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