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, October 8, 2013

The Show is Closed

                                         (Chandler Ryan blogging in Dancing in the Storm)

I am sitting in my post-show depression, as is usual after closing.  I already miss the ensemble.  But it is a bittersweet feeling.  I can't tell you how many people approached me after the show who needed to talk to me about their own hospital experiences and horror stories.  I loved being able to connect with these people.  It makes me so proud that a piece of theater can evoke such a bond between strangers.

This play was only the beginning of its creation.  I am planning on writing another act to tell the rest of the story.  I left out a lot of details.  For example, the show only has one transplant, not two.  Also, it skips about seven years of struggles that Matthew and I had to overcome.  I am sure it will get done though.  After all, my last play, Between the Lines, was mounted three times before I felt really good about it.  Even that could have more expansion.

I wish I had my own company.  Maybe someday.

Change of subject:

I have had many instances of confrontations in my lifetime with males in positions of authority to me.  Any psychologist will probably tell you it stems from my relationship with my father.  It's true, we had some issues there.  But I just cannot stand when males try to control me, how I feel, how I act, or who I befriend.  I am speaking of men on purpose.  Women manipulate differently.  They are much more deceptive (and in a way more dangerous I am learning as of late).  But in my experience, men are upfront with their control tactics.  This sounds out of the blue, but it isn't really.  (Even if it is, it's my blog, right?)

I could name you male after male after male who has at first befriended, even loved me like a father or an extremely close friend and then turned on me.  I have had my heart broken so many times by these men, and despite the fact that there are two sides to every story, I usually end up being pegged as some kind of villain.  I have lost a lot to these men, simply because I am not willing to submit to something I feel is wrong or unethical.  So I get punished for standing up for what I believe to be right.  

One time I had a man whom I had never met (who I will not name) yell at me right in my face because I was holding auditions at a time that conflicted with his play's auditions.  It shook me so much I didn't know what to do, so I apologized to him.  I apologized for something that wasn't my fault.  I lost sleep for days, and I still think about that event.

After my aHUS took over my life, I had no control and I had no choice, but I never apologized to it.  I fought back.  I researched how to take control, I found the doctors who could help me, and I traveled on my dime to fix my body.  It gave me a certain amount of perspective.  If that same man came into my face with the same situation, I think I would have to laugh at him.  You?  Control me?  I don't think so.  In fact when I was at my worst, I remember thinking of that event and wishing it would happen again so I could have a redo now that I am so different.

In my play, there is a line that states, " We came back from the dead this year.  That happened, and it has changed us."  It HAS changed us immensely.  I may look young, but I am not a little girl.  I won't beg because I have more to offer than many people seem to realize.  I don't need pity, because I am actually happy with my situation.  I have seen sneaky sexism at so many different levels, I am so tired of it.  And learning methods in dealing with it is actually something I have to offer my students.  (Yes, the students see sexism too, they aren't stupid.)

For the first time in my life I don't feel like I need.  I don't feel like I have to stoop, and I don't feel like I have to be fake.  This is me, pin ups and all.  Take it or leave it.  If that makes me a villain, then I guess I am.  Matthew and I are two of the most honest people you could meet.  We trust everyone around us.  We always assume we are surrounded by friends.  And we are good to our friends.  If you are taking the time to read this, I bet you ARE a friend.  

                            (A picture from Dancing in the Storm)

This blog has 20,600 views now.  If maybe 100 of those views were people looking in disgust, that still leaves 20,000 other views done in support.  Thank you for supporting us, friends.

On to the next project!

Yes, I am aware of the math problem in that.  I assume the other 500 found me by accident.

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