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 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