So much in my life had changed in the last four and half months that I had spent at Massachusetts General Hospital. The most major change was that I finally had a name for the dark cloud hovering over my life. After putting me through the washing machine on the highest spin cycle with relentless testing, we had a diagnosis. This diagnosis tied all my millions of symptoms and other diagnoses together. I had a disease called Autoimmune-Mediated Small Fiber Autonomic Polyneuropathy and it was causing my entire body to go haywire. Including my mind which was why I was currently on the medical psych unit at Mass General Hospital
What is Hyperalgesia and Drug Induced Psychosis
Although I had been deemed medically stable, I was feeling on shaky ground emotionally. After having my GJ tube and port placed I was put on a ton of liquid morphine via my J tube. I needed so much because I have something called hyperalgesia which means that I experience pain most people experience as a 2 or 3 on the pain scale as an 8 or 9. Plus the placement of a GJ tube is painful no matter what. My hyperalgesia was caused by by my Autonomic SFN (small fiber autonomic polyneuropathy).
The morphine became an issue because I have a high sensitivity to meds and get weird reactions. I ended up with a drug-induced psychosis from too much morphine. My memories of the drug-induced psychosis are all chopped up and stir-fried. At that point, my brain was just too messed up to process anything.
Having an Emotional Overload
I do know it really shook me up and triggered a whole lot of anxiety. As discussions of discharge came up I started feeling really scared of going home. I didn’t know how my dad would react to all the tubes and bags and pumps. World War III might break out in the house when the nurses came over to try to teach us everything.
Then I started feeling really sad that my life had come to this. I started wishing the disease would just kill me now. That way I wouldn’t have to go home and walk on eggshells around my dad. Or hide my illness from my brothers. My mom told me to do this. She said my disease and tubes grossed them out. I felt like a failure in life.
At a loss, I asked to speak to the social worker privately.
“Suicidal thoughts are starting to pop up in my mind. However I don’t want to ruin my life. Not over some impulsivity I have when I’m upset,” I explained to her.
Heading to Blake 11: The Inpatient Medical Psych Unit
We had a long talk and decided that I would go to the medical psych unit for a little bit. That way I could work on my emotional stability before going home.
Once we were all in agreement, I was put on a waiting list to get sent to the medical psych unit. It took two weeks before I transferred to the medical psych unit. The whole time I was a bag of nerves. This was probably due to my past trauma related to psychiatric treatment. Thank God, everyone on the floor was gentle to me and respectful and addressed my concerns.
Two Weeks On the Medical Psych Unit
I spent two weeks in the medical psych unit. They put me on anti-depressants and an anti-psychotic/mood stabilizer. In addition they increased my sleep aide and my anxiety med. There were groups every day. I went to as many as I could without completely exhausting myself. The nurses, psychologists, psychiatrists, social workers and complex care team met with me daily. Psychologists and the psych nurses discussed coping strategies with me. We tried to come up with ways to make my life easier
For multiple reasons I was a little different than the typical psych unit patient. I had to get pushed around the unit in a wheelchair. It had to be a wheelchair with an IV pole sticking out of it. On the IV pole was an IV bag and pump, and a feeding tube bag of formula with a pump.
A Different Type of Medical Psych Unit Patient
Everyone stared at me because of that and the fact that at 4’10 and 70 pounds with a baby face, I looked all of eleven years old at the most. The medical psych unit at Mass General was an adult unit. It didn’t help that I always carried one of my build-a-bears around with me. They made me feel safe and less alone in the world.
Because of my health issues, the medical psych unit staff was really lenient with me. They didn’t make me wake up at 8 AM to shower, get meds, and have breakfast. I was on a slightly different schedule. At any point in the night, one of my IV pumps might start beeping because of air in the line, upstream occlusion, downstream occlusion, low battery, infusion complete, or something else. The nurses would always try to rush in before it woke me or anyone else up, but still weren’t always successful.
At 5 AM, the nurse would sneak into my private room that was on the ICU side of the medical psych unit (not because I was that bad mentally but because I was medically so intensive). She would switch off my feeding pump. Then as carefully as she could, she would disconnect the J port and insert a feeding tube syringe full of sterile water into it.
Not Getting Woken Up The Same Way as the Other Medical Psych Unit Patients
Very slowly she would inject the water into my J port to keep the tube patent. It would be disconnected for an hour, so that my digestive tract was clear before the nurse would come back in and inject my Synthroid for my underactive thyroid. This part would usually wake me up, but sometimes I would sleep through it. Sometimes I would fall back asleep.
At 6 AM, the nurse would return with the crushed Synthroid dissolved in water. She would hold that in one hand in a feeding tube syringe. In the other hand she would hold a cup of sterile water. First, she would inject another 10 ml of sterile water. Then she would inject the dissolved Synthroid, then more sterile water. Once the Synthroid was flushed through, she would leave. At 7 AM she would come back in for the third time and hook my tube feed back up.
After 7 AM when my tube feeds had been hooked back up, I would go back to sleep. The medical psych unit staff let me sleep until as late as 9:30. That was the latest they could give me my morning meds.
Needing Supervised Showers in the Shower Chair
Almost all the other patients on the medical psych unit were woken up at 8 AM. However that was because their showers were done between 8 and 9. I couldn’t shower unsupervised.
To shower, I needed to disconnect from all my IV fluids, tape up my accessed port, and use a shower chair. Also, I needed to have someone bath me. With my POTS the warm water lowered my blood pressure and spiked my heart rate too much. The reaction weakened my body. It also made it impossible for me to balance holding myself in the chair, and bathing myself. If I tried to bathe myself alone I usually ended up passing out.
Not Being Able to Eat Breakfast With the Other Patients
The other patients ate breakfast from 8 AM to 9 AM and I couldn’t eat. Even though the other patients took their meds at 9. I had a different meds system because I took them through my J port of my GJ tube.
At 9:30 my assigned nurse would come into my room. He or she would pause the pump and put my meds through my J tube. We quickly learned we could only use a tiny bit of water with my J tube meds. Otherwise they would reflux up my J tube into my stomach and I would puke them up. If I didn’t puke them up, I would just puke up bile. We had to push them really slowly too.
After meds and shower were done I would change into a clean pair of the brown pajamas that were the smallest size pajamas the floor carried for inpatient medical psych unit patients to wear. Needless to say, they were gigantic on me. At least I was in a wheelchair so I couldn’t trip on them. The nurse would roll me out into the day area.
Meeting Other Patients in the Day Area
When I was out in the day area I had a nurse assistant assigned to be my 1:1 so that I wasn’t just sitting there helpless in that wheelchair. He or she would sit with me and talk to me or stand back and let me talk to the other patients, it was cool, they let me take the wheel.
The other patients were mostly cool. A couple of them asked me about my pumps and bags and tubes and I explained the best I could about Autoimmune Autonomic SFN and they seemed genuinely interested. There was a girl there who had an accessed port, and she showed it to me but she wouldn’t really talk about why she had it and I didn’t want to pressure her so I just left it.
There was another really small skinny girl there who had a J tube and said she had it for anorexia nervosa and that she was at the hospital for anorexia and she thought that was what was wrong with me, at first.
Introducing Myself to Elsie
I was almost offended by this comment, with my history and everything. Instead of getting upset, I just took a deep breath and reminded myself that she just didn’t know. Then I explained to her.
“No, I actually don’t have any type of eating disorder, I have an autoimmune condition that is also neurological. It’s called Autoimmune Small Fiber Autonomic Polyneuropathy.
“Oh, wow, I’ve never really heard of that before,” the girl, whose name was Elsie, told me.
“My form, severity, and presentation are really rare.” I explained “They think I’ve had it since childhood possibly since as young as eight or nine. At least since I was ten. I got my first feeding tube at ten.”
“That is really young,” Elsie said.
“Yeah, I was placed in a children’s psych unit, given an NG tube that caused a bowel obstruction, and forced to attend eating disorder treatment groups meant for teenagers when I wasn’t even eleven yet.”
“That’s crazy, especially because you didn’t even have an eating disorder.” Elsie shook her head.
“It gets worse,” I told her, “Then they put me on an anxiety medication meant for adults, that I had a terrible reaction to because I was too young for it and their reaction was to put me in a quiet room and restrain and behaviorally restrict me down to nothing.”
Hearing Elsie’s Story
“For the last seventeen years, I’ve been in and out of ED treatment facilities and psych facilities,” Elsie told me. “I’ve been nose tubed too many times to count. It literally feels like I’m being raped through the nose when they force it into me.”
I laughed a little.
“You could see it that way I suppose,” I agreed. “They always sedate me for my NJ tube insertions.
“They were giving me NG tubes until my anorexia got so bad that it caused gastroparesis.”
“I didn’t even realize anorexia could do that, that’s wild,” I told her.
“Well, now I’m court-ordered to have this J tube and am waiting here to be placed in a state psychiatric hospital. Then they can force-feed me against my will for as long as they see fit.” She sighed sadly. I saw tears appearing in the corners of her eyes but just offered support, no judgment. All I wanted was to be there for her. Her story was heartbreaking.
“One time I tripped when I had the NG tube in and I caught my foot on it.” She continued. “Out it came. They insisted I pulled it out on purpose and again held me down and up-the-nose raped me to get it back in.”
Commiserating With Elsie in the Medical Psych Unit
“I hate it when medical professionals don’t believe us.” I agreed. “I had my own traumatic experiences on the psych unit I was on, but it wasn’t a medical psych unit like this one.”
“I hate all psych units and now they are keeping me alive in a life that has been so screwed up by my eating disorder. It’s to the point where I don’t know if I want to keep living it. ED treatment is so brutal it just makes things worse.” She said as some of the tears trailed a path of despair down her face.
My heart ached for her as we continued to talk to each other about what we’d gone through
We probably could have gone on for days swapping stories about how bad ED treatment was but we had to go to group. My heart felt like it was being torn into shreds when I heard her story. And I thought my situation was bad! Just goes to show you, you think you have the worst situation possible. Then you turn around and meet someone who has it even worse than you.
Being the Very Important Patient (VIP) in the Medical Psych Unit
I felt bad about all of the exceptions to the unit rules that were being made for me. This was especially true because I felt like the severity of the mental illnesses that the other patients had, made them worse off than me. Luckily, none of the other patients complained about my special treatment or asked why I got to take an hour-long shower in the roll-in shower chair. While everyone else was in Cognitive Behavioral Therapy with the therapist with no sense of humor.
No one complained about me watching Netflix on my laptop in bed while they bogged through the unit chores either.
Even though I had a hand signal for my aide during therapy groups or any other time, that would get me out of any situation in seconds. So that I could get to the nurse before anyone even asked what was wrong, no one commented on it. It was obviously only in place for emergencies.
In the two weeks, I spent in the inpatient medical psych unit I had to use it several times. I used it for palpitations from the rapid heart rate that the EKG, which Dr. Thomas immediately ordered, showed to be A-Fib. He then drew stat labs and sure enough, my potassium was in the toilet. The A-fib was resolved with an extra four bags of IV potassium.
Another time I used the signal when I got super shaky. The nurse checked my blood sugar and it was 44. Jan, my nurse for the day, called Complex Care and got an order for a giant syringe of D50 (straight up highly concentrated IV sugar).
Other Instances When I Had to Wave the White Flag
When I was in the middle of a group and had a sudden onset of bladder pain and urgency, I used the signal. After giving a urine sample, Patricia from Complex Care diagnosed me with a UTI and put me on intravenous antibiotics for five days.
The only other reason I used the hand signal was for difficulty breathing. Complex Care thought it as an asthma attack and treated me with an updraft. When that wasn’t the answer they hooked me up to oxygen, they had to up me to 4 L to get my O2 back above 92%. They ordered a repeat chest x-ray and it showed worsening of my atelectasis (collapsed air sacs in my lungs that were supposed to be the places where your body absorbs oxygen).
After spot checks of my oxygen multiple times a day showed oxygen levels consistently in the low 80s, both Patricia and Dr. Thomas came into the room with chairs and sat down next to me. They had come in to check in on me earlier than ever before and had a canister of oxygen with them.
“You are going to need to be hooked up to 2 Liters of Oxygen 24/7 from now on, they explained to me, “Even after you go home. We will hook you up with an oxygen provider. Your atelectasis in your left lung keeps worsening, you have a heigthened diaphragm on the left side, a weakened diaphragm on both sides, and low lung volumes on both sides,” Patricia explained to me.
I sighed and wearily agreed to wear the oxygen at all times.
I think the other patients realized that I would have gladly given away all of my little privileges if I could be as physically healthy as they were
The Groups on the Inpatient Medical Psych Unit
All the groups were a little different. I didn’t go to all of them because I couldn’t sit up comfortably in a wheelchair long enough. Sometimes if I was upright too long my blood would pool in my feet and they would turn purple, or if I sat up too long I would pass out. On occasion, I would have grand mal seizures as well, like we’re talking horror-movie-Exorcist stuff! It was crazy.
I couldn’t go to more than two groups in a row and usually could not go to more than three groups in a day, but I gave it my all.
My favorite group was definitely art therapy. It was led by a psychologist that was a certified art therapist. She gave us different projects each time we had art therapy. The first time she told us to paint in watercolors what “happy” looks like. I painted a family that had a small daughter, and two bigger sons. They were at the beach and the daughter was sitting in the father’s lap holding a sandwich and laughing.
The mother was standing nearby, smiling, looking out at the two bigger boys playing in the sand with one hand on the daughter’s shoulder and one in the father’s hand.
“Can you tell me about this picture?” She asked me. “Are these your older brothers? Tell me about them. Who are the parents? Are you the girl? Is this based on something that truly happened at one time, or is it something that you just dream of happening?”
Opening Up to the Other Patients in Art Therapy
At first, I was embarrassed to talk and open up in front of the whole group, but they had shared their stories and opened up to me, so it was only fair that I do the same for them. Besides, how was I going to get over all my psychological trauma, anxieties, and depression if I didn’t open up about my feelings?
“This is a picture of my family, how they are now, at the beach. My dad is 46; my mom is 44. I’m 23. My brother is 20. My other brother is 16. They are both much taller and bigger, and both look much older than me, most people think I’m about ten or eleven, and most people think they’re about the ages they really are.” I began.
“Yeah, I thought you were like nine or ten when they wheeled you onto to the unit, I couldn’t figure out what you were doing here!” A girl named Sammi giggled. Other kids nodded in agreement.
“Where are you in this picture?” the art therapist asked, “and why is it in important?”
” In this picture, we’re at the beach. I don’t know if I’ll ever get to go to the beach again because now I’m in a wheelchair and couldn’t go swimming in the ocean or walking on the beach. Plus I have a port in my chest that is accessed 24/7 for IV fluids and medications and blood draws.”
Getting Feedback From the Other Patients on the Medical Psych Unit
“Maybe you could have your nurse deaccess you one morning and you could go to the beach for like an hour, come home, and reaccess you at night?” suggested the other girl with the port. If I were deaccessed I could do any swimming I wanted to.
“That is a good idea, but I live an hour and forty five minutes from the closest beach, I don’t think that they would allow me to be de-accessed in the hot sun for that long,” I explained.
Some More Feedback About My “Happy Picture”
“Good thought and problem solving skills though, Gemma, thanks for speaking up, maybe you too could brainstorm later since you have a couple things in common,” suggested the art therapist. She turned back to me, “What are you doing in this picture that is making you so happy?”
“I’m eating a sandwich. My specialized team of doctors told me this year that I’ll probably never be able to eat again. Also in this picture, my dad is holding me in his lap, and we’re getting along great.”
“Are you having a hard time getting along now?” the art therapist asked me.
I nodded.
“The last time my dad and I spoke, he told me I’m faking all my diseases and that I’m not allowed in his home until the Port and GJ tube are removed, and I can walk without a wheelchair or walker. According to all the doctors and specialists here, that’s all stuff that will probably never happen again without a miracle cure. I don’t know what I’m going to do, but my mom is working on him.”
Feedback From Elsie
“That sounds like some really tough stuff going on,” the art therapist said, “Anyone in the group have any feedback?”
Elsie raised her hand.
“Yes, Elsie?”
“My dad told me I couldn’t come home until I was eating either. Dad’s talk a tough game, but when it comes down to it, daddy-daughter love proves tougher than any tough-love games. Don’t worry, he’ll let you back in, and if he doesn’t, he’s such an asshole that you wouldn’t want to be living with him anyway.”
“Thanks Elsie,” I cracked a smile through the pummeling waves of anxiety. What she didn’t understand was that as his physically and mentally disabled (even though I had an IQ of 153 which was in the genius zone, I was developmentally delayed, and operated on the level of an eleven year-old-child) daughter, I was stuck in a little girl state and didn’t know anything except my childhood home even though I was a 23-year-old adult. I also was on the autism spectrum.
The End of Art Therapy Group on the Medical Psych Unit
I knew I wasn’t capable of living on my own. In my mind my only option was going back to my childhood home due to my complete dependence on my parents. Plus, I just loved them both unconditionally and intensely.
“You’re a tough girl Becca, you’ve been through a lot,” said one of the middle-aged woman there on the medical psych unit to detox from alcohol and to get ECT for depression. “I don’t think I would have made it through half the medical problems you’ve pressed on through. And the fact that you haven’t been able to eat normally for the last fifteen years, that’s insane. I would never have been able to live through that.”
After that group, I took a break, took a nap, and then woke up later for another one of my favorite groups, which was pet therapy.
Pet Therapy
That day’s pet was a little black dog about ten pounds at the most with curly black fur and lots of puppy energy. He loved jumping around and having his belly rubbed and getting treats. I got to give him a bunch of snacks and his handler showed me how to get him to roll over, sit, stay, speak, and shake my paw. He was so incredibly cute.
My Nightly FaceTimes With My Mom From the Medical Psych Unit
At night while my nighttime meds were kicking in, I would FaceTime my mom so that we could talk and see each other. She could tell I was doing better mentally, and even told me so. I explained to her about the psych med changes the psychiatrist had done and my individual meetings with the psychiatrist, psychologist, social workers, the group therapies, the art therapy groups, the pet therapy groups, and more. She told me she was still working on straightening things out with my dad but that things were looking better for me to come home from the medical psych unit with all of my life-preserving treatments in place.
My Final Meeting with My Psychiatrist on the Medical Psych Unit
The next day the first event of the day was an individual meeting with my psychiatrist.
“How do you feel things are going?” he asked me.
“Better,” I told him. “I’m not contemplating suicide anymore. I still get moments of severe anxiety or severe depression, but it doesn’t make me jump to suicidal thoughts anymore.”
“That’s great news; it’s huge progress,” he told me. “But I still want to know about this severe anxiety and severe depression.
“I’m ok until I think about how my father thinks I’m faking these medical conditions then I feel severely depressed and anxious and hopeless.”
“We started you on the Paxil and the Loxapine since you’ve been here with us, and we’ve increased your doses of Trazadone and the Vistaril. Is any of that helping? He asked me.
“It’s hard to tell,” I explained. “I’m sleeping better with the more Trazadone, though.”
“Well, that’s progress right there,” he agreed. “How’s the Loxapine helping? Any more hallucinations, confusion, paranoid thoughts, or agitation?”
“Everything’s better. I haven’t had any more hallucinations since we stopped the morphine. The confusion is barely there. I think I’m still having occasional paranoid thoughts and a lot of agitation.” I answered as honestly as I could.
“Well, what can I do to help more?” he asked.
“Just keep helping me convince my dad that my Autoimmune SFN is real,” I told him.
“I’ll try,” he promised me.
My Social Worker Threatening Discharge With No Solid Plans Set Up
Next, I met with the social worker who was explaining to me that since I was no longer actively suicidal or a risk to myself or others, they could not keep me in the psychiatric hospital much longer. I explained to him again about the situation with my dad and how my dad didn’t want me to go home with tubes in and how I couldn’t survive longer than a day without the tubes in. He told me he was acutely aware of the situation and working on it but that he didn’t know what to do about it.
My nerves were so taut; I thought I would just ping and snap by the time Dr. Thomas and Patricia from the Complex Care Team made their rounds.
“I don’t know what to do!” I bawled to them. “I’m going to be homeless!”
Complex Care to the Rescue Again
“We will not let that happen,” they assured me. “Multiple different doctors from esteemed hospitals around the country are going to be briefed on your case. They will then be calling your dad and educating your dad on your particular diagnosis and the diagnosis in general, so he understands a little better. You will be going home soon.”
At that point, I felt like my water had broken, and relief and thankfulness to the complex care team had gushed out through me. I couldn’t even bring myself to speak thank you out loud until after they had finished their examination and were heading for the door.
On November 27th, I got discharged from the medical psych unit and my marathon admission to Mass General. In those five months I had gone through so much, that I felt like a different person. I refused to give up. We finally understood why I had been sick for so many years and knew exactly what was wrong with me.