Yesterday the professor started some treatment on my feet. Just a little at a time otherwise I wouldn’t be able to walk. We think it might be the Azathioprine as I take 50mg in the morning and 50mg at night. So, he is going to communicate with my other consultants and try find what might be the best direction for me. Mind you, my rug looks a mess!
So, this evening it is time to have the appointment with a top dermatologist. Reason being, this time, it’s my feet. As can be seen in the following photo’s, they are being attacked. Walking can be a right problem, jeez!
Well, I do enjoy my doctor, we have a laugh. It seem’s he is possibly going to try and get other medics involved, even private one’s? For nine out of 10 sarcoids this systematic, frustrating, debilitating – and super important, depressing disease, well, for nine out of 10 it is self limiting and will leave on it’s own without any medication. For the rest of us – one in 10, about one in 100,000 folks (in the UK), this slowly get’s worse.
Research will not be at the top of any government and pharmaceutical company’s list as the return’s would not be worth it. So they carry on playing with us. One thing, so many tell us to keep our chin up, stay positive, be optimistic, etc. etc. Since June 2010 I have tried, it’s fucking difficult.
Slowly, but surely, it sticks nails into us…
So, after four years of being very lucky to get where I live, due to being ill – Sarcoidosis. It becomes a lot clearer why various areas within this flat appeared to be simply painted over. Numerous times I have contacted Home Group (my housing association) and still nothing. I have now sent the following photos to them, also the links to the videos. Yes some folks are obviously saying I am making a mistake, but if the housing association – Home Group, wont or indeed can’t fix this leak then I must try move on ASAP…
In October 2013 the Sarcoid started to attack me quite a lot, it then never left me. A few weeks ago it more than started again, but this time I think I know why, or one of the reasons – the damp within my home. Ok, winter can be bad for a healthy person’s lungs, but for those with chronic sarcoidosis – and other conditions that can affect the respiratory system, damp can be dreadful. Stale air can simply take our breath away, suffocating without a bag over my head?
And a decision is being made, because I have a spare room then I get my benefits cut by 14% through the infamous ‘bedroom tax,’ that is a lot from £72.40 per week. I am not a benefits scrounger, my last job was through Leeds Remploy, I know I can and want to work but it has to be appropriate for me. It is being a very bumpy time for me. I have asked Ssafa if they can again help, I never really wanted to ask this fantastic charity but I’m cornered.
In order, this is what is happening. A huge leak from the rainwater drain.
This causes the dripping inside the wall cavity – Chinese torture one might say!?
Then starting in the second bedroom.
And moved into the living room.
All I ask is for my life to be a little level, as my mind is so full I’m struggling to take more.
So, we know? the Prednisolone isn’t really working, got as low as 7.5mg/day but last week sent it to 10mg/day. One of the reasons you can see. My ankles started the early signs as to what happened four years ago when I started getting ill. The dots grow, then they seem to fuse, the ankles swell hugely and the pain is phenomenal. No known cure for sarcoidosis. For nine out of 10 sufferers it leaves them without treatment, and then they are us few left…
Well, to be honest the benefit’s have been quite helpful, it’s my company that seem to be dragging their feet. All I need is the SSP1, original sick notes from April 2014 (as that is when the SSP would have run out), and July’s pay slip, as the system will not allow me to print it out.
So, I need EAS sorting before I can get help with my rent and council tax.
Jeez, to be fit and healthy-ish…
And so a phone call from the docs. My main consultant has told him to tell me not to alter any of the meds and to get in for more bloods test’s. Anyways, they are trying something new with my foot…
This is one of the reasons I can get so annoyed with my sarcoidosis, one minute my eyes are erm – ok, the next they are fucked… Arrggghhh. They can feel like what a pin cushion probably feels like.
And, this week we have lowered the Prednisolone 33%, from 15 to 10mg/day, a little steep as at the moment my body is screaming that the turkey is too cold…
I've dropped my #prednisolone by 33%, from 15 to 10mg/day. Let's see if it goes ok now the #azathioprine is 100mg/day. Shit #sarcoidosis
— Stuart Briggs (@Stuart_Briggs) May 3, 2014
Wednesday is a doc’s appointment. Just need to run through some stuff. Been on 100mg/day azathioprine for almost two months while we dropped the prednisolone from 20 to 15mg/day start of April. Body can seem to go up and down, peaks and troughs, same with the mind, but the fluoxetine is trying to control that? Chest pains can happen at night and certainly the lower back (kidneys?) can give me some shit…
, read the Blues in Britain magazine review or listen to my BCB Radio interview.