Sunday, February 08, 2009

Friday, February 06, 2009


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...



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.

Reblog this post [with Zemanta]