Autoimmune.........

[Grumpy's Wife]

Paige I'm so glad you got some good news.

 

[L107ANGEL]

YAY PAIGE!!!!

 

[Tigger&Belle]

Such is the nature of autoimmune. So this is happy, happy news and yet I am angry. I won't go into all of it, but basically this thing controls us and holds us captive. I wait for the other shoe to drop. I do not like relinquishing control to this whatever-it-is. I do not trust this eye of the storm. Please don't lecture or flame me, I just can't take it. I have some pretty big guilt for not being able to enjoy this.

Oh, sweetie! I really think it's perfectly normal to feel like the other shoe can drop at any moment. Very glad that you got some positive news.

 

[minkydog]

Ahh, I don't understand it either, but I sure recognize the feelings. Sometimes you just want to get on with it, ya know? Except you don't. Ack!

Glad you got some good news and you have this calm time. Now we'll pray for some quietness of spirit in your household.

 

[PixiePop]

Paige~

I am glad you got some positive news.

 

[Miss Jasmine]

Paige, It is good news, but I do understand what you are saying.

 

[hiwaygal]

Paige

I can understand how you are feeling...we'll celebrate for you

 

[paigevz]

Yeah, I kind of figured it out. It's good news, but it came with the bad news. It's temporary good news. He's better right now. Buys us time. But they also threw in that NEVER GOING INTO REMISSION part. We knew that was an ultrasmall chance, but it was a chance.

The really great part though is he is much more accepting of it, and we can talk about it. His left shoulder still is giving him a lot of muscle pain. This has been months now. We talked last night about the possibility of it being from the liver or the meds or both (and also laughed about it maybe just being from nearly being 40).

So, we made it up the hill on the coaster, I got a little scared at the top there.........it's okay, we're going down now........then we'll just coast a while.......until the next hill.

 

[Miss Jasmine]

I'm so glad you can talk about it now. That makes a huge difference.

 

[paigevz]

So our last sonogram came back free of liver cancer............still coasting.......time is so important...........time is all we can ask for.......just time.

Just one year of love
Is better than a lifetime alone,
One sentimental moment in your arms
Is like a shooting star right through my heart,
It's always a rainy day without you,
I'm a prisoner of love inside you -
I'm falling apart all around you - yeah.
My heart cries out to your heart,
I'm lonely but you can save me,
My hand reaches out for your hand,
I'm cold but you light the fire in me,
My lips search for your lips,
I'm hungry for your touch,
There's so much left unspoken
And all I can do is surrender
To the moment just surrender
And no one ever told me that love would hurt so much,
Oooh yes it hurts

 

[paigevz]

So originally this thread was for me, and then it was for anyone else who may need it, who may be going through it and not be able to post about it.

Well, it won't help them if I don't post.

All has been well until May. My oldest son finally had had all he could take and began acting out in a big way. Perhaps it was even in April. He's been put into crisis counseling and now is beginning to stabilize. My youngest began imitating the oldest just recently, but as my oldest begins to get a handle, the younger is just crying a lot. So am I.

Dh has started showing some signs of a flare-up, and when he does that, I get nervous.

But whether he is showing signs or not, everyone in the house is held under the shadow of not knowing. This is such an awful thing in that way. It's great that they can feel quite well at times, but it's horrible that you never know when they'll feel like crap, and when it will finally be too much.

So our three big bad wolves are cirrhosis, cancer and pneumonia. Any one of them can occur at any time. Well, the cirrhosis is occurring, but sometimes faster, sometimes slower, and no one can say when it will be enough to cause organ failure.

No one really knows anything, and that is frustrating. All they do is wait and watch and adjust meds to slow the cirrhosis. IF he develops cancer, THEN they say..........then what? IF the cirrhosis gets too bad, we'll try methotrexate, we'll try chemotherapy, we'll try.............try. They don't know WHAT to do. And none of it does anything but slow it down. If he develops pneumonia, there will be nothing to try, his system is too down.

There's nothing more to say.

 

[L107ANGEL]

aw Paige

 

[Grumpy's Wife]

Paige I'm still keeping your family in my thoughts and prayers everyday.

 

[paigevz]

Edema. He came home from work with edema.

Do you know he's told me that he wants to be cremated? He wants his urn on the mantle. He made a joke about knocking himself off when he doesn't like what's happening. He said knowing my housekeeping skills he'd just lay there and get ground into the carpet. I promised him I'd dustbust him up and pour him back in. He watched a show on buying the containers to be cremated IN and told me I am to buy the cheapest cardboard box they have. I can NOT get that image out of my head. Him in the flames.

How do I do this?

Tricia, Angel.