RE: question for our support group (, )

[Guest guest]

I know that at this point, only Arne and

have responded to the question, but that’s cool because they

kindasorta took opposing sides. I’m conflicted, actually, seeing

drawbacks (it’s too soon) & benefits (self preservation! as we steel

ourselves for the eventual out-law onslaught). So, here’s the

dealio: both the transplant center *AND* Jim (yeah, he said so to me last

night) feel that yes, we actually ARE talking about recurrent PSC. (I

didn’t even bother to point-counterpoint with Jim. Presently, I’m

so determined it’s fatty liver, I know that’s probably my own

denial at work).

Fortunately, Jim’s attitude is as

good as can be under the circumstances, in other words “whatever it

takes.” (See, I told you that guy’s Superman!) He says

he’ll just deal with whatever he’s faced with whenever he has to,

much as he’d prefer to not (of course). Which is really great in

the scheme of things, because as the person he’s appointed to be his

medical advocate, I take my lead from him, I take my strength from him,

especially now, so that I can be strong for him later down the road… I’m

sure you all get what I’m saying.

So I can see where you’d say to

wait, Arne. But how long might you consider waiting, given our

circumstances and duty to communicate to some very difficult people?

It’s most certainly not those in

this support group, but those Jim & I encounter in our day-to-day, “non-cyber”

lives who aren’t going to “get” it (or a lot of “it”),

who haven’t been in any kind of learning curve, and who, as much as some

of them might insist otherwise, have not been riding this ulcerative colitis

and PSC rollercoaster with Jim & myself since 1984. About those of whom

I speak, assuming they’re truly interested, and have the right motives, then

they’re going to need the education and venue for communication which a

CaringBridge website can help provide (if we’re to keep our sanity intact,

because theoretically, we’d only have to go there and post something

once). From our previous dark time, I’m all for self-preservation.

Thanks for your responses, Arne and

. I welcome any and all other input as well – you all have

valuable things to share.

Love,

Maureen

PS Arne, you and Judy make such a great

couple. And you never cease to amaze me… you hoist your own bales

of hay, you explore Norwegian fjords and Irish horse farms, you craft your own

boats, you canoe lakes and streams, you grow your own vegetables… and it’s

like, in some unexplainable way, in this process, you defeat your own

PSC. What an inspiration you are!

PS , the picture didn’t come

through – do you remember what beach in San Diego? Was it more north, where we

are? Do you remember the name of any towns you visited? There have

been a lot of changes around this place in six years, that’s for

sure. But my goodness, don’t go calling yourself a bad

sister!!! You’re probably anything but!!!

[Guest guest]

I know that at this point, only Arne and

have responded to the question, but that’s cool because they

kindasorta took opposing sides. I’m conflicted, actually, seeing

drawbacks (it’s too soon) & benefits (self preservation! as we steel

ourselves for the eventual out-law onslaught). So, here’s the

dealio: both the transplant center *AND* Jim (yeah, he said so to me last

night) feel that yes, we actually ARE talking about recurrent PSC. (I

didn’t even bother to point-counterpoint with Jim. Presently, I’m

so determined it’s fatty liver, I know that’s probably my own

denial at work).

Fortunately, Jim’s attitude is as

good as can be under the circumstances, in other words “whatever it

takes.” (See, I told you that guy’s Superman!) He says

he’ll just deal with whatever he’s faced with whenever he has to,

much as he’d prefer to not (of course). Which is really great in

the scheme of things, because as the person he’s appointed to be his

medical advocate, I take my lead from him, I take my strength from him,

especially now, so that I can be strong for him later down the road… I’m

sure you all get what I’m saying.

So I can see where you’d say to

wait, Arne. But how long might you consider waiting, given our

circumstances and duty to communicate to some very difficult people?

It’s most certainly not those in

this support group, but those Jim & I encounter in our day-to-day, “non-cyber”

lives who aren’t going to “get” it (or a lot of “it”),

who haven’t been in any kind of learning curve, and who, as much as some

of them might insist otherwise, have not been riding this ulcerative colitis

and PSC rollercoaster with Jim & myself since 1984. About those of whom

I speak, assuming they’re truly interested, and have the right motives, then

they’re going to need the education and venue for communication which a

CaringBridge website can help provide (if we’re to keep our sanity intact,

because theoretically, we’d only have to go there and post something

once). From our previous dark time, I’m all for self-preservation.

Thanks for your responses, Arne and

. I welcome any and all other input as well – you all have

valuable things to share.

Love,

Maureen

PS Arne, you and Judy make such a great

couple. And you never cease to amaze me… you hoist your own bales

of hay, you explore Norwegian fjords and Irish horse farms, you craft your own

boats, you canoe lakes and streams, you grow your own vegetables… and it’s

like, in some unexplainable way, in this process, you defeat your own

PSC. What an inspiration you are!

PS , the picture didn’t come

through – do you remember what beach in San Diego? Was it more north, where we

are? Do you remember the name of any towns you visited? There have

been a lot of changes around this place in six years, that’s for

sure. But my goodness, don’t go calling yourself a bad

sister!!! You’re probably anything but!!!

[Guest guest]

Maureen

All of what you say in your "outlaw" lines have played out in our world too. In the worst of ways. It's ugly beyond explanation. I think one of the things that is hard to learn with family who are so 'close' is they too have strengths and weaknesses. When the only "support" that can be offered is to make matters worse, then at some point, at least for me, you do "whatever it takes" to separate yourself and yours from this predictable "support-NOT" as those events which trigger the "support" occurs. After all, the only thing any of us can ever HOPE to control is ourselves, and most of the time most of us are deeply challenged just to do that. I get, along with a whole list of hot emotions,--- amused, by people who think they can prescribe the precisely right thing after listening for 3-4 seconds. I call it mucked-up self esteem gone awire, and several other not so nice things in my weaker moments.

Bestjd, 45 goin to 46UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3Southern, IL

[Guest guest]

Maureen

All of what you say in your "outlaw" lines have played out in our world too. In the worst of ways. It's ugly beyond explanation. I think one of the things that is hard to learn with family who are so 'close' is they too have strengths and weaknesses. When the only "support" that can be offered is to make matters worse, then at some point, at least for me, you do "whatever it takes" to separate yourself and yours from this predictable "support-NOT" as those events which trigger the "support" occurs. After all, the only thing any of us can ever HOPE to control is ourselves, and most of the time most of us are deeply challenged just to do that. I get, along with a whole list of hot emotions,--- amused, by people who think they can prescribe the precisely right thing after listening for 3-4 seconds. I call it mucked-up self esteem gone awire, and several other not so nice things in my weaker moments.

Bestjd, 45 goin to 46UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3Southern, IL