Phase Two

Dear Viv,

Thanks so much for the New Year's card and the well-wishes! (I'm so glad this website kept reminding me this card came, I missed it the first time!) I sure am looking forward to a better year, even though I'm still in the throes (second of three hits) of Pluto square Moon AND Pluto square Venus. Fortunately I'll be done mid-end of 2009... yikes! Who knew it'd be so ROUGH?!

I've not been up to updating my blog lately, as I'm pretty much trying to stay in the present and get a bit on even keel for now before I start the process of getting a fistula (dialysis access on the arm instead of my chest catheter that takes 1-2 months to heal) and transplant (signing up at Stanford). Both are a bit scary to me, but I am determined to be aggressive here and get back to a more regular life.

Speaking of regular life, Anita and Meredith came and visited me after their Christmas stay in SF w/ Terry-Linn... wow, what a relief to see them! Like Los Angeles came to ME and I actually HAD a life again! I told them I felt like I could really be myself because so much of my energy and focus is being positive especially in front of my family (and their friends and kin) so they don't worry so much and I don't get sucked down the depression drain (easy to do when you're around all this medical crap). But Anita reminded me if I don't let my family know how I feel, that is really going to play into my lesson: Not being heard or seen in the family! Lessons SUCK, don't they?! -- eh, so we all got challenges in that area. LOL Mom and Dad get the daily ups and downs since I live here (I snap and growl sometimes -- it's not fun at this age to be living w/ the folks again...), but not so much everyone else... My one brother who I haven't seen for awhile was here with his family for the holidays asked me at our first family dinner in a long time about the process... and after telling everyone all the details once I walk into the dialysis center, matter of factly asked me asked how long I was going to have to be doing this for. Both my mom and I popped up: "Forever." By the look on his face, that might have given him a little bit of a shock/surprise.

Yesterday I had the worse (dialysis) treatment ever! I started getting hot and my eyes started getting weird and I got dizzy and nauseous... for the first time I actually had to call for a tech because I didn't know what was happening: "Zinnia, Zinnia!" Not too panicked, but very anxiety-ridden, and fortunately this young lady was as stable and strong as a horse and she let me grab on to her arm as she put me way on my back (elevated my legs so the blood went back to my head) as she cut the liquid removal and gave me some saline (via catheter, not by mouth). I didn't cry, but I really thought I had been extra careful with my food and liquid intake so I could avoid the excruciating leg cramps I got last week after Christmas...

I was more panicked and angry than anything, especially when she said it would still be 1-2 minutes after the saline before I would get some relief. Talk about cursing the high heavens! Fortunately, she was VERY VERY calming and pumped me with TONS of information as to what was happening and that was so comforting to me (yes, I still have a Hal 9000 for right hand head line!). And she was gentle and matter-of-fact to tell me that every treatment would be different as to cramping, symptoms, relief -- because of how much liquid they would take out, how much I'd consumed before... all kinds of numbers and parameters. It's just because I was new to it all, I don't know the signals I'm getting when stuff starts to hit the wall so I can prepare for the discomfort or warn them ahead of time so they can make adjustments and watch out for me before treatment starts... I swear Zinnia was a life-saver yesterday... and I just couldn't go straight home to sleep. I ended up joining my mom and dad at their daily after-mass-coffee-klatch-at-McDonald's with their six or seven friends (including a Catholic priest!) -- don't worry, I had my own breakfast with me and sipped on a half-cup of coffee (I have to stay COMPLIANT). I guess I ran out of any of my own resources, so off I went to get some love and laughs from these septo- and octogenarians!

So basically, the thing I have to remember to remember (!) is that even though I look good (it sure is easy to lose weight now... exercising starts next week) and happy (you know I'm a crazy optimist) -- this thing -- polycystic kidney disease (PKD) -- is chronic (which means I have to be ultra-aware of everything that's going on with me), and dialysis, though it makes me feel so much better (I sleep! I have energy!), is mother-fucking HARD on your body. Basically it's a g.d. machine doing what your body can't do normally -- your blood gets "washed" 13-15 times per session... can you IMAGINE that? I don't think your dishes or your laundry goes through that much cleaning at one time.

I will say, I do like where I'm getting dialysis though, DaVita Dialysis Center -- it's about six miles away and is considered a big center because there are 30 "chairs" there... oh, it was so depressing when I first in went to do my paperwork. They took me to the "room" so I could get my catheter dressing changed (they do that after every treatment, but I was nervous I'd gotten it wet and the worse thing that can happen is to get an infection as it's straight blood access to my heart)... and I swear I couldn't even control it, I wept like a baby. There are a zillion techs and a half-a-zillion RNs wandering around in scrubs and paper surgical robes, white masks and face shields... and all kinds of alarms and beeps going off, and funky (not bad) medical smells, like someone got a little too slap-happy with the PineSol, Febreeze and various other cleaning products. But the worse thing was that everyone looked like SICKOS... in blankets, hats, sunglasses, knocked out, in crappy clothes, curled up in some contorted fashion, OLD and WEAK and hooked up to tubes of blood. Good God, I thought... IS THIS WHAT MY LIFE IS GOING TO LOOK LIKE? Before I put on my own mask (you have to protect your catheter access from YOURSELF when they're changing the dressing) -- which I do at the last possible moment because I get claustrophobic with stuff on my face or lying flat on my back -- I told the nurse through the tears I was just going to have to get used to it because THIS SHIT IS GOING TO SAVE MY ASS. And I remember PKD is chronic... not terminal. So it's easy to remember to be grateful for advanced medical technology we have nowadays, you know? And anyhoo... I look like everyone else now. I mean, who looks good at 5:30 in the morning (except some of the nurses, who I tease have to get up at 3:00 to look as good as they do)? We're all just sleeping and watching TV anyway, and I certainly don't wear my finest for that!

Now that it's been a month and the holidays are over, I'm focused on trying to create some sort of life for myself while I'm here taking care of these medical issues. I did decide to go back to LA in January to GIVE UP MY APARTMENT... which I sadly thought was the last vestige of my independence and fought till the end to keep... Oh, to have a little piece of the planet that had my own junk in it! But the truth of the matter, that place is/was a dump, I've been there for 12 years and still never really moved in, and my parents didn't want to play $850 for rent plus utilities for a frickin' apartment just so I could feel "independent." (Completely understandable.) So I'll be there soon to get my crap out, and to move what little I want to keep to a tiny storage unit -- so my "turf" will be a little smaller, but at least I still have a foothold in LA! For what and why, I don't yet know...

I'm planning to stay up here until at least my parents 50th wedding anniversary party (July 11), a huge, formal shindig I'm planning here anyway, but in my head, I am OUTTA here after that... to where and to do what, I don't know... I guess when I do, I'll let everyone know! HAHA Right now (The Power of Now!), I'm just concentrating on keeping sane... find a support group, probably a shrink, some fun classes (in computers, design, and/or Tagalog), a trainer (yoga, etc) and yeah, maybe even find me some new friends! Talk about having phone relationships nowadays... I hear from some people (you know "who"!) in LA wonderfully EVERY DAY (if not a few times per!), and people I can call (on the east coast) at 6AM... but I saw Slumdog Millionaire by myself the other day (fab movie, by the way) and took myself out dinner, and while I do that in LA all the time... it just was... icky.

Yikes, I didn't think I was gonna go on and on here -- hope you don't mind I post this on my blog as an update! In the meantime, write me back soon and tell me how you (really!) are and how Lori is doing with her health too... I think of you two often... and empanadas and game nights too!

Talk soon, doll, and hope to see you in January--

Love,
Madley

PS. I loved reading Cojo's book, Glamour, Interrupted, about his own PKD and subsequent transplants because it was so HOLLYWOOD (and me!) and he worries about the same stuff I do (more on that later). Kinda hard living here in the 'burbs, ya know? LOL.

Wide Left Turn

On October 10th I went and got some lab work done to see if I qualified for a high blood pressure study at Impact Clinical Trials in Beverly Hills (yay for Craigslist!). Inspired by Robert Rodriguez, who got his $7,000 budget for El Mariachi at a research study -- well, why not?

October 13th I went back to start get the final okay and to collect my first $30 -- only to be told to get my ass to a doctor because I had some major renal disease going on -- and no, you don't get that $30 either.

What? Huh? What's renal disease? I pee fine and I don't hurt. What the fuck? How did my life take sucha wide left turn all of sudden?! When I said I wanted to "have fun with my body" -- this isn't at ALL what I was thinking!

Tonight I finally sat down and wrote one of my dearest friends an update note -- which pretty much explains everything up to right now.

What a fucking trip.

You've got Madree Mail! (hehehe)

Okay, tell me you're not smiling!

In a nutshell -- for now -- I need to start on dialysis 3x week (3-5 hours each session) because my mother fucking kidneys suck. (OOPS, did I say that? I'm sure there's something metaphysically wrong with that sentence, but I also know I's gotta be me, and I's a swear-er! haha)

I've been diagnosed with congenital polycystic kidney disease -- emphasis on the CONGENITAL! which means it's not self-inflicted which I'm thrilled about actually. I didn't do anything bad to myself! I mean I could be in better health by being less obese, but I didn't drink myself to these cysts -- I'm just a "cyst-prone" gal -- evidence that since I've had many issues with ovarian cysts (that fortunately just went away). Apparently it's runs in my family, though no one right now has it... and it just "appears" with no symptoms because slowly you're kidneys were going to degenerate. I liken it to be bald: you don't know you're going to be bald when you're in your 20s-30s, but if you've got that gene, you're just gonna get it! (Or lose it, as the case may be.)

I have to say, though... everyone has been telling me (and I agree with them) that my trying out for this clinical trial re: high blood pressure has been a frickin' BLESSING. Remember, I came back from Vermont with this newfound commitment to "have fun with my body" because I didn't like the "old and lousy" way I was feeling hanging out with this cool 29-year-old (okay, I admit my vanity!) -- and then when I let Diane's EMT son take my blood pressure and saw the panic on his face -- I knew that's where I needed to start. So why not get paid to take BP meds?

If I hadn't gotten that blood test there and got referred to a doctor... and if my parents hadn't insisted I come up to see one here -- well, I asked the doc here what would've happened to me, especially since I was in no pain and no real "symptoms" but lethargy/fatigue (no iron), leg cramps and achy knees (uric acid in joints). She said I'd be in an emergency room somewhere because I couldn't get up -- or I'd passed out and gotten in an accident of some sort... and had emergency dialysis right away because the toxins would've built up so much...

If my doctor had her druthers she would've stuck a catheter in me last week and started me right away because these things (both of them) are only functioning at 8%. Yeah, you heard that right -- 8%. But I convinced her I needed to go back to LA to get some stuff done -- paperwork, for sure, but mostly I need to see my PEEPS -- and you're one of them! -- and some healers and some MD specialists -- and then next week, I'll start. I'm trying to work through the idea of surgery and this THING in my arm (where they plug in to do the blood swap)... not quite there yet, you know?

An icky thing is though -- because I'm waiting for Medi-Cal to kick in and I can't do dialysis on an outpatient basis until it DOES kick in (insurance), the hospital is keeping me there for 2-3 weeks! AACKK - an inmate! LOL I'm going to go crazy! I'm trying to find a nice way to BEG my parents for a laptop because I will go nuts... I almost lost it there for three days, and the poached fish the last lunch I had there tasted like FUCKING LEATHER! How do you fuck fish up like that, anyhow?

Good thing I have positive thinking friends -- who expect the next best play/novel/musical or SOMETHING to come out of me at that point (a writer's retreat!). And Jeffrey teased me that the hospital will end being like my Cheers -- because I'll be wandering around all over the place when I'm not doing the blood-washing thing. I'll give my cell number to all the RNs (I'll put it on the little dry-erase board they put in front of our beds) and tell them to call me in the library or cafeteria or what have you when I have guests or a pill to take! HAHHAAH And everyone in the Gift Shop to Admitting to Security will know that Crazy Lady from LA walking around with a camera and laptop...

After I get out, I should be used to life with dialysis and be able to leave and get care in LA... although the doc recommends I stay for a little while for the support of my family. I'll cross that bridge when I get there -- it's ironic that the day before I found out the diagnosis I had just FIRMLY TOLD MY MOTHER, that I was DEFINITELY not going to be moving here in January (which was the end of my "deal") with them. Hopefully that will be the case and I'll be back in LA creating a better, stronger life for myself...

And yes, in the meantime, I'm applying for long-term disability -- and I'll be putting myself on a kidney donor list. Apparently I'm considered "young and strong" and a fantastic candidate for either living or "not living" donation -- and from the research I've done, when you get one that "sticks" it's pretty much life as usual. You're taking anti-rejection drugs all the time... but it's a zillion times better than a life of getting dialysis. Family is supposed to be the best possible matches... but I'm not going there yet. I will say I've had some offers from some incredible souls though... but like I said... I can't manage that far ahead of time yet. I'm a little freaked out about where I am TODAY.

By today, BTW, I mean I'm on some mean high-blood pressure and cholesterol meds, iron and calcium supplements and a boring-ass renal diet (low-sodium, potassium and phosphorous, etc.) Thank goodness I don't have diabetes because a little taste of sugar helps now and then. BTW, it's nice to have my energy back a little since coming out of the hospital...I didn't realize how weak I was and how little an appetite I had. Appetite isn't quite back, but hey, that's a nice after-effect! But things don't taste all that great... food's just... food. And I'm lucky right now to have Mom cooking it... I know she's so worried sick about me I bet she and my dad will be on this funky renal diet soon too! LOL

So the nutshell end -- I'm doing okay. My spirits are mostly high -- except when they're not... and then I let it all hang out to whichever wonderful friend happens to be on the other end of the line. Sometimes in the middle of the night... that's the World Ministry of Prayer... and that's good enough for me!

BTW, did I tell you what "kidney problems" are in the Louise Hay You Can Heal Your Life book?

Probable Cause: Criticism, disappointment, failure. Shame. Reacting like a little kid. !!!!!!!!!!!!!!!!!

The New Thought Pattern: Divine right action is always taking place in my life. Only good comes from each experience. It is safe to grow up.

I know!

And on that note (la!)... are we still on for Sunday?! Then we can catch up with YOU. My crap can bore me to tears!

Lemme know -- love ya always,

Madley