Saturday 24 September 2016

#RABlog Week 2016: Post No.1


So, here we are again...#RABlogWeek. Once again, I will be following daily prompts and posting each day for the rest of this week on topics pertaining to RA. I'll include the link so that, if anyone wants to follow up, will take readers to where posts from other bloggers can be found. Don't forget, we bloggers LOVE to get feedback, so please do comment if you feel so moved.

The prompt for today is:
Starting Stories: tell us about your diagnosis, what you were thinking, or feeling or when did you first know something was wrong. Or maybe you were having a break from a biologic medication and you decided to give it another try.

I wrote my 'starting story' last year, largely in response to the many women with children who have Rheumatoid Arthritis (RA), and the things they were saying online about not feeling as if they were the mothers they wanted to be since getting sick. So it's coloured by a parenting context, but includes the story of my original diagnosis, so I won't rewrite that this time. You can read that post HERE. What I'll do instead is have a more detailed look at what happened around four years ago.

As I wrote in the aforementioned post in May last year, I was originally diagnosed twenty four years ago, and for the most part, albeit with ups and downs, gradual deterioration and intermittent flares, experienced mild disease that was mostly managed with GP care, pain meds and NSAIDs (anti-inflammatory drugs). However, the one thing that can be almost unfailingly predictable about RA is that it is entirely UNPREDICTABLE. My disease is no longer mild, it's highly aggressive, and only just controlled by a raft of the biggest drugs I've ever had to take - and that has all happened fairly recently, and has changed just about everything in my life.

Four years ago, I was well into the second year of my employment as a marketing coordinator for a big, busy Sydney CBD Anglican Church. The job was varied, busy, and had regular pressure points and deadlines, which included the publication of a large monthy magazine. The hours could get quite long, and it could all get very stressful. I've always worked well under pressure, but it does take me down if it gets too much, or if it doesn't let up. So, when I found myself feeling increasingly exhausted I put it down to work stress. I made sure I was getting regular exercise to compensate for being at a desk all day, and to help me sleep, but that, too, was becoming difficult.

My regular morning walk was starting to be a real challenge, with increasing pain and stiffness. Then joints in my legs started to jam at work if I was at my desk for too long. I remember one day, moving to stand up, feeling my knee jam, but not really registering it in time to stop pushing myself up from the chair - and then it cracked. And the pain... Absolutely sickening, just awful. I was fighting to not throw up. The residual pain from that was bad enough that I didn't do my walk the next morning, and that was the beginning of a steady attrition of my exercise program.

We moved house twice in the next six months - more stress - and each time, I was able to help less and less, and got exhausted faster. Then I caught a cold. I landed a chest infection very quickly, and it got frighteningly close to pneumonia. I was two weeks away from work.

I never really came good after that. I was often in significant pain. Bought stronger over the counter pain meds, and eventually landed, on a walking stick, in my GP's surgery to ask for stronger pain meds and a stronger NSAID. She wrote the prescriptions, and then announced that it was time for a rheumatologist, because clearly something had changed. She gave me a list to call to see who I could get into fastest, and I was incredibly lucky to get a cancellation with a doctor who could see me straight away.

He started me on prednisone immediately to try and drop the inflammation levels, while he organised a pile of blood tests and got acquainted with my back story. Once again, although the disease had clearly kicked into overdrive, there was no positive rheumatoid factor. He started me on two DMARDs - Sulfasalazine and Arava - but the disease was spiralling out of control, and despite those, huge doses of Tramadol slow release (painkillers) and 50mg daily oral prednisone, I deteriorated to the point of needing a walking stick all the time, and struggling to manage a full day at work.

Then came the start of Methotrexate (MTX). That was a complete disaster. I had a terrifying reaction to it - more for those around me than for me...it knocked me out. I'd have a few hours after taking it of being able to function, and then I'd HAVE to lie down. And then I was pretty much out of it for the rest of the day and that night, and I have very few real memories of the five weeks that followed. that was the end of being able to manage at work, so I was sent home on extended sick leave. I continued to try and work from home, but until I stopped taking the MTX, my cognitive abilities were seriously compromised.

Eventually, I was admitted to hospital, and was there for two weeks while comprehensive tests of everything that COULD be tested were done, and then I was given a 500mg dose of IV prednisone. THAT was a miracle. Within 24 hours, I was able to walk again - painfully, but I could do it. My liver enzymes had spiked so I had to stop the DMARDs, and had to wait before I restarted them. The Prednisone burst lasted me a few months, and I started to deteriorate again, and had a booster late that year - to keep me going while we waited out the period of time on DMARDs that had to happen before I could potentially qualify for biologic drugs.

We got there eventually, and I did qualify - after more blood tests and an MRI that established unequivocally that it WAS definitely RA, and it was active, AND there'd been damage to joints.

There is a prompt later in the week about biologic drugs, so I'll write about that in more detail in another post. However, I'm on my third one now, and it's working reasonably well. I'm not 'well' per se. It's a continual balancing act. But remembering that awful period of sudden and severe deterioration over a very short period of time reminds me of how much better I am now by comparison.

It's been an enormously confronting few years, and has continued to deliver big challenges. I eventually lost my job, as I'd been maintaining the magazine and other parts of the job as well remotely, but a warm body in the office was required, and I wasn't able to predict exactly when I'd be able to do that again, so someone else was brought in. That's been very hard. I've tried to build up my freelance work, with mixed success - freelancing being notoriously unpredictable. I live with a level of 'normal' pain now that I have to consciously shove out of the way in order to think about other things. All my activities are carefully considered, and have to be balanced against how I am on any given day.

But, life goes on, and among other things, active disease has brought me into a diverse community of other people with RA which has meant new friends and connections, so it's not all been terrible. Sick or not, I'm still me in here, I still have dreams and aspirations. How I got about filling them may need to be considered differently, but it doesn't mean they're not there, and that I'm giving up on them. I'm stubborn like that! The side effects from the drugs have been hard to deal with too. I struggle with weight gain and hair loss...somehow I need to figure out a way to reverse those two... I'm acquiring a big collection of very funky FLAT shoes, because I won't wear heels again...but that, in itself, is fun. Shoes are shoes, after all, and there are some pretty cool flats available!

15 comments:

  1. Stubborn is good. We have to be with RA. On really bad days, I have a good cry, feel sorry for myself, and then that stubborn streak makes its way back and I am making life happen again. You've had a rough road but I love your attitude going forward.

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    1. Hey Cathy - thanks for dropping by!
      My first rheumatologist diagnosed me with a secondary condition - chronic stubborn pig-headedness...! I have to say, it's been quite useful when the chips have been down.
      Keep on making life happen - we're a long time dead, after all!

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    2. snort! You actually got an official diagnosis with that? That's hysterical. And very, very useful with RA.

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    3. Yep!!! He had a sense of humour, that rheumatologist had a sense of humour!

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  2. Love the comment about your funky flat shoes. I can so relate, as I can only wear Brooks tennis shoes. I try to find, as you describe, "funky" or rad colors. We must never give up on our dreams. Looks like you have not.

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    1. Hi Brenda, thanks for commenting!
      My sneakers - Palladium brand, which I can recommend - are red! And I have four pairs of Doc Marten boots, all different colours. But I've found a couple of shoe designers who concentrate on comfort as well as style, and have lots of brogues (LOVE brogues) and other cool shoes.
      We have a choice - we can live WITH the disease, or allow it to consume everything. And, frankly, there's only one viable option out of those two, as far as I'm concerned!

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  3. Kaz, I love the chronic stubborn pig-headedness. It reminds me of my cousin. LOL No she does not have RA, that is just the way she is, I am going to give her this DX (I am a doctor after all, just not that kind).

    It is so difficult to work with RA. I know I was able to give it a go for several years but when it was over it was over. I think you might have felt a bit like I did when I was no longer able to work. For me it was awful. I so wanted to keep working and still do, maybe someday.but shh do not tell Sheryl i said that.

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    1. The work thing is a difficult one, Rick. I certainly wasn't wedded to that last job, per se...it was a job of expediency, although, the monthly mag was most satisfying to put together. But the isolation of NOT working is a tough one. Freelancing is a lonely business. The move to Melbourne will help that, as I have more people on the ground here, and already, have had folk calling and dropping in through the week while Dragon Dad's at work, so that's making a big difference. And as we get settled properly, I'll look for a place for studio access and get my ceramic work going again, and some drawing, which apart from the art work will also mean new people (and income, if I can find a gallery to take the work as well!). I'm not lacking for things to actually DO...and most of them are more satisfying than most of the jobs I used to have - it's more the social aspect of working.

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  4. Kaz, it's a pleasure to meet you via #RABlog Week! You're the second Aussie RA blogger I've met. Do you know Sam w My Medical Musings? She and I have really connected this past year. I'm an "almost Aussie" as I lived in Sydney until I was nine. I still have close friends there.

    Anyway, I can relate to the job thing. I was laid off from my marketing management job a few months before I was diagnosed with RA for the same reason you were. I am also freelancing now. I am fortunate to be married, or it would be tough to make ends meet. Even though my RA is not severe, I too struggle with my energy level. It just isn't the same as it was before RA. That said, I manage OK. God is my strength!

    Looking forward to getting to know you!

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    1. Hi Linda! I've read Sam's posts, but we don't know each other, no. I can recommend Arthritic Chick though - she's another Aussie blogger with a really great blog that's much more RA focused than mine. As I said somewhere - might have been my preliminary post before this one to preface #RABlog Week where I said that my blog is more general, but I do participate in this event, and I do write about RA when it's pertinent to the topic I'm writing about.
      Likewise, I am very fortunate to be partnered, and Dragon Dad is very supportive of my writing and art, so I"m not lacking for things to do - just struggle to make them pay WELL! Far too many people out there working for peanuts and that makes it harder for the rest of us to charge appropriately and have that taken seriously and with respect.

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  6. Great blog, and illustrates just how quickly RA can change. All disease is bad disease, even mild RA has a huge impact on quality of life. But mild RA can become severe RA in a heartbeat, and truly tear your life apart. I'm glad you had a great rheumatologist and your inherent stubborness and fighting spirit to get you through. Keep on keeping on in your funky flat shoes!

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    1. Ah, see, my funky shoes are my secret weapon. My feet my hurt like hell, but they LOOK fantastic!!!!
      Yes, things can change very suddenly. And that's scary. We should never get complacent about our disease, that's for sure. And we should never judge others by the level of disease we have, cos it can all change.

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  7. It sounded like your GP tried to do his best but I wonder if an early aggressive treatment would have prevented the fatigue and unbereable pain. I can totally relate to your story being young with an unpredictable future ahead of us when living with RA

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    1. Thanks for your comment Cristina. Back when I was first diagnosed, the treatment style was very different. Rheumatologists were cautious about prescribing, and DMARDs happened one at a time, as opposed to the combination therapy that is used today. As it was, my disease WAS mild, and I went into a spontaneous remission for a long time. Also, the whole sero-negative form of RA was not understood to be 'real' RA, so there was even less inclination to treat it aggressively.
      When everything changed - and I'd LOVE to know what happened to turn my disease from mild to severe with no warning - my then GP did act very quickly, as did the rheumatologist I ended up with, who hit me fast with combination therapy. Perhaps if I could have accessed bios faster than I did, that may have made a difference, but that wasn't an option with the medical system here, so we'll never know. I have no complaints at all about how my disease has been managed - by both rheumatologists and GPs over the years.

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