I must start with an apology for being the World’s Worst Blogger. I’ve really not been on it with the frequency of late, but I think I’ve got a fairly good excuse – the last few weeks have been nothing but JIA-related stress.
A few posts ago, I was having a tough old time on steroids; a tough old time that I actually needn’t have been having at all. Through an administrative error, I was instructed to take twice as much Prednisolone as I should have been – never one to ignore medical advice, I did this for three and a half weeks. It meant I was taking 40mg a day, rather than 20mg. Not exactly life threatening, but not ideal either, considering I’d spent this whole time crying and eating all the time. Plus, my face was really round which is what I was the most angry about. As ever I’ve got my priorities sorted, thank you very much.
I realised that I’d been given the wrong prescription, and called the doctors surgery myself to point it out to them. After several confusing phone calls – one of which involved someone calling me tell me I couldn’t have any more medicine, quite literally the last thing I wanted – they finally realised the seriousness of the situation and called me into an appointment to go over what exactly had gone wrong and to apologise to me. Apparently no one knows how 20mg divided by five came to eight tablets. I guess we never will.
A few weeks later, I was struggling to get in contact with anyone about my sulfasalazine. I found out my liver function was up and was told to stop sulfasalazine and to go for a blood test and await further instructions; further instructions which never came. I’ve since spoken to my GP but have been unable to get in contact with anyone to find out what I should be doing with my medicine, and it’s making me a bit nostalgic for the NHS care and attention I used to get.
When I was about to transfer from paediatrics to adult clinics, I was warned that it would be different, but I didn’t think it would be quite as stressful as this. I often feel like no one really cares enough about me to make a decision on my health without passing me onto someone else. There is a rheumatology advice line for me to call about situations such as these, except as an answer machine service it is hugely over-subscribed. I also work full time, and if I don’t answer my phone when they call me back, they don’t leave a message and they won’t call my mum and tell her despite me giving my permission for them to do this. Instead, they write me a letter. Seriously, I have received letters three days after my phone call to ask for help which have the heading “Urgent” on them. If it’s urgent, why don’t you leave me a message?
I have a lot of questions to ask about everything. I am the Question Queen. I especially have a lot of questions to ask about my arthritis because I’m still relatively new at handling all this myself. I’m getting to grips with living as an adult with JIA, but the last thing I want is to feel like my doctors are still getting to grips with it as well – I want them to know how to help me; I want them to tell me what to do and why I should do it; I want them to realise they’ve made a mistake, or not make it in the first place, rather than leave me to crack on and have to call them and tell them that I’ve been overdosing.
I think the problem is that paediatric rheumatology gives you unrealistic expectations of the NHS, so when you go into adult care and no one knows what to do with you, you probably take it a lot more to heart than you would if you had never experienced the good old days. It’s like how a good boyfriend ruins you for other men; my paediatric rheumatologists have ruined me for other medical professionals. My health is pretty much the only part of my life where I will do as I’m told. I’d just like someone to actually tell me what to do.