The Descent Into Chronic Illness Archives

I have very Exciting New for You

Sep 16, 2024

I have created a new option for to enjoy. It’s The Newsletter Option. For a meager $6.50 a month you can receive a Newsletter from me. What will the Newsletter contain? The Newsletter will contain a free chapter of the first book of “How To Save Our Daughter”, a complete book that I am currently searching for a literary agent. To mix things up it may contain one of the first three chapters of Mindful Chapters, a book that a literary agent has picked up. It may include excerpts from my novel…

What Gastroparesis Is: The Full Story of My Diagnosis

Oct 23, 2023

My entire hospital stay ended up being a total of about three months long. I went through a bunch of different phases in that hospital stay, but it all culminated in finding out the answer to the question, “What gastroparesis is”.

During phase one I was a medical patient needing medical care due to a physical illness. I remembered how relieved I had felt when I had achieved this phase.

Then there was Phase Two where I was a psychiatric patient who was experiencing treatment that was bordering on abuse by the psych unit staff. After that came Phase Three, being a surgical emergency. That’s when they raced me in the wheelchair down the hall to the CT scan machine and then pulled me out, put me on a stretcher, and ran me down to the OR.

Phase four was when I was a medical patient trying to find out what gastroparesis is.

I had been telling the nurses on the psychiatric unit that I was in severe pain and that my nausea was intensifying, for a good week and a half before I got so sick. If the nurses had listened to me or checked my vital signs more often, my bowels probably wouldn’t have perforated. But I was just a kid, and I was just a psych patient, what did I know?

A Bowel Perforation That Proved The Truth

Sep 9, 2023

The whole genre of my healthcare had changed when I first woke up, swathed in warm blankets after my emergency surgery for a bowel perforation. I had just been raced over from the children’s psychiatric unit ten hours earlier before my eight-hour surgery after one of the nurses realized that there was something seriously wrong with me.

When she took my vital signs my blood pressure was in the basement and my heart rate was dangerously high. I’d also had a fever of 105.5. Suddenly I’d felt myself being loaded into a wheelchair and raced off the psych unit and into the CT scan suite.

“They need to get a picture of the inside of your belly,” Liz had explained to me when we got to the room where they do the CT scans.

Psychiatric Patient, Anorexic Patient, or Legitimate Patient

Aug 28, 2023

“You can’t purge in the dining room like that!” the counselors and nurses would tell me. “Do you know how triggering that is for the other girls?”

At first, I didn’t even know what purging was, but in therapy groups, I learned it was forcing yourself to vomit to get rid of food you just ate so that you didn’t gain weight, or to lose weight. Then I got really confused about why the counselors and nurses said I was “purging” when I threw up, because I obviously wasn’t doing it on purpose, and I would do anything to gain weight, my body just wouldn’t cooperate.

The anxiety the meals and snacks on the eating disorder unit caused was obvious to everyone.

Dr. Hizami, my psychiatrist on the regular psychiatric unit decided I must have an anxiety disorder and put me on a medication called Klonopin, a benzodiazepine (powerful anti-anxiety/sedative medication.

I completely lost it. Now I was officially a psychiatric patient. It was like someone flipped the crazy switch on me and I turned into a ball of self-destructive energy, smashing my head against walls, biting my arms till they bled, and pulling out fistfuls of my own hair.

The Psych Unit: Surviving a Nightmare

Aug 13, 2023

Hearing the doctor confirm that it wasn’t all in my head brought me so much relief. But the relief didn’t last. After getting admitted to the pediatric medical/surgical floor I went through a battery of testing. Nothing else showed up as a problem and because my parents and home care team continued to insist that I was just a psych case, the hospital finally decided that maybe there really was nothing physically wrong with me.

The final decision was that I was anorexic and would need to be transferred to the psych unit for children in a different hospital, where I would be on a unit for 5 to 11-year-olds but have meals and some groups with the eating disorder unit.

At that point I had a special feeding tube in my nose called an NG tube. It went from my nose down my throat, past my esophagus, and ended in my stomach. The part of the tube that came out of my nose was hooked up to tubing that was connected to a bag of a liquid called tube feed that contained all the nutrition I would need in a day. It ran on a pump that set the rate of how fast the tube feed ran in. Until I could start eating enough calories a day to maintain my weight, I would need to have that NG tube.

My Safety Net

Aug 1, 2023

My mom has been my safety net for my whole life. She just sometimes doesn’t hold my safety net in the right places. When I first got sick she didn’t know where to hold my safety net because the professionals were all insisting that there was nothing physically wrong with me. They insisted that I had an eating disorder.

Because she was holding my safety net in the wrong spot, I fell. Hard. And whacked my head on the floor of an elevator when I passed out after a routine blood test. My dad had to rush me to the ER. At the ER a doctor with a monkey fingerling named Mr. Bananas clinging to his stethoscope examined me.

Pediatric Emergency Room

Jul 3, 2023

My dad’s arms were wrapped firmly around me as he held me while talking to the lady at the desk at the entrance to the pediatric emergency room. About twenty minutes earlier I had passed out in an elevator on the way out of Dr. Monroe’s office. The vampire lady in her lab had just sucked out her usual four tubes of blood from the crook of my arm. When she was done she gave me a unicorn sticker, and I stepped into the elevator. The next thing I remembered being aware of was my dad leaning over me yelling my name in a panic. He had picked me up in his arms like a baby, not the ten-year-old girl I was, and carried me out to the car. I didn’t fully wake up until we were racing down the turnpike toward the hospital.

What is Wrong With Me?

Jun 30, 2023

It was March of fifth grade and I was living off sips of Gatorade. The last time I’d had any actual food was in January. My body was skeletal and looked like I’d break if I slipped and fell. I kept asking myself, “What is wrong with me?” I wasn’t on some sort of starvation diet because I was scared that the food would make me get fat. However, that’s what everyone insisted the problem was.
Dr. Monroe, my pediatrician had started that theory after finding out I was on a high-pressure gymnastics team. To her credit, Dr. Monore had done an abdominal x-ray and some initial blood work. But when her tests came back normal, I asked her “What is wrong with me?”

Playing Food Police

Jun 29, 2023

Jonathan (my 5-year-old brother) was struggling in kindergarten.

“I think he might be on the autism spectrum,” I heard his teacher say to my mom when we went to his classroom to pick him up. The school kicked me out after I got dizzy in class too many times. When they sent me to the nurse’s office for it, my blood pressure would be so low that they would have to call my mom to bring me home and make an emergency doctor’s appointment with Dr. Monroe
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They decided that I couldn’t go back to school until I was eating three meals a day and had a doctor’s note clearing me to return.

That day the teacher pulled my mom aside, my mom sounded angry.

“He is not, autistic” my mom glared at Jonathan’s teacher.

“He needs testing done if he ever wants to graduate kindergarten. At the very least he has severe learning disabilities.” The teacher told my mom, as Jonathan stared intently at a skid mark on the linoleum floor.

It was another whole year before Jonathan got the testing done. He had to repeat kindergarten. But again, Jonathan wasn’t in immediate danger of dying, so my issues were the ones put front and center, and all my parent’s energy was thrown into playing food police on me.

When Your Stomach Fails You

Jun 28, 2023

Everything started at age eight when I stopped being able to eat lunch at school. If you ask a thousand different people with gastroparesis, “What do you do when your stomach fails you?” They will give you a thousand different answers. When I was in third grade my answer was to refuse to eat lunch and snacks anymore.

Of course, this made my parents very anxious, and started them asking me a bazillion questions. I almost wanted to ask them, “What would you do when your stomach fails you?” but I knew I couldn’t talk to my parents like that.

It wasn’t until the end of third grade and the summer of my nine-year-old check-up that my parents really went on high alert. But as soon as I saw Dr. Monroe, my pediatrician, she noticed I had fallen off the growth charts for weight and then was reminded that even though I had barely turned nine I was on the highly competitive level six gymnastics team. Instead of thinking, “What do you do when your stomach fails you?” She decided to plaster me with the eating disorder label and dismiss all possible physical possibilities for my stomach failing me.

The Descent Into Chronic Illness