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6/2/25

 Another day, another appointment for Ethan. Today was SSI. He is working full time and providing all the things he needs to. He is able to qualify due to his wage and chronic illness. He needs the SSI to qualify for Medicaid. I still don’t totally understand how it is all connected. 

This is the call we waited for last week and never happened. I drove across town, had to make up time missed from work, Ethan had to coordinate with his boss so he can leave to take these calls. I am thankful his company allows him to do this. 

We try to be very thoughtful of his position and keep him at work as much as possible. But sometimes he has 5 appointments a week.

These calls are linked to my phone number (which is why I was present) because Ethan doesn’t always check his voicemail, he works during their business hours and it is so loud at his work, he can’t hear his phone.

We have a good little system. I arrive, wait for the call, text him to come out and we go from there.

I never would have guessed 5 years ago how Ethan’s heart condition would evolve and snowball into so many appointments and many teams that work with us to continue to move forward.

At 2:30, my phone rang. I answered and immediately texted Ethan. He texted me back to let me know he was on his way out.

I told the lady he was on his way and that Ethan was at work. 

“Did you want to reschedule?” She asked.

In my head I thought NO WAY!!!! 

“I did try to reschedule the first appointment initially, but was told these appointments were booked 3 months out and there were no available slots left. If we didn’t make the appointment, we would lose benefits.”

“Hmmmmm…that doesn’t seem right.” She said

I didn’t just make that up. 

“I called twice last week to see why we didn’t get a call and get an appointment.”

“Oh yeah, I was out sick last week. They also changed all of our extensions.”  How convenient. If we don’t answer, we can lose benefits. If she doesn’t answer…there are no consequences.

I noted there was no apology for wasting two hours of our time. 

When I am out sick from work, I either have to have someone on my team make my calls, or reschedule. I have done this being deathly ill. Apparently other people’s time is not a priority in this office.  They just didn’t make any of the calls that day. I was feeling salty about it. What kind of hog wash is that?

Ethan was still making his way out of the building. 

“Well if he isn’t there yet, I will call back later.”

Ummmm….no! Nope! No thank you! I am not doing this a third time. Where the heck was Ethan?

I went into stall mode. I started asking her questions trying to buy us time. I slowed down my speech…to hopefully just keep her on the phone long enough. Luckily Ethan surfaced from the bowels of the building. Phew.

She asked him all the regular questions about his assets, what he owns, his income, his bills,  etc. we were trying to be as nice as possible. That is someone you don’t want to piss off.

She said she would make a determination and we would receive a letter in the mail about it. We still have to do this meeting with the medical evaluation team.

Ethan did great on the call. I am hoping that they take into consideration that I was present for this call, showing we support him in all the ways we possibly can.

Afterward, I left and Ethan went back inside.

We will hold our breath until the results come back. 

Afterwork, I did some more meal prep. I made 10 more meals  for lunches and dinners. 

I also was feeling up to doing some gardening. I decided to push my luck a little with the back. I will let you know how that goes tomorrow. I am hoping that my strength in my back was strong enough to handle it.

Our pileated woodpecker was back today. He was really pecking away at the old dead tree stump.








Comments

  1. You have the patience of a saint! Ethen is learning how to forge his own way through this mess as well. Good for him.

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