Re: Hey I am new.-(Jackie)

[Guest guest]

Hi Jackie,

I am sorry you have this old Sarc Monster but I am

glad you found us. We have nearly 500 members now

and most are very experienced with this old monster and

are willing to answer questions and give advice. We are

NOT doctors, but we have been there and done that.

Everyone on here either has Sarcoidosis, Neurosarcoidosis,

or is a care-giver to someone. When you ask questions,

please do give us a day or two to answer, because we are

ALL sick. We have good archives and I am slowly cleaning

out all the old stuff that is not needed and we have files where

you can read up on lots of good info.

We have 2 owners- myself and Tracie; and we have

3 active moderators- Rose, Debbie, and . We have

1 other moderator (Kim) but she is very ill and not online now.

I understand what you are going through. Knowing what

I do about sarc now, I can look back and I believe I was either

born with it or got it as a young child. I had a lot of symptoms

way back then. However, I was not diagnosed until 1996, I

think..........and that came about when I got up one morning and

could not breathe. It had manifested in my lungs. I have

permanent lung damage but am fighting hard. I had a bad flare

up in April of last year; and then got histoplasmosis on top of

that and almost died. Was on a ventilator twice; the Doctors

say it was a miracle. I was in 2 different hospitals and then in a

critcal care hospital for 3 months. I had to learn to do everything

all over again--eat, walk, talk, move....etc. When I came off the

ventilator, all I could do was blink my eyes. So I do understand

how you feel.

I would tell you to "hang in there" and fight hard. YOU CAN

DO IT ! Never give up. I am doing much better now - not healed,

but I can live with my shortcomings. You can too and you WILL

get better. We will give you all the support we can.

Again, WELCOME.

Hugs,

Darlene

NS Co-Owner/Moderator

Hey I am new.

..

[Guest guest]

Hi Jackie,

I am sorry you have this old Sarc Monster but I am

glad you found us. We have nearly 500 members now

and most are very experienced with this old monster and

are willing to answer questions and give advice. We are

NOT doctors, but we have been there and done that.

Everyone on here either has Sarcoidosis, Neurosarcoidosis,

or is a care-giver to someone. When you ask questions,

please do give us a day or two to answer, because we are

ALL sick. We have good archives and I am slowly cleaning

out all the old stuff that is not needed and we have files where

you can read up on lots of good info.

We have 2 owners- myself and Tracie; and we have

3 active moderators- Rose, Debbie, and . We have

1 other moderator (Kim) but she is very ill and not online now.

I understand what you are going through. Knowing what

I do about sarc now, I can look back and I believe I was either

born with it or got it as a young child. I had a lot of symptoms

way back then. However, I was not diagnosed until 1996, I

think..........and that came about when I got up one morning and

could not breathe. It had manifested in my lungs. I have

permanent lung damage but am fighting hard. I had a bad flare

up in April of last year; and then got histoplasmosis on top of

that and almost died. Was on a ventilator twice; the Doctors

say it was a miracle. I was in 2 different hospitals and then in a

critcal care hospital for 3 months. I had to learn to do everything

all over again--eat, walk, talk, move....etc. When I came off the

ventilator, all I could do was blink my eyes. So I do understand

how you feel.

I would tell you to "hang in there" and fight hard. YOU CAN

DO IT ! Never give up. I am doing much better now - not healed,

but I can live with my shortcomings. You can too and you WILL

get better. We will give you all the support we can.

Again, WELCOME.

Hugs,

Darlene

NS Co-Owner/Moderator

Hey I am new.

..