Mad's Mad World

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.