Day 8

I just realized I didn’t write a post yesterday. Yesterday would have been one week since my surgery.

Symptoms today: continued double vision, continued ataxia, and frequent nausea and dizziness.

Headaches are fairly mild generally; I don’t realize that I’m in pain unless I bend over beyond my waist. When I do that, there’s a large amount of pressure.

I’m still taking Tylenol as scheduled. It was on a new medication called Jornavx. I ran out of that last night, and it turns out it was helping my pain because today I woke up with a sharp headache. I was able to pick that up and restart it this morning. The headache is gone.

My neurologist got back to me about the hospital visit and my medications.  Before titrating anything down, he did say that I should try to get off some of the medications that are interacting with my seizure meds. He noted that the scopolamine patch, narcotic pain medication, and muscle relaxer could be making my symptoms worse.

I had already been off the opioid medication for several days, so this was not a problem. I took off the patch, but I was surprised that this could be interacting with my seizure meds, as it’s typically used for dizziness and nausea.  Then I remembered that my neurologist was smarter than me and that I would listen to his recommendations.

I am hesitant to get off the muscle relaxer because of the location of my resection. My temporalis muscle was cut, and it’s very difficult to chew or open my mouth. The muscle relaxer is helping with this. Recently, I’ve been able to chew very soft foods rather than drink everything from a straw.

I also don’t want to be on this medication forever, but I have a speech therapy appointment scheduled for next week. I’m going to revisit this and hopefully have a plan for getting back to solid foods at that time.

I think my toddler is starting to get used to a new routine and a new normal. I do struggle with letting go of control because I feel like things are easier when they’re done my way. I’m sure no one has ever thought that before.

Nothing bad is happening, but it’s increasing transitions for him, which means he is more defiant about doing everything, like changing his clothes, sitting on the potty, getting into a high chair, and any other thing that is not preferable.

As a parent, I felt like I was constantly trying to avoid confrontations that didn’t matter by not asking little questions and creating a routine where essential daily things in life needed to happen before other events. That way, there was no question to ask (and hear no), but it was the routine.

Not everyone is going to parent or babysit as I do, and I need to give up some of that control. My son is safe all the essential things are getting done. There is just a lot more fighting and toddler-ing. Honestly, this is probably just developmentally normal.

My son is also getting used to me not being in the room and not helping him with everything. I still try to be present for meals and playing outside to the ability I’m capable of… to be honest, I do these things beyond the ability I’m capable of, and it’s probably setting back my healing.

I wonder if I napped more and rested more, if I would be able to look at screens. Perhaps I could read without getting a headache. Every day, I keep trying to do my best. I think if I wasn’t a parent, napping and vegging out would be such a luxury.

I told my toddler to climb in my lap; I sit on the floor. I try to reassure him that he’s here and he’s safe. Sometimes I can't really read the book he brings me, so I talk about the pictures. So far he doesn't mind. I tried to set up my family so that his routines are maintained as much as possible so that he fights them less.

This is very hard, but I’m so lucky that I have people here to help me and family that loves my son.

I’ve been painting a little bit. I decided that part of my recovery isn’t that interesting, but if someone wants to see the progression of that, they can message me.