Today I am greeted with “Congratulations!! You diagnosed yourself” – YAY??, not exactly the kind of thing you want to be right about. So today after more Q&A and discussion we are going to run MORE antibody tests as it’s possible I have “overlap” or more than one autoimmune disease and we are going to be transferred to a bigger hospital for an “open” lung biopsy as it is preferred over a bronchoscopy one.
I have my stress test but it’s done with just medication as I can’t tolerate activity long enough to withstand the treadmill.
I notice I’m starting to cough again today without the steroids- I’ll be glad to get back on them. I’m also started to get tired, I haven’t slept well in days. I’ve had several breakdowns. I’ve cried in front of both of my girls – I’m concerned for them.
I’ve also done a lot, and I mean A LOT of searching – SLE, ILD- and I don’t like what I read. And I’m not talking just random Google searches, I’m talking scientific studies. The scarring (fibrosis) in my lungs is irreversible – and apparently somewhat progressive – but how quickly? In the alone hours I am beginning to realize that I am facing my own mortality. I began to think about my husband. All of our married life we have prepared for and talked about, sometimes joked about me living 20-30 years without him given out families histories. The men in his family die in their 60s, my family live well into their 80s/90s for the most part. Now it may end up that he will face retirement without ME. I try not to bring it up but I know it’s a great possibility and we are NOT prepared.
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