So glad to be back with the creative writing group. My three months absence had to happen, as much of the writing brought on many certain memories. Ears and eyes open? watch out!
When I was well, erm, sort of, certainly before sarcoidosis kicked me to fuck, this song is like, a build up without knowing why? Feel the angry build up through the end…
Which did cause another factual song, without an angry build up, but a calming strange end, to end an end…
Some ‘flat’ voice memories, hard to explain but here…
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 posted this to a Facebook friend, he tirelessly raises superb debates…
“I admire many of your recent post’s ****, you are saying what a massive % of folks are thinking. It was asked on here (your page) If I was a supporter of a chap called Don Trump, after absolute minimal research, Don Trump is simply a version of Nigel Farage, and is saying what many dare not say. You ****, like me, do say as we feel, right, wrong, loads of in-betweens, but we can debate, we can acknowledge others views, where as a very few who answer you can’t = facists. Your a brave man and I admire you.”
Oh, facists as they only have their own views, and no way will they acknowledge others.
Anyone find a problem with this photo?
All the men have a brolly, and the women huddle like penguins…
Well, my three year old hTC Salsa finally gave up its dance. So, ended up getting a Bush Spira A1, with ideas to blog on the move, not just to tweet, but do it direct to my site. I guess it really is easy, but my layman’s terms of technology can fail me – big time!
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.
