Just met a real living Weggie. It was Weggies Unite for real. Phil, it was great meeting you in person and sharing horror stories and laughs at the same time.
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Weggies Unite atop Marmot Basin - Nov 10, 2010
Me (big phat pred momma) and Phil (handsome young Weg dude) |
The flare is doing it's thing. I feel like there's a bar fight going on inside my body. The pred alone is helping with the inflammation and the crazy pain that goes with it, but there's definitely bad things going on inside. I'm spitting up granulomas from my sinuses. I'm having a hard time articulating my words - this happened the last two days before diagnosis the first time - not sure if it's physiological or neurological but my tongue doesn't seem to be working right inside my mouth. My eyes (particularly my right eye - which is where the action seems to be this time - right side) are quite sore and vision is decreasing and spots and floaters are increasing. Joints are quite sore, I hobble around like an 80 year old in the morning. Hearing is going very fast in my left ear (the epicentre of all the problems the first time) Breathing sucks. Energy level is at about 20 out of 100. My skin looks like 'The Man Who Fell to Earth' (remember Bowie?)
My local GP, Dr. Wilson (I will name the awesome people on here - so hope you don't mind doc) is amazing. I love her. She just got thrown into the Wegs fire a week before I landed in hospital, so I totally respect her holding off giving me the go ahead with the toxic crazy treatment that goes with WG, she's waiting for the go ahead from the specialist.
Has anyone heard of plasmapheresis for treatment of this disease? Would love to hear if you have any insight into it. Just stumbled into the idea yesterday (although apparently the my 'team' were discussing it as a treatment option when I got diagnosed, but that was when I was completely out of it, and don't remember any of that talk.) Also curious if any other WG patients had elevated liver enzymes before diagnosis. That's been the hick up on actually treating the problem. Also any comments about cytox vs rtx?
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