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

Monday, April 22, 2013

Ugh, steroids.

It has been a long time, Folks.  Sorry for that.  Remember the old post I made a while back about side effects?  Well I am glad to report that my side effects are not what they used to be, but I guess I was really enjoying one of the side effects that I no longer experience and miss dearly. 

My lack of appetite.

I have spent the last three years losing weight so fast that it was alarming people around me.  And I am not going to lie, as a naturally slightly overweight woman I loved being skinny.  Maybe I loved it too much.  I bottomed out at 110 pounds at my sickest.  I didn't try to lose most of the weight.  I truly wasn't hungry and experienced so much nausea that eating wasn't ever a good idea. 

Now I am on Prednisone, and I feel like a monster has been unleashed.  Prednisone and I go way back.  I have been off and on high dosages of it for the past 15 years.  I hate and love it.  And right now I loathe it.  I have gained 15 pounds in six weeks.  That comes out to over two pounds a week.  At first, I was just happy to be hungry again and happily ate whenever and whatever I wanted.  But now I have this horrible sense of anxiety attached to eating, which is also a side effect of prednisone: mania. 

My clothes don't really fit anymore and I get stressed whenever I want to go out that I don't have things to wear because I got rid of my "fat" clothes.  Now I need my "fat" clothes.  And so my mind tells me that I must be fat.  I know I am still in a healthy BMI for my height, but man I just loved being small.  I emotionally thrived at that size. 

Yes, I am happy to be healthy.  I don't want anyone to think I would rather trade dialysis and skinny jeans for perfect creatinine and clothes that don't fit.  I am truly grateful.  But my hate for prednisone burns with the fiery hot burning passion of a thousand suns right now.  And I think it might be driving me a little crazy. 

And I am only on 10 milligrams!!  Jeez!  It's such a low dose!  I can't believe it is affecting me this much! 

I had more boudoir pictures taken of me last week to remind me of my outer beauty, like I did pre-transplant.  I hope they help me gain some confidence.  I just don't recognize this body.

No.  That's not it.  I do recognize this body.  It's the one I was glad to get rid of two years ago. 

Now this blog has been mostly about surviving the bad and putting things into perspective.  I am trying really hard to do that now.  I didn't even want to post this blog because it feels so out of character for me to complain about something so trivial as weight gain.  But I feel I need to continue to document this process truthfully in the case that someone might learn from my experiences in the future.

So I feel great, and I hate gaining weight.  That is the update for now. 

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