Thursday, March 13, 2025Tonight's picture was taken in March of 2009. Do you think that some people can attract others just by their sheer presence in the world? Mattie was that kind of person. His energy, spirit, and personality were contagious and this was not an atypical day in his SMALL hospital room. The fellow sitting on Mattie's bed is Brandon. Brandon and Mattie were diagnosed with cancer around the same time. Though Brandon completed treatment by that point in time, he would come back to the pediatric unit often to visit Mattie. Mind you Brandon did not live close to the hospital, he was at least an hour away! Though Mattie and Brandon had a 12 year difference between them, they understood one another, and Brandon was an amazing friend to Mattie. In fact, on the day that Mattie died, Brandon came to the hospital and sat with us. We had an impromptu wake (if you will) in Mattie's hospital room, and Brandon was there with us the whole time (keep in mind that Mattie had died, but he was lying peacefully in his hospital bed while we surrounded him in a circle).
Back to the photo, on the floor, next to the door, is Meg. Meg was a child life intern. Meg and Mattie were like two peas in a pod. Meg knew how to inspire Mattie, and she became his physical therapy buddy during sessions. She was the only one who could motivate Mattie to walk and do races in the hallway. He loved competing against Meg and she did a great job hamming it up. I will never forget Meg, or Mary. Mary was sitting in the chair, opposite Mattie. Mary was a child life volunteer, who wanted to go to medical school. She was a bright bulb, had wonderful energy, and was one of the few volunteers Mattie allowed in his room. To this day, I wonder what happened to Mary, and I wonder if Brandon, Meg, and Mary know that their presence in our life mattered and made a huge difference to our day to day existence.
Quote of the day: Someone who has experienced trauma also has gifts to offer all of us - in their depth, their knowledge of our universal vulnerability, and their experience of the power of compassion. ~ Sharon Salzberg
I truly wonder why some people enter the medical profession. My saga with getting access to Prolia continues from yesterday. I have so much going on, that I would love a doctor and her office to actually advocate for me and have my best interest at heart. What I have concluded is I need to find another doctor to support my bone density issues.
In the last 24 hours, this is what I have experienced at my doctor's office:
- I was told I couldn't receive Prolia anymore because my health insurer won't pay for it.
- My doctor's office was ready to prescribe me Reclast. Another shot but it is a bisphosphonate. NOTE, I am allergic to bisphosphonates. Fortunately I know this!!!
- When I refused Reclast, I was then offered two other injectables. Both have a safety warning associated with them, as osteosarcoma developed in some rats during testing.
- My health insurer wants answers to certain questions. The doctor's office will not respond to this request.
Truly what I am dealing with is mind numbing, incompetence, and a setting off many ethical red flags. It is very clear I am allergic to bisphosphonates, so why prescribe me one through an infusion? It is a total disregard for me as a patient. Read my chart, look at my history. What if I wasn't keeping track of my own health, and what if I couldn't advocate for myself? I worry about other patients on a daily basis who are fighting this system alone!
In a nutshell, my doctor's office called me today to follow up. The nurse argued with me, saying that she administered my shots to me last year in the office, and billed this drug as a pharmaceutical benefit with my health insurer. Here's the problem with this.... I haven't received the Prolia shot in my doctor's office since 2023. All of last year, I went to an infusion center instead. A center that my doctor's office recommended and to add insult to injury, this same nurse sent my scripts to this infusion center in 2024. SO HOW ON EARTH DID THIS NURSE NOT KNOW THIS? She was the one filling out the script and sending it to the infusion center. Even if she did not remember because she cares for many patients, shouldn't this information be in my chart? I am now wondering if she is working with a full deck. As of today she is now sending a new script to the infusion center, which bills this drug as a medical benefit to my health insurer. Let's see what happens now. All I know is that this nurse refuses to submit an appeal letter to my health insurer, answering the questions asked by the insurer. Needless to say it has been an infuriating process and getting access to medication shouldn't be this difficult.
Later this afternoon, I took my parents out to lunch. While at lunch, I had my eye on a man who was acting in an unusual manner. He was walking around the restaurant taking photos of spaces and even videoing the food, the drinks, and went up the coffee area and examined the bag of coffee beans. He took the bag with him. At one point, he came over to my table and started talking to us. He could hold a conversation, but had very grandiose ideas.... such as he was friends with the Russian President and told me he is a great pianist. He was all over the place, some of what he was saying was based in reality. In any case, as he kept on talking he was looking to pick a fight with me. NOPE, not going there. I learned early on when faced with someone with a delusion, you DO NOT confront or challenge the delusion. Instead, you listen and empathize. After which, he then moved along and left the restaurant.
I have no judgment what so ever about this man. What I do know however, is we live in complicated times, where so many of us are faced with instability in our lives, financial insecurities, losses, betrayals, and trauma. Under the right circumstances, any of us could be faced with a mental health crisis, and yet the power to listen, to allow someone to feel heard, and to show compassion to others is something we can freely do, it is the power of being human. Something that we need to remind ourselves daily, because how we react and treat one another matters and has mental health consequences.
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