The first time it happened in public...

The first time it happened in public was in the South Tower Lobby. Sitting in my maroon wheel chair hugging my bag as if it were a shield, I looked around.... exhausted and gleaming mothers with newborn babes in arms and congratulatory balloons, white coats briskly walking by with gaze hardwired on the elevator and work that lay ahead, Philippinos in hello-kitty scrubs seeming to hum conversations with laughter in reclined leg-leaning, awkward teenagers texting furiously with hair covering one eye while the other would occasionally dart back and forth to scan the room and make contact. And me, the pail, anxious patient in the wheelchair waiting for pickup by the automatic doors. Where was my dad? What was taking so long? Before I could think of possibilities this overwhelming rush of adrenaline filled my body, my muscles began to tighten like over-tuned guitar strings, my neck started arching back and then I knew, I knew it was too late and I knew what was going to happen. My head flung back, my body was wildly convulsing, my limbs curled and shook madly with no control. Immediately I tried to “breath slow” but this was not going to be a short one. Gerry, my CP and wheelchair-pusher with a thick, red horseshoe mustache knew all to well what was happening and held my head in his chest and calmly in a firm voice began to coach my breathing. My tears soaked his teal scrubs, and though his grip held my head (and thus my vision) tightly to his chest, I knew everyone in room was now looking at me... and the awkward teenagers were probably ecstatic to be able to send this video-text to their friends. Finally my body began to calm down and eventually allowed me to slump down in my wheelchair, exhausted, depleted, and mortified.

So... this is my new life.

To explain how I got to this moment, I need to step back a few weeks. Mid-June, my body changed. Completely. Overnight, my stomach felt like it was was being twisted and wrung out like a wet rag and I began to have insane diarrhea, 30-50 times a day. It wasn't long before I was hospitalized for dehydration. What had happened? I was seeming to recover so well. I was at one of the top GI hospitals in the world (and the best on the west coast) so I figured everything would be sorted out soon enough. Well, it wasn't. Exhaustive tests were run, cameras were swallowed, medical team after medical team gave their best shots, and then finally their “Dr. House” was brought in. Everything made perfect sense. I had to have carcinoid-syndrome, a rare type of cancer. It explained everything, the too high or too low hormone levels, the golf-ball sized cyst on my ovary, the low cortisol levels, rapidly deteriorating health, the pain, the insane diarrhea... it all made perfect sense! After running labs (which take 10 days to get back because of their rarity), I began the anti-carcinoid syndrome drugs and was just waiting for the results to lead us as to the next step of finding/removing the tumor.

At this point I was too weak to go to the bathroom alone, and each day I felt like that much closer to death, but the injections were helping with the diarrhea. There was hope. There was a diagnosis.

Days went by, I seemed to get weaker and weaker, but I still had that hope that they could just “fix it” once they layed out the fine print. So now was the waiting game....

Among this, a few nights into my hospital stay I was given some benedryl for some mild allergic reaction. Immediately I felt “odd,” nauseas, frail. I made it back to my bed just in time to start what would be my first seizure. They were violent, unpredictable, short, long (some lasting 25 minutes), scary, painful and oh so exhausting. I remember one long night, after having one, I turned my head over on my tear-soaked hospital pillow, stared at the out-of-focus wall and struggled to ask my nurse, “why...? why is this happening?”

Her comforting words were kind, but they were just that, comforting, not informative. What the hell was going on? 24 hour EEGs were run, more specialists brought in, and then finally after a multi-doctor conclusion, they informed me of the inconceivable. “They are Psychogenic Non-Epileptic Seizures (also knows as PNES). It's a type of... well, Conversion Disorder.” Basically, it's a psychological disorder that happens to people who have undergone some sort of trauma. Some go blind (I occasionally would), deaf, paralytic, or even have seizures... converting internal trauma into something pseudo because of an inability to cope with the internal stressors...sort of an odd way of preservation because reality is too difficult to deal with. Ok. I believe it. It makes perfect sense considering the last few months of my life with traumatic events or diagnoses happening to my children on top off dealing with health issues. This is the truth, I have this disorder, and as difficult as it was to accept in the beginning, I am gaining a peace with it as I know the seizures (and blindness and hallucinations) will eventually calm and cease with persistent psychiatric care. I WILL get better. This is just another illness and I am willing to treat it as such.

Ok, but back to the carcinoid-syndrome... what happened with that?

The labs came back. Dr. Yu (aka: Dr. House) entered the room. With eager ears I waited. “Well... 2 of the tests show that there is NO carcinoid. It must be something else.”

My praying family was overjoyed with the news, but to be honest (and I know how strange this appears), I was disappointed. I was disappointed because we were back to square one. With no real diagnosis, there is no real treatment... there is no hope. I do not want to be one of those patients labeled “failure to thrive” due to a diagnosis of exclusion. I've had chemo, I've major organs removed, and I was ready to do it again if it lead to a hope of a better life.

But there I was, weeks into my hospital stay deteriorating with no direction to go. To explain the inner turmoil that was going on, I think it will help to share an excerpt of an email I sent during my stay:

“...Right now I'm at a pretty low point myself. I've been in the hospital for weeks with still no diagnosis as to why my body is rapidly deteriorating. It's an awful feeling... not knowing if my darling little girls will ever run down the hall at 6am and jump into bed into my arms ever again, probably something you might have experienced, and as a parent, I think there is nothing that can break your heart more than knowing that they might lose the only one in this world that was meant to be their mother. I am so angry and confused at this point, but I know that in this desperation, Jesus is calling me and begging me to let him comfort me right now. I think I've just become detached. Life is so damn cruel sometimes. But I know better, I know our savior and our relationship is still a process and know he has blessings prepared for my family even if I'm not an earthy part of that.”

Soon I began to have a revelation... I didn't have to be there (or even die there if it came to that). After realizing that if the hospital was there to barely keep me alive, well at least I can do that at home and be with my family. So after convincing the Hospitalists that I would receive home-health care, followup with outpatient services, and be mentally healthier at home, I finally came home. So here I am, about a week home (with only one hospital visit). The seizures are improving dramatically, and though my health is still teetering on the edge, I am home.

I am still waiting for an answer, but am getting stronger with ups and downs.

So there... there is my response to everyone who keeps texting or calling me wondering what in the world is going on. I am still very weak, but am going to try even harder to figure this thing all out.

Thanks for all your prayers and kind words during this time. Our family truly thanks you, and thank you to the “anonymous person(s)” for their gift, it's been a huge and well needed blessing on our family.