Arth-fricking-ritis

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It's no secret that I have arthritis, although some people may just not know. It's of the psoriatic kind, which means I have arthritis and psoriasis on my scalp and pustule psoriasis on my footsies. It's a bundle of joy. I'm on medication that for the most part has kept it in check, until now.

It all started back in 2009 when I was experiencing hip and back pain for no apparent reason. I also had this weird pustuls/flacky patch on my foot that I didn't know was connected to the pain (but I mean, who would make that connection?!) so I just left it, thinking it would clear up. I had no idea what was going on with my back, but I needed to fix it. So I went to an Osteopath. He had no idea what was going on. We had several treatments before he suggested an x-ray and what came to light was that I had arthritis in my lower back and sacroilliac joint. This is what was causing the crazy referred pain in my hips and lower back.

I kept doing treatment with this Osteo because I didn't know what else to do. He didn't suggest that I see a Rheumatologist (WHY OH WHY DID YOU NOT SUGGEST I SEE A RHEUMATOLOGIST), he didn't suggest any readings. He just kept on working on the referred pain. He did suggest dry needling with his colleague, which unfortunately was one of the most intrusive and painful experiences of my life (but of course when done correctly isn't meant to be painful)... Was I destined to see only amateur 'professionals'? This was the straw that broke the camels back. I gave up. I was heading over to The States and Canada for some touring so I had no time to pussy foot around and/or waste my money on treatments that obviously weren't working for me.

The nature of my arthritic beast is that it ebbs and flows. I'm not always in pain, but when I have a flair up, I get killer referred pain which at times can be debilitating. So I could go days or weeks with no issue or thought of it, but then with a flair up not be able to move without being in pain. 

The next five years were like this. Cruising on through, then dealing with debilitating pain, popping painkillers while smashing 8 hour shifts as a barista, seeing a lady who wasn't qualified in anything in particular but called herself a 'healer' who tried a myriad of different things for my pain, all to no avail. 

It wasn't till 2014 that I actually saw someone. I saw a Rheumatologist. Who works with people with Arthritis. You know what I'm talking about. A professional. Of the Arthritic kind. Crazy hey? 

I was optimistic and excited to get it under control but the Rheumo I saw was lack lustre. He didn't give two hoots about me. I mean, just bloody pretend or something. He didn't suggest any other treatment apart from Methotrexate, which is a medication that is used commonly with folk with arthritis. It can reduce inflammation and slow the progress of the disease but it also compromises your overactive immune system, so comes packaged with some pretty crappy side effects. Not everyone gets all of them of course, but one of the side affects is that the medication can cause birth defect if you fall pregnant while on it. During the lengthy discussions about my health and treatment, my partner suggested that if we wanted to have a kid, why don't we do it now and then we can focus on getting my hips better once the kid was born and I was no longer breastfeeding. So I opted out of the medicine and we went and got all pregnant. 

During pregnancy, I had a really hard time. The flair ups were consistent and I was often in debilitating pain. The physician at the hospital put me on a low dosage of steroids that were an incredible help towards the end of the pregnancy and he referred me to see a new Rheumo after the kid was born. HELLE-FUCKING-LUJAH! A physician who knew what they were talking about and knew where to find a bloody good Rheumatologist. With hope and anticipation for what may come, we started our appointments. Firstly we tried steroid injections right where there arthritis is in my sacroiliac. This is a treatment that can be quite successful for some people. Unfortunately not for me. But at least we were trying something. She talked about many different forms of treatment and what would be best for me. Her suggestion was Humira which is a biologic. It was a new medicine and very expensive per dosage, so there was a three month period of red tape and failing anti-inflammatory courses (which of course was easy for my flailed up as fuck hips).  

So began my love affair with Humira. Oh my lord. It took a while to fully kick in (and I was practicing other health care like eating really well, trying to keep active and loosing a bit of weight) but when it did, its like I didn't even know myself. I was, for the first time in ages, able to be physical and I had a skip in my step that I hadn't felt in a long time. 

As the time passed, it came to light that the Humira was ticking a lot of boxes, but not all of them. My arthritis was for the most part in check with only occasional flair ups, but my psoriasis/pustule psoriasis was still unchanged. At my next rheumo appointment I mentioned this and luckily for me, a new medicine had just hit the market that was specifically for psoriatic arthritis - Cosentyx. So I was like, why the hell not! I'm willing to try anything, lets give it a go!

Again it took a while to kick in and then it worked well for a good 9 months, but recently flair ups and referred pain are starting to creep back into the mix. It's not always, but it is more often than before. It's never going to be the same for everyone on these medications, every body reacts differently, and unfortunately this is just how my body responded. I talked to my Rheumo over the phone who suggested I take anti-inflamitories when it is really bad, so I do. 

It is unclear for me where the medication begins and where it ends. I definitely know that I feel much better than I did before I started medicating the arthritis. So theres the big PRO. But now the flair ups are coming back with more regularity, I just don't know where I stand with it anymore. It's so easy to get down and all 'I can't believing that I am to be a sufferer of the Arthritis for the rest of my days'. For quite a few years I have let this arthritis determine who I am, how I move, what I do; I have let the arthritis own me. It's hard not to when it gets really bad. Then I remember just how  bad it was before the medication came into the mix and I just have to be thankful that I have the opportunity to try different treatments. So while the genius scientists are working away at discovering new ways of dealing with this shitty disease, I try to find different ways in which I can manage it on my own, hand in hand with the medication. 

I try to cut inflammatory foods as much as I can, although when life happens it's so hard to stick to any kind of dietary restrictions. I am more active; I walk more, I try and do 10 min HITT strength sessions when I'm not all flared up, and I stretch when I remember. I am seeing my new kick ass Osteotherapist to deal with the referred pain,  and I continue to see my amazing therapist who I'm working with to start to shift my attitude towards my arthritis and my hips. Currently when I get a flair up, my life completely crumbles and I get really down because I can't 'do' anything. Accepting that this arthritis is with me forever and always (as there is no 'cure' only 'management' medications) is tough but getting easier. I can complete the tasks I need to complete (albeit a bit slower) when I do have a flair up, and I need to remember to not to be so hard on myself when I'm felling physically bad, and just do what I can. It's tough in these moments, but I am trying to focus on the positives. 

Long story short, or short story long- I am not a sufferer of arthritis, I am a kick ass mum/partner/creative/teacher/support worker/musician/friend/writer/daughter/sister that happens to have arthritis.