Well, that is news, great news! my sarcoid is sort of leaving me, Stuart Briggs in remission, woah… more soon, much more soon, keep watching…
http://youtu.be/rYf4K_b62sk
Iv so much to write, about so much! but, this has been the coldest winter in ages, in longer than my 48 years, its my first winter working while being a rare sarcoid, this past week iv been learning some pretty tough new skills at work, enjoyed, its been a superb challenge, but then I get home and just need to regenerate my own heat and eventually hit the bed.
Lets have a reminder of the weather towards the end of March 2013…
What appear like hot ash plunging to earth is simply my phones flash against the falling snow.
What appears like a street light is simply the flash against the near horizontal snowing!
Yet the same week in March 2012 I performed the following song, my own song about Sarcoidosis, the only song about sarcoidosis on our gorgeous planet, aptly named too…
Memories of a gorgeous March day.
Jeez, we know the usual saying is mind over matter, but, matter over mind seems to be kicking in – ouch…
Well, today it was another visit to the Leeds Dental Institute, the upper right ‘2’ needed taking down to gum level for a denture to be fit, ended up having some huge root canal done, the dentist – not a student, mentioned that it is usually two visits, and that the root was in pretty bad shape so decided to do it all. He did a great job, very polite, I must be honest though, I can’t wear the denture, they are making another but iv no chance of singing with them.
Got a very well wrote letter from the higher courts, at last they appear to have done some research on sarcoidosis, even mentioning some parallels to its cousin, cancer. As expected, I failed, but they seem to recognize its not straight forward, though they don’t mention the words ‘grey area’ I have another two options to take it forward, one could cost a few £’s…
Im so close to getting sarcoidosis more noticed, or maybe not? I need to breath for a few days and think about it all, the UK Biobank (three years ago, before I knew I had sarcoid, I was selected to take part), after recently re-contacting them, they want to do a minimum three hour test in Stockport, I could use this to run in parallel with my potential fight against the Atos assessments and the ESA?
In the space of a few months I went from being in the fittest and healthiest 3% of 40 – 69 year old’s to erm, not being too well at all!
What a nice view, hmmm, but with a little snow I feel sure our transport will grind to a halt claiming its the wrong salt, or is it the wrong type of snow?! thing is, I do have a very important appointment at St Lukes today, we need to know drug and direction, as it has been mentioned maybe different medication? kind of worried about it, especially after the last few weeks, last week I felt dreadful, well, unwell, well, unwell, jeez my body, at least working allows my mind to somewhat keep away from the sarcoid…
And after only 30 minutes…
I think it has been wise to cancel my appointment, they do chat with me on the phone so lets see, I can not take the risk of getting to hospital then getting stranded!
To be honest, it is the first winter as a one in ten sarcoid, and I am – thankfully – working, all will still be fine, the direction is good.
What a couple of days it had been, very glad to be back in work, but how do I explain in my return to work interview (after being on sick leave) that im not really sure what was wrong? not to forget, I achieved my employment through Remploy, Leeds, and so the company know that I have a stupid and rare condition. I do chat with my consultants and doctors, the best way to explain, I have had the flu, yes influenza, it can last usually between one and two weeks, me, two days…?
Let me try explain, I caught the flu, it went absolutely mad in the first 24 hours, probably because my immune is suppressed by drugs, and? after that 24 hours the sarcoidosis got a ‘sniff’ that something was indeed wrong, and so the sarcoid attacks the flu, and pretty much in 24 hours the influenza has been neutralised, or has it? what happens next, the sarcoid carries on attacking but then the Prednisolone kicks in and again suppresses the sarcoid.
You now know what I mean? ok you don’t…? me neither, and nor really do the consultants, but in a shell nut its been mentioned that in 48 hours my body has probably been through what a healthy person might in one to two weeks of that there flu bug, and that alone can leave you feeling trashed and knackered, but I got into work, and managed to do as much as I could.
It doesn’t finish here, I’m part of the governments ‘Biobank’ scheme, more later…
It’s all random shit? questions welcome, as for an answer, it might be vague…
This morning at about 2:30am my body went bonkers, I needed to check my eyes yet the vertigo feeling was hideous, I did not manage to get a photo but both eyes had turned red, imagine the worse hangover, times it by 10 and then throw in the flu bug, that is something of the feeling, had to phone in sick, proper bind.
Going to rest up, haven’t a clue what started it, maybe I don’t rest up enough at weekends? my diet is sound, job is spot on, the walking during my commute is bang on, one thing, and fingers crossed, my lungs seem to have held out.
This crap illness will not beat me, I have too much to achieve and view over the next 20+ years…
Just a short post here, today while in Topman with my sons, well I almost passed out and hands went tingling, its the first time its happened, more than likely a mixture of sarcoid, meds and the crowds, hard to explain but its one of the reasons im not going to the Bradford City v Aston Villa game, a good day at work needs rest and not a long exciting evening at a mega busy stadium, im still adjusting to working full time, if only I could explain it better and then folks will understand…
As if by magic this spot, or lump is best way to describe, it kind of just appeared and then went away, hmmm…
, read the Blues in Britain magazine review or listen to my BCB Radio interview.