I say 'living' as that is what we are all trying to do and yet the very people who are supposed to be helping us achieve that make it very difficult at times. This is the end of a very frustrating week for me as I had a hospital appointment with the practitioner nurse that I have seen every six weeks since the end of May. In May she agreed that methotrexate wasn't doing anything to prevent damage to my joints and that anti-tnf would be the way to go. She went off to ask my consultant, a man I have seen once in almost three years if she could put me forward for it and in 8 minutes he decided I wasn't suitable and I should persevere with methotrexate and have stronger pain killers.
I'm pretty fed up about this as...
1) He didn't examine me, in fact he has never examined me! I saw him for the one and only time last May when he prescribed the methotrexate.
2) When I asked the nurse what he had used to make this decision she replied 'your x-rays' to which I replied 'x-rays? The one's I had on referral in the Autumn of 2009?' At which point she sent me for some more X-rays...
I was also prescribed a steroid injection at this point as I was in the middle of a major flare and in sooo much pain, taking 1600 mg Brufen daily with codeine and paracetamol.
I rang the 'helpline' and left a message asking how I go about changing to another consultant and no-one called me back. I rang again 4 days later as I was about to see my fantastic GP and wanted to go through what had happened at the hospital with her and discuss the fact that amazing as my consultant is reputed to be I saw no point in being under him if he's always too busy too see me! I had a call back twenty minutes later saying that as my consultant was leaving that wasn't an issue and that I had in fact seen him three times....this is incorrect and yet this is what my records held by the hospital shows!
The nurse I was speaking to then asked if I wanted to put in a complaint (I never mentioned that) and that it was standard to see a consultant once a year. *I* know that I have only met the man once and was subsequently proved right as one of the occasions recorded *he* was off sick!
At this point my GP put in another complaint and described my treatment by the hospital as crap!
Six weeks later I was still in pain but the swelling had gone down a little and it was suggested *again* that I may be depressed - I'm not! I'm fed up with being fobbed off, lied to and passed back and forth between GP and 'the experts' I also have absolutely no trouble sleeping, I'm lucky, I know.
Six weeks later, two days ago I went again and was told that I didn't have the required number of swollen joints and when I pointed out the ones that are so swollen and give me the most trouble I was told that they don't count and are not part of the test.
I have PsA and all of my joints have been affected at some point (sometimes even my eyeballs ache!) but my hands and feet are the worst. I have a great job which means that I pick and choose what I do. Until the dreaded Arthur visited me in a dramatic fashion for the first time a few years ago I made top end soft furnishings for interior designers and expensive shops. I loved my job but when it became obvious I would no longer be able to do it I changed and now teach people how to make stuff. I had a book published last year which is on sale all over the world and a fantastic boyfriend after being on my own with my son for 13 years. He has RA and is amazing! He never moans about it...I have no reason to be depressed apart from the fact that NICE guidelines and a PCT who has recently tightened up the rules are preventing me from enjoying life.
Told you it was long, apologies!