"It's called well-compensated cirrhosis." "How well, exactly, will I be compensated?"

I haven't been very successful over the past few months in finding what feels like an appropriate level of disclosure.  I'm sure there's an ideal - the exact amount of information to provide to friends and family without feeling guilty for keeping them in the dark or feeling awkward about what could be a really, really boring overshare.  I don't, however, have any idea what that ideal is.  Instead, I've taken a two-pronged approach of saying absolutely nothing to people I haven't seen recently or on a regular basis while simultaneously keeping the local crew painstakingly updated on minutiae like the down-titrating of my meds and which items on what menus will make my face go all puffy in the morning.  This seems unfair to the former group, and is probably annoying to the latter.  Meanwhile, there is a third unfortunate milieu composed of those who I don't see regularly but happen to run into.  These poor people have a tendency to ask how I've been, not suspecting that that question immediately sets off an internal coinflip between saying "Fine" and unspooling a convoluted story of medical intrigue beginning with "Well, it's been a weird (6,7,8) months." Heads I'm lying, tails I'm boring and kind of inappropriate.  No-win situation.

It's entirely possible that this failure to recognize and consistently utilize the correct amount of disclosure is the internet's fault - after a certain number of years of untagging pictures on Facebook, one's sense of what is public domain kind of steers into "Oh, what the hell" territory.  And honestly?  "Oh, what the hell" kind of seems like the most appropriate attitude to have right now.  So, starting from the beginning and until I get bored or seriously embarrass myself, I'm going to lay out here what's going on with me.


Some of it's going to be mundane - probably the first real post after this intro bad boy is going to just be a nitty-gritty catch-up on the exciting (not very exciting) medical journey that I've been on since last Spring for those who care and haven't been kept in the loop.  I'm also going to be posting details and probably results of a lot of the blood tests and bone and liver imaging that are going to be a regular part of my life for the foreseeable future.  I might even make graphs.

Some of it's going to be completely irrelevant to most of you - I will be posting things like recipes and products I've been using to counteract, avoid, or at least alleviate some of the more immediate and frustrating side effects of the drugs that I'm on.  This is because I read mostly horror stories about them when I did my own "Oh shit what is this gonna put me through" google quest at the outset of this exciting pharmaceutical adventure, and I've done relatively well.  If even one or two people end up here by doing that kind of search and get a more optimistic outlook on what they're up against, or even if they just learn that Guapo Sauce is the serious biz for people who need to restrict their eating to keep prednisone side effects in check, I'll feel like I've done some kind of service.  Which is good, because...

Some of this is going to be crazy self-indulgent - it isn't, ultimately, the diagnosis of autoimmune hepatitis that has had the most profound effect on the way that I've been thinking, and reassessing, and planning to live my life.  Or rather, it's not the effect that it has had on my present circumstances.  Instead, it's been learning, and coming to terms with the fact, that I've had it for somewhere between 10 and 15 years - effectively, the entirety of the portion of my life for which I bear the majority of the responsibility (honestly, before that age, aren't we just basically a combination of our parents' best efforts and our own best efforts to foil them?).  It's allowed me to reframe my assessment of myself and patterns in my own behavior that have played a huge part in my formulation, or at least understanding of, who I am, and frankly I have a few feelings about that.  I promise I will do everything I can to keep my writing through that stuff from getting maudlin.

Some of this, thankfully, is going to be completely unrelated to any of the above - because it's a blog, and no one is paying me to do it or, presumably, anyone else to read it, and sometimes you just have to bring the heat with a youtube video of a cat hiccuping and then farting.  Hopefully that will provide some relief.

Tomorrow: "No, it's autoimmune hepatitis, and I can't pass it on to you no matter how much I want to right now."