bad night last night....wednesday post

To India & Peter, now in Sydney! The surgerywas called off today. but there is still trouble with the drain line. i do understand some things better now about my body and about how bad my nurse is. about her: it has all been revealed: she is terrible.

anyhooooo, last night was the dark night of the soul if you know what i mean. i went to bed giggling about john and something but i lay there and my heart raced and my fluid was soooo uncomfortable - especially my 8 pound labias (vagina has swollen to pumpkin size) I had had a long talk with Rebecca Bell who has stepped in wih interest as a long time nurse to help me figure this out. and she was called in a panic when I grew between my legs on Saturday. She gave me some options that I hadn't thought of and introduced the idea of switching to hemo dialysis (the blood one, with a port in my arm)
I couldn't stop crying thinking about how i was robbed and never told about the downside of PD. That silly nurse candy said with PD you only have weight gain. I thought I was doing something so good to overcome vanity - to have conquered vanity to go on and choose this kind of dialysis. anyhow, I never heard about the constant diareah or the 35% dropout rate in PD or especially the slow drains and the 8 hours a day! I t has been 13+ weeks and still not on the nighttime process.
anyhow, it all sounds managable this morning but i couldn't stop crying. I think i recognised that it was partially the urea in my blood that was making me not sleep (i slept like 2 hours the night before) and think too much. I called john downstairs by phone and asked him to come talk to me. He came onto bed and settled in with his back close to me. this made me ball harder. he was saying all of the john thngs like making jokes which made me gag on tears and laugh then start crying again. I was heaving...and I started this, i need you to pat on me, i need you to say something kind, i need you to not joke right now. we are both so good at joking I'm scared here. I'm ashamed to say this, but I said: you need to pretend you are someone else like BILL CAMP and be nice to me. oh, it does make me cringe this morning.

John was just gorgeous and finally got me calm. but then i was awash with all the guilt of how much I've put on him in the last year. and then i couldn't stop again. i kept saying, I've been so good. I haven't been crying much. I never do this. I've been sick all my life....boooooooo hooooo. and then, unbelievably, i could see how ridiculous it all sounded and started laughing. I told him that I was sorry I was so positive to everyone else and that I had to tell someone every ache and pain. he heard it all. so i tried to be quiet for his sake and he finally went to sleep. At 3 i decided to quit trying. He is amazing.

my thoughts went to my closest frineds and my endless outpouring of complaints to them. I am constantly just giving out my symptoms, my feelingsmy ups and downs. the crazy thing is, they hear all of the manic happiness too. My latest thing is a complete brag list that I posted on my website and on Facebook yesterday. total exploration & expoitation of who and i am, and trying to reassure myself! I got what I wanted, some funny notes, ie, attention. I like it way too much, the attention.

so last night things spiraled on and on for what seemed like hours but I could see it would get me nowhere. I wrote an essay in my head about "Living with an Unexamined Life Person" in praise of John Lott and his ways. I wrote a letter to you. I wrote a letter to phil and bruce and kim and Tom Wofford thanking them for loving me even though I cannot ShUT UP right now. And Kat for everything lately. And Amy. I couldn't help but think about legions and legions of prayers sent my way. God is up there thinking, she has fooled EVERONE in the south. India, there are people at churches that are praying for me. There are reports of churches that I've never heard of that have me on a prayer list. I have over 300 prayer letters ina bowl here at the house.

and the crazy thing is I know that it is working.

I love y'all and thanks for listening!


PS I just reread this and it sounds so dramatic. i was mad upset last night but the sun is out and it is 15 degrees outside. I find it very nice. I'm going to be good and it really is going to be a good day. I barely have any symptoms. I must be much stronger for when the real pain comes! ha LOVE YOU