SoManyMeds

You know what sucks? Being medically complex. Being the parent of a medically complex child. I don’t mind the doctor appointments, the advocating, the late nights, or the medicines. #SoManyMeds What I hate is watching them struggle because I don’t know how to help. It’s the repeat infections. Their face when they have to go back to the doctor. The fact that they know how to give a blood draw, the names of all their medicines, and are learning that they’re different at school.
It’s having them cry when they wake up because they’re tired. And then, then coming home in tears because they’re tired. It’s the weight that’s placed on them to decide to miss extracurriculars for sleep.
It’s the fact that we don’t know what causes the multiple infections. We don’t know if the treatment is right. Shoot, we have a hard enough time figuring out which medical issue is causing the symptom.
I’m overwhelmed. I’m stressed. I’m procrastinating on tasks because I’m stretched too thin. I don’t know how to do this and be a good #medicalmom . It’s hard.
My poor baby. She was in pain for days. We spent her whole Sunday in the ER treating the WRONG symptom. Two more days of pain. Finally, she’s getting better. But, getting better leads to more symptoms and issues. I just want her to feel better. I want some clarity on how to make her feel better when she’s feeling down. I just want answers.

Being medically complex sucks.

Went to my first real psychiatrist appointment today and was officially diagnosed with Bipolar II. Mental illness on top of a debilitating autoimmune disease is extremely overwhelming. I’m on so many meds and supplements it just boggles my mind, and starting infusions of a new biologic medication next week. I’m hopeful, but really scared at the same time. 😔