2015: The Storm We Never Saw Coming

I started this Pinup Infusion project (more pictures from the shoots on my previous post) for a simple reason about a year ago. I had met a lot of chronic patients that loathed having to get treatments, and I myself felt like it was getting to be a chore.

 I know I've said it before, but there are different ways to cope and respond to illness. You can either accept it and allow your path to change, or you can fight it stubbornly. The way you respond to a chronic illness is key. I have seen people use their illness for attention by wallowing in it, I've seen people who ignore it and never draw attention to it because they feel it doesn't define them, and I've met people who have used what other people see as a horrible hand of cards in a way that empowers them to become advocates for themselves and others.

 
I'm by no means perfect or "right" in this area. I've slipped around the scale to all three of these at times. There is no right or wrong here, and sometimes I have to remind myself of that. My advocacy is based on helping people cope by empowering them to do what they need to do to survive. 

As most of you know, I have experienced discrimination, sexism, judgement, and hateful backstabbing for the way I choose to survive. I've been called an "unfit advocate," a "bad role model," and other things I can't post here. Some of this was from my own rare disease community. My pictures have even been privately and hatefully shared for reasons I can't imagine by people I trusted. It's unacceptable to me, and only gives me fuel to burn longer and brighter.

Sometimes you need to wallow and get attention because you're so lonely. And sometimes you need to grab a sword and shield and run into the oncoming battle screaming profanities and defying fate. 

Neither of those are wrong. So, knowing I have to do these infusions every two weeks for the rest of my life, I wanted to make them the opposite of a chore and something to look forward to. So I tried to figure out a way to combine something I love (pinup and photography) with something that is essential for living. I wanted them to be selfies because I usually go alone. It takes a lot of energy to set up the shot, push the button on the timed camera, and run and pose.

At first, it was fun and easy. 

I was extremely healthy in the beginning of 2015. But a few months in, I began a rejection episode that started making this project really difficult. I ended up in the hospital six times this year, but I never wanted to drop this project. It became the thing that gave me strength to keep going. 

It soothed my friends and family so that it didn't look as if I was nearly as sick as I was. It made the cancer patients around me laugh as I had to run from my phone to the pose twenty times to get the right picture as I awkwardly roll my IV pole with me.

When I was put on chemotherapy for my rejection, everything changed. It was much harder to put on the whole pinup getup, and there were a few shoots I had to do from the hospital, so I had to bring props, heels, and costumes with me. No problem.

Throughout the year I experienced the following medical related issues, some of which are baffling

~Donor Specific Antibody Rejection of Apollo (Matthew's kidney)

~a kidney biopsy of Apollo ( yes I was awake)

~A crazy increase of steroids which brought on my PTSD and manic anxiety ( the apartment got cleaned at least)

~ten different infections due to increased immunosuppressants that required antibiotics
 

~an emergency room visit where I stopped a nurse from letting an entire IV tube of air into my port

~the same emergency room visit where I stopped a different nurse from overdosing me on Benadryl again after I had a huge reaction to one of the IV antibiotics

~an emergency room visit while I was out of town in Columbus for an advocacy event in which I was doubled over in pain I would say was a 9 on the pain scale. I could only moan.

~another kidney biopsy to see if there was any change in Apollo's scarring (awake again)

~a tunnel line catheter inserted in my right shoulder for plasma exchange

~complications from needing too much Demerol in the tunnel line placement surgery that caused me to vomit about twenty times over the next 24 hours. It required an emergency room visit that brought us to three different hospitals because they were all full on a Monday night

~a nasty C Diff infection that was brought on from being on too many rounds of antibiotics (likely the cause of the 24 hours of diarrhea and vomiting)

~four weeks of strong chemo drugs and simultaneous plasmapheresis, all of which occurred while I was playing Lady Macbeth

~an "accidental" poisoning of my kidney by a hospital error that mixed my IVIG in sucrose instead of saline. I noticed the mistake after an hour of severe back spasms I was experiencing. We had to emergency wheel me down to dialysis to get the poison out before it completely damaged Apollo permanently. It was my 35th Birthday.

~a surgery to have my tunnel line removed, my infusaport removed from my left chest, and a new infusaport inserted into my right clavicle

~an infection from the infusaport surgery that combined with a nasty virus, causing me to be knocked out for an alarming amount of time. I had two weeks of fever above 100 degrees, all of which happened while I was performing as Jaqueline Kennedy. I needed a wheelchair to perform the role, which we beautifully incorporated into the show for the first time on opening night

~a blood clot in my right shoulder due to the port surgery that is currently causing me pain in my shoulder and whole arm that feels as if my funny bone is constantly being hit.

After all of this, I started realizing that this photo project was developing into much more. It became my stubborn mission to finish what I had started. It started to feel like someone was picking on me, and the more absurd the medical issue, the more determined I was to take the pictures.


 I wanted to see what I was capable of accomplishing by documenting it with photos. I won't lie. There were days it took everything in me to get up early enough to do my hair and makeup, and I had to learn a lot of shortcuts. But now I'm so glad I did.

There were also just as many amazing things I got to experience this year that I did in spite of all this medical mess.

~I traveled to Washington DC, Pensacola, Salt Lake City, San Francisco, Columbus, Dallas, New York City, Burlington Vermont, Ruston Louisiana, Jacksonville Oregon, Orlando, Pitsburgh, Bartlesville Oklahoma, Tulsa (4 times: some pinup, some advocacy, some both), South Paris Maine, Mississippi, Los Angeles/Huntington Beach, and Chicago

~performed in four productions
~taught Intimacy at two Society of American Fight Directors workshops
~spoke at four different aHUS meet ups and a United Way car show around the country
~entered a pinup pageant and received a judges award

~was showcased on the Stephenson Cancer Center webpage and commercial

~modeled for as many photographers that wanted to work with me.

~was nominated for an advocacy award for Global Genes, and attended the Champions of Hope Gala in California

~swam naked in the ocean at night

~prevented my own death or coma several times in the hospital
~survived

I'm grateful for all of the opportunities I've been able to experience this year, and I think the Pinup Infusions gave me more energy than I would have had without them. Was it all an illusion? In some ways, yes. But in other ways, those pictures are a real glimpse into how I responded to the struggles. I consider it more of a performance art than a lie. It was a performance that fed my soul every two weeks and made some people smile, hopefully to anyone who is reading this. When you don't have a target to punch, you need to release that energy somehow. I can't blame aHUS, because it doesn't help to scrape up anger at an intangible object. I'm realizing that I'll always be a ticking time bomb. This is just my life, and it's never as bad as it could be.

Now that this show is over, I'm on to my next infusion project. 

I truly have a really great life.