The Proposal

Cute movie... and funny, I actually believed Ryan Reynolds was a cool guy (as in "not a jerk").

Much of the movie was shot in Alaska... which was the second time Alaska came up for me today. I've been looking for SOME PLACE TO GO, and SOMETHING TO DO to veg out after this July 11th event of my parents.

Mom suggested Hawaii, "because if we go there, you won't have to pay for anything." I quite nicely told her the vacation was to get away FROM THEM. With a smile, of course.

Another friend came back from Mystic, CT and I looked at the blue water photos from the Inn at Mystic -- such a deal for midweek, but I'd have to haul ass across the country. Don't know if I have energy for that.

Mystic made me think of the water though -- and Lake Tahoe. Thought maybe it would be the right speed for me to go by myself for awhile -- a spa sounds incredible -- and maybe have a friend or two join me later after I decompress?

But then my Physician's Asst at dialysis today said there are cruises that have dialysis available on them: I looked up Dialysis at Sea and a cruise around Alaska came up in July! That might be the answer.

It just looks so peaceful and maybe a good place for an old single gal like me to take it easy. I'll let you know.

PS I had to double up on my anti-depressants today, and yes, it's getting that bad.

I F*CKING HATE DIALYSIS

Yes, that's ALL CAPS, no picture, no smiley-faces.

(A friend of mine asked me what percentage of time did I spend being depressed about this disease and I said only 10% because I had to make sure I stayed positive when I'm surrounded by so much illness. He agreed that was a good assessment and congratulated me. But not today, not right now.)

I knew it was going to be hard coming back from Los Angeles... but I didn't think I'd be as pissed off and upset as I am. It's be 5 days and 3 dialysis sessions back in the Bay Area, AND I HATE THIS SHIT!

Last week I was so busy visiting friends, eating food at restaurants I've missed, driving around in sunshine with energy I haven't had in two months, no backache getting out of chairs, beds or cars, no huffing and puffing up stairs...

I ACTUALLY FELT NORMAL AGAIN. I didn't want to talk about dialysis and I loved soaking up the compliments:

"You look great!" "What a terrific haircut!" "Wow, have you lost weight!"

But this week... my phosphorus is way up. My blood pressure dropped to 60/35 on Wed and I was close to passing out, and I had the worse stomachache ever and they had to add 1000 saline back into me to get my BP up. Today, I poked with both a Hepatitis B shot and TB screening, and Sunday I have to do a 24-hour urine collection to see how my kidneys are functioning and if I have sit in that god damn chair longer.

I also found out the transplant program in Stanford is slow as molasses -- my first two meetings are end of February and end of March. WHY IS THIS TAKING SO LONG?! Isn't there someone I can PAY for this NOW?! I was not expecting this at all... I'd been warned that "transplants can take 3-5 years to be on a list so don't expect it to be on your time" BUT TO GET A FUCKING APPOINTMENT?

And then I find out how little I get from SSI -- and I even have a premium to pay for MediCare. Did you know that? I didn't know that! UGH. Talk about feeling absolutely helpless.

Lastly... I CAN'T SLEEP. I don't know if it's because I'm not getting enough dialysis or it's completely emotional... but I overslept twice through my alarm. Wednesday I made an LA friend stay on the phone with me until 3:15 am because I was so anxious and anxiety-ridden I was pacing the house trying to that "coked-up feeling" out of my system by sweating or something. And I was so upset that I didn't know any 24-hour places/diners I could go to like I know in LA...

I FEEL SO TRAPPED AND I HATE IT!

I HATE IT I HATE IT HATE IT...

Oh dear God, please don't think I'm not grateful for all the medical advances, and friends and family and all because I so AM, and really don't want to drag anyone down. And I know there's some reason for me to be going through this bullshit crap... I just don't know why yet AND IT SUCKS.

The Pity Pot Sucks

I was on the phone Sunday night (yesterday morning) until 3:15 am I didn't get to sleep until around 4:00 for my "nap" before I leave for dialysis at 5:20. Lest this sounds miserable, it's really has been quite the habit for me since starting this whole rigmarole. But this time I turned off the first of the cell phone alarms instead letting all three ring... and I overslept for the first time and didn't get to the clinic until 6:05. UGH.

It was downhill after that.

I weighed in at 104.9 kg -- my lowest weight ever, and even after a very thirsty weekend. Woohoo, I thought -- I'm losing real weight here, yeah, not just water! Now that I was given a new dry weight of 103.5, I'm figuring I only have to lose 1400 cc this session and won't have to go over the dreaded 2000 or 2500 where I've always started cramping. So 1400 plus the 500 they add for saline in the tubes (don't ask me how that works), the total they should've plugged in was 1900. Good job, Madley!

But the RN (whose name I've conveniently forgot today) heard some "crackling" in my lungs -- a new thing for me -- which means even though there's no swelling in the ankles, there's f*cking liquid in my lungs and they need to take that shit out. UGH.

So after I get do my standing blood pressure (which is always high to me, today 185/103) but they say it goes down after dialysis so they don't worry about it, I apologize for oversleeping and being late.

"Well, we might have to cut your time then." (Someone sits in my chair for second shift.)

Ooh, there's a consequence for you, and I make a mental note never to do that again and risk my Compliancy. A shocking grown-up thought.

But then Devil Nurse adds, "Can we do 2500? Let's just try it."

No way, I say and tell her I'm afraid of those stinking leg cramps (and I get it already, I don't need more punishment!)

She says, okay, how about we try 2300, just to get rid of that water, okay?"

My eyeballs are huge and glowing: "All right," I say. "But if I start to cramp, I'm gonna start screaming."

So off we go... I put the TV on ABC (because there's nothing else to watch on the crap stations in the clinic at 6:00 am) and curl up with my DaVita blanket. After giving Dennis, the cute ex-LA tech guy a copy of Salo-Salo and we laugh about how white boy Travis' can speak Tagalog better than either us "natives" -- I fall asleep for my treatment. Funny, I never thought I'd be able to do that, and I always come armed with a backpack full of magazines, a DVD player, DVDs and my cell phone, but now I sleep really well there. I always like to rest when there's noise and others around -- I tell people it's like taking a three-hour flight somewhere and you just can't leave your seat...

I wake up about 30 minutes before the end of treatment and make an early call to girlfriend who's having some medical issues of her own... when all of a sudden my eyes start freaking out and the TV screen looks weird.

"Oh no, something's happening," I tell her, and promise to call her back. "Dennis, Dennis...!" and he comes over from another patient to turn off the fluid removal on machine.

"Blood pressure, blood pressure," I say kinda of panicky, and he presses the BP button.

By the time the BP machine has finished compressing my arm, I'm peeling off my blanket and coat. I look at the machine: 80/45 -- and the 45 is in RED.

"Dennis, Dennis... please... saline, please." I know it takes 2-3 minutes for relief and I'm trying to be calm but now I'm nauseous and trying to fan myself with my hands. Dennis comes over quickly and gives me 200 cc saline back -- I can tell he's just as alarmed at that BP number.

My eyes are welling up -- I can't keep myself calm. Dennis throws me a little sweet sarcasm: "And you worried about your blood pressure being too high."

I smile... but I can't wait. "More please, more saline please." ( What am I, fucking Oliver?) He gives me more and at this point I don't give a shit if I get it ALL back and miss my dry weight altogether. FILL ME THE FUCK UP.

Eventually, the BP rises (100/65) and I'm no longer dizzy or sick. I get up to do my standing BP, and go to scale again: 103.7.

I go back to my chair and Devil Nurse asks me for my weight -- and if I could've shot her an even more "devilly" look, I think I did, with the underlying thought of: Take THAT, you bitch. I'm not listening to your shit again! You guys tell us to be in charge, to tell you what we can or can't tolerate -- and surprisingly enough, I actually KNEW how to take care of myself this time. I just didn't listen.

Well fuck that, I'm not letting that happen again. I'd rather err on not enough...

Which reminds me, the PA (Physician's Assistant) Nga (that's a Vietnamese name if I ever heard one) told me if my clearance isn't higher (which they can't raise manually because I'm on catheter instead of a fistula), I may have to stay for 15 more minutes longer per treatment. I asked if there's anything on my end I can do to prevent that... she said no, it's numbers I can't do anything about at all.

So I said okay. No fight, no emotion. Just acceptance -- this is my life today.

And then I was pretty much wiped. Went again to see the old folks at McDonald's for a half cup of coffee and a half Egg McMuffin. All day I tried to drink more bitter, sour things so I wouldn't want more liquid. I love all my juices, but unsweetened ice tea water w/ lemon quenches my thirst more... and I now I drink it in a wine glass so I don't feel so deprived. I SWEAR I hate this liquid restriction the most... the food I can deal with, but for someone who used to drink tons of water all the time... it's miserable.

Then all I did was sleep, watch reality TV and talk for a few minutes on the phone. Couldn't get on the computer to read emails or anything... I don't know if I was comforting myself or letting myself dive into pathetic pity-dom...

So sorry if I haven't answered your emails yet. I'm on it today, with lots of errands and tasks to do before Travis gets here and we leave for LA (my parents won't let me drive up there by myself and I need my car there!), and to get ready for the whole moving process itself... yuck. I'm sure I'll have more to write about at some point... til now, I'll let the celebrations for Our New President ride me over the hump.

The Big D

All right -- the right side isn't my BEST side... but does anyone really HAVE a best side at 5:45 in the morning? LOL

I brought my niece's digital camera to document "a typical dialysis morning" (ah, so creative!), but when Dennis, the cute ex-LA tech guy pulled out the camera, I'd burned up the battery, darn it! (Sorry, Steph.) But I couldn't resist having him take one with my camera phone... (come on, one flirts where one can ;)

This is me in the chair/leather-bark-a-lounger, hooked up from my chest catheter to my "kidney" -- it's that pink plastic tubular thing on the right filled with a zillion coffee-like filters connected to both dark maroon (!) and white (saline) tubes.

It's funny -- I'm not queasy about looking at everybody's the tubes of warm blood (yeah, I know it's warm, because they clip the tubing to your shirt sleeve), but I still haven't seen my open "access," i.e. the catheter without the bandages. And even though there's all this red stuff floating around, I'm okay... except one time a few drops got on the white cloth they pin under the tubing near your chest -- and I saw it and I totally freaked out: "Get it off, get it off!"

Somehow I couldn't stomach seeing it that way, uncontained... it looked like an accident, yikes!

More details to come (and with more gory, gross photos too HAHAHA) --