2/5/26

 Sarah gifted me a fabulous coat for Jiminy. When he puts it on he becomes a PIMP/Drug dealer. He becomes a misfit of society. We were laughing as we talked for him different things maybe a pimp or drug dealer would say…but in a tiny little Jiminy voice.

I needed a laugh today because I received a letter yesterday saying that Ethan’s Medicaid has been discontinued. Of course the social services office is only open 9 am -2 pm. Those are better than bankers hours. To be fair, I am sure they work longer hours but they turn off the phones to do so.

 I had to scramble to rearrange some of my calls today to allot for the holding I anticipated doing.

I didn’t have the heart to tell Ethan about the letter yesterday on his birthday. Of course, his coverage ended 1/31/26 and he just had an echo and annual cardiac appointment. We have to get it situated quickly so that he can not have a lapse in his medications. 

The pharmacy said we can pay out of pocket, but we are not independently wealthy enough to afford that cost.

My cortisol level has spiked as I carry the burden of fixing this and then sharing it with Ethan who has mentioned in the past he would rather die than be a financial burden to us.

I started what I knew was going to be a long and frustrating process. I called the number listed on the cancellation letter. I waited on hold for 20 minutes. The person I spoke with referred me to a state Medicaid worker. 

I called that number and held for quite some time. They referred me to the county Medicaid office. I called that number, none of the prompts applied for what I needed, so I sat on hold for 30 minutes and that lady said she worked with managed care plans…which is what Ethan had cancelled. But I needed to speak with someone from case management. That was a different number.

 I called his “case manager” and had to leave a message. I only had a specific amount of time to deal with this due to my schedule today. Of course things spilled over and I was late to calls. 

I also placed calls to New York State of Health and Excellus to see what else can be done. 

I reached out to our cardiac team to see if they have any resources. I am waiting to hear back. I also sent an email to the county Medicaid office. We will see if there is any movement.

The message I left for the Medicaid lady was something like this:

“Hey my son’s Medicaid has been cancelled and he needs his rejection medication to stay alive. He is not able to afford it. Can someone call me back as soon as possible?” Was the gist of the message I left. 

We will find a way to get the medications and I verified with the pharmacy that we can pay out of pocket. I love the element of surprise the county has given us with this. And by “love” I mean loathe!

We may have gotten the communication a little sooner but the plow had MURDERED our mailbox and it hadn’t been fixed until Monday.

My stomach started to churn. Was I going to throw up? Maybe. I hate all of this. I was preoccupied all day and evening with the weight of the worry making the air thick.

I know it will work out and I have to trust that. It is just so frustrating. I also get pissed. Like super angry because none of these offices seem to care. We have put so much work into this kid. I am feeling like I have “Hell” on my shoulder laughing and taunting me.

Ethan is also struggling to work full time with his fatigue. He does it though. Even with Kidney Disease stage 3 B. This is what got him cancelled. Because he makes too much money per year at $18/hour. 

He has been set up to fail. How is he supposed to gain financial independence as a young adult? 

I was trying to focus on work this evening. Screw my Hell! I scheduled an appointment to donate blood on Saturday.  It makes me feel good and I wanted to let Hell know that it isn’t going to beat me! Ha! I can still move forward with kindness in my heart! Don’t pick a fight with me Hell.

I hope I can find out more tomorrow. Needless to say, I have been wearing my bird face all day! This is my bird face!