bigger kids can mow lawns and wash cars. They can, incrementally, learn the skills to be completely responsible for their own bed linen and clothes - changing and washing sheets and doing their own laundry. And they can run vacuum cleaners and push a broom. Remember - if they can run a smart phone, they can do ANY of this stuff, and there's no reason on earth why they shouldn't be contributing to the household that supports them. And with partners, the household should be a shared responsibility. So, negotiate between you who does what, according to what you can and can't manage and the things you like and dislike doing. Chances are, it'll fall relatively evenly down the middle. As far as childcare go, if you're partnered and have children, you are both parents... Dad's don't babysit, they parent. So share the load.

Friends and family
These are the people you'd think will always have your back, and in an ideal world, they would. Unfortunately, our world is far from ideal, and I've heard some awful stories from people who've lost friends, and have very difficult times with family members with issues around being sick. I have to say, I've been very fortunate for the most part in that regard, and haven't lost too many people. I HAVE weeded people out though...that's sometimes been necessary. Any relationship that causes more stress than joy is going to take a toll, so if there are people like that in our lives, we need to think seriously about whether that's good for us or not, and take appropriate steps. 

One critically important thing though - and I MUST address this, because I see SO many comments in the support groups around this, and have far too many conversations about it with various people. 


I hear - all the time - people, particularly women, saying they feel bad for not being the mum they 'should' be, or the wife, partner, whatever... It's NOT your fault that you're sick. You got sick, you didn't make yourself sick to make other people's lives difficult. So, in the first instant, there's no need to feel guilty about being sick, cos you can't help getting sick. And secondly, anyone who gives you grief about their lives being more difficult because you're sick is an arsehole. And it's THAT simple. because thay's a cheap shot at you, when they don't have the decency to deal with how they're feeling about whatever prompted the cheap shot, which is just bad behaviour, and there's no excuse for that. Anyone that does that to you regularly is a major arsehole and shouldn't be in your life. 

Be OK with saying no if you can't manage something. If you can't do it, you can't do it and that's really all there is to it. And it's not up to you to then have to find solutions for other people - not for people old enough to do that, and that includes older kids. Our own kids, well, yes, their lives ARE affected by having a sick parent. But that doesn't have to be something that's seen as ruining their lives. Because it needn't. Sure, there might be things youcan't do with them, but there'll be a ton of things you CAN do, so focus on those. Let other people do the more physical things and share the love. When it comes to doing things FOR other people, well, that's one of the great joys in life for me. But I do need to temper that and make sure that I don't over-commit myself, because saying you'll do something and then not doing it is worse than saying no in the first instance. So if you know you might not be able to follow through, be honest - with yourself and the other person, and say no. 

I could go on and on and on...there are so many things. But I need to stop typing so I can paint later on and finish the piece I'm working on. And I need a shower - having taken on posting for RABlog Week, I promised myself to write and post before I shower every day to make sure it gets done. I slept late this morning. It's gone midday now, just, and I'm still in PJs and I need to get dressed! 

My bottom line is, put the things in place to live the life you want to live, RA and all. FIND the things you love to do and DO them. Say no to the things you don't want to do or cant do. Strive to create balance in your life so that it's sustainable. Make sure you have things in place that you want to get up and do. RA is a disease you've been diagnosed with. It isn't your life, so don't let it become the only thing in your life.

Sunday, 23 September 2018

The Medicine - Pain Meds and Dealing with Doctors

The Medicine Patients with autoimmune disease often are not treated well by Doctors and Pharmacists when we ask for or receive prescription pain medicine.  What has been your experience?   Share the good, bad and ugly side of your experience.

It's September and RD (Rheumatoid Disease AKA Rheumatoid Arthritis) Blog Week is on as of today. Once again, it's the spur to get me writing again... I'll have to write a post at some point to catch up, as I've been MIA for almost a year from the blog...and it's BEEN a year. However, that can come after I get through this week - assuming I manage to stay on track and post every day. Fingers crossed - as far as they will anyway.

So, the topic... Medicine. This isn't one of the topics I'd have chosen, but I'll have a go anyway...

My biggest issue with the RA meds and analgesia has been having to take the bloody things in the first place. Like many people, I really don't like taking drugs - one of the reasons recreational drugs have never appealed to me, which is probably a good thing! So being in a situation where I have a whole raft of medications that I have no choice about taking is not easy.

I have to say though, unlike many, pain meds, by and large, haven't been a huge issue for me - getting them, and/or using them.

For many, many years, my RA was very mild and slow moving - the story of my diagnosis and progression can be found in THIS POST. I had a drug called Capadex (a combination of paracetamol and a small dose opioid) on hand for when I flared - I didn't need daily pain meds. It wasn't until the wheels fell off in 2013 (see the linked post) that I had to change that. 

In Australia, for the most part, GPs (general practitioners, or PCP, in American terminology) tend to manage a lot of the prescribing and monitoring of pain meds for chronic illness - they're the doctors we see most frequently, they're the ones who can, if required, bulk bill us so that we have no gap to pay, and they're the ones who know us best as people. There are pain specialists - it's a growing trend here - but not everyone sees one. I have seen them, over the years, at various times, and if necessary, I'd see one again, but as long as I have a good relationship with a GP who is happy to prescribe my analgesia, NOT having to add yet another specialist doctor and the associated fees and extra appointments is a GOOD thing! 

My then GP, when I saw her about the increased disease activity and pain, put me straight onto slow release Tramadol, AND informed me that it was time for me to reconnect with a rheumatologist - which was non-negotiable. 

Typically, here in Australia, rheumies don't prescribe pain meds. Now and again, mine did, if I'd been running short, and he'd been the doctor I saw first, to save me from having to make another appointment and run around more. But it's been a courtesy on his part, rather than the norm. My current one - our interstate move meant a total change of medical team - itself, a mammoth task - has never prescribed any pain meds.

My current GP is a specialist GP with an interest and research background in chronic illness, so he's much better versed in pain management for chronic illness than a lot of general practitioners. My first visit to him - having discovered him in a local medical centre - was a script visit. I'd not, at that stage, transferred my medical files from my Sydney GP, because I didn't know who I'd be seeing regularly and didn't want to have to doctor shop and transfer them for every visit. his profile on the clinic website was encouraging. So I fronted up to a brand new doctor, needing a prescription for Tramadol, a scheduled drug. My usual script was an authority script that got me three packs at a time (twenty tablets per pack) with five repeat scripts. I had some remaining 50mg scripts, but none for the 100mg tablets. So, the introductory conversation was had...he was clearly in a bit of a pickle, because it was the first time we'd met. I COULD have been a drug seeker, on a drug shopping expedition. We don't have the huge issues here in Australia about scheduled drugs that's happening in America, but there are concerns... In the end, he said that it was obvious that I was very knowledgeable about my disease and very clear about my medication history, so he rang and got me a script for the three packs, but NO repeats. He wouldn't prescribe the Diazepam I also needed without having my files. So, I had to make a quick decision based on that single visit about whether or not he felt right for me, and get them moved here.

He's been very good. There have been two visits where I've had to insist on a particular course of action...one time it didn't go my way. But following on from a rheumatologist visit and communication between the two of them the next week, that particular issue was resolved. The second time, he had a med student in the room and clearly didn't want to have to argue with me in front of the student, and gave me the script for antibiotics I needed then - and was visibly relieved the following week when I turned up for a second batch, still VERY sick, that he had...and conceded that I'd known exactly what I needed at the time.

My disease is just barely controlled on my current protocol. A year ago, I was regularly at the allowable limits of the Tramadol dosage, and needing Endone - immediate release Oxycodone - to top up through the night, particularly. When I went to see him to discuss this, and what to do about pain meds, he just reached for his prescription pad, and wrote a script for a Fentanyl patch. So now I have one that releases 12mg/hour that I change every three days. It's an authority script - meaning he has to call the authorities to get me two boxes on the one script, which lasts me a month, primarily so I don't have to be going in to see him every two weeks. I still have the tramadol, but at a much lower dose, and on the good days, that means just a 50mg tablet during the day, and 100mg at night. Currently, it's 100mg for both doses - we're just through the Jewish High Holy Days and I've been singing in the synagogue choir, with attendant rehearsals, and that's taken a huge toll on my body. 

I saw him last week for my regular appointment that usually opens with him asking what he can do for me, and I just say, "I need drugs please!" - and he laughs and picks up the phone. I've been on the Fentanyl patch for a year now, so under Australian law with scheduled drugs, he now has to apply for a permit to continue to prescribe it for me. He continues to prescribe the Tramadol and Endone, and Diazepam (the latter is a long term pain management strategy to keep on top of the muscle spasms I get due to over and inappropriate use of muscles to compensate for dodgy joints, which add a level of pain that becomes unbearable. A low dose of Diazepam a couple of times a week keeps that from getting out of control and lowers the necessary dose of analgesia.

He knows I don't have an addictive personality, and that I'm not addicted to any of my pain meds. I'm highly dependent on them for 'normal' function - as normal as my function actually is... But I'm not addicted. I don't get high. Opioids used correctly for chronic pain don't make you high. They just give relief and allow people like me to get out of bed and actually function.

He's the GP I wish ALL chronic pain patients could have.

Wednesday, 23 May 2018

Elegy for Gab

It's been absolutely forever since I posted here. Initially, there was just too much going on, and a lot of it wasn't very good. It all got quite overwhelming, to the point that there was just too much to write about so I didn't write at all. And then, as things eased, I didn't know where to start to sum it all up and get back to posting, so again, I just didn't do it. So, perhaps that post - a summary - is for another time, because today isn't that time.

Today I want to write about a good friend of mine who died suddenly last Friday morning. Her name was Gab - short for Gabrielle...a name she didn't feel comfortable wearing, and a name the rest of us had trouble making stick to her. The diminutive though, was perfect. 

I met her online, in the photo group I've been posting in daily since the beginning of 2017. I've written about that a few times: and the daily focus it's given me, the re-awakening of my creative juices, the challenge of developing my photography skills when my only camera is the one on my iPhone.  But the most important, and surprising aspect of this activity has been the people. I didn't expect the people.

I've been on Facebook since 2008. I've had the predictable experiences of reconnecting with people from my past - OMG all the people from my school days who I wasn't friends with, who suddenly want to be my friend... What IS that?! Connections with various people from the present time - friends and acquaintances, some who live far away, and others that I see regularly. And then the friendships that develop via different interest groups, and those I've been able to meet in real life, face to face. Some of those encounters didn't amount to lasting friendships, any more than some of the online ones. But some did.

Gab was one of those. The photo group is ginormous. Currently, there are 26,177 members. Not everyone is active all the time, and not everyone posts every day. But enough do that my FB notifications can go crazy just from that group, let alone any other activity, and it's easy to feel quite lost among such big numbers. Early on, I noticed that there were lots of small groups, 'tribes', of people within the mass. People who'd connected particularly for any number of reasons. I was a bit envious of those folk. Reading the banter on the comment threads showed just how much enjoyment there was in contact at that level, and it became clear that there were some people that were managing to connect outside the group, on the ground. Photos of PaDster (Photo a Day, PaD. PaDster being our nickname for participants in the group.) meetups always drew loads of comments.

And then it happened. Over the course of a month or so, via comment threads on particular photos, a group of six of us grew closer, drawn to each other by the photos, and then more so by the conversations in the comment threads. The The Catsuit Gang was born. Six women. Different ages, different backgrounds. Two in America - on opposite sides of the country. One in Germany. Three in Australia - two in Melbourne, and one in northern Tasmania. The two of us in Melbourne organised a meet up - that was easy. Lots of nerves. Lots of, 'OMG, how will I recognise you?' - directed at me, because I rarely have photos of myself online. We did the 'sensible' thing and met in a neutral space, a local cafe. Sensible, cos that's what you do with online people, right? Because they might be nutters. Only she isn't a nutter. She was as she is online. We met up a few more times. And then the great day came when the Tasmanian Cat was going to be in Melbourne and the three of us could get together on one day of her trip.

It was as it had been in the group chat. Gab was exactly as she was online, only more so. We spent that afternoon talking non-stop and laughing so much. It was SUCH a good day. We drank loads of tea, ate good food, told stories, laughed lots, and just enjoyed each other. The photo I've included in this post is from that day. I posted it today in the FB group for today's prompt, 'a really good day' and the edit of black and white with a splash of colour is for a theme I'm doing with my other little tribe for this month.

Gab was an amazing woman. Not well, physically, she struggled with a number of chronic conditions and illnesses, including anxiety. She valued family and friendships immensely. She was possessed of great commonsense, and always seemed to know exactly what to say when one of us was struggling with something. She had a wicked sense of humour. She was a truly gifted photographer - although, I'm sure she'd argue with that. During that trip to Melbourne, her photos changed as she focused on photographing Melbourne itself. She found the guts of what Melbournians recognise as their city, and did superb edits, knocking back the colour just enough for the shapes and subject matter to really shine without the colour being a distraction, but with enough richness still there to be immensely pleasing to the eye. She had a knack for observing and capturing the human condition, and there were some brilliant 'stalker shots' of strangers going about the the business of their day. 

At different times in her life, she'd followed various creative pursuits. She'd crocheted professionally for a while. She could draw. Wrote wonderfully. She never settled on one thing in particular though, always being hungry for new interests and things that would challenge her. She loved to travel and see new places, and we all enjoyed the photos she posted of different places, and the accompanying, sometimes sidesplitting, stories.

She brought something rich and unexpected to my life, as part of our little gang. I think we all feel that. The online experience can be bizarre. People aren't always the way they present online. Gab was. She was an object lesson in how to be authentic online, and be consistent with who you really are. Meeting up with her, with the other Melbourne Cat, that day felt like we'd passed through some magical portal and instead of chatting online in the group, we were in the same space - it felt the same, only in real life.

When she knew she was coming last month, we talked about meet ups. We planned a day at Ripponlea House, one of Melbourne's historic houses that's open to the public. It's a photographer's dream. We planned to pack a picnic for lunch, to save funds. We thought to start at the on site cafe to fuel up with caffeine, then wander and take photographs while we caught up, and then picnic. That was the plan. Life got in the way. Things changed that day, and in the end, we relocated to my house again. Gab came earlier in the day, and then the other Cat joined us for dinner. Dragon Dad got to meet her this time too, and loved her. Said she was hilarious - which she was. When she headed off at the end of the evening, she was talking about her next trip across, and things we might do. And as always, we talked about a grand gathering of the Catsuit Gang. Quite where, geographically, has long been a puzzle, given how widely scattered we are. And the money of course, as none of us are millionaires. Sadly, when that gathering does eventually happen, we will be five, not six.

But Gab will always be part of our gang. She's left us with a rich legacies of 'Gabberisms.' And as we all trawled back through our conversations with her, on comment threads, and in various chats - group and one on one - we found many treasures. Perhaps one of the most meaningful, particularly for me as it was a comment in response to a post I did with a photo of my mother for the prompt 'I wish,' she wrote this:

What a special shot of a precious photo. It's beautiful. She was beautiful. This will sound so wrong right now on this post but here goes. Tears, sadness and regrets are probably not the way to remember her, lovely Karen. While those feelings will almost certainly remain, holding her memory in the joyous and simple times can be helpful. You were lucky to have her for as long as you did. To know her as a woman and person as well as your Mum. I never got that chance. Only the good die young I suppose.
Try turning it a little. Let the grief and sadness turn into thankfulness that you had her in your life at all, even for a short time. While the pain never really heals, you can use it to become the person you know she wished for as a daughter.
Maybe I'm a little too practical but I can't see that any parent wants their child to feel the broken soul feelings that I sense in your words hon. She will not be diminished if you can smile and laugh when you remember her nor would she be content to know you feel guilt for not foreseeing the impossibly unexpected.
It's been 37 years without a Mum for me and while I might wish things had been different, they weren't. I can't change that or it's circumstances but I can remember her with a life and laughter that honours her existence in love. 😊 💛💛💛
Wear white to my funeral and celebrate for I am going to a better place and it is you who will remain in this turmoil called life. 😊
The emojis won't go smaller, and they make it messy, but I'll leave them, because she put them there. That smiley face and the yellow hearts were her signature emojis, 'To me they epitomize my existence. Live, love, smile and be happy. Love and laughter have always worked well for me!' 

So, as sad as we all are, we're only too aware that she'd be very cranky if we sat around weeping for her. Friday, when we heard the news was such a dreadful shock, and we were all in pieces. Today, knowing she's being laid to rest and none of us could be there, has been very hard, and I've been teary, so I'm hibernating at home. But to honour her, we'll all have to pull our socks up and get on with living life as it comes, finding the humour, as she would have, and looking after ourselve and each other. 

Zichrono livracha. Gab, you will be missed. 
That first Melbourne get together. Photo by Gab. Edit by me.

Thursday, 23 November 2017

Rheumatoid Arthritis: When things change

It's official. Orencia is failing for me... I've had a month from hell already, and at day 4 of this month's infusion cycle of this last dose, all the side effects have kicked in - headache, now lessening a bit, and snotty sinuses, plus two afternoons completely crashed on the couch - but no noticeable benefits that I can feel. Still in quite extraordinary pain, and at the max level of analgesia that I can take and still drive, hold lucid conversations, and function, albeit minimally...

Saw the rheumatologist on Wednesday, as scheduled. This last three months since I last saw him has been very much a monitoring period, so I don't think he was entirely surprised to see I'd deteriorated, but I do think he was surprised by just how much. So there was no hesitation on his part about moving straight to the conversation about WHICH biologic to try next, once he'd had a good look at my joints which are all noticeably swollen and red - and, as he discovered when I hit the roof, painful! 

The upshot was that an application for Xeljanz has now been sent for approval by the Prescription Benefits Scheme (PBS). There shouldn't be any issue with the actual approval. I just have to hope that there isn't any backlog to hold up processing mine. It should be in my letterbox in two weeks - that's what they always say...but there can be delays sometimes. I can't start taking it until I reach December 21, which is when my next infusion would have been due, but I want it here, and the script filled, ready for that day...because if, as it seems so far, I'm not going to get any benefits from this last Orencia infusion, I'm in for a month that is going to be very, very difficult. 

And then, Xeljanz. It's the first oral biologic to hit the market, and was added to the PBS lists just over two years ago. It's been in use overseas for quite a bit longer - around seven years now, I think. It's a daily tablet - so no more needles, YAY. Great news for a needle-phobe like me. And no more being tied to a monthly hospital admission which, apart from the timetabling of that, also put me into a hospital environment, isn't the best place for someone who's medically immune suppressed. A daily dose also allows some control should there be any drastic side effects - because I can just stop taking it and have them, hopefully, reverse quickly. And that's a concern for me starting any new drug, as history has shown that my body is extraordinarily sensitive to medications, and in the past I've had some severe and unusual side effects from various drugs, some of which have been potentially dangerous. Also on the up side though, is that Xeljaz doesn't - from what I hear anecdotally - tend to contribute to weight gain the way Orencia does, so it might be that I will finally be able to start shedding the kilos that have stacked on in the three years I've been on Orencia. There are frequent reports of gastric upsets with Xeljanz - that's a worry...but for most people, those do subside as the body adjusts to the medication. It can - being oral and being processed via the liver - be a problem for liver function, so that will be monitored, as will my cholesterol levels, because it can also affect those. And right now, my cholesterol is low - so I can eat everyone's cheese - and I don't want that to change because, cheese, people! However, all those worries can just sit in a box until I've got the script and the medication. For now, I just need to get through this next month. 

As I said, my joints are now very painful - constantly. My hands, wrists, feet and ankles are noticeably swollen. I have a running joke with a few friends that relates to a common question we get asked by doctors examining us - 'Can you make a fist?' Well, I can't, but I can make a damned fine set of binoculars...! For those readers who don't have RA or another form of autoimmune arthritis, indulge me for a moment and stop reading, so you can clench your fists tight, and then open them out big enough that if you look through them, you have a clear line of vision. That's how far I can currently close my hands...there's too much swelling for me to make an actual fist. I'm not wearing any of my rings either, because most of them won't go on - those that do won't come off again easily. 

What's the pain like...? It's hard to describe pain to someone else, particular someone who's not in pain. There's a constant dull ache, a hard dull ache...if that makes sense. That's pretty much everywhere...and it's exhausting. I can feel it no matter what I'm doing. As soon as I move, the skewers start... Hot, painful jolts that rip through the joints. I'm walking with care, I'm thinking about how I'm going to sit down, get in or out of the car, get up out of a chair - thinking and planning each step of any large movement. 

This has been going since the infusion I had before the one this week. I'm tired. Desperately tired. Pain is exhausting. I'm not sleeping well. I'm not sleeping enough. I'm a bit stir crazy, because I've not been out much. I've been doing our grocery shopping in small bites rather than one big shop. And yes, I could order online, but the supermarket websites are really clunky and the times I've done that I've inevitably ended up with odd things that aren't the things I thought I ordered... Plus, leaving the house means I also stop and have a coffee, talk to the people in the cafe - human contact and a really normal activity. I need those normal things...

Yesterday though, I went with a friend into the city to meet another friend for lunch. All three of us have autoimmune diseases, so none of us had to put on a 'game face' - because we all get it. My friend who lives locally picked me up and we drove to my nearest railway station and took a train into the city. The place we were meeting is alongside the city station so that made it easy. And we had a fabulous afternoon. We both both crashed early last night and today, we're both absolutely knackered - how the third musketeer pulled up this morning, after having to go on and work last night, we don't know. But, as Dragon Dad astutely mentioned last night when he could see how exhausted I was, we had a great time together, the three of us. Lots of laughter, lots of stories, some good food, and wine, in a very pleasant setting - SO worth the effort and extra pain and exhaustion. 

Small, simple things that are just such normal activities. Normal activities that can start looking like impossible mountains when you're as sick as I currently am. But mountains that CAN be scaled if the right things are put in place, to make them possible, and to not create further fallout afterwards. But normal is good - it reminds me that I'm still here, still me, even when I'm feeling utterly crap and life is beginning to feel small... So, that's the mandate until I can start the new drug - to schedule regular NORMAL social activities when I can so that even if this month is as difficult as the last one has been physically, there's some light, and laughter, and good people, and normality in the face of this crappy disease.
Three arthritic chicks doing lunch!

Really must remember to put on some makeup before I go out socialising next time, and perhaps consult an expert on doing something about what appear to be my non-existent eyebrows!

Tuesday, 14 November 2017

The majority of people in Australia have said YES!

It's a big day here in Oz! Finally, thirteen years after John Howard's coalition government voted to change the Marriage Act to define marriage as something between 'a man and a woman,' the people of Australia have shown that they support same sex marriage. My Facebook feed has been a happy place - so many photos, rainbows, hearts, happy faces. 

However, there is work yet to do. While the result - 61% saying YES - is excellent, it isn't binding. This should never have been conducted via this non-binding public 'survey. The campaign unleashed three months of deliberate scaremongering and misinformation from the 'No' side. Those on the 'Yes' side were accused of trying to force the issue too, at times. My gut says to me that those occasions were more likely born of years of frustration, watching other Western countries around the world creating legislature that made marriage between ANY adults possible, while Australia dragged its heels, the religious right factions within several generations of governments blocking any useful discourse that could have enabled the government itself to vote on changing the law - as should have been the case. But real harm has been done to members of the LGBTQIA community and their families as a result of the viciousness of the 'No' campaign. That is reprehensible.

In the wake of the announcement this morning of the 'yes' vote coming through in the majority both the prime minister, Malcolm Turnbull, and the leader of the opposition, Bill Shorten, have committed to get legislation through 'before Christmas' that will resolve this once and for all. Turnbull, of course, has a vested interest in getting the job done - his government is currently in the minority, due to the dual citizenship issues among his members, the polls show a continued swing in Labor's favour against him, and if he doesn't push the legislation through, it will almost certainly contribute significantly to a loss in the next election - particularly as Bill Shorten has already used promises to enact a change in the legislation at the last election, and will certainly use it again if we go to the polls without the law being changed. 

And so, regular readers might be curious now, as to why I'm writing this post. It's not about RA, it's not about parenting, it's not a recipe...so why has the Dragon Mother suddenly decided to dip her toe into politics, you may be asking. What, if anything, has this event got to do with her?

Personally, for myself and Dragon Dad, it has absolutely nothing to do with us. We're not married. That may change in the future. And there's nothing in the laws of the land that would prevent that happening. When - WHEN - this legislation goes through, that will still be the case. It won't change a thing for us. 

No.1 son is in a long term relationship, also not married. But, should he and his girlfriend make a decision to get married, they too - like us - would have no legal barriers. The Stepson has recently ended a long term relationship, and is footloose and fancy free, for now. But again, should he meet a girl and decide he wants to marry her, that will be easily achievable. 

No.2 son though, is gay. He came out to me nine years ago, when he was seventeen. He was combative about his announcement - fairly typical of him, when feeling vulnerable. He introduced me to an early boyfriend on one of my visits back to his hometown - again, in a combative style, which rattled the boyfriend at the time... I don't know if he's currently in a relationship or not, as he is still not communicating with me - for some background to that situation, read this post. If past experience plays out, that will eventually change and hopefully we'll be back in contact. 

However, as the law currently stands, should he be with someone and wanting to marry, he can't. And that isn't right. Why should one of my sons be able to marry and the other one not? There's no good reason for that - none at all. 

So, today, I rejoice, along with those in the LGBTQIA community. I rejoice with them and for them. Sooner or later now, these laws will be changed, and people's gender preferences and sexuality will no longer be a barrier to marriage, for those who wish to be married. Among them is my son, who will have the same freedoms as his brother, and his parents. 
One of the more beautiful rainbows I've seen over my backyard lately

Tuesday, 17 October 2017

Rheumatoid Arthritis: What to do when you flare

RA is a nasty, unpredictable beast. It doesn't play fair - ever. Just because you're sensible about your activity level - not too much, not too little, just right... - it doesn't mean the disease will behave. Likewise, you can eventually find a sustainable drug combination, including good pain management, and you'll STILL flare. It really, really sucks. 

So, what is a flare, and what can you do when one hits? 

Flaring is the term we use when the disease does a sudden ramp up in activity - resulting in increased pain, fatigue, that fluey feeling that isn't flu, extra dryness if you're prone to dry eyes and/or mouth, possible skin irritations, and any number of other disease symptoms. Sometimes a flare can give you a bit of warning with symptoms increasing over a few days. Other times - as happened to me on Sunday - you go to bed at night, and then wake up the next morning with one on full bore and just getting out of bed poses your first obstacle of the day. 

What can you do?

First up, refer to your pain management plan. For me, since my pain management review with my GP a little while back (you can read about that HERE), that  meant upping the dose of Tramadol in my morning meds from 50mg to 100mg to boost the overall coverage, on top of what the Fentanyl patch offers. I waited for that to kick in before I reassessed, as I have Endone on hand as well - short acting - to add another level, if required. It was, so I took that mid morning, and later in the day. And again at bed time, again a few times Monday, but didn't need it yesterday or today, although I'm still using the extra Tramadol at this point as the flare is slowly - oh SO slowly - easing. 

Try - and this will sound counter-intuitive - try not to just go back to bed. Even though it hurts to move, if you don't move at all, you will seize up, and that just makes things MUCH worse when you do have to move. I did eventually park myself in a nest of pillows on the couch by Sunday afternoon, again Monday afternoon, and yesterday afternoon. BUT, I got myself up, showered and dressed - with significant rest periods between all of those things - each day. Dragon Dad brought me coffee from down the road on Sunday morning - I couldn't face the drive there - all 800m of it...that's how bad I was at that stage. Monday, I had to get myself to the GP for a new Fentanyl script, and then across to the chemist to pick it up. THAT little excursion was planned with military precision, and included a rest stop at my local cafe before getting in the car and driving to the chemist to get the prescription sorted. I crashed for the rest of the day before making a very simple dinner for Dragon Dad and I... Today, I've been up all day, I've been out, I've managed to do some work that came in - allowing for the fact that this is all extremely low key activity. I didn't get to tai chi last night - I knew by the end of the day that a 6.30pm class was just not going to be possible, and I'd have had to have slept in a corner of the school hall because driving home afterwards would have been a no go! So, do get up and keep yourself moving gently through the days. Do some gentle stretches, if you can, to ease potential muscle spasms.

Eat well. Again, there's effort involved, unless you've got the funds to order in meals for a few days. But there are simple ways to maintain your nutrition that don't take too much effort. Read this post for some of my hacks and strategies. Money has been exceedingly tight for some little while now, so I've been pushed right to the extreme edge of inventiveness and ingenuity to manage low effort meals that are sufficient to feed Dragon Dad who's working very long, tough hours and really needs good solid meals that are enjoyable as well as sustaining. 

Say no. A big flare is when you cancel, or say no to requests from people to do stuff. You DO need to rest and look after yourself. It's the time to ask for help too - if there's something you do have to do that can't be rescheduled, call someone and ask if they can drive you - if you're taking a lot of extra analgesia, that may be essential. If you've got someone in town briefly and you'll miss them if you don't make the effort to meet up, see if they can come to you - remember, they're not visiting your house to inspect your housekeeping, they're coming to spend time with you. If people offer to help, say yes, and give them specific things to do that will help you manage your day - ie, bringing food, transport, minding kids, etc. 

Leave the housework - from years of experience, and living with kids, I know that if I don't get to household chores one day, they will wait patiently until the next day, and the next and the one after that! The fly in the ointment for me with that one, is that if it's something that really gets up Dragon Dad's nose, he'll quite likely do it - he can't handle the dishes sitting around, for instance...but won't stack the dishwasher, so he ends up washing them by hand! 

Lastly, DO NOT feel guilty. You didn't make the flare happen. You didn't, for that matter, cause your disease. You can't help flares - they happen, it's part and parcel of RA. So you have nothing to feel guilty about. And anyone who tries to make you feel guilty is not someone you need to have around you - during a flare, or just in general.

The bottom line is to look after yourself - during a flare, you need to coddle yourself, because you'll be feeling like crap. Just go gently, binge read, catch up on TV you've missed, watch a movie, drink a lovely glass of wine with your dinner (it'll help stimulate your appetite!), and wait it out. I'm on day four, and the flare is easing. Still more pain than usual, and I have absolutely no stamina, but it's better than it was on Sunday and Monday, by a long way.