The Phantom Doctor
On the Outside written by my husbands accounts follow my perspective. We encourage any of the faculty from Mountain Crest to respond with their own piece if they so desire.
I didn’t coin the phrase, this is what the other patients called the doctors in the hospital, I did quickly figure out why.
The first morning I awoke to doctors. I felt disoriented but that is to be expected in such a situation. I explained that the night before had not gone well, and promises were not kept. I explained my Colitis flare, how I normally managed pain with cannabis. Again, being told and almost scolded that I wouldn’t be aloud that even though I never even asked or entertained the idea they would allow cannabis. Just more cannabis shaming. The PA said that she would have to check the “data base” to see if narcotic pain medication was appropriate. I agreed. My pain was creeping up, but there was still time to get it under control successfully. I urged her to call my primary care physician so he could better explain my medical issues because she literally had no idea what was going on with me. No idea she needed to get in touch with me about pain management, she did not have a clue.
I met Dr. Sehr early that morning too. Early, I think. There were no clocks in the rooms just in the hallway and main rooms. We discussed at length that I had been through several medications, did over a year of ECT, have done EMDR, talk therapy, and currently doing Neurofeedback. He prescribed a medication called Remeron. I have been reluctantly taking it ever since. I want to feel better, but I do not have a ton of hope when it comes to medications. I explained to him that the PA said she was going to call my doctor, check some “data base,” and get my pain under control.
As minutes turned to hours with no pain medication, I started to get extremely nervous. I was getting nauseated and knew that throwing up was the next step in my body’s breakdown. Luckily, I only vomited once. I would not leave my room and my pain was at a 10. Mainly because I was in complete panic. I had no control over my pain, I could not get any relief and I was scared. The nurses on the floor that stopped by my room brought me my medications and every time I told begged them for help with the pain. ANYTHING! I had them bring me my promethazine for nausea because I have a prescription for it prior to the hospital.
I tried every position, sitting in butterfly in the corner of the room on the floor was the best relief I was finding so I wrapped myself in blankets and painfully lowered myself into that corner, into that position. I than sat there and cried. I called my husband at some point, maybe more than once, the day comes in flashbacks for me and he will tell his account later in the piece. I know we were both fighting to get me help but to no avail. I remember him telling me he had talked to a people about me that had never even seen me in person.
I was done, I had been backed so far into the corner, I was terrified. Literally losing my mind. Like a movie playing in my head as I sat there in that room in excruciating pain; pain that was radiating from my pelvis down my thighs and up into my ribs, the words “its okay sweet girl…” played over and repeatedly. There was no voice, but I felt the warm presence of my grandfather in my room. He was a safe place in my life during his entire presence in it, so I think my mind was just searching for safety in a terrifying and traumatizing situation. I remember looking around the room trying to find weapons to end it with. I felt like I had no way out and I was completely petrified; I knew that I could have to endure this for 72 straight hours. I had no idea how I was going to be able to cope with this. I signed up for this?
At some point an older woman walked into my room, I believe her name was Jen. I lost it, screamed, “YES I AM IN FUCKING PAIN AND YES I WANT TO FUCKING TO DIE!” I was crying and could not control the fear coming out. I was shaking, I was angry and yelled at the woman that I needed help, that I needed to go home! I do not remember what she said or if she said anything to me.
Less than 30 minutes later a nurse brought in a Percocet. What? I had been crying and screaming in pain all day. Then I yell at this woman and they have a pill on standby for me? I was beyond confused but so grateful to have some relief. I took the pill and wrapped myself up in blankets and fell asleep as the pain started to dull. It was by no means under control but getting it down to a level six was so much easier on me.
I awoke to two women entering my room. I was groggy and didn’t quite understand who they were, but they seemed to be from HR. They asked about my pain and I remember telling them that it was so much better; because it was. I was literally dissociating at one point before getting that bit of relief, so I was grateful they helped me at all! I do not remember a lot of that conversation aside from that.
Throughout the day it started to get clear to me that we got to far behind on my pain. I needed additional medication and was of course terrified to ask after the last ordeal. But the pain got to a point I was not okay. I finally had the wits about me at this point to ask why I got the pain medication after talking to that woman after telling EVERYONE all day how badly I needed it and being completely ignored. They answer. “It was ordered all day, you never came to the window.”
Talk about heartbreak. What window? How was this even possible? They brought me everything else and I never went to a window. They withheld pain medication that was ordered to me, let me cry, panic, and contemplate anyway possible to end my life and the suffering I was feeling because I didn’t come to a window, I didn’t know existed? I felt total defeat. Was I seriously so insignificant in the world that I would be treated with such a demoralizing attitude? Why, how?
“…this is what hopelessness feels like…” I remember sinking into. I thought I had felt hopeless before, but this was despair. I started to believe that maybe it was part of their program. Break you down completely and then build you back up again. Like I had entered a scary cult I could not escape from. There was no outside time that I was ever aware of. I do not normally think like that in the outside world. I am no conspiracy theorist. This was real scary stuff. I thought I was going insane.
I played the part, I went to the dining room and drank some juice off my plate and gave away the rest. The same thing I did with every single meal I had the entire time I was there because I was in extreme pain! If you have Colitis or any kind of inflammatory bowel disease you will also understand that pain isn’t the only extremely difficult part of these flares.
By that night my pain was back to out of control completely. I was crying an unable to self-soothe. The therapist finally came in, the first one I remember even talking kindly to me. He helped me as the Xanax and other medications took affect and I finally fell asleep for a while. The pain was to intense for heavy sleeping and I knew I couldn’t miss a dose of medication or it could get even worse, so I had to make sure I was awake to go to the window when the medication was due. That meant randomly walking out in the hallway to see a clock. I knew we were going to have to do something else to get on top of this, but I had no idea what the hell to do about it. I had zero control over any aspect of my healthcare.
I knew that if I did not start acting the part, they could hold me longer, I was basically told so on day two. A new “care coordinator” came in. They said that I hadn’t been participating in my care, I tried to explain the pain and how things were all messed up. I explained no one was listening. I told her she needed to speak to my husband and as she was leaving the room my husband and two of my sons entered the room. I didn’t want the conversation to happen with the kids there so in passing they made a deal that she would be calling him, and I was told that the new PA would be in to see me in about an hour. Because again remember, we are not on top of pain. We let it get to far before it got treated. She shut the door behind her. My husband and children were then treated horribly at the end of visiting hours. She was rude and mean to my 10-year-old son who was crying because he wanted his mom and then yelled at us for having the door shut. My husband, already extremely unhappy with this place, shot back that he had nothing to do with closing that damn door, that a member of the faculty had done so. You could see clearly the man had been pushed way to damn far. He promised me they would take care of me and all he could see was the pain. They were not holding up their end of the bargain they made with him and he felt just as defeated and hopeless as I did. She never called him, he called her to no avail. I never saw her again.
This care coordinator had told me that the PA would be into see me in about an hour at the end of our conversation. I was desperate for help, so I was patiently awaiting his arrival in tears. I didn’t leave my room a lot because I didn’t want to miss him. He never showed, the pain continued to be terrible, my despair grew, and I was in one of the darker places I have ever been. Three hours past the time this PA was going to see me I had, had enough and stumbled my way up to the nurse to demand to see the PA. They said they would check to see if he was still there! What!?
Luckily, he was, and he ordered an additional dose of Percocet between doses to hopefully break the pain cycle. Which would have worked had the nurse after he left decided she didn’t feel comfortable giving them to me so close together (even though they were ORDERED to work like that.) I was not able to get my pain under control until AFTER I was discharged…72 HOURS!
I attended a few of the little workshops. Nothing was very consistent but the group therapist they had come in was great. But the part that messed with me, the part that made me literally see the world in a completely different light were the people I met there. The other patients and the obstacles they too were having to climb to just get their basic needs met. I didn’t even get the supplemental oxygen of 2.5 liters I use a night because of my interstitial lung disease. I needed narcotics and oxygen. That’s it. I met a woman who had a severe collagen disorder that requires her to have special braces and such to be able to hold up her body parts. It took her days just to get the support devices figured out, so her ligaments didn’t tear! Negligent doesn’t even begin to explain the pain I saw. For what end? The stories they told about the circumstances that brought them in even where sometimes outlandish. I do not know the truth of their stories, as I did not experience them. But I find them a hell of a lot easier to believe after what I experienced. I hope someday these amazing people I met get to tell their stories.
Mental illness is treated criminally. I didn’t feel like I was being swept up in love to keep me safe from harm while my brain healed, while I got myself put back together. I didn’t feel safe at any point. I didn’t expect a spa week, trust me. I did however expect that when I need help that I am paying extreme amounts of money for, that I get treated like I am paying you to help me. Not like you are somehow doing me a giant favor. You work for me when you are my doctor, hospital, or otherwise. That is how business works.
Next from my point of view will be discharge day and the light that did come at the end of the tunnel. There is one other horrible medical experience that piggy backs off this crazy train and I will be talking about that because it demonstrates how traumatizing what happened to me was. I have been through a lot physically when it comes to medical issues. This was by far one of the most challenging, raw, and terrifying emotional process of my life to date.
On the Outside
The first thing I did when I found out Manda wasn’t being treated; I called Kriston back. Kriston was the one who video chatted with Manda and assured her, her pain would be controlled and was rude when I called to confirm. Now, Kriston didn’t exist and I found out she was just part of some type of call center for multiple hospitals.
Then I went to the Google reviews that I had looked at while trying to get Manda help. I found that on all the negative reviews, which is all of them, they listed a number to call and address any issues. I called that number. They took my complaint, another major call center, and said they would direct it to the correct hospital.
A couple hours later Betty (Manda’s patient advocate) and care coordinator #1 of 3 called me. They wanted to hear my concerns so that they could be addressed. I told them about her pain and how it wasn’t being treated or managed at all like it was promised to be. I explained that she uses cannabis at home for the pain, they told me it was not allowed. I wasn’t asking, just informing them that she needed alternative intervention. That Kriston was apparently no longer involved in Manda’s treatment plan but had made a lot of promises that were not fulfilled. They apologized, then mid through the conversation I finally asked, “Have any of you actually seen Manda? Or even know what she looks like!?” They answered, “No.” But they assured me directly after our phone call that they would head down to her room. These are the woman that Manda vaguely remembers coming into her room. The reason I even asked if they knew who Manda was, was because it seemed everyone, I talked to did not actually work there.
Day two, Dr. Sehr called me. First, I had heard from him. He said he had been tied up the day before and was therefore unable to get in touch. At this point I was fucking livid. I explained to him that he obviously just did not give a damn about his patients, and he was not thrilled with our conversation. He still never explained a treatment plan. I was never informed of a treatment plan or anything regarding Manda’s care. Manda had agreed for me to have access to everything going on. I came for visiting hours and I had two of my sons with me to visit their mom because they had earlier appointments in Fort Collins. Coordinator #2 was in the room with Manda. She left us as a family but told me she would call me. Dr. Sehr had also told me that this coordinator would call me, again no. As she left the room, she shut the door and we hung out for our allotted 45 minutes or so. The nurse then rudely scolded us for shutting the door and yelled at our ten-year-old crying son. I informed her that her boss had shut the fucking door.
I then demanded to talk to Betty. I had at one point waited in the lobby for 15 minutes to see her and she never showed. She told me I could talk to her anytime and she was Manda’s patient advocate. Anytime I had concerns to bring them to her attention. I asked if they had gotten ahold of her doctor yet (this is Wednesday, and she was admitted Monday evening!) Betty did not know the answer to that question but said she would make sure it happened. Pardon us for not being convinced. Manda had no idea she even had a patient advocate.
Betty I was told by a care coordinator was not by position a patient advocate, but in administration and was just filling in for someone on maternity leave.
***This is the day they called her doctor…as we understand it. We are gathering medical records and notes tomorrow where I can be there to support her as she advocates for herself.