Bradford Encouraging Exercise in People (Beep), is possibly a direction that could be good for me? Lets see…
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Tag Archives: Sarcoidosis
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…
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.
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.
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…
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…
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?
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…
Sarcoid by Stuart Briggs
The only song on this planet we call earth about Sarcoidosis – and it is terrific! So, if you happen to StumbleUpon this post then please do share and pass the word around…
A truth teller…
This morning, on the way to the public bus stop. A couple, from No. 1 stopped me for a chat. They are both prison wardens and I get on great with them, but, they wouldn’t stop harping on about work. Now, this is a first. It was obvious, through their body language, that they were trying to find out more why I don’t? They know I have sarcoid, they even know that ‘we’ tried through the brilliant Remploy to help me. If ever anyone wanted someone to feel anxious and paranoid about being ill, this morning was it. I will challenge them another day. Proper annoying…
Toe being eaten?
It must never be forgotten. Sarcoidosis mimics, masks, and mutates any other condition. It does bother me more than ever that folk’s just don’t/can’t understand us. Though now I have a top? dermatology professor with me (with all the other medics!), I think the initial practice treatment on my toe looks to have failed?
No wonder ‘our’ heads can get mixed up. It’s proper hard work. Today I had serious thought problems – after almost five years of fighting this thing, and the drugs, and my mind. This isn’t mind over matter, it is quite the reverse. I’m not into the ‘chin up’ crap, it isn’t like that, but appreciate the thought?
Sarcoidosis = matter over mind.
