Battle Hymns of a Hot Mess Mom

Echo went well so did the labs as well as the dressing change unfortunately all of the appointments led to a very late appointment with Dr. P. He noticed immediately that eye issue and ordered me some eyedrops. I guess the triage nurses recommendation of warm compress wasn’t cutting it. So I currently go through life with one eyeball open. The current prognosis we stay the course today will be by T cell Transplant and then I completed my echo yesterday which means all I have left is an eye exam on Monday and I could start the study drug then it’s wait-and-see. It doesn’t sound very exciting because it’s not. Wait and see if completely out of my control.

I can’t control this back and forth insurance drama with Cobra and HR. Both pointing at each other. Delightful. I can’t control the new study medicine that has a heart attack as a side effect. I can’t control my kids bickering on their way to school today. I can just tell them I love them and to have a good day.

What I can control is not living their lives through other peoples photo lenses staying at home and watching them live life I can control that. I don’t want their memories of me to be mom being sick of being in bed at home. i’d rather they see me there cheering for them clapping for the. I’d rather they remember mom wore every shirt and three pairs of pants just to come out and watch us play. So the wheelchair was purchased I’m sure it’s an extra step to take me to bodied people I’ve been annoyance, but I really don’t care if I’m an inconvenience to take somewhere. My kids are worth it for me to be there. My kids are worth it for me to be an inconvenience.

Truly I can’t control a damn thing but wallowing in self pity isn’t helpful either. If I really am feeling unwell, I will stay home but if I feel like I can participate and be a part of the memory, I want to be there. If I have the energy at night to bake a chocolate brownie with her, I’ll make a chocolate brownie and if I don’t, I’ll watch. Today is a rough day but hemoglobin has already dropped a 6.6 which means I’m not getting enough oxygen in my body but it’s also Transplant day so I’ll have to do a go slow. I have a virtual appointment with Dr. B at 9:30am I’m currently making soy milk from scratch thank goodness there’s a machine for that.

Doing everything from a barely open, right eye is not conducive to being productive. There will be plenty of spelling grammatical, and every other errors on here. Have to take a short nap on the couch before my doctors appointment.

1:49pm I’m all checked in and now waiting. My and my one eye ball still struggling to see. I’m super tired but with hemoglobin dropping to 6.6 I’m not surprised.

The procedure started around 2:15 in the afternoon and from then I was out I got carried out of the car carried upstairs. It was complete blur. I slept until 730 this morning enough to do her hair and go back to sleep until 9:20am. My eyes are still burning.