Re: Feeling jumped on, follow-up after treatment, and so on

[Guest guest]

Peggy ... well said!

JEEZZZZ ... these posts are getting so good, some should be

published. Carolyn to ... Breakfast with .

I think I better re-read mine!

Seriously, you are right on. We write because we care. Sometimes

that one sentence makes you re-think your position.

Please try to read these like you would read a magazine article.

Take it seriously, but just use what you want to use ... BUT ...

think it thru.

Kathie

*************

> Hi all:

I was kind of moved by some of the posts over the last couple of days

regarding two topics in particular that I wanted to share my

thoughts about: " Feeling jumped on " : Several have mentioned over the

past few weeks that they have felt like when they have posted ideas

or strategies for treatment, that they have felt a backlash of

opinion, disagreement, advice, etc. that can sometimes feel like

criticism. I can remember the time when, in early 2005, I was

looking for a way not to have this disease, rationalizing that it

really wasn't that bad, that I did not to need the surgery I timately

got in August 2005 with such great success. Also, I can remember my

quandry about treatments: botox, dilation, and surgery (lap or vats -

- wrap or not to wrap) as well as troubles with insurance coverage.

I also came to understand how right so much of the advice about

moving forward promptly with quality, specialty treatment is with

this rare condition that few MDs really understand. How much I wish

I had dropped all I was managing in my life to get well now that I

know how time affects outcomes.

People did jump in -- some softly and some squarely onto my head --

offering me their advice, their experience, their confrontations.

their contrasting perspectives as needed to get me to the right

place. That is why I read every post, every day. It is the value of

the site to get a variety of perspectives and I am happy to risk

feeling the brunt of criticism to obtain the valuable information

provided here. This site saved my health with its focus on

getting to the right treatmentI think that every person here has the

intention of offering their wisdom out of caring and out of the

special commoness that we share in this cyber space dedicated to this

disease. If you feel jumped on, please don't go away -- speak up

and the members will adjust their tone -- the intention is almost

always a desire to help.

Follow-up treatment: Because I am part of a research study, and

because I have a moderately advanced disease, my surgeon has a

stepwise plan for following me over the course of the next several

years. Some of you have been sent packing, without a plan for

monitoring the course of your disease and the health of your

esophagus. I hope we will all go back, at our next appointment, or

no more than a year after we finish treatment, and ask for a schedule

of follow-up that will help us keep on top of our condition. We do

not want to get to end stage achalasia unnecessarily or to having

other serious conditions of our esophagus.

What stage am I?: I keep forgetting to ask my doctor and this is a

reminder to all -- ask your doctor about the stage of your condition -

- we exist on a continuum, with some of us never advancing past a

certain point, and others progressing rapidly. We should have

information about where we are and what the prognosis is for our next

few years.

> Peggy

>

[Guest guest]

Well said both of you and everyone else.

Peggy, I drove a railroad steam engine over your head followed by a jack hammer here and in private emails. Weren't you just going to wander into your HMO clinic and get a little botox shot in your first posting, within a day or so. We all jumped on you to stop, stop, stop and research a little more. Then I think you hid for a while, until the symptoms made you come back to us, because there really isn't anywhere else to go. Like an old boyfriend or girlfriend you can't get out of your mind. (Ahhhhhh noooooo, done with those memories.)

Sandy in So Cal.... whose usually non-forward thinking husband came home early to take us all to early Valentine's dinner, but my son and I are still working on a Vermont paper. I'm waiting for the great author to finish his Intro and Table of Contents so I may type it. But wasn't that sweet of my usually non-forward thinking husband. He knows I don't like crowds so he gets a bunch of extra points, but don't tell him, I like him to think he has negative points.

> > Hi all:> I was kind of moved by some of the posts over the last couple of days > regarding two topics in particular that I wanted to share my > thoughts about: "Feeling jumped on": Several have mentioned over the > past few weeks that they have felt like when they have posted ideas > or strategies for treatment, that they have felt a backlash of > opinion, disagreement, advice, etc. that can sometimes feel like > criticism. I can remember the time when, in early 2005, I was > looking for a way not to have this disease, rationalizing that it > really wasn't that bad, that I did not to need the surgery I timately > got in August 2005 with such great success. Also, I can remember my > quandry about treatments: botox, dilation, and surgery (lap or vats -> - wrap or not to wrap) as well as troubles with insurance coverage. > I also came to understand how right so much of the advice about > moving forward promptly with quality, specialty treatment is with > this rare condition that few MDs really understand. How much I wish > I had dropped all I was managing in my life to get well now that I > know how time affects outcomes.> People did jump in -- some softly and some squarely onto my head -- > offering me their advice, their experience, their confrontations. > their contrasting perspectives as needed to get me to the right > place. That is why I read every post, every day. It is the value of > the site to get a variety of perspectives and I am happy to risk > feeling the brunt of criticism to obtain the valuable information > provided here. This site saved my health with its focus on > getting to the right treatmentI think that every person here has the > intention of offering their wisdom out of caring and out of the > special commoness that we share in this cyber space dedicated to this > disease. If you feel jumped on, please don't go away -- speak up > and the members will adjust their tone -- the intention is almost > always a desire to help.> Follow-up treatment: Because I am part of a research study, and > because I have a moderately advanced disease, my surgeon has a > stepwise plan for following me over the course of the next several > years. Some of you have been sent packing, without a plan for > monitoring the course of your disease and the health of your > esophagus. I hope we will all go back, at our next appointment, or > no more than a year after we finish treatment, and ask for a schedule > of follow-up that will help us keep on top of our condition. We do > not want to get to end stage achalasia unnecessarily or to having > other serious conditions of our esophagus.> What stage am I?: I keep forgetting to ask my doctor and this is a > reminder to all -- ask your doctor about the stage of your condition -> - we exist on a continuum, with some of us never advancing past a > certain point, and others progressing rapidly. We should have > information about where we are and what the prognosis is for our next > few years.> > Peggy> >>

[Guest guest]

Dude you rock!! Carolyn mom of Cameron.. going to SF for a heart dissection on Valentines day! (school) Peggy Cordero <pegster@...> wrote: Hi all:I was kind of moved by some of the posts over the last couple of days regarding two topics in particular that I wanted to share my thoughts about:"Feeling jumped on": Several have mentioned over the past few weeks that they have felt like when they have posted ideas or strategies for treatment, that they have felt a backlash of opinion, disagreement, advice, etc. that can sometimes feel like criticism. I can remember the time when, in early 2005, I was looking for a way not to have this disease, rationalizing that it really wasn't that bad, that I did not to need the surgery I ultimately got in August 2005 with such great success.

Also, I can remember my quandry about treatments: botox, dilation, and surgery (lap or vats -- wrap or not to wrap) as well as troubles with insurance coverage. I also came to understand how right so much of the advice about moving forward promptly with quality, specialty treatment is with this rare condition that few MDs really understand. How much I wish I had dropped all I was managing in my life to get well now that I know how time affects outcomes.People did jump in -- some softly and some squarely onto my head -- offering me their advice, their experience, their confrontations. their contrasting perspectives as needed to get me to the right place. That is why I read every post, every day. It is the value of the site to get a variety of perspectives and I am happy to risk feeling the brunt of criticism to obtain the valuable information provided here. This site saved my health with its focus on getting to the right treatmentI

think that every person here has the intention of offering their wisdom out of caring and out of the special commoness that we share in this cyber space dedicated to this disease. If you feel jumped on, please don't go away -- speak up and the members will adjust their tone -- the intention is almost always a desire to help.Follow-up treatment: Because I am part of a research study, and because I have a moderately advanced disease, my surgeon has a stepwise plan for following me over the course of the next several years. Some of you have been sent packing, without a plan for monitoring the course of your disease and the health of your esophagus. I hope we will all go back, at our next appointment, or no more than a year after we finish treatment, and ask for a schedule of follow-up that will help us keep on top of our condition. We do not want to get to end stage achalasia unnecessarily or to having other serious conditions of our

esophagus.What stage am I?: I keep forgetting to ask my doctor and this is a reminder to all -- ask your doctor about the stage of your condition -- we exist on a continuum, with some of us never advancing past a certain point, and others progressing rapidly. We should have information about where we are and what the prognosis is for our next few years.That is my 2 cents.Peggy