Wednesday, September 23, 2015

Triage in the face of Pain and Uncertainty

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In preparation to determine the "next steps" for my recovery, like starting to bear weight through my leg to see if it is doing ok and help it build bone, I sent my notes to my doctor in Chicago, including mark ups of my X-rays to check in on my concerns following this latest surgery.

Even after  doing this so many times, there are times I get overwhelmed by the complexity, primitiveness of my remedies, and multiple body parts that keep getting involved and increasingly compete. Sometimes, I spontaneously burst into tears.  I get confused and frustrated as to which joint I am primarily concerned with at that moment. It is all a rotating circle of hell at times. In the last 12 months I have had 3 significant ortho surgeries on three different body parts, and have an impending eye surgery (4th body part) in a couple months. New, non-ortho related diagnoses this year have been wrecking havoc on my medical project manager ability.

I have to remember that the hip surgery is my most important, has the biggest risk and implication for my long term functionality, and most problematic.  If there are problems everything else will be tossed and we will focus on hip.  I certainly hope not. I look at that Xray and cringe and wonder ... how is this going to work? Forget the picture, it is also, how it feels, the pain, and strange crunching sounds that concern me.

 Working with a new remote team has added to the stress level – it adds time, new communication challenges, and stretches the patience. I have forgotten what it is like to start afresh and mostly afar with a team I have no track record with. I have worked with the Steadman Clinic since 2000, (yikes, that is 15 years) and know the staff, their various protocols, and where I can push the envelope. No track record leaves me "stress testing" the system for what works and doesn't work, and what can bend or not.  My coordination with a local Dr fell flat. (He really didn't want to get involved and I wasn't the most aggressive cheer leader).  I have forgotten how long it takes to build a new relationship.

While I am working on moving the hip forward I am starting to wrap my head around my impending eye surgery to remove the pterygium on my cornea with a graft from an unseen location of my cornea. And I am setting up the allergy testing to dental cement to finalize the one year tooth saga. This is due to the extreme reaction I had to dental cement while they were finalizing a crown taking care of my extreme allergy reactions to dental cement, and managing my other joints. All this is being done before we loose our medical insurance at the end of November. Hence the rapid pace at which I am working.

And, these are the times when things get heady and I want to curl up in a fetal position and cry...

 All I can do is keep at it and inch this ball forward and see where we end up. What I do know, in the back of my head is that perseverance is a mind set and you just have to plug through...I cannot let my fears get the best of me...and I have assume that things are going to work out.

Wednesday, September 2, 2015

On Death With the Eminent Dr Sacks

Isle of the Dead | Arnold Böcklin
Dr Sack's, eminent humanist and beloved neurologist died last Sunday. He made the world of medicine accessible to the lay people and brought insight into the struggle of being human. I came across this article about his perspective on death in Flavorwire digital newsletter, that I thought I would share.

Here are some of my favorite quotes, the first being top, from the article that lead me to his recent essays on death
  • Americans’ relationship to death has often struck me as being an extension of our puritan attitudes about sex  ... yet many Americans could care less about the deaths of oppressed people at the hands of the state, or from neglect.
  • “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need,” 
  • Rather than the kind of palliative care that would allow the dying to sum up their lives and say goodbye, Gawande chronicles how we often opt for invasive treatment that could prolong life, but so often doesn’t.
I do feel our society has a tricky relationship with death and aging. We can barely talk/tackle other social issues like race or poverty so, sadly, it is no surprise. I think talking about death is important to discuss openly, especially with loved ones. It is a natural part of our life process and it seems so often people are not prepared for.

 Here are Dr Sack's thoughts when he was initially diagnosed, followed by The Periodic Table and The Sabbath.

In typical enthusiasm Dr Sack's last tweet

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