There's been so much to say lately, but no energy to post it. I've been struggling all summer to keep my head above water -- if by water, we're meaning the physical exhaustion of working a demanding job and the fear that every new twinge means that something terrible is happening and I won't be able to keep my job and therefore lose my insurance.
It's been bad.
Health wasn't too bad till one night about a month ago. Methotrexate reaction, ambulance, ER, sat all night and puked on myself, stoned on whatever medicine was supposed to making me not puke. All it accomplished was making me too out of it to care that the cute little student nurses had to change me and clean up after me. If they'd answered their damn call light when I needed them to hand me the stupid bucket (excuse me, enuresis basin) they wouldn't have to clean me now, would they? I was sick, stoned, alone, and miserable.
The next week, I went back to my rheumatologist, ready to discuss what happened.
The office manager comes in instead.
Not good. At All.
I owe over $1000 for my last remicade transfusion. Apparently, the insurance gave us the wrong information.
I had an intervention with the doctor and the office manager, helping me figure out how to switch to a drug that is cheaper. I wanted to talk about my misadventure in the hospital. They wanted to talk about co-pays.
(To be fair, I think he avoided talking about medical issues because he didn't charge me for an office visit.)
Michael Moore, whereforartthou?
This is the first time in my life that cost has actively made the decision of what medicine to take for me. I've always thought that I would take care of health first and everything else later. No question -- I need my medicine to survive.
In the end, I was sent home with instructions to call my insurance company and a contract to pay the $1000 I owe. I put it on a credit card because 20% interest for the rest of my life can't be a bad thing.
I was also sent home with no remicade. Bad girl. No IV drugs for you.
It wasn't as if they refused to treat me because I couldn't pay. That sounds unfair. It was they didn't want to sink more money into me via IV if I couldn't pay it back. It's a private, one-doctor practice. To have a few thousand dollars debt on each remicaid patient would sink them. I understand that, I understand that it's not a hospital where you can finance things indefinitely. I remember bills for my dad's treatment going out years after he died.
Still, I felt a little like I was being turned away from the ball. If that tells you how strange my thinking is these days -- by the ball, I mean the privilege of having a relatively new and untried poison poured into my vein via an IV for four hours to turn off vital cells in my immune system that also prevent life-threatening infections. THAT was the privilege I was being denied. Damn. Cinderella's got low standards for her idea of a good time!
(Honestly, I wanted to dump Remicade anyway because it's recommend to take with methotrexate. After this last ER incident, I'm done with mothotrexate. 12 years of it. Good bye!)
The ambulance ride will cost me $600 after my insurance pays its $350.
I can't imagine what the ER will cost. It will be a 30% co-insurance on everything.
All summer, I was caught in this horrible tension of needing to work more to get more money to pay for my health care, but not being able to work more because of how crappy I felt. The good news is that my coinsurance has to hit the $2000 stop loss limit soon and then they'll pay for everything. I decided, dammit, for all that I have suffered this year, I'm getting a scooter!
Specifically, this one:
Wouldn't it be bitchin?
Oh, and breaking news: Sicko Part III The Revenge of the Sicko
Today I got a call that I got hired as a speech aide in the local elementary school. Seven hours a day. No caregiving. Lots of paperwork. I'm torn between my heart cracking down the middle when I see my kids at conductive ed and wanting to scream for joy that I have a job I can do. As I get further and further from my recommended remicaide date when I was sent home with no medicine, I feel myself getting achier and more desperate every morning. I drive to work thinking "Don't hurt yourself; you can't afford it" The next logical statement would be "Don't be in a job where it's likely you would hurt yourself."
My PT says that it's like being a compulsive gambler. I have only so much energy and wellness. I run on a constant debt right now. I'm on provigil, predisone, methotrexate, remiciade just to function. And instead of functioning, I push it to the limit. It's like if someone is in debt and you loan them $1000. Instead of paying off the debt, they go spent it in Vegas, happy to have the money for a second. But they are worse off than before. I am a compulsive gambler with my health while I do this job.
When did I become so scared? I remember the nurse in AmeriCorps trying to tell me how foolish it was to go in to AmeriCorps and I was so offended. I ran extra miles, did extra trips with the wheelbarrow, showed what an unstoppable force I thought I was because I thought I could will it all away. Now, I get frustrated with people who think like that. I sense the women at Conductive Ed think that everything is in my head. You don't see pain and fatigue.
I can relax a little this weekend. I am off the hook. If a knee hurts in my new job, I only have to figure out how I am going to get around it, not how everyone else will be effected. I feel so much better even as I really grieve about leaving conductive ed.
I know that it all starts over soon -- the deductibles and preapprovals and learning a new job. But now my energy is not tied up in surviving, I can handle it.