Tag Archives: Sarcoid

Things arrive in three’s?

That old saying isn’t it. So, of late most of my post’s have been quite negative, I really can not help that, I would prefer some Stuart madness and have folks laughing their teeth out…

June see’s the start to the roll out of Universal Credit in my district, though in principle I do agree with having certain benefits combined, to give those in need, some kind of responsibility, it is a bind that in June my Personal Independence Payment is also being reassessed. Again, I did not expect this until next year but I have now learned the reassessment arrives about one year before the current award is due to finish and so that I also understand.

Also in June, I start my appointments to treatments at Harrogate hospitals, think I’ve mentioned somewhere else Bradford NHS trust was first used, then Airedale NHS trust and now Harrogate is to be tried to get another opinion for my Sarcoidosis body.

Three pretty dammed difficult stresses starting in the same month.

And so, moving on.

I’m shitting myself.

A Sarcoids Timescale – ish…

I’m really glad that sometimes folks do actually ask me about Sarcoidosis, though I think I’ve never mentioned the erm, so-called timescales, let me try…

Up to six months is usually diagnosis and for most who get this shit it leaves within about this period of time.

Up to 12 months, by now some pretty strong drugs are being given, usually started by massive dosages followed by slow reduction.

Up to 24 months, the drugs usually work and the body adjusts back to some kind of normality but, damage by the sarcoid remains.

Up to 5 years, this is a tough one as by now the ‘sarcoid’ has fallen into a period of ‘the medics really do not know what to do’ and that is not their fault. Sarcoidosis is very rare, especially after this distance of time. More drugs are tried, including chemotherapy types.

Up to 8 years, the drugs are as bad as the sarcoidosis, especially if, whats the point.

Up to 10 years, not alot is known but sarcoids can and do live beyond this timescale.

Up to erm, haven’t a fucking clue.

The mind games are bonkers, drugs are taken to try help with that. The mind say’s you can do something but you just can’t, but try indeed.

Sarcoidosis, it isn’t a battle to conquer it, we hope it simply fucks off, as it can but, the body remains damaged and does not recover, partly due to the long term usage of drugs.

My beard is getting shorter, that’s been mentioned a few times but, I will carry on writing about sarcoidosis as not many do, especially after so long.

I’ve changed alot since the below video, now a very old 53 years of age and tired.

Fuck it!!!

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…

It can really be a struggle to explain

After some treatment, last Monday a UK top ‘skin’ professor told me well done. This shit can grow anywhere in and/or out of me. Spread the Fucking word folks Ffs. Yet just please understand; There is more chance of remission with cancer. We don’t say this because we get attacked when we do, but we are looking at a reduced lifespan.

ff

One of my ‘pet’ hates, is simply when folks compare illnesses and death. Illness and death is not a competition.

Clear?

Here I am, left this alone for a while as I’ve been somewhat worried that sarcoid was on my heart. And here are the results…

Clear
I’m so so chuffed.

Those appointments

The hospital consultant doesn’t think my heart problem is related to sarcoid (hope it isn’t, phew), so we wait for the days testing on 7th July. Told the doctor of my bizarre world, they seemed to get worse a few months ago when the Azathioprine dosage got doubled to 100mg/day, proper bonkers? And, it’s referred back to one of the top skin specialist’ at Yorkshire clinic as them damn feet, arrggghhhh. Oh, as for the heart, I would prefer meds rather than a pacemaker, I just think my body might reject? a pacemaker?
Warm rain

Up coming hospital appointments

Hmmm, today I am to attend Airedale hospital for my regular respiratory meeting. One of the main things is the damn tiredness, it seems to be getting worse. Though, could this be related to the heart problems? After the blue light and sirens, soon I will be seeing the cardiologist for three hours of testing. It could be a number of things? Also, my feet, arrggghhhh…
Foot 1
Foot 2