Taking Back My Voice

I worked so hard last year coming to terms with my bad eye, and trying to make the best out of life with NMO. I continued down a path of really letting go of all the negative in my life, to only come to what felt like manipulation. I felt like things were being forced onto me, almost like I was entering a cult. Or I was just that exhausted.

I can speak without thinking, that's just how I've always been. And sitting in a hospital bed for two days with no sleep, recovering from an NMO attack, my mind wouldn't shut up. At that point I knew nothing was going to the original plan and it was getting to be too much for me.

It is important to understand before reading further, that discontinuing treatment against the advice of doctors comes with risks, and those risks should be discussed with your doctor.

Disagreeing with my doctor

I was having one of my more quiet days. At that point it had been over 48 hours of no sleep. I was speaking to a new day nurse about how I did not belong in the hospital, there were people with strokes sitting in a hallway with no bed, and here I was sitting on a bed with no pain, but dark circles under my eyes as if I was a zombie from lack of sleep.

It was unfair and I was not okay with it. The nurse understood where I was coming from, but said I also needed to be there.

Later in the day a doctor came in, and as always we had to start from the beginning and explain my frustrations. We strongly disagreed about my hospital stay. Being there could be helping my eye but that was it.

Vision was coming back, but my stress was making me feel crazy. I truly think they thought I was crazy between all the different social workers they sent down to me. They treated me like this was my first time, and like I knew nothing about what was happening.

Like I don’t know my own disease and body. I almost questioned myself a few times if I knew what I was doing.

Side note: yes the vision was coming back slowly. But none of the doctors cared or made a comment when I said that.

Reading to explore new options

From there, I took a stance. What I was going to do was annoy a lot of people. Tell them what I wanted and what I wanted to try. But my voice meant nothing. My 18 years with NMO somehow gave me no credit.

I was in a state of mind that was ready to explore new options, outside of the medicine I had been trying. But I wasn’t going to get the help I needed or wanted here. With the vision coming back and the fact it was not a normal NMO attack, I made a choice.

I decided to leave after my third PLEX treatment. That was it. Enough was enough. I was tired and defeated, and I went back home. Some may think I was being irrational or just plain stupid. But I knew in my heart (and from years of experience and knowing my own body) that this was best for me.

Not recommended

I would never recommend anyone to do what I did. Never in my life did I feel the way I did. I didn't know if what happened would hurt me. But it was clear to me that I wasn’t going to heal any further in the hospital. I had barely gotten 8 hours of sleep the entire time. I was not in a good state of mind, but I knew what had to be done for me.

This is not a criticism of medication in general, but rather how my body was responding in a specific situation, and how the level of care I was receiving was not helping.

About two weeks passed since the incident as I write this, and I am doing fine. Vision is back to what it was and I’m thankful for that. I do wish I knew what caused this issue but I don’t think we ever will. Unless by some strange chance it could be from my enlarged thyroid, but I may not find that out either. All I can do is breathe and make it to the next moment of the next day.