I'm sure we all go threw it. But I'm feeling like there isn't anyone to really talk to. Everyone has their own triales they are going trough. Many worse then mine.
You are never alone when you are here momof2 (((HUGS)))
It is better here, I don't feel alone anymore and people here understand and probably have gone thru what you have. Those who don't have an autoimmunity problem, want to listen but zone out after a while, seems like too much for them.
XOXOXO
Feel free to vent if you need to.
I'm going through a bit of a similar row with myself over this now.
You are not alone here. We all care about each other.
God Bless
susanep :) :)
This is the best place to come and not be alone. Sometimes I think I am losing my mind and going crazy, then I come here and realize we all feel the same and I am not alone. It is just the reality of Sjogrens!! I wouldn't know what to do without this forum!!! So, just remember -- we do understand!
Liz D.
Yes Momof2, I have called this the lonely disease, I never personallly meet anyone who has even heard of SS.
so it's hard to talk about it to anyone face to face.
This site is an oasis for us, we moan , we do laugh (at times)but most of all we know how each other is really feeling .
It gets on top of everyone at times , then we come here and are cleansed so to speak,
Sending big hug's and sympathy, hoping you cheer up soon, Hugs Dolly
Momof2:
Even though I can't see the faces, in MY world, this is the only place of comfort concerning my SjS. (Well, besides praying. :) ) No one in my family really understands, and co-workers don't know - only 3. And, forget friends. I don't really have many due to being so tired all the time. Momof2, always come here...we care. :)
CAT
I have not found anyone who understands quite like the kind people here.
I think that we understand each other because we feel it and live it daily.
It is probably impossible for others to fully "get it"!
Although I have not posted here often, I feel as if I could say anything here.
My thanks to everyone!
It's just been a weepy day. I've cried to my husband and to a few friends. They all try to be encouraging.... but really... it's not going to get better and I know it. Sucks really. I know I'll still have good days but I always know pains, fatigue and all the other things are going to be waiting right about the corner for me. My compainion for the rest of my life. That is such a hard thing to wrap my brain around. Do I have to morn my old life. The life where I went bowling, running, playing in the backyard with my kids. I have a little girl who is just 6 years old. I HATE telling her mommy is to tired. HATE IT HATE IT!!!!!!!!!!!!!!!!! She wants to go to church tonight. Just the thought of getting ready brings tears to my eyes.... because I am so tire and my arms feel like lead.
I want to jump up and down and SCREAM about the injustice of it all. Not for me... but for her and the rest of my family. I'm sorry for them I'm sick. I don't want to be a burden to them... I want to play and have a good time.... ALL THE TIME!!!! Not just once in a while.
So.... there you are and there you have it. My new reality. "Suck"
Pam
wants the 'old me' back
ME TOO!!!!!!! dbab.... Me too
Yep, it's very hard... and I totally understand as you see (my title). With young children, it has to be extra difficult. What you have to do is cherish the good days and not focus on the bad days when you are living those good days. It just makes for a horrible time. Enjoy the good times, thats the best gift to give yourself AND your family (especially your children).
You are probably going through bad days right now, maybe you can do activities with your children that don't take much energy out of you but that still keep you involved. Does your daughter like dolls? Maybe play dolls with her on the floor? or board games? and leave the running around activities when you are doing well. (I have a boy, I didn't get to play with dolls in my adulthood - I missed out lol)
Just make the best with what you have. I know its hard, but your children love you no matter what. Always remember that!
Pam:
I have 4 daughters and they are always on the go. I have to suck it up and just DO IT, and it drives me nuts how much I hurt all the time, and how tired...EXHAUSTED...I am. But, they do have to "go", don't they! I know my teenagers are sick of hearing it from me. (I am just trying to make their lives nicer, as I was so restricted as a kid. I could never have anyone over, spend the night, go out much.) Anyway, we're thinking about you. :)
CAT
Cat. I sucked it up tonight and took my girl to church. Funny.... the message tonight was about grumbling. Hummmm... glad I went.
momof2,
I'm glad you were happy to enjoy church. Funny how the sermon comes close to home to us so often. :)
You are never alone, here. You may not know it, but some of us are praying for you. We care. We understand. I know that I am so grateful for this comforting place to come.
Take care of yourself,
Melinda
This thread is very enlightening. So many different situations, some with children, some alone. I'm wondering after reading this that perhaps those with children are lucky for the fact this SJS "keeps them going." I know it must be far more difficult without kids to care for, but sometimes you just must keep on the move. When I was still working, the last 5 years the only thing that kept me going was the fact that "I had to work." Well, finally I got so bad I went off on disability. But I am glad I kept working and glad I HAD to get to work, even though I missed a lot of work.
Some people are alone, and very lonesome and I don't think this is preferable to the situation above. More time to feel sick and sorry/bad for yourself.
I think we all have our plates full. Some of us are older with sick spouses, or no spouse. This board is just what the doctor ordered for all of us. It doean't matter if you're young, older or busy with children and/or job. May we all have a great day tomorrow. Lucy
Pam~ My kids are 8, 10, 13, 14 and 15....my 13 yo stepson and 15 yo stepdaughter don't live with us, but we still go to all their games and functions too....so count me in on the suck it up club!!LOL No matter what ya tell the pixies and trolls (kids), they still don't get it cuz ya aren't throwing up (at least at the moment they see ya) or bleeding...so why can't ya take em to the playground of dreams...I know the feeling!!LOL ;)
Sha who sees the cleats sticking their tongue out at me cuz soccer season is about to start!! :o
Momof2: It always seems to work that way ..for me anyway...in church! :D I was complaining ABOUT complaining the other day to this board, and that day my pastor posted a link about complaining on Facebook. YIKES! :-\