Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!




Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Friday, January 18, 2013

Water...

Water.  Water is all I think about.  I need it so bad.  I see people leaving their beautiful water with ice in restaurants.  They aren't drinking it.  They are mostly drinking soft drinks.  Things that don't quench thirst and add sodium and in most cases chemicals to their bodies, and empty calories to their diets.  I see people who clearly don't need the extra calories drinking Coke or Pepsi, and people who think drinking diet soft drinks will fill them up, but they are adding caffeine and sodium which makes them thirstier.  Diet coke doesn't make you lose weight, it makes you gain weight in the long run.

Water, though.  It's so wonderful.  I can't drink it now.  I am allowed 32 ounces of fluid a day.  Think about that.  That means if I eat soup, use a glass of water to take pills, drink a small coffee in the morning, and eat any kind of fruit or vegetables that are juicy like cucumbers, apples, oranges, or tomatoes, I don't get to drink water AT ALL in a day.  So I have to limit my intake of fruit and vegetables, limit foods like soups (which are high in sodium which make you thirsty anyway), limit things like popsicles and jello, or snacky things like popcorn or chips which generally contain salt that will make me want to drink more.

I get so jealous when I see people drinking anything.  Last weekend, I had a bunch of drinks.  I drank three (or four...or five) rum and cokes in one long evening of drinking at a party.  I don't pee much anymore, because my kidney can't do its job.  I actually can't pee more than a few trickles here and there.  Sorry if that's gross to talk about but I am pretty sure if you are still reading this entry, you are a bit desensitized by now.  I get rid of fluid with my dialysis machine.  One of its functions is to suck fluid off of me while it is filtering my blood.  So by the end of that night of four (or more) drinks, I hadn't peed AT ALL.  If you can imagine drinking alcohol without having to pee, you would gain all that liquid into your cells.  By the end of the night, I had more than two liters of fluid on my body, slushing around my tissues.

What happens then is your blood pressure goes up.  This can be potentially dangerous, of course, if I don't get the water off.  And even though I have all this water in my tissues, I am thirsty.  The more water I have on me, the more thirsty I get.  Because I am not getting the water to run through me and flushing my system like all of you, taking all the toxins with it.  Alcohol still dehydrates me.  But the water goes in places that are unhelpful. making my body want more water.  Two liters of water weigh 4.4 pounds.  So gaining five pounds in a few hours is enough to drive a woman crazy ("This skirt fit me perfectly when I got dressed tonight, I swear!")  Yes, I do get to lose five pounds in a few hours as well, which is awesome.  But I use the scale to tell me how much water to pull when I set the machine, as if I wasn't obsessed with my weight already.  Sometimes I push it to the limit and try to remove as much as possible so that I can be ahead on the next treatment.  But it doesn't work that way.  If I am dry I have low blood pressure and I get lightheaded.  My pulse is raised and I get really weak, with muscle cramps.  Not just like soreness, I mean cramps.  Like charlie horses EVERYWHERE.  It's awful.  And bananas don't help that much this time.

I get obsessed with ice.  I am an ice snob.  Since I don't get to have much, I will go places where I know they serve that clear ice instead of cloudy ice.  Many restaurants have clear ice, but some don't.  I need to drink it from a glass I can see through, preferably a clear glass cup.  McDonalds has clear ice, so does Wendy's and IHOP surprisingly.  Clear ice is made from a machine that pours water over freezing cold water containers constantly.  It has to moving constantly or you will get air particles in it which causes it to look cloudy.  That's why most refrigerators have cloudy ice.  I have been told that if you boil water, let it cool, then boil it again, then freeze it it will be clear, but I haven't tried this yet.  There is just nothing like a cool glass of ice water with clear ice cubes floating at the top of it.  And people just push it aside and forget about it most times.  What. A. Travesty.

The first thing I am going to do when I get this transplant is drink water all day.  I am going to make this kidney drown in water.  Healthy kidneys love water, they love it.  You can make your levels look awesome by drinking more water if you don't have kidney disease.

Do enjoy your fluids folks.  And have a tall glass of water on me.  You don't realize how wonderful the simple things are until you can't have them.  Some people in this world can't drink water for other horrible reasons like they don't have clean water available, so at least I am not in that situation.  I will accept my 32 ounces and enjoy it with every slow sip I get.

Cheers!


2 comments:

  1. I love reading your point of view, baby. Love you.

    ReplyDelete
  2. Now I'm sitting here at my desk looking at my 24 oz glass of water that I've drained 3 times today and my thermos that started out with a full pot of coffee and is now dry and the empty Gatorade can from lunchtime, and I'm wondering how you do it.

    Love you, Tonia - keep on keeping on!

    ReplyDelete