I didn’t want to waffle on too much about myself again, but since we made some progress at the GPs yesterday I thought I should give an update. The GP wasn’t surprised about the way I’d been treated at the local hospital and even admitted that he had seen some horrendous treatment there himself. He fully supported my decision to discharge myself and said we needed a plan that would help me to feel better without going back.
First off, he would arrange for an outpatient CT Scan just to make sure I have no blood clot, although he agreed with me that my symptoms were more flare related. As for the anaemia, he feels certain that it is Anaemia of Chronic Disease and that we can afford just to keep an eye on it for now. If my haemoglobin does drop any lower than it’s current 8.0, I am to mention to it to my rheumatologist and get the transfusion with him.
Finally, since the main thing that is bothering me right now is pain, we discussed my painkillers. I currently take Tramadol and have refused anything stronger in the past because I worry about masking my symptoms too much and also about becoming reliant on/resistant to pain medication. I don’t even take the full dose that I am allowed, even with the amount of pain I’ve got at the moment. Anyway, my GP made me agree to take the full dose every day this week to see if it did take the edge off and, if not, said he would prescribe something stronger when I see him in a week’s time. He also prescribed Naproxen, which is something I took way back in the early days of my diagnoses and never bothered with since; but I’m willing to give anything a go right now, even if just for a little more relief and mobility.
So there we are, it felt like progress to me and I at least have an appointment with him again next week (without having to phone days in a row). It should be enough to tide me over until my next infusion on the 25th August, when I will see my rheumy again – he’s currently on holiday. I’ve put my Prednisolone up again, which takes me back to the worries I had previously, but I need relief.
My next ‘worry’ is that we are going to Oxford for the weekend later today, as our friends are getting married tomorrow. It seems crazy in a way to even contemplate it, but I guess it’s just one of those things you have to try and get through as best you can; plus, I’m really looking forward to it! I’ve never been to Oxford before, so that in itself will be nice. The Ceremony is quite early in the morning and then they are having a campsite barbeque reception – which will be a new experience too! Hopefully, I’ll be able to fit in some rests back at the hotel and will just have to pace myself the rest of the time, but at least I know I will be looked after.
Of course I wish I didn’t have all this to worry about, but you have to make the most of what you’ve got and, besides, I hate having to put my life on hold. So, here’s to the happy couple – and to enjoying our lives despite this horrible illness, just doing so at our own pace.