More good news, my sarcoid lungs are showing signs of improvement! Iv not wrote much as im happy getting into the swing of working again, Im sure – or something like that, that being positive and given a chance to work in an appropriate environment surely can help, its something I will be writing a lot on in the near future, just another episode to, hmmm, life, my life! A few more appointments this and next week, and hoping for none over a little while, yeay…
Posted in My news
The first few days in my new job were good, very nervous on the first day, in-fact, when I got there and were being introduced to the sections and teams I burst into a daft sarcoid sweat, for those who understand its so annoying and embarrassing.
As I hoped for, come the second day the sweats had calmed lots, and I finally started some of the work by myself, and this second day ended with a team outing in Leeds, very good night indeed, I had to leave for the train at 10:15pm yet the one night you wanted the trains to be on time, then they weren’t, I needed to get to Ilkley, hmmm, I ended up getting the Skipton train and got off at Shipley, this was a plan hoping that the Bradford to Ilkley train still had to run, yes, what a great plan, back to Ilkley for 11:15 and a taxi on home.
The third day I felt much more comfortable, the team outing (Five female and four male) was a brilliant ice breaker! thankfully of my time leaving as some didn’t get to bed until 1:30 and 4:00am!
Yes im enjoying being in work again, sarcoids can work, im in the one in ten of sarcoids and will still push on, its 40 hours per week and so its vital to rest lots too. One thing that happened on Friday, my left eye played up somewhat, I had got some new drops and plus im at the eye specialist on 14th November, I will ask what else we can do? though I will be getting some reactor lenses glasses, although its a nice office working environment I still need to keep elements out of my eyes.
Onwards and upwards still!!!
Posted in My news
Tagged Advice, Sarcoid
Its finally here, I get up in the morning to go to work, what a two and years its been, still not where I would like to be but a job is certainly a brilliant step in the right direction. Remploy and my JSA disability advisor have been great, too much to right at the moment but it will make a very worthy blog about working and being a sarcoid, a rare one in ten sarcoid at that.
One of the first things I needed to do was to make sure I have some reassuring help to keep at work; meds in-case I forget to take them at home, box of tissues, packet of wetwipes for if I need to freshen up after a sarcoid smelly sweat attack, heel supports for my ankles, nail file – I know but sometimes my nails go stupidly brittle and simply snap off, miniature mouthwash for that metallic taste I can get, and a miniature lynx for the future, erm, if I do think of anything else then I will get.
My advisor has been so helpful, here I have been able to get geared up for an office environment, all new direction for me, thing is, I do hope the shirts are appropriate, trousers are great but I wanted the shirts to allow me to some degree be me, oh, erm, maybe not as trendy as I think, or maybe I will make the clothing appear un-trendy ha… My intention is to leave one or two shirts at work, maybe T-shirts too?
The all important ironing, im not actually too bad with an iron, although seven shirts took me close on one hour, but saying that I was cooking as well, talk about multi-tasking, the future wife will love it! Well I must crack on and get my sandwiches put up, and stop panicking, and set my alarm, was I even got an alarm today as I don’t trust my phone to do the business every day, now what else?
And what do we have here, yes they are advised as being some of the warmest jackets around, sarcoidosis is a funny one, I can even sweat something silly when im actually cold.
Czech military coats have a fine lining and coller, both can also be removed individually, so it could well be an all year round jacket, I felt the cold last year, and I should not this year, it could also be my new working dress-code with my new job, ha…
More clothings are still being looked into, especially 100% cotton long sleeve shirts and also trousers, try best possible to keep those synthetics off of my skin?
Getting employment with sarcoidosis, yes absolutely we can! the journey has been difficult and a long two and a half years, the challenge is huge, after being told I had dropped into the one in 10 of sarcoids my heart fell out with me, but to keep on pushing. I have a huge thanks to give Sue and also Sam, you see sometimes folks can and do help.
Working and having my sarcoid is going to be a massive challenge, im up for it… No stopping this ‘geezer’ im certainly not intending on parking my body and getting all washed up, not a chance, will keep on pushing sarcoid in all directions.
With support we can re-direct the force of nature, much can be washed away but like that there greenery, it can always grow back.
More on this later as its worthy of a longer article.
Well I had to get new socks, I have sarcoid of the skin so im trying to get as near as possible to 100% natural fabrics, mainly through Amazon vouchers, will do an in-depth post, article about that soon!
86% cotton, its the most I could get, got 5pr of stars and 5pr of Aztec design… Ah, purple is the international colour of equality – not many folks know that, its also the sarcoid awareness colour – not many folks know that, it was also a favourite colour of Jimi’s – not many folks know that, its also my second favourite colour, behind black – not many folks know that, so I guess not many folks erm, know.
These little cotton socks should provide superb comfort when I fully decide to break my ‘Doc Martens’ in, shoes are just about there!
Posted in My news
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.
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.
Posted in My news
Tagged Photos, Sarcoid
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…
Posted in Blog, My news
So, we finally came to a decision, the tendinitis of my ankles is more than likely caused by the sarcoidosis, and as I have been on upto 40mg of Prednisolone per day for approaching two years its time to try get off it, well, reduce it and see what happens?
OK the quality is not brilliant from my mobile, I do have a decent camera but keep forgetting! We know that reducing the Pred will cause some problems to raise an ugly head that it has been masking, so lets see how the needles help with my sarcoid ankles.
What I will say here, that above needle on the left I certainly felt, but not in the pain as you might expect, it were a very strange yet relaxing sensation that also mildly went up my leg!
I could find it very easy to drift away while having those little needles shoved in me, hmmm, yes I certainly enjoyed them, oh, its mental pain I don’t like, so lets see what happens over the next few weeks.