Saturday was great. Had my MRI, which hurt to lay on my back for but was fine. Just waiting on the results. I went without my binder, which certainly confused a couple of staff. This was decided to increase my chances of making it out saturday evening.
Well, I made it out. :D
So I joined the guys and we started up a game of D&D. I have a little experience of the game from uni, but that was played with experienced players who could tell me exactly what to do with dice and setting up my character, so all I had to do was role play it. Now, it's the four of us where I'm the only one to have ever played before.
It was brilliant fun. We entered our first dungeon, and almost immediately ended up visiting a dragon. This encounter required a lot of role playing, as we had to negotiate with the dragon to avoid getting into a fight. Alas, we failed and it attacked. Fortunately the two of us with stealthy characters managed to steal its' treasure while it was distracted and convinced it to stop in exchange for its' treasure back.
Afterwards our characters took a short break to heal and decided to try entering the dungeon a different way. This got us into a battle with a couple of enemies which was ok until they called for 2 much stronger reinforcements. We survived, but the two encounters had taken so long that we ran out of time. We'll have to venture further into the dungeon next week. Hopefully I make it, if not I'll have to play over skype.
Monday 24 September 2012
Thursday 20 September 2012
Hmm
Well, I had my appointments. Got my referral back to charing cross sent off. Just waiting to hear from that. It was a slow process the first time so I'm not concerned at the moment.
Rheumatology appointment was a little less successful. He decided he didn't think it was hypermobility but gave me a diagnosis of fibromyalgia instead. I'm not happy with this as it doesn't fit. He assured me that I'd read up on it (he gave me a leaflet) and things would click and i'd relate to it. Claimed it would explain most of my problems "even the gastric ones".
LIES!
Fibromyalgia doesn't explain a thing. IBS is common with it, but my bowel issues were caused by medication and in terms of things, is a recent problem. My stomach problems aren't covered by it. Fibro's main symptom is muscular pain, and tendon pain with it. My pain isn't muscular, it's right in my joints where the leaflet states it won't be.
The main test for fibro is pressing on a variety of areas on the body to check if they are tender, as all fibro patients have this symptom even though nothing is physically wrong. Well he checked several, not one was tender. So how, upon failing the main diagnostic criteria did he end up at this conclusion?
Personally it feels like it's just a label for "we don't know but acknowledge you feel the pain", a label which says don't bother looking for an answer, we sure won't.
The only good outcome was that he's sending me for an MRI on my back to rule out any physical problems there. Frustratingly it's on saturday. While I'm very happy it's come through so quickly, I haven't been to one of my friends' weekly gaming nights for ages and am trying to not do anything to upset my back so that I can go out saturday evening.
Fingers crossed I'll be ok.
Rheumatology appointment was a little less successful. He decided he didn't think it was hypermobility but gave me a diagnosis of fibromyalgia instead. I'm not happy with this as it doesn't fit. He assured me that I'd read up on it (he gave me a leaflet) and things would click and i'd relate to it. Claimed it would explain most of my problems "even the gastric ones".
LIES!
Fibromyalgia doesn't explain a thing. IBS is common with it, but my bowel issues were caused by medication and in terms of things, is a recent problem. My stomach problems aren't covered by it. Fibro's main symptom is muscular pain, and tendon pain with it. My pain isn't muscular, it's right in my joints where the leaflet states it won't be.
The main test for fibro is pressing on a variety of areas on the body to check if they are tender, as all fibro patients have this symptom even though nothing is physically wrong. Well he checked several, not one was tender. So how, upon failing the main diagnostic criteria did he end up at this conclusion?
Personally it feels like it's just a label for "we don't know but acknowledge you feel the pain", a label which says don't bother looking for an answer, we sure won't.
The only good outcome was that he's sending me for an MRI on my back to rule out any physical problems there. Frustratingly it's on saturday. While I'm very happy it's come through so quickly, I haven't been to one of my friends' weekly gaming nights for ages and am trying to not do anything to upset my back so that I can go out saturday evening.
Fingers crossed I'll be ok.
Thursday 6 September 2012
Musings
Today I have the appointment which should get me my referral back to the charing cross gender identity clinic. After which I will hopefully be able to get funding for my mastectomy, which will allow me to have a much better quality of life.
However I'm finding it hard to be enthusiastic as every movement hurts like hell, and I'm not even wearing my binder yet.
It's frustrating that, while still rather sedentary, I'm doing more now than I was up in stoke. I'm upright more of the time, using my core muscles more, yet my back is getting worse and worse. My lower back might be improving, or my upper back is so painful I'm not feeling it as much. My physio has me working my core from the bottom up, so I should see improvement in my lower back first anyway, I just hope it is improving.
It's a week until I have my appointment with the rhuematologist. I'm very nervous about it. I'm really terrified that he's going to tell me that we've got it wrong and hypermobility is the wrong diagnosis, or that it's correct but there's nothing to be done. It's like having all my eggs in one basket, my hopes are pinned on this appointment. On finally having an answer for a life of problems.
I've been watching the paralympics this week, I love it. I just wish channel four was broadcasting it better. We're seeing such a limited selection of events. I'd love to have seen the boccia or the equestrian, the long jump, or even the club throw. We've seen the odd clip of all of them, so there are definitely cameras at every event. Instead we just have day after day of track, swimming, and a court event (basketball, football, tennis. etc). They have four channels of the event but only three sports get represented.
People often say they are inspired by watching the olympics and paralympics to take up a sport and try to get to the olympics themselves. There are several sports I'd love to get into, but I learnt years ago that trans people can't compete at most major sporting events. So I can't find the inspiration to apply that much dedication to a sport.
There are sports however that I enjoy in a non-competative way. I've always loved swimming just for the sensation of being in the water, I hated the focus on speed that was always placed on it. I love badminton, as just a jolly game between friends, rather than as a fast paced competition. I need to get that mastectomy before I can use a public pool again though, and fix my back before I can do racket sports.
I'd love to take up kyaking, or canoeing. I've loved the sensation of gliding over the water from the experiences of it I've had. I really hope that my body gets to the point where I can take it up. There's a local club on the canal which I could look into joining if I could reliably attend.
It's something to aim for. :)
However I'm finding it hard to be enthusiastic as every movement hurts like hell, and I'm not even wearing my binder yet.
It's frustrating that, while still rather sedentary, I'm doing more now than I was up in stoke. I'm upright more of the time, using my core muscles more, yet my back is getting worse and worse. My lower back might be improving, or my upper back is so painful I'm not feeling it as much. My physio has me working my core from the bottom up, so I should see improvement in my lower back first anyway, I just hope it is improving.
It's a week until I have my appointment with the rhuematologist. I'm very nervous about it. I'm really terrified that he's going to tell me that we've got it wrong and hypermobility is the wrong diagnosis, or that it's correct but there's nothing to be done. It's like having all my eggs in one basket, my hopes are pinned on this appointment. On finally having an answer for a life of problems.
I've been watching the paralympics this week, I love it. I just wish channel four was broadcasting it better. We're seeing such a limited selection of events. I'd love to have seen the boccia or the equestrian, the long jump, or even the club throw. We've seen the odd clip of all of them, so there are definitely cameras at every event. Instead we just have day after day of track, swimming, and a court event (basketball, football, tennis. etc). They have four channels of the event but only three sports get represented.
People often say they are inspired by watching the olympics and paralympics to take up a sport and try to get to the olympics themselves. There are several sports I'd love to get into, but I learnt years ago that trans people can't compete at most major sporting events. So I can't find the inspiration to apply that much dedication to a sport.
There are sports however that I enjoy in a non-competative way. I've always loved swimming just for the sensation of being in the water, I hated the focus on speed that was always placed on it. I love badminton, as just a jolly game between friends, rather than as a fast paced competition. I need to get that mastectomy before I can use a public pool again though, and fix my back before I can do racket sports.
I'd love to take up kyaking, or canoeing. I've loved the sensation of gliding over the water from the experiences of it I've had. I really hope that my body gets to the point where I can take it up. There's a local club on the canal which I could look into joining if I could reliably attend.
It's something to aim for. :)
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