Let's talk about adherance.
Like adherance to what your doctors tell you to do.
Let's talk about how when you give birth to a child with a complex medical condition, eventually YOU (yes YOU, the parent/caregiver) get sick yourself.
NO I am not talking about a cold or the flu.
I'm talking about chronic illness.
Like stress related chronic illness. Cause you can't spend the amount of hours in a children's hospital that I have and NOT get some kind of illness or disability.
Let's talk about money, as in you have no money to pay for that MRI your doc ordered because you are fucking dead broke cause you have this sick kid and every little bit extra goes to pay to travel across the country for her medical care.
That MRI is still $1500 AFTER your coinsurance, after your copay.
But now doc your yelling at me that I don't "take care of myself". And "you know the whole oxygen mask thing".
If I hear one more person say "put your mask on first"......
Look doc, I can't pay for it. I can't. I pay for medical insurance that I can't even use. Why?
Because I make just a smidge too much for state Medicaid.
Doc, I can't even pay my electric bill in full every month.
My Husband and I live on less than $38,000 a year. For 4 of us. And I just opened a bill from the enteral feeding supplier for $400....WHAT?
I have a hiatal hernia that causes me to vomit into my mouth at night that then goes into my ears and burns them. I'm sure you know doc how all those things are connected....
I have cluster headaches that put me on my ass.
I have a cyst in my sinus that causes me to not be able to breathe out my right nostril.
No I didn't get the sleep study done doc, I couldn't afford the copay of $250 to have it done. But I've probably got sleep apnea. I mean I do fall asleep behind the wheel of a car - with my children in the backseat.
I've got 10 teeth in my mouth that need fillings or pulled or root canals. I just wait til they go black and absess because all I can afford to pay for is the $100 to pull the tooth. Call me REDNECK DANI from now on....
Look, Im doing the best I can. I work 20 to 25 hours a week, go to full time college, and manage her care. Her care alone is a full time job.
So don't tell me to take care of myself. I don't have the time to. Let alone the money.
Because Doc, I'm just trying to put food on the table and keep the roof over our head. Neither my Husband or I make more than $13 an hour.....I make the same I made in 2009. Working for the same company for almost 9 years, and never one increase in pay. So you tell me how you expect me to pay for that MRI, or that sleep study.
Doc, we got to fix healthcare now. Cause if we don't - you're going to have medically complex children without parents to care for them because we will all be incapacitated.
Doc, you have made it so these children can live, but you have not given us the tools to raise that child.
You have made them compatible with life, but it's not a normal life. They can't do what other children can. Which means I can't do what other parents do.
SO yeah, doc, I know I will be having triple bypass surgery at 56. I figure a zipper scar will look good on me, at least she and I will have matching scars.
You don't provide us with mental health care, or social work to help us navigate it. You've gotten better since 2007, but it is far from good. And those of us from back in those times, you have neglected and not offered anything to us. You just figure since we put on that face of "I can handle this" - that we are.
Oh I am handling it - I am. I'm taking care of her. Ensuring her survival. But you know on my days off and she's at school, I sleep the entire day. That is not normal. Especially after I already got 8 hours the night before.
Fix healthcare now. I want to help you. I have great ideas. Single Payer. It is the only way we can continue to survive.
So what I am trying to tell you doc is I don't pay for health care - I pay for sick care, and even at that, its only when its REALLY sick care. Cause I don't have the money to pay for anything unless it is really that bad.
Then you have the nerve to question my pain level. Oh that's a whole other blog post.....