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!
Four year anniversary!
Matthew and I celebrated our 4 year anniversary this week, and I have to say I can't say where a whole year has gone. It is difficult to believe we haven't had a whole year of health since we got married. I know this one is going to be good though.
We were able to go to a Hollywood Vintage fundraiser for the tornado victims. It was probably our most drunken and crazy anniversary yet, but I'm not complaining! Here are some pics from that:
We have been taking it easy, and we are almost about to hit the three month mark since the transplant. I am getting Soliris every other week and blood drawn twice a week with nothing to remark about it. All seems stable for now. But we enjoy each other, truly.
I stopped going to pole for a few weeks to heal my incision site. This week I started going back again. So far so good. I just want to trim up and get my flexibility back. I miss being able to move. Some day I will go try some aerials and see how it goes.
In July, Matthew is going to be away teaching at a Society of American Fight Directors workshop out east. I hope to go visit him there. There is a possibility I might have a workshop of my own to go to in DC, but I am still getting confirmed.
We have managed to stay safe from the tornados around here. It has been a crazy month though. Many people were not so fortunate. We are selling our house in Norman on the 10th and are heading down there today to make sure it is still standing.
Also, Matthew and I am taking the donate button off this site now. We are so amazingly grateful for all the help we have gotten, and it is time for you to use your good will towards others in need. The victims in Moore and other places in Oklahoma could use generosity right about now.
As always, thank you for checking in. I have another post about the honesty of recovery coming up.
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