Ethan’s Journey

Ethan spent a lot of time working on his car today. Paul is struggling because he can see Ethan doing things that  Paul wouldn’t necessarily do, trying to fix it. Paul knows of a different way that Ethan could try. Ethan doesn’t want to hear anything from Paul and that leaves Paul completely frustrated. It’s easy for me to say “just ignore it” but I know it’s not that easy. We will continue juggling the ups and downs. So far 19 has been the hardest age to “parent”.

Friend therapy is the best. I had a relaxing day finally, puttering around to get things checked off my “to do” list. One thing on my list was to pick Paul up from work. He called me around 5:30 and asked me if I had forgotten. Of course I had forgotten. I felt like a jerk. I went and picked him up but it put him home a bit later than he wanted. At least he wasn’t mad about it. I spoke with one of the doctors at Columbia today. Apparently we were supposed to get special lab work done when we went on June 15 th. I didn’t get the lab request because it came under a nonspecific email, and I totally looked over it. I am hoping that we can just wait until July 13 th to have it done. I find out tomorrow. Another good day 😊.

I heard back from our insurance liaison. Our account has been put on hold again. Payments were sent but lost. Seems convenient.  She is helping navigate the collections accounts. Hopefully that will be put on hold as well.  I am currently trying to connect to a financial planner at the hospital to navigate the Medicare nightmare and help me figure out what it means to file some grievances. I am so thankful I am not working tomorrow. I am looking forward to time with one of my bestie’s. I haven’t seen her in so long. ❤️

What is the deal with Medicare? I feel so stupid trying to navigate the 37 page SUMMARY. Summary…AKA   the short version I would hate to see that LONG version of this.  The newest claim is we owe a few thousand dollars for services that I was under the impression we’re covered. I think I am officially traumatized by these bills, the collections agency harassing me weekly to biweekly and the hospital calling for my balance due. When is this going to stop? I don’t see an end in sight. I reached out to my transplant team for guidance on what to do from here. It looks like I need more supporting documents along with filing two different appeals cases. I am so frustrated. Then to top it off I got 4 bills from the hospital almost totaling $10,000. I know I don’t owe that, but it gets very frustrating working my butt off, Paul working his butt off and then get slapped in the face with these bills. I just feel like I am walking up a muddy mountain with slippery shoes on being chased by a kille

 Today was hotter than satan’s armpit. We really couldn’t do much outside due to the humid, HOT weather. Paul and I decided it was the perfect day to launch the jet ski’s to see how they worked. Paul had done some work on them and was anxious to see if they ran smooth. We did about a 30 mile ride. It took about an hour and a half. We launched at Braddock’s Bay Marina and drove down to Irondequoit Bay, went under the big bridge and came back. We then ate lunch at a little bar on Braddock’s Bay. The food was delicious. Ethan made it home around 2:00 today. He slept in his car, as planned, last night. He wasn’t in much of a talking mood but I think he had fun. I was tired from our ride so I took a nap. When I woke up, Ethan was napping. It was that kind of a day. We ended up going to a friends house in the evening. It was great friend therapy. All in all, it was a great day.

Today much was accomplished. When we finished visited with Brian and Kristen, then the work began in the yard. I haven’t had the drive to tackle it, but today I had the drive and went with it. I was like a plow horse, just kept going. Avery had a pool party to go to. She was quite excited. I was excited for her to start her summer before senior year with a pool party with her friends. The weather was perfect for it. When we got home, Ethan shared that he was going to go to Erie Speedway for a drift event. It is in Pennsylvania. He was taking the Supra and driving it with his friend who was driving her own car and picking up more people in their cars in Buffalo. I am so happy he is going out and about. I am glad he had the opportunity to do so and he chose to do it. He was not sure if he was coming home tonight or tomorrow. He took his Saturday night and Sunday morning pills just in case he spends the night somewhere. I think back to when I was 19 and I moved to Georgia with Paul, so a

Today was good. I think I did ok staying positive. A friend made my day today and shared a “new to me” sparkling water flavor called “Strawberry Margarita”. It didn’t have tequila in it, but man, that tasted good. Now I am going to have to buy up all the stores stock to make sure I have it year round.❤️ This afternoon Avery, Paul and myself went to Buffalo to visit my brother and his wife. Ethan stayed home on dog duty. We had pizza on the back deck and then had a campfire. We had some good chatting and visiting around the fire. I appreciate Brian and Kristen living so close. For a long time, they lived far away, so this is a blessing. It was fun chatting about how we grew up and how it was different from Kristen and Paul’s upbringing. I think Avery enjoyed it too. Avery almost didn’t come, but I am glad she did.