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

Wednesday, March 13, 2013

A look back: Transplant Day 5

This was a big day for me.

Matthew came over and ate with me.  Then he went back to his room to get ready for his discharge.  I had a lot to accomplish.  I was supposed to get my catheter removed and pee on my own.  They do three bladder scans to make sure you are emptying your bladder before you get to leave.  I also had to get an ultrasound of my blood clot and get my chest tube removed.  These are all big time consuming things.

So the first thing was to get the damn tube out of my bladder.  I hate removing those things.  They scrape you on the way out and peeing hurts a little for a few days.  After two doctor's visit and a bit of whining, they ok'd taking it out.  My nurse came in and did the honors.  Then I had to drink a lot to get the urge.  About an hour later, I tried to pee.  I remember the first pee from my first transplant.  It is a little scary.  You are afraid it is going to hurt and it kinda does.  But I squatted and pee came out freely. It burned a little at the end, and...ok, this is a little gross, but air comes out.  I think it has been trapped up there from the surgery and from the catheter?  But you, well, pass gas with your pee and I have to say it is the most foreign feeling.  Super strange.  But I have come to love it in a strange way.  My first time peeing on my own with someone else's kidney.  It's a huge moment.

Then I was wheeled down to ultrasound.  The tech poked around for a while and said he would show me the clot when he found it.  Then he said, "I actually can't see it."  I gasped. What??  It is possible?  And he grabbed a different camera to be sure.  "Yeah, it's gone.  No more clot up here."  I almost cried.   I was so relieved about this.  I have hated that clot since I got it in July.  The blood thinners are a hassle and a nuisance.  And now I don't have to take my infusaport out!  I was so happy.

But when I got back to my room, they told me they couldn't take the tube out that day.  I might have to wait three weeks.   I was fine with that.  I figured they wouldn't remove it until they were totally sure I was ok.  But then another doctor came in and said we could remove it the next day at 11:00 AM while Matthew had his post op appointments.  Yay!

We still had to wait for me to pee three times and bladder scan each time.  Finally I did that and passed the tests.  Then they counseled me on physical therapy, medications, and financial stuff before they let me go.  We ended up leaving at 4.


That night we were pretty tired.  We ate Chinese food and passed out.  Only to wake up early and go right back to the hospital for more!

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