Is It or Isn’t it? Flare-Up Edition

Life can be many things. It can be filled with joy, love, and happiness. Life can also bring darkness, tears, stress, and fear. It can bring you luck and it can throw an asteroid at your face. That’s how this neuromyelitis optica (NMO) flare was making me feel all at once.

But there was just something different about this flare up.

Hospital admission

I was making my way into my hospital bed. I was feeling tense and being in hospitals is always an exhausting experience. I can never sleep in them. One by one nurses and doctors started making their way into my room. I was answering the same questions from them in a million different ways. The joys of being admitted with NMO.

After about an hour of this, a new doctor came in. She introduced herself and asked some basic questions about the flare up and explained that pictures showed no sign of anything happening as far as lesions or swelling. With that another MRI was ordered - I figured that would happen. But this is where things started to get messy. She told me my port was going to be put in soon, and I would start treatment in the morning. Cool, this was all moving along swiftly.

Side rant: I absolutely HATE being admitted to a hospital on a Friday or the weekends. Even before the doctor and nurse shortages, it was still a nightmare on the weekends. It felt like nothing would ever get done, I swear.

Port procedure

This doctor was right though, and a man came up to my room to put in the chest port just like the last time. I was in an almost a mini surgical room last time, though. But that had been almost eight years ago, so things can change.

He proceeded to break down the plan for me, this time the port was going in my neck instead of my chest. The process went smoothly and I must say no pain, but it felt super awkward when I would swallow. But overall, the port was good and had no other issues the whole time.

The rest of the night was consumed with endless wake up calls to check my vitals, and doctors stopping by with all different directives of what was to come. By different directives I mean they all did not read previous notes about me, or update each other on what was truly going on with me.

The frustration was building. No one would listen to me.

Early morning MRI

It was 4:00 the next morning, and I was being brought down to get an MRI (which I knew was coming), but at this point I hadn't slept. This was way too early for all that banging around. Truly unpleasant and for the first time, I had to push the button and be taken out. My head was literally banging side to side in the machine. Never had this happened and with the port in my neck, I had a panic attack.

Once I was back in my room, the feels were creeping their way into me. I was exhausted, sore, and beyond confused on why things were going this way. I had an understanding (I thought) with my main doctor. I became a terrified 19 year old again in a hospital bed, desperately wanting my mom.

PLEX treatment

At this point the doctors were coming in and letting me know I’d be getting my first PLEX treatment (plasma exchange) that morning. At least that was one thing I was fine with getting started. By this point my aunt had arrived and had been trying to calm me down. I understood the staff shortages because of the weekend, and I knew everyone was trying to help, but it all felt like torture.

Luckily the guy came to do my PLEX soon enough, and at least that ran smoothly.

Quickly after the treatment, a doctor came in asking when my first PLEX would be. They had no clue it had already happened. She was confused as well to why the port was in my neck and not my chest. I explained all the mess that was going on and she was even more confused.

What happened from here on out was 100 percent my choice. I don’t recommend doing what I did.

From this point, I was offered the option of out patient. I declined. I was not happy about the port being taken out of my neck, to then get a chest one put in. I tried to explain and they didn’t listen. The next option that they kept throwing at me was to also start steroids. Again, I declined. Not going through that and I had also strongly declined steroids several other times - but nowhere in my files did anyone put that in. They tried even more every day to do it, but it was not what I wanted to do. I understand other people may decide to do so with their doctor recommendations.

I decided to request more PLEX treatments. I had no desire to stay any longer. To no surprise, none of them took me seriously. I was frustrated, annoyed and sleep deprived. No sleep aid or anxiety medication would crack my stress. I just asked for open minds, honesty, and the respect of my personal choices. None of which were considered.

One more surprise

I’d been up almost 48 hours. Between the doctors and my mom coming to see me, I was broken. I’ve never hated NMO as I did at that moment. It was truly a day in hell. But even though the day was ending, they had one more surprise.

As I said from the beginning of this attack, something felt off. My MRI results were back in, and they were clean. There was zero sign of a flare up. No lesions, no swelling. It was hard to know what had been happening, and why my body felt like I was in a flare up.

Has anyone else thought they were experiencing a flare up which turned out not to be? Share with us in the comments below, we love to hear from you.