02-10-2017, 07:16 PM
Thanks, Charon. I gotta be honest, I've been creeping without an account for a while, and I think you're awesome. I saw you telling someone off in a vendor's forum and you said something along the lines of, "the people here are my family and my guests. Do not be rude to them." I was like, "oh, yep, okay. I'm in."
You're totally right about going to see a neurosurgeon, though. But the guy that initially suggested surgery to me was no longer a practicing surgeon- he had pretty much retired, but was seeing patients in place of my regular doctor, who'd had a sudden heart attack. When I went in for the appointment, I wasn't even aware I would be seeing someone different- so I don't know if I went seeking a neurosurgeon's opinion. From there, I saw a regular neurologist, who then referred me to my eventual surgeon. The reason I had bad effects wasn't something I think they could have foreseen- at least, no doctor or patient I've talked to can tell me what might indicate a predilection for my comorbidities in preoperative patients, it's just one of those "slice them open and see" kind of things. I don't blame my surgeon- just myself. I didn't know, at the time, that it was my job to do lots of research about my diagnosis and possible treatments- I thought, "okay, these people went to medical school, I did not, I trust their opinions," and I made what felt like but actually was not an informed decision. I know better now- that whole hindsight thing.
I so appreciate you for sharing that you manage forums for other chronically ill patients (I hear them- us- referred to a lot as "spoonies", but I don't know how I feel about that) and that life can be meaningful even when you're sick. Made me a little emotional, truthfully.
Uh, so, I know that the 50 initial posts are meant as more of a "prove yourself/get to know us" sort of period before you start asking questions, but I am BRAND NEW to iop- never done it ever- and I have two questions that I would kind of like answered now, if that's not out of line.
What can I do, if anything, to protect and help YOU guys? Like I said, I'm a n00b, and I'm worried I won't be an asset or- worse- that I'll be a problem. I have scoured the rules, and will make sure to double-check them before I make a new post, but... is there anything I might need to know that I risk passing over?
Also, uh, you guys sort of have your own language- and I get why! And I support it! And some of it I've managed to sort of figure out, but I was wondering if there was like some kind of... dictionary I could use, or something? Like, is there a good website where I can look up some of the abbreviations that you guys are using, or what the common nomenclature is for brand names? Because that whole 'not-googleable' thing makes total sense to me, but also has left me a little baffled during some of my creeping.
You're totally right about going to see a neurosurgeon, though. But the guy that initially suggested surgery to me was no longer a practicing surgeon- he had pretty much retired, but was seeing patients in place of my regular doctor, who'd had a sudden heart attack. When I went in for the appointment, I wasn't even aware I would be seeing someone different- so I don't know if I went seeking a neurosurgeon's opinion. From there, I saw a regular neurologist, who then referred me to my eventual surgeon. The reason I had bad effects wasn't something I think they could have foreseen- at least, no doctor or patient I've talked to can tell me what might indicate a predilection for my comorbidities in preoperative patients, it's just one of those "slice them open and see" kind of things. I don't blame my surgeon- just myself. I didn't know, at the time, that it was my job to do lots of research about my diagnosis and possible treatments- I thought, "okay, these people went to medical school, I did not, I trust their opinions," and I made what felt like but actually was not an informed decision. I know better now- that whole hindsight thing.
I so appreciate you for sharing that you manage forums for other chronically ill patients (I hear them- us- referred to a lot as "spoonies", but I don't know how I feel about that) and that life can be meaningful even when you're sick. Made me a little emotional, truthfully.
Uh, so, I know that the 50 initial posts are meant as more of a "prove yourself/get to know us" sort of period before you start asking questions, but I am BRAND NEW to iop- never done it ever- and I have two questions that I would kind of like answered now, if that's not out of line.
What can I do, if anything, to protect and help YOU guys? Like I said, I'm a n00b, and I'm worried I won't be an asset or- worse- that I'll be a problem. I have scoured the rules, and will make sure to double-check them before I make a new post, but... is there anything I might need to know that I risk passing over?
Also, uh, you guys sort of have your own language- and I get why! And I support it! And some of it I've managed to sort of figure out, but I was wondering if there was like some kind of... dictionary I could use, or something? Like, is there a good website where I can look up some of the abbreviations that you guys are using, or what the common nomenclature is for brand names? Because that whole 'not-googleable' thing makes total sense to me, but also has left me a little baffled during some of my creeping.