Kidneys and Pin-ups: What an amazing night!

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!

Monday, January 7, 2013

What an amazing night!

A year ago last night, Matthew and I were sitting on the couch playing a video game when we received a phone call from the Chicago area. It was a friend of ours, John Tovar from the Society of American Fight Directors. The SAFD is a society my husband belongs to as a Fight Director and Stage Combat Teacher, and they do many regional workshops that are amazingly fun to go to. He is very involved, but I wasn't able to pursue my own advancement in the society because of my health conditions throughout the years. But when we answered this phone call, we had no idea what kind of society it truly was. John was calling to tell us that the Winter Wonderland Workshop in Chicago was donating their annual raffle money to Matthew and I to help us with our medical bills.

After he told us the news, we heard a roar of cheering from the background. It was so overwhelming, we were both crying. This professional society had made us feel so special. The money was an amazing help and allowed us to move closer to my doctors for this year, but the real gift was reminding us we were among friends even if we were far away and isolated. Amazing.

Last night, we were able to personally thank the society at the Winter Wonderland Workshop this year. The raffle was collecting for a fellow society member in need, and we were hoping to explain in person what their money was helping to do. Being chronically ill is isolating for a family. We couldn't afford to eat good meals, go see movies, or even get drinks with friends. The copays were wiping our bank accounts and crippling us. Also, being sick enough to take you out of your job really takes a toll on your psyche. You truly feel as if the whole world is leaving you behind. A phone call or even a text or facebook post means more than you can believe.

So here I was standing in front of a room full of very influential Stage Combat teachers. Many of these are people that my 20 year old self would have been star-struck to even be in the same room with. But because I have this unlucky disease, I am able to meet and have amazing relationships with them, while helping another sick and unlucky person feel a little bit more secure and loved. I was just so overwhelmed. What a fantastic evening!