Hi Frustrated,
so sorry you have to go through all these!!
whenever you cannot breath, try to keep calm. anxiety won't help - on the contrary, it will make breathing even more difficult. Just close your eyes and say (in your mind): "breath. breath, breath". Maybe it seems stupid, but it helped me a lot in the past, when I couldn't stay without oxygen at all and I couldn't breath, even on oxygen, sometimes.
It is good to have oxygen at home - although it is a sign that your condition progresses - it will help you a lot. You will see in time how good it is to have oxygen whenever you need it, without having to go to the hospital.
Regarding the treatment, I would advise you to go back on steroids - yes, sorry!. Try to convince your doctors to give you something like prednisolone - it is better in regards to its effect on internal organs than any chemo drugs, which really destroy everything - and ask for a lower dose, such as 24mg/day. This is in the beginning, until you can function "normally" again. My treatment plan goes like this: 24mg/day one month, 16 mg/day one month, 8 mg/day one month and then a checkup.
Once your condition starts to improve and you can move around without oxygen (sarcoidosis symptoms will get better under steroids - and hopefully, soon), go and see a naturalist or a homeopath. However, make sure that the professional you are going to see is good and has some experience in treating sarcoidosis. If the wrong treatment is given, it will be completely ineffective.
I'm also on steroids now, and I'm sheduled to see my homeopath next week, on 09/11 - I can't wait. However, I must admit that my condition has slighly improved under steroids - which is also good for homeopathy, as it will be even more effective if the disease is not too advanced.
I've read a lot about homeopathy online and there are some studies, which confirm that sarcoidosis can be treated with homeopathic remedies. Eventually, your naturalist or homeopath will be able to replace the steroid drug you take, as your allopathic doctor will be lowering the dose slowly, with natural remedies that address sarcoidosis and its symptoms, including inflammation that facilitates scar spreading.
A few years ago, I was also unable to do anything without oxygen; even with oxygen, doing simple things was almost impossible (there was a time when opening a yogurt container - the plastic one that even kids can open - was a really challenging task / I just couldn't open it without a big fight!!
. I took steroids and homeopathic remedies. After about one year and a half, my doctor told me that the sarcoidosis had stopped and I we can try to eliminate steroids for good. We did that, and I have been off steroids for four years.
Now, I will repeat the treatment (steroids + homeopathy), and I hope the disease to become dormant again, especially that this time I feel much, much better at the time when problems have started.
what esle can i say? I can't say how sorry I am that you feel so terrible. I know how it is, especially when you don't see it coming!
I hope you'll feel better soon, my dear Frustrated
.
All the best,
Magda