Everything with Lu sort of calmed down after the MRI. Her symptoms are still there, but they are stable and we still don’t know what’s behind them so we can’t really be proactive. There likely won’t be any new, big information until we start talking about eye surgery in the summer. Thank God for insurance – they have paid out $28,486 since this began. Still no diagnosis or treatment plan. We had a hard appointment at the urologist yesterday – one of the only times I have seen LU be miserable, and it broke my heart. There was an interaction where I didn’t feel like the practitioners understood her symptoms either and all-in-all it just tapped my energy.
I was brushing Lu’s hair last Friday morning and it appears she has had a home haircut – VERY noticeable *short* spiky front section. But she denies doing it or recalling who did. I thought we were past the danger age on this. I thought I had dodged that bullet – she is 7! I can’t figure out if she REALLY doesn’t know (like, was she sleep walking? Is this some sort of new neuro symptom?) or if she’s lying really well. I told her I wouldn’t be mad I just needed to know what happened and she wouldn’t tell me and I WANT to think she is lying. But I can’t tell! (So, local friends, if you can get the story out of her, I would be so appreciative. She’s lying, right?)
Cole has successfully stepped down from his old medication and begun the new. I am cautiously optimistic – it does not work in the same way as the old so it is a decided change, but his teacher reports good attitude and focus at school and he *seems* to be having more positive interactions with peers so I’ll take it. But So Much Energy. He is Tigger literally bouncing off the walls of my house and it is jangling my nerves.
My busy season is winding down – I slept in my own bed only FIVE nights in March, but sixteen nights in April so that was an improvement and that’s better. (I *love* my work. I feel strong and supportive on overnight shifts – here is a place where there are questions that I can ANSWER. Where I am genuinely helping and I feel appreciated – AND getting paid. Just saying that messing with my sleep cycles is also possibly not helping me.) My stress and anxiety have been so all over the place that it has taken a real toll physically. I have gained weight since January and I was hardly starting from my ideal so I feel unattractive and uncomfortable in my own body. Something happened last week and tripped the circuit and I have NOT been eating so I need to find some balance and get myself to a healthy place. It is not just the weight – I have been having severe headaches over the past few weeks. Debilitating to the point of forcing me back to bed, and we had to pull over on the way to Boston so I could throw up. My whole body aches from tension – I always am on edge, waiting for the next crash. I have significantly pared down my commitments outside of home and Baby To Go and I *hate* that. It is not who I am – I am ALWAYS busy and involved, and I feel like I am letting people down, stepping away from projects that are incomplete and/or not following through on commitments I have made. Something has to give. 2019 is swallowing me whole.