Chronically Alive Blog uses my life story growing up with multiple medical issues, to help provide hope, inspiration, and validation to others with life-threatening/life-limiting illnesses or terminal illnesses
Low Blood Pressure, Shock, and the First Adult Doctor
I struggled with low blood pressure my whole life. It wouldn’t have been so bad, but I also struggled with tachycardia (too rapid heart rate) my whole life as well. The two issues combined were a recipe for hypovolemic shock. When I went into hypovolemic shock, we called it bottoming out. It was one of the reasons I was admitted to the hospital so frequently.
“Any time you know you’re bottoming out, that’s an automatic 911 call”. Dr Oster had told me.
I could always tell when I had low blood pressure and a high heart rate and was going into shock. My skin would turn bluish-gray and I would alternate between having chills and hot flashes. The world would start trying to pin me down. Exhaustion would overwhelm me along with a pull towards the darkness of the unconscious.
No matter where I was when the low blood pressure hit, I would have to call for an ambulance. If I was at home it wasn’t the biggest deal in the world, but if I was in an embarrassing place it was awful. Pretty much anywhere in public fell under the category of an embarrassing place. The more people around, the more embarrassing it was. Sometimes I would need to call an ambulance from art class. Other times I would be at the mall or the park with friends.
Losing Weight and Sanity
When I was fifteen I finally fell off the growth charts for weight. I had been teetering at the fifth percentile for a while, but at fifteen my weight dropped so low for my height that I completely fell off. Due to my gastroparesis anything I ate, I vomited back up. If I didn’t puke it up it sat in my stomach without getting digested for days, it it got digested at all. Because none of the typical treatments for gastroparesis were working it was no surprise that I was rapidly losing weight.
I had tried all the medications they made for gastroparesis, I had tried a million different diets, and I had tried meditation, but nothing worked. On and off I would have NJ tubes placed, but the NJ tube feeding gave me really bad diarrhea and I couldn’t absorb certain nutrients through my digestive tract anymore. Besides, at the beginning of the year when I was fifteen and losing weight rapidly, I didn’t have an NJ tube in.
About all I could tolerate in a day was one Pediasure and one Pedialyte.
Dr. Sampson and Dr. Kaye had a little conference about me and then Dr. Kaye called up my mom telling her she wanted me to come in for an appointment.
Abnormal Heart Rhythms and Lost Dads
I lay down on the crinkly white paper on the exam table in Dr. Oster, a pediatric cardiologist’s exam room. I was now thirteen years old and Dr. Kaye, my adolescent medicine doctor was really worried about me. Apparently, my heart had been going into some abnormal heart rhythms. Dr. Oster wrapped a child-size cuff around my upper right arm and let the automatic machine inflate and deflate it. My blood pressure was 96/52 and my heart rate was 122.
Usually when I was lying down it was around the 120s, so that was pretty typical for me. Then when I sat up it would bounce up to around 135 or so. When I stood up it would hit the 150s.
I knew nothing about abnormal heart rhythms. Neither Dr. Kaye or Dr. Oster ever told me anything specific about something being wrong with my heart, but that day at Dr. Oster’s office, after he took my blood pressure and heart rate lying down, sitting up, and standing, I read it right off his face. After he left the room for a moment I looked it up on my phone. A normal heart rate for a teenager is 60 to 100 beats per minute, and it shouldn’t fluctuate like that with changes of position.
When Dr. Oster returned he told me that my heart was beating in an abnormal heart rhythm called tachycardia and he would need to run some tests on me. I was not surprised.
Partial Hospitalization Program and Trauma
After I bombed at regular middle school, the partial hospitalization program was like a rescue jet to take me to safety. Originally I had gone to the local private Jewish Day School, but they had really small classes. Plus all the other kids had been together since kindergarten. I had just moved to Massachusetts so I didn’t fit into the giant clique that only left out one other girl who didn’t care because she always had her nose in a book and was oblivious to the world around her.
I had gone to most of the sixth grade but bailed toward the end of the year when I couldn’t take the bullying anymore. The partial hospitalization program probably would have been a good idea then. Instead, I went back for the beginning of seventh grade, but again, didn’t last long. My gastroparesis flared up which stressed out my parents, who, big surprise! Tried to blame it on psychological causes, even though I’d had extensive testing done at the hospital when I was ten showing that I have one of the most severe forms of gastroparesis possible.
A Developmental Delay and Autism
Looking like a five-year-old and being on the autism spectrum causes big problems when you are in sixth grade. I think very concretely and have difficulty understanding other people’s emotions. My autism spectrum disorder causes a developmental delay but I have a genius-level IQ.
My interests were less in make-up and boys and more in pretend play with my kitchen set, toy cash register, mini-brand foods, stuffed animals, and other toys. Every day I carried a different stuffed animal around with me wherever I went. If I didn’t have one in my arms, I would panic.
The other kids in my class had more sophisticated senses of humor, but I still thought jokes about poop and pee were funny. At home, I would still have meltdowns and throw major temper tantrums when I got too overwhelmed and didn’t know how to regulate myself.
What Gastroparesis Is: The Full Story of My Diagnosis
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
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
“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
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
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
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?
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
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
.
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
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.
An Eating Disorder That I Didn’t Have
I can trace my descent into chronic illness all the way back to age eight. Up until then, I was actually a healthy kid. Until then there was no mention of hospitals, tube feeding, IV nutrition, terminal illness, or unrelenting pain. None of that. Back then there was no talk about me having an eating disorder.
The first sign of any issues occurred in third grade when I began suffering from frequent pounding headaches.
Another early sign of something amiss was how dry my body was. If I went a couple of hours without sipping on a drink I could put a finger in my mouth and move it around, and my entire mouth would be bone dry.
My skin began to get very dry as well, and I noticed something odd, I no longer could sweat, no matter how hot the temperature was.
Even my eyes were super dry to the point where it made my vision blurry.
Nursing Care and a New Face
My current nursing care team was only made up of two people. Laurie, my PCA, and Jackie, my nurse. However, about a week earlier, my nurse Jackie had dropped the bucket of bad news over my head. She was going back to school to become a nurse practitioner. After posting a whole lot of Facebook ads and interviewing three to four nurses, I made contact with Melody. As I tried to describe the nursing care I required in medical terms, Jeff butted in. He gave her the rundown on what I was like and how my care worked. Jeff described me as some sort of high-tech, inflatable Barbie doll toy. He explained that I needed to be hooked up to charge overnight.
Melody grinned at me, “I’m up for a challenge! I’d like to do more than just provide nursing care and keep you alive. I’d like to see you thrive. If you decide to hire me, we can do lots of awesome stuff together. We can drive down to see your parents and grandparents. Other times we can go to the park with Jeff to race remote control cars. Or we can go to the mall to shop at The Children’s Place or Justice. Sometimes we can even do art projects together. I would really love if you could share some of your writing with me!
My Goodbyes and the Gift of the Present
My love for Jeff went beyond any love I had ever felt before. I just wasn’t aware of it. What I was aware of was the fact that goodbyes are one of the hardest things in the world, and I never wanted to have to say my goodbyes to Jeff.
All of Jeff’s doctors assured us that he was at the top of the liver transplant list. They kept telling us that he and his mom could get a call any day to drop everything and rush down to Umass Memorial Medical Center to be prepped for the most major, most life-changing surgery of his life. A surgery that could take his life span of months to a couple of years at the most, and add a lifetime onto it.We were in a race against time. There was a strong possibility that his liver cancer had returned. We were waiting on an appointment with a GI doctor, Dr. Xander to go over his scans. The even more frightening reality was that if his cancer actually had returned he would be immediately removed from the cancer list. I might have to say my goodbyes to him. I usually tried to put all thoughts of his mortality out of my head and just enjoy him, in the moment.
Build-a-Bears to Hold Our Love
Jeff was a 41-year-old man with liver failure who was barely hanging on the transplant list. He lived at an assisted living facility called “Side by Side”. I was a 24-year-old girl dying from a rare neurological disease. Since December 2015, I had been living at Side by Side as well. We both adored Build-a-Bears. Jeff and I were an unlikely romance but we were both desperately in love with each other
Originally I thought that Jeff and I were just best friends. Due to a physical and developmental delay that according to my doctors
“Seems to be a much less dramatic form of Syndrome X, it’s an extremely rare condition that I can’t figure out whether or not is connected to her autoimmune-mediated autonomic SFN.”
I didn’t produce adult hormones and I didn’t age past the preteen stage, the only times I’d ever fallen in love with before were with my Build-a-Bears. However the night before, I’d had a talk with Melody, my main PCA (caregiver). She helped me discover that my feelings were more than just friendship.
A Date With Jeff?
Having Melody work for me, turned out to be the best thing in the whole world. Without Melody, i never would have even dreamed of going on a date with anyone. Because of my developmental and physical delay, I didn’t get a period or have adult hormones in my body. This meant that I didn’t feel the same attraction to boys or men that most other people my chronological age felt. But I would never grow to fully be an adult, and Melody wanted to make sure I experienced every wonderful part of life.
Sometimes when Melody came to work she had to bring her two kids, Max and Jared. They didn’t have to come with her every time, but when they did I didn’t mind. Max was eight and Jared was ten. Melody would just sit them in the beanbag chairs in my living room.
“Don’t touch anything except the beanbag chairs and your Nintendo Switches,” she would tell them.
Her thirteen-year-old daughter Serena would tag along to keep an eye on them.
“Max and Jared have a lot of mental health issues. They both have bipolar, ADHD, an attachment disorder, PTSD, and Oppositional Defiant Disorder….”
Tube Feed and Lost Independence
Even though I was only twelve years old, I would then proceed to give myself all my own medications. This was not an easy feat. I had to crush all the tablets with a pill crusher. Then I had to open all the capsules and measure out all the liquids. After that, I had to mix the slurry of medication with hot water and draw it up into a syringe. Then I had to draw up a second syringe of 10 ml of water. At a slow steady rate, I had to inject the medication into the end of my NJ tube. I followed up the meds with a syringe of water. At that point, I hooked the end of my NJ tube up to the new bag of tube feed. The tube feed was all ready to go. I just had to hit start on the feeding pump. Then I put the NJ tube feed and pump into my backpack and was ready to go.
Cancer or Not?
After Rosh Hashanah, the Jewish New Year, my mom drove Jeff and me back to Side by Side and life went back to its daily rhythm. However, the specter haunting the unspeakable background of our minds was the question of whether Jeff actually had cancer blooming within his belly. Would the presence of this possible cancer permanently remove him from the liver transplant list, which was his only chance at long-term survival?
Jeff had an appointment with Dr. Xander, his GI doctor coming up.
We tried to distract ourselves from the appointment by working on the “Intro to Judaism Class”, watching movies, and playing with our teddy bears, but no matter what, time was ticking by. It was only a matter of time before it was November 2nd and we found out whether or not Jeff really had cancer.
Love Trumps It All
After meeting with the Rabbi to go over what it will take to convert to Judaism, Jeff closes the door and turns to me. .“You are the highest maintenance girlfriend I have ever had. I am about to get naked in front of some crazy rabbi who is going to make me stick myself in the dick with a fucking blood sugar testing needle and then go skinny dipping in a collection of rainwater while singing prayers in a language I don’t know and know I will never be able to learn. Before I do that I’m going to have to sit through eight weeks of classes that I won’t be able to focus on or comprehend. The craziest thing is that I am going to do it all because I love you more than I can even express with words.
Convert To Judaism: Jeff’s Story
One day Jeff and I were lying in my bed playing Mad Libs. When out of the blue Jeff told me that he wanted to convert to Judaism.
“You what?” I asked shocked.
“I want to convert to Judaism,” he repeated.
“That’s like a major life-changing project,” I told him stunned.
“Whatever it takes, I will go to any lengths in the world to be with you. Your family is so important to you, and I know that. You can’t hide from me the fact that they don’t want us to be together because I’m not Jewish. The last thing I want to do is screw up anything with your relationship with your family. I want to be part of your family,” he explained.
“Well, I guess the first step would be starting to go to synagogue with me,” I told him. In the happiest state of shock possible.
Every Saturday I used the tickets my mom bought me for the handicapped bus to go to and from the all-morning synagogue service for the Sabbath. Jeff could ride with me for free as my escort.
Believe it or not, Jeff the funny clown with the potty mouth started going to synagogue with me every week. He honestly wanted to convert to Judaism and was giving it his all.
A Death Sentence and My Soulmate
I spotted Jeff halfway across the kitchen, and for the first time in my life learned what it felt like to have a crush on someone. We became best friends during my first six months at Side by Side. The more I got to. know him, the more I knew that he was the man for me. When we finally began dating he even decided to go so far as to convert to Judaism for me so that my family would accept him. I loved him unconditionally but at one point we thought he had a death sentence.
ICU Stay and Dancing With Sepsis
It took a few days for the fog in my head to clear.. When it finally did, I realized that I was in the ICU. Once I figure out where I was, I couldn’t remember what had happened to land me there. It took a couple more hours to piece things back together in my misty brain. I had gone from having some aching in my suprapubic area to full-blown sepsis. This had happened over the course of less than 24 hours. The day I went to the hospital, I made it halfway through the day. Then suddenly I felt like I was in Antarctica. The chills were so bad that they invaded even the marrow of my bones. In the middle of an online monopoly I terrified Jeff by passing out. He had no choice but to call 911.
Trauma Room Drama
Lying on a stretcher in the trauma room, I was surrounded by a mass of controlled chaos. I couldn’t believe how quickly my day had gone downhill. My body was wracked with chills, and I was unable to stop my teeth from chattering. Even though I had my Hello Kitty comforter with me.
“Can I have a heated blanket or at least another thick blanket?” I asked.
“Are you kidding?” One of the trauma room nurses asked me. “Your temperature is 105.5 and climbing, we may have to pack you with ice packs to get this fever down.
That thought horrified me. I felt like I was in Antarctica with just a bathing suit on. It felt like I had gone swimming in the frigid ocean waters in that bathing suit. Somehow the ice-cold Antarctica waters were getting inside my bones and organs.
Dying is Too Scary
UTIs have to be the worst kind of torture imaginable. They make you feel like you are dying when they go septic. At that point, you really are dying.
In October 2016, I woke up one morning and felt like my whole bladder was throbbing and aching. I also felt like I needed to empty my bladder. It was only 5 AM, Jeff was still sleeping at his apartment, and it was way too early for Melody or Lauren to be there. Luckily they always left a basin full of packaged clean catheters on my bedside table, and a basin to put the bags of pee that disconnected from the straight catheters as well as the used catheters there as well.
When I tried to self-cath, it burned so badly that I almost screamed and only about 25 ml came out. Ten minutes later I felt like I had to pee again. Again, only about 25 ml came out. At that point, the pain was already so bad that I felt like I was dying and I hadn’t even hit the worst of it yet.
A Septic UTI and a Concerned Jeff
Septic Urinary Tract Infections or Septic UTIs are not fun for everyone. Most people will get a couple of UTIs over their lifespan. I however am a catheter user, which means I get a UTI almost once every two months. Often times they go septic and spread to my bloodstream, becoming a life-threatening medical emergency. A septic UTI goes beyond what most normal people experience, they are excruciatingly painful, like being stabbed up the urethra by a knife, and they cause high fevers. If not treated rapidly enough they become lethal.
I never know when I am going to get one either. Back in October of 2016, Jeff and I were just going about our normal routine.
In Love With Jeff
“I am head over heels in love with you,” Jeff would call to tell me every morning around 6:30 AM, “Oh are you awake?”
“I’m awake now,” I would tell him, “and I am so in love with you my heart is swollen to the size of a beach ball.”
It was all part of our morning routine.
“Did you take your Lactulose or your morning meds yet?” I would ask him
“No, I forgot, I’ll take them right now,” he would tell me. On the other end of the phone, I would hear rustling noises. Jeff was grabbing the lactulose and then opening his mini-fridge where he kept the Coca-Cola. He used Coca-Cola as a chaser for his nasty tasting Lactulose that he hated so much. I could hear gulping noises, then a disgusted noise followed by a desperate chugging of Coca-Cola.
After that, I heard the rattling of pills and more swallowing noises.
Autonomic SFN – Small Fiber Neuropathy and Me
Autonomic Small Fiber Neuropathy is also known for short as Autonomic SFN. It’s a shut down of the unconscious nervous system combined with body-wide neuropathy. Eventually, your whole organ system shuts down. I’ve been struggling with autonomic SFN since I was eight years old. At age 26 my tests started coming back showing that I had the most severe form of it possible. This meant I was in the end stages of it.
In the last few days, my body had taken a beating
First, there had been all the trauma of feeling so sick and almost dying. Then there was the further drama of being suddenly kicked out of Berkshire Medical Center. After that, there had been the hour-long drive to Baystate Medical Center. During the drive, I had to force myself to keep talking to Melody. I was being pulled toward the sleepy abyss of Autonomic SFN. My fear was that if I let go and spun into it, I would never return.
About Me
Freelance Author and Professional Patient
Despite my terminal illness and childhood onset schizoaffective disorder, I have earned a BA in writing from Elms College and published two full length young adult novels designed to validate, inspire and instill hope in the world of chronic physical and mental illness and the entire community that supports us
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