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I've been quiet lately because life has been really, really busy.… - The Fucking Bluebird of Goddamn Happiness [entries|archive|friends|userinfo]

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[Aug. 21st, 2004|07:37 pm]
[Current Mood |sadsad]

I've been quiet lately because life has been really, really busy. Kristi arrived while I was in Washington, DC, and we have been bouncing her back and forth between my house and our sister Michele's. She is finally getting some treatment, a topic to which I will return in a couple paragraphs.

With an already-full house, we took baby Carolyn for an overnight visit while Mom and Dad got a well-deserved night out for themselves. She was absolutely adorable, but Ferrett and I had to have her in the bedroom with us and we were terrified we'd wake her. She's also a thrasher, so all night long we kept waking up in fear that she was awakening and would then freak out when it wasn't Mom or Dad who came to her. Didn't happen, but still no sleep.

Then Erin left on Thursday. It was really hard to see her go, and I have turned to tell her something on several occasions only to remember that she isn't here. We really had a wonderful summer. I miss her, a lot.

It's only Amy and Ferrett and me in the house tonight. I decided to research the disease the doctors say Kristi has: loin pain hematuria. They told her that they could move her kidney to the other side of her body and it would be fine.

My research tells me otherwise.

This is a rare condition without a known cause, and the treatment is dramatic - and not very successful. I've been reading forums of sufferers and the concensus seems to be that the syndrome tends to move into the other kidney and the pain continues. These people are in serious, life-destroying pain, and there may truly be little or nothing that can be done about it.

I've bookmarked websites, and printed some information so that Kristi can ask all the right questions when she goes to the doctor. Unfortunately, I have to be the one to tell her that there may not be a magic bullet for this after all.

It's an awful, lonely feeling, sitting here with the information and knowing that I am the one who will have to tell her, and tell the rest of my family, how bad this really is. I feel a little sick.

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From: lousy_timing
2004-08-22 12:00 am (UTC)
I never know what to say in situations like this. I am so terribly sorry that this burden falls to you, especially right now, when you are missing your daughter and probably could use a bit of TLC yourself.

Giant {{HUGS}} to you, Gini, and I'm sending positive vibes your way as well as some for your entire family and Ferrett. It's been a rough year, which is something no one wishes on anyone but is made all the harder when it's good folk you're watching endure it.
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[User Picture]From: tam_maat
2004-08-22 12:05 am (UTC)
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[User Picture]From: brujah
2004-08-22 12:10 am (UTC)
*sends love and peace to you and yours*

If there is anything I can do, in the way of research or otherwise, please let me know.
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[User Picture]From: megthelegend
2004-08-22 12:13 am (UTC)
Oh, shit, sweetheart, that's really hard.
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[User Picture]From: nuala
2004-08-22 12:24 am (UTC)
*hugs* It's better that you tell her than for her to make an uninformed decision. Especially one that could just make things worse in the long run. I'm sorry that it has to fall to you, though. Good luck. *more hugs*
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[User Picture]From: scarletdemon
2004-08-22 12:30 am (UTC)
Absolutely. I'm sorry too.
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[User Picture]From: salix_03
2004-08-22 12:55 am (UTC)
As hard as it is for her to know, not knowing is more damaging to Kristi in the long run, huh? I'm sorry you're the one having to do this, and the doctors aren't doing their gods damned job properly. *hugs* Wish there was something I could do for you Gin, you're good people and you don't deserve this shit.
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[User Picture]From: sageautumn
2004-08-22 01:26 am (UTC)
I'll continue praying for you and yours.
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[User Picture]From: kmccready
2004-08-22 02:43 am (UTC)
Just some :::hugs:::
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[User Picture]From: iggy182
2004-08-22 03:15 am (UTC)
It occurred to me a few times lately, "Hey, What about Kristi?", but it wasn't my place to ask.

I'm sorry that things don't seem as cheery as the doctors are saying, but two things occurr to me:

1) the patients state of mind plays a big role in treating any condition.
Did your research tell you about the effect of not treating it, as opposed to treating it? You say that the treatment is not very successful, but is it better than not treating it at all?

2) did your research turn up anything indicating that the success rate of the treatment might be better where Kristi is now than at other places that have tried it? Could it be that the doctors are genuinely hopeful for success and are trying to bouy her spirits as well?

Just a couple of thoughts.
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[User Picture]From: zoethe
2004-08-22 03:36 am (UTC)
The people who are not receiving treatment all seem to be on the massive amount of pain meds that Kris is on - it just gets worse. And the Cleveland clinic is the top place for treating this.

It's not pretty. In any way.
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[User Picture]From: roadnotes
2004-08-22 04:37 am (UTC)
Ah, shit. I'm sending good thoughts your way, but that's a really sucky situation for you.
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[User Picture]From: susitna
2004-08-22 04:40 am (UTC)
I don't really know what to say, so I'm hugging you a lot long distance.
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[User Picture]From: zoethe
2004-08-22 04:20 pm (UTC)
Thanks, sweetie. I love you so much.
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[User Picture]From: albumlady
2004-08-22 05:11 am (UTC)
Oh hon... My thoughts and prayers are with you and your family. So happy to hear from you, yet sorry the news is such.
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[User Picture]From: kid_lit_fan
2004-08-22 07:28 am (UTC)
This is the sort of thing that no words can fix (unless they're "I have a magic wand that specializes in kidneys," but I don't.). I'm sorry, I hope it works out as well as it can.
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[User Picture]From: batshua
2004-08-22 08:15 am (UTC)

Oh, Gini. Much hugs. That's all I can really say.

Much, much hugs. And may the doctors do everything possible.

I hope everyone gets the strength they need to handle this.
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[User Picture]From: dream_labyrinth
2004-08-22 08:30 am (UTC)
I'll keep you in my prayers.
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