Living with Sarcoidosis

On xmas eve last year i was rushed into hospital with pneumonia and spent a grueling week there. My kids nearly had beans on toast for xmas dinner because my husband was a wreck with worry. I never really recovered and when having a follow up chest x ray there were a number of disturbing lumps present which led to a ct scan and then a lung biopsy. This showed the sarcoidosis it was a harrowing few months wondering if i had lung cancer at 33 years old. Any way due to my lung function being poor i commenced a high dose of steroids to try prevent scarring of the lungs. I have been on the steroids 4 months now and my lung function has improved. I am glad to say that i can now wean down from the steroids because some days I wondered if the symptoms from the steroids were actually worse than the disease. I put on 2 stone and got classic moon face which was so bad that people did not recognise me. I found this the hardest to cope with. I would look in the mirror and wonder who was staring back. I also got odema which would come on during the day and then I would spend half the night peeing it all back out again. Up to 8-10 times a night on the loo. fortunately I am now weaning down and hope to be off them by xmas. I am hoping we have a better year next year because this year has really been a test. My lovely husband has been so patient and supportive, I would never have got through it without him. I have had awful mood swings and no sex drive due to body dysmorphia but he has stood by me every step.