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

Thursday, March 7, 2013


Matthew gave this to me on my birthday last September.  I was very sick at the time, just about to go on dialysis and resisting it every day.  I think I mentioned to him how I didn't think I could possibly survive past 60 or 70 with all my health issues, and that it scared me sometimes.  He wrote this for me.  I thought it was only fitting to schedule it to post on our transplant day.

This is the selfless man who is giving me a piece of himself to make me whole again.  He's a hero, a nerd, a warrior, a role-model, a lover, and my favorite person in the whole world.


I remove my helmet to depressurize
The airlock is loud and refreshing
The dog's spacesuit is like mine
But more comfortable, more dashing.

Once safely inside I call out
To my favorite star
In this wide galaxy, we've done so little
But we've come so far.

You're still here
And I am too
In the year twenty sixty-two

It's not so hard for me to move at 86
When gravity can be set for just one-sixth
Your kidney function might be slightly low
But your annual pill returns your glow.

It's your birthday, and the whole solar system knows
Thanks to Facebook which grows and grows.
You tune in to the video feed
Showing countless friends from every creed.

They call you Zia, Professor, Director, and Friend
The wishes come all day, and seem to never end
Hundreds and Hundreds filling the room with light
Our space station filled with warmth on a cold space night.

You've inspired so many
For eighty-two years
Fighting and clawing
Through the pain and the tears.

I'm completely bewildered.
How are you here?

What we've all learned in this fathomless space
The secret to resilience and aging with grace
Is to just love one another, day after day
Floating through time, coming what may.

And onward we go through another frontier
Health is no issue, neither is fear.
We'll live and we'll love with kindness and light
Knowing that each present's future is bright.

You're still here
And I am too
In the year twenty sixty-two.

~Matthew E. Ellis


No comments:

Post a Comment