On second thought, go ahead and stare..

Just a quick rant from some deep thinking done at Dialysis on Monday. I know it has been months since I last wrote, but the wifi has been dead at davita. we all know, by now, the last thing I want to do when I come home from dialysis issss spend a few hours blogging about dialysis.
I promise an actual update is on it's way!




Today(1/3/2011) marks my 125th dialysis treatment to date. It seems like only yesterday I was in the recovery room in the most pain imagineable, still not knowing what to expect. Although I've become an old pro, it hasn't gotten any easier with time. It still makes me sick, and it's still the slowest ten hours of my week. It's all I can think about and most of what I worry about in a typical day. Some days I feel like wearing a sign on my chest with bullet points to remind people how fucked up and sickly I am. In fact, I might just be onto something.. Maybe if I had a list of my ailments next to the boob tube it would prevent some of the foul stares I get several times a day. I've got some inside info for those of you that like to stare at people because they're different from you.. ready? WHEN YOU STARE, I CAN SEE YOU LOOKING. And when you squinch up your face in horror or disgust at the endless possibilities of the cause of my hideously offensive deformity, I want to just slap the shit out of you and call your mother to insult her parenting skills. Yes, I have medical issues. Yes, I have scars and bandages etc. on various parts of my body. And yes! It TOTALLY SUCKS! although I'm partially bionic and completely medically complicated, I'm still human and I still deserve some descretion when you are staring at the parts of me I am most self conscious of. Seriously, if you are curoius about my bandage and obvious boob tube, ask me about it. ALL YOU GOTTA DO IS ASK BROS. It cannot be too foreign of a concept because, from time to time there are some partially decent douchebags that manage to muster up the strength to say "OH RAD IS THAT A NEW TAT?" to which I typically respond to based on a couple of factors..

- Whether or not I have time to answer your dipshit questions like 'did it hurt!?'
- If you seem to be super jazzed off it being a tattoo, it sucks to let you down with my usual depressing explination.
- My mood.
- Whether or not it mattered if you knew the truth.

I'll either say, 'actually, no. I'm on dialysis and waiting for a kidney transplant' or, 'yeah, awesome tattoo, but this is my last bandage so I dont want to peel the tape off' I usually pair that last one with a made up tattoo concept, some sort of weird animal to tattoo there or something.

Really, whether or not you point and laugh, stare til your eyes fall out, or nervously avoid looking at the things that make me unique, makes no difference to me. but I hope you stop doing it to anyone else, I'm pretty sure I'm the only one that can handle it all (;

Losing Momentum.

I am slowing down. My body can no longer keep up. The first few months of Dialysis were not that difficult, compared to most you could say that in the beginning it was easy. I am running out of steam. Losing gumption? I have straight run out of STAMINA. I now sleep, most of the day. I can no longer do anything remotely physical on my D-days. It's really bummin me, to think that I am now feeling EVEN WORSE.

And as conditions continue to decline, so does the sympathy. It seems as I start feeling shitty-er, people are expecting more from me and cuttin' me a lot less slack. I don't like to use my illness as an excuse, but unfortunately a lot of people forget I am sick. My entire life I have gotten shit, because I don't "look sick." Sometimes I think my own Dad even forgets that I am not well. He is frequently frustrated when he comes home and I have spent most of the day writhing in pain on the couch, almost as if he doesn't remember the 'writhing in pain' part.

I. Am. Grumpy. Another side effect of this disease! When you feel like a 20 year old stuck inside a 97 year old woman's body, irritability is sure to in sue. If I snap at you, that's why. I'm not angry and I don't enjoy treating people poorly, I am just sick and fucking tired of feeling this BAD all the fucking time. Does the cursing help to demonstrate my point? Because me being grumpy is NOT about YOU, it's about ME. And I do not care, anymore, if you had a bad day at work, or you broke a nail. All I care about is not throwing up at any particular time of the day. (okay, that's kinda a lie, I really do care about the individual hardships of those around me, I'd just appreciate having some thought put into what you are complaining about)

Another factor in me slowing down, is the news that they are kinda sorta forcing me to make a decision as to what I'm going to do from here as far as my access is concerned. I have made up my mind, but wont get my way. I don't have enough in me to work as hard as Peritoneal Dialysis is requesting, but the most awful thing I could imagine would have to be a FISTULA. boo. But, this catheter is just a walking infection risk, and I gotta get it out of me, sooo this afternoon I go in to see a vascular access surgeon to figure the best arm to use and schedule the operation, talk about bummed! but at leeast I'll be able to shower in, like, three months!

There's no such thing as a Dialysis vacation.

Last week I decided to get away. With one week left before school starts, and a general hate for my small suburban town, and most of it's occupants, Southern California was the place to be. A sweet family that has part way adopted me in the kindest way possible, informed me that if I were to get a dialysis transfer to San Diego they would buy my plane ticket. THEY ARE PAYING FOR MY VACATION AND WE ARE NOT EVEN RELATED. These people have already opened their hearts and their home and their lives to me, I am already like a daughter to them. They are so kind, and I am thankful every day that I have Carol, Paul, Daniel and William in my life.

After filing the necessary paperwork, and doing another TB test, I received the OK to dialize down south, and Carol bought my ticket! That Tuesday morning I left Oakland airport, knowing I would not have to worry about my medical troubles for at least another 30 hours, and for that I was thankful as well.

The weather was beautiful and my days were spent with old friends I hadn't seen for years, new friends that I became quite fond of, generous hosts, lounging by the pool, shopping in La Jolla, gourmet cookies shaped like whales and kittens, delicious sushi, and last but CERTAINLY NOT LEAST, debatably one of my favorite days of the year, SEA WORLD. Where Carol and I got to experience the "soak zone," coo over perty baby sea life, and I almost pee'd myself like a thousand times out of pure excitement.



That entire week there were only two times I experienced any kind of stress or dysfunction, save the obvious overload of family togetherness, Wednesday and Friday. Yep! Go figure Dialysis would worm it's way in and fuck everything up.

WEDNESDAY: The family had a Padres game, and I had Dialysis, I wasn't too hurt, most baseball games are pretty much the same and I can go to those here, but boy was it inconvenient. After having the whole car yell and grumble as we tried to locate the San Ysidro Dialysis facility on 30th street, downtown, it became more and more apparent that I may be looking for a facility that didn't exist. So, I called Davita, lo and behold! there are two 30th streets in San Diego. Aaaand the mix up was not even our fault! Imagine that. They have the wrong address plotted on the map and it shows that San Ysidro is downtown and closest to La Jolla. AWESOME. after driving another 40 minutes, I arrived at San Ysidro. Right at the Border, below Chula Vista. Really? This kind of luck is special, and I am the only one "blessed" with it, because I'm probably the only one that can handle it.

Fortunately, we managed to get there ALMOST on time and although Carol was about to kick ass and take names, and I was mostly just nervous about being in a different facility at a different time of day, they were nice and apologized, and then they hooked me up to the machine and sent Carol and the fam on their way to the baseball game! I was only terrified and alone for a short time before a handsome young gentleman friend of mine who lives in San Diego, came to my rescue and protected me from the crazies in San Ysidro. We asked them nicely to transfer us to the other dialysis facility for our last day in SD and they called over and imidiately obliged!

The second facility was closer, and seemingly less stressful to drive to and it was all planned out who would drive, and when we would leave. Until I went to take a nap and left three young "adult" males in-charge of making sure I woke up on time to leave! Needless to say we left 20 minutes late, didn't know where we were going (to drop someone off and pick up actual directions) and I was still half in nap-state. Well, shit.

Eventually, we found our way and I was only fashionably late. Dializing until 10:30pm was pretty unfortunate, but most things related to Dialysis are unfortunate.

We belong here, together, none of us deserve to be sick.

Always leave enough time in your life to do something that makes you happy, satisfied, even joyous. That has more of an effect on well-being than any other single factor.

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.

peritoneal vs. hemo with a fistula

The tunnel catheter I currently have placed in my juggular is apparently somewhat of a high risk for blood infections. Go figure. the "tunnel" part of my spiffy cath is for more long-term dialysis care, as it is thought to make infection less likely. There are very few catheders at my dialysis center, because catheders are for new patients that had no warning, and needed dialysis right away. I had no warning, I needed sialysis right away. On my very first day of "D" I started hearing the question P.D. or Fistula? In all honesty I didnt even really know what that meant, but I knew I did not want a fistula. Because the tunnel cath IS temporary, I am being forced with making a quick decision.

A fistula would be the "easiest" way to go. But it is most unsightly.

This is a very nice fistula, they can get a lot uglier. To create a fistula, a vascular surgeon joins an artery and a vein together through anastomosis. Since this bypasses the capillaries, blood flows rapidly through the fistula. It is usually placed on the non-dominant arm. This for me means my left, and although I would prefer to have it on my upper arm, I have a tattoo on my upper left that I am quite proud of and do not want to destroy. This is really what I would like to do, but I have enough unsightly scars, and I dont think I could handle a fistula, too.

My next option, gives me a TON more freedom, but with freedom comes an influx of responsibilty, as always. The P.d. tube is much more hidden than my current cath and a fistula.

Peritoneal dialysis uses a natural filter inside your body—the lining of your belly, called the peritoneal membrane—to remove wastes and extra fluid from your body. The dialysis fluid fills the belly and pulls out extra minerals and fluids from the bloodstream, these wastes then drain out of the body along with the dialysis fluid into a collection bag. P.d. is done at home, so they send you a months worth of supplies (tons of shit) and you have to store it and you take classes and you learn what to do. it's done by hand so I can pack up a car load of "the shit" anytime and go wherever I'd like, and they will ship supplies pretty much anywhere I want to travel. With this I am also allowed to eat or drink more, and might FINALLY be able to shower (I have not showered since March 17th, and counting.) after mastering the art of P.d. I may be a candidate for a night time "cycler", which dializes overnight, and grants me even more freedom.

Sounds like an easy choice, but my reason is more complex than which is "easier." I like hemo dialysis, I enjoy the people here, techs and patients alike. And I like that I pack up in the morning, dialize, pack up again, and I get to leave all the medical stuff there and still have one place I can kindof "escape." I barely even take pills now so I dont have much medical shit at home. I like it that way. With a fistula that can continue, and with P.d. it's in my room, it's in my closet, it's in my car. It's all over my life.

And it seems even writing this all out has not gotten me any closer to a decision :/