Category Archives: Blog

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.

Happy 21st birthday son

Well, one thing is for sure and that is; time never stops, feels like it gets faster, and faster, and faster…
21st

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…

Fucked up feet.

My feet are fucked, more later, but: Today, 30th October 2015, I collected my two pair of spectacles. Now, proper odd, as once I arrived in Leeds, my sense of direction went really weird. Eventually I found the Boots opticians entrance, then walked into the entrance to the left! What a fucking knob, so panicking I got sweaty, rushed out and turned to the mediate left: Boots…
My turn
These are they. The pair at the top are my reading ones, they are too tight. Boots knew this but I had to leave asap. I will return for them adjusting, but thinking if I learn better, then my medics advice to use sunglasses at all times can be in-cooperated?

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

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.

Paranoia and Facebook

Erm, yesterday I thought Facebook had deleted me due to my very varied views, upon life. Today, my views are still the same. Sorry I wrongly blamed ‘you’ Facebook lot… Blast…

Facebook is shit!

Short before a storm. I reduced that Facebook friends thingy from over 500 to about 100. I post about facts, proper facts, about folks thoughts, proper thoughts, yet various twaTs report some of this, then I get taken down, until FB see I’m reasonable. I’ve had enough of Facebook and those who report me. I hope some of those I have remaining find me on here – my site, and/or through Twitter. Facebook is truly shit for folks like me. As for you twaTing ‘do gooders’ fuck off from my life – cunTs. I’m also so much more annoyed as my Sarcoidosis page is growing so much, arrggghhhh…

Update, erm oh, Facebook crashed, sorry folks, but I had a nice rant though!

Churchill-first-V-sign - BLIP

Hang on…

Having some problems with the site, erm…

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.