Re: New diagnosis of lupus; MM--congestive heart failure

[Guest guest]

Donna, I haven't found out about the CHF, yet. My appointment isn't until May 12. They have me

on a cancellation list, just in case, but I don't hold out much hope of getting in any earlier. I guess

if I was in the ER, I would get seen more quickly, at least, I hope so. LOL

I am also being referred for a sonagram of my gall bladder. I have to call this morning for the appt.

I don't think that's what's causing my abdominal pain, though, since it is on the wrong side for the

gall bladder. We'll see, and it can't hurt to eliminate other things from the picture.

Like you, though, I often feel that this disease sort of nickels and dimes us to death with "just one

more thing", all the time. Just when you begin to adjust to life with one aspect of the disease, along

comes another...and you can't catch up. And, you know, accepting the fact of the disease is not

the same as giving in to it. Always remember that, honey. It seems so hopeless at first, and then

you find that you CAN have a life, that making adjustments in order to live WITH the disease is not

quite as difficult as it seems at first. That you CAN do many things, just differently than you did them before. And, no, it wasn't easier for me than for you, I just have more years at it than you.

There are days when I despair, too, but they are fewer and farther between than they used to be.

For one thing, I can't afford to waste my energy on worrying over things as much as I used to do. I

just don't have the oomph to obsess over things. For another, it takes me so long to finish a task

these days, that I can't afford the time to worry much, anyway. LOL

I try to find ways to be productive and loving with my children that do not take up all my energy.

On bad days, when I'm down more than up, they are welcome in my room to sit on the bed, share

their thoughts, play cards, watch TV with me, or just be together. My twelve year old is especially

fond of sitting on my big bed with me and watching movies together. In fact, he just came creeping

into my room and snuck under the quilt to watch me type. LOL He needs to get ready for school,

though, so I'll have to sign off.

You take care, have a GOOD day on purpose and fool the world. Loving hugs, MM