That old saying isn’t it. So, of late most of my post’s have been quite negative, I really can not help that, I would prefer some Stuart madness and have folks laughing their teeth out…
June see’s the start to the roll out of Universal Credit in my district, though in principle I do agree with having certain benefits combined, to give those in need, some kind of responsibility, it is a bind that in June my Personal Independence Payment is also being reassessed. Again, I did not expect this until next year but I have now learned the reassessment arrives about one year before the current award is due to finish and so that I also understand.
Also in June, I start my appointments to treatments at Harrogate hospitals, think I’ve mentioned somewhere else Bradford NHS trust was first used, then Airedale NHS trust and now Harrogate is to be tried to get another opinion for my Sarcoidosis body.
Three pretty dammed difficult stresses starting in the same month.
I’m really glad that sometimes folks do actually ask me about Sarcoidosis, though I think I’ve never mentioned the erm, so-called timescales, let me try…
Up to six months is usually diagnosis and for most who get this shit it leaves within about this period of time.
Up to 12 months, by now some pretty strong drugs are being given, usually started by massive dosages followed by slow reduction.
Up to 24 months, the drugs usually work and the body adjusts back to some kind of normality but, damage by the sarcoid remains.
Up to 5 years, this is a tough one as by now the ‘sarcoid’ has fallen into a period of ‘the medics really do not know what to do’ and that is not their fault. Sarcoidosis is very rare, especially after this distance of time. More drugs are tried, including chemotherapy types.
Up to 8 years, the drugs are as bad as the sarcoidosis, especially if, whats the point.
Up to 10 years, not alot is known but sarcoids can and do live beyond this timescale.
Up to erm, haven’t a fucking clue.
The mind games are bonkers, drugs are taken to try help with that. The mind say’s you can do something but you just can’t, but try indeed.
Sarcoidosis, it isn’t a battle to conquer it, we hope it simply fucks off, as it can but, the body remains damaged and does not recover, partly due to the long term usage of drugs.
My beard is getting shorter, that’s been mentioned a few times but, I will carry on writing about sarcoidosis as not many do, especially after so long.
I’ve changed alot since the below video, now a very old 53 years of age and tired.
Yes that is incredibly tough to work out but here I try and in order! phew…
1980 – Left school at 15, too young for the dole.
1980 – Bradford Hauliers, vehicle mechanical yts shit.
1980 – Stephensons, metal wire operative yts shit.
1981 – J Clark engineering, machine operative, not shit, some nice folks.
1981 – Wileys cycles & toys, mechanic/sales person, loved it, brilliant owner.
1983 – RAF, painter & finisher (panel beater etc.), great friends. PVR’d.
1985 – Dole.
1985 – (Name?) Roller shutter installation, labourer. Shit.
1985 – Jade cycles, mechanic & sales, good-stole loads of cash & components.
1986 – Dole.
1986 – Maxicuts shop, general mug.
1986 – Cardinal shop fitters, shop-floor operative shit but met a good guy.
1987 – Hallfield garage, panel beater/sprayer, set of cunts.
1987 – Dole.
1987 – Metalbox engineering, stores/labourer, loved it, left because-ask…
1989 – Denso/marston radiators, machine operator, totally shit.
1990 – George Barker, refrigeration assembler, nice job, too many cunts.
1994 – Schwitzer Europe Ltd, machine operator, superb job then bad shifts.
1998 – AETC Ltd, setter/operator, super job, then supervisor/improvements.
2000 – Hurel-Dubois, cell manager, absolutely loved it, best job ever.
It’s a total shame, my personal life changed to being totally fucked up. Thinking I could have been very good there but life eh. Met a best friend ever though.
2002 – Reiter automotive, shift manager, enjoyed but I was fucked.
2003 – Dole.
2003 – Plumber, thankfully a couple of very good friends took me on.
2003 – Started performing with bands, many gigs.
2004 – Plumber/joiner/electrics/carpet fitter. Thank fuck for them.
2006 – Reached fourth year of plumbing (gas) but construction crashed.
2006 – Many gigs, with backing tracks solo, kept with bands. Solo was shit.
2007 – Hindle gears, machine setter/operator, it was OK.
2007 – Can’t remember company name? Machine setter/operator, shit.
2008 – Birkby’s plastics, Improvements engineer, they wouldn’t listen.
2008 – AETC Ltd, machine setter/operator, loved it, started feeling ill.
2009 – Metalbox engineering, progress chasing, very good but bad mind.
2009 – 600 Lathes, Shift manager/improvements, OK but even worse mind.
2009 – Dole.
New direction as I thought it was the previous jobs starting to make me ill.
2009 – Tong school, art & craft technician, loved it but still felt ill.
2009 – Allied healthcare, support worker, great job shit company.
2009 – Airedale hospital, support worker/lean team, absolutely loved it.
2010 – ill, mainly sarcoidosis but the mind also fucked up big time.
So I thought I had finally found a dream job in healthcare through the NHS at Airedale hospital. Worked with older folks and mentally ill folks. I loved it, the improvement side was secondary. My manufacturing background was perfect for them, as was my ‘firm’ stance! Anyway, job went.
2012 – Job through Leeds Remploy, administration/telephone work.
2013 – Body fucked up big time.
2014 – Done.
Another thought, does having so many jobs look stable?
Wrote while all the shit was going on, only after all these years does this really make sense…
Yes back in May 2010 I started having stupid bouts of illness.
In November 2009 I achieved getting on at Airedale Hospital as a healthcare support worker. I had started having training for the next level – senior as I was pretty good and had a manufacturing background. Because of my background and experience in improvements the management were very keen. It is work smarter not harder for those who can’t or don’t want to understand – unfortunately at that time many of the nursing staff didn’t want to or couldn’t understand this philosophy. I did witness lots of pointless waste, it just needed education. Airedale took me on board as part of the lean and improvements team, not cost cutting team.
Something that I was really looking forward to, I had started helping the mental health team with a potential permanent move on the table, they would easily have got 20 years out of me…
On this site. I mean, when I do post so much has ended up about my Sarcoidosis and the shit that goes with it. Perhaps I should try getting back to doing more music, more writing, more cooking, more nonsense, more of the less and simply just more?!
Any way the sarcoid update, yesterday I had four x-rays on my spine, last week was to the hospital maxillo facial check up, between two and six more teeth need to come out, jaw/facial bones are somewhat a mess. Advised trying to drop the Prednisolone to 2.5mg/day from the 7 after the maximum of 40mg/day (I was was fucked), currently on 5 and do get the warm chicken feeling!
So much else it has confused the shit out of that ‘matter’ that bounces in my head. A few photos that give a little more of the current progress – is it?
This is some advice that has been mentioned but, these supplements are they only ones we know that can actually be damaging for those with Sarcoidosis.
Then this booklet which is mainly for older folks than myself!
So, our latest hospital appointment. It seems the bones are showing thinning and wear and tear leading to Osteoporosis. Ok, we are aware that this would happen due to the prescribed medication to try and manage the Sarcoidosis.
The weekly Alendronic acid and then the monthly Ibandronic acid just gave too much in side affects so it had to stop. Next step is to do a yearly infusion, this too has many side affects, especially us with Sarcoidosis. This infusion can actually cause the bones to go brittle and something called ‘jawbone death’ can happen phew. Our teeth are falling out, brushing shows little blood. We are far from perfect when it comes to teeth but it is mainly down to the medication, lack of vitamin D and Calcium and that bastard called Sarcoidosis.
Hmmm, ok we get that, but vitamin D and Calcium supplements can be harmful for those of us who live with Sarcoidosis – are you keeping track?
So, it seems my MP might have helped sort something out with the benefits. The welfare finally accepted everything, but the hassle getting there was dreadful. My MP – Tory, I know I know, but they have been very good. I’m hoping this blip is sorted and then I should be covered through 2019. Next, at 45 years old I never expected my body to pack in, tried working through Remploy, body packs in, yet I still feel embarrassment to receive benefit help.
I’m very proud to have served in the armed forces. Too many ‘do gooders’ you know the type, we all know of the ‘posh hippies’ that state the world is a wonderful balanced environment. Lets not forget, when I got ill at 45 years of age, ultimately it was left to the forces charities of the Royal British Legion, and Ssafa that helped me resettle, as at the time the government abandoned me, mind you, sarcoidosis played a huge part, fortunately, in an unfortunate way.
Twitter is just too short. So, today I spoke with one of my doctor’s. She has great humour… Anyways, after last week’s drop from 8mg/day of pred to 7mg/day, we have decided to put it back up to 8mg/day. A few years ago when “we” tried similar my body packed in and I ended up on 40mg/day for a couple of months. My lungs looked like tree roots.
Last night (Thursday 21st Jan 2016) was my worse in years, my joints and bones kept me awake that seemed all night, but I did dream of a plastic knife striking my arms, thankfully it kept bending. We have arranged for more bloods taking and then an appointment afterwards. Yes I’m stopping two therapies for my grey matter, as that pulp say’s yes to everything, but the dammed body then say’s fuck off.
What I mentioned to the doctor; I’m just an experiment, it’s not the fault of the medics but they don’t know what to do. I’ve dropped into the one in 100k of folks for having long term sarcoidosis and it’s shit. They can cure cancer, but they can’t cure sarcoid.
Have I had enough? I’m getting full up.
Still, I can’t believe various real life (ex) pal’s called me a scrounging lefty cunt – and they were serious.