Preaching To The #Spoonie Choir
0 comment Wednesday, May 21, 2014 |
This weekend the Wump is off to his dad's and therefore I have recovery time to be outside and just chill, draw, paint, whatever. I have a fair bit I'm trying to shake out of my head over the next month and the best thing to do in that regard is get to work.
Firstly - getting the boring stuff out the way - the rheumatologist got back to me; he said when I last saw him that he wouldn't call me in unless I was "riddled with arthritis". So, guess what? Apparently I'm riddled with arthritis and inflammation markers are raised. I have honestly tried to refrain from consulting "Dr Google" as I don't really want that colouring the issue right now, but I can't help but think it would explain why there are days when all I can do is cup one hand in the other and try not to move them at all. My hands and joints have become atrocious over the past year, and now my joints can swell and become painful even when the weather hasn't changed a jot. Still, whatever it is, I cannot get back into the rheumy office until June as there's such a backup of patients due to various holidays and breaks and half-terms, so it's a quick trip to my GP to see about getting a 'scrip for anti-inflammatories. What steps happen after that, I honestly can't say and while I hate having to try and look around the elephant in the room, there's no chance of pushing anyone to spit out their concerns till my appointment.
The past glorious week however has been greatly disturbed by pain issues which even co-codamol is refusing to touch (mostly I think it's due to my joints being inflamed). I've stopped wearing rings, which sucks as I loved my jewellery and adornments but I'm now rather boring. Brushing my hair is becoming an ordeal as I struggle to hold the brush-handle. I have to admit that during the winter it was worse so I am very grateful for the turn of the seasons right now, but even so, I'm well aware I have to add a whole new way of managing pain after years of just ignoring it as "just pain".
I've also had some weird stuff going on with other fibro sufferers; I've never experienced this before, but I'm actually getting the residual mutterings of jealousy. I get what it is and why it's there, I really do - fibro is such a nebulous ailment (and there are still quite a few doctors who don't think it really exists and you just need CBT sessions) the treatment is not very forthcoming, if at all. Mostly you're just thrown some analgesics and told to cope. To have something tangible like arthritis suddenly validates one as a patient - I noticed the difference when the EKG actually showed a problem as opposed to being in hospital for surgery and having inflammation reactions that no one would bother to test. Managing to get doctors willing to look beyond the initial "just fibro" diagnosis wasn't easy, and I had to change three different GPs in the space of a year just to get the tests done.
There may actually be treatment now for me rather than a shrug and a distant look. And yes, I can see how unfair that is. It angers me it should be this way and believe me I have said several times now that it makes things much easier all round if symptoms are not dismissed as "just pain". There are so many symptoms which are indications of underlying problems, you have to be willing to be labelled a "problem patient" to get a GP willing to look a little deeper, and a specialist willing to get to the bottom of things as well. And I can heartily assure anyone in that position that it won't happen if you spend the majority of your time bemoaning your fate. Get angry. Drag yourself into a new GP, and then another. Fight for your health, your right to treatment, your life, because no one else is going to do it for you.
Just do what you have to do - if you fall over and pass out, vomit or fall on the GP's floor in a seizure, then it becomes pretty damn hard to argue that you're "just not coping". Again, that is something you have to be willing to do in order to get the end result you want, and no, it isn't fun. I've just gone through a year of it. I know people who have gone through years more.
Fight for what you need...the more who do, the easier it will be for others behind you to also get what they need; it's why I'm doing it. I don't want anyone else to have to go through all this shit.