Every time I think, hey I feel fine, I’ll get back to work, I’ll, I’ll, oh damn, another infection… third one this year (the other two were Staph.. a new adventure)… I say, its ok, you are ancient in terms of primary immune deficiencies… 49 is more like 85 for you so you ARE doing great… and I say, you are so lucky, look how long you made it so far and if you were in a country without health care or antibiotics you’d be long gone… and I say get out there, take risks, not too big, but enough to still ‘have a life’… don’t let fear rule, sure bugs may get you, they may even kill you, they will certainly send you another round with antibiotics and sooner or later, yes, that will take you closer to more rounds with cancer but really the biggest danger is none of these, it is ‘giving up’, it is ‘quitting life’ and all its interactions, it is losing investment in personhood.,,, and so… another day, another adventure, another chuckle, maybe a cry and that too is another ticket spent in the amusement park of life… bring it on… life is for living.

Donna Williams
http://www.donnawilliams.net

UPDATE: turned out to be ‘just fungal’… guess that’s a muted hooray…. don’t have to do another antibiotic yet :-)… on the other hand its part and parcel of the plethora of fungal infections that those with PID live with… in my case subhorroeic dermatitis of the scalp and ear canals, fungal sinus and lung infections and of course the old favorite, oral thrush which causes me asthma for good measure… or challenge, or entertainment… writer’s fodder at least! Ode to a fungi???

biopsy on Monday, got another leg lesion… doc isn’t sure, might be Bowen’s Syndrome… a syndrome of in-situ squamous cell carcinoma usually on the lower legs, common in immune deficient folk… found early no biggie as it can take weeks… but ignored these can suddenly come out of dormancy and go into lymph… that’s the road to shit street so I don’t want to go there… a quick freeze will fix the bugger but we’ll biopsy it so if any of its friends show up we know what gang they represent. Makes me a little worries, because we all have squamous cells inside our bodies too… so if someone like me has them get funky and misbehave I hope the ones inside don’t do so! I can’t exactly stick my head up my butt to check!