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

Rushed email this morning and update....

Well, I guess I’m going to rationalize this by saying I think over-exaggeration is better than nothing. There is a chance that I may not have surgery. I have learned another trick about filling and emptying and it worked last night AND this morning. It also involves a third factor…re completely empty bowels and small meals. While I still have surgery scheduled for 11am tomorrow, I have decided to question the procedure a bit more and Candy is going to cancel her meetings this morning to see me drain. If the performance is as good as it was at 6am and 10pm last night, I may put off the surgery. I still have 6 or so extra pounds of fluid and I only slept an hour last night (I’m back on the high urea in the blood stream High/low feelings), but the swelling has gone done some.

I am rushing to the pharmacy to pick up meds, Office Depot for real estate stuff and off to meet Candy at the clinic by 9am!!!! Nap time this afternoon! But first some eggs





....(a little more later!)

25 Random Things: Facebook Made Me Do It.....sorry

1. I used to write country music gossip for the National Enquirer. I snuck into Wynonna’s wedding and all sorts of undercover hospital work!

2. I pull over for all large or unusual birds, even if I have a mulit-million dollar client in the car. I’ve traveled to many places but my favorites involved animals: safari in Africa, monkeys & macaws in Costa Rica, whales in Hawaii and an "official" guided tour through Yellowstone to see the Wolves with dignatiaries.*

3. My father and I have a card trick called the Wizard that is very impressive and in demand. Ask me about the Wizard.

4. I live with John and have for the past 11 years and we have a great deal of fun. I’d rather John be the driver in all occasions, no matter who we are with.

5. I don’t like courtroom dramas or lawyer movies. I hate HGTV and will not watch it. I’ve never seen an entire episode of CSI anything or Law & Order.

6. I hate spoilers for movies. I don’t want to hear about a movie at all before I see it except that it is “good.”

7. I do not like the malls and challenge any one of my friends to ever spot me at the mall.

8. I love comedy. I admire it almost too much.

9. John and I pretended that we had tickets to the big superbowl in Atlanta with the Titans. We walked right in and sat on the 50 yard line. Extra special game that day.

10. I love fiction, literature really.

11. I was on two game shows the year after I graduated college: Card Sharks & Scrabble.

12. I have belonged to the YMCA for maybe 18 years; I’ve never missed a workout(often just a walk) for 3 days in a row, except when I’ve had surgery.

13. I’ve been a Type I diabetic for 33 years. I’ve had 11 eye surgeries, and am now in desperate need of organ transplants. I also need another eye surgery!

14. John and I play games constantly; when we go absolutely anywhere and there is music playing, the game is on! Whoever names the artist of the song wins. (at a funeral he once leaned over and whispered “Amy Grant, One Zip.)

**15. I realized in my 20s that I have never had a full beer. I don’ t like the taste. Since then, I have kept up with it and still never had one. I do not drink.

16. Two of my life list goals I accomplished recently: my friend Joe took me Beekkeeping and I’ve gotten to go to dinner with a food critic. Other goals include: travel goals, writing a book goals, having family over to dinner more, commitment to charity, hiking more and further away.

17. I free fell from a plane when I was 19 and pulled my own shute. I wrote about it in the paper. When my mother heard she promptly threw up and rushed to Knoxville, father in tow.

18. I threw up in the lap of my first 2 prom dates from nervousness.

19. I once locked myself into a closet for 5 hours until rescue.

20. I wash my baggies and I have for along time.

21. I don’t have and I won’t have a credit card. Yet I am still able to rent cars and take out and payoff mortgages

22. I buy rental property and I’d like some more.

23. I got off of the school bus every afternoon at one of two grandmothers’ houses. We grew up 1 and 3 miles from them – excellent way of life!

24. Many many people have influenced me, but Conn Hamlett, my Latin and Bible teacher in High School, is one of the best examples of class & humor. There are many more, but he helped set off a life long curiosity about life. At the end of my senior year, we had a 1000 word English Vocab test. I still have the latin book with all of the English words in it.

25. I have fixed up many couples and I claim 8 marraiges because of my introductions.

PS> I know all 50 states in alphabetical order.

I have what I call Sports Anxiety about my potential failure at anything sports like. I do love to hike more than anything else (except reading) but I still get nervous every time I go with someone new.

I feel panicky when I cannot find my glucose monitor, even though the insulin pump attached to me is worth $5000 - $6000 more and much more critical. Maybe I don’t lose it as often because it is attached to me 99%!

I don't believe in Astrology at all. I believe in things like Astronomy. I am afraid that I like to shock my friends sometimes and claim it as Blashphemy!

I love nicknames. I love to play Scrabble.


*Special thanks to India Viva, The Thompsons, Latte man, Christine & Jacquie Lawing, who knew most of this crazy brag list. These were the folks responsible for the animal safaris. Special gratitude to Kim for being the animal spotter at Radnor & Warner Parks. Hey Phil, does this prove that I love animals?
**OK, my most intimate might question me on some of these. For example, the beer drinking. I appear drunk often. I am not. However, I did get absolutely sick wasted drunk a few times, maybe 5 in college. The thing about the beer, I do think it is true. We could ask the college boyfriend.
***I realize what a self-flattering, overly contrived concoction this must be to you. So here are some other truths: I spill alot of my food down my front as I eat. I'm not a good driver, so I actually pray over my car that I never hurt anyone. John is better than me at most everything. (that was hard to say) I am a narcissist. I never get my nails done and they always look awful; i pretend noone sees them. I gossip way too much. I don't practice what I preach. I get lonely! I over worry. I miss people so much that it hurts sometimes.

Letter to "Richard the Realtor"

Hey Richard. I keep thinking about you and your mom. Hope you are doing alll good. I have lots more of an opportunity to spend time on email and reading and especially thinking. I'm doing great but allthis extra time was forced down my throat! I didn't want to spend this time on the couch. And you know what? I am loving it in a way.



don't get me wrong, it has been one really crappy bitch to go to the clinic 2 and 3 times a week, up all night, and stuck at the house from either 5 hours to 8 hours everyday (we are working on getting to do this overnight, so my days will be free again soon). Don't even make me tell you about the daily bathroom situation.



i said i am loving it, but i want to tell you that the new feeling i feel about real estate and making money has changed. i have gone from years of being terrified about disability and not being able to support myself, to almost not worrying about it all. I was a real work aholic and am working on recovery. (i think it is impossible NOT to be a workaholic in real estate. But food aholics say the same thing about eating.)



I just say this because i hope you are not working too hard! I'm assuming you've learned all this long ago and are laughing right now from somewhere warm. It has just taken me a long time to figure it out. I havn'et quit; i'm still working. In fact, i've told noone in real estate except for a couple of close friends what I am doing! Turns out the anesthesiologist that I've had both times I had some dates with in college. He is interested in my upcoming listing in Richland.



I didn't mean to say all of this, but i was just thinking aobut your upcoming birthday and you and the passing of your dad. I admire and love you so much! thanks for all the help over the years and I hope more in the future. John and I want to go eat dinner with you and beth and richard sometime! or play scrabble or whatever. I probalby will come in sweat pants from the y. that is what i usually do.



Oh, happy birthday early dear. In case i forget!!!!

Another surgery

Last Thursday I had exploratory surgery to determine what was the cause of the slow dialysis drain.
This is a post summarizing what happened and why I am about to have the same surgery over again this Wednesday.

Without food and water for over 24 hours, I was naked with only a sheet and a crazy surgery hat on when the anesthesiologist i dated in college came over shaking his head. "I'm SO sorry to see this is you in here for surgery!" He had said the fist time I'd seen him, 13 weeks before when the catheter was originally placed.

The attending nurses had fluttered around him giggling and making eyes at me when they heard him say "We went to Dan Fogleberg concert togehter in college." Not looking my best, not that I need makeup or anything, ha, I managed to listen as he whispered to me the horrors of his recent divorce. This time I was ready for him. I think I've got a good woman to fix him up with AND I know the perfect house for him! I also saw another surgeon I know from high school and had a good ole time as they plugged me up to blood machines and stuck me for pre-surgery.

Anyhoo. They found that my fallopian tube had sucked into the catherter. Oh. That is what I've been feeling down there.

the Next 4 days were not fun. At first the dialysis came out in a brilliance of bloody speed! The blood looked scary but was supposedly normal. The speedy drain was how it was suppposed to be. We were elated.

Then dialysis almost stopped completely. the weekend was long. My nurse failed to meet me for 2 hours after what she told me. In the meantime I got my third (expensive) xray. While I was waiting for the nurse to finish her lunch at Mr Gatti's, I wrote a letter that included a list of all her infractions....the times she forgot to call my drugs into the pharmacy, the way she lost my bloodwork, the missed apts, the forgotten setup for xray...and guess what, When I got into see her, she dressed me down for 30 minutes. told me off like I was the most difficult person she ever had. I asked too many questions. I have too many doctor friends (thank God! Bruce & Howard & Utpal & Rosalie & Rebecca Bell have been invaluable and I cannot even express my gratitude). She yelled and I defended myself only.
\
Anyway. what a nightmare. John kept from dissolving into tears by diffusing the situation.
He offered a joke after the 20 minute lecture. Thank goodness for Latte.

The short story is repeat of surgery for the third time. Could have permanent catheter placement, could have to wait for use of this new catheter. And definitely back to no showers for 6 weeks after Wednesday's surgery. There is still possibility of emergency dialysis tomorrow, but it is going better tonight.

My BUN is critically high right now and everything depends on getting a transplant.

I have to go now, becuase luckily John and Phil will eat with me if i go now and they will make me laugh.

I'll be ok but I am frustrated! Thanks for reading all of my crazy posts. The best thing is that the book Kat gave me says that "Pain is inevitable; Suffering is optional." So far so good. I am loved. I get foot rubs from 2 friends. I get visits. Its a nice life.

Surgeon says FAT!

The question was:

WHAT IS BLOCKING THE CATHETER SO THAT THE FLOW IS RESTRICTED?

I am having another simple procedure on Thursday at Centennial Hospital (outpatient)…They are doing an exploratory lap to see what is wrong with the catheter. After over 12 weeks of trying and trying to get the dialysis “flow” to go better!(which includes standing on my head, hand over fist of daily laxatives, impulsive runs to the potty at all hours, and 8 hours/day of dialysis.) I am really excited that he has done this before. He predicts that some fat has overlapped the openings of the catheter and are sticking to it. When I asked him if I was having mini liposuction, he didn’’t really laugh but I almost got a smile out of him. My weight has dropped some due to the aforementioned laxatives, despite gorging of food! So he said No, not really a liposuction, but close.

So I will miss the book club! So sad!

But I will back in full force Friday and Saturday to show property and order contractors & hope for a transplant!!!!!! With your help, I am so happy these days! Please call John if you get a chance and give him a good joke or kudos. He has been a saint and a tireless helper & best friend.

Call me/praise Him!

Update...nighttime dialysis eludes me

HI Laura! Well, welcome to Nashville. I'm glad we found you a house.

I'm afraid I'm not a very good friend lately. Dialysis is like having a very needy baby. I am up all hours, sometimes rocking my body until the drain works better. i have been at the clinic so many days, then still doing dialysis for 4-8 hrs per day. I feel pretty darned good, my biggest problem is sitting still and canceling plans. Luckily, i have an extraordinary group of friends & family that put up with me and work around my horrible schedule.


and I still need to work and still love it, even though I am working mostly with hurt sellers. I just try to help.


I would love a visit anytime, esp in the evening because you can usually count on my having to do exchanges then. However, John and I go out to eat tons, mostly in our sweats after the gym....so there aren't too many places to go like that! ha We would love for you to join us for a big steaming bowl of Mexican pollo soupa at our little place. My goal is to see the last of the good movies in the next few weeks, so i will try and call you before we head out. The problem is, we never plan ahead, which is a pain for friends.

I committed to walk in the half marathon with Kim, who understands my fear and more importantly, my schedule.

This past week was incredibly long and Kat and Kim said the same thing. It must've been the inauguration and the absorption of so much energy and excitement. I was also very entertained by the entire event. However, it was a very disappointing week as the dialysis night time cycler failed to work for me. I cannot even go there now, because I tried it again last night and it alarmed every 5-15 minutes. I abandoned it around 10 and was up til late finishing a manual exchange. Latte further encourages me, even as he is bleary eyed and achy from lack of sleep.

I may be having procedure on Wed to explore my gut area - they need to see what is wrong and why this is so slow. Simple lap but it still will "slow" me down. it has been over 13 weeks of this!
i see the surgeon tomorrow & he will schedule. I also have a rescheduled nephrology appointment because for the 2nd time, the doc canceled our meeting (and they didn't call me! I'm afraid i have built a case against him and his nurse!) I also have some great new listings and some dear families I am helping. Most importantly, my hair needs color and my nails (as usual) look ragged. Since that is not important it gets pushed on. Oh, yes, my tags have expired now for 2 months. I've had offers of help; just trying to figure it all out. Sooo. all that is to say, this week seems kinda full!