When I come out of a medical appointment be it with my asthma nurse, or one of my physios, or my rheumy I usually have an idea of the short term goal. Usually it is to try a new inhaler or try some different exercises or go for ore tests, and on the whole I am pretty happy with the outcome of my appointments at first.
But after a day or two I’m usually still thinking about my appointment. And it’s by then that I realise that I still don’t know what the next step it. With my rheumatology appointment, for example, I go in she asks me how I’ve been, asks what is sore, may or may not to a physical exam, sends me some bloods and then I’m on my way. Then a couple of months later I would get a 2 line letter saying the bloods are the same as usual I’m sending you for another scan. But what is the next step?
To give you a little summary of my joint issues… I started getting sore joints 6 years ago, went to my GP who referred me for physio, after numerous rounds of physio with 2 different physiotherapists I was sent to the rheumatologist. I didn’t have swelling in any of my joints just pain. Then a few months ago my hips flared and they have been bothering me ever since. If I am standing up too long my hips get pink and hot and sore. A month or so later my ankle was bothering me, but this time only with swelling and pain. There was no pink/red colour to my skin and no heat. Last week my knees flared too… They both got hot and pink and sore and puffy.
So I’ve now been started on a quite strong NSAID called indometacin which has helped a fair bit with my morning stiffness but my joints are still getting more and more puffy as the day goes on, my joints are still sore. So now I wait till my next rheumy appointment. They are supposed to be every six months, I waited 11 months last year to find out the my next step was just taking me in a big circle again… More tests, more scans, more physio, no answers. So what is the next step? I’ve had people asking me if I am taking immunosuppressants or steroids for my joints but I’m not. I have no official diagnosis. I have no idea if my next step is to try a medication called methotrexate which is often used in arthritis if it isn’t controlled by NSAIDs alone… but in all honesty I’m not entirely sure I have arthritis, all I know is that “my symptoms sound like arthritis”.
The same goes for my asthma clinic appointments although they are a lot more productive. I have realised that my steroid inhaler has not been increased since my diagnosis despite an increase in the severity and frequency of my symptoms. Yes, I do increase my dose when I have a cold, but by then I feel terrible. I don’t come out of the appointment thinking that I know what my plan is for the next 6 months, and I know that is partly due to my asthma being, to a certain extent, uncontrolled. But I would like to know what my asthma nurses aims are. Does she want to get my peak flow back to 400? Because at the moment all I am being offered is oral steroids, which I don’t really want to take unless I have to. So what is the next step with this.
Every appointment I go to I have a little list either written down or in my head of things if like to know by the end of my appointment. But not many of the things on my list are answered very often. And yes I’ll admit sometimes I don’t push enough for the answers or I will get side tracked my something that has happened during the appointment. But what my aim is for my next appointment is to know what the next step is, be it a dose increase, a medication change, a new approach to thinking about something, a new doctor… Anything.