Day 5

Today might’ve been a bit of a setback. I had so much pressure behind my eye, and my vision has been so poor that I told my team. This is a big problem for me, and they agreed to give me an oral steroid.

After being on this for a day and a half of the pressure released, and my vision improved significantly. They did mention that this is quite normal and would have gone away on its own. But I’m so glad that I had this option to help speed up my recovery.

Even when that was getting better, I woke up this day, and I had severe ataxia as well as discoordination. I tried to open cabinets or pour things into cups, and I was not able to do it. For me, this is very similar to when I jumped up on a dose of lamotrigine. I called my neurosurgery team, and they told me that I needed to get a new MRI and to go to the emergency department.

It has been frustrating; I’ve been to the emergency department so often in the last few months, and it is the last thing I wanted to do. Also, I was feeling so good sitting and reading books and having great interactions with my toddler.

Another part of why this might have been happening is because I might’ve been doing too much and resting too little. I’ve been cooking meals, watching my toddler frequently, and trying to read him books and play games. I tried to rest twice, but I was not able to nap. I lay down in my room maybe for 10 to 20 minutes at a time.

I think this was a perfect storm to have the setback. My toddler was very upset when I had to go to the hospital again and reverted to his anxious, repetitive questions.

I feel guilty for this too,

Nothing significant has changed on my new MRI, and the pneumocephalus seen in my postop MRI had resolved. There was some blood in the area of the resection, but this was not a concern with the surgical team. They said that was expected.

It is 9:30 pm as I’m writing this, and I don’t think I have the energy to draw or paint. I need to force myself to rest throughout the day to step away and take breaks.

I hope tomorrow is much better. One good thing is that with the pressure releasing behind my eye, I am not needing narcotic pain medicine today, and I felt comfortable enough with Tylenol.