choosing a battle

Discussions of issues related to living with cavernous angiomas

choosing a battle

Postby jejohnson » Sun Aug 24, 2014 6:56 am

well, after being convinced by a surgeon in milan that the time for surgery had arrived and spending months facing down those demons, he changed his mind, due to quality of life issues. i didn't tell him i told you so.

but it has been a rough year since the last bleed nov 2013.

if i may, i'd like to ask anyone who suffers an angioma, be it their own or a loved one's, to please take a look at this when you can and share it.

if it was for me alone, i wouldn't ask. but really, after 2 bleeds in the last 4yrs but none before that since the first bleed 22yrs ago (always from the same angioma), and a notable drop in the level of that infamous quality of life this time around (among other things, no more driving, no swimming, typing one-handed... ugh) i'm not asking as much for me as i am for my 6yr old boy. or at least, for me to feel like i'm doing something that will remain with him long after i'm gone... since all of a sudden i find it damn near impossible just tossing a baseball with him these days. luckily i still have my vocal chords and can blow a harmonica controlling it with the one good hand and letting the useless one just hang on for the ride.

much thanks for your patience and consideration. like i told some fellow cavernoniani (italian slang for folks with cavernous angioma) here in italy, if i pull this thing off, i'll first be dedicating it to my son and family, but after that i'll be dedicating it to everyone who has to go through life carrying these bittersweet berries in our heads.
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