9/21

Ethan’s arm is still a bit swollen but isn’t bothering him to much. When I came home for lunch he was editing a YouTube video, which he loves doing.

I got another call from collections today at work. I tried to explain to the lady (or man it was hard to tell), what was going on with our insurance. I kept having to say “hello, are you still there?” Because it kept sounding like they hung up. They would answer with “yea” but didn’t say to much. It was clear they didn’t want to talk to me even though I am exactly the person they need to talk to. Sigh. I can only give the information. They chose what to do with it. 

I will have to send more emails to the lady that is dealing with this issue tomorrow to see if there has been any progress working through this. We have the letter of preauthorization stating the coverage but somehow we got billed inappropriately anyways. What a nightmare. It’s so frustrating. No one really talks about the insurance nightmare that comes along with having a critically ill child that needs care out of network, 6 hours away. Well I am talking about it. It’s embarrassing that we were sent to collections and I am taking these calls at work. You never know the balls people juggle as they make their way through the day. 

I had to call the NY State Market place pending a letter we received stating there was an issue with Ethan’s current insurance and we were at risk of being denied coverage. I didn’t understand the issue so I called.

At first the lady was a bit rude. She didn’t want to talk to me and I tried to explain that I was Ethan’s advocate.   She had me go through my social, spelling of my first and last name, birthdate, county, zip code, phone number, I had to submit hair for dna testing (not really).

I had to put Ethan on the phone. I assured her that I would be more pleasant to talk to as Ethan can be somewhat of a dead fish on the phone.  He had to answer the same questions plus an additional couple of questions and then they wanted his social security number. I was calling it out to him and the lady had a fit. “Your Mom can’t help you.” What 18 year old that lost a good 6 months to focus on staying alive, knows their social security number? I didn’t when I was 18. I wasn’t even critically ill. 

I quick ran and got a paper for him to give her alternative information to bypass his social. Instead he gave marketplace id. I was feeling frustrated that she wasn’t going to help us. After a couple more questions for Ethan he was finally able to give permission for them to talk to me.

I get back on the phone with the lady who then says “he gave permission for me to talk to you. I see that you are his advocate”. ( This because we have already been through this and set it up so I can talk to them on his behalf). Luckily she couldn’t see my annoyed face.

I had to go and give the same information I had already given her, minus the hair for dna testing. She was just doing her job and as much as I was annoyed, I tried to put myself in her shoes. I don’t really like talking on the phone much, so I couldn’t imagine potentially spending 40 hours a week day talking to people who were rude to me.

“I can’t imagine what kind of shinanigans you have to put up with for the state to put such rigorous protocols in place to make sure people aren’t being fraudulent.” I said to her.

“You can’t imagine. All day long we have people that are rude, fraudulent, trying to get information they can’t have, canceling policies of their enemies…”

I told her that I appreciate people like her and that while it was a pain, I am glad she is keeping people like Ethan protected. She thanked me and said they NEVER get ANYONE that thanks them. She became more warm and friendly. 

We proceeded to find the issue of why I received the letter. Somehow we had two accounts. She deleted the one that was inactive.

One of the things I try to do is remember who I am talking to. I wrote it down. At the end of the call I said “thank you Mary, for helping us.” I like to use their name at the end of the call. I don’t know when or why I started doing this, but it just seems more personal to me. I was glad that I didn’t match her tone in the beginning of the phone call. Kindness is free.

It was a pain in the ass to make this call but I was happy that the issue was resolved. It took about 30 minutes but I managed to make dinner while I was talking to her (tonight was dialysis free 😀).

I was even able to walk with the dogs and get my heart pumping, and do some chores. It was a good day. I think Ethan plans on posting his video tomorrow.