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!