On Being a Good House Guest

Growing up, we didn't have holidays as a family, as such. I have a hazy memory of our family joining friends of my parents at their beach house one summer. And after we moved interstate, we did a lot of travelling back to our home city to stay with various family members, but we didn't plan holidays which meant hotels or the like, so we were invariably staying in the homes of extended family members if we were away from home. 

As an adult with my own home, I've hosted friends and family and been a guest in other people's homes over the years too - mostly lack of funds has made that a necessity for me, as hotels have been largely out of reach. Dragon Dad has had a different adult life, and holidays with hotels have featured in his recreational time, so there's been a bit more of that for me to experience since we got together. Also, he's not all that keen about staying in other people's houses, so his preference, even if the reason for our trips is to see family and friends, is to stay in a hotel so that we have our own space when we're not actively spending time with people. 

It's not always easy hosting people in your home, and, come to that, it's not always easy being a house guest. While this post is a bit of a rant - having been woken at an ungodly hour this morning by our departing house guests, who opened the bedroom door to do that while it was still dark - the tips I'm going to share on being a good house guest are not exclusively a response to our recent guests - they come from a myriad of people over the years. 

Not our spare room, but isn't it pretty?

1. Be clear about your arrival and departure dates and times

Hosts need to plan any number of things around having someone stay in their house - preparing a room, or rooms; shopping for food; coordinating different activities; and so on. It is not considerate to be vague about when you're arriving and how long you're intending to stay. It was the day after our recent guests arrived that I discovered they were staying for the week...

2. Let your hosts know if there are specific food needs required

One of our recent guests has a nut allergy - which I discovered by accident (fortunately before I'd added the nuts to the main course of the first night's dinner) when the other one passed the kitchen bench where I was preparing dinner, and noticed the bowl of nuts sitting amongst the ingredients. Allergies can be life threatening, and no one wants a food allergy incident on their conscience. There are a stack of dishes I make with nuts in them that aren't as obvious as that night's dinner, so we could have had a real issue. The next person we have coming in a few weeks is a vegetarian - something she was clear about in our very first conversation. She has no issue eating in restaurants that serve meat, or having people at the same table as her eating meat, but she doesn't eat it. She wants to take us out for dinner while she's staying, so has asked me to check out some possible venues that will make that an easy option that's nice.

3. Let your hosts know the sorts of things you plan do to while you're staying

This can be tricky. Ostensibly, people come to stay to see you, as well as whatever sights and activities that may be fun to see and do. But there does need to be some coordinating of routines, and making sure that everyone's happy. If your priority is to be always out and about, doing stuff that's of no interest to your hosts, it may be more sensible to book a hotel room, and arrange to catch up at a specific time for a meal or particular activity. Otherwise, your host can feel as if they're merely providing a free bed, and that's a bit rude.

4. Be observant of your host's routines

While you are on holiday, your hosts may still need to be attending to their regular routines - work, school, medical appointments, etc. That may require early nights, mean that they have limited time to spend with you that needs to be prioritised when you make arrangements for your own activities, and or that there will be times that they really aren't available which can't be altered. Check in with how best to arrange time to spend together, and stick to that. There will be time for you to do your own thing while your hosts are at work. Be aware that they have probably been looking forward to seeing you and spending time with you, especially if you've not seen each other for a while, and that they will be disappointed if you don't make time to do that.

5. Be respectful of household customs

Remember it IS your host's home, not a hotel. Don't just come and go without being mindful of things like mealtimes, if you know that your hosts make a point of regularly having sit down meals together. Unless you say otherwise, they will be expecting you to be part of that. 

6. Offer to help out

You've got free bed and board for your trip - it is common courtesy to offer to help with meal preparations, or cleaning up afterwards. As a kid, staying in my godmother's house, it was expected of us kids to clear the table and stack dishes - and when we were tall enough, to wash them after dinner. My mother and godmother had shopped for, and made dinner for up to ten people if my whole family were staying, so pitching in and helping with clean up was a completely reasonable expectation. 

7. Do some research about how to get around where you're staying

You may have a car, or you may need to use public transport, or a combination of both while you're staying. Don't just expect your hosts to drive you around, particularly if you're off doing your own thing. Refer back to point 4...

8. Bring a gift, or take your hosts out for a meal, or both

Something to say, 'Thank you for having me/us.' It doesn't have to be anything madly extravagant, or over the top. It's the gesture that's important. No matter how much you love your hosts, and they love you, it isn't always easy to share other people's space. Common courtesy requires a gesture that says 'thank you for your trouble'. 

As I write, we have someone coming to stay in a couple of weeks for a few days, another over the Christmas break, and a possible third just after that. We have a spare room that's set up for guests - it will, once we find the right desk, also eventually double as Dragon Dad's office, but for now, it's just the spare room. So it's easy to set that up for the incomings. Feeding people is one of my joys, so having extra people to feed never bothers me. And seeing people I've not seen for a while is always nice. So, at my end of the equation, I do everything I can to make our guests comfortable. And that's the other part of having guests - doing what I can do as a host to make their stay pleasant. We've stayed with people, at times, where it's been horribly clear that they really don't like having people in their space, and that can feel very awkward. I guess what it comes down to in the end, is that sharing space with guests, which ever side of that you're on, requires courtesy, mindfulness, and respect. And then, it can be nice.

 

Rheumatoid Arthritis and the Complex Issue of Disability Pride

For many many years, with very mild disease, I was able to live my life without too many disease-related issues getting in the way. It's been a huge eye-opener to find myself in a quite different world since that changed. I find myself living with an increasing degree of disability, and trying to manage a whole lot more pain - something I didn't really consider beyond my initial panicked state during the early times just post diagnosis. 

Among other things, it's brought me into a company of writers whose schtick is disability-based, whether their focus is on their particular situation, or they're looking to create a bigger reach, with awareness raising and advocacy. It's been a steep learning curve, at times; sometimes challenging and confronting, and at other times, to be brutally honest, more than a little bit irritating. As is the case in just about any community - be it professional or other - there are concepts, catchphrases and jargon terms to be found. 

There's one idea that seems to be a growing area of discussion in chronic illness and disability circles - that of the notion of 'disability pride.' I struggle with it, to be honest. Essentially, it points to people's disabilities not being a deficiency of any kind, or something to be ashamed of; that the disability itself is integral to the identity of the individual, and that there is pride to be had in that individual identity, disability and all. 

It's something I've seen in documentaries about people with varying disabilities. I distinctly remember a series of programs on SBS TV looking at the lives of deaf British teens as they transitioned from schools - some mainstream, some geared specifically to deaf students - into the workforce or higher education. There seemed to be a range of ways by which the kids presented themselves and the aids they chose to use, or not, to aid communication with the hearing world. There were a significant number who chose not to have cochlear implants, or to learn to lip read and to work with speech pathologists to learn to speak - preferring to only communicate via signing. Those who did spoke about that being THEIR language, and that it was part of their identity, while speech and lip reading meant they were leaving that identity behind to enter into that of the hearing community. That's just one particular disability and one group of teens in a single documentary series, and clearly the choices people make are going to be as diverse as their disabilities and life experiences offer. 

One feature of the discussion I'm reading across a number of different platforms is the feeling that many people aren't looking to be cured of their disabilities. The importance of their identity as a disabled individual is far more important, as the notion of a cure suggests that as a disabled person they are somehow deficient and need to be 'fixed.' I think this is where there is, perhaps, a major schism within the disabled community when it comes to the origins of the disability. Whether its something congenital, or acquired, and then if it is something acquired, whether it is due to an accident or a disease. Across that spectrum, there are many, many lived experiences. I don't think it's possible to lump the lived experience of that range of difference into one basket, and I think that having a sense of pride in a disability is going to be something that varies widely depending on the cause of the disability. 

For myself, the idea of my incrementally acquired disabilities that are slowly increasing as RA takes its toll on my body, is something I have real difficulty taking pride in - and speaking with other people who have RA, I found a similar struggle. One close friend summed it up perfectly, I think, for those of us living with painful, degenerative disease and resultant disability:

My disability is caused by a degenerative and extremely painful disease. I do believe the level of function a person with a disability has is crucial to this debate, and the level of pain that a person is forced to endure. I have read that some believe that to want a cure is to equate the term disability with ‘defective’ and we should instead make it a proud part of our identities. That’s a huge leap and a very hard thing to do when you are in constant, severe pain, which requires round the clock morphine! When you are completely dependent on medication, friends and paid carers to exist in any meaningful way. So no, I have no pride in my disability causing disease! I doubt anyone in my position would. Given the choice, I’ll take a cure, thanks. Not because disability is ‘defective’ or makes me a lessor person, but because I want a better quality of life and I don’t want to live in severe pain forever! The term disability is far too broad to even try homogenise us into one cohesive group. My son has autism. He doesn’t need to be fixed or cured, but he does need support. My friend is deaf and is offended at the idea that anyone would consider her as disabled at all. My daughter’s friend has a cochlear implant and wants desperately to hear! It’s personal. And it needs to be allowed to be personal. 

One very important thing at the end of that quote is that it's personal. Everyone's experience is different. There's no one way to be disabled any more than there's a single way to be anything else. Unfortunately, as I've found a lot in the online world, there can be a huge sense of competition around illness and disability. It can be tricky sometimes to put forward a differing point of view, or a different slant on a similar experience without being shot down. It's one reason it's taken me so long to write this post, because I've been wrestling with the concept of disability pride for a long time now, and the odd times I've put my thoughts into words on discussions threads, I've perhaps not put them as clearly as I might have - whatever the reason, I've been on the pointy end of people's displeasure. There HAS to be room for everyone to air their own experiences, and there needs to be respect for the differences. We don't all live the same lives, or have the same disabilities, or the same challenges. 

I took my questions to a group I'm involved in and asked a few other people as well, and found similar viewpoints to my own - mainly because I asked the question of others with chronic, painful diseases, rather than people whose disabilities have different origins. I wanted a broader picture from within the group of people I know live more closely to the way I do, with similar challenges and difficulties. I can't speak for an amputee, or a paraplegic, or a blind or deaf person - because I don't have their experience of what that's like. I can speak for people with RA and similar autoimmune diseases, because it's something I know all too well. The picture is different to the one I'm seeing in the wider conversation:

These days still no pride but I feel a sense of belonging - in this group; and conversely a sense of not belonging completely in the rest of my world. I do feel proud of my coping skills and determination in spite of my issues but no pride in the actual disability ... I think the pride is to be had in the sense of WHO we are WITH our disability, but not OF the disability itself.

And:

I sort of feel it is different if actual pain is involved in the disability ...  yet someone who is deaf may refuse a cochlear implant as they don't feel they are disabled by lack of hearing and are happy to be non hearing.. that is quite common. So certainly a person with painful chronic illness would more than likely be happy for a cure whilst a deaf person may find it insulting to suggest this ...

And this:

... there's a lot of shame around disability and around having a chronic illness ... Disability pride is about rejecting that, accepting who you are and not make apologies for that. 

While the notion of not being ashamed of having a chronic illness and associated disability is powerful and, to me, self evident, it is a big issue for many people in the chronic illness communities. For many, the fact that they feel they can't contribute as productively as they might be able to if they were healthy is an emotionally painful part of their existence. Likewise, those with children at home often voice their sadness about not being able to parent they way they might perhaps have liked to. For many of us, while watching the Paralympics was a joyful activity, because seeing people overcoming the challenges of disability to compete at such a massive event was wonderful, the reality for a lot of people with chronic illness is that those activities are not physically possible. In fact, Rheumatoid Arthritis, while it can and does lead to many people using wheelchairs full-time, isn't on the list of disabilities that qualify for participation in the Paralympics, although Multiple Sclerosis, now classified as an autoimmune disease, is. 

RA, and other autoimmune diseases that include an arthritic component as part of their presentation, are painful and debilitating. Disability occurs as the disease slowly destroys joints and bones, but the pain of the disease itself can be appallingly disabling too. With severe advanced disease there can also be organ involvement, leading to even less active function. The disease is incurable, and current drugs can only slow its progression. I don't know a single person with RA who doesn't want a cure - to be done with the disease for good. And therein lies a critical difference between those of us with disabling diseases, and those with disabilities that are not caused by disease, which isn't, largely, taken into account in the broader conversation. 

There is archaeological evidence that autoimmune diseases have been around for a very long time - I found this article about an Italian woman from the Renaissance period just this morning - and while there are better medical options for people with RA now, it's still incurable and will, in the lifetime of the person who has it, continue to cause degeneration and varying levels, some extreme and severe, of disability. So, rather than blowing ourselves up with a sense of pride that most of us don't feel about our disability acquired through this disease, we really do want a cure, for preference. 

... I want a cure because I would like to not have my body destroyed, and my life expectancy affected, to not have the pain. I don't want a cure because I am ashamed off what I look like or the fact that I have a disability. I'm not rejecting disability. I'm rejecting the illness that ravages my life.

For me, my disability isn't a matter of pride. Nor is my disease. Those are just things that have happened. My sense of pride comes from my achievements over a lifetime of throwing myself into new situations and seeing what I can learn, and then coming out the other side and doing something with that. As one of the people who contributed to this post said, there's a real sense of pride for many of us, myself included, in achieving the things we do despite the pain, the disability and the limits the disease can create. I'm not a lesser person because I'm sick, and I don't think that what I have to offer is second rate. In fact, until I started to unpack the concept of disability pride, I had never questioned that! All I've ever asked is that people accept me as I am - however that is - and be respectful. And that started long before I got sick. It hasn't changed. 


Many thanks to those who engaged in the conversations I had prior to writing this post, and for your contributions. You all helped me a great deal in clarifying what I wanted to say, and I hope I've written something that is true to what you've offered me. 

Endless drug tweaking with Rheumatoid Arthritis

"You're taking a LOT of stuff,", said my new GP this morning, as he reviewed the list of medications I'm currently on...

Yes, I am. As I said to him, I have two 'breakfasts' - the one on the plate, and the one in the eggcup...and then repeat the eggcup with most of what was there in the morning 12 hours later in the evenings. I walked out of the consult with a prescription for yet another medication, as well as instructions to go buy slow release paracetamol to add to the arsenal of pain meds. So, the eggcup will be that much fuller after today. 

Despite the lineup of current meds - two DMARDs (Disease Modifying Anti-Rheumatic Drugs) and a biologic (all three immuno-suppressants designed to modify the current overdrive of my malfunctioning autoimmune system), anti-inflammatories, a drug to protect my GI tract from said anti-inflammatories, three different dosages of a slow release pain med so I can adjust as required, a pain med I can take to boost the slow release one when it's insufficient, a muscle relaxant for intermittent use, and Vitamin D to aid bone strength, my shoulders are deteriorating frighteningly fast. This is a bit new. For a long time, my shoulders and hips were fine. Now, they're rather less so, and the shoulders are much the worse of the two. 

I don't see my new rheumatologist until the end of this month, after the next infusion of my biologic. I've had to bump up my regular analgesia to cope, and add the booster of the short release painkiller to manage the nights. I'm sleep deprived, foggy from the extra analgesia, and fed up with just how much medication it takes to keep me THIS good - which really isn't marvelous. 

So, off I went. Thinking that, perhaps, it would mean a shot of cortisone to the shoulder joints - something that can have pretty impressive results, so I'm told. As a needle-phobe, I never jump at the chance to have one stuck in me, and have only ever had this particular shot once before, to my gammy knee. And yes, it worked, and very quickly. But I've reached desperation point. 

Instead of the shots, I walked away with the new script and OTC drugs and instructions to give it a week to see how I go, and then perhaps do a short burst of oral prednisone...sigh. It took me a year - a YEAR - to taper off prednisone after the last burst. The GP is saying a five day burst, if necessary, so I'm not looking at that scenario again, but still...bloody pred. My MOST disliked drug option. 

The needle-phobe part of me is hugely relieved to have not had to face the needles. But the rest of me is frustrated by the lack of a clear-cut, quick fix. Cos, ultimately, I want to know what the hell is going on in my shoulder joints, so I'll be asking the new rheumatologist, when I see him, whether getting some imaging done would be a sensible thing since this has been going on for months now, getting increasingly worse. Because it MAY be something for which there is a specific treatment that could make a big difference to my every day, and the nights. 

But this is the everyday experience of this disease. The one that people, in the main, just don't get. The day to day pain that's never stable from one day to the next; the unpredictable effects of so many drugs, on their own and in combination with each other; and the constant frustration of never feeling actually well, despite the myriad therapies. 

I AM thankful that the doctor really listened this morning, and zoomed around online really trying hard to figure out a possible solution. So I'll give it a go, because I'd really like to feel better than I've been feeling, but what I wouldn't give for twenty-four hours of NO pain, some energy, and a nice day to actually enjoy it...

Rheumatoid Arthritis - when everyone else knows better...

Canadian blogger, Lene Andersen posted a link to one of her #RABlogWeek posts on Facebook this morning - the first of the daily topics, Starting Stories (read Lene's post and others from the many people who took part in the event HERE) - with the suggestion that people continue the conversation with what they could contribute about starting over with chronic illness. She and I had both written about something other than our original diagnoses in our posts for the event, as both of us had dealt those elsewhere at other times - you can read mine HERE, and Lene's HERE. In mine, I'd written about the huge upheaval my RA caused in my life when, after 20 years of mild disease, it suddenly became aggressive, requiring much more intense treatment very quickly to regain control of the disease. Lene wrote about the mental and emotional shifts she consciously made after starting biologic drugs, which, she says, gave her back her life. 

It's those mental and emotional shifts and growths that are so very necessary when there are big changes that happen in our lives. Living with a chronic illness means there can be a permanent level of uncertainty and worry about the future, as well as the challenges of everyday life. That in itself can be quite tiring, on top of the pain and and general sense of not being well, and the fatigue that is just part of a disease like rheumatoid arthritis (RA). Then there can also be depression, frustration and loneliness to deal with as well. It's a lot for anyone to have on their plate, and can all get quite overwhelming at times. So, how to deal with all that?

For myself, it's come down to one basic thing that overrides all others: learning to stop catering so much to other people. As a young girl and adult woman, my conditioning has been very much about care taking other people, making sure they're OK, and putting them ahead of myself in order to achieve that. Now, there are times when that is entirely valid - attending to a small child, or a sick person, for instance - but those examples usually have an end date to them. The general expectation that women will always put others ahead of them, however, doesn't always feel like it will come to an end. Couple that sense of what can be unrealistic expectations from others when someone is chronically ill, and it can take on an entirely different aspect. 

Illness can make many people uncomfortable - being around it, that is. It can prompt - for the sick person - a lot of unwelcome suggestions and the other person goes into fixit mode, because if the illness can be fixed, it'll go away, and everything will be 'normal' again, right? For those who are around the sick person regularly - family and close friends - that can be incredibly frustrating. They WANT us to be well again, for our own sake, as well as their own. The trouble with that, is that RA is incurable. The treatments that currently exist are aimed at slowing down the rate of the disease, and hopefully preventing damage and disability. They're not uniformly successful. Everyone's RA is different, as are responses to the drugs. The information that's out in the public domain varies too, depending on the source, and there are far too many people peddling new-age 'cures' that have nothing to do with good science or medical practice and altogether too much to do with making money from vulnerable people. 

Consider this exchange I had on Facebook chat yesterday morning while in the middle of receiving my current biologic drug via infusion (edited to focus on the pertinent parts of the exchange):

"How are you? I hope you are flare free, unless you are wearing flares."

"LOL! Just having the infusion of my biologic drug."

"Biologic drug?"

"Yep. Once a month. Whole class of drugs that were created over the last 15 years or so to treat autoimmune diseases. It targets the T-cells and interferes with the autoimmune activity - which is in constant overdrive. Slows the progression of the disease."

"Hope the drugs are working and not doing you harm."

"Minimal side effects; and working reasonably well. More harm to be had by letting the disease run rampant with no checks..."

"Long term effects. Of the drugs."

"Long term effect of the drugs is controlled disease. If unchecked, it can damage major organs as well as joints. Without them I risk permanent damage and disability."

"OK. Take care."

On the surface, the conversation sounds as if he's just concerned for my wellbeing. The wider context is that he's given to posting stuff by David Avocado Wolf, a well known figure on Facebook, who frequently posts memes and articles supporting what I call woo (unsubstantiated, non medical treatments and supplements that purport to cure people of any number of diseases) as well as anti-vaccination material, and conspiracy theories about 'Big Pharma'. We've had conversations prior to this one about the drugs I take, and my sense is that he largely disagrees with the choices I've made medically. Having said that, he's not knowledgeable about either the disease or the medications used to treat it. 

There was a time I'd have edged my way out of the exchange, not taken him on, and opted to not put anything forward that was remotely contentious. And I'd have gone away cranky and upset with myself for not standing up for myself. Those days are over. It's MY life, MY disease, MY choice, MY treatment, and MY business. I don't have to mollify others, or justify my choices. I don't have to do it to make them more comfortable, or put myself in a 'better' light with them. There's no requirement of me that I build them up by ascribing to something they say that I don't agree with, just to make them feel good. This friend is not in a great space at present, having recently lost his father. I was aware of that, and in the bits of the conversation that I didn't include here, I checked in on how he was travelling. Being aware of his fragile state, I was careful - for my own sake as much as his - to be polite, but I wasn't going to back down either. I feel that his last comment - which was the end of the exchange - is telling. There's no real acceptance of what I was saying about the drugs in question. That's a back off... 

As for many people, these drugs have changed my life. Even the treatment methods with DMARDs (Disease Modifying Anti-Rheumatic Drugs) have changed since I was first diagnosed. Back then, they were administered one at a time. If one wasn't effective, it was stopped and a different one started. Now, if one isn't particularly effective, it is maintained and another one ADDED. It's been found they work better in combination. That was the case for me - I take two DMARDs, one of which I'd taken twenty-odd years ago to no avail. In combination with the second one, it gave me, on a good day, a 50% improvement on where I'd landed when the disease went berserk. That wasn't enough though, and required a high dose of oral prednisone and periodic booster infusions of prednisone to give me more mobility and less pain - a situation that couldn't be maintained long term. Adding the biologic drugs has made all the difference. I'm still not 100%. I may never be. But I'm so much better. 

The thing is, even during the mild period of my illness, when I didn't need such hard core medication to function relatively normal, the disease was progressing. The MRIs of my hands ordered by my rheumatologist showed synovitis (inflammation of the synovial membranes in my finger joints) and erosion of bones in my hands - the latter being permanent damage. Bone eroded away by disease activity. That happened during that largely unmedicated twenty years. I hate to thing how much faster it could happen if I were unmedicated now that the disease is much more aggressive. The image below (not the image from my MRI) shows an example of the damage that can happen with RA.

For me to move forward and find a way to live with this disease and all its daily challenges, I need to focus on myself in a quite new way. I need to be able to feel confident in the treatment choices I make in conjunction with my medical team. I need to know that I'm making the best possible choices based on the best information that can be sourced. And I need, most of all, to have those choices respected. I wasn't disrespectful of my friend's point of view. He's perfectly entitled to hold it. However, that has to be reciprocal. I'm not going to cater to people who, with the best of intentions, project their ideas and feelings about treatments on me, when they really don't know what they're talking about. Instead, they will hear from me exactly why I make the choices I do, and what the consequences would be otherwise - respectfully. 

#RABlog Week 2016: Post No.4

Daily prompt:

The pain of pain meds: Pain medication prescriptions are hard to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members?

I need to start this post with a disclaimer. While I am aware of new legislation and the growing issues for chronic pain patients in North America in obtaining pain meds, opioids in particular, as yet there has not been legislation passed like that in Australia. However, the climate is definitely changing here and those of us who are keeping watch are concerned that the same misinformation and lack of being heard is going to influence the powers that be to move on creating similar legislation. 

As things stand in Australia, there is increasing pressure on rheumatologists and GPs to refer chronic pain patients to pain specialists - the newest medical speciality on the block. I have to say, given my experience of pain specialists to date, they're not my favourite people. Those I've encountered appear to have a number of preset ideas; one, that chronic pain can't be successfully treated with opioid drugs, and two, that all chronic pain is equal. Rather than try and unpack both of those myself, I'll refer you to an excellent post written recently by Arthritic Chick, as she nails it completely. So, go read that HERE, then come back for the rest of my post... 

OK, so, my pain story.  

For many many years, I managed on NSAIDs and the prescription painkiller Capadex, one of two drugs in Australia and New Zealand that were a combination of Dextropropoxyphene (an opioid) and low dose Paracetamol. They were withdrawn in 2010 due to concerns about inappropriate use, particularly in combination with alcohol. When everything started to ramp up with my RA, it was still possible to obtain Capadex, but it was no longer sufficient to manage my increasing pain, and when I saw my GP, she prescribed slow release Tramadol instead, while writing me a referral to a rheumatologist. 

That worked for a while, but as the disease spun out of control, I was in more and more pain, on top of my decreasing mobility. By the time I was admitted, I was barely walking, and pretty desperate. Due to chronic bed shortages in Sydney at the time, my rheumatologist said to go to Emergency as I would eventually get admitted when a medical bed became available - the only way at the time, as we'd waited nearly three weeks for a bed at that stage. That wait in Emergency will be etched on my brain forever, I think. It was horrendous. With the triage process, I rated fairly low on the priority list. It took hours before I was finally ushered into a cubical, where, thankfully, a dose of Oxycodone was administered, and for the first time in many weeks, I experienced some relief. They moved me into an interim space for overnight stays in Emergency and Dragon Dad headed home. I remember waking sometime during the night, again in awful pain, and again, they brought me Oxycodone, which allowed me to go back to sleep, until very early in the morning, when I was moved to a ward. 

My doctor had admitted me for a high dose Prednisone burst via infusion, to reboot my system and knock the runaway inflammation on the head, but decided to take full advantage of me being an in-patient to re-run ALL the basic tests. They started the next day, and with Murphy's Law operating on hyperdrive, every single bloody test showed up something that resulted in ANOTHER test being ordered to investigate that... All in all, I was in hospital for two weeks, during which time Dragon Dad had to head overseas for a business trip that couldn't be moved. A good friend came to Sydney to be there during the day, as No.1 son was working full time and could only get in at the end of the day. 

I should have expected the pain doctor who stuck his head around my curtain a couple of days into my stay, but he was a surprise. Dragon Dad happened to be there which, in the end, was a good thing. 

First, he had a good look at my chart. Then he asked if he could take a history. Fair enough. Only, it became clear very early on in the process that he was doubting both what was in my charts and the history I was giving him. "Why do you think it's RA?" he wanted to know... Uh...well, because it was diagnosed a LONG time ago, on solid evidence of the disease, and there's been no reason to question that... "But you don't have a positive Rheumatoid Factor..." No, I don't, and never have had, along with the rest of the 20% of RA patients who don't...it's a real thing, and still legitimate RA. He had a real problem with that. "I'd like to check you for Fibromyalgia. Is that all right with you?" Well, yes, it was OK. I don't have Fibro, and he was welcome to find that out for himself, since he clearly wasn't going to take it from me... So he did all the pressure tests and I failed to register any of them - because, I don't have Fibro. 

Then he changed tack. "You've been having a LOT of morphine..." Hmmm, well, here's the thing. I was admitted for out of control disease with severe pain. My then dose of Tramadol wasn't containing it, and if I asked for pain relief, what did they bring me? Oh yes, OXYCODONE... Because that's what they give you in hospital when you ask for pain relief for severe pain. They keep track of it, and within a certain time limit, they don't hand it out. They also check with the admitting doctor regularly to see that he's still OKing it. Which mine was. I wasn't asking for Oxycodone specifically. I was asking for pain relief, and that's what they brought me, along with paracetamol, which enhances the analgesic effect. 

He asked a few more questions around that, the same question reworded a few ways. And then asked the one that was dangerously close to an accusation of drug seeking, at which point the air suddenly went solid... Dragon Dad was furious. Actually, by then he was beyond furious. He'd sat through this interrogation biting his tongue, but at that point, he'd had enough, and then some. As Dragon Dad sat up straighter in his chair, I saw the doctor look at him, and clearly not liking what he saw, he excused himself very quickly and fled.  

Then, Dragon Dad let fly. It's a good thing the doctor had gone, because he was so angry. He had wanted to deck the guy - thankfully he hadn't gone that far. It was the first time he'd seen what was beginning to happen to all too many chronic pain patients.

He wasn't there the next time the pain doctor came back, again, most concerned about the Oxycodone. Asking me if I'd be prepared to try something different. Contrary to the opinion he probably eventually formed of me, I'm not non-compliant. I will ask questions, and I will challenge doctors as to why they're advocating a particular course of action, but I'm quite prepared to try it out once I've ascertained that it's reasonable. So I did all that, and took the first dose of Lyrica he gave me. A few hours later, I was aware of discomfort in my arms, and looking down I found that the insides of my forearms were bright red, hot, and numb... I called a nurse, who looked at it and was most perturbed. She paged the pain doctor - many times through the night and into the next morning, and kept checking me regularly documenting changes. The redness faded quite a bit by the time the pain doctor finally put in an appearance, but the numbness was still acute and mindful of my experience with Enbrel, I was very wary of taking another dose and said so. His response? "I've not read about a reaction like this. It's probably not the Lyrica." Except that the dose of Lyrica was the only thing that had been different in that 24 hours... So I refused another dose. 

"Well then," clearly irritated, "Lets try Gabapentin then. I'll start you on 300mg tonight, and then we can work up to the full dose." With not a little trepidation, I took the pill. Nothing happened immediately, and I eventually drifted off to sleep, only to wake up the next morning weeping copiously - and I couldn't stop. I'm not a crier, and nor do I suffer from depression, but that morning, the world was a black and nasty place, believe me. I could not stop crying, and one nurse who'd been on mornings for the last few days went off to find a Mimms to look up side effects from Gabapentin. There it was, in black and white - can cause depression. The pain doc wasn't having it, though, and insisted on a second dose. The next morning was much worse, and I knew it was the damned drug. When he came in later that morning, I was SO over it. And angry as well, by then. Then, all he could say, AGAIN, was, "This is very odd. I've never read about reactions like this to Gabapentin..." When challenged at that point, even he had to concede that in all the times he'd seen me in the hospital, I'd never been anywhere even close to a state like that. I told him I was done, and I'd really appreciate it if he took himself away and didn't come back. 

When my rheumatologist did his rounds a little bit later I asked him to park and took him through the whole of the previous three days. My arms were still numb at that point - and it would be a bit over a week before I had full sensation back. I asked him if it was possible for him to manage my pain meds, as he had up to that point, and he said, of course. And there we were. And that's how it's been - between my GP and rheumatologist ever since. 

As an interesting end note, I did see the pain doctor again, in the company of the senior pain doctor in the hospital on the day I was discharged, when one by one, all the doctors I'd seen during the two weeks came to take a last look at my chart and sign off on it. The pain doc who'd given me so much grief couldn't even look me in the eye - but his boss seemed nice. But it'll be a long time before I'll happily go see another pain specialist. 

At this stage, I'm still using Tramadol slow release for my pain, and on the whole, it's doing the job. On the good days, I can drop down to 50mg for the morning dose, and 100mg at night. Towards the end of an infusion cycle when the pain is starting to ramp up again, I might need to go up to 150mg for both doses. That's something both my GP and rheumatologist were aware of and had sanctioned. And we've added a low dose of Oxycodone for break through pain when I flare severely. 

Meeting a new GP last week when I needed a script for the 100mg tablets was interesting. He rang Medicare for a single authority script (60 tablets, based on my average daily plan of 100mg twice a day) but wouldn't ask for a script with repeats, as I have been getting from my Sydney GP. He said as he doesn't know me, he won't prescribe anything else until he has my records, and as it was, he was on the borderline with the Tramadol script, but I was clearly knowledgeable about RA and my treatment over the years, so he'd do that much. I'm still deciding if he's the GP I want to see, or whether to head over a few suburbs to the one my Sydney GP recommended for me. I might do that and test the waters there before I decide. 

It does show that there is a lot of caution around pain meds in Australia now, particularly the narcotics. All the knowledge of what works for me will be useless if we end up with laws like the ones that are being created in the US, and the fearmongering about opioids and addiction that is on the rise here won't help that. And from what I've experienced, and stories from friends, the pain doctors aren't on our side.

#RABlog Week 2016: Post No.3

Daily prompt:

Biologics can be scary: What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications?

Well, I can go short and loud on this one, or longer and more involved - and possibly more considered... However, this morning, having had a biologic infusion yesterday, I'm feeling as if I have a bad hangover (without even half as much fun getting it) so to be honest, my end goal is to just keep this lucid!

I knew nothing about biologics at the time everything changed for me and I was suddenly in the midst of severe disease after coasting along with mild disease for 20 years. Even though, this time round, I had Google at my disposal, I didn't jump online to find out what treatments were available because, to be honest, at the time, I was drowning in just how fast everything was changing. I was also trying to get in to see a rheumatologist. And trying to keep working. And NOT curl up in a corner and just start screaming... 

Biologics first became available while I was still doing fine, so the news of these new drugs completely passed me by. And then, when the wheels fell off and I saw the rheumatologist, we were up against the Australian Pharmaceutical Benefits Scheme (PBS) and their qualification requirements for biologics. Unlike the US, where biologics can be prescribed first up, we have to have 'failed' DMARDs before we can even apply to get them. So I started MXT and failed that spectacularly. Had already failed Plaquenil years ago. That left me with Arava and Sulfasalazine, but I still had to take them for six months before I'd be eligible to apply for a bio.

Meanwhile, I'd found support groups online and had read discussions about biologics - and anyone who's done that has every right to feel terrified, frankly. Where drugs are concerned in support groups, I find there is a hell of a lot of fearmongering going on. And a lot of 'big pharma' conspiracy theory. And it pisses me off. It REALLY does. That is no way for someone to be exposed to these drugs for the first time. Most of us are fearful anyway - particularly if newly diagnosed, because we're facing something we're stuck with for life with no real road map about what may happen and how we'll cope. While I was - in online parlance - a 'veteran' of the disease, I've had two very different experiences with it, and the gap between them is huge. So I WAS fearful. 

Thankfully, my wonderful rheumatologist, who insists on collaborative partnership as a treatment plan, provided me with literature to read and discussed bios with me over that six months while we waited until I'd be eligible to apply. He does that with EVERY new drug. And he was there to answer questions, and give me his rationale for why he was starting with Enbrel - it's the one that's been around for the longest time, so there's oodles of literature around, and lots of patients who've been on it. That reassured me no end. He sent me off for all the TB tests and X-rays - a must before starting a biologic. They were all clear. Then he booked me in for a top up infusion of Prednisone and sent me off on a long planned holiday, telling me to forget about the bios while we were away. 

Ultimately, this was an area where he was the expert, and I had to trust him. I already knew, after the MXT disaster, that if anything went wrong, he'd be on it straight away, and that had to be enough. As it turned out, my first four weeks with Enbrel were a miracle. Within a couple of weeks I was walking 'like a normal person' - according to Dragon Dad! And the pain had dropped. I had more energy. It was amazing. Then I got the next four week's shots from the chemist and injected the first of them. The next day, I had a hot itchy spot on my leg at the injection site that really burned. I picked up an over the counter steroid cream, which sort of helped, but not really. Over the next few weeks, the reactions got bigger, so I called in and my doctor brought me in and had a look. He prescribed antihistamines and a stronger steroid cream. They still got bigger and nastier. He prescribed oral Prednisone around the day I did the shot. They still got bigger. In the end, the last one was the size of a bread and butter plate. It was raised, hard, red, hot, itchy and painful. So that was the end of Enbrel - which really sucked because even with the allergic reaction, the drug was working on my RA. 

Humira came next, another TNF blocker. That gave me monster headaches and didn't work for me. The RA started to spin out of control again, and things looked pretty bleak. So, my doctor pulled that one too, and applied for Orencia for me. It took a while before I started to feel better, and continued to do so - to the point that I'd been able to drop my Tramadol from 150mg twice a day to 50mg - huge. And then I plateaued. I was still having flares, albeit of lesser intensity and for shorter periods of time. But I'd definitely leveled out at a particular point. Then, in a discussion online I discovered that if you have Orencia via infusion, the dose is calculated by weight. I rang the helpline for Orencia Australia and had a chat with a nurse there, and weighed myself. It was the first time I've been grateful for the weight gain the drugs have caused, because based on my weight, my dose WOULD increase if I made the switch to infusions. That was just on a year ago, and I did get more benefit from the increased dose - noticeably so.

I'm starting to wonder if it's being as effective now, as I've been less well over the last few months. Mind you, there have also been significant stresses in our lives, including a big interstate move, so that may also be a factor that can't be ignored. So, I've continued on with it, and will do so until I'm due to reapply in November. My old rheumatologist had flagged Xeljanz as a possibility if the decision is made to switch again, but it'll be the new one I see then, so I'll have to wait and see where he's at on that. 

These drugs have been life changing for so many people. Particularly for the people who are able to start them in that six month 'window' that's now been found to be critical for the newly diagnosed if remission is a possibility. Unfortunately, in Australia, given the PBS regulations with bios, prescribing them within the first six months of diagnosis is pretty much impossible, because it takes at least that long to work through the DMARDs, and of course, it's totally dependent on a fast diagnosis, and that doesn't always happen. 

None of the drugs for RA are very nice. All of them have long lists of potential side effects. I have proved to be ridiculously sensitive to foreign substances in my body, and the list of drugs that are on my banned list has grown very quickly over the last four years. Even so, I don't see that as a reason to NOT try a drug. Sure, any one, or more, of those side effects could happen to me. Conversely, they might not, too! Even then, the side effects that do happen have to be balanced against the risks of what the disease is capable of doing if left unchecked. I do know that without biologics, and only on Arava and Sulfasalazine, I have about 50% functionality on a good day. A GOOD DAY. The bad days were appalling. The bios mean that I don't have those bad days very often. They do still happen because my disease is only just being controlled with the combination of drugs I'm taking, but nowhere near as often or for as long. 

As far as advice for a newbie is concerned, my first suggestion is DON'T Google the bios. My second is DON'T ask for other people's experiences online. The volume of hysteria I see online, and advice from people who have eschewed drugs, telling others to just 'eat clean' and steer clear of 'toxic poisons' (AKA RA drugs like biologics and MXT) because, cancer, and goodness knows what else, is frightening in itself, and I can't even begin to imagine the terror they could cause someone newly diagnosed. Being told that the drugs will cause worse damage is wrong, and what they don't say is that without any drugs, we run the risk of permanent damage and accompanying joint deformities and disability. It's irresponsible and creating enormous mis-information. As I said, the drugs do carry risks of side effects, but those side effects may not happen for everyone that takes the drugs, and the dangerous side effects are even more rare. And that's from someone who had a very dangerous reaction to Methotrexate. So I'm not coming from a place of not having experienced bad side effects. 

Also, there's a great resource available online from the Australian Rheumatology organisation. Follow this link and you will find lists of the main drugs used for the treatment of RA, with printable PDF files with drug details, as well as other information. It's excellent, and it's free. The PDFs are the literature my rheumatologist has always given me before I've started each new drug.  

Bottom line, if you want information about a bio, ask your doctor.

#RABlog Week 2016: Post No.2

Daily Prompt:  

Active vs Reactive patients: We usually start as naive and trusting patients, then at some point we realise we must take an active part in our own medical decisions. Tell the story of your own move to active patient, or why you are not there as yet.

Generalisation alert!!

My mother was a great one for dividing people into two groups when she was getting herself into ‘delivering a message’ mode. It used to drive me nuts, because it was always so black and white, and people generally operate in shades of grey. So, she’d have a good laugh on me for what I’m about to write.

In the RA and broader chronic illness community, most of the time, I tend to see two groups of people. The first group are those who ‘live’ their disease. The second group are those who get on and live their lives, in whatever way makes sense, with the disease. As I see it, that’s largely a mindset situation.

From what I see, the people in the first group become focused on the disease first and foremost. Everything they do revolves around that, and in a way, they ‘become’ their disease. Those are the ones I see as reactive patients. The disease dictates how they operate, they wait on what’s happening with that before they make decisions about what they do on a day to day basis, and they defer to their doctors and wait on decisions from them about diagnoses and treatments. They tend to be more passive about those decisions, and ultimately, have less broad knowledge about the disease itself.

Active patients operate quite differently. Sure, the disease is a large part of their lives, but the crucial difference is that it is a part of their lives, not the sum total. Making that work involves being a lot more active in the decision making process about treatments, and acquiring more knowledge about the disease so that there can be real partnership with treating specialists, rather than an old style doctor-patient relationship where the patient is a passive receiver of treatment.

I’m a naturally curious type, and my instinctive desire to dig into subject matter to understand it from the inside has taken me into the world of academia – as a historian, artist, and musician. I’m driven to go back to the origins of whatever topic I’m working on, and understand it from the bottom up. When I got sick, that same need to know meant that I got stuck into researching the disease, the history of different treatments, and other people’s experience with RA. In the process, I also discovered that there are altogether too many medical professionals who are extremely precious about their own knowledge, who are threatened by knowledgeable patients. While I’m not going go into that in this post, my gut feeling about it is that that’s about ego more than anything else. After all, who the hell am I, a mere patient whose academic discipline is firmly bedded in the Arts, to front up to a doctor who’s spent years training in their field and then both question and challenge what they may offer me?

Running foul of these types of practitioners has made my doctor shopping quite specific. I require doctors, from my general practitioner to my rheumatologist and all the ancillary medicos in between, to be prepared to work WITH me on my treatments, and to give me the benefit of their knowledge of the disease process while taking on my knowledge of the disease as I experience it. Fortunately, I’ve managed to find doctors that meet my requirements over the years, although that’s also meant I’ve had some less than happy experiences with doctors who don’t want to have to deal with someone like me.

Back in the day - pre combination drug therapy - when I was still in the early stages of the disease, at a time before the current trend of treating with multiple DMARDs concurrently, I’d been prescribed Plaquenil and had an adverse reaction to it. I’d then been prescribed Sulfasalazine by itself, and while I didn’t react adversely, it didn’t do anything much for me. My then rheumatologist wanted to move to the next level which, at that time, meant gold injections or Methotrexate. As someone who’s always been leery of taking meds, particularly long term meds that felt, to me, like a massive jump. I grilled my rheumatologist at that point. I’d already had to wean my baby early to start the two DMARDs and move up a level with the NSAIDs, as they were contraindicated while breastfeeding. I’d had to deal with the side effects of Plaquenil, and they were pretty nasty. My blood work was still borderline, the disease activity was relatively mild and slow moving, and he wanted to prescribe drugs with much higher toxicity and likelihood of nasty side effects. Ultimately, he agreed that it was medically difficult to justify that step at that time, and left me with the stronger NSAID and prescription painkillers to deal with the bad days.

While I know the rheumatologist found that frustrating, I didn’t see myself as being a non-compliant patient. What I saw was myself taking an active part in the decision making about what course to take at that point, based on what I was experiencing with the disease at that time. At the same time, a woman who was to become a close friend had been diagnosed with Lupus and Sjogrens Syndrome. Her rheumatologist was a pretty dominant type, while she doesn’t have my tendency to fight when I feel like someone’s taking over, so I watched her get progressively more overwhelmed by the whole process and land on a bunch of drugs with which she struggled, but accepted because ‘the doctor said so’ without any questions about alternatives.

Eventually, it was my choice to move my care to my general practitioner. As long as I was on basic drugs – the NSAID and pain meds – I didn’t see the point in spending the money on specialist fees. My then GP agreed, as subsequent ones did, on the proviso that if anything changed drastically, I’d go back to specialist care. That was fair enough, and that’s how it stayed for some time.

I do remember a fairly priceless conversation I had with that first GP though, that even now makes me chuckle when I think about it. I was getting a lot of muscle spasms that were causing a build up of knots that were particularly painful. Regular physiotherapy helped, to a point, but that was more of a bandaid than an actual fix. Ultimately, it was happening because I was overcompensating for joints that didn’t work properly by using muscles to do things that they weren’t really designed to do, so a highly dysfunctional dialogue had developed between the joints and the muscles that was difficult to manage. I was also experiencing a significant rise in my pain levels.

After some discussion with various people, and some research in the library (it was pre Internet and Dr Google), I went to her and offered up the theory that as Valium was, chemically speaking, a drug that functioned in the body as a muscle relaxant, a low dose of Valium might break the cycle that was happening between my muscles and joints, thereby dropping pain levels and allowing me to also drop the level of analgesia I required. I then sat back to let her chew on it. She thought about it hard enough for me to almost be able to see the cogs whirring in her head, then gave me a long considering look. Then she told me that the theory was sound, but that Valium wasn’t generally prescribed as a long-term medication, due to its addictive properties. However, by then she was well acquainted with my lack of desire to take ANY meds, so asking for one meant there was a serious issue, and she knew that I don’t have addictive tendencies, so she prescribed one bottle of 5mg Valium, with instructions to take it around three nights a week, at most, and see how it went as an experiment… It worked as I’d hoped it might, and it’s been on my meds list ever since. It can take me months to work through a single prescription, as I can go for quite a while before those spasms build to unacceptable levels that need dealing with, so as new doctors have come to know me, they’ve been fine about continuing to prescribe it.

When the disease suddenly switched into overdrive a few years back, my GP – a different one by that stage – who’d been operating on the same basis as the previous one dug her heels in once I went in for a stronger NSAID and a whole new level of analgesia and said she’d give me those, BUT it was time to see a rheumatologist. The one I found was wonderful.

His philosophy is that unless his patients are fully involved in the treatment and active in the relationship, he can’t treat us properly. He has encouraged me to read and learn – particularly since treatment styles have changed significantly between when I was originally diagnosed and when the wheels fell off. Every time he’s put forward a new drug, he’s supplied me with literature to read so I’d understand how it worked. At every appointment, he’s asked me what I’ve been reading, and often I’ve brought him information about new research that he’s not caught up with, or variations on a treatment of which he was unaware at that time.

One of those things, which resulted in a change in the delivery of my current biologic drug, was my discovery that taking it via subcutaneous injection gives a fixed dose with no variation. However, if it’s delivered via intravenous infusion, the dose is calculated by patient weight. That meant if I switched to the infusions, I’d be able to get a dose that was 750mg delivered in a single dose every four weeks, compared to 500mg from the sum four weekly injections. Because it was a drug that he used less frequently, and because he was also not generally in favour of infusions, on the grounds that they are restrictive on patients, that was something he didn’t know. When I pointed out that I’d not had severe side effects from that drug, and that it had worked quite well, but I’d plateaued at a point where he was starting to consider changing the drug altogether, I asked him if I could try the infusion to get the higher dose to see if that would make the difference, before the uncertainties of switching to a whole new drug. As I’d hoped, the larger dose did make a difference – enough to make staying on that drug viable.

Having just done a big interstate move, I’ve yet to meet the rheumatologist I’ve been referred to by my previous doctor. However, my previous rheumatologist got to know me well, and knows I need a doctor who will work with me, and respect the knowledge I have. So far, in a phone conversation with the new doctor, and many consultations with his staff as we’ve organized the transfer of my records, pathology services and the infusions, I’ve found them to be helpful and cooperative, as well as easy to access and prompt in returning calls. It bodes well for the future.

Clearly, I see myself as an active patient – as much as I ever stop to analyse myself as a patient…! Educating myself enables me to take an active part in the management of my disease. It does require that I have doctors that support my role in the process, but at the end of the day, I do believe it means that, overall, my disease is managed better than if I just sit back and allow the doctors full control, and let the disease be something that rules my life.