Tag Archives: Sarcoid

Hmmm, new meds

So, whats with these new meds, how do I take them? as an insult or helpful! Brufen Retard it is then.
Brufen
Started on Friday evening, just one tablet for a week and see where we are, then if need be and in the second week up dosage to two, if no improvement after that it could be back to the dry marker board. One thing is for sure, I really can not take anymore time off work, lost over a months wage so far, yet since Saturday I have been burning up and off, we will we get there.

During the week I had a reminder

Let me cut some shit out. A good few years ago I drank myself through about £10k, my closest pals know as do some of my family, they were well upset – as you can imagine. I certainly know what its like to be ‘boozing’ too much. That there deepest of holes takes some getting out of, some of us? do, it takes time, ‘guts’ and patience. This is the article I wrote, all facts, and the below video is all about those times, though wrote and recorded a few years later. Listen to the full song, I’m still a hearing it!!!


Did you hear how empty my flat sounds?! Thankfully I got rid of that memory full guitar. Weight loss through sarcoidosis. I dropped to 8 stone and then put on weight through the good, bad and ugly Pred. It is not a lengthy blog as I see no point in trying to say what I know and for many others to guess and carry on guessing… Save on utilities here.

Thats five week off the Pred

Well – I start too many post’s with that so; Five week off the Prednisolone, on some other meds but how odd it can make me feel, the hands stop moving during the night, knitting needles push into the rear of my eyes, skin looks and feels weird, other stuff but my ankles and knees are a nightmare.

Thinking about full on thermal underwear for the upcoming challenging winter, my first winter off the Pred and in work. Big big challenge that I will win, head says one thing the body tries to sway the other way…

A good strange time

Well, so far this week things have been sort of steady, a good meeting at work on Monday with Remploy, my team leader, and department manager. I just needed to clear everything that had built up, including apologising about various things from myself. As for the sarcoid, hmmm, it is my first approaching winter without being on the bad good Pred, I can already feel stuff happening, keep those fingers cracked across…

Discrimination or not, that is the question

Here is some truth through my passion of freedom of speech; freedom of speech, empty promises, over qualified, might get bored, and earmarked vacancies, but could it be discrimination? Jeez, this past year I feel that I have experienced them all, especially at work. Very grateful to Leeds Remploy for getting me into work at Enterprise, and very grateful to them too. But then, some facts.

I was promised so much upon achieving that position, and so, that story begins… One thing is for sure, my sarcoidosis is certainly playing up due to some recent events, including the redundancy situation and my want of trying to progress. Read on…

Redundancy

 

 

 

 

This was at the beginning of August, though told not to worry its human nature to worry.

Dot ankles

First thing that happened was my Ankle dots, this is a first sign that the sarcoid is becoming more active.

Bloodshot eye
This is certainly an activity that sarcoids know only too well, it can quite easily develop into Bilateral Uveitis. On Friday 27th Sept both of my eyes started.

Simply put I just could not understand why I failed at three interviews I should have walked into, other positions came up without being advertised that I was more than capable and qualified to do. This week I recieved a letter saying that my new position is gas restoration administrator, that is a high stress job, the most stressful in in the office that no one likes doing, especially on £6:60/hour, although I have the current tax credits but only till March 2014. If any working position a one in ten sarcoid needs to avoid its a stressful one. No wonder my body has gone and started reacting again, jeez.

When I was at the initial interview I was told plenty of opportunities would be available for me to progress. At home I got a few phone calls from the manager who mentioned ‘off the record’ I would be able to progress pretty quickly with the qualifications and experience I have; qualified plumber, trained in the 5Cs by the SMMT, HNC Technology and Management through Leeds Metropolitan University, and been a manufacturing manager. I had two other jobs on offer through Leeds Remploy, also someone else from my current place of employment at Pottery Fields House in Leeds phoned to offer a position, but I had given my word to the manager of my future team.

Lets cut quite abit out, I asked abit about progression, I was asked by another manager to take my 5C improvements documents and information with me, so I did, and after two weeks of no one showing interest I took them home, that was my first thought that I had made some kind of mistake, but glad to be working, proving to some degree that one in ten sarcoids can work, but I felt my chances of progression were much less than first mentioned.

Lets cut quite abit more out, in June I got a chest infection and ended up on anti-pneumonia tablets, chest infections can unsually kill sarcoids, especially the mentioned one in tens, that I have officially been told I am, proper scary times that. Before being that ill I did not tell work how unwell I felt until later, my lesson learnt to be upfront fully about sarcoidosis. I had a staged return in July with yet some further promises of progression, by the end of July the medics said that they believed I had gone into remision – fantastic!

At that point I thought I may as well start applying for other positions, and at the seem time my team got the redundancy notice, shit, bad timing for me as I need the sarcoid to stay none active. Three interviews later and those other jobs not advertised yet taken, phew, the reasons are absolutely garbage why I am not getting the jobs, the funniest of ‘your 5Cs knowledge and answer were not good enough’ eh! I’m trained by the SMMT – look them up! I even have my plumbing with the gas and pressure systems units. Before the interviews for one of the positions, I was told who would be getting it, then, I overheard two folks chatting about that job, but they must still get the C.V. in, yes that person got the job. I have started to be at a loss why I have not been getting jobs that I am certainly much more capable of than others! 27th September it finally hit me, from my previous experience we know a company is not supposed to discriminate but yes they do, it is not a nice feeling.

In May Enterprise were taken over by Amey, at Pottery Fields House Amey work for Northern Gas Networks, I so thought my experience and knowledge of the 5Cs and construction should have stood me in a great manner of progression, and now the current position that I feel cornered into is causing the sarcoid to raise its ugley head again. Yes my freedom of speech, nothing and no one harmed here apart from my own facts and me. All I wanted was a chance to progress and help the company succeed. Other stuff happened, I am also very glad of being given the chance to work, but we are laerning just what causes the sarcoid to become lively. Now I will stop right here.

Stu.

Pred withdrawal is a nightmare

This is the worse I have felt during the Pred reduction, took three months and now its been zero since Saturday 31st August. Last night and today have felt quite dreadful, I have sent work a good link explaining just how getting of the bad yet good Pred can bother us. The feeling is that the body is packing in, bad timing for work but I can not help that I had a peak of 40mg/day. Maybe check the link yourselves…

Getting off pred.

The Fluoxetine has been doubled

What a couple of months, I have gone from thinking my sarcoid is in remission, to then try and progress at work, failing two interviews (that I should have walked), to being given redundancy notice, to the sarcoid making a rapid return, to the depression showing its head, jeez. All I ever wanted was a job that allows me to make a living (rather than surviving), a positive and possibly challenging position, do stuff with my lads etc. you know the score…

Today is a zero Pred day

So, its the first time in a while, a very long while and onto zero Pred, tomorrow back up to five, then day after its zero, 5mg, 0, 5mg, 0… we do this for a month. Consultant spoke with me yesterday, he really believes my sarcoid is not active (I think it is slightly) and he wants me off the Prednisolone as soon as possible, its confirmed I am now at high risk of bone fracture, and that the osteoporosis is carrying on. My load bearing joints can be very painful, mainly ankles, hips and neck, and so its going to be more scans and consultants, but we can see the light!

See the light

Sarcoid ankles are back

I’m thinking a bumpy few months to years are again approaching, oh well, I had a few weeks of remembering what it was like to feel relatively normal! This time the ankles are gaining dots rather than blemishes?
Ankle dots

So fucked off

Its the first time iv opened a post in that manner. Last week, when last years acupuncture dots appeared on my ankles, I knew the sarcoid was raising its shit head again, in remission for two months and a steady reduction of the ‘Pred’ simply brought it on, proper fucked off.

Also heard I had not achieved the measurement technician position. Upon applying it was mentioned that they need 12, I should have walked it, obviously I didn’t, two rejections in a week, although the first I was way too informal, the second I tried…

Im on £6:60/hour, £13.7k/year, I work so hard, don’t fuck about, great for team moral and humour, huh… Very happy to have been given that chance to get back into work through Leeds Remploy, but the reliance on tax credits is also a major factor, the credits are due to drop early 2014, hence I would hope to progress within the structure, most are on a substantial amount greater than me. I know im worthy of a living wage and not a surviving one, still a few months, yet the sarcoid is here too.

It is so difficult explaining to folks it has returned, I knew last week but dare not say, once I say so then I get folks saying I might be wrong, it might be in my imagination, wait and see, chin up, fight the fucker…

As Bernie Mac said ‘I’m now tired’ in his hospital bed with pneumonia through a chest infection. I had a chest infection and needed anti-pneumonia tablets, still and though im tired, I will push on, I know most mean well, but please do not patronise me, sarcoidosis is a serious shit that causes death.