Thats a good cartoon.
[and as this is a bit of a pour your heart out thread........]
I know a number of fellow patients, with my disease, who can appear perfectly normal, then its like they've fallen off a cliff.
And a lot of them complain of family members not getting it.
Even Senior Nurses with it, complain about their husbands not understanding, just how ill, and utterly exhausted they feel, or when the brain fog is so bad, they cant do anything, or concentrate on anything, or their memory is like a sieve. All very common symptoms. Zombified I call it. Struggling.
So in our cases, People actually do treat serious physical illness, like it doesnt exist. And the healthcare professionals are some of the guiltiest parties. Its soul destroying when the very specialists whom are supposed to be helping you, show a complete lack of acknowledgement.
[A pulmonary specialist is not a sarcoid specialist, and if the tumours, or granulomas are in your lungs, you go see the pulmonary guy, yet theres over a 70% chance they are in other organs. Ive met people, where it spread to their heart and they died. Or their brain, neurosarc and they went blind.]
And the conclusions they draw, based upon the way they assess you, are completely ridiculous. You wouldnt believe how its run.
[For instance, if you are diagnosed with pulmonary Sarcoidosis, they tell you that the majority of people get better within months or years, and then a small percentage get the chronic condition. And that your pulmonary physician will monitor you for a year. Now when I was first diagnosed, I read of a load of people, everyone basically, with the disease, on the Sarcoid website, saying, at the end of the year they felt no better at all, and the physician basically says, right youre cured goodbye!
To your complete shock.
I couldnt believe that, but mine did exactly the same thing with me. Yet when you look at the european clinical studies, no-one gets better. If you meet and talk to people with the rare disease no-one is better than when they first got it. NO-ONE. And yet, the NHS show 90% of them as being cured, when they are nothing of the sort. It must skew the figures massively. Completely ridiculous. Most patients, by now totally fed up, then go to the only Sarcoid specialist hospital in the country, the Royal Brompton, in South Kensington, to see the leading expert Professor wells and his registrars. And they understand the disease in-numerably better than the pulmonary specialists all over the country. So at least you get some empathy there. Feel better understood. And that kind of boost is better than any medicine. Acknowledgement, of your condition. The system is designed to get you in and kick you out as quickly as possible, and label you as cured, when nobody is. It is incurable. All they can do is give you steroids, which suppress your immune system to the extent, that the inflammation around the tumours in your lungs goes down enough for you to be able to breath. It dosnt do anything to cure the tumours themselves. Its a complete joke. And people are left depressed and in limbo. You type Sarcoidosis into google and it'll tell you large numbers of people are cured. Its a lie based on false assessments!
Just be glad youve got your health, cause when that goes everything goes with it. Your house, business, woman etc.....Your just stuck in Limbo with no answers. And the very physicians assigned to help you, are the ones who put the boot in. So you just give up completely on your doctors.
Rant over. Glad I got that off my chest, [pun intended!]
Without the handful of drugs i take every day, I'd be off to A&E a lot more.
All I wanna do now is travel a bit more while I still can. And hope to hell my 76 year old ill parents dont get much worse, or I'll really be screwed trying to look after them as well.
Cest La Vie!
