Chronic Illness is a Vicious Monster
Chronic illness is a vicious monster. Jeff and I knew this all too well. Jeff is the man I met at Side by Side Assisted Living, (my home at age 26). As soon as I laid eyes on him I immediately felt a deep emotional and physical connection with him. Eventually, with some coaching from my caregiver Melody, I had asked him out. He was now my life partner. While my health was going downhill fast, Jeff’s was on the upswing.
In his younger days, Jeff used to drink a 12 pack of Molson Ice before lunchtime. His liver didn’t like this, threw a fit, and then failed on him. His GI doctor sat him down and told him that he had two choices, keep drinking and die, or stop drinking, go on the transplant list and live.
Jeff finally realized how serious things were and he stopped drinking. That was three years ago. Unfortunately, the damage he did to his liver is irreversible. While waiting for his transplant he needed paracentesis treatment to drain fluid collections, called ascites, from his abdomen. His liver failure is what causes the ascites
Keeping Jeff’s Chronic Illness at Bay
When I first met Jeff he had to go to the hospital multiple times a week for paracentesis and his belly often looked pregnant. Now Jeff was needing fewer and fewer paracentesis treatments.
I was also always on his case about taking his Lactulose three times a day. It prevented toxic levels of ammonia from building up in his brain which made him less irritable. It also meant that he had fewer moments of forgetfulness, confusion, or feeling drunk.
It was like pulling teeth trying to get him to take it though. He hated that he had a chronic illness and needed to take meds in the first place. He did still like to joke around and told people he had a damn good time developing that chronic illness. I think the jokes and humor were his way of coping with painful emotional situations. He hated the Lactulose in particular because of how thick, sticky, sickly sweet, and gross tasting it was.
I wouldn’t leave him alone until I knew he had taken his 30 ml of Lactulose three times a day and I would bug him by making sure that he was pooping at least three good poops a day. Only your life partner can bug you about things like that. He wouldn’t even tell the doctors about his poop. But sometimes when he used my bathroom he would come running into my room, help transfer me into my wheelchair, and race me into the bathroom to show me a particular poop.
Roger the Poop
“I named this one Roger,” he would tell me, “he looks like a big long coiled-up snake. Look at how he goes around the whole bowl, he’s a big one. I almost don’t want to flush him.
“You’re ridiculous, Jeff,” I told him. “Who names their poop Roger and then shows him off?” I began laughing.
“Yeah you’re right, maybe he’s more of a Walter.” Jeff mused.,
“Jeff,” I sighed, Roger or Walter, or whoever he is, stinks, Just give him a good final send-off and flush him down the toilet, he’s excited about going down the waterslide round the you-bend.,
Jeff flushed the toilet.
“You’re such a party pooper,” he told me.
“You’re the one pooping out party friends not me,” I told him
He cheekily grinned.
Low Potassium Symptoms
I, on the other hand, could not for the life of me, keep myself out of the hospital. First, I had a septic UTI, then a week and a half later, my chronic illness, small fiber autonomic polyneuropathy flared up. I woke up on life support three days after I went to the ER.
Well, I was home for another week when during one of Jeff and my cuddle sessions, I started feeling pins and needles prickly feelings in my fingertips and cheeks. By then I knew enough about my chronic illness that I could tell that I had a critically low potassium level.
Even before I had even realized it, Jeff knew that I had something wrong with me. All morning he asked me if was okay. This was even before I noticed the tingling. I was confused about why he asked me over and over. He had an almost sixth sense for when my chronic illness was flaring up particularly badly.
Once I noticed the tingling, I immediately dialed Dr. Rose’s number. By now I had it memorized.
“I’m going to call your visiting nurse and have her draw stat labs on you,” he told me. “If they come back that your potassium is slightly low I’ll have the infusion company deliver you a bag of IV fluids with a larger amount of potassium in it. If they’re critically low you’re going to have to go to the ER and probably have to be admitted at least overnight to replenish your potassium,” Dr; Rose told me.
Chronic Illness Stinks
“I hate this,” I told him. “It’s always something. Chronic illness stinks.”
“Yes, but you are amazing, you take it in stride, you keep a positive attitude almost all of the time, and you are so knowledgeable about, and in tune with, your body. I have never had a patient quite like you before.” He told me.
I could feel my cheeks get hot and red as first-degree burns with all his compliments.
“Anyway, let me get off the phone with you so that I can get your nurse over there to draw your blood so that we know where to go from here.”
My heart was racing. Jen got there within an hour. By then I was so shaky and the tingling was even more intense. My whole body was like partially set Jell-O. By then I knew with almost 100% certainty that my potassium was critically low and that I was headed for a hospital stay. When you’ve had a chronic illness as long as I have you learn your body’s tell-tale signs.
“You are definitely looking like something’s malfunctioning in there again,” Jen said when she arrived. My face was pale but my cheeks were flushed bright red.
“It’s my kidneys,” I explained to her. “They refuse to retain potassium, even now that I have that bag of sugar water with potassium, saltwater, trace elements, and vitamins running into me constantly. I just can’t win”.
Low Blood Pressure
“Well, let’s start off by checking your vital signs.” She suggested.
I felt like we were just prolonging the inevitable, I knew with my chronic illness flaring up, none of my vital signs would be normal.
She wrapped the pediatric cuff around my arm and proceeded to pump it up. When she deflated it she shook her head.
“Well even if your labs aren’t critical I’m still going to have to send you to the hospital.” She told me.
“Why?” I asked, afraid to know how low my blood pressure had bottomed out.
“Your blood pressure should be around 120/80 and it’s 72/38.”
“Is she going to be okay?” Jeff asked.
I could sense fear in his voice, nothing ever phased Jeff, Right now, however, his voice tremored slightly. That in itself scared me more than anything else. I could feel his arm wrapped around me in my hospital bed at home. They tightened slightly. It was almost as if he thought if he held me tightly enough he could protect me from the chronic illness monsters. We were currently both acutely aware that our brands of chronic illness were life-threatening and life-limiting.
“We are going to do everything we can to get her back to baseline,” Jen said to Jeff.
Low Oxygen and High Heart Rate
She slipped a pulse ox on my finger and pulled out a stethoscope to listen to my heart and lungs.
I looked down at the reading on the pulse ox. My oxygen was only 89% and my heart rate was 158. Jen looked at the numbers too and wrote them down.
“What do those numbers mean? Is she going to be all right? Jeff asked.
“Well, her oxygen level should be between 95 and 100%, so I’m turning up her oxygen from 3 Liters to 4 Liters until the ambulance can get here. A normal pulse is between 60 and 100 beats per minute, but her normal is around 110 to 130 beats per minute. That is still way lower than 158. There is something very wrong with her, but we will draw her blood while we wait for the ambulance to get here, it will be processed stat and then we’ll know exactly what to do to help her feel better,” Jen assured Jeff.
Another Hospital Stay
“It’s my potassium, it’s critically low,” I told Jeff and Jen. “It’s happened before and this is exactly what it felt like, I just need a whole bunch of potassium and probably some magnesium infused into me.”
“I’m going to call for the ambulance now and then quickly draw a metabolic panel including potassium and magnesium and Dr. Rose has it ordered stat so that once you get to the hospital they should have the results,” Jen said to me,
Sure enough, my potassium was critically low, and my magnesium needed to be replaced too. I stayed in the hospital for three days while the doctors straightened out my electrolytes. Dr. Rose played around with my maintenance IV fluids while I was there.
“I don’t know how you handle this so well,” he told me again.
“I don’t have any other option,” I explained. “Stuff happens, I am in the end stages of a severe chronic illness. I can choose to look at all the negatives about it, or I can look at everything I do have in my life. that I appreciate. That’s what I can focus on. Then I can make a conscious choice to be happy. I have the best man in the world as my life partner. He is the most loving supportive person I have ever met. As long as we’re together I can deal with anything,” I told Dr. Rose
Being Grateful For What I Do Have
The more I thought about being grateful, the more things I was thankful for popped up in my head. I never get tired of Jeff’s company. We never run out of things to talk about, but we are also okay just sitting together in silence just drinking each other in without feeling awkward. He loves me unconditionally, and I love him unconditionally. My mom now understood my illnesses and came up every single week to visit me and bring me things like homemade vegetable broth, Gatorade, and Iced teas that I could drink and then immediately drain out my G tube. There was my caregiver Melody who knows my care backward and forwards. She always makes sure everything is done right. She is more than someone who works for me. She’s like an aunt I never had.
Lauren was another story. She kept calling out to go stay with her boyfriend in New York City. Or she would make up ten different excuses about why she was so late. Sometimes she would say that she could come but she would have to bring her son too. Jeff immediately said no to this and that he would rather do my care himself instead of having that monster kid come back over. Some of the time Melody could cover her shifts, but not all the time.
I have days where I can be up in my wheelchair for hours and do a lot of normal, everyday activities even though I have a chronic illness that will never go away. There are days that I produce a lot of good quality writing. I am making money off of royalties from the book I published in 2008.
I Am Chronically Alive
Yes, I have a degenerative illness, yes, I can’t eat anything by mouth and am not really doing well tolerating tube feeds, yes, I have lost a lot of weight recently that I didn’t have to lose, yes, I am in terrible pain and have debilitating nausea every day. Yes, my balance and mobility are getting worse and worse and I am almost at the point where I can’t bear any weight during transfers.
But I don’t focus on all that stuff. I am chronically ill, but I am also chronically alive.
“I really wish all of my patients were like you,” Dr. Rose kept telling me. “You’re a force to be reckoned with.
Once I got home from my third hospital stay in October I was looking forward to Halloween. I had a Minnie Mouse costume and Melody had promised that she would take me trick or treating with her kids.
Trick or Treating and Types of Judaism
I had only gone trick or treating one other time in my life. Growing up as a Modern Orthodox Jew my family didn’t believe in it. As a young adult, I leaned more toward the Conservative Jew side. I had to drive to the synagogue on Saturdays. The fact that in Conservative synagogues men and women were considered equals and there was no separate seating appealed to me. One of my favorite things was that I could go up to the Bimah and say the blessings over the Torah myself even though I was a female. As a Conservative Jew, I felt more comfortable celebrating a holiday that was really just a commercialized public American way to have fun, dress up, and get candy. It had nothing to do with any religion anymore.
The one time I went trick or treating I had a great time. It was with Jackie the year before. She helped me get all dressed up in the coolest Poison Ivy from the comic Batman costume. Jay her boyfriend had come along too. Jay had been a pretty cool guy. He suffered from ulcerative colitis and had grizzled through multiple surgeries and hospitalizations as well. We spent quite a bit of time trading chronic illness stories. Jackie and Jay pushed me all around town until I had an overflowing Hello Kitty pillowcase full of candy.
Halloween Excitement
When we got back to the house, I had divided up the candy between Jackie, Jay, and Jeff. It had been so much fun getting all the compliments on my costume, seeing everyone else’s costume, and how much candy I could possibly get. It didn’t even really bother me that I knew I couldn’t eat the candy, it was just fun collecting it.
This year I started counting down the days until Halloween, I got my costume all ready to go and even tried it on a few times. That way I could figure out how to style my hair the best with the costume and to see if there were any accessories that I wanted to add to it.
Then the morning of Halloween something terrible happened.
Starting the Transfer Into Bed
Jeff was transferring me back into bed after we had returned from the store armed with a sugar-free Iced tea for me, a bag of chips, a bag of gummy worms, and a sub for Jeff.
The plan was for both of us to get in bed and watch the third Bad Boys movie. Jeff was all excited about it.
“You’re going to love this one,” he was saying. “It has all of the characters from the first two movies, but this one is even funnier and the plot twists are even better.”
I didn’t have the heart to remind him that we had already watched this movie three times together. He was too cute getting all excited about having me watch it for what he thought was the first time. His brain injury tended to affect his memory. Besides, it really was a good movie, it had a lot of really funny parts, and a lot of edge of your seat action parts as well.
Jeff took my IV bags and pump and feeding tube bag and pump off the IV pole on my wheelchair and then put them on the IV pole near my bed. Then he put his hands under my arms and started to lift me up out of the chair and onto my feet so that I could stand and pivot into bed, but all of a sudden I smelled blood.
A Grand Mal Seizure
A split-second feeling of dread came over me. That smell of blood was my aura, my sign that I was about to have a grand mal seizure. I had no time to react. Suddenly I felt like was falling through bumpy darkness, everything felt very bumpy, I was briefly aware of the feeling of my head bouncing back and forth against the metal railing on my bed, and then there was softness, and then falling through bumpy darkness as light and dark flashed before my eyes.
Then finally the bumping and flashing stopped and I was lying in bed. Jeff was almost on top of me, holding me down on the bed, he was talking on the phone.
“Yeah 120 Onota Street in the back building at the bottom of the hill. She was having a grand mal seizure. At one point her head was hitting the railing of her bed and she started to slide out of my arms, so I picked her up, put her in bed, and was holding her until the seizure stopped.
“Are you awake Becca?” Jeff asked me.
I mumbled the word, yes but everything felt so heavy and far away. All I wanted to do was close my eyes and go to sleep, but I realized that I must have terrified poor Jeff who had apparently just saved my life by stopping me from bashing my brains out on my bed’s side rail. If I let myself fall asleep he would freak out
“I’ve never been so scared in my life,” Jeff said. After he got off the phone. “For a few seconds, I thought you were going to die or something. There’s an ambulance on the way.”
The Postictal Period
Thank you so much,” I said, drawing my words out slowly. I was so exhausted that I felt drugged.
“Well, I couldn’t let the love of my life smash open her head on my watch,” he told me. “I don’t freak out in an emergency, you have to stay calm, cool, and collected and just do what’s necessary. Later when it’s over you can go back over it in your head and go ‘Fuck, that was some crazy shit!’ But you needed me to react calmly so that I could think straight, so I picked up your thrashing body, put you in bed, and held you there while I called for an ambulance. Thank God you come in the child-size version. It was hard enough getting you in bed while you were thrashing and jerking like that.”
I could hear Jeff talking but was so tired that I couldn’t bring myself to come up with a return response.
It took EMS a whole fifteen minutes to get there.
“Thank God you’re not still seizing or we would have his and hers traumatic brain injuries.” Jeff joked.
Dealing With EMS
When EMS finally got there I let Jeff tell the story of what had happened,
“She looks pretty postictal right now,” agreed one of the EMTs. Referring to the state you go into after a seizure where your body is just completely drained of energy for anywhere from minutes to hours. Seizures, especially grand mal seizures, are quite exhausting to the body they use all of the body’s muscles and engage them very violently.
I didn’t really want to go to the hospital, but I knew Jeff would worry if I didn’t go, and I knew I was extremely postictal and would not be able to even roll over let alone move from the bed for at least an hour but probably way longer.
“Do you want to go to the hospital?” One of the EMTs asked me.
“Yes,” I said, but I was so exhausted that my voice came out as a whisper,
“What did you say? The EMT asked.
“She said she wants to go,” Jeff told them.,
“Is that what you said?” the EMT asked.
I nodded my head. Even that simple act drained me even more,
They grabbed onto the soaker pad that was underneath me, one EMT on each side, and slid me with the pad from my hospital bed to their stretcher.
Going to the Hospital
I was in and out the whole ride to the hospital. Vaguely, I remember them placing an oxygen mask over my face and calling in report
“Two-six year old female well known to your facility.”
Before they pulled me out at the hospital, they tucked my comforter that Jeff had made sure went with me, all around me to keep me warm from the cool October chill. I clutched at my bear Griffin who Jeff had also made sure went along with me. Then they rolled me into the hospital where the fluorescent lights were on so bright you could never tell if it was day or night. The squawking monitors were a constant background noise that you just had to learn to tune out or it would drive you, in Jeff’s words, “absolutely batshit crazy.”
When the EMTs transferred me from their stretcher to the hospital’s ER gurney, they tried to take my own soaker pad out from under me so that it wouldn’t get lost with the hospital’s bedding.
How I Pooped My Pants
For a few seconds, I was mortified when we realized that during my seizure I had pooped all over the soaker pad. That meant I had pooped all over my pants and underwear as well. I just prayed that I hadn’t pooped all over the bed Jeff and I had been lying in too.
Then I realized I was being silly. Jeff wouldn’t care. Jeff loved me unconditionally, chronic illness and all, and I loved him unconditionally, chronic illness and all. I never got mad at him when his Lactulose made him have an accident in bed. There would be absolutely zero reason for him to get mad at me for having an accident in bed. I probably had just contained the accident to the soaker pad, my pants, and underwear anyway.
“The nurse or aide will help clean you up,” The older EMT with the balding head and the gray goatee said. He saw me looking at the poop on the soaker pad. “In the meantime, we’ll put this in a patient belongings bag so that your boyfriend or one of your caregivers can wash it for you.”
A Reassuring EMT
He took the pad in his gloved hands and rolled it up so that the poopy side was facing in. Then he grabbed a white plastic bag out of the closet to put it in.
“Most people who have seizures have accidents,” he assured me. “It makes perfect sense that that happened.”
My foggy postictal brain did remember now that this had happened during previous seizures, but it didn’t matter, it embarrassed me every time. At 26 years old I shouldn’t be having accidents, chronic illness or not. Those were my thoughts about it anyway. I’m still having accidents today at 32, only now they’re even worse. By now I’ve learned to accept them. They’re just part of being chronically alive.
Getting Registered, Triaged, and Tested
After the EMTs left someone came in to register me. They asked me the usual questions about what my address, phone number, email address, religion, next of kin, and health care proxy were. Then she wanted to know who I wanted to be notified in an emergency and if I wanted my name listed on the patient registry.
At that point, I was still so postictal that I don’t even remember how I answered or what I said. Somehow the end result was I told her I gave verbal consent and she snapped a hospital bracelet around my wrist.
By the time the nurse came in to do her triage assessment, I was out cold.
I woke up briefly to a nurse’s aide wiping my bottom and putting a pull-up she must have grabbed from the pediatric floor on me.
The next time I woke up, a nurse was standing over me drawing blood from my port.
“You are one sleepy girl,” she told me.
“I always get tired after seizures,” I told her.
“Well, we’re drawing a prolactin level which should tell us if this was a seizure or something else like a psychogenic seizure. We also are going to do an EEG next.” She explained.
I bristled at the fact that she would even question whether I’d had a real seizure. Ghost feelings from the past were rising up as she speculated on whether it was possibly a “psychogenic” seizure. Why was it that people loved to blame things on psychological causes for me?
“You’re Too Young to Have All of These Problems”
Actually, I knew why, it’s because I looked young. If you looked past the wheelchair and all of the tubes coming out of me, I looked healthy. I was always smiling so it was hard to fathom that someone like me was living with the end stages of such a severe disease. I didn’t want to change any of that. All I wanted was for people to be able to hold the dialectic in their hands that yes, I was young, yes I looked healthy, yes I thought positive, but I was going through chronic illness hell that only had one end to it. That end was creeping closer and closer. It would be joining my maternal grandfather, my best friend and old piano teacher, and my Uncle David in heaven.
Once the nurse drew the blood I was starting to wake up.
Getting an EEG to Check for Seizure Activity
A transport tech came to take me to a room where there was a space for a stretcher and a whole bunch of leads and glue.
My first thought was, “how am I going to get all of these leads and glue out of my waist-length dark blonde hair when I finish the test?”
Melody was going to have a job cut out for her.
The man doing the test was very kind and not at all perturbed by the fact that I kept nodding off. He glued lead after lead into my beautiful carefully shampooed, conditioned, brushed, and french braided hair. Now it was just a wild mess.
“All right,” he told me when he finally finished gluing the last leads in. “Now you just lie here for an hour. For the first half-hour you just lie here and rest and the EEG will just record your brain waves, then I’ll introduce some stimuli and we’ll see how your brain reacts to that.”
PTSD Thoughts of Medicalized Trauma
I lay down through the entire hour-long test. Thoughts of frustration ran through my head over the way that nurse had suggested that my seizure was psychogenic. It was almost like it was triggering a PTSD reaction in me. My chronic illness had been dismissed as psych issues one too many times. I tried to take my mind off the dumb nurse’s comment, but all I could do was lay there and not move so that the guy could watch my racing brain waves on an EEG.
At the end of the test, the guy pulled all of the leads out of my hair. I was left with the worst bad hair day of the century. This was driving me nuts because it was the only part of my body that I liked. It was the only part of my body that I could control.
Finally Meeting With the Doctor
By the time the doctor came in to meet with me, I had been at the ER for five hours and was wide awake.
“You had a grand mal seizure,” he told me.
I almost laughed. Without going through an additional 8 years of school I could have told him that five hours ago,
“You’re prolactin levels are quite high and your EEG is still showing some mild seizure activity. These two tests tell me that what you had was a very intense grand mal seizure, how are you feeling now?” he asked me.
“I still feel a little postictal, but I’m coming out of it,” I told him.
“That’s good,” he said, “I’d like to at least admit you overnight. That way the neuro folks can take a look at you in the morning and figure out why you had the seizure and if we need to adjust your Keppra dose or anything like that. This was a really major seizure. Had your boyfriend not reacted the way he did, you could have sustained massive brain trauma from hitting your head on the side rail of your bed, from falling to the floor, from having such a prolonged seizure, or from hitting something with any part of your body. You tell that boyfriend of yours that he saved your life.”
Jeff and Two Packages of Lifesavers
Jeff came to visit me the next morning at the hospital. As usual, he waited until no one was around and then climbed in bed with me. I gave him a big hug.
“The doctor in the ER says to tell you that you saved my life, I own you one,” I told him.
“I’ll take a spearmint Lifesaver then,” Jeff told me.
I laughed and leaned over and kissed him on the lips. He leaned into the kiss and wrapped his arm around me pulling me in for a hug,
“I would even settle for a peppermint Lifesaver,” he whispered into my ear.
“I’ll get you a whole package of each,” I whispered back.
Then I rested my head on his shoulder. I might be missing trick or treating, but as I lay there with Jeff, it didn’t matter what chronic illness had stolen from us. We just lay there happy to be together and ready to face anything the world was going to throw at us.