I noticed this advertisement on the internet the other day, found it quite amusing, I guess gay men are not allowed to purchase them?!
And so I did not order them, oh, but I am straight, for now ha!
Living with sarcoidosis, the good, the bad, and lots of in between.
You know the old tune; ‘one of these days they gonna walk all over you’ erm, I forget who it were though? mind you, along with my colourful affray of little cotton socks, well they kind of fit with my superb colour schemes…
To be honest I think they look brilliant, its just to carry some of the true senses through surely! there again, on the inside my feet are not healing just like they should, even with the comfy Doc Martens, its a sarcoid thing, but I have the comfiest pads possible, soon to pick up the prescription cream too…
We must remember that exercising sarcoidosis – within reason – is a very good positive, since getting into work again I need to walk about 50 minutes per day, yes its hard on the feet but we getting that sorted, another benefit is that it helps control the prednisolone weight, as does a decent diet!
I guess they must even be hardly noticed while a toe job happened, hmmm, erm, well a job to clean between the toes – yummy!
A few times I woke during the night and felt like something was wrong, I told my main sarcoid consultant and he referred me to the sleep clinic, in years gone by patients had to spend nights in hospital testing for sleep problems, this new piece of kit that I had to wear is called an ARES machine, and yes you must be careful with the spelling! and so I had to spend a few nights in this head gear.
Apparently it test’s for lots of potential problems but certainly its not a dream catcher! I reckon it is better than spending nights in hospital being tested, although the machine does talk to you during the night “You may now adjust the unicorn on your forehead” and it repeats until you do, it says other things but to be honest I can not remember. It has three sensors on the forehead and a nasal cannula which also acts as a sensor. Awaiting results, im sure it will be fine.
My eyes are for scanning today, should be ok, though I am going to ask about reactor lenses, its just that the sandpaper feeling of eyelids – especially in sunlight – needs to be sorted, they can also get sore in the office, so its just more advice on how best to work around these issues, then I have the docs this pm, iv started with sores on the ball of my right foot, and a little on my left, very painful, they should have gone by now, I do wear Doc Martens as much as possible, they are superbly comfortable and so I just need some meds for my feet.
So this is where today and my appointment at the Leeds dental institute brought me; We’re not doing the op, I thought it were just minor, turns out it would have been much more!? its too dangerous, so we will see other options but they would also be reluctant to either bridge or insert a post, both can very easily cause infection.
If they now pull the tooth then the bone wont fill with blood and heal properly, that then spreads which can cause my face to collapse, that’s due to the meds and sarcoid, If they take me off the pred my lungs and hilar lymph nodes fill up in no time so we keeping me on 10mg prednisolone until Jan 14th and then see? its not just the pred, its also the alendronic acid and the phosphors? that are now in my body. Its not a problem, we can take the tooth below the gum and then sort it, im more bothered about a denture flying out when I get performing again!
And so to keep some colour on my feet!
And so at very late notice I thankfully decided to go to Jacob’s 18th party, a friend Elvis (he used to have the hair and stuff!) went with me as he knew I can get quite anxious in the presence of my ex wife. So I have decided to keep this post short rather than my typical hate the system crap, well, I am disappointed in the system as regards illness and dads rights.
So many folks have mentioned why have I never hated the ex wife etc. yeah over the years it (the system) has contributed to making me ill, but to be straight to the point, Iv never hated her, very annoyed at how it ended but…
I needed to overcome this, the courage to go shake her hand was immense, the following hug was more, I think an understanding is there, I feel released, I hope to live a long time and try to ignore sarcoid as much as possible, not only that, but knowing I don’t hate the other person that helped create my two fantastic sons is something I feel very good about, too many negatives are on this planet.
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…
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!!!
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?