Tag Archives: Sarcoidosis

It is about seven years ago.

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…

Anyway = Sarcoidosis started.

Perhaps I should do more?

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?

Sarcoid to date

Maxillo

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.

Bones 1

Then this booklet which is mainly for older folks than myself!

Bones 2

Something relaxing…

Watchful paranoia watching me.

Update – me, myself and I…

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?

We are confused…

Me, myself and I…

Are fed up…

MP helps again

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.

Stuart Briggs in the Royal Air Force…

Charity starts at home…

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.

Briggs is in here! - Copy

Me, I’m a nice geezer…

Me own

Where, just where…

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.

Fuck you.

Right, finally trying to sort my Beep referral.

Bradford Encouraging Exercise in People (Beep), is possibly a direction that could be good for me? Lets see…

Beep

Sarcoidosis and Zero Vitamin D

I just don’t post enough, though I do tweet and hope folks get to see some? At the beginning of November 2015, I started a typical cycle of being shattered, fatigued, tiredness, exhausted etc. Went to the docs, mainly because I had hit quite a low mood (more on that later). He has been pretty good with me, anyway he suggested some extra bloods testing. Amazingly within a few hours the results were back, I have zero vitamin D in my body.

So, I’m prescribed Invita D3. Two be taken once per week…
D3

 

I did my usual and researched this drug, guess what, it carries a warning that patients with Sarcoidosis must be treated with caution, the warning is pretty much that this medication can be dangerous for us sarcoids. So, zero vitamin D in sarcoids is dangerous, as are the meds to treat zero vitamin D in sarcoids, jeez.
Sarcoid and D3

 

After phoning Addingham surgery, the doctor returned my call, he went through his BMA manual and found the advice in some small print, he thanked me and we are going to try with half the dosage.

More growths are happening inside my feet, especially the ball of the right foot. It can feel like I’m constantly walking on pebbles, so I’m awaiting various scans for this.

I have never felt so tired, and fed up. The mental health team have got me in really quick; it took only two week. I know it can take some folks months. I’m going to be treated with Cognitive behavioral therapy (be careful how you key the CBT into the search engine – ouch!) which we hope will work along side a current medication of Fluoxetine. When I did see the doctors screen it appeared to have a red background, that is a first time.

Sometimes this would be the best way…

It’s shit, I swear.

A nice erm, foot?

Its like, how much am I supposed to suffer before many, a very many folks believe me? I’m going to keep this simple with very minimal writing, photos should tell a little. Sarcoidosis mimics, masks, & mutates any other condition, known, and unknown. The following three photos are of my left foot. Oh, its only physical pain, that I can take, as for the mental trauma, that I struggle with.
Fuck feet one
Fuck feet two
Fuck feet three
This shit is real. I never ever expected to get stupidly ill at 45 years of age. Tried work through the brilliant Remploy, my body packed in. The UK’s welfare finally accepted what ‘all’ the medics were stating, and even backdated this.
Sarcoidosis is a cousin of cancer, but the names are very different and can grow anywhere upon within me without any form of warning. For the non believers, I’ve had enough of you, so fuck right off…

Right!

This post is a slightly different yet very difficult one to explain, and even write. For one, I am not going to spend too much energy on it.

10th Oct 2010 I was diagnosed as having sarcoidosis. I had all symptoms (the medics loved me!), including shadows in my body, and weird shit on my skin and in my eyes. What followed this diagnosis of a hideous illness was loss of job, loss of home, and eventual bankruptcy (charities Ssafa and The RBL had got involved by then). Anyone wants to know why the government pretty much abandoned me then please ask! I went down on record as single white male – hence I’m at the bottom of all list’s for help.

Sarcoidosis came to my rescue, because I was ill, a home through Bradford’s open moves (lovely lady helped me big time), became available two weeks before I was due to be evicted (I was at a top friends home when the call came through). Daft thing is, I’m sort of ‘cool’ with this as it’s all a blur…

What followed was ridiculous assessments by Atos; I was fit for work yet my body was falling to bits! The disability section of the employment office were quite sickened, as were my medics, even my GP banged his desk when we were going through ‘stuff’ ffs. I did still try carrying on with life as erm, most would class as ‘normal’ yet the weight loss was bonkers.

I volunteered to get work through Leeds Remploy. They couldn’t understand why I decided upon this, I did because I wanted to work. In the meantime my case had reached the parliamentary ombudsman (MP involved). Even though I failed at each stage of getting there, I got there! This in itself wasn’t good for my health, so I finally, and annoyingly withdrew. At the same time other drugs were being swallowed, esp the 40mg/day of prednisolone.

Harping on far more than I intended.

I got quite ill when working through Remploy and then that job finished.

Early 2015, and after Atos visited me I was awarded (means tested) ESA and placed into the Support group, I was awarded (means tested PIP (replacement to DLA)), and to my surprise some was back dated. I’m covered until 2017/18 and do try return to friends some of that passionate help they gave me. I still intend on working, but my body fails under any form of stress and anxiety, do the doubters want me to die – answers please…

The idea of my benefits is to try and allow me to live rather than survive. So, to those who have called me a lefty cunt and scrounger, to those who do wonder how and why, and to those who don’t understand what and how the ‘system’ works.

It’s fucking difficult…

Churchill-first-V-sign - BLIP