Tuesday, 30 September 2008
Visited the GP this morn to get more drugs. I should have reduced my pred dose to 5mgs a day by now (and therefore have some left) but all is not well in the world of the bowel. Not awful (I have yet to completely refuse to fart), but not good, not right, and most importantly not solid. So, I waited for an appt with my usual GP to avoid the complex issue of persuading a less familiar doc that I am capable of deciding for myself when I need more steroids, rather than speaking to a consultant first. Fortunately the doc agreed and gave me a prescription for enough preds to last until the beginning of Nov, when I have another appt with the rheumotologist, at the current 5/10mg dose. Although after the most recent visit to the bathroom I may just have to up that to 10 mg a day. Mmmm, I'll give it a few more days.
What was new, though, was an extra concoction of drugs. My GP was concerned that I had been on the preds for a while (about 4 months, though pretty low doses), citing worry about weakening my bones, particularly as he seemed pretty intent that I was a 'fit young chap'. Does 35 still count as 'young'? So to counter this he has also prescribed me Fosamax and Adcal-D3. The adcal stuff is just a vit D supplement, so no great fears there, but the Fosamax is some sort of bone strengthening stuff (some sorta acid, I forget exactly what now), and so I read the possible side effects and 'when not to take this medicine' stuff as usual. This included instruction not to take if you have/are suffering from stomach problems including ulcers. Ulcers. Ulcers. Ul-cer-a-tive colitis... Bum. Both the doc and the chemist assured me that this was strictly related to the upper digestive system - the doc looked it up on the computer and the chemist looked it up in her little black book. But the seed is sowed...
Anyway, they didn't have in the chemist, so I 've ordered it. Excellent news, as this means I can delay any decision for at least, ooooo, a day.
Interestingly, it also instructs you to take it 30 mins before breakfast and stand upright for that period of time. But only once a week.
Monday, 29 September 2008
I would also like:
- to see the same consultant every time I go to gastroenterology
- to wait less than 4 months for my 'rushed through' appointment to discuss azathioprine (still waiting...)
- to have access to drugs and therapies that are not yet even being considered by NICE
- not to be told by a consultant that he can't help me unless I do exactly as he says even when I have serious reservations
- to be able to get a prescrition from the hospital rather than having to make appointments with my GP that are a minimum of 2 weeks away
- to not have to experience the farce that is sitting in front of my consultant while he dictates a letter to my work, which he then emails to SOUTH AFRICA to be typed up and posted back to the UK...
- to get a blood test without having to wait for over an hour clutching a Tesco-deli ticket
- to have an appointment for an x-ray/scan that does not involve a wait of hours
- better pay and conditions for my wife - a nurse (yes, we are the classic key worker family)
- and so on and so on and so on ad infinitum.
And while he's at it he can bloody well go and find a cure for UC. I am not a Conservative voter. But I am not happy with my experience of the NHS as a sufferer of chronic illness.
The NHS, in my opinion, is much like the current economic situation - a hugely important issue used as a political football. Instead of cheap, and indeed faintly ludicrous, point-scoring opportunities isn't it about time political parties worked together to reach a solution instead of vacuous polemic and rhetoric?
It's not staying on a ward with other people that bothers me, it's the inexorable demise of our health system.
Friday, 26 September 2008
- The first two weeks back: no toilets. Not ideal for a man in my condition. Actually I exaggerate here, because it was the student toilets, not staff, and it wasn't all, but about 75%. However this still begs two questions: i) surely, if you are going to refurbish the toilets in a school of 1700 students over the summer holiday, you do it before they end? ii) is there not some law about the minimum number of toilets available - some sort of child-to-toilet ratio - that forces the institution to remain closed? I tried that second one in order to secure another week or 2 off, but to no avail (I know, I know...). I shoulda got out my NACC card.
- Incidently, I have worked at this school for 7 years and this is the second time the students have had a complete toilet overhaul. The first time they even got to vote on the colour (citizenzhip at work...). This second hold-up was due to the 'vanity units' beng unsuitable. Now call me a cynical old bugger if you like, but never have they refurbished the staff loo. And there are only 3 male cubicles in the whole school - a lenghty building, at least 300m from end to end. And the one nearest me is, frankly, disgusting. Someone should be ashamed.
- Crappy timetable. No free periods on a monday or a friday - surely the days when one needs to be cut a little slack?
- Good results for my last GCSE group. I cannot take much credit - they were a great group of kids. Sadly this already means somebody is setting targets for next year based on exceeding this year - because year-on-year the government/management/public can only perceive that results must get better (as measured by grade totals). Cos there's nothing invariable about 330 new children each year, is there?
- New GCSE group contains the most arrogant girl in the world. Cheeky kids I can take. Lairy kids I can take. Mouthy, sweary, downright bad kids I can take. But, arrogant kids I just want to slap.
- A strange cyclical UC situation. I have noticed this happening before. But not while I was on the meds. I am still taking 5/10 mgs of preds alternately, which has continued to keep evertything relatively stable. But I am definately going through a sort of poo-consistancy cycle. It goes something like this: On holiday things got loose (I put it down to the tomatoes) then it all got a bit stuck (change in water thinks I), then we got home and things loosened up again (change back to the normal water, plus pre-school mild apprehension?), then it firms up again, so much so I even started to carelessly risk olives (!) spicey food (!) blue cheese (crazy fool!) and so on, but it only got more stuck (even... brown bread!!), and now its got loose again (doh!). I have not had to go to the loo more than twice a day, during loose periods, too often, so its not been horrendous, but it has lead to more of the old mental scouring of everything I have/have not eaten/drunk. And several occasions of crouching and staring intently into the bowl trying to identify morsels...
- So, I 've made an appointment at the GP's for next tuesday to get more preds, cos I don't want to stop taking them just yet and I'm running out. And I've just found a bloods envelope (that I hid from myself) that reminds me I'm supposed to get a test while I'm on the 5/10 split.
- I'm back on those blinkin' yogurts...
- Everything has been put into perspective by the birth of my best friends baby boy. Fab.