In case all of you that read this don't realize. We had a really hard time putting a donate button on this blog. We really talked about it, and we almost didn't. It is so difficult to ask for help. It takes humility and vulnerability. Most of our friends are struggling artists that don't even have expendable income, too. We know that. We have had help from strangers, acquaintances, family, friends, and friends of friends. Some people we haven't seen in years that Facebook has enabled us to reconnect. The money we have raised has done so much more than financially support us.
The truth is: Matthew and I have felt pretty alone for so long. Being sick isolates you. It has this strange way of creeping into your thoughts and making you second guess every friendship you have. But the donate button and just this blog as well as Facebook has helped Matthew and I realize how NOT alone we really and truly are. I feel like I haven't seen anyone all year, yet I feel more connected to my community than I ever have been because of the internet.
There are many ways to reach out to someone. Every time we get a "like" on Facebook, or a "You guys got this!" under a picture we post, we feel loved. A text from a friend saying they are thinking of us, or a card in the mail reminding us we haven't been forgotten can change the course of our day.
People say the internet and technology is pulling us apart, that we no longer have personal connections because of it. But I say that if we learn how, technology can connect us in ways we never dreamed. Because at the end of the day, if life isn't about living and loving as much as possible, than I don't know what it is about. It isn't about charity, it is about helping support the ones who need it because one day it might be you or someone you love that needs help and needs to feel loved. And Matthew and I feel very loved.
So thank you.
My frustrating and amazing journey struggling with Atypical Hemolytic Uremic Syndrome (aHUS) and Kidney Failure.
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!
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!
Hospital Me THEN (2012)
Hospital me NOW (2015)
Post Transplant-1 Year (March 2014)
Pre Dialysis Pinup Shoot (2012)
Mid Dialysis Boudoir (March 2013)
Non-Pinup Me Now (2015)
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