Mayo v2

They don’t listen. Does anyone listen to me? Do they think that just bc I’m disabled or bc they’re ‘abled’ they know better?

I’m really pissed at the way I was treated by Mayo this time. At no time was I given a voice over my own care. They had a script they wanted to follow to treat my migraines and background pain that failed during outpatient treatment. It also failed during inpatient treatment bc it was basically the same.

The nurses were fantastic, but I have to say that the docs were not. I don’t know if they have some sort of hidden agenda as to the primacy of migraine or not, but they don’t seem to recognize cluster headaches. There is no protocol on how to treat cluster headaches and they don’t really seem to be interested in it either.

At no time did a doctor really listen to me. I thought Dr. M did, but reading her notes on the patient portal, she wasn’t listening either. She was hearing what she wanted to justify the protocol. I only saw Dr. V twice and that was for her to say that even though I don’t see her, she knows what’s going on and then again to basically say goodbye. She’s going on sabbatical and I’m being handed off to another one of the neurologists. The rest of the time, other docs came in and made judgments about my migraines and medications. I kept trying to correct them, but no one would say clusters.

The night before I got out was hell. The triad of docs had visited me and told me that I wouldn’t be getting any more pain meds or tranqs and that I was being released the next day. (I was nowhere near release, especially if they took the meds away.) I explained to them, as I had before, and begged them to leave me on my normal regimen until I left the hospital. I knew my clusters and I knew what would happen if the shield went down. Nope, no more meds. I told them, fine, you’ll come in tomorrow and find an oozing hot mess. They just looked at me. I think they were androids. Around 21:30h, a cluster came on that was a little more than I could handle. I had a great nurse and she was able to get something for me from the on-call. I went to sleep.

My 02:00 woke me up and was more severe than normal. I also needed to go to the bathroom. I had the little leg massagers on, so I needed help. The CNA came in to take the connecters off of my feet and help me out of bed. She escorted me all 1.5m to the bathroom and waned to stay in there while I peed. I told that that I was fine and could take it from there. She was being extremely aggressive.

While I was trying to get things together and my head cleared so I could remember how to tinkle, Jr. went off. I said, Jr not now. Be quiet and went to turn the pump off. All of a sudden, the door opens, she whisks me around, knocking me down with the pole and tells me to never touch the pump, that I’m never to touch the machine. By now, the fight had been triggered and I told her that I had been using that pump since she was born. She still kept fighting with me. She was very loud and aggressive. I still hadn’t gotten my pants above my knees.

The night nurse came in to do the 02:00 meds a little late and noticed the scuffle. She yelled at her coworker about the pump not being important and her having told me to shut it off. She apologized profusely to me, calmed me down and got me back into bed. I went right back to sleep. I woke up around 5:00 the next morning. I ate breakfast, had my morning meds and about 07:30-Boom! Level 9, nothing but O2 to use. Everything had been discontinued as of 6:30. I was out of my mind.

The triad came in one last time. I was begging them for something for pain, but they wouldn’t budge. It was obvious that I was in huge amounts of pain, but they stood there and talked at me. They talked about my discharge and what I needed to do and not do when I got home. I told them that I wasn’t ready to go home. I was sitting there crying and sucking down O2. Even the nurse told them that I wasn’t well enough to go home. It didn’t matter to them. The protocol had run its course and they had nothing else. I asked them what I was supposed to do? Go home and shoot Benadryl? Find a prescribing doc? Find a doc to prescribe pot? Nothing. I didn’t even get a reaction out of them. They just turned around and left the nurse to calm me down.