Tag Archives: Sarcoid

Oral hearing is arriving

Well, here it is, the hearing, I have one hour to explain why it is all wrong, the hearing is about if any law has been broke, no it has not but its wrong, I will work through my case hearing and then take it to the parliamentary ombudsman, I will succeed in getting sarcoidosis sufferers the recognition we deserve.


6th Feb 2011 was my initial assessment, its (my maths are not too bad) about two years to the date, and all im after is better sarcoidosis recognition, I think, I really think I’m capable of doing this, and what a great position to be in, that I have got a job through Remploy, I just wanted ‘proper’ support while we had to find out what my sarcoidosis was upto, thankfully Ssafa and the RBL helped me big time, no, the system did not fail me, it was Atos that caused the system to pretty much not believe me, even when the medics and local MPs wrote in my support. If you have nothing on then get on there.

A good bad santa

Best Santa film ever, absolutely bonkers, love it, Bernie Mac is the security guard. As I get settled, comfortable, and accustomed to work, then part time Santa’s sound a great idea!!!


RIP Bernie Mac, fellow sarcoid, most do not understand and doubt us.

Letting folks down

Tonight I let some pals down, they have been great over the years and I were looking forward to ‘mad Friday’ for the start of most folks Christmas break, I just struggle to explain. In April this 2012 my sarcoid attacked me big time, worse than the diagnosis of those early times, and so I pushed myself and we reckon its under control, great, get with Remploy Leeds and achieve a job that I proper like, I will keep this short, I am a one in ten, no silly not the UB40.

I appear to be doing what most of the rarest sarcoids unfortunately struggle to do, I have been given a chance to work, and somewhere that I enjoy, folks are great, humour is mad and, erm, yes they do blush me sometimes, but that is definitely a fair game?

Where were we? ah, I really am rare and pushing the limits, I need rest after a good weeks work, my head did say up until Thursday morning that perhaps I can do mad Friday, I learnt a lesson at the works ‘do’ in that I need to pretty much have minimal movement after a days work, oh it really is so difficult to explain, I really am enjoying work but my body packs in if I don’t rest enough.

The Swan at Addingham

Last night was a special folk evening at Addingham’s Swan, , festive evening, but this short post is just to say I did not go, its my first winter working, and having sarcoidosis, the last few weeks I have learnt lots and pretty much adjusted to fit, the reality is simple; I need to rest as much as possible, yes I feel like my boundaries are being pushed but diet, rest, sleep, exercise and work have to be mastered before venturing out during the week.

Was is a sarcoid attack?

Hmmm, I weren’t going to mention but I guess folks noticed? today seemed to be my first sarcoid attack while working, thing is, is it really classed as a sacoid attack, what is one? if it were a dreadful hangover all day then I would be thankful of it, but it weren’t, I think I know what triggered it, so will, and yet again adjust to fit.


This was last week before the Christmas party, blimey, look at me!!!

Higher courts hearing

218 pages later my case has reached the higher courts for a hearing, obviously if they thought I was out and out correct then I would not need a hearing, it would have gone – yet again – straight to appeal.


I’m super happy to be working, yet all I am trying to prove is that at the initial assessment I was quite ill and was not allowed to work – fact. Atos simply had tick boxes, has he got a serious illness – no, does he take medication that can cause adverse problems – no, whereas in fact both should state yes. Two years ago all I was after was the support to get me to the point of where I am now.

I am certainly not holding my breath with problematic lungs to say I will win this but I know the law is wrong.

Name that tune

Could someone please put me out of my thoughts of that I will never find out, today at the doctors, and for the third time running, this tune came on, none of the receptionists know what it is, they even said after my last visit the doctor came out to ask as I also asked him!!!

What is this tune

Its a little rough as it is recorded on my Orange Rio, but the best times to turn it up are between 30 – 41 seconds, someone must know the tune!? I really do need a better phone now! Please someone put this misery to the opposite and make my day! I went to the doctors as unfortunately this morning I still did not feel too good after the Alendronic acid yesterday, it wont happen again and they prescribed me some stuff to help settle my stomach during the day.


We are to marshall my tummy! I really am doing everything and anything possible to ensure I can work well.

Alendronic acid

The worse meds for me seem to be the alendronic acid tablets, I used to take them on a Wednesday but since starting work I changed them to Saturdays, simply because, after I have taken them I can feel pretty rough for too long, thankfully they are just one per week, for those who do not know they are taken first thing with about 500ml of water, and then I must remain upright for a least half an hour, problem being, I forgot on Saturday morning so took it this morning, yes felt quite rough and bed soon, its early but that is certainly not a problem, this sarcoid rests as much as possible.


A little while ago I contacted my consultant about something that was beginning to get too embarrassing, as you can see he reviewed my latest scan, thankfully its not the sarcoid, they reckon the prednisolone can cause gastric problems, but I feel its more to do with the alendronic acid.

Last week I had bacon butties on four mornings, after each time I got some stomach pains, but the morning I had no bacon butty I felt ok, conclusion, I have decided to try something different in the mornings, as I can now sort of afford to do, but it might not be as tasty!


I am terrible with cereal in a morning, in fact any form of early morning breakfast, I aim on taking two breakfast bars with me and probably eat them on the train, its claimed a couple of these cereal breakfast bars in the morning can be really good for you, I will try, even after the bacon butty I felt sweats coming on, so it might be weekend only now!


I’m also going to have one of these Actimel drinks each morning, the overall target is to settle my insides for the working day ahead.

So I need to get appropriate treatment to counter a drug that counters another drug… Proper glad of works disabled toilet, its quiet and I certainly do not feel that embarrassing thought of someone listening to a hideous fart and ‘stuff’ ha…

Those feet are made for walking

You know the old tune; ‘one of these days they gonna walk all over you’ erm, I forget who it were though? mind you, along with my colourful affray of little cotton socks, well they kind of fit with my superb colour schemes…


To be honest I think they look brilliant, its just to carry some of the true senses through surely! there again, on the inside my feet are not healing just like they should, even with the comfy Doc Martens, its a sarcoid thing, but I have the comfiest pads possible, soon to pick up the prescription cream too…


We must remember that exercising sarcoidosis – within reason – is a very good positive, since getting into work again I need to walk about 50 minutes per day, yes its hard on the feet but we getting that sorted, another benefit is that it helps control the prednisolone weight, as does a decent diet!

I guess they must even be hardly noticed while a toe job happened, hmmm, erm, well a job to clean between the toes – yummy!

Testing for sleep apnea

A few times I woke during the night and felt like something was wrong, I told my main sarcoid consultant and he referred me to the sleep clinic, in years gone by patients had to spend nights in hospital testing for sleep problems, this new piece of kit that I had to wear is called an ARES machine, and yes you must be careful with the spelling! and so I had to spend a few nights in this head gear.


Apparently it test’s for lots of potential problems but certainly its not a dream catcher! I reckon it is better than spending nights in hospital being tested, although the machine does talk to you during the night “You may now adjust the unicorn on your forehead” and it repeats until you do, it says other things but to be honest I can not remember. It has three sensors on the forehead and a nasal cannula which also acts as a sensor. Awaiting results, im sure it will be fine.