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!




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

Wednesday, February 20, 2013

No one is laughing

Our home is truly broken.  Neither of us can focus on anything.  We snap at people, students, even each other.  Today was horrible, but I said that yesterday too.  And today was worse.

I saw my nephrologist today, and at least he postponed increasing the times of my treatments until next time I see him.  I think he knew how stressed we both were and how it might not help to increase our dialysis treatments by almost an hour each.  But my chest port is starting to get to that dangerous place where it has been in longer than it should and infections are going to be difficult to avoid.

Then my boudoir photo session was canceled.  This was the best distraction I could think of, but the weather was really bad up north and the photographer couldn't make it into the city.

There is also something else happening that I will post about later because it warrants a whole post...and just writing about might send me over an edge tonight.

What we heard from the Iowa coordinator was that the transplant doctor was looking over Matthew's blood pressure test and needed to consult a colleague before making a decision.  We weren't told which way he was leaning before he asked for a second opinion, but we can only assume the worst (it has become a habit for us).  So that was Tuesday and we didn't hear anything all day today.  Tomorrow is Thursday and hopefully someone is able to make a decision and pull the plug or take the leap.



So you can see, we need this to end soon.  We haven't just been dealing with this for a month.  It's been years and years.  Our hopes can't get higher and yet we couldn't be more ready to hear the worst.  Muscled tensed and ready to receive that kick to the stomach.  Or a box full of puppies.  Either way, stop the torture.

BRING IT.

 

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