The NMO Experience: Reflecting on 2022

It feels like yesterday that we were celebrating the 2022 new year. It was filled with hopes and dreams that whatever difficulties we had to deal with would be a distant memory, which seems reasonable. Unfortunately, we are living with NMO. A chronic illness that we will, unfortunately, live with forever. That is, at least until they find a cure. I'd like to say that 2022 was a progressive year; however, it was trying, and I have much to say about my 2022 NMO experience.

The first months, trying to get doctors to treat my NMO

To start, I spent a lot of my time on the hunt for new doctors to treat my NMO. 2021 was a disaster. It's always the same song and dance when it comes to doctors dealing with patients who have a chronic illnesses. THEY DON'T LISTEN. It's a good feeling to see a new specialist and feel like things are going well. But then, eventually, you start to figure out they don't know anything about your disease.

By January 2022, I had already found a new neurologist, primary care physician, and gastroenterologist. Needless to say, January was busy, and I wasn't in any mood to continue to deal with these types of situations any longer.

The mid-year chaos of my NMO experience

Three months into the year, things just kept getting worse and worse. I was so swollen due to the morphine in my Baclofen pump. I started having horrible back pain, and I was convinced that I got a new lesion. I thought I was having an attack due to my symptoms.

I was told that my MRI didn't show any changes and that I was probably having a pseudo-attack. My pain level was entirely out of control. I kept having spurts of severe fatigue. Worst of all, I was on the hunt for new doctors again.

When s*** finally hit the fan

Luckily, I figured out that the swelling was because of the morphine in my pump. After my doctor removed this, I started feeling better.  I was so excited that I was progressing! I also found a fantastic primary care doctor who listened to my needs and got me the type of help that I needed.

And then I got COVID. This was the worst thing that could have happened to me, especially since I never leave the house! It was the worst.

The combination of COVID with NMO was horrendous. Because of this, I ended up with a new lesion. To clarify, a lesion on my thoracic area - that I was never told about - extended to T4. I haven't been okay since.

The end of 2022

Unfortunately, I only got worse by the end of the year. The new attack I suffered in July resulted in increased pain and spasms that are next to impossible to deal with. My quality of life seems nonexistent these days. I spend most of the time in bed because of the pain. I really wish I was able to do more with my family. It's not fair, but here I am.

By the end of the year, I had a lot of time to really think back about my NMO experience since my diagnosis. A lot of mistakes were made, and I really wish I had more support and more education to protect myself.

Celebrating the new year with hope

Now that we are in 2023, a lot will change. Unfortunately, that (again) includes some of my doctors and my attitude toward how I see and respond to things. My foot is down, and I won't make any more mistakes.

I am determined that 2023 will be the year of Shekita! I want to see myself smiling again, having fun, and accepting myself entirely!