Tuesday, January 24, 2017

How Much Time Is Enough Time

I finally got my copy of To Joey With Love.  There are things in the documentary that are not on the blog, and there are things on the blog that were not on the documentary.  All in all, two thumbs up.  I wish Rory had made it longer, gave us more.  But I guess there's just so much, that is so private and personal.  I can understand that.  They have two years worth of video, and we got and hour and a half.  I really wish it were longer.  But other than that, I can highly recommend it.  A beautiful love story, a story of hope, of faith, and the belief in something bigger than ourselves.  Joey was the kind of woman I long to be.  If I only had half her tenacity, and personal strength.  Joey is showing me how to face my own end, with courage and strength.  I sobbed like a little kid at the end. 

Joey lived about 4 months once the doctors told her there was no more they could do and she stopped treatment.  4 months to prepare, to say good bye, to hold those she loved.  How much is enough?

It is my understanding that RA-Lung, on average, takes about 2 1/2 to 4 years to work its evilness.  Some less, some more.  Depending on how fast one progresses and everybody is different.  The only for sure way to know is to have a biopsy.  And I refuse to do that.  I am not going to put my body through that, nor myself through the expense, just "to know".  I know how I feel.  I know its coming.  I think I'd rather be "surprised".  I'm down a year since the diagnosis.  A whole year already.  And I have declined greatly, especially now with the pulmonary embolism, which just adds a whole new layer of "difficult" to the recipe.  Sometimes, my chest feels "hollow".  I understand that may make no sense to anybody but me, but its the best word I can find to describe it.  Just a hollow feeling.  Sometimes my heart pounds for several beats and I almost lose my breath.  And then I begin to wonder.......How much time do I have.

I told the Mr. over the weekend that I wanted to buy some gifts.  He said, "what gifts?  For who?"  I told him I want to buy a baby gift for our youngest son and new DIL.  He said "but she's not pregnant", and I said I know that, but she will be one day.  And I probably won't be here.  I want to buy something for the grandbaby I'll probably never get to meet.  And I want to buy our grand daughter a present for her 16th birthday.  Something special.  I was thinking about taking the little gold ring I have that my mother gave me for Christmas when I was 12 and having a new stone put in, and giving it to her.  The original tiny little diamond chip fell  out long long ago.  I was thinking of replacing the stone with her birthstone, and giving it to her Aunt Wendy to save for her, for when she turns 16.  I thought that would be a nice gift.  Its profoundly sad to have to think on these things.  But think on them I must.  I don't know how much time I have.  But if I'm honest, I don't see myself still here this time next year.  Not unless the lung issues slow dramatically.  Only God knows. 

I felt so good for several days after the prednisone test and adjustment.  Today, not so much.  My heart has been pounding and skipping beats, and when that happens I get light headed.  Some days, all I can do is cry.  Because I know, I'll never get better.  I'll  only get worse.  And that is sad.  I try to hide as much of it as I can, keep it to myself.  That way nobody hurts but me.  I don't mean this in a *mean* way, but I just can't talk to the Mr. about this.  I try.  But usually he just clams up, or changes the subject and 20 minutes later when I come to, he's talking about something and I have no clue what it is.  So I keep it mostly to myself.  I can't talk to my kids.  My youngest rejects it.  I think he believes I'm going to survive this.  but I'm not.  So I just "pretend" with him.  So he doesn't hurt so much.  Our oldest, well, he doesn't talk to us.  And I'm beginning to think maybe that's for the best.  Make distance now, so it doesn't hurt so much at the end.  I think, I've suspected for sometime, that I am severely depressed.  It's probably just the prednisone, but still.  I honestly can not remember the last time I laughed till I cried.

How much time is enough?  There's no answer to that, IMHO.  I don't think there's ever enough time to prepare.  But I do know, its going to be ok, even if its not ok.


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