Please Read

[Guest guest]

Hello:

One of the main reasons for starting this group was to head in a positive,

or a better way to put it, a different direction than some of the other tcs

groups were/are headed. We already have a group for support and one for

making friends. It was our hope that with this group we would have more

input, or to be more involved is a good way to put it.

An example of this is the online writing group that may be starting up. I

don't know about others, but I don't spend a lot of time on myself. Yes, I

go to doctor appts. (up the ying-yang) and I take my meds and think about

this condition, but I don't do much at all to deal with it in a positive

way. I heard a good line the other day, " If you don't take care of yourself

first, you can't take care of others. "

I see this as how the online writing group would work. Whatever problems

you're dealing with as individuals, you would be working on getting your

emotions/troubles/etc. written down and ultimately dealing with them. I

know from my own teaching experience which included writing, sometimes you

don't even realize you're having a difficult time dealing with something

until you write about it and all of a sudden things become very clear.

These sessions would be different than keeping a journal or a diary about

your daily life. This is an opportunity to work online (in a way that's

probably never been done before and hopefully once we're into it we can

share with other groups our positive experiences), on ourselves and share

with each other if we want.

I really hope others will come forward with interest in this. It wouldn't

take a lot of time, it's a way to do something new and exciting and for

ourselves, which would ultimately be for others too.

The other opportunities I want to discuss are:

1) If anyone has any other ideas on how to work online to improve ourselves,

please bring them forward...DO NOT BE SHY. This is what this group was

started for.

Maybe it would help to reiterate what we started this for and what our visio

ns are:

To ultimately start a not for profit organization raising money for

awareness, education and research into TCS. This would include once a year

get-together that would include speakers, informal meetings, etc. Also, to

have brochures made up and put into pediatricians offices to help them

recognize this condition and to help the parents of kiddo's with it, for

nsg's and neuro's offices, etc.

I know this a huge goal and there's a lot of work to just get started on

this, but with others' help, it can be done.

Speaking of get-togethers, has graciously offered to host one this

June in her home state of Tenn. She is working very hard to put together

some conferences and meetings, and to have free time. If you're interested

in either attending or helping her out, please, please email her privately

at LAVAD@... She works full-time and has the same issues we all

deal with and I'm sure would welcome some people that truly want to help in

anyway they can. Congratulations to for putting this together. I

hope members will try to attend so her efforts aren't in vain.

2)We will eventually need a board of directors if we get the not-for-profit

off the ground. If anyone has experience with this, please step forward or

if you're interested in being a member of this, please email myself,

Roxanne, or privately.

3) We also want to have regularly scheduled online chats with specialists.

To do this though, we need help finding some that are interested in helping

us (specialists.) Sue has graciously and heroically offered to talk to her

physiatrist about this. If anyone else has a good report with any of their

doctors, please feel free to discuss this with them and let us know the

outcome.

As you can see, we want this group to be as pro-active as possible. Not

just writing to each other with information and support (although that's

definitely to be included in our mission), but to reach out in ways that

haven't been done before with each other.

We deal with very specific issues and cross many dx'es, not just ours. We

deal with spinal cord damage, bladder/bowel damage, pain mgt issues, etc.

As you can see, many other dx'es also are dealing with these too and we hope

to get input from those that have much more experience with these than we

do. This is new ground we are treading on here (for our dx) and it's going

to take a lot of time and effort to accomplish all these goals and more, but

with help from members, I foresee us being able to do this.

One more: I want everyone to know that they are free to write about any

subjects they feel they need/want to. We aren't just this condition. There

is so much more to all of us and to understand what we all deal with and

where we are coming from, it would help to know each other better. It's

scary, I agree to do this on a forum we're many/most of us haven't met and

there's a chance we never will. But, I feel this is very important and

there's a way to do this without feeling that we are giving out too much

information or that we are putting ourselves at risk.

Everyone's input on all posts is so important. Sometimes it's easy to sit

back and say, " Oh, that post got three responses already so there's no need

for me to write in. " However, there is. Just to know you're out there,

read it and that you cared enough to respond is sometimes what someone

needs. Not everyone has someone else in their life that they can bitch to

about their pain level, or their day or obstacles they ran into. Once you

start writing in and letting us get to know you, it gets easier and easier

to be involved.

Last thing (I promise.) I can't begin to tell you how wonderful it is to

meet others with others that have this condition in person. If there's

anyway you can possibly do it, do it. I have met so many wonderful people

from this list and the TCS list. It has helped me immensely in so many ways

(too many to post right now.) I thought one way to do this is to write a

short note, telling us where you're from. Those that are in close

proximately to each other could set up a meeting if they wanted. I can't

emphasize enough what this will do for you.

I'm sorry for the length of this post and if you've made it this far...thank

you for taking the time to read it. Please, think about what I've asked of

you. If you have the time to help in way, please do it. We owe it to

ourselves and this condition to do all that we can in a positive manner. If

you don't have the time or are still in lurking mode, please stay with the

group. I'm sure you're getting something out of this and hopefully after

lurking for a time, you'll feel more comfortable to come out and let us know

who you are and what's going on with you.

Kathy