Diane... I know...I do...Truly I do...Re: Thanks to Everyone & My Turn To Vent

[Guest guest]

Diane,

I am glad you have this " family " to vent to. That is what family is

about and what we are here for.

As I read your post, my heart went out to you. I felt like you were

telling part of my life's story. I say that to reassure you that so

many of us are experiencing exactly what you are experincing with

your health, your marriage, your sons and your occupation. So don't

give up my friend. Vent when you must and that is a good thing. But

please don't quit.

I CAN TRULY FEEL YOU AND YOUR PAIN. Why? My wife and kids are going

through the same as it is with many of our " family " members. So let

us draw on each other and find the encouragement needed to take it

one day at a time.

God bless you and heal you my friend and know that you and your

family are in my prayers.

With Godly love,

Brother

I loved " My Three Sons "

>

> Hi Gang,

>

> This time I'm writing for a couple reasons. First off I wanted to

say thanks to everyone who gave me so much great information and also

so much hope. I've felt " alone " for so long and you all have finally

made me realize that I need you for support. I don't really have any

otherwise and I'm getting really depressed. I read as many posts as

I can, and whether they are full of information or someone needing

support from others, they make me feel part of a family.

>

> My sarcoid is spreading throughout my body so rapidly now and it

just seems that within the past few months it's just taken over my

entire life. I can't do anything anymore. So many of you have been

living like this for so long. I don't know how you do it every day.

I know I must be coming out of the denial stage, because the sadness

is setting in.

>

> I have 12 year old VERY active twin boys and a 14 year old boy.

There is never a dull or quiet moment in my house. I also normally

have a daycare business in my home for the past 5 years. I have

watched 1 full timer and 1 to 2 part-timers in the past, but as of

May I have none due to illness. Financially we're broke. My husband

had lost his job back in 11/01 and never made that kind of money

again so I had to start daycare. I am suppose to start working again

4 days a week in two weeks. I don't know how I'm going to do it! I

can't even manage to get through a day without laying down a million

times. I have horrendous backaches (sarcoid is really bad as well as

herniations). I have those pain attacks whenever I overdue it. I

have headaches every day now. I can't stand or sit for any length of

time. I'm just one big mess who feels like the last thing I can do

is baby-sit. If I want to have my meds, I need to work.

>

> The sarc has taken it's toll on my marriage also. My husband is a

good guy, don't get me wrong, he lets himself be in denial most of

the time about me. I know he also longs for the time when I used to

be able to be active and go, go, go all the time with him and the

boys. I know he's just as depressed as I am, but we don't talk about

it. I let my feeling out once recently when I found out the sarc was

in my spine, bones and marrow. I cried and cried for the first time

with him and he was emotional for the first time and I felt like he

finally got it. That didn't last long. Do any of you ever worry

your spouses want to leave you because of the sarc ruining your

life? He give me no reason to believe that. It just my crazy head

talking. I've been married 16 years and I know my husband loves me

and would never leave me because of it, but I think about it all the

time. I feel like I'm keeping him from having a good life now. I

feel like I've ripped him off of a good marriage partner. I know

this must be part of my grief process.

>

> I feel so scared of what my future holds for me. I have so many

docs, but I really don't think any of them are REALLY good with

sarcoidosis. This is what's so frustrating to me and I can see to so

many of us. I pray that some day, the world will take notice of this

horrible disease and realize that we are needing cures so badly. I

don't want to die from this disease. They make it sound like no one

dies from it, but look how bad some of us are. Are they really

telling us the truth? I'm tired of hiding and crying and my kids

finding me and saying " are you o.k. mom? " . I have to say " yes " when

I really mean " no " . I've always been such a strong person who has

overcome so many obstacles in my 44 years, but this sarcoid thing has

finally put that wall in my life that I just can't seem to knock

down.

>

> Tracie, you are such an inspiration to me even when you're feeling

down yourself! I'm praying that you'll come out of the funk your in

and that the Remicade will not cause you problems this time. I can

see you are such a fighter and nothing will stop you. Everyone at

this site needs you to keep fighting! It must feel good to know so

many people need you. I think this is one of my problems right now.

Since I'm at home almost all the time, I feel useless and worthless

to people. This makes the depression set in.

>

> Thanks to anyone who has taken the time to read this and has not

fallen asleep. I just felt the need to vent all my pain and

frustration out this morning. I promise I won't be depressing next

time. It's just nice to know there is a place I can come to when I'm

feeling so down and no one will judge me, because you all know what

I'm going through. I know God will pick me back up again!

>

> Hope you all have a PAIN FREE and Heat Free Day,

> Diane in Texas

>