Stay strong Laura!!!
It's strange your fighting a rare form of staph and I'm fighting staph (first was staph A second was staph with a C after it). We think my staph issue is because it's sitting in my dead bone, but can't confirm till I get a bone aspiration of my dead ankle bone if I can get someone to man up and do it.
I didn't know or think to know bones could even die; dr comes in and says connective tissue diseases do that and I'm like "hmm well never heard of it before and I'm big in the EDS community chatter" so I asked dr Francomano who said she's never seen it before (makes me feel validated on that front). My mast cell doc has seen it in MCAS patients so it's either MCAS or long term steroids or both causing it for me, but I vote for my MCAS cause it's evil and I had an infection in that ankle which would make the mast cells more unhappy with it.
Oh the joys of our diseases.
And since I'm home from a week inpatient, one more cardiac arrest and more anaphylaxis attacks then I can begin to even want to count (and my brother came via ambulance to the hospital day and hour of my picc change with suspected MI at age 20 thank god it wasn't but he does have inflammation of the sack around his heart causing abnormal EKGs and pain in his left arm from a bad subluxation or such that hit a nerve quite literally) my mother decided today to choke on her lunch alone in the living room and passed out and somehow resolved her own choking which has us all befuddled.
When it rains it pours; I live in florida so it usually just rains briefly and stops in like 20min; I didn't know it was supposed to go on for days lol. :/
But yes stay strong!
I expect that head of yours to close up in the next decade and would so love to hear it do so like in the next few months lol.
You write very well, Laura. I hope you are keeping a journal that can someday become a book with a happy ending. Sending love and hope..