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.
 

Thursday, 28 September 2017

RABlog Week 2017, Post 4: Hobbies - how they may help living with RA

Hobbies – Hobbies are healthy or maybe they are not? What is your hobby and how does it help you with your autoimmune conditions? If you do not have a hobby imagine a great hobby for a person dealing with RA.
Hobbies are one of those things that get bandied around within the chronic illness communities as a - by and large - good thing. In theory, they give you something positive to focus on to distract you from your disease and the difficulties faced day to day. It's something I struggle with, as a concept, because I'm not a big 'hobbies' person, perhaps because, many of the things people do as hobbies are things I do, or have done, professionally. So for me, they're not hobbies. They are, though, things that give my life meaning. 

I'm a writer. Apart from this blog, I write professionally for a ghost writing company. I've written articles for mainstream craft, art and design journals, locally and internationally. I have chapters in a book that was published about the Freemasons in Australia. There are education kits in a major Australian performing company and a Sydney museum that I researched and wrote. I started my blogs (I also have a hugely neglected book blog, which was my first of the two) so I'd have a place to write that didn't impose a brief. But I don't really regard blogging as a hobby - it's part of a larger writing practice. It's just the place where I get to write what I want.

I'm an artist. I draw, paint, create mixed media works, and I work in clay. I'm tinkering with photography too. I've exhibited and sold all over the country. I've taught - art, and art history and theory. At the moment, due to lack of funds and studio space, I can draw, but that's about it. I'm struggling to find the right headspace though - I have ideas that could get me going again producing steady work, but I also need to find outlets. It's energy to make the list and go scouting that's holding me up there. Again, it's not something I do for the fun of it. It's professional work and I aim to be selling it. Very long term, my ideal situation would be to have a home based studio that's set up for a mixed practice, with a kiln for ceramic work, where I could maintain my own practice, and also run small classes for adults. That's going to require some very different financial circumstances to where we are at present though. 

I'm a musician. I'm a classically trained singer and was part of a major opera company chorus for fifteen years. As well as chorus, I had some small bit parts and understudies. I've also fronted big bands and concert bands as a soloist. I was a member of Australia's only professional Jewish choir in Sydney. Right now, I'm up to my eyes with my synagogue's community choir being part of the High Holy Days services. Yom Kippur starts at sundown tonight and goes through all of tomorrow. I've been a singing teacher in my time too - in schools and privately. 

Even food, for me, has a professional base, so while I do enjoy cooking, it's something I've done professionally, and that's always there in the background. That professional experience isn't something that goes away after you finish working in an industry.

So, I'm a creative, a professional creative, with skills and experience across a few different fields. It makes crafting a hobby out of these activities impossible, because my head is in a professional space when I do them, and that brings its own pressure. It's something I find other creatives who've worked professionally in their fields understand. Those who enjoy many of the activities I do as hobbies, don't... For them, it's an escape. The activities are something that's different from the rest of their lives, and it gives them that place to do something for themselves that IS separate, and just for them, and fun - it's play. None of these things have been 'play' for me for a very long time. I'm not unhappy about that, but herein lies my difficulty with the concept of hobbies....
I DO have an escape. I'm a reader - a voracious reader. My kids used to tell people I ate books. Even the Stepson started giving me his school books of an afternoon saying I could have it to read because he knew I'd have it back to him in the morning, finished, to take to school again... To that end I have an enormous home library - many thousands of books. There are two major fiction collections - adult and children's. They cross many genres. And I read them all. That's a criteria for them to remain on my shelves. If I don't re-read it in a year, then it goes. Books take me places. On a bad day, I can tuck myself up on the couch with a blanket, the cats and tea, and get transported to wherever the current book is set and become part of someone else's life and adventures for a while. Oddly though, reading is still not something I see as a hobby. For me, reading is like breathing. I can't not read. I ALWAYS have a book with me, and usually have a couple on the go at the same time. 

My range of activities is broad enough that there's usually something I can find to do to pass time, and connect me with other people, regardless of how crap I'm feeling. At worst, I hibernate with a book and populate my immediate world with the characters from the books I'm reading - they have the benefit of not requiring me to find the energy to be polite or look after them! 

So, having established that while I have any number of ways I spend my time, but that I don't regard them as hobbies, the thing I WOULD say is that human beings are creative creatures, inherently. So, if you don't have something creative that you do that's apart from your normal day to day activities, and something that offers you time out and an opportunity to meet new people, then get out and find something. The online world has opened up numerous opportunities for group activities that you can do from home too, so not being able to get out physically needn't be a block to that either. The photo challenge I do on Facebook has introduced me to many new people, and has lead to my photography improving out of sight - and that's with me only having a phone camera for digital photography. I've even met people face to face in the group for planned photography meet ups. So, there ARE things...and they do make a difference when you can get to the end of the day and look at something you've done, someone you've spent time with or spoken with that's, for a little while, taken you out of the day to day thing of being ill.

Wednesday, 27 September 2017

RABlog Week 2017, Post 3: RA and partners


Partners  Where would we be without our partners? They are often not just partners but caregivers. Tell your partners story. And if you do not have a partner what will your ideal partner be like, or do you even want one?
Well, that's a big question... It raises a gazillion possible issues in itself, and for me is a complex topic. I'm also still running a day behind the prompts, so this may not be the most considered post on the topic that I might write. 
I was diagnosed with RA in 1992. That's twenty five years ago. A bloody long time... And a number of partners over the course of that time (and that's another story...suffice to say, it's taken me most of my adult life to figure out relationships and to NOT keep getting involved with replicas of my father...). At the time of my diagnosis, I was still with No.2's father. The RA appears to have been triggered into full activity by my pregnancy, as there'd been no overt indicators before No.2 was born. However, with the clarity of hindsight, I can pull together odd things that, gathered together, are clear indicators that there was something much bigger going on. 

At the time, life was very busy. (For my diagnosis story, read HERE) I was back at work after six months of maternity leave. I worked in a day care centre, so I could take No.2 to work with me. I was still breastfeeding - almost entirely - he was completely uninterested in solid food. I also had a contract with the opera company that was particularly busy - a contemporary opera for the Adelaide Festival. No.2's father was working full time, but sort of on call shift work, given the nature of his job, so his hours were all over the place. He was also conducting two concert bands out of hours, so was not home a lot. We had a huge mortgage, and money was tight so altogether it was pretty stressful. Me getting sick was the straw that broke the camel's back. My then husband didn't deal with it at all well. Ostensibly, he was supportive, and said all the right things, especially when there were other people around. But for me, the emotional support was just not there. I was deeply frightened, and had to deal with the additional trauma of weaning No.2 - something neither of us was ready for - so that I could start taking medications to deal with the pain of the arthritis while tests continued to establish a precise diagnosis. I felt very alone. No.2's father didn't 'do' illness. He's a man who largely lives on the surface of life. Emotional issues are something he avoids. Ultimately, it was a large factor in our marriage breaking down, which finally happened when No.2 was around 4. 

What followed the breakdown of my marriage was a long period of single life. The other adult who was the most present figure in my life was my mother. She was amazing. She stepped in and became the 'other parent', given that my ex, by then, was also studying part time and was very unavailable. She was the one who pitched in if I was flaring and needed another set of hands. 

It wasn't until No.2 was 9 that I met someone. Another mistake, and a colossal one at that. I'm not going to retell that story in detail, it's not pertinent to the discussion, other than to make the point that the fact that I was sick was part of what drew him to me. He needed to have someone to look after. But almost nine years of chronic illness - thankfully comparatively mild, but very much a factor in managing my life from day to day - had made me very independent, and very capable of finding my way around the things that were difficult. He NEEDED me to be sick. I certainly didn't need someone to need me to be sick!! Ultimately, it became a highly toxic and dangerous relationship from which the kids and I were forced to flee and go off the grid. In hindsight - again - we were extremely lucky to have the support of some very fine women, both emotionally and practically. 

I had a brief relationship many years later - 2004-06 - that was the last of my 'father figure' men. He also lacked the ability to cope with a sick partner. My RA WAS a factor. It played out differently with him but it was a definite issue. 

By the time I met Dragon Dad I wasn't looking any more. It just happened. And he's NOTHING like my father! The RA, while progressing, was still moving slowly and was largely manageable. The first experience he had of how it could impact me was a six month period early in our relationship when I caught a cold - which exploded into a massive chest infection very quickly. That was followed by a string of UTIs, reactions to medications, another chest infection - it was a bad six months. Throughout, although struggling with demons of his own around relationships, Dragon Dad was solicitous and caring - and his practical care was superb. Shopping and cooking done for me - at his place or brought to mine, prescriptions collected, etc. The flares came and went - he struggled to understand the ramifications of the disease, but asked questions constantly, and was supportive when I tried to do things like build fitness and find means to train without tripping flares. To this day, he's the only person who's trained me and NOT triggered a flare - and that's counting the many professional personal trainers at gyms where I've had memberships over the years who just didn't LISTEN...

We were living together by the time the wheels fell off in 2013 and the RA exploded overnight - it felt like overnight anyway, the change was so sudden and so severe. I was terrified - I had no idea why my body had suddenly gone rogue - there was no particular trigger. I was, in fact, the fittest and healthiest I'd been in some time, exercising regularly, losing the weight that had gone on after a bad accident to my right knee had had me on crutches for six months. 

Months and months of tests, medications, disastrous reactions to some of those meds, and then a hospital stay ensued - it was all pretty nasty. You can read the details of that HERE. Since then, it's been an ongoing struggle to find the magic mix of medications that will keep me stable, slow the deterioration, and allow me to live as normal a life as I can. As those of you with RA know, that's NOT a straightforward path. There have been many ups and downs. There have been some really bad times when I've had extensive flares, I've struggled emotionally, I've been really scared, and I've not known what to do next. 
Dragon Dad has been there. He's been scared too. He watched my five week black out while I was on Methotrexate - deeply frightened. He's been frustrated - he's a man who fixes stuff. If something's not right, he fixes it. He's a good fixer. He can't fix this. And he finds that extremely difficult to cope with at times. It's OK while I'm doing well. When I'm not, it really bothers him that he can't DO anything. He compensates by spoiling me - he buys me good bottles of wine, Haigh's chocolate, brings home DVDs of movies I love, packs me into the car to go for drives so I don't stagnate in the house, rubs my feet, runs baths for me, anything he can to make it easier for me. He's taken over the heavy housework - as he said yesterday when I told him about the posts I'd written, if I leave something long enough - like the dishes (see my PaD photo from Monday 25th September), because I'm not functioning well enough to do anything bar the most basic things, he just does them. 

He's NOT perfect. He doesn't get it right all the time. He does have a tendency to make decisions for me, on the basis of what he thinks I may or may not be able to manage. That's an ongoing conversation between the two of us that I find I have to revisit periodically to remind him not to do that. It drives me absolutely bonkers. The irony is, he HATES people making decisions on his behalf, so he really should know better. But in his manifestation of the alpha male, and the fixer, he does it for me, for the Stepson, for anyone he has some sort of care position with... It's a major pitfall for those who care for those of us with chronic illness and disability and it takes a delicate balancing act for those who do the caring to NOT fall into the habit of making those decisions for us. He may well be accurate in his assessments, but that is NOT the point. When he does it, he disenfranchises me and my ability to make those choices for myself. 

At the end of the day though, like so many do and as some have done in my life, he could have bailed. But he didn't. And I'll always respect that and be deeply grateful. It has changed and affected our relationship, me being as sick as I am now. I know that, and it makes me sad. But the love and respect we have for each other is profound, and THAT is the basis we build on to continue in it and continue as partners in this mad thing called life.

Tuesday, 26 September 2017

RABlog Week 2017 Post 2: Living with RA - Tips and Tricks

Tips and tricksWhat are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition.

I liked the idea of this prompt from the outset, but I've not got a nice organised list to download into a post...I'm just not that organised!! So, bear with me while I ramble through how I manage day to day.

The biggest thing, which has made the biggest difference overall, has been to learn to LET GO. I'm something of a perfectionist, and a massive multi-tasker. Back in the day, during one of the busiest times in my life (VERY early years of RA when it was very milk) I was at art school in the final years of my degree, sole parenting two children who were at two different schools, had a one day a week job in a garden centre with my mother, and had the opera chorus contracts as well. It could get VERY hectic when they all started colliding...which did happen. But I got through all of them. Finished assignments, learned my music and did the shows, got to work on time, got the kids to and fro where required, and kept up with the house - well, sort of, re the latter. My house couldn't have been photographed for a magazine spread at ANY time during that period, but that wasn't on the calendar so it didn't matter. 

It's been VERY hard to come to grips with the fact that I just can't load myself up like that any more. But I can't, and I don't any more. ONE thing at a time, and on the bad days when I can't even manage that, let it go... 

Related to that is learning to say NO. To people who ask for help, or extend invitations, or have expectations... Most of the time, it's going to be OK, and it's nice to be invited out, and it feels good to help people out, etc... BUT, not at my own expense. I was someone who said YES without thinking most of the time. But these days, I take a moment if I'm asked to do something - no matter what it is. I might need more than a moment, in which case I let the person know I'll get back to them to allow myself space to work out if it is something I can manage or not. I don't make up stories either if I end up realising I have to say no. I tell it as it is - I tell people if I'm not well enough to go somewhere, or do something for them. They may or may not take that on board, but that's not MY issue - it's theirs. MY issue is being able to manage what I need to do on any given day, and saying yes and adding a load I can't manage can mess me up for my day, and more days beyond that sometimes. So, learn to say no and look after yourself. And that, by the way, includes saying no to your children (if you still have children at home) if need be.... Obviously, not for something that HAS to happen, but they also need to learn that you can't be going non-stop without it being potentially harmful. 

Managing at home - well, there are things I just can't do domestically any more - not if I want to be able to do anything else that day. I CAN'T vacuum the house and expect to have my hands functional by the end of the job. So, Dragon Dad, bless his cotton socks, vacuums and mops. I use the dishwasher - my hands aren't safe in a sink. I have a gazillion cooking hacks - I wrote a post about those a while back - you can read it HERE and take whatever is useful for you and tailor it to the way you eat. 

Overall though - PLAN. Work out what you need to do, what you can do, and make a plan around those factors on each and every day. Be prepared to delegate. Days I know I'm not going to make it to the end of the day and be able to produce dinner, I let Dragon Dad know as early as possible in the day so he can bring something home on his way back at the end of the day. If there's an appointment I need to get to and I know I'm going to struggle to do the drive, I find someone to take me. If there isn't anyone, I move the appointment. If I can't get all the shopping done on one day, I break the list up and do it in smaller batches over a few days. If there's a busy time ahead - I mentioned the Jewish High Holy Days in my previous post (we're in between Rosh Hashanah and Yom Kippur at present and I'm singing in the choir and there are piles of rehearsals) - plan ahead. Move anything that's not essential so that in between the things that must happen, there's down time so you can rest... I'm doing bugger all apart from rehearsals and services at the moment, and that's how it'll be until after this weekend coming is over. It's why these posts have been going up late - because I HAD to rest. 

Accept that perhaps you won't do things to the extent that you once might have. A big one with that for me right now is this blog event. For the last two years, I've been very prepared and have written very considered and detailed posts. This year, that's not happening. I've been up to my eyes with the High Holy Days prep. I'm exhausted. I'm flaring. I had my infusion yesterday because with diabolical bad timing that came right between Rosh Hashanah and Yom Kippur. So I had a choice - write much less considered posts off the top of my head and still be part of the event, or bail altogether. I told myself that in the greater scheme of things, it would be OK if I bailed. Which it would have been. BUT, I wanted to do it. I've really enjoyed it in past years, so I didn't want to miss being part of it this year. So I decided to just get moving and write SOMETHING. Are they the posts I'd have written had I had different circumstances that gave me more time and energy? No, they're not. But it's a great illustration for this particular prompt - because I'm having to let go of that notion and just embrace the fact that if I'm going to participate - THIS is how the posts will be.

And on that note, I'm wrapping up this post, because I have a rehearsal tonight so dinner has to be early so I can eat before I go and it's 4.30 and I need to make a coleslaw to go with the chicken we're having.

RABlogWeek 2017 Post 1: Mental Health and RA.

It never ceases to amaze me how much faster the years roll past as we get older...and that it's late September and #RABlogWeek is back again... So, first post of five this week - we'll see how I go with keeping up. For those readers unfamiliar with this event, RABlogWeek is an initiative set up by my friend Rick, who blogs at RA Diabetes. It's an international event involving people with RA blogging each day, responding to set topics. It's fascinating reading all the different responses to the posts, and something I've found to be a good focusing activity, as - oddly enough - it usually hits in a point in the year when I've lost my blogging mojo...weird that.

Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?
I had to laugh to myself when I saw the first topic for this blog event. Regular readers here will have read a number of posts I've written this year pertaining to mental health issues - mine - that have arisen largely due to having RA and dealing with it now being severe. For those new to the blog, or who perhaps haven't seen those posts, you can read them HERE, HERE and HERE. If you read them in the order I've done the links, this post will possibly make more sense, because managing one's mental health alongside a chronic illness is definitely a journey. 

So, how do I manage day to day...well, that can be something of a moveable feast. I don't have an overarching plan, currently, and I'm not seeing a therapist of any sort right now. So, I'm self managing. 

I'm a reasonably positive person, inherently, which is useful in the sense that being depressed - as I currently am - (backstories linked above) is a deeply uncomfortable thing - and I mean REALLY uncomfortable. And that's on top of all the feelings involved with depression. So I'm fighting the demons, wanting to retreat and hibernate, generally avoiding people, etc, but at the same time, my inherent nature is up in arms against all that. Overall, that's a good an useful thing, but it does make for feeling very uncomfortable in my skin, at the same time as providing me with the impetus to DO something about it rather than stay stuck for too long, as might be the case if I tended more to negativity and depression... 

I MAKE myself get out most days. I aim for everyday but don't beat myself up if I can't make it - although, a few days running of staying at home is now a red flag. I take myself out to have coffee in the mornings nearly every day - it's a small expense,  but it's a means of ensuring I DO go, and it means I need to speak to people, if only to make the order for the coffee. Sometimes, like today, I arrange to meet up with someone - but I do tailor who that is depending on how I am. I'm post infusion today, with a monster headache and I'm feeling pretty crappy, so the person I saw is someone else who has a chronic illness and gets it, so it's OK to be crap. 

I have ongoing projects. I do a daily photo challenge - you can read about it and see some of the photos HERE (if you checked out the other links, I talk about it in some of them too). This year, it's been a lifesaver. there's a prompt every day for a photo that has to be taken and then posted on Instagram or the group's Facebook page. It's a commitment I have to keep. Some days, the really bad ones, it's the ONLY reason I've got up. And then I sit on FB and watch the other photos popping up and chat to people via the comment threads. It's got NOTHING to do with RA or any other chronic illness, and that's a good thing. It's creative, it gets me out of myself. If you want to see my photos, hop on over to the Dragon Mother Facebook page - I post them there too. 

I committed to the community choir at the synagogue for the High Holy Days - which we're in the middle of now (which is part of the reason I'm so late with this post...it's been very busy). I'm a trained classical singer. In Sydney, I was a member of the only professional Jewish choir in the country. So, singing in a community choir is very different, and I have to bite my tongue sometimes, because the environment is completely different. BUT, it involves me in my community in a useful way. It gets me singing again - and singing releases endorphins - and we all know how good they feel! Also, it's helped me meet people in the community with whom I have things in common, so it's the beginning of new friendships. An added bonus is that someone I knew in Sydney is also now in Melbourne and singing in the choir too, so rekindling an old friendship has been lovely. 

Exercise. I can't rant on enough about how important it is to keep moving. Mind you, I'm bang in the middle of a fortnight that's made it impossible for me to get to my Tai Chi classes - rehearsal schedule clashes, the infusion, AND just feeling SO crap with a flare...something had to give and that was it. But starting Tai Chi this year has been fabulous. Getting out - again - meeting new people - there's a pattern here... - and doing something that's physically challenging BUT possible, and that's helping me overall with strength and mobility. And, again, after a class, those lovely endorphins...!! 

Ultimately, while I don't have a plan, per se, for managing depression, there are things I've put in place to help me manage around it, and stop myself from getting sucked too far down into the black hole. I'm not one to splatter myself all over the place, so by and large, people haven't really been aware of the emotional struggle that's been going on. I didn't even really write about how big it was until fairly recently (it's the third of those links to past posts up early in this post), and I've not talked to Dragon Dad about it in any detail, because right now HE'S suffering from depression and extreme stress, so he's not in a position to be able to cope with mine. That will pass. And then I'll talk with him. But for now, part of me looking after myself is ensuring I don't push HIM over the edge... 

It's different for everyone. But at some time in a chronic illness journey, depression IS going to be part of the picture, and it may be something that recurs at different times. Knowing yourself well enough to know how best to tackle the situation is vital, and if need be, seeking appropriate help is really important. I'm not currently seeing a therapist - and there are a few reasons for that, but I do have someone I can access if I feel as if the things I'm currently doing are inadequate.

Monday, 21 August 2017

Rheumatoid Arthritis - New Pain Management Plan.

Many thanks to everyone who's read my last post and left comments. As those of you with chronic illness know, this can be a weirdly isolated life, when the disease is severe and interferes with our ability to hold down a regular job, and be out and about the way most healthy people are. So the social contact that comes via the Internet can make a very big difference. 

I mentioned in that post that my pain levels had reached unmanageable levels. Slow release Tramadol was the basis of my pain management - with Endone (an immediate release opioid) as required for breakthrough pain. The maximum dose for the Tramadol within a 24 hour period is 400mg. I had reached a point where I was taking 150mg in the mornings, and 200mg for the evening dose, so I was pushing that. And it wasn't cutting it. Particularly as I neared the end of the four week infusion cycle. Plus, I was SO fogged up with all the Tramadol that I wasn't functioning well, cognitively. As well as discussing a possible change of biologic drugs with my rheumatologist, we did talk about pain management, but he doesn't prescribe my pain meds - so it meant an appointment with my GP. 

One of the things about the interstate move a year ago was facing the thought of finding a new medical team - and breaking them in. I'm not a passive patient. I'm compliant, once a plan has been nutted out that I'm comfortable with, but I don't just sit and let the doctors work it all out without taking my feelings and contributions into account. I had a brilliant team, between my GP, rheumatologist and physiotherapist, in Sydney. 

Thankfully, my Sydney rheumatologist had someone in mind for me, an old colleague and personal friend. He knew I needed another specialist who would work collaboratively with me and, most importantly listen to me and REALLY hear me...because in the past, that's been an issue. It nearly always is a big issue when you don't present medically within obvious and traditionally recognised parameters. I am sero-negative - ie, I don't have, have never had, a positive rheumatoid factor in my blood. Around 20-30% of people with rheumatoid arthritis are seo-negative. SOme of the more traditionally recognised features of RA don't tend to be as overt with sero-neg RA - such as swelling. I DO swell, but I rarely have the big balloon-like swelling that the doctors expect to see, so unless you know my body well, it's unlikely you'll notice the times I am swelling. My Sydney rheumatologist learned what to look for. My new guy here is learning too - very fast. He's taken good time during consults to check me out very thoroughly, and I'd say, apart from the letter that I had with the referral, my Sydney guy had called him and had had a chat at some point before we met.

The GP was the next person to find. My Sydney GP didn't have anyone she could refer me to here, so I had to play a bit of roulette - that's certainly what it felt like. My new GP is proving to have been a very good discovery. So, I headed in last week to discuss the pain management issue. We went over where I was at with pain meds and NSAIDs. He's stressed the importance of keeping the dose of the latter up - so, that's 100mg morning and night of Celebrex, and Losec in the mornings to help protect my stomach, as they can cause gastric ulcers. Next was the analgesia. 


Tramadol is an opioid like drug. It's scheduled, so to get a prescription for more than twenty tablets at a time, AND repeats, requires a phone call to the PBS - Prescription Benefits Scheme - to get permission to make the bigger prescription - which saves on doctor's visits, as it's a drug you almost always have to get prescriptions of by actually seeing your doctor, which means another charge for the visit, and so on... Typically, I've been maintaining prescriptions for the 100mg and 50mg tablets, with authority scrips for three boxes at a time with five repeats.
 

We batted a number of different alternative options around. The one point of agreement was that I was going to have to have an opioid as the base medication. While there has been huge noise in the media about opioid abuse and there are plans here, I believe, to start restricting the prescribing of them, as is already the case in the USA, thankfully, my GP is a chronic illness specialist GP. He understands chronic pain, and the difference between chronic pain that is chronic illness based and that which results from an injury. He has no issue with them being used - appropriately - to manage chronic pain that's the result of a disease like RA. For me, at this point, it was a question of the mode of delivery. Ultimately, after some discussion, I've ended up with a transdermal patch that I replace every three days. Each patch delivers 12mg of Fentanyl per hour over 72 hours. With that, he prescribed 50mg of Tramadol in the mornings and 100mg at night. And Endone for breakthrough if I flare.

It's been a week since that appointment. I am feeling noticeably better. The pain IS more doable. Overall, the 'normal' pain is less. I'm more aware of the degree of stiffness I'm experiencing - that's particularly noticeable in my hands - typing this post is taking me about twice as long as it should due to all the typos I need to correct when fingers land on the wrong keys! If I sit in one position for too long, I have real difficulties getting up again. I'm excruciatingly stiff in the mornings - all this stiffness was being masked by the amount of pain I was in and being lumped in with it... That Tai Chi I'm doing is going to HAVE to become a regular morning thing - once I'm mobile enough in the mornings to warm up and work my way through the Beijing 12. It will, I hope, then set me up for the rest of the day. I'm much less fogged, and have found I have a bit more energy - that was being sapped by the amount of pain I was in previously. My head is clearer for not being fogged up by the large amount of Tramadol I was on.

Time will tell, of course. I'm now starting week four of the infusion cycle, with my next one due on Tuesday next week - this is the week when I can anticipate some deterioration. So it'll be interesting to see how that plays out now. Hopefully, it will be a bit better than it has been. I'm sleeping better too, in between waking due to pressure pain in my hips and shoulders that wake me and require some major re-positioning before I can drop off again. 


I'll be back at the GP next week to review this first fortnight with the patches, and get the next prescription if he decides the improvement has been good enough to settle with this as the plan... So, I'll report back then, if not before!
Poppies, in honour of my new analgesia - photo by me.

Monday, 14 August 2017

Rheumatoid Arthritis - when the penny drops that it's forever

I've been MIA for a while now, I know, and for regular readers, my apologies. It's been a tough six months or so. I've had increasing pain, therefore increasing analgesia accompanied by increasing brain fog. The Orencia infusions have been giving me a couple of good-ish weeks out of the four from infusion to infusion, and I'm well aware that that's not good enough, but it's also been a busy and pressured time with a number of other things going on.

The emotional impact has knocked me for a six. Those of you who follow The Original Dragon Mother on Facebook - link HERE - will have been watching daily photos going up from Fat Mum Slim's Photo a Day challenge, as I chose to drop them on that page as well as within the FB page for the group. And not much else. Certainly not blog posts from me. As I've written previously, I started that photo challenge in January this year, partly to try and kick start my art practice again - in my mind, I had optimistic visions taking a photo each day to post and doing a drawing each day too. That hasn't happened. The photos, yes - the drawings, no. I've been writing for work as the assignments come in, but nothing else, really. Deadlines for competitions have come and gone, and ideas to pitch have sat in the slush pile with nothing happening to them. Eventually, I stopped and looked at all of that, and recognised all the signs of depression, and then had to come to grips with what was going on. 


Rheumatoid arthritis, like all autoimmune diseases, is chronic, incurable, degenerative and painful. For twenty years after my initial diagnosis, I got off extremely lightly. Flares aside - they were nasty and debilitating - it was mild, and manageable. When the wheels fell off in 2013, it all happened very fast. Before I knew what had hit me, I was in hospital barely able to walk, hot on the heels of having pretty much lost July of that year to Methotrexate and the brain fog that was more like a complete brain wipe out, because I really don't have memories of that month at all. There were so many doctors, so many tests, so many drugs, and then more drugs, and reactions and allergies, then different drugs, constant testing and monitoring. It's a really BUSY thing, having a chronic illness. Meantime, there were other pressures - stuff with Dragon Dad's business, family stuff, our interstate move, the inevitable isolation that happens at the beginning of establishing yourself in a new place, new doctors, etc, etc... BUSY. Then things started to settle. Routines got established. I acquired friends on the ground that I could meet up with and hang with. Dragon Dad put the business on hold and got a job in real estate - something he's always wanted to do - and started being gone a lot.

And I was a bit of a mess, to be brutally honest. Even he doesn't know how bad its been - that would be an added pressure he just doesn't need. The Photo a Day challenge became, quite often, the thing that got me out of bed. Sitting on FB chatting to people in the group via comment threads on photos became my main socialisation. That, the cafe down the road, and meetups with a few people I see regularly. Until I realised I had to come to grips with it all or I was going to get myself stuck in that safe little rut - and that's not a healthy option. 


The crux of it, in simple terms, is that I'm NEVER GOING TO GET BETTER. Looking at those words is awful. Living it is worse. How I am right now is, possibly, the best I'll ever be looking ahead in time. I don't know. I'm looking at a change in biologics by the end of the year, if not sooner. I've just rejigged my pain management drugs and am getting acquainted with my first opioid as the base medication, in the form of a patch on my arm. A new bio may work better and change everything. It may not. What it won't do - what it can't do - is make it go away. Nothing can do that until the scientists who are doing the research figure out a way to cure the disease. 

There ARE worse things. I do know that. And there are people I know - good friends - who also have autoimmune diseases, some of them have multiple diseases, who are far sicker. Are in more pain. Have much bleaker outlooks. And I feel for them, and try to support them as much as it's possible for someone who's geographically distant in some cases, but at best, just a pair of ears. Here's the thing though - there is a lot of 'competition' about degrees of illness and disability in the online world of chronic illness. It generates, at times, some very bad behaviour online. That disgusts me. We all have enough to deal with on a daily basis without that crap. This isn't about me trying to make a case for how sick I am. This is me trying to come to grips with, and explain, what the sense of confronting a long term, incurable disease is like. Because no matter how severe or mild it may be - and I've now had the dubious privilege of experiencing a wide rage of those - it's ALWAYS going to be there. 

That's what's had me hit the wall over these last few months. Having the absolute reality of that really sink in. I am ill. Ill enough to require specialist care for the rest of my life, powerful scheduled drugs to control the disease, and to have to take each day as it comes, knowing that some days I simply won't be able to manage the things I had planned and will have to cancel. I will always be ill. It's hard. It's confronting. It's pretty damned scary. I'm in pain. I can't remember the last time I slept through the night so I'm always tired. My patience - never my most outstanding personal characteristic - is in very short supply. I just don't have the energy to be patient with so much of what life can throw up. Nor do I even have the energy to lose my temper when things really jam themselves up my nose. That pisses me off - that catharsis of having a really good big temper tantrum (regardless of the grovelling afterwards that might be necessary) is lost to me because I just can't afford to waste emotional and physical energy like that. 

I don't know if I've made a lot of sense in this post. I'm still not really OK. I'm still really struggling with this. I still haven't talked to Dragon Dad about it because he's SO preoccupied with the pressures of his new job and the targets he needs to meet that his ability to sit through me fumbling around trying to make myself clear is just not there right now.  It's also something that will worry him and add to his stress, which is already considerable. So I'm telling anyone who reads this instead! Because I have to say it all in some way before I implode, because until I own it, I can't work my way through it. So here it is, in all its messy glory... Watch this space. Now I've opened the dam gates, there will probably be more to come!
 

To wrap up, here's one of my recent photos - because it's far nicer than a photo of my arm with a cannula in it, or a photo of my current meds, or anything else RA related... It's a sunrise taken from our back yard one morning a few weeks ago - straight off the phone camera too - no editing. It really was that intense and beautiful!

Saturday, 13 May 2017

The rheumatology review...

Well, that was a big, big day.... Note to self: in future, make rheumatologist appointments on a different day to infusion day. Part of me though, oh, it'll be OK, because it's all in the same building, so I don't need to run around, yada yada, yada... But I did have to hang around much longer than if I were just doing one or the other, and I was hanging around after the infusion...which meant the side effect headache was kicking in by the time I was finally heading home, and I was on the road at the time I'd usually have been falling asleep on the couch. 

So I didn't make it to tai chi that night - and I really need to find the You Tube video of the Beijing 12 we're learning so I can review the first two parts and learn the third part which I missed... And do that over and over to fix it into my non-retentive head, before loading up with the fourth section this week! 

However, it's been a reasonable aftermath to the infusion this cycle. The headache is largely gone. I still have an exceedingly stuffy head - who else gets really snotty sinuses as a biologic side effect?? But I'm back down to 100mg Tramadol morning and night - last cycle was the first time in months that I'd managed to achieve that, and thankfully, after a few days of it needing to be bumped up, I'm back down again. 

One of the things that happened with the rheumatologist this time round was X-Rays of my feet and ankles - which have been particularly vocal for some months now. Apart from anything else, the images give this new rheumatologist a base line to work from. I have two sets of MRI images of my hands, taken around a year apart, but they're from a few years back, and they're my last rheumatologist's baseline images. 

The good news is, there's NO damage in the joints of my feet and ankles. After a bit over three years of biologics - two and a bit on the current one - what that means is that, despite ongoing pain at varying levels, it's actually doing its job - i.e. slowing down the progression of the disease. Those MRI images were of my hands and wrists, and were part of what we needed to confirm diagnosis for the biologic applications, because my blood test results are often quite ambiguous. They showed erosions - holes - in bones in my hands and wrists, caused by inflammation. That happened over the years when the RA was - so I thought - so mild that I wasn't on any DMARDs (Disease Modifying Anti-Rheumatic Drugs). Clearly, although the pain levels weren't bad enough to send me to a doctor for anything more than anti-inflammatories and low level analgesia for flares, there was damage occurring. So, to have the levels of pain I'm having but to discover that my ankles and feet are still damage free is a win. We just need to get the pain management working better! 

We're still tinkering with anti-inflammatories. After the last visit, I swapped from the one I was on to a different one. It offers a bit more flexibility for me as it's a fast acting drug, so if I vary the dose, the results of that variation are much more immediate. At the moment, I'm taking one in the mornings. Perhaps if I up that to add a second one in the evenings it'll be enough to get better relief. Upping the pain meds helps, but it also adds significantly to the level of brain fog - and that's definitely becoming more of an issue. 

The thing I forgot to mention at the visit - even with a list for the doctor, things get forgotten - is the pain in my right hip. Back in 2013, when the wheels fell off, I was getting a lot of hip pain - on the outsides of my legs. That ended up being tendinitis which, with heat and a lot of targeted physiotherapy, was cleared up. It took a long time, but it did improve a lot. This is pain in my groin - in the joint. So it means a quick trip to my GP and a chat about possibly X-Raying the hip, or some other kind of imaging, because the pain is fairly constant now, and is waking me up at night sometimes. HOW I managed forget to mention it to the rheumatologist is beyond me - note the 'note to self' above... But there's definitely something going that wasn't going on before, so I need to get it checked. 

Apart from the hip though, the overall result of this latest review was pretty much to keep doing what I'm doing. Maintain the status quo... Which is good, overall - there's no actual BAD news there. But it's also frustrating.

Perhaps the worst thing about chronic illness is that, even when you're doing 'well', you're NOT well. I'm still sick. And I can't honestly remember the last time I felt well. And that gets very frustrating. While it's reassuring to find that the biologic is doing its job, along with the pile of other drugs I'm taking, the reality is that that doesn't mean I'm getting better. Because I won't. All that will happen is that I'll continue to get sicker...albeit that that process is being significantly slowed by the drugs. 

It's a very mixed experience which is very hard to articulate. I AM very grateful for the medications that are helping hold the beast at bay. I am grateful to have found a combination that I can tolerate and that are having a positive effect for me. But it's frustrating that they don't make me feel better. 

Biologics are held to be the miracle of RA treatment that have changed the lives of countless RA patients. And they have. Treated early, RA is now a chronic disease that can be managed and if caught early enough, can have a much less severe impact on the lives of the people who have it. And that's the truth for many, many people. 

However, for those for whom the meds don't work, or those who - like me - got to the big guns meds too late, that's not the case. I can't work any more - not in a regular job for someone else. My body just isn't reliable enough for me to commit to being somewhere for regular hours every day. I need to build up the freelance work I do so it can earn me a better income - perhaps then I won't feel quite so flat about the whole work thing. There are many forms of exercise I can no longer do. There are activities I can no longer do - and they're not all big things like climbing Machu Pichu... Managing a set of tongs when frying something for dinner is becoming a HUGE issue. And I'm still on the lighter end of the severe scale. 

I can still walk, albeit with pain. I can drive, ditto. I can shower and dress myself - there *may* be swearing sometimes...but I can do it. I have friends who can't do these things, or can't do them without help. So again, this isn't so much a complaint as a statement of circumstances, and something that is part of a complex picture for those of us with RA. 

There is an enormous spectrum of degrees of pain, disability, effectiveness - or lack of - of the drugs, and so on. And that's a big part of the picture that is so misunderstood by so many people, including doctors.

Wednesday, 26 April 2017

RA life - the things that are keeping me sane.

I wrote recently about my general sense of being a bit stuck emotionally and mentally at the moment and about managing depression and the potential fallout, and have been reading a number of blog posts and articles by other people about slumps, losing mojo, self care, etc... Lene Andersen wrote about her current fatigue levels, and how that impacts on so many levels. Clearly, there's something in the water. 

In those posts of mine, I was looking particularly at a mix of personal, some illness related, and circumstantial elements that are impacting me at the moment. In thinking over it since - given that one of the reasons I wrote the post in the first place was to put it out there so I'd have to DO something about it - I've ticked a few things off my list (more on that in a minute), and have given myself an almost daily talking to to try and kickstart each day with a more positive outlook. I've also been looking closely at the things that ARE working for me, because sometimes it's all too easy to get caught up in the negatives, and that's a nasty trap. 

The talking to is having mixed results... One of the things that's getting to me is how stuck we are with the house since the move. Any new place needs that settling in time while you work out where to put things, and what you might need to add to make it work. We got some things done - Rumi proofed the back fence so the little monkey couldn't keep escaping; got Dragon Dad's desk set up in the spare room so he had a place to work; bought and put together some industrial shelving to help solve the storage issues in the kitchen (hardware store chic!) and bought and assembled a skinny cupboard to stick in the back hall for pantry storage. And then it ground to a halt, because money...or lack of. There are no built in wardrobes in this house. We had a pair of IKEA ones that work in the spare room and give Dragon Dad some clothes storage. And two chests of drawers in our room that double as bedside tables for our smalls and socks and so on. But I'm still, eight months in, living out of suitcases and boxes - and have a most impressive chair/floordrobe that would do any teenager proud! It's frustrating, and a bit depressing. So, on the list of things still to do is find the energy to go and do a major sort so I can pack away all the summer stuff into suitcases that can be neatly parked in a corner, and reduce the items that I am using so I can make neat folded piles of them. We also - and Dragon Dad actually said this... - need another bookcase because I've still not sorted and properly shelved the books because there isn't enough space - that's around $100, I think...might be doable soonish, I hope. 

In the meantime though, I have done two tai chi classes now, and am paid up and committed to continuing.  My mother would laugh at me - all those years of her telling me I should do it, and me not doing it because she'd told me I should - perverse... I like it. I really do. I crash afterwards - fell asleep on the couch in front of the TV on Tuesday evening after dinner. But the joy of falling asleep because I'm tired because I did something physical - a 'normal' activity that used energy - THAT was wonderful. I'm not finding it too physically difficult - apart from my feet. In the two classes so far, I've tried two different pairs of shoes - we're on bare board floors, so going without shoes altogether can't happen. I have a third pair to try next week...fingers crossed. Otherwise, as Dragon Dad said, I might just have to live with the fact that they're going to hurt. I hunted online yesterday and found the 'Beijing 12' that we started learning this week - because, try as I might, I could not remember the first movement that we were taught. Damned brain fog and inherent lack of remembering physical routines...

Getting past that emotional block about starting something new with strangers was a good feeling too. Reminded me that, actually, I CAN do it. A salutary reminder to get over myself!

Getting back on track with the blog. This my second post this week.  I'll try and keep to that if I can. It does me good to write. To get the stuff in my head OUT of my head! The trick is finding a point of focus so I don't just ramble on, because no one wants to read that. All the stuff I've read about blogging and being a 'successful' blogger make the same point - that the really important thing is regular posts. It doesn't matter whether they're weekly or daily, or something in between, but they need to be regular. While I'm perfectly capable of writing to a brief - including deadlines - one of the reasons I started blogging was to give myself an avenue to write where there weren't structures like that that create pressure. However, to make the blog WORK, there do need to be some, so I'll try...I may not succeed, but I will try.

I've also done some research, looking for new places to pitch work - it's a jungle out there, folks. I have some paid work that's semi regular, but I need - financially as well as creatively - to find other work to do, other places to publish. So I write stuff and send it out - mostly into a black hole. Typically, I've done this in bursts, having a flurry of busy-ness, and sending things, and getting all worked up in anticipation that perhaps this time I'll have cracked it - only to come crashing down as the persistent lack of responses demonstrate that, yet again, there are no takers. So, I'm looking at diversifying that approach a bit with a more balanced mix of things I'm working on, with a different spread of potential destinations. At least the writing itself will be a bit more mixed, and interesting. 

Fat Mum Slim's Photo a Day challenge. I wrote about this when I first planned to start doing it. It's nearly the end of April, which makes almost four months of posting a photo every day in the Facebook group, and on the Dragon Mother Facebook page. In that post, I wrote about some of the reasons that decided me on committing to doing it, and by and large, they're playing out as I thought they would. As the daily drawing practice did (which I've not managed to pick up again so far), it makes me look at the world around me with much more attention. 

There are specific daily prompts for the photos, so there's a certain amount of daily discipline that comes with getting my head around how I'll approach that - sometimes, it feels really obvious but other days it can be a real challenge - and surprisingly difficult! Some of my results have prompted Dragon Dad to tell me that I've got some potentially serious photographic talent - which was hugely gratifying! And also that at some point when money allows, we must find me a good digital SLR camera. At present, it's all being done with the phone on my iPhone - although, I'm far from alone because there are lots of others in the group in the same position. 

I've also been 'fabbed' three times now - for each prompt, the moderators select a number of photographs that they particularly liked and post a collage of them as the pinned post for the next twenty four hours. I've been ridiculously chuffed each time - again, validation, which is nice. Most importantly, I'm making new friends online. I may never meet many of them in person, but I have to say, it's an extraordinarily positive and supportive group of people, and there's lots of friendly chat on comment threads on the photos when people come to comment on each others' shots. And, the thing that prompted this particular post, there are more than a few people for whom this particular activity is enabling them to have something that they're consistently focused on which is giving their lives structure, for whatever reason - and there's a conversation happening on a particular photo today to that effect. So, to finish on a positive note, I'll upload a few of my favourite photos so far. Those of you who follow the Facebook page may have seen them already, or not, depending on how your newsfeed serves up things! For those who WANT to see them regularly and don't follow the FB page - I invite you to do find it and follow. 

Flat lay
Treasures
Fave part of my day - fabbed
Off centre
Macro
Street
Opposites - fabbed

Sunday, 23 April 2017

Fund raising and awareness of RA and other autoimmune diseases - or the lack of...

I've been stopped twice in the last week, at the same supermarket, by people fundraising for cancer research. Now, before anyone gets up in arms, I totally get the need for cancer awareness and fund raising, and am only too thankful for the good work that's been done in the field to improve diagnosis and treatment protocols. 

BUT...and it's a big, daily but, for me... I have an incurable, chronic disease. It's unlikely to kill me, although, severe RA and its co-morbidities and complications can cause death, and has. Ask yourself though, did you know that? Readers of this blog who have RA or another autoimmune (AI) disease probably do, and perhaps some of their friends and family members. However, it's highly unlikely that the average person on the street does. Because, RA is still, in the minds of many, 'just' arthritis. Like their granny has... the odd sore joint that slows them down a bit, and hurts when the weather gets cold. Not to minimise the potential devastation of osteoarthritis (OA), either, but RA is a systemic disease - unlike OA. As is Lupus, Sjogren's Syndrome, Psoriatic Arthritis, Spondylising Ankylosis, Type 1 Diabetes, and many, many more. And not a single one of them can be cured. 

Before writing more, I'd just like to say that this is a really hard post to write. I don't want to come over all whiney, and 'poor me' - that's not the aim of the exercise at all. I don't want it to sound like there's some kind of competition between cancer and autoimmune diseases, because there's not. I also don't want to offend anyone - that's the last thing I want to do. I just want people to stop for a moment and consider what I'm saying, and try to understand where I'm coming from, because that's what real awareness is about. 

So where the hell are the tables with bright faced young things raising funds for autoimmune diseases? Seriously...where? 

There aren't any... 

I don't donate to cancer research. Not because I don't think it's worthy of my money. But because thousands and thousands of people already do, and there are more foundations for different types of cancer than I can poke a stick at. So many labs devoted to cancer research here and all over the world, doing excellent work and making important breakthroughs regularly. Which is marvelous. And necessary. 

When it comes to autoimmune diseases though, that's just not the case. I honestly don't know why that is. It can't be based on the numbers. The Australian Institute of Health and Welfare report from 2014-2015 reported an estimated 407,900 people in Australia have Rheumatoid Arthritis alone. That's - if my maths are correct - something around 1.76% of our current population. That's NOT a small number.And goodness only know what the current numbers might be.

Is it some sort of twisted kind of 'glamour'? In a world that is being fed by dramatic press headlines, those depicting celebrities fighting cancer appear to be increasingly frequent. And there is that concept of the 'brave fight', particularly when, tragically, someone dies...losing that brave fight. 

More celebrities have been 'coming out' about their autoimmune diseases. At the same time, their experience can look very different - and I've seen comments on forums where people make a point of making that an issue in itself...ie, those people, regardless of the diagnosis, have more means than the average individual to make life easier despite the diagnosis. The same could be said for celebrities with cancer, I guess. But ultimately, we're still all people, and no fame and/or fortune can change the fact that being sick - whether it's cancer or an AI disease just plain sucks. 

I wrote about this when my dear friend Lizzie died from ovarian cancer. It's her birthday today, along with No.1 son... Lizzie had also been diagnosed with RA some time before the cancer diagnosis. Ironically, I have seen in RA circles online people who have RA and are struggling with the kinds of lack of support and understanding that are common for many making the statement that they 'wish they had cancer' - on the basis that cancer HAS a level of awareness and understanding that autoimmune diseases don't have. There's no way that Lizzie would have subscribed to that particular idea. She was all too aware of the different playing field offered by her cancer diagnoses. Tragically, as is the case for all too many of those diagnosed with ovarian cancer, the diagnosis came far too late to offer her reasonable odds of survival. So, I've never wished I could have cancer instead of RA, just to have more awareness. 

Awareness and fundraising are important though. Incredibly important. Research takes time, and requires money to fund staff and facilities so that it can be done, and done thoroughly. I did a Google search for current research specifically being done for RA in Australia, and found two main places. TWO. Two sites of research for a disease that close to half a million people in this country have. One is the Garvan Institute in Sydney, and the other is the University of Queensland. The latter is working on what they're calling a 'vaccine' for RA. I'm not entirely sure how you vaccinate for an AI disease, to be honest. From what I've read though, they've tackled the research along the lines that I've always thought seemed most logical - figuring out how to turn OFF an autoimmune system that has got stuck on overdrive...because by doing that, effectively, you stop the disease process entirely. Current treatments only slow that process down by inhibiting the overactivity. The UQ model aims at flicking an off switch to stop it.

Garvan, on the other hand, are looking at a treatment that sounds as if it may work similarly to current biologic drugs, but it is targeting cells in the inflammatory process rather than the autoimmune process, in a way that can be effective earlier in the immune response that's attacking the patient's own cells. It could have a similar effect to the UQ model in shutting down the disease activity altogether. 

What isn't clear with either project is whether the proposed treatments are something that the patient then needs to be on long term to maintain the status quo - which, to my way of thinking, puts them into a treatment classification rather than a cure. I don't know if - should they work - you'd then have to remain on that treatment, because coming off it again would allow the disease to start up again.

Overseas, there is work being done with an electronic implant that stimulates the vagus nerve - a project that started when a neurologist (I think - I can't find the original article I read about this) started to wonder if it would be possible to interfere with the inflammatory system via the nervous system. The vagus nerve controls TNF production (tumor necrosis factor, a chemical in the system that is a primary component in the inflammatory response - the first of the biologic drugs on the market, which are still being used, are TNF blockers) so the implanted device sends a signal to the vagus nerve which stimulates a response that interferes with that process - effectively reversing the disease. Early human trials have had some promising results, although they've been relatively small samples. At this stage, the consensus appears to be that it's potentially a treatment that can be offered when a patient has failed to respond adequately to current drug protocols, as it's invasive, and once implanted, rules out future MRI scans (a major diagnostic and monitoring tool), due to it being metal. Again, like the two previous projects, my question is, does that mean that once implanted, the device has to stay put for the rest of the patient's life? Is the 'cure' conditional on the ongoing presence of the device?
Receiving the infusion of the biologic drug that's keeping my RA controlled.
While these projects are all encouraging and indicate to me some logical new approaches in research for RA, given the numbers of people who are affected by the disease, they're disproportionately small. And awareness of the disease and its affects on the daily lives of patients certainly isn't on the increase. On the television last night, the Ride for a Cure was being advertised. It's an annual long distance mass cycling event that people can do to raise money for cancer research. A friend of mine did a similar one last year, riding from Canberra to Sydney over three days. Dragon Dad, being a cyclist, voiced the idea that he'd like to do it one day. He did do a two day ride that was to raise funds for cancer research a few years ago - 100kms each day. I forget how much he raised, but he had to raise a certain amount before he'd even be eligible to ride. When No.1 Son did the Noosa Triathlon last year, he was racing to raise funds for cancer too. 

Then, last year, I stumbled across a cycling event for RA that popped up on Facebook because of the algorithms that govern my newsfeed. I clicked on the page, and there it was - a ride from Canberra to Adelaide to raise funds for RA...only it was nearly over, and I'd heard absolutely nothing about it via any of my channels prior to the event. When I hunted around online, I found a reference to it on the Arthritis Australia website two days before it was due to start...but no active promotion, which I thought was appalling. The event itself was instigated by a cyclist whose partner has RA. In the conversation I had via Messenger on FB, they said it was a one off. MAYBE they'd repeat it, but that wasn't a given. Dragon Dad was really disappointed - he'd have gone and done the ride with them had he known. He'd have promoted it like crazy too, because that's how he rolls. He'd certainly have contacted all the television stations and newspapers to try and get coverage - as there is for the cancer ride. I don't know how much money the cyclists raised - there was no follow up on their FB page or the Arthritis Australia site. Given that that's our mainstream agency in this country, that's just not good enough. 

Both of the times I was accosted at the supermarket last week, I stopped and said that no, I wouldn't be donating, and I told the girls why. The first time, with two girls on the stall, one of them introduced herself and asked my name, then told me she totally understood, as her mother had recently been diagnosed with MS, which has now been classified as an AI disease. She wished me well. The other girl with her tuned out and looked as if she was trying to be anywhere else but there at that moment. Similarly, the second time - one girl on her own - she looked uncomfortable, and clearly didn't know what to say, so said nothing.

Somehow, this status quo has to change. These diseases, collectively, affect millions of people in Australia. There needs to be better research funding, because if cures CAN be found, many of those people will be able to re-enter society healthy and capable of living fuller lives than many currently manage. It will mean many will be able to go back to work - something so many of us can no longer do. It will mean fewer people are living with chronic pain. It will mean so much for so many... So, next time you have an opportunity to donate to medical research, think about the diseases that don't receive so much funding, and maybe pick one of those.