I can't shake off the cross and gloomy feelings that started after I saw the rheumy nurse yesterday morning, so I thought I'd come and let off some steam here...
I showed the nurse the rash that's spreading across my lower back, driving me crazy. "Oh, that's the Hydroxychloroquine", she said, "It often makes psoriasis worse. Just stop taking it". So why didn't they take me off it when I was diagnosed with PsA 6 weeks ago?!
I told her I'm worried about my feet, which still hurt a lot, although the swelling and pain in most of the rest of my body is much better since starting MTX. "There's probably already damage. Only surgery will help", she said. Oh great. Bl@&dy GREAT. (And yes, that IS sarcasm).
The last time I saw the rheumatologist himself, and he finally diagnosed PsA, he said "I haven't been happy since you told me you'd had a hip replacement so young. But now we know it's psoriatic arthritis, that explains everything!" I wasn't as happy about it as he was, funnily enough.
I have spent 4-5 years knowing there was something wrong with me, and trying to get doctors to take me seriously. I have suspected PsA since earthwitch and postle suggested it here last year... I have had to fight every step of the way, it feels like, and use all my assertion skills to push for tests that eventually 'proved' I was right. From not listening, to being off-hand about symptoms and the damage that's been done to me, they seem pretty dismissive. I realise they see 'people like us' every day and the novelty must've worn off, but I would like some acknowledgement that for me, and for each one of us who's diagnosed, this is a BIG DEAL and often quite difficult and shocking.
I'd just like one of them, one day, to say something like "This is a big change for you" or even "I'm sorry you weren't diagnosed sooner". I guess that's too much to hope for...