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:


~ 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

Tuesday, July 9, 2013

No more donations

I am not sure if anyone noticed, but I recently removed the paypal donation button on the right of this page.  

Matthew and I want to thank everyone who donated to our medical expenses.  It was so helpful, we cannot express.  Your donations have helped us to travel to and from Iowa and Chicago, purchase medicines, pay our copays and deductibles, and generally feel very loved and supported throughout our whole ordeal.  We can't thank you enough.

From now on, if you feel you have extra money you want to donate to someone, find another sick friend and buy them dinner.  They appreciate it, even if they don't have much of an appetite.  Being sick feels very isolating, and the best think you can do as a friend to a sick person is make sure they know they aren't disappearing.  Thanks to all of you, I felt very visible.  That is going to be present in the play that I am writing. 

You have probably noticed that I don't mention religion or God much in this blog.  Some find it outlandish that I am not religious after all that I have been through.  But I truly believe in the power and love of people.  Humans.  I am a humanist.  Instead of thanking a God for giving me my life back, I thank the surgeons who went to school all their lives to be the best at what they do and for taking my case on.  I thank my husband who decided to risk a lot to give a part of himself to make me whole.  I thank all of you, atheists and deists alike, who have supported and loved us throughout this whole process and continue to offer support in any shape or form.  I believe it was up to people to make those choices, and I feel very connected to them.  

If I have to thank a God for the good times, that means I also have to be exasperated and angered about the years and years of bad stuff he sent my way.  I am not interested in that kind of negativity.  If he works through people, then great.  I see those people and I spend my energy thanking them directly.  There have been some great things that have come out of this illness, and to me it is the connections to people across the world that I cherish the most.

We all get through the tough times any way we can.  I don't judge anyone for loving and needing their religions.  Human interaction, chemistry, and love is my religion.  I base my career on it, and my life as well.  So thank you all for being here.

Couldn't resist.  I love this picture so much.  Taken by Craig Lawrence.  You can even see my handcuff necklace.

This was taken In the first week of January at the SAFD Winter Wonderland workshop.  Oh!  I have a post about that!  I will add it to that.

Monday, July 8, 2013

Just some recent pin ups

Recently I went to a Pin-Up Workshop with Bettina May at Teaze Dance.  We had a blast!  These are a few of the photos from the shoot we did at the end.  A couple of charmers in here:

 My New Professor Headshot:

My hair is falling out!

About three months after my last transplant, I started losing hair by the fistfuls.  I would be sitting in class at VCU and there would be long strands of hair all around me on the floor.  It was embarrassing.  It grew back of course.  I never went bald, just thinned.  It freaked me out though.

It is happening again.  Last time we determined it was a long term reaction to anesthesia.  I had forgotten it.  I have a sort of tight relationship with my hair, and I don't like seeing it fall out.  I'm not 25 anymore so I hope it can grow back again after this.  My body has been through a bit, so I have to expect things like this to happen.  I might even have to.......CUT IT.  *gasp*

There are also some pictures that I haven't posted yet and I am working on it.  They are on a CD and I got this new Windows laptop that doesn't have a CD drive.  So I have to figure out how to get the pictures on here.  I will get those though.  They are a pretty good benchmark of what I look like now.  I am on it. 

But on a brighter note..The University of Iowa published an article about me and this blog!  If you haven't read it, I added it to the links on the above right.  But it's here too:


I love it.  It's a great article and it captures a lot of personal things about me.  

Matthew and I are traveling back to Iowa in August to see the doctors again and do an in person interview on camera and see what happens.  Super exciting!


Wednesday, July 3, 2013

Writing the Show!

Matthew is out of town for three weeks and I am filling my days with aerial silks, pole dancing, writing an article about intimacy on the stage, and working on my play.  Also I am trying to get some of this damned prednisone weight to fall off of me.  I weigh 139 (I was 115 in the red satin sheet pics).  UGH.  And I eat about 1200 calories a day!  It's insanity!  But my butt is looking pretty awesome I must say.  The only problem is the huge bulge that is the FOUR KIDNEYS in my abdomen.  Stop, I know.  Yes I am happy to be healthy.  So happy.  An hourglass figure would make me even happier though, you know!  :-))))))))))))))))


So if I haven't mentioned, I will be directing a play in early October at the University of Oklahoma.  I have been writing bits of it for a little while, but a colleague of mine, Erin Crossley, is helping me streamline it now.  She is a former student of mine from Oklahoma City University and she always loved movement as much as I do.  I am happy to have the help too, because she has a great eye and knows my aesthetic better than anyone.

The play is about this.  It's about all of this.  It is going to portray a woman going through the struggles of disease and falling in love in the meantime.  Most of my work has no dialogue but I think this one will contain some monologues, possible voice overs that just might be taken from this very blog.  I love turning life into art, and using struggles to help others.  Even if it just moves them for a minute. 

I have to admit it is difficult writing a piece about myself.  It feels slightly narcissistic.  But I think it is a good story that needs to be told.  Erin is helping me keep it universal so it doesn't get too personal. It should not be something that only people who know me can understand.  But I am loving the process of discovering it.

I am hoping to include some aspects of boudoir in the show as well, of course.  Mainly because just like this blog, no one wants to hear about just medical stuff when you can see sexy things at the same time.  Ok, maybe that's how I feel.  

But there are great things in the mix coming up.  I am going to try to involve this blog more in the writing process.  So keep checking in, Sweet Friends!