I Quit Life! - I Get The Chronic Disease Medical Cycle (Updated 8/30)

There is a lot of hopelessness that happens when you have chronic diseases. It isn't just the disease itself, it the medical cycle you go through that can lead you to a black hole of nothing. Just in the past few months I've had the endless hole of nothing over and over.

Before I start this whole mess of events, I should say twice I declined a treatment a doctor suggested. I declined one because my insurance company wouldn't cover it and the doctor who sent me to that specialist said he didn't feel I needed the study they wanted to do. The other time was for me to go to a clinic. I've been to this specialty clinic before. I explained my reasons for saying no to it and the doctor who suggested it agreed with my reasoning but I have a doctor who you will see later constantly uses that as me being "very non compliant with treatment."

I should also say that as a patient, I have every right to decline a treatment. The second treatment I mentioned at the specialty clinic, I went to religiously for a year...or I tried to go for a year. My problem with returning is the same reason the treatment was stopped before...the doctors don't show up. You have one day to show up. You have to be there at 7 am, if you get stuck in traffic for people going to work and are there at 7 am and 30 seconds, you are sent home. But you are also one of 2-12 patients waiting on that doctor, who never once began seeing patients at 7 am. They could be in a meeting, they could have a class to teach, they could stop to someone in the hallway and then have a meeting, or you could be patient 8 in line and they ran out of time at patient 7 and have a breakfast or lunch to get to. Then you are given another appointment weeks or months later and told to come again. You spend time getting there, pay to park in the garages and can end up going home never seeing a soul but the lady who took your copay. Over the course of 12-13 months, I saw a doctor 3 times despite the fact that I had an appointment at least once a month, every single month. So I declined this treatment when it was brought up by this doctor and we agreed that it was fine.

Twice I have declined a treatment but the words declined treatment appear more often than that. Just this year, I had an occupational therapist who wrote on my hospital file that I declined a Tylenol from my nurse so I wasn't in pain. I didn't actually decline it, my nurse never offered it, the OT did. But I have a problem with that med. When I have an infection in my system, I tend to hold onto another med and when you add Tylenol in it, together they give me liver enzymes so elevated from a number standpoint that I technically I would be in liver failure from the other med poisoning my system. I was in the hospital with sepsis from an infection they couldn't pinpoint. I was offered a Tylenol and said I wouldn't take it without speaking to the doctor first. It didn't mean I wasn't in pain, it meant I didn't want to put myself in a worse medical position. But my medical file forever says I declined Tylenol so wasn't in pain.

The biggest problem with these things in my file is when it comes to days like last week when I am told to go to the ER, if they look at my file they are there. Or when they call my primary and she tells them I am a very non compliant patient (because there's two things in my file from other doctors I declined to do).

I was having issues controlling my BP along with severe head pain that had online increased over the course of 4 weeks. But part of the problem is over the past two decades...I have become used to being in pain. I know people who would stay in bed at some of my lesser pain levels but I can't because I would lose any attempt at living if I sat everything out for pain. So if I can do, I do. And I will cry and be in pain but I have to push through every day so I have two decades of learning how to cover it on my face.

So I had horrible head pain. I had been waiting for an insurance authorization on an infusion the neurologist's office thought might help but the longer I waited, the more I was told by the office if it gets too bad go to the ER. Which I fought until Thursday. On Thursday, my BP was so high and head pain so bad, I couldn't take it an went to the ER. Unfortunately, I also added a squeezing pain in my chest on the way to the ER (which even through I said it felt like a hand squeezing my heart every time, magically my medical record says I had a stabbing pain). I ended up with that pain coming and going, BP that was really high (you don't even want to know but I've had that before and normally get rushed into a room right away), and the head pain, and I sit in the waiting room for an hour in tears. But my discharge report says I showed no signs of pain. I was in a room, saw my resident once and the other doctor once when he said my resident wanted to know when my last CT was, other than that it was only my nurse even thought it says they followed up with me. My nurse saw me lying in a ball and in tears...but I showed no signs of pain. I have basic neuro exams all the time, it says mine was clear...except they didn't do any neuro things. I didn't squeeze a finger, push pull...nothing. I sat in tears but I wasn't in pain. The problem is..neuro and cardiology told me to go to the ER if it got too bad, the pain was too much, BP too high...and the ER resident called my PCP. I heard them page the resident for a call from my PCP and after that, they had decided I was a a patient who "is very noncompliant" with treatment. That I couldn't possibly have taken my BP meds even though I have alarms in my phone (that went off while I was there) for my times, even though I monitor 4 times a day and chart for my cardiologist, even though when they give them to me in the hospital, I don't always respond when I am in pain elsewhere. And I couldn't be following my IH treatment because that's why I'm in pain...but wait I thought you said I wasn't in pain. And I must not be taking any med and wasting money each month on nothing.

"Patient was reevaluated. Headache and chest pain resolved." Whoa...didn't you say the line before that I wasn't in pain? And didn't I say to the nurse that as they kept pushing BP meds and lowering them that the head pain was worse? "<pain med> ordered for pain." Whoa again there tiger...if you resolved my headache and chest and got BP down...why are you giving me a pain med for the pain you said I wasn't in to start with? I'm slightly confused, it could be that I have a brain disease or it could be that what you are putting in your report makes no sense.

This is the problem when for me because I have chronic diseases that involve pain...I am used to a certain level of pain and if I don't show it successfully, they believe I'm not in pain. I am looking for drugs. I never asked for a pain med (much less one that wouldn't work on my head pain). I needed to try the infusion or something to bridge the gap until the infusion was done. They could have done a lumbar puncture, which are done to measure IH pressure in the head, they didn't.

So as a community I am a part of mourns another person who gave up on their battle and quit their life, I can honestly say I get it. No, I'm not suicidal but I get being at the end of your line. I get being disbelieved because their machines can't read it or they don't know what it is. I get it that point where you are in a medical black hole and there is no light shining in.

A couple of months ago, I was annoyed on a PCP visit and she said I sounded like I was giving up. And I said I wasn't, my medical team gives up. If a med doesn't work the way it should or I don't respond how they think I should or I decline a specific treatment route, I am marked as giving up. But when they refuse to speak to each other or read each other's notes or listen when I explain something that a doctor said or when they write things in your chart (like another mental eval) they don't mention to you but another doctor does at your next appointment...they are the ones giving up. When they are sending you in circles because it's "not their department" and refuse to plug in a piece that fits from someone else...they are giving up and throwing away that patient for the next.

So no, I haven't given up but I am fighting a group that holds all the keys that have....

8/30 After a follow up with my PCP, she and her nurse say they never even got a call about me being in the ER. So that brings another line in the circle, it's always someone else said.

#ER #intracranialhypertension #rheumatoidarthritis #hospital #chronicpain #chronicdisease #blog