30 years

In 2013 my daughter turned two, which is the age I was when I was diagnosed with juvenile rheumatoid arthritis. Despite the reassurance that it is very unlikely that she will experience the same fate, I was stressed that year. Anytime she had a funny walk or did not want to walk my stomach went a little cold. She's six and remains perfectly healthy. Here are some cute photos of her at age two:

When I was 2, in 1987. My parents and I were down in Melbourne (we lived in Darwin at the time), showing off my baby brother, to family. One day, or so the story goes. I stopped walking. No crying. I just stopped walking. Somehow, during that trip they managed to diagnose me with JRA. It started off in my knees and spread to every single joint. 

I don't remember any of this, because I was two. I've spent my entire life with RA, I don't know any other way of living. 

Since 2003/4 I've been lucky enough to be on Enbrel, a biologic (a TNF inhibitor). Unfortunately in 2014 Enbrel stopped working for me, so I trialled Humira, Cimzia, Actemra and eventually landed on Xeljanz. Which worked well. Until the doctors noted that it was messing with my liver function. 

side note: Doctors assume that patients are able to read between the lines or fully understand brief warnings of tails of failure tucked into instructions and paperwork provided in a 15 minute check up. 

They saw my liver scores getting out of control and did nothing. Until it was too late. 

By the time they suggested that I stop (halve) Xeljanz, it was too late. 

I halved it and felt so much better for it that I stopped it. I figured my liver would recover faster that way. I didn't realise that my liver function excluded me from other biologics. 

Since July my RA, for the first time since 2003 has been untreated. 

Then I got the flu, and the flu just would not go away.

What I didn't recognise is that the flu did get better and what I was experiencing was untreated flaring - entire body on fire - rheumatoid arthritis.
The thing that blew me away during this process was the apathy. My entire world came crashing to a halt and I had to beg for appointments, where I was offered nothing but bad options.

I ended up admitted to hospital for just under a week at the beginning of October, begging for relief.
They tried a plan, a bad plan that I protested to, and then left me for three days with no access to a doctor who could start a good plan. So I discharged myself and started my own plan.

Part one of our plan: I started back on Enbrel (this was my husbands suggestion, an engineer, who read the government application documents for biologics, to try and find one I could start, when all the doctors were willing to offer were Xeljanz or oral steroids, two terrible ideas).
Part two: five direct into the joint injections of steroids. The doctor that admitted me refused to do this due to 'the risk of infection.' I had the fifth injection today. They've worked so well.

I'm starting to feel like myself again, less like my limbs are on fire.

But my faith in my medical team has taken a big hit. If I didn't have all the years of experience dealing with RA I don't know where I would be today. Certainly not at the tail end of my awesome, if not extremely painful and time consuming (You can only get one joint injected a day, I've been to daily appointments at a clinic in Toowong, Xradiology, 10/10 would recommend) treatment plan.
My GP wrote me up for the joint injections (he gave me this fifth form of Monday) and asked me what the specialist had to say about maximum number of joint injections:
me: (laughing) "I have no idea, I didn't ask their permission, this is my plan, not theirs."