Why is it all worth it?

Since starting this blog, my oh-so small support system has grown. I depend heavily on those that are close to me to get me to appointments, drive me to dialysis, take me in for the occasional broken arm or other various non-kidney injury. I literally am living for those that help to take care of me. It's not hard to notice that as I get more sick, or the longer I remain sick, the 'bandwagon friends' start dropping like flies. This is a turbulant disease that really helps me to see who my number one fans are. Just as I stared to feel like I no longer had support from some of the most important people in my life, I got the most excellent dose of faith, hope, luck, and love.


From 2002-2008, every summer I had the most wonderful experiences that were, hands down, my 'saving grace,' if you will. Every July, Saint Dorothy's Rest opens it's doors to the 'critically ill' (although I don't agree with the term, it's somewhat accurate) and allows Transplant patients just like me to attend an entire week of summer camp with little-to-no cost to the children/families. Being at Health Camp is almost like being in another state or on another planet. For 5 days I got to live in a place where we look at you funny if you AREN'T sick. A place where, reguardless of your 'boob tubes,' gnarly scars, or medication side effects, you can be yourself and everybody understands more than anyone at home ever will.

Unfortunately, as I'm continuing to find out little by little as I "grow up," all good things must come to an end. In 2008 I had to say goodbye to the redwoods, and the Farmer Lodge, and my friends from all over California and out of state. Not just friends, but family. Empathy is one thing, but you will never be able to understand my attitude or feelings until you are right there with me, taking the meds, taking the scars, and managing to deal. I still have not made it back to the redwoods, but once in a blue moon, I get to see my friends.

Tuesday night, Molly the Heart transplant drove down to Livermore from Roseville, Wednesday we drove to SFO to pick up Annie the Kidney who flew in from Nebraska and Raven the liver from Oregon. Today Amanda the Liver is driving in from Fresno, Saturday we are all going to Stanford to pick up Trista the Heart as she gets home from her last year at Saint Dot's, and Sunday Lexi the Kidney from Los Gatos and Jimmy the Kidney from Union City are coming out as well and we're all having a big barbeque. I feel at peace. I belong. I am confident and happy.

It almost makes me forget I'm sick. It almost makes me forget the people staring at me. It almost makes me forget all this crap. Almost.

Lefty's Revenge

In my "Dialysis bl0g" I wrote about some days being better than other.
"With dialysis there are good days and bad days. The bad aren't too bad, and the good aren't great."
I don't think that was as true when I first wrote it as it is now.
(oh great I'm already quoting myself)

On an emotional level, the big D has got me a little.. frazzled, to say the least. It is something I have to do every Monday, Wednesday, and Friday. I can't call in sick, reschedule, or make up an excuse to not go in the Monday after a holiday. No long weekends in Tahoe with friends, no watching the fireworks on rooftops in Oakland, and no sunday quests for an adventure in San Francisco. Reguardless of my physical limitations, missing these big events just for Dialysis is getting tough. Instead I sit there, struggling to feel stong enough to get up off the couch and move to my bed. Dialysis and I could use a vacation. Some time apart from this life-sucking husband would be just peachy. But that can't happen. We're joined at the hip, unfortunately.

Each day at Dialysis I weigh myself on their fancy huge scale, and they see how much fluid I have gained (real talk: I pee one time a day, and that's it) based on comparing that to my 'dry weight.' (how much I usually weigh when I leave D) My time on the machine is not only made to filter all of my blood through my small plastic kidney, but they also take off the extra water weight. Taking off 2-5 pounds of water weight over the course of 3.5 hours is NOT as easy on your body as it sounds.


The physical effects on my body are becoming more and more difficult to adjust to. It's like the fatigue is building up, I am finding it impossible to not sleep through Dialysis, (why my blogs have been trickling through slowly) and on my off-duty days, I am finding it impossible to wake up before 3pm. Currently, my head is POUNDING and it wont stop for hours, my legs are already starting to ache and probably wont stop all week. I am constantly uncomfortable, sitting, standing, sleeping. And on days where I am free to go on an adventure or enjoy nature, I'm too exauseted to walk ten feet and sit on a fucking bench.

This is especially difficult, because no matter how sick I have gotten, I have always had my same positive affect and smile, and you can't exactly tell by looking at a Kidney that they are sick. The validity of my illness is questioned everyday. From asshole Mr. Wooten in middle school P.E. class, to JUDGES in COURTS, to every single person that has ever employed me, to friends that "don't understand why I cant just do it."

I'm sorry. I'm trying the best I can, there is just a lot less of me to go around these days. I want to do everything my friends do, and I want go camping, I want to take a break, I want to call in sick to Dialysis, I want to go swimming, and I want to be able to take care of everyone that depends on me. But I'm weak, and I know it.

Stop reminding me, it sucks.