Friday, November 14, 2008

Wide Left Turn

In for testing at Washington Hospital, FremontOn 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,

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