Tag Archives: Sarcoid

Eyes to be scanned and sores on my feet

My eyes are for scanning today, should be ok, though I am going to ask about reactor lenses, its just that the sandpaper feeling of eyelids – especially in sunlight – needs to be sorted, they can also get sore in the office, so its just more advice on how best to work around these issues, then I have the docs this pm, iv started with sores on the ball of my right foot, and a little on my left, very painful, they should have gone by now, I do wear Doc Martens as much as possible, they are superbly comfortable and so I just need some meds for my feet.

Extracting a tooth while being a sarcoid and its treatments

So this is where today and my appointment at the Leeds dental institute brought me; We’re not doing the op, I thought it were just minor, turns out it would have been much more!? its too dangerous, so we will see other options but they would also be reluctant to either bridge or insert a post, both can very easily cause infection.

If they now pull the tooth then the bone wont fill with blood and heal properly, that then spreads which can cause my face to collapse, that’s due to the meds and sarcoid, If they take me off the pred my lungs and hilar lymph nodes fill up in no time so we keeping me on 10mg prednisolone until Jan 14th and then see? its not just the pred, its also the alendronic acid and the phosphors? that are now in my body. Its not a problem, we can take the tooth below the gum and then sort it, im more bothered about a denture flying out when I get performing again!

And so to keep some colour on my feet!


Nice socks again!

Latest lung scan is showing improvent

More good news, my sarcoid lungs are showing signs of improvement! Iv not wrote much as im happy getting into the swing of working again, Im sure – or something like that, that being positive and given a chance to work in an appropriate environment surely can help, its something I will be writing a lot on in the near future, just another episode to, hmmm, life, my life! A few more appointments this and next week, and hoping for none over a little while, yeay…

A sarcoid at work

The first few days in my new job were good, very nervous on the first day, in-fact, when I got there and were being introduced to the sections and teams I burst into a daft sarcoid sweat, for those who understand its so annoying and embarrassing.

As I hoped for, come the second day the sweats had calmed lots, and I finally started some of the work by myself, and this second day ended with a team outing in Leeds, very good night indeed, I had to leave for the train at 10:15pm yet the one night you wanted the trains to be on time, then they weren’t, I needed to get to Ilkley, hmmm, I ended up getting the Skipton train and got off at Shipley, this was a plan hoping that the Bradford to Ilkley train still had to run, yes, what a great plan, back to Ilkley for 11:15 and a taxi on home.

The third day I felt much more comfortable, the team outing (Five female and four male) was a brilliant ice breaker! thankfully of my time leaving as some didn’t get to bed until 1:30 and 4:00am!

Yes im enjoying being in work again, sarcoids can work, im in the one in ten of sarcoids and will still push on, its 40 hours per week and so its vital to rest lots too. One thing that happened on Friday, my left eye played up somewhat, I had got some new drops and plus im at the eye specialist on 14th November, I will ask what else we can do? though I will be getting some reactor lenses glasses, although its a nice office working environment I still need to keep elements out of my eyes.

Onwards and upwards still!!!

Preparing for that new job

Its finally here, I get up in the morning to go to work, what a two and years its been, still not where I would like to be but a job is certainly a brilliant step in the right direction. Remploy and my JSA disability advisor have been great, too much to right at the moment but it will make a very worthy blog about working and being a sarcoid, a rare one in ten sarcoid at that.


One of the first things I needed to do was to make sure I have some reassuring help to keep at work; meds in-case I forget to take them at home, box of tissues, packet of wetwipes for if I need to freshen up after a sarcoid smelly sweat attack, heel supports for my ankles, nail file – I know but sometimes my nails go stupidly brittle and simply snap off, miniature mouthwash for that metallic taste I can get, and a miniature lynx for the future, erm, if I do think of anything else then I will get.


My advisor has been so helpful, here I have been able to get geared up for an office environment, all new direction for me, thing is, I do hope the shirts are appropriate, trousers are great but I wanted the shirts to allow me to some degree be me, oh, erm, maybe not as trendy as I think, or maybe I will make the clothing appear un-trendy ha… My intention is to leave one or two shirts at work, maybe T-shirts too?


The all important ironing, im not actually too bad with an iron, although seven shirts took me close on one hour, but saying that I was cooking as well, talk about multi-tasking, the future wife will love it! Well I must crack on and get my sandwiches put up, and stop panicking, and set my alarm, was I even got an alarm today as I don’t trust my phone to do the business every day, now what else?

Sarcoid Stuart Briggs has got a job

Getting employment with sarcoidosis, yes absolutely we can! the journey has been difficult and a long two and a half years, the challenge is huge, after being told I had dropped into the one in 10 of sarcoids my heart fell out with me, but to keep on pushing. I have a huge thanks to give Sue and also Sam, you see sometimes folks can and do help.

Working and having my sarcoid is going to be a massive challenge, im up for it… No stopping this ‘geezer’ im certainly not intending on parking my body and getting all washed up, not a chance, will keep on pushing sarcoid in all directions.


With support we can re-direct the force of nature, much can be washed away but like that there greenery, it can always grow back.

More on this later as its worthy of a longer article.

The glorious British 2012 summer

Just a little reminder here of that just gone summer, do you remember it? no? nor do I! mind you, we had a superb week in March, in-fact I did this song about sarcoidosis back then by the river Wharfe, if you viewed it then do you remember? no? oh those were the days of March 2012!


This must be the only song in the world about sarcoidosis, it would be great if we got all the sarcoid affected folks to have a listen, affected means as said, you don’t need it to be involved…?

Ah, yes, that reminder of the great British summertime, a raincoat, a camera, erm…


That video is pretty much near to where im pointing in this video, during the floods!


Jeez, my hair, I still have it, but its in a washing detergent box! in-case you missed the event you best check some self clipper attacking here, and just below is the result, hmmm, to keep or not to weep, that is my question, ah yes…

Space…

Space, just so you can not view it straight away…

More space…

Space is so required, one turn of that wheel in the middle of your mouse…

Almost there…

And here you see it…

Thats about a full turn of that mouse wheel!

No, that were about 3/4…

This is about 7/8…

And so…

The hair…

The Sainsburys job interview

As you may well have viewed, earlier in the week I had an interview at Sainsburys in Otley, 24 hours per week, part time and permanent. Im certainly sure I looked the part, much appreciated to Remploy for helping me with some advice. The interview seemed to go OK, mentioned I could cycle there and get showered etc, I could get a road bike on the cycle to work scheme, it sounded really good actually, until it was mentioned the position is temporarily until 5th January 2013.

I had spent six days really building myself up for this interview with the knowledge that im good at interviews and that im usually successful, the difference is, this was my first interview for employment while having a stupid rare illness in Sarcoidosis, not forgetting its only recently that they told me i have slipped into the one in ten sarcoid sufferers, so, and so as soon as that word of ‘temporarily’ was mentioned I felt like the floor opened a little, my fault as maybe I should have asked before we applied for it.

Now, it were also mentioned that other positions might occur after 5th January but these would only be 12 – 16? hours per week, I have done all my sums, I need a permanent position of over 16 – 20 hours per week before December or over 30 hours after December, one of the reasons I need a permanent position is simply that I don’t really need to be having to worry that the temp position is going to come to an end and have to be constantly searching for another job, I need a job where I can start and settle the best possible, It wont be good for me possibly having to jump from one position to another, I might think I can handle that but my sarcoid will think otherwise, difficult to explain, all involved seemed really helpful and understanding, I do want to work but with minimal ‘hassle’ if that makes sense?

Onward, sideways, zig-zagging but still that direction is up and to keep on searching.

Sarcoidosis the thing and all that

After nearly deleting ‘the thing’ page I decided not to, it might still offer folks some kind of sarcoidosis in-sight? Its almost two years since being diagnosed as a sarcoid, in that time I kept reasonably positive, yes sometimes I can write rubbish and harp on but its good for the soul? I was so hoping that in those two years I would have been one of the (95%ish) of sarcoids and it leave me, it hasn’t, its active and, well its all guess work now, about 12-ish in the whole Bradford district, so say the consultants.

It used to bother me when folks say I should be thankful its not cancer, sarcoid is a relative to cancer, it needs the same type of treatments, it is degenerative, its active and really bothers my eyes and lungs, and my mind, oh but that’s normal! the only difference in sarcoidosis and cancer are the names, that is it, illness is not a competition.

Im still taking on the Atos assessment that I failed on 2nd June 2011, the Employment and Support Allowance ‘system’ is wrong and corrupt, with my case now at the higher courts in London, but, my determination to get a job (probably through Leeds Remploy) is now a priority, I then need a car to carry out my gig/band direction. My third passion of cycling is much harder than I let on, yes third passion cycling!

Onward, sideways, zigzagging, but like the morning sun, heading in the right direction of upwards.

Atos, ESA and the failed system

I now have an appointment with my MP Kris Hopkins on Fri morning 13th July, we know the law has not been broken so its going to be a huge matter of principle that the ‘system’ seems to not recognise sarcoidosis, I will be writing an in-depth article on my experience of trying to get help from the benefits system while I was at my worse, which we know the system failed me. Thankfully I appear to be improving even quicker – we think? and my search for appropriate employment will deepen.


All I am after is a system which is fairer to those that can be quite seriously ill but with potential to recover, sarcoidosis is not covered like many other mainstream illnesses, if you put cancer, crohn’s disease, diabetes, and numerous other serious conditions into an illness mixture, what then gets poured out is sarcoidosis, the system fails us big time…