I thought I’d do a bit of a health update, for those of you who follow that part of my story. It’s been a month since I was diagnosed with Ankylosing Spondylitis.
I wrote a column for the Nelson Mail about inflammatory arthritis and my experience of it so far. I guess the most important things to know are:
- Arthritis is really fricken common. 550,000 Kiwis have some form of it and half of those are under 65.
- Inflammatory arthritis is caused by an event in your immune system – in my case, my illness triggered the HLA-B27 gene and so that’s why I’ve developed AS.
- It mainly manifests in my spine, joints, and GI but the inflammation and pain is widespread and my condition will get worse over time.
So let’s talk about the practicalities of managing this. If you follow me on Twitter you will have seen me talk about how it feels like a fulltime job to manage an illness like this, and that I’m always off to some appointment or another. It’s exhausting in itself. But I feel it is very important to be proactive and to fight this (or learn how to live with, in some cases) from as many angles as possible. I’m going to use every advantage I have. One of the advantages is the range of care available to me.
My GP is really good at working with me, giving me referrals, doing research, and sharing heaps of information. I’m lucky to have him. Yesterday we went over medication and other therapy options. So here’s what I’m tackling at the moment.
This is what breakfast looks like.
I’m currently taking:
- Prednisone, a steroid to suppress my overreactive immune system and help get the inflammatory response down
- Panadol ever four hours
- Naproxen, an anti-inflammatory
- Omeprazole, to help protect my stomach from the shredding of the Naproxen
- Codeine for spinal pain
All pretty basic first responses to an illness like this. If these don’t help get the condition under control, they’ll be looking at next level stuff like TRF inhibitors.
I also take:
- Turmeric, which is wellknown for being a really strong anti-inflammatory
- Fish oil
- A Clinicians Joint Relief formula
And I use Antiflamme and Voltaren gel topically – hot water bottle and wheat bag are also a lifesaver.
– I’ll be seeing my Rheumatologist in a couple weeks to assess next steps. He might prescribe something stronger than Naproxen, depending how I’m responding to that and the Prednisone. We might also be doing an MRI and/or xray to have a look at the inflammation or any bone changes in my spine.
– Next week I’m seeing a physiotherapist at the hospital to get given a range of exercises which will also include swimming and aquaexercise. I am not excited. It sounds painful and I hate swimming. But I’m damned well going to get used to it because it will help keep my mobility up and stop my spine from fusing together.
– I’ve got a referral to see an ophthalmologist, which will hopefully happen asap. The inflammation gets into your eyes with this illness and my vision has started to deteriorate. They need to address this really quickly otherwise my sight could be really badly effected. I should have told them months ago that my eyes were hurting and my vision was blurry, but I didn’t realise it had anything to do with everything else that was going on. I thought I was imagining it/ just not wearing my glasses enough. Stupid stubborn Sarah.
– I have an appointment with my nutritionist to make sure I’m eating the best diet I can – ie, lots of foods that will be ant-inflammatory and give me energy, and none that will aggravate my system and makes things worse. It’s a really delicate balancing act and I find it so tiring, but it’s so important.
– I also see a chiropractor and a massage therapist every week.
So I guess you can see how I’d be left feeling a bit exhausted after all of that. I’ve overwhelmed with information and options, which is a good place to be but also, well, overwhelming. I’m hoping that this is the point where I can learn as much about the illness as possible, get the right tools in place to manage it… and then, maybe, get back to having a life that isn’t just filled with seeing doctors day in and day out.
Anyone want to have a cup of tea?!