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:


~ 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

Monday, October 15, 2012

HMO Nightmare

My insurance is an HMO.  I have had really appreciated it as insurance for my chronic illness for several years now.  Yes I need a primary care physician to see a specialist, but since I have a chronic illness, I mostly see one doctor: my nephrologist.  At least I did only see one doctor until I was diagnosed with aHUS...

I was diagnosed in December of 2011.  At that point I was joining my husband's insurance plan at the beginning of 2012, also an HMO.  We thought it would be best for us and we can always switch in a year if we hate it.  Little did I know I would be diagnosed with one of the rarest diseases requiring me to travel across the country to see specialists that are considered out of my HMO network.

My doctor was twiddling his thumbs when it came to my kidney failure.  As soon as I was diagnosed, I was screaming "transplant!"  But it wasn't that easy.  My doctor has never treated an aHUS patient before, ever.  He didn't know what a new kidney would do, or if my body would even take it.  He couldn't even find studies on it in journals.  So I was thinking I had to make this kidney last as long as possible.  Because if it fails, it's dialysis.  And if I can't get a transplant, dialysis will only keep me alive for 30 years tops.  I don't want to die at 62 (ironically the age my mother was when she gave me this kidney), so this wasn't good enough for me.  I hit the trusty internet.

I found a website for parents of children with atypical hemolytic uremic syndrome and immediately contacted the woman who founded the site.  aHUS is considered a children's disease because studies show that 40% of people that have it are children.  Honestly, I believe there are more adults that have it that haven't been diagnosed, but that is a different story.  I even had it for fifteen years before we knew! (I later was kicked off that website for posting "inappropriate hospital pictures".  I guess my IV pole dancing wasn't funny to them.  I thought it was awesome.  But I laugh off most of my pains)

The University of Iowa!  The place that studies my disease!  I decided I would need to see them.  I went to my doctor one more time to find out his plan.  His plan: wait until my kidney fails, then go on dialysis.  My plan:  Work my ass off to get a transplant so I can get back to my life as I know it.  My plan was way better.

I contacted Iowa and got an appointment to see them in person in September.  I figured getting my insurance to approve would be easy.  They are the only people testing for my disease, and the only specialists in the country.  WRONG.

Here's the catch.  I had to go to my primary care physician to get a referral.  Dr. Viera, a nice little lady used to treating coughs and everyday little things, knows NOTHING about me.  In fact, she seems terrified to touch me.  Usually all she does is check my blood pressure and send me to other specialists. She doesn't even have medical files on me.  I get an appointment with her and explain my need to get to Iowa for a transplant evaluation.  I told her all I needed was for her to write a referral to my insurance so I could go.  She assured me it would be done.

It was not done by the time I saw the doctors in Iowa.  My insurance is furious.  I called her office and they tried to submit a referral after the fact, but for some reason Blue Cross won't accept backdated referrals.  So I was going to be stuck with a huge Iowa bill just for taking my health into my own hands.

After my Iowa transplant evaluation, Blue Cross would not approve my transplant there.  They claimed I could get a transplant in Oklahoma, even though the Oklahoma Transplant Team has never done an aHUS transplant.  I don't know about you, but one thing I never want to be first in is SURGERY.

So the only option might be to change from a HMO to a PPO.  But we can't do that until January 1st 2013.  Meanwhile, my kidney is hanging on by a thread (and honestly I should have started dialysis a long time ago) and my head is getting cloudier by the day.  I think dialysis is looming closer but I don't want that.  It is going to be awful.  I have to hang on and keep fighting.  There must be some kind of loophole.  Does anyone have a spare 2 million dollars hanging around??

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