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

Friday, April 10, 2015

Prednisone Bistro, table for one please.

I am getting ready for my 9th night on high dosages of steroids. The past four nights since coming back from teaching in Louisiana have been like spending time with a different version of myself. A Tonia that I am very familiar with now, but haven't seen in a while. Tonia isn't Obsessive Compulsive. Tonia does have anxiety issues stemming from PTSD, but has learned to control them with medications and other forms of therapy. Tonia has a sense of humor that is founded so deeply in her soul throughout the years of struggle, it's almost difficult to make her NOT laugh. Tonia makes doctors laugh when they are trying to be serious. Tonia doesn't clean things. She would rather spend her time with a hobby or something or someone she loves, and she doesn't love cleaning. Tonia doesn't cry when she's sad, so she cries when she laughs because those tears have to come out sooner or later. 

I, Prednisone Tonia, let's call me Prednisonia, am very different.  Prednisonia is short tempered, antsy, flicky, sharp, emotional, manic, sometimes mean, paranoid, self-conscious, obsessive compulsive, and narcissistic.  She yells at doctors when she feels like they aren't moving fast enough, she lashes out when she gets defensive, she spends literally 12 hours a day cleaning compulsively, and she stays up all night hallucinating in a zombie-like haze because prednisone keeps her awake and ambien keeps her hypnotized. Last night I folded laundry until 5 in the morning watching TV and laughing with (even high fiving) invisible friends in my living room. Yes, Prednisonia is a scary distorted, countermask of Tonia. I teach a movement class about finding countermasks within the students' personalities. It's a scary thing to confront.  Tonia has come to recognize Prednisonia as part of herself. I'm even growing on her a little.

Prednisone and I have a long term love-hate, mostly hate relationship. I have been on and off high dosages of steroids six times.  Two of those times were for transplants. They wean you off pretty quickly for those, but they start you at mega doses at first. I have hallucinated spiders and bugs on my hospital bed and things like that on mega doses. But I compare steroid side effects during transplant to being pregnant.  You hate what it's doing to your body, but you have a beautiful baby when it's all over. Steroids without transplant is all negative side effects without the euphoria of knowing you have a newly functioning organ that is making you feel amazing. And since I have developed PTSD throughout the years, now panic can set in easily.

Long term high dosages of steroids deform my face and body.  I lose my curves and my face gets round (Moonface, they call it).  They make everything hurt.  My skin gets thin and acne appears, I start growing hair on my face, I stop menstruating eventually, and emotionally I become angry and frustrated at what is happening to my body. I know I have postings about steroids from years ago, but I am trying to document this from a different perspective this time.  I am going to really try to channel all the extra adrenaline into positive things, like advocacy, my career, and even this blog. 

Today, I got my blood drawn.  I am finding that the pinup is actually serving as a fantastic distraction and therapy for my anxiety. It makes me feel good about having to do medical stuff.  I did this hairstyle in the lobby in five minutes with three bobby pins, no curling iron, and no hairspray. I was pretty proud of it, and it cheered me up. 

I even got to see one of my phlebotomists I haven't seen in years.  I used to be one of his "usuals" before transferring to the Cancer Center. It was nice to see him. He told me he was afraid when I stopped coming a few years ago because I looked so sick he assumed I had passed away.  

After the blood draw, which was slightly more complicated than usual, my friend, Mia, did my hair for me.  She did a great job. I love it! 
Later, I got the numbers back from my labs and my creatinine was 1.4.  That's a great number considering it had gotten all the way to 1.9 last week the day before my biopsy. My doctor says he isn't going to change my prednisone dosage (no amount of lip pouts and eye batting will change his mind on this.  Believe me, I tried.)  until I'm back down to my "normal" which is about 1.1. That means Prednisonia is going to rage on these steroids for another five nights before any side effects get better.

One thing: This little episode was the largest reason I didn't jump back into full time work right away. When things go wrong with me, it's never simple. And worst of all, people who have me in their life have to face that Healthy Tonia is temporary.  She exists in pockets of time, and when she surfaces, you better be ready with a party because she will be up all night begging to go skinny dipping in the ocean. For that reason she is half her age and twice her age at the same time.  So give Tonia a break when she gets back. She'll want to be a little crazy for a bit to make up for some lost time, but she means well. And after everything I'm going to put her through, she will be so happy to resurface for a great all night party on the town. 

Any town.

Seriously, get her out of here if you can. Oklahoma is crushing her like a dying star.

So, 2:35 AM, what should I do now...?  hm..maybe it's time to reorganize my underwear drawer...

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