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

Wednesday, March 6, 2013

One day more!!

Today was a long day.

I started with 6:45 dialysis in the center here for three hours.  At 10, we ran to the other end of the hospital (its a very, very large hospital) for an infusion of Soliris.  When I say ran, I mean my Mom pushed me in a wheel chair.  She ran like a champ.  After the Soliris infusion, we had a hematology appointment for my blood clot consultation.  Then we did an ultrasound.  After that we met up with Matthew and his parents.  He had a full day of consultations for donor stuff.

Now he and I are sitting together with a bit of anxiety, not quite sure what to do.  Matthew is really hungry.  His clear liquid diet is pretty rough.  They let me eat, but I tried not to eat in front of him.

So the plan is shower, cuddle, and wait.

We just want to thank everyone one more time.  We couldn't have done this without all the support from our amazing friends and family.  We love you all, and will I be back as soon as I can sit up and type!

And for your viewing pleasure:

One day more
Another day to go under the knife
this never ending road to change our lives
These doctors who will cut our sides
will surely need to hit their stride
one day more..

(Tonia) I did not pee until today...
how can I pee without your kidney?
 (Duet) Tomorrow you'll be right next door
and yet your/my kidney will be inside me...

(Tonia)One more day with my machine
One more day with dialyzing
What a life, I might have known
I'll go back to work again....

(Matthew) One more day before the storm
in one more day my wife won't suffer!
She will stand up on her own
And our life can start again....

(the time is now the day is here!!)

One day more!
One more day until the transplant,
we will face it standing tall
we'll get rid of all these chest ports, 
we will urinate like all

(Both) Watch'em run around
trying not to fall
carrying our kidney like its ten feet tall
here a little clip, there a little snip
most of them are doctors so they know their shit!!  

(all)One day to a newer kidney,
Every day she'll get to pee
there's a new world for the peeing 
can you hear the kidney sing?

(Matthew)My kidney's yours, I pee for you!!!

One day more!!

(This is the ensemble round part, everyone sings here)
~I did not pee until today, how can I pee without your kidney...
~One more day with a chest port!!!!...

Tomorrow is another day,
tomorrow is the judgement day
Tomorrow we'll discover what Tonia Sina Ellis has in store,
One more dawn,
One more day,

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