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:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ 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, April 16, 2015

A Zebracorn, that's me.

They decreased my steroids to 40 mg!!!  I am so relieved.  My face isn't getting huge yet, but that doesn't mean it won't.  If it does, it does.  But I'm just keeping you posted on that.

This steroid experience has been slightly different than the ones with which I'm familiar. I have been far less of the angry sort of Prednisonia of the past. This Prednisonia is more tensely anxious and impatient. She has panic attacks. She is, dare I say...flirty?  She's been pretty fun, aside from the physical nonsense that comes with the personality change. I can't believe I'm saying that. But I think the difference here is that this encounter has thrown my mortality up in my face again.  I always appreciate that.

You see, I recently had the pleasure of two life changing and eye opening events before this bout of sickness took its place.  I was chosen to travel to Washington DC for Rare Disease Week on Capitol Hill so I could meet with state representatives about rare disease legislation.  It was thrilling, and I learned so much.  I felt...important.  Something I haven't felt living in Oklahoma for years.  I then joined Global Genes by speaking at an aHUS Meet up in Pensacola, Florida.  I met a group of other aHUSsies and speakers that were fantastic humans.  But I realized from these two encounters how scared I live my life in Oklahoma.  

The thing is, I feel invisible here.  I have for quite some time.  I only thrive when I leave this place.  I can't really do theatre here, I can't teach here, I can't get cast here.  People don't see me, I'm invisible.  It's so strange.  But when I am doing advocacy work, I feel like I am DOING SOMETHING.  I am helping people, and even if I don't get a direct validation of that, I feel like I am contributing. 

So I appreciate this little flick of reality pushed in my face.  I am not finished fighting.  I am on my second kidney transplant at the age of 34.  These things don't just automatically fix you.  And I'm no normal double kidney transplant patient either.

"When you hear hoofbeats, think horses, not zebras.  We are the zebras."

It's the catch phrase of rare disease.  But it implies that there is a grove of rare Zebras running around somewhere together.  That's not it either.  We're Zebracorns.  Yeah, ZEBRACORNS.

So maybe I've somehow inadvertently made myself "invisible" here on purpose.  I have bigger and better things to do anyway.  There are other people sitting in hospitals waiting for their young intern to suggest this "rare disease she read about in a paragraph of her text book" that just might be the thing that saves a life like mine. 

So consider this my acknowledgment of that energy. 
This Zebracorn isn't going to hide and wait for people to notice she's dying.  She's a fighter.  This rejection will pass, and I will be ok.  And then someday I won't be ok.  And then we will handle that when it comes.  And that is the life of a Zebracorn.

2 comments:

  1. I love the term zabracorn for what we are!! Keep writing, I love readinwhat you have to say. Also I think you are awesome for all the advocacy work youhave already done. ♡

    ReplyDelete