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Note from Elaine: ELISE ROSENHAUPT and I became friends through the “Homegrown Authors” table at Santa Fe’s Farmers Market. In talking, we concluded that “adoption” has many meanings. Elise’s guest post will be of great interest to anyone who’s cared for others, not necessarily in an official capacity, but as a compassionate human being. If you’ve ever helped someone who’s dealing with an a hospital hierarchy, you will relate to Elise’s story.

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In my book, Climbing Back: A Family’s Journey through Brain Injury, I write “there should always be two people with a patient – one for company and love, and a second as the patient’s advocate.”

In a clinical situation, having a friend as advocate makes a difference.

In a clinical situation, having a friend as advocate makes all the difference.

 

This story starts with a letter from a mutual friend:

Tracie has been very sick for the past several months . . . .  (dizzy, fatigued, slow speech, forgetfulness, and more). For the past 6 months or so she has been shunted from one incompetent-sounding doctor to the next with still no proper diagnosis or plan of treatment! . . . . you could be a temporary advocate.

 

What follows is a summary of what happened next.

 

At our first visit to the University of New Mexico Neurosciences Center, the physician who came in was a neurosurgeon, not the neurologist she wanted to see.

 

“You need your doctor to refer you to a neurologist,” he said. I asked the doctor to write the referral then and there.
“Now we can go down the hall and make the appointment with a neurologist,” I said.

The technician who’d emailed the referral said, “They won’t see it for a few days. Call at the end of the week.”

Tracie was ready to give up and go home.

 

I asked, “Can you print it out so we can hand carry it?”
When the scheduler gave Tracie an appointment for May 16, five weeks later, Tracie was thrilled – five weeks was sooner than her previous waits for appointments. I thought it was too long to wait.

 

May 16, I wandered the Neurosciences Center’s maze of hallways forays to find out if we’d been forgotten, during the three hours we waited, in our windowless room. The neurologist finally arrived. He thought of two likely explanations for Tracie’s troubles. He ordered an LP (lumbar puncture, or spinal tap) to learn more.

 

On July 11, the morning for Tracie’s LP, I was not allowed to accompany Tracie when they took her in for the LP, a “sterile procedure.”

 

But there had been a “mix-up” and the doctor who was to conduct the spinal tap had “gone home.” Another doctor disagreed with the first neurologist’s thoughts about the causes of Tracie’s problems. He didn’t think a spinal tap was a good idea, and wanted to explore some other possibilities.

 

When I learned this, I asked to be allowed in with Tracie.

 

“Do you have her power of attorney?” the gatekeeper asked. I didn’t, and was told once more to sit in the waiting room. Tracie was on her own.

 

The new doctor thought that Tracie was suffering from migraines. Tracie told me:

 

His recommendation was, right now, some shots which were a mixture of steroids and a numbing medication . . . .. 

Oh, my gosh, that was wicked. . . . [It was] like when you get your teeth pulled – the shot goes in, and then they move it around and shoot a little of the medicine in at a time. About three different places on each side of the base of my skull, one syringe for each side. . . .

 

We still don’t know whether Tracie was indeed suffering from migraines, or if it’s something else. I’ve learned how hard it is to be an advocate – respecting Tracie’s more forgiving temperament while having a sense of urgency on her behalf, wanting to ask more questions and to demand more responsiveness from the medical establishment.

 

I didn’t have her power of attorney! I wonder, can I adopt her, make her my sister or my daughter, so I can stay beside her through the medical maze.

 

You can read the fuller story, or watch for the updates, on my blog (see website below).

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Elise Rosenhaupt, author of the recently published memoir Climbing Back: A Family’s Journey through Brain Injury, blogs about her experiences as a patient’s advocate on her website, http://www.ClimbingBackMemoir.com. A graduate of Radcliffe and Harvard, Rosenhaupt has lived in Santa Fe, New Mexico, since 1969.photo

 

Elise Rosenhaupt

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Join me on Mondays for reflections on adoption, hiking and life. My newest book, Santa Fe on Foot-Edition 4, is due out this Fall. -E. PinkertonSFOF cover twitter jpg

 

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