Pittsburgh and NEW BOUDOIR pics at last!

Lots of exciting things happening!

First of all, I traveled to Pittsburgh for an aHUS Meetup to speak as the Patient Advocate on Friday night.  It was the largest meeting I have gone to yet. There were enough adult patients that we could all sit in a room without families and just talk about our situation. It was my first time doing this and couldn't have been more successful.  These people could finally vent without their families and caretakers around. So much pent up emotion. But they are so strong.  Some of their struggles were completely overwhelming. I loved this part of the meeting.

I couldn't leave on Saturday because there wasn't a flight that left late enough to get me out and not miss the most important part of the meeting.  So on Saturday I had planned to hang out with the aHUS friends at the meeting.  But unfortunately many people left, and the others made other plans.:(

Not to worry, I crazily met some amazing people in the lobby having a birthday party for their friend.  They invited me to join them and of course, I said yes. One of my favorite things is meeting new people in a new city. There are so many opportunities all around us! If I had been too scared to walk over to this group of people, I would have had such a mediocre and lonely Saturday. But these friends were amazing, and are ones I plan on keeping if I can.

Overall, the trip was fantastic and inspiring. And my new life motto of accepting opportunities when they come has really changed my life for the better.  I live a more exciting and fulfilling life, and I meet so many amazing people along the way.

I have been doing quite a bit of modeling lately.  I haven't posted the pictures because many of them are still being edited. but this is my latest shoot that came with my application to be a Confidence Ambassador for Adoralee Photography in Norman, OK. It really sounds like it would be a dream come true for me if I got it, since all the duties described are things I already do, like convincing other women they are beautiful and building confidence in others.  Also, periodic photoshoots are part of the job, along with traveling to conferences (um..I am an expert at that now :)  )

So here is the unveiling of some of the pictures from my new shoot with Adoralee.  I hope you like them! This is my "experiencing a transplanted kidney rejection on steroids" shoot. If you look closely, you will notice there are bruises on me.  All of these pictures are completely unedited.  This is my body with NO photoshop or editing, just the way I like it. :)

I'm a pageant girl!

This last weekend, I was selected as a finalist to perform in the Stray Kat 500 car show's Miss Kitty Pinup Pageant.  It was my first time doing anything like this, and I am so glad I was able to do it. There were so many beautiful people I was able to meet, and each one had just as much inner beauty that made them shine.

I was contestant number five, Sina Star.  

I absolutely love the pinup culture. Look at all of these beautiful women! Each one was friendly and supportive too! I felt like a celebrity all weekend, because everywhere you turned there were photographers shooting pictures of you.

These last two are courtesy of KaraBelle Photography!  Aren't they pretty? :)


Many of the contestants were already friends, and some had participated in the pageant last year, but that never made me feel out of place.  They welcomed me immediately.

This is a picture of the Friday night pool party.

In the end, I won the the title of Miss Kitty Pick of the Litter Wild Card. It was a title awarded by the pageant staff, essentially. I like to say it is sort of similar to winning "Miss Congeniality" because of that. It was a great experience, and I had an absolute blast.

Health Update:

My kidney, Apollo (for those of you who are new to this site, Apollo is my husband's transplanted kidney), is hanging in there.  My creatinine is at 1.5 as of Wednesday. My doctor says I am "stable" but he isn't comfortable yet. The issue is that the antibodies I formed to attack Apollo are still in my body, even though my creatinine is stable. I'm immuno suppressed enough that I'm not technically in danger at the moment, but my doctor is weighing the options of what to do. He has steadily decreased my steroids to 15 mg now, but that makes him uncomfortable I can tell. Normally, I would get a central line in my neck again and do plasma exchange to get rid of the antibodies, but he doesn't want to be so aggressive while I'm stable.  But if the creatinine goes up (when, not if), we will most likely have to treat it with more force. I'm not willing to lose this kidney so fast, so I will do what I can to protect him.

But at the moment, I am stable and feeling just fine.

Also, I have been traveling around the country for atypical HUS Meetups, and giving speeches to other patients about my experience. I technically welcome them to the club, but I have an advocacy message that is part of my speech. I show some of my infusion pictures.  The message is:

Don't let anyone judge how you choose to survive your chronic illness. Do what you need to feed your soul. People may try to stop you by crushing your self esteem and not being understanding of what you have gone through. They don't matter, because they don't get it. Most of those people haven't been through something that tossed their mortality around. You get to do what you need to do to survive, and no one gets to say you are wrong.

Take it from me, this message is personal. I talk about my experiences in this blog, and around Oklahoma. All the judgement that comes so naturally to people from this area can be stifling.  Opportunities like this pageant or advocacy meetups remind me that I'm not crazy, and that I'm doing the right thing. Using pinup as part of my advocacy is a no-brainer. If I can draw awareness with my pictures, how can anyone say it's wrong? 

People that don't get it, that's who.