Connect to my post on Totally Buffalo “If you could live forever… would you want to?”:
Last weekend, Frankie took a hit in his last hockey game of the season. I watched his teammates huddle around him, probably so he wouldn’t go after the kid and get suspended or something. It wasn’t necessary because I think it will be a long time before he finds himself in that situation again.
A few minutes later, he skated off the ice. He never does that voluntarily so I knew something was up. His coach told me later that he took that hit to his head and was feeling dizzy, so he removed himself from the ice.
Of course, Frankie said it was no big deal and he didn’t need any followup. The problem is, I’ve been following Dr. Daniel Amen online (see my spect imaging blog) and know just enough to make me dangerous. Head injuries are nothing to mess around with. At the same time, I don’t want to over react either.
I sought out a professional opinion and received the name of a pediatric neurologist. After spending a few days playing phone tag, I spoke to a nurse who wouldn’t say one word to me other than he needs to be a patient before they will talk to me. I get in the age of law suits that docs have to protect themselves. And I get that it’s generally bad practice to say too much without seeing a patient. What I was looking for was general information and protocol. I expected something like, “Well, you know of course it is best to come and be seen personally by the doctor. We think that any time there is a hit to the head, no matter how big or small, it should be followed up with an x-ray.” Or “You know of course it is best to come and be seen personally by the doctor. Generally though, if there are no symptoms such as throwing up or blurry vision, there is no need for an x-ray.” Docs and nurses give that kind of advice all the time. Every time my dad is released from the hospital they say, “Call us if he spikes a fever or vomits.” Is that any different?
I emailed back the first physician and got back a curt reply. I realize that I offended him which I certainly wasn’t trying to do. He said that a doc shouldn’t say anything without a personal evaluation (which I wasn’t asking for specifically, just for some direction about how to know what signs to look for if further followup is needed). He also said that is how law suits happen (which I know would be awful, but then it supports by original complaint, it comes down to money now most of the time).
He also said that I could find generic information online. I thought docs usually hate when patients do that. I wasn’t trying to be lazy. I actually asked the nurse if she could tell me any sources of information that are credible and reliable. She wouldn’t answer that either. His last comment was that this doctor was ethical. I wouldn’t know. I couldn’t talk to him, only his nursing staff.
I don’t want to be a cynic. I don’t want to be part of the problem. But how do you not end up feeling like in the end, it feels more like it’s about getting to bill us for a patient appointment? And for a specialist like that, I’m sure it would require a referral and more extra steps. I just want to be a good mom. Not over reacting, not under reacting.
I will do my own research, but I stand by my reaction. I’m very disappointed in the response I got. There are ways to give out good information and still cover your ass, but I guess you would have to want to.
Last week I went to see Jesus Christ Superstar. I couldn’t believe it took me 51 years to see it given my love for faith and music. Then it occurred to me that I may have needed to wait until now to appreciate the big picture of the message. In my earlier years, I would have been picking it apart with my fundamentalist mind.
I have to say I was riveted from the second it started to the second it ended. My entire being was flushed with goosebumps from the music and from the poignant message that seemed to come from every word, note and facial expression. At the end of it I was shocked. I thought it would be the Resurrection, accompanied by a “Jesus Christ Superstar” reprise. Instead, I was left with the crucifixion and a blood stained cross. It is a Good Friday message, not an Easter message.
Once again, I found myself in a session this week with a client that dove-tailed with my own life lessons I am navigating through. He was talking about a well-done sermon he had heard in church about the story of Mary and Martha. Martha was the busy one in the kitchen while Mary sat at the feet of Jesus. Martha eventually gets pissed off and asks Jesus why He doesn’t confront Mary for not helping with the work. He tries to explain that she has chosen the greater gift.
I’m a Martha by nature. I get it. I have tried very hard to consciously balance my Mary moments in life. His story reminded me of one of the scenes in Jesus Christ Superstar. Turns out it is one of his favorite shows as well, though he hasn’t re-visited it in many years. In the show, they depict the biblical story of Mary Magdalene coming to anoint Jesus’ feet with very expensive oil. Judas is furious. Do you know how many poor people you can feed with that kind of money? I get it. I would have had the same thought. Jesus again tries to explain the greater good.
Martha is doing good, responsible things. And worrying about being a good steward of your resources and helping the poor is also good. In fact, I would say they are both very Christian in their motivations. Yet somehow, there is this bigger picture that needs to be brought into balance.
I have to make myself stop when I have an opportunity to be with my grandkids. Every few hours I have to jump up and do some tasks that get the better of me, but I try to remember those relationships are the most important things.
My client totally got the connection I was making. We agreed that the message is the same in both of the biblical stories. We had a great few moments connecting in our own therapeutic relationship. There were even a couple of spots that approached emotional tears at the sacredness of what we were both growing in appreciation of. And once again, I probably got as much or more out of session than my client did.
So my thanks to the A.R.T. theater in Buffalo and all of its actors for using their talents to show an incredibly complex and moving rendition of the greatest love story ever told. Thanks to my client for sharing your life and insights with me. And of course, God is the at the center, the very breath that makes any connection to beauty or other humans possible and meaningful.
Grateful for these things as we approach Easter.
My latest contribution to Totally Buffalo. Please clink on the link.
As I continue to pursue my next career step, I was advised to read a few books. I just finished “Being Mortal” by Atul Gawande which I loved every minute of. I felt validated with a lot of the beliefs I’ve come to in this work, and I learned some new things where I am trying to make adjustments in my thought process as I try to assist others.
Now I am reading “An American Sickness” by Elisabeth Rosenthal. It is also validating, but it comes with extreme frustration. Almost every paragraph I read makes me angry all over again, learning about the things that happen in our medical system across our country. Things that I have suspected and felt, but now know there is plenty of fact to back it up.
The kicker was reading about Medicare and the observation status problem for patients. It was exactly what happened with my father before Thanksgiving. I blogged about it and the madness of trying to get his care covered by insurance. The last paragraph of that chapter informed me of a law that Obama passed in 2015. Had I known about it, I would have kicked that hospital’s ass. They were definitely not even close to compliant, but were very clear what they would NOT do to help us because of their strict compliance to law. I mean, I do a pretty good job fighting for my dad, but if I keep learning more information, I really feel sorry for these folks in the future. Education is power!
I have mentioned several times in blogs and my books how much I respect my doctor. She is incredibly knowledgeable and very thorough. She truly cares about me and my family. But sometimes I have run ins with the staff, which unfortunately makes the same systematic mistakes that most health systems do.
This last week was very frustrating and maddening. Hell, I was ridiculously pissed off. When you are sick and scared, the last thing you need is to have unnecessary conflict with your medical team. I was told over four days, by three different health professionals on the phone that I definitely had the respiratory flu. I was prescribed antibiotics, told by another to throw them out, then told that the second doctor shouldn’t have had me throw them out. By day four, I wasn’t any better with any of the medications I was taking, prescribed or otherwise.
In spite of being treated like an over-reactive hypochondriac, I called back yet again. I was finally sent to get a chest x-ray, which was the first time I had any kind of medical person actually see me. Pneumonia. Crap. Now they don’t know if I had the flu and it caused pneumonia, or I just had pneumonia all along. And it is too late to be swabbed now so I will never know. It’s important though because the contagion and treatment are very different for the two conditions.
I am going in tomorrow, a week after I first called to see the doc, just to make sure things are going in the right direction. I was able to talk to my favorite nurse today and she explained a lot to me. She explained that people tend to say that everyone gets pneumonia now but that it is indeed life threatening. I probably won’t fully recover for six months. And I absolutely have to sleep and rest and take it easy. (None of this was told to me before now.)
That’s always hard for me. My life requires a lot of time commitment and energy. If I don’t feel well, it is easier for me to hold back. But when I feel ok, it is difficult for me to remember that I am not fully recovered and I still need to take it easy. The steroid phase is really a factor as well. I remember vividly from Tim that steroids treat symptoms but not the disease. Tim looked great and worked but he was literally a few weeks away from death.
My poor dog doesn’t understand why she doesn’t get her long walks. And I have to just keep telling myself to slow down, rest, expect less of myself, etc.. I will feel better though after having the doc actually see me in person tomorrow as well.
Always try to educate yourself as the consumer. Unfortunately, even at the best of places, you still have to fight and advocate for yourself or your loved one. Your life could literally depend on it.
notes & essays on daily life with terminal cancer
to find Patti Singleton these days.
The life of a writer and survivor of loss.
Inspiration for meeting life's challenges.
Bitter & Sweet, living daily with grief
The latest news on WordPress.com and the WordPress community.