7/10

I worked today. I do love vacation, but if I was on vacation all the time, I wouldn’t find it as joyful. Who am I kidding…yes I would ha ha.

I got a call from the doctor’s office stating that one of the medications Ethan needed a refill on, would require an exam prior to refill. I have about 7 days worth of medication left. The lady’s voice was very nasally and snotty and most certainly unlikable. (Actually it wasn’t at all, she was very kind with a normal and pleasant voice, but I wanted to not like her so in my recollection I decided to have her sound nasally and snotty….don’t judge…. it’s a coping skill.)

“We can’t refill the medication without an exam. How many pills do you have left?” She asked

“Ok….I have about 7 pills left. 7 days worth.” I said.

“ ok….let me see when our next appointment is…..” as she is looking I am going over my work and other appointments that we have scheduled for the week, I was trying to figure out how to shimmy another appointment in this week.

“Any chance we can get a telemedicine/zoom appointment?” I asked. This would totally make my life easier as well as Ethan’s.

 “We are unable to schedule these types of appointments via zoom because the insurance company isn’t paying for those anymore.” 

 WHAT????? Well this is inconvenient. I may have pouted a little. I certainly made a bad face that luckily this woman didn’t see.

This is a medication for anxiety. Ethan has anxiety. I wonder why? (sarcasm). Fine…whatever…I will take time off so that they can listen to his heart, check his weight and height. (Cause that hasn’t been done a million times in the last 9 months). 

“What are some days and times you have available?” I asked.

“August 18th is the first available.” she said.

I took a cleansing pause. “August 18 th?” I repeated. What the heck? We have to wait that long??????

“What time?” I asked. She gave me a time and I took it.

“ so because I made this appointment, he will get his medication refilled right?”

“No”

I took a deep breath. “So what I am hearing you say, is that you will not refill his anxiety medication until his appointment? And he will have to go without it?” This is the dumbest policy ever I wanted to add. 

“That’s correct.” She said.

“Oh wait” she said, “I can send over a refill for enough medication to get you through until that appointment.”

I started laughing. “Thank god, because I was going to ask if you could give ME anxiety medication to process all of this information. Because I was ready to puke.”

When I got home from work I did a quick bulldozing of a sandwich and prepared for dialysis. Ethan was feeling frustrated. He is sick of feeling tired ALL the time. He feels like he has little energy and is not enjoying one moment of it. He has to miss out on fun things because he is not feeling up to it. He is slowly losing his joy and feeling like “dialysis’s bitch”. 

We talked about how his hell was trying to get the best of him. He also is terrified by the thought of another transplant.

He has stuff he wants to do. He tires easily. He naps more than he ever has. We will discuss with his nephrologist and hopefully we can safely fine tune his treatments.

We also got the green light from the transplant team to schedule the COVID vaccine for Ethan. It was a bit terrifying filling out the questions. “Have you ever had vaccine reactions in the past?” Yes in fact he has. Last fall. So hopefully it will go smoothly. I will be holding my breath for sure.

After dialysis, ethan and Avery wanted to go to the pet store to beef up their fish tanks. They asked an associate to help them and she was holding a snake. She was trying to juggle the snake and getting the fish. I asked her is she needed help holding the snake. This cute little being was sweet. I showed him the fish and he looked at them. It was great enrichment for this snake. It was a bright spot for me.