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

Monday, September 24, 2012

Sunday, September 16, 2012

I promised you pin-ups!!

So I did a photo shoot today with Dynamite Dames.  It was my first time modeling like this.  Really fun!

Just a taste:
I won't get the pictures for a while, but I promise pin-ups in the future.  I thought it was something to distract me from feeling sick.  And they can always photoshop the bruises!

Saturday, September 1, 2012

The Tedium of Chronic Ilness

August 20, 2012

(This is a letter I wrote to my hospital and an example of the messy side of chronic illness.  I wrote this bed-ridden and sick and nearly hospitalized.  As you can see, it took me from December of 2011 to September of 2012 to clear up this issue.  After this relatively curt letter, they waived my bill and that was the end of it.  I could have been seriously injured, or hospitalized if I had continued with the instructions I was given originally.  And I am forced to go back to the same hospital where those very nurses work every time I am admitted)

To Whom It May Concern:

            I was admitted into OU Medical Center Hospital at Presbyterian Tower from December 21st to the 29th.  I had a central line inserted into my chest so that I could receive IV medications at home.  I was released with specific instructions on how to care for the tubes and how to give myself IV antibiotics through it.  However upon attempting to use my tube, I found that the instructions I had received were incomplete and possibly incorrect.  After getting in contact with a home care nurse consultant and the doctor who released me from the hospital, I was told to come into the emergency room for assistance. 
On December 31st of 2011, I went to the emergency room.  I brought my own supplies and IV medication with me.  I was consulted by a dialysis nurse who came from a different floor. She explained how to use the tube correctly.  She confirmed that the instructions I had been given were incomplete and gave me the correct method of using the tube.  Upon leaving, as I had received NO treatment from the emergency room, the Doctor on duty said he would waive charges for us.  He explained if I get charged, to talk to billing and the charge would be lifted.
To reiterate, I was in the emergency room for the sole reason that a nurse from Presbyterian Tower had given me incomplete directions for my home care.  Because of this, I am contesting this charge.
I had the charge waived from the physician’s bill.  However I am still being charged for a $100 copay that I was told would be lifted.  I have enclosed the letter I received stating the charge was waived.  I have now been sent to collections for this charge.  I would like to resolve this matter. 

Thank you,

Tonia Sina Ellis