I’ve been holding off with a post like this, but I can’t anymore… If you can’t handle illness stuff or you are too close to this please stop reading this post.
I was told I might have sarcoidosis. I’m very very ill and barely holding it together. It’s unbelievably tough on every level and it’s very scary at times as I have a lot of trouble breathing. Plus pain, a cold, joint pain and the most unbelievably fatigue.
I’m due to go back to POW hospital this week and I’ll have to try to bring forward my appointment as I don’t want to get to emergency again. I often feel on the edge of that again and again. I really hope to get treatment soon.
It’s been a very stressful time as I feel very alone, very ill, quite scared and cannot earn any money. Craig and my mother help me out and support me, I couldn’t do without it. Some friends also send me messages and they cheer me up a lot.
Sarcoidosis is an autoimmune illness in which the body attacks itself. Unfortunately I already have 3-4 other autoimmune illnesses so getting this one too would not be good. It started on my legs where I have large red bumps which are an autoimmune reaction itself. They are very painful to the point of not being able to walk and come with severe fatigue and fever. I now have a lung illness of some sort which is more serious and most people with sarco have this. I’m going to have extra tests done… I hate the idea of getting one more illness. Breathing is very difficult and sometimes painful and I get a horrible and exhausting dry hacking cough.
If you want to read a bit more on it here’s an easily digestable article on it.. If you want official info go here and here.
I should take solace that most people have a mild form and often recover without being diagnosed properly or their lungs getting bad. It’s unknown how the course of it goes, I could be cured or I could have a hard time managing it. I’ll have to see how it goes, I’m hoping it’ll be manageable, though the drugs are very rough too.
It’s a very tough time for me and Craig… any supporting words welcome as we are trying to cope with it all… thanks! My goal right now is not to be admitted into hospital and cope until I get on steroids. Please cheer for me…
HOPE I CAN WRITE ABOUT MUCH MORE CHEERFUL STUFF SOOOOOOON!!!!
(artwork: Winter flight by Igor Laptev)
September 10 update:
My lung specialist says I probably don’t have sarco, which is excellent!! I had a new comprehensive breath test to see what else is happening in my lungs. My x-ray and CT scan are clear and my coughing is getting better. My energy fluctuates and I still get ill unless I’m resting (I’m not very good at this), but I’m definitely improving.
I was told that I definitely have hyperreactive airways and had very bad bronchitis, and I was given a new inhalable anti-inflammatory at double dose. I’m now definitely hopeful 😀