Hello once again!
As the title implies, this post is about priorities and listening so they can be placed properly. I have been quite depressed as of late. My lupus is really ugly right now. I am having major issues with my gi tract from top to bottom. I am dealing with drama within my family. I am back on prednisone. Basically, I cannot eat well, cannot sleep well, and am a round moon face sicko.
I had a bright spot yesterday I thought. My rheumatologist wants me to start Benlysta infusions. I was in the drug trial with real drug and it helped me a lot. Once it was approved though, the drug trial ended. So, he wants to do these infusions to try for remission. Remission is a word I have not heard for years!
Back to the story. My rheumy’s nurse called and said she had done the legwork and for me, my insurance would only cover these at an 80/20 ratio. In other words they would pay 80% and I would pay 20%. Ok, what does that mean? It means it is cost prohibitive for me. However, she next tells me that my 20% equals $250 per transfusion. Still cost prohibitive for me. Now she tells me that there is this gateway program that will pay for the med itself. So, I only have to pay the office visit ($40) to begin infusions and as for the $250, I can be billed and pay as I can! Wow! That is great news! Finally it is looking like I might get some type of relief from this all pervasive pain!
So, I decided to share this good news with my husband. I didn’t even finish the details before he exploded and told me that there is no way we can afford this! He also told me to cancel finding out about any thing else related to this! He told me I was wrong to even consider it. Seriously! He said it would be another bill and that we cannot take this on.
He stormed out into his garage room. I was numb. I really was in pain emotionally now. I thought why try anymore? You know, if I had cancer would he do the same thing about a med? Is he really so self centered and blind that he cannot see or comprehend how insensitive he was? The answer, sadly, is yes. I saw a new side of him yesterday. It is a powerful revelation.
I have been here to help him overcome HIS issues and done whatever was necessary to make sure he gets care he needs. You know, the Golden Rule. I saw yesterday that no matter how much I give he will only take. He truly does not seem to care about any of my issues at all. He went so far today to say he didn’t want to hear anything about my call to another doctor regarding a different issue. Guess I know where I stand.
A friend of his passed away yesterday afternoon. (This was after our conversation above had occurred). Now today, he told me his friend isn’t having s funeral. His wishes were to be cremated and his wife was to hold a sort of wake. My husband, the recovering alcoholic, told me he was going and would have a drink for his friend! Wow! It is almost like he was waiting for an opportunity to drink. He assured me he was going to stay sober but only have that one drink. Uh huh, right. He might delude himself but I have seen this behavior before. I tried to reason with him about slippery slopes and how he was all but dead himself a month ago. He refuses to listen. Well, I tried.
I came back here with assurances of sobriety and caring for my well being. Bait and switch. Jokes on me. Bad day. Sorry to bring anyone down but this is my reality right now. I will survive. I will have to go on chemotherapy if Benlysta is off the table. Oh well, I actually want to live so we will see how this plays out. I am just so sad to see and hear how my issues do not matter to him. Actions speak louder than words so if his words match his actions then I am alone on this painful island. Well crap.