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

Sunday, January 19, 2014

I have to get this post out first.

I watched a short video of Lizzie Velasquez, and that girl is really inspiring. 

Here is her link:


Check it out if you haven't heard about her.  She has a disease that is unnamed and has disfigured her face.  She can't gain weight.

Now, I am feeling a little bullied.  I never really put it that way until I watched her video.    I have to admit though that "bullied" is the only word for this feeling.  I have a trigger response to bullying.  Not the typical Italian one either.  Although I wonder why that doesn't deter people from picking on me....they have no idea what my relatives in Toronto are like.  No, when I get bullied, I work my ass off and leap forward.  I think that stems from my disease.  aHUS is a bully too.

(No, I am not going to name any names here.  It wouldn't matter.  They would never take time to actually read my blog!)

I guess I am a little surprised still.  I know I have probably posted about this before, but my memory is come and go.  I thought after what I have been through, that people would give me some exceptions.  I mean, if I knew someone with a really rough disease, I would go out of my way to help them accomplish their goals if it was in my power to help.  But that isn't always the case.  Chronically ill people get a lot of attention, even if they don't want it that way.  That can be hard to understand by the possible healthy attention hoarders around them.  I think people with chronic illness become really strong people for several reasons. 

1)  There are good days and bad days.  You become addicted to the good days, and when a bad day comes around, if it has nothing to do with your illness, it isn't so bad.  If someone is mean to me now, it still hurts.  But at the end of the day, I'm not dying right now.  I actually have the strength and energy to be upset.  Frustration with betrayal can be a really positive emotion in comparison to suffering via disease.  The mind becomes more and more resilient to victimizing human behavior.  Maybe that is just me getting older, but I think aHUS has done that for me

2)  Our pain tolerance.  Do you know how much time we have spent alone in pain?  When you are in pain, all you can think is, "I just want this____ to end."  I am going to be honest, "this ___" can be exchanged with many words, "this pain," "this disease," "this day," and yes in extreme situations, "This life."

One time, I was having gall bladder pain that was so bad I couldn't talk or breathe without screaming.  Matthew had to drive me 35 minutes to the emergency room in my car.  I remember seeing the handle of the door and thinking if I jumped out at 75 mph, the pain might stop.  That was terrifying.  But when the pain left me, I was on an emotional high for three days.  The experience of NO PAIN is one people forget to appreciate. 

Once you have felt that kind of pain for years, it desensitizes you to some things.  I find that people can still hurt me with their actions for a moment.  People, even friends, can still surprise me with their betrayal.  But ultimately, it will only make me appreciate the people who don't betray me even more than I did before.  I have more love for friends than I have anger for spoiled healthy people who love to throw the first stone.  Yeah, I said it!  Spoiled!

My friends are people that still love, support, and even like me despite the things they don't fully understand about me (such as my love for classic strong and slightly manipulative femininity, and my need to watch serial killer documentaries).  Now that is a friend.

3) Other people's problems seem a little more "solvable".  I find that giving advice is really fun.  How great is it that people have problems that can be solved?  Imagine having only problems you couldn't solve.  It's hard.  That's why I love choreographing and coaching actors confidence.  All the problems are solvable!  How wonderful!  How easy!

This is why so many ill people become motivational speakers.  Because they are happy to help people solve their solvable problems.

4)We meet a lot of people.  Some we only meet once.  They save our lives, and they leave sometimes.  We learn to appreciate every encounter as if it might be the last time we see that stranger.  Every conversation could be the last, and do you want that person to remember you being negative or even boring?  Never!  Make them comfortable.  "Hi there.  If I die during this infusion, could you make sure my hair looks good?" 

I suppose that is why I love college acting students.  They hug and say, "I love you."  They laugh and share emotions all the time.  They appreciate theatre in the rawest form as something that fuels them still.  They haven't been poisoned by "the realities" of adulthood yet.  They don't have to deal with censorship, butts in seats, or even donors that don't want to see two people kissing (or even more!  Gasp!) on stage.  They don't see the ropes behind the scenes, and I am so glad they don't.  I wish I didn't have to see all of that.

So while it hurts that I feel bullied, it only reiterates the message in my brain, "Don't be where you aren't wanted."  So that is my 2014.  I will not waste a precious day of this brilliant year feeling awkward and obligated to put on a fake face and pretend I am comfortable around people who wish that I would just disappear to leave more room for their own success.  I just got bored typing that.

Maybe you noticed:  Disappearing is never something I will do.

Oh, and watch out for attractive Italians that say aboot and wear suits.  They as well can't be controlled. 

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