Living with sarcoidosis, the good, the bad, and lots of in between.
Today I had differing news, but I found out a girlfriend of a few years ago passed away, we are of those that were glad we met, I introduced a friend of mine to her friend, seven years on they are still together, RIP Tracy, you are and always will be a very nice lady, was only thinking of you yesterday. I will be attending next Tuesday, you will be missed.
Stu.
One of the best programs I have viewed in a little while, very interesting episodes, and I’m looking forward to the others, only seen the first two for now. So many of us do think we know quite abit of history, yet we still learn. I thought the marathon was one runner in ancient Greece that took a message 26 miles, and finally I find out, it were the citizens army of Athens, with Plataea aiding, they had defeated the Persians, who in turn set sail to conquer Athens, and so the army had to run the 26 miles back to Athens, and in turn the Persians did a runner, or turned and sailed away.
Just a little reminder here of that just gone summer, do you remember it? no? nor do I! mind you, we had a superb week in March, in-fact I did this song about sarcoidosis back then by the river Wharfe, if you viewed it then do you remember? no? oh those were the days of March 2012!
This must be the only song in the world about sarcoidosis, it would be great if we got all the sarcoid affected folks to have a listen, affected means as said, you don’t need it to be involved…?
Ah, yes, that reminder of the great British summertime, a raincoat, a camera, erm…
That video is pretty much near to where im pointing in this video, during the floods!
Jeez, my hair, I still have it, but its in a washing detergent box! in-case you missed the event you best check some self clipper attacking here, and just below is the result, hmmm, to keep or not to weep, that is my question, ah yes…
Space…
Space, just so you can not view it straight away…
More space…
Space is so required, one turn of that wheel in the middle of your mouse…
Almost there…
And here you see it…
Thats about a full turn of that mouse wheel!
No, that were about 3/4…
This is about 7/8…
And so…
The hair…
How to jump from the edge of space. Wow, just watched that jump from the edge of space, Felix you top dude, when he were stood on the edge of the capsule I almost got motion sickness watching it!!! Top marks, brilliant, and how insane some folks are eh.
Watch the jump here.
As you may well have viewed, earlier in the week I had an interview at Sainsburys in Otley, 24 hours per week, part time and permanent. Im certainly sure I looked the part, much appreciated to Remploy for helping me with some advice. The interview seemed to go OK, mentioned I could cycle there and get showered etc, I could get a road bike on the cycle to work scheme, it sounded really good actually, until it was mentioned the position is temporarily until 5th January 2013.
I had spent six days really building myself up for this interview with the knowledge that im good at interviews and that im usually successful, the difference is, this was my first interview for employment while having a stupid rare illness in Sarcoidosis, not forgetting its only recently that they told me i have slipped into the one in ten sarcoid sufferers, so, and so as soon as that word of ‘temporarily’ was mentioned I felt like the floor opened a little, my fault as maybe I should have asked before we applied for it.
Now, it were also mentioned that other positions might occur after 5th January but these would only be 12 – 16? hours per week, I have done all my sums, I need a permanent position of over 16 – 20 hours per week before December or over 30 hours after December, one of the reasons I need a permanent position is simply that I don’t really need to be having to worry that the temp position is going to come to an end and have to be constantly searching for another job, I need a job where I can start and settle the best possible, It wont be good for me possibly having to jump from one position to another, I might think I can handle that but my sarcoid will think otherwise, difficult to explain, all involved seemed really helpful and understanding, I do want to work but with minimal ‘hassle’ if that makes sense?
Onward, sideways, zig-zagging but still that direction is up and to keep on searching.
It had to happen, I decided not to get my hair cut after I started being ill, and so times move and change, of course I need an appropriate job and so, here I will show you just how easy it is to cut your own hair made easy…
As you can view, a look here of trying to copy Einstein, but, he had already been there! once those clippers do come out…
You can have a little bit of a play, a good old comb-over, erm, I thought about going out with it and then again…
Such a result onto the towel, I mean, it felt so much lighter, oh should I say emptier! hmmm…
Yes you guessed it, who is this superbly good looking fella? what a massive difference clippers to the hair can do, this could well have cost £10-£20 in the hair-dresser/barbers, but as you can see, clippers work just fine!
On a final note it has been asked about something else, and the answer is no I did not touch them, for further viewing you will need to hold your breath as this is unbelievably not Brazilian and definitely not Hollywood, right, hold your breath…!
Had my influenza vaccination this Friday morning, well its only something small but feeling like Iv now got a mild bout of ‘man-flu’ though I also asked to be weighed, 72kg, hmmm, looking OK but im now down from 79kg of a couple of months ago, it could be due to my prednisolone reduction which is now at 10mg/day, and from a maximum of 40mg/day for a couple of months in the spring, thing is, I never got the huge dreaded pred moon face or actually got huge?
I must advise that anyone with a compromised or daft immune system should really have a flu jab, might leave you rough for a little while but in the long run it should help protect you through those long dark autumn winter months, brrr…
And so the decision was made, to cut my own hair as easy as possible, cheap as possible, as quick as possible, yes this is the one you have all been waiting for; how to cut your own hair real easy and to look good for an interview.
After nearly deleting ‘the thing’ page I decided not to, it might still offer folks some kind of sarcoidosis in-sight? Its almost two years since being diagnosed as a sarcoid, in that time I kept reasonably positive, yes sometimes I can write rubbish and harp on but its good for the soul? I was so hoping that in those two years I would have been one of the (95%ish) of sarcoids and it leave me, it hasn’t, its active and, well its all guess work now, about 12-ish in the whole Bradford district, so say the consultants.
It used to bother me when folks say I should be thankful its not cancer, sarcoid is a relative to cancer, it needs the same type of treatments, it is degenerative, its active and really bothers my eyes and lungs, and my mind, oh but that’s normal! the only difference in sarcoidosis and cancer are the names, that is it, illness is not a competition.
Im still taking on the Atos assessment that I failed on 2nd June 2011, the Employment and Support Allowance ‘system’ is wrong and corrupt, with my case now at the higher courts in London, but, my determination to get a job (probably through Leeds Remploy) is now a priority, I then need a car to carry out my gig/band direction. My third passion of cycling is much harder than I let on, yes third passion cycling!
Onward, sideways, zigzagging, but like the morning sun, heading in the right direction of upwards.
Do you ever get home from shopping, and sometimes you forget to check all the food in-store before placing it in your basket or trolley? You guessed it, I came to making a delightful corn beef hash (instructions eventually!) but at this important time to open the tin, arrggghhhh,
The key was missing, but not to panic, this is how I overcame a potential hair raising problem.
Now, very calmly get your tools out, the mechanical hand tools obviously that’s what I meant silly! using long nosed pliers carefully grab that bit of metal where the key should have been, and then gently wind it around the tin.
Once you have got back to the start then give the pliers a good pulling to get them out of the tangled spring loaded metal strip, oh, you see the metal was wrapped really tight, so actually try removing them carefully or you will cut your fingers.
Upon successfully getting the long nosed pliers out give yourselves a nice pat on the back, and then return to cooking the hash, I can smell it from here, hmmm…
