A meltdown in my room of Hell-Crest Commons, the nursing home I’d been living in for three months, had prompted that awful nurse practitioner, to send me to the hospital to get evaluated by psych crisis. Jillian was my primary care provider at the nursing home.
Who wouldn’t have had a meltdown after that meeting though? At the meeting they told me that I was faking all of my illness because I liked being sick and that she was going to stop my IV fluids. My IV fluids were keeping me alive. They were one of my main treatments, but that wasn’t even the worst part of the meeting.
At the meeting they had dropped the bomb on me that I was never allowed to go back to living at home.
After the meeting I went back to my room where I couldn’t stop crying. Tanya the social worker, and the nurse didn’t know what to do with me because I was crying so hysterically, After about twenty minutes here I just lay in bed, surrounded by my stuffed animals ,not doing anything but crying hysterically, Tanya told the nurse to get Jillian,.
She was probably hoping Jillian would prescribe me something for anxiety, instead Jillian sent me the ER and threatened me with possibly getting sent to the psych unit part of the nursing home.
At the ER they had to medically stabilize me first because Jillian had disconnected me from everything before she sent me, so I had to get boluses of fluid with electrolytes, injections of D10, and oxygen, then finally I got transferred to the psych crisis area.
The psych crisis area of the ER was very different than the rest of the ER. They wheeled me over there in a wheelchair and security had to let me in through a locked door and search me once I got in there. Once I was in the crisis area, there was a nurse and a patient care tech waiting for me, and they parked me in the hall at first to ask me a few questions about what was bothering me. I answered as best as I could. By then I was exhausted and it was getting to be late at night.
After I answered all of the questions from the nurse about why I was at psych crisis and had my vitals taken and went over all of my belongings with the patient care tech. Then they took awaythe few belonging I had and just left me sitting in the chair in the hall for what felt like forever but was really like two hours. My head was rolling forward, my neck and back ached, my whole bottom hurt so bad from being upright for so long, I felt like I was going to pass out. All I longed to do was lie down, but they just kept me sitting in that hall. Toward the end of that two hours, my head was starting to feel light-headed again and my fingers and toes were starting to get tingly. I knew my levels were starting to drop again.
That whole time I kept bugging the nurse and the tech to find out how much longer it would be until I could go into a room and they kept telling me that Crisis was still interviewing in all of the rooms and that I would just have to be patient and wait.
I don’t think that they realized how different my situation was than your typical psych crisis patient who is simply just being impatient about needing to wait in a hallway. Even when I tried to explain my situation, I think they were just used to your typical psych patient just being manipulative to just try to get things done their way.
It’s kind of scary how once you’re deemed a psych patient no one believes anything you say anymore.
Once a room did become available after two hours of sitting in the hall, the nurse wheeled me in there and I almost lost it. There was no bed in there, just a chair, a table, and now my wheelchair.
“I really can’t sit up in this chair any longer,” I tried to explain to the psych crisis nurse. “My body simply can’t handle it. Is there any way we can put a stretcher in here for me to lie down on?”
“We can’t put a stretcher in here. It’s against our safety policy in case a patient throws it or uses it as a weapon or anything.”
“Well, I’m not strong enough to throw a stretcher. I can’t even get out of this wheelchair by myself, so can you put one in here just for me and then take it out after I leave?” I asked.
“We can’t do that, we can’t break policy just for you, because then we’d have to do it for everybody,” he explained to me. “The crisis worker should be in soon, you’re just going to have to hold out and wait.”
After another hour of waiting the pain was so bad that I was going in and out of blackness and every time I slowly had the room fade out and slowly come back into focus I would remember all over again the awful situation, I was in. At one point the nurse noticed I was going in and out and came in to check my vitals.
My blood pressure was 78/34 and my heart rate was 140s.
“I have to take you back over to the medical side,” he told me. “You’re not looking so good.”
I wanted to look him in the eye, laugh, and say, “no kidding, Sherlock Holmes!”, but instead I just told him, “Okay.”
I was relieved to be back in a bed once I got back over to the medical side.
After drawing more labs, hooking me back up to monitors, doing an EKG, and a full assessment, they explained to me that I was dropping levels again and my body was reacting to that and the stress of being upright too long. They lay the bed all the way back with my legs raised slightly and hooked me back up to IV dextrose with Potassium and a few other electrolytes that included magnesium and sodium phosphate, to get my levels back where they needed to be and to get me more hydrated as well.
After a few hours on IV fluids, everything was stabilizing nicely and they had the woman from psych crisis come in to talk to me. By then it was 2 AM and I had been at the ER for hours.
“I had a meeting at the nursing home I’ve been staying at for the last three months and my parents just told me that unless I have some sort of miracle-from-God-cure and completely recover from my chronic degenerative neurological condition, then they are kicking me out of the house because I’m sick and they want time for themselves to go on dates and vacations without having to worry about me. For years I’ve been told that my health conditions are all in my head or that I’m faking them, even though I have diagnostic proof from hundreds of doctors that this is not the case. The provider at the nursing home is convinced that I like being sick and that I want to be sick and is going to kill me in her attempts to stop treatment. It’s all a big mess.” I explained to her.
“It definitely sounds like you have a lot going on. I’d be very upset too if I was going through all of that.” The crisis lady said. “What exactly happened specifically tonight that made you come here when you did, like as opposed to this afternoon or last night?”
“The meeting happened, and then I couldn’t stop crying and the social worker came in to talk to me and Jillian bulldozed her way in and decided I needed to come here to talk to crisis because I couldn’t stop crying. She also stopped all of my ongoing infusions and oxygen before sending me in, which thank God for the EMTs and this ER, they were able to catch all my test results and vitals and see that I wouldn’t survive without them.”
“So Jillian is the one who had you come here?” the crisis lady asked.
“Yes.”
“Because you couldn’t stop crying about a difficult meeting?”
“Yes.”
“Do you feel like you would be safe if we sent you back to your facility?” the crisis lady asked.
“I would be safe from myself, but if Jillian stops my IV fluids or my tube feeds I’m going to die. That was confirmed for me tonight by how my labs and physical symptoms played out being off of the IV fluids only a short time,” I explained.
“Well, I’m sure Jillian wouldn’t let you die, she can’t do that.”
“She almost did tonight,” I told her.
“Well I’ll give you the number for the Pittsfield Ombudsman, you can call that number in the morning and tell him all of your concerns about the way Jillian is treating you and he will investigate into things and set things right.”
After speaking with the crisis lady, who, although she was understanding and sympathetic, didn’t seem to understand quite how much damage Jillian was capable of inflicting on me, I just waited for my last infusion of potassium with dextrose and half normal saline to finish and then the ambulance took me back to the nursing home where I was put in bed, made sure I was hooked back up to my maintenance IV fluids and tube feed and then immediately fell asleep and slept for a good thirteen or fourteen hours.
The only reason I did wake up around 4 PM was that Jillian came in the room to wake me up and talk to me along with Tanya.
“How are you feeling now?” Jillian asked me.
“I’m exhausted,” I told her.
“I got your paperwork from the ER,” Jillian told me.
“Ok,” I said, feeling on edge, not knowing where she was going with this.
“You got them to give you more medical treatment instead of psychiatric care.” She said. “You’re never going to get better like that.”
“I didn’t do or say anything to them,” I explained to her, “Did you look at my labs?”
“I don’t know how you pull that,” she said. “I haven’t figured it out yet.”
“I don’t pull anything. I actually do have real medical diagnoses, they’re just rare and present more severely in me than they do in most other people. If you contacted my previous doctors or sent me to see them and got my records or something you would see what I’m talking about.”
“Well, you’re not fooling me the way you fool everyone else. I see right through you and I’m going to help you get through this little phase in your life. Starting today we’re only giving you 1.75 liters of fluid a day. We’ll do that for a week and then we’ll cut you down to 1.5 liters of fluid a day the following week and we’ll keep cutting you down by 0.25 L a week until we get you off of the IV fluids. In the meantime we will be adding in four 75 ml water bolus flushes a day through your J tube, one at every med pass.”
“What happens if I refuse?” I asked.
“You can’t,” she told me.
“What do you mean I can’t? I’m an adult, I can refuse treatment if I want.”
“I have deemed you incompetent as your primary medical provider and taken it to the courts. Your mom is your health care proxy and your health care proxy has been invoked. Your mom is now in charge of making all health care decisions not you, and she has agreed to my plan.” Jillian informed me.
“Do you have any questions or concerns?” Tanya asked me. I was almost just as mad at Tanya, why couldn’t she see how insane Jillian was being and just stick up for me and stop her? I was quite obviously not crazy, and no one was listening to me. Everyone was believing Jillian over me. I wanted to grab Tanya and shake her until she listened to me and called my doctors from home to verify that I was actually telling the truth about all of my conditions. I didn’t care that Jillian had told her it wasn’t necessary, Tanya should have been making her own decisions.
“I’m not incompetent at all,” I said.
“You’ve made some really poor choices in your life that have landed you bedridden with multiple tubes in a nursing home at the age of 24. Most of your childhood was spent in hospitals. I’d say that’s pretty incompetent,” Jillian said.
“This illness is not my fault, I have an autoimmune condition that caused it.”
“You have a mild form of neuropathy, not a chronic degenerative neurological condition,” Jillian insisted.
“I don’t just have small fiber neuropathy, I have autoimmune-mediated small fiber autonomic polyneuropathy its much more severe, extensive, and different and you’re not understanding that because you’re refusing to contact Mass General or my outpatient providers.
I felt like I had just had the wind knocked out of me. This was like a nightmare that I couldn’t wake up from.
As soon as Jillian left I dialed the number the crisis lady had given me for the ombudsman and left a message describing my situation. Then I called up my old primary care doctor (Dr. Beckett), Dr. Green (my kidney doctor), and Dr. Hurrowitz (the nerve injury neurologist at Mass General), and Dr. Hussein my GI doctor hoping one of them would somehow be able to help me. This situation was getting more and more sickening as time went on.