Thanks to Everyone & My Turn To Vent

[Guest guest]

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