We don't know what triggers it. Food was a popular theory for a long time. The drugs were a candidate for awhile, which never made since because the drugs came after the attacks started. Stress and anxiety associated with possible psychological issues stemming from childhood trauma is something to consider but in the mean time it doesn't resolve the physical pain issue. We just didn't know.
When an attack happened, it was never expected. She would get this look in her eyes...
My mom is a therapist and when my sister was a little girl with the chicken pox, our mom guided her through a meditation to try and distract from the itching. She led my sister through the process of creating a happy place inside the only part of her body that didn't itch, her big toe. She built and decorated her perfect room, a place that she has re-decorated and re-designed several times throughout the course of her life.
The expression of absence and the far off stare in Heather's eyes always looked to me like she had gone into her body the way my sister would go into her toe. But it wasn't the same way. My sister meditated to retreat to a happy place in her mind. Heather was searching her stomach for what might be wrong. It was a dark place, and in that dark place, searching for something while not knowing what, panic can quickly set in as the pain and the nausea increase.
Sometimes she would get the look and then mumble, "oh shit," and run to the bathroom to vomit. Other times she would start to wince. Her eyes would squint shut and the corners of her mouth would curl, revealing her tightly clenched teeth. She would wrap her hands around her abdomen and hold on as if she were going to explode. She would start rocking back and forth.
She collected a series of sayings, mantras really, that she would mumble and scream and shout:
"Make it stop."
"Please help me."
"I just want it to stop."
"Why is this happening?"
"Why won't it stop?"
"Someone please help me. Make it stop."
"What did I do to deserve this?"
It was horrifying. Since I didn't know what was causing it, or how it felt, I would start to get scared that she might die. I worried that there was some obscure part of some organ that might rupture at any moment. That's how much pain she appeared to be in.
We never knew what else to do, we went to the emergency room, and we would go to whichever one was closest. The hospitals we went to her all part of the same, massive hospital system. For legal reasons, let's call this health care industrial complex, "1-Star." 1-Star had hospitals all over the area. 1-Star hospitals are the only hospitals, they have a monopoly, so if we went to an ER, it was a 1-Star ER.
In the first few months, January 2011 to March 2011, I think I managed to keep accurate count of 16 visits to the ER. They all tended to go the same way. First a tech had to find a vein.
"I'm a really hard stick," she would try to explain. She had learned from all of her surgeries early in life that she has thin, shallow veins that "roll" (move) easily. This part always makes me squeamish. Something about needles makes my stomach turn. The tech would nod and say they understood, and often they really didn't. There were a lot of misses, a lot of techs and nurses that had to go find someone who was better at this than themselves, needles that were too big, veins that would roll...
After awhile, when Heather was in too much pain to speak, I would be the one to tell them.
"She's a really hard stick. She has thin shallow veins that roll easily. You might need to use a smaller needle, a 22 I think." I learned to quickly tell them that she would need, what I called, "the resident IV Ninja." Every ER has at least one IV Ninja and everyone who works in that ER knows who it is. Ask for them by name.
This is when I got in the habit of leaving the room, when they were trying to draw blood and get an IV started to rehydrate her. I'd go to the vending machines or the cafeteria or out front (off hospital grounds) to smoke a cigarette and call her parents.
Back in her room, the doctor would come in and the conversation with Heather would go like this;
"Say's here that you have sarcoidosis and gastroparesis?"
(Between winces and moans) "Yes"
"Where does it hurt?"
(Indicating with her hands) "Upper gastric."
"Does it hurt when touched?" They always ask as they press on her belly.
"YES!"
"Alright. Well, all your tests came back negative."
"They usually do."
"Do you think this is your gastroparesis?" In both of our heads we were thinking, You're the fucking doctor! Why are you asking me/her?
"I don't know."
"I know gastroparesis can cause discomfort, but it shouldn't cause this much pain."
"That's what they keep telling me."
"Okay. Well I'm gonna give you another milligram of Dilaudid and see if we can't let you go home."
This conversation is another one of those things where I've heard it so many times that they all blend together in my head. Men and women doctors, taller, shorter, older, younger, foreign, native, black, white, middle eastern, asian, compassionate, distracted, overwhelmed, cynical, jaded, polite, and apologetic doctors all without real faces or names of their own anymore. At least not for me.
They would give her the drugs and the pain would subside and we'd go home.
The Dilaudid left some ugly side effects in it's wake.
On the ride home, Heather's depth perception would be off and she would often suddenly brace for impact as though we were about to crash. She would gasp, startling me at times, then she would apologize and rub her eyes to try and fix them.
For a day or so afterward, she would be really irritable. Sometimes she would snap at me about some comment I'd made or angrily scold me for failing to clean something up or put something away. It doesn't seem that bad, but like I've said before, we never fought. It was her tone, it would change to have this sound of disgust and repulsion. When I'd say something about it, she'd shake her head as if there was dust that she could shake off of her brain. Sometimes she would cry as she apologized and reminded me that the drugs made her feel that way.
So after the visit that got her admitted, when they told her parents that her problem was withdraw, Part of me was excited at the prospect of taking her off the medical grade heroin that was making her miserable.
But she was back in the same 1-Star hospital less than two weeks later, admitted, being given 1 mil of Dilaudid every few hours to try to control her pain.
Her gastroenteroligist visited her in her room. This was the man that first diagnosed Heather with gastroparesis. His name was Dr. P. Dr. P sat in the corner. He was an older man, thin and smaller than me but even more so because he slouched. He looked broken to me. He seemed curled up, like a child in time out. He just kept shaking his head. He had essentially come to apologize, he just didn't know what this was. He didn't know what else to do. We looked for another gastroenterologist after that.
Shortly after he left, the hospital doctor came in. He explained that Heather's gallbladder was not functioning properly. They had noticed it through some scan or test or something like that. He said that it was only functioning at about 15%. He couldn't be sure that this was the source of her pain, but there's a good chance that it was going to have to come out at some point in her life, so why not now.
It's called a cholecystectomy. Say it with me class; Cole-is-ect-a-mee. Good!
The make an incision beneath the belly button and two on your side and teach in with these...well, here:
After the surgery, the same doctor came in and asked how heather was doing. The pain had not stopped. He told her, "Well, at this point, at this hospital, there isn't much more that we can do for you. You should probably get a second opinion from somewhere like (names changed for legal ass-coverage) Teds Rukspins up in Northtown or The Ketsup Hospital out in North-mid-west."
Having an entire hospital tell you they're out of ideas and that you should go somewhere else, can be crippling to your optimism.
The Ketsup Hospital was too far away. Heather sent a request to be seen at Teds Rukspins and found a new gastroenterologist.
Our wedding was set in a little more than a month.
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