my update, something I found online that helps me with a journal and share with family

[Guest guest]

Hi all,

I see that everyone is struggling, as I am, with the dragon breathing down

our necks. I have found acceptance with this dragon years ago, but have

lately learned that acceptance isn't just accepting the dragon, but also

accepting things like " having your family change schedules all the time for

you, and having your friends and family always 'on call' for you " . This

disease is truly one of learning how to be in the hands of many others and

being gracious about it.

For all you newbies out there, I want to welcome you to our family. It truly

is a second family for me. This group has been with me through many hospital

stays, broken bones, infections, surgeries, years in bed, etc. I have had it

rough the past few years. Lately it is getting a little bit better. To the

point where some days I have 2 or even 3 hours out of bed. I rejoice on

those days. Because I remember the days that it was hard to be out of bed

for an hour.

For those of you just diagnosed, I remember the horror, the tears, the fear,

the unknown, along with, the " thank GOD " , they finally know what is wrong

with me feeling. I was a VP of Information Services when I got sick. I was

determined to not let this DRAGON take me down. But I guess my Type AAAA

personality wasn't going to have much say, because after about 20 months of

working after getting sick, I agreed to a six month leave of absence, I

really thought I was going to be able to go back to work. But all my Doctors

told me that they knew the only way they would get me to stop working was to

agree to a leave of absence. Five months into that leave, I was worse and

the Doctors told me I had to at least extend my leave or consider stop

working all together. I extended my leave, but after being off another year,

they told me it was time to face the facts that I would never work again and

give up my job. That was one of the hardest days of my life. The day the

Doctors told me that, they said that they knew that from day one, when I

took the leave of absence that I probably wouldn't go back, but since I had

so much determination to go back, they didn't want to squash that hope,

because you never know what hope can do.

Anyway, since the beginning I have wanted to have a way to share my thoughts

and feelings with my family and friends. A way in which they could also

write their feelings down also, but this was 2000-2001 and I wasn't able to

find a way at that time. There is a great way now. I just recently found

it. Some of you may already know about it. A lot of people use the site

when they have cancer, but it is also set up for chronic illness. I set one

up for myself. I wanted everyone to know because my family has been finding

this to be a great way to come to full acceptance, to share and to heal. It

is called CaringBridge.Org (yes it is a web site, but you make your own

page on it. It is really easy to make your own site, you can even customize

the look of it. For those of you interested in seeing what one looks like

you can go to mine, just ask me for the site name and I will send it to you.

To create your own, it just takes a few steps, I found it really simple. You

just go to www.CaringBridge.Org I wish I had found this when I had first

gotten sick to be able to share with family and friends how I was feeling

(emotionally) about my illness.

I hope everyone has a pain free day and is hanging in there. Life is a

mystery, but we can just make the best of things. It's not always easy to

do, but when we do, we find great rewards.

Hugs to all,

Alli

It is a resource for anyone interested in using it to help them walk through

their challenges. This is just an FYI to those that may like to use it also.

Hugs to all

[Guest guest]

Alli,

Hi, it's good to see you post and especially that you have found a caring site

where anyone can go to write and share.

I know often Cat and I talked of writing and I even started once upon a time but

have since let it slide. I think when I get a spare few minutes I will go there

and transfer what I have begun and then continue it from the page I create.

Once again, it's good to see you and I hope you continue on your path of feeling

some better.

Smiles to you,

From: allisonssong@...

Subject: my update, something I found online that helps me with

a journal and share with family

It is called CaringBridge.Org (yes it is a web site, but you make your own

page on it. It is really easy to make your own site, you can even customize

the look of it. For those of you interested in seeing what one looks like

you can go to mine, just ask me for the site name and I will send it to you.

You just go to www.CaringBridge.Org I wish I had found this when I had first

gotten sick to be able to share with family and friends how I was feeling

(emotionally) about my illness.

I hope everyone has a pain free day and is hanging in there. Life is a

mystery, but we can just make the best of things. It's not always easy to

do, but when we do, we find great rewards.

Hugs to all,

Alli