Family Fibromyalgia Haters My Illness

The Hospital is an Awful Experience.Full Stop

Between Acute Pain, Acute Ignorance and the Opiate Death Crisis

Random thoughts after surgery: It was so surreal that I lost my time and space in the universe. I had spine surgery this morning, I CAN’T FIND MY PHONE. I DON’T CARE.

I haven’t cared since I started taking Lyrica. I hold my breath too much.

I eat too much.

I can barely see the screen.

I thought it was 4a.m. and it is 10:00p.m.

Interruption: Conversation with daughter, God, I love her.

JB Collection

With the current furor over opiate medication, I was frustrated about getting my needs met in the first place. It was almost impossible.

You know how sometimes when you are looking at a person’s face, their thinking comes at you like a freight train. The nurse explained to me that I had to stop pushing the pain button (strong opiate medication) and start requesting oral medicine (lesser opiate medication). Right after she explained the process, the green light came on and I pushed the pain button. She hated me in that second and if she could have, she would have snorted fire and smoke through her nose. I was less than 24 hours post spine surgery and I am desperate for comfort. I literally did not care what she wanted.

What’s in my head is more important than you…

In that moment I realized she was not there for me. She was unimpressed by her patients or their care. She wanted brownie points for her work and those points were not coming from her patients. She wanted patients who are compliant and who did what she needed for them to do. Maybe it meant that she could brag about her amazing controlling abilities(?).

Another tech who came into my room to work with the nurse let me know that tomorrow, I would no longer have the pain button and that I needed to get used to the fact that the button would be gone. WTH? Get out of my room, I guess you don’t care about patients either. Authority: why do people who have no authority want it so bad?

Next, I learned about the patient alarm. If you sit somewhere, and you are unsteady, they will put an alarm under you so that they will be called to the room if you stand up. This way the staff can know if you are acting dangerously.

My cannula was part of an alarm system as well, and it started going bad on the first day. All patients on the pain drip had the cannula to oxygenate them as well as to set off an alarm if the cannula came off or the patient was not breathing enough. For me, it was closing my mouth and not exhaling and then inhaling that kept setting off the alarm. On day two, I asked if they could get a new cannula for me, this was after we wiped my body clean. I told them the cannula kept coming off of me, I couldn’t keep it on because it got crimped (?) or something? The nurse assured me that she had changed the cannula, even after I asked her specifically if it was changed. She left the room.

Don’t question me stupid…

My hair is long and while in hospital, I always keep it braided. When I was moving that morning, my hair kept pulling, upon feeling my back, I found putty glue, glued to my back and the cannula. I never received a new cannula, the techs simply glued the old one to my back with clear putty. I didn’t discover this until I had chased the respiratory therapist away because she was going to “repair” the oxygen machine. WTH?

Photo by Hal Gatewood on Unsplash

In the meantime, I continue to be in terrible pain. The alarm for the oxygen goes off continuously. I thought it was me, but the tech told me that it happened to everyone. All of the patients on the pain drip had an issue with the alarms going off. The techs might come into my room because of an alarm and leave without addressing the alarm, so the alarm kept going. Sometimes the staff would leave my room without telling me what was done, or without answering my questions.

Equipment did not work properly and no one on staff can fix the equipment. Alarms went off for twenty minutes at a time with no relief.

Intro to Apathy

Technicians were losing interest and wandering off without completing tasks.

Morning 3: It is Friday morning surgery was on Wednesday morning.

The tech came in my room to tell me I had to sit up. She said everyone had to sit up this morning. This seemed like a very good idea and as long as it was okay, I wanted to try. Without informing me, my tech set me on an alarm set for 1.5 hours without telling me. I didn’t realize what she had done until I tried to move.

There is nothing liking taking choice away from them dumb patients…

For the last 15 or so hours I had been thinking about discharge and now the decision was made. I had to leave this hospital. It was as if the staff had an attitude with patients. Patients did not seem to have feelings or thoughts about their care, patients could not make decisions, opiates were evil and patients couldn’t control themselves. I called the Physiotherapy department at the hospital and requested their help. They were happy to assist and took me off of the alarm immediately. They told the nursing staff that I was cleared to ambulate and did not need the alarms.

Take control of your healthcare they said…

I told the nurse, I didn’t want to switch to the weaker pain medication as I did not believe that the nursing staff would come when I requested pain relief. I believed that on top of being in pain, I would also have to wait for my medication. I explained that I was very anxious about pain relief. Of course on the very first medication delivery the nursing staff proved my anxiety as correct and delivered my oral medication late. The nurse came to my room later and told me “the doctor said you have enough pain relief you need anxiety relief and he has prescribed Xanax if you want it.” I thought to myself “of course, I want it.” To her, I only said “thank you”.

JB Collection

I went to work on a discharge plan. I found out I had a discharge planner and he could help me. At first, he advised a nursing home (?). I told him that I was going home with my husband. Physical Therapy wanted me to have a walker and so the discharge planner made it happen. I called my doctor’s office and was able to speak with them about discharge, they assured me that my medications would be called in. I would also be assigned to home health care and at home physical therapy. That all sounded wonderful.

With the discharge confirmed and scheduled I had an emotional moment while alone, and I took the IVs out of my arm. They were not hooked up to anything and were simply standing ready for medication input. They were unnecessary. I did this so that I could regain control of my own body. The nursing staff had been so disrespectful of me and my body that I really didn’t want them to have any more control. I didn’t want them to touch me. I didn’t want them to slow my discharge or make any more snide remarks to me. When the nurse asked me why I took the IVs out, I couldn’t answer, I was so upset about the way that I was treated by them that I could not even answer her.

I’m not sure why it is so difficult for me to process things while they are occurring instead of figuring it all out later. I’m not sure why I need to write it all out. I just know that these things are true about me. While things are occurring, my feelings are clear, but the ability to articulate fails me.

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