Joining the Walking Gallery of Healthcare

I’m on my way to Cinderblocks, the 5th annual patient-led gathering of The Walking Gallery of Healthcare, founded by Regina Holliday. Regina truly wears more hats than I can even imagine, and yet whenever I’ve seen her photo, she’s upright and smiling and in motion. I’m eager to meet her today, as one of the newest members of the walking gallery.

I painted my jacket, which bears these words from Dante: I found myself alone in a dark wood. 

That has been my experience of life as a person with several chronic pain problems. I am trying still to see my way out, or at least to see the beauty in bare trees and green tops, or in whichever season I happen to be. I’ll be giving a short talk tomorrow about my experience with pain, opioids, and the so-called crisis, including how the CDC changed the way it counts the numbers and so told the wrong story about what is killing so many people in our communities and homes.

For the start of my talk, I decided to write a very, very short poem. See below, and hope to see you there.

When they said  I’d have to learn to live with it (just take some Bufferens)

Are you kidding me?

Disbelief

Helpless.

Anguish.

Isolation.

You must not know what you’re talking about.

Hysterical.

Lost.

Stressed.

Hopeless.

Shame.

Stigma.

I’ll just call Dr. Google.

Aggression.

Depression.

Determination.

Frustration

Aggravation.

Someone Make This Stop.

 

TAGS: Pain, burning mouth syndrome, The Walking Gallery, Regina Holliday, Cinderblocks5, Advocacy, Patient Advocate, Opioids, CDC, Centers for Disease Control, Heroin

Chronic Pain: Living What I Did Not Know

On March 13, 2013, a needle stab or two during oral surgery triggered chronic neuropathic pain, which involves my entire mouth and, on its worst days, my lips, nose, and palate. It is called burning mouth syndrome, a misery I would wish on no one.

I’ve spent the years since then trying to cope with life as a person with chronic pain, trying every medication and complementary treatment my doctor and specialists recommended. As Dr. Victor Montori told me–before I myself became a patient–patients have to complete many tasks, and work to regain health. Doctors must consider what else patients have to achieve while conducting the work of being ill.

Nothing ever really helps–or what sometimes helps causes short-term memory loss–and I’ve been forced to adapt to living with a condition that has upended my life. I’ve also developed several autoimmune diseases, which come and go and flare and vanish, a perplexing mix of symptoms and treatments.

Much irony in this, learning to live with multiple chronic conditions as I age. It’s a topic I’ve written about for many years, especially when writing about how to help frail elders and their caregivers. The issues sometimes seemed intractable, and the solutions often appeared to be simple.

I have since learned how tough all of it can be. In December, I agreed to participate in a new patient-centered medical home (PCMH) project. I signed on with relief, for I could no longer manage the dozen or so medications prescribed by seven different providers–none of whom interacted with the others! Even now, when a clinical pharmacist finally completed her review of my medications, with an eye for spotting any that might be discontinued, I have yet to see her recommendations.

It is not that I have not asked–but that her recommendations were apparently faxed to my primary care provider, who then faxed them to my care coordinator, who concluded that I should not see them until my next appointment with the PCP. Meanwhile, agitated specialists have called me to warn that someone has been calling them to suggest changes to my medications!

Whew! Health information technology (HIT)? Not there–the area’s clinicians have chosen HIT vendors whose programs suit the practice’s needs. This means that they might not connect with the records stored by other clinicians, or the hospital, or the diagnostic tests. I am still responsible for trying to convey the complexity of it all to each clinician, and hope that the independent pharmacist who fills some prescriptions (other than those required by my medical insurance to be called in for maintenance supplies) spots potential adverse effects or interactions.

When I voiced these concerns to my care manager, she noted, “Well, you are a highly educated person who is knowledgeable about what should happen. This [program] is still a work in progress, and it will require many tweaks.”

Tweaks? I’m tweaked! What about those whose health literacy is less sophisticated? I’ve found my own sophistication to be no match for the alternatives clinicians suggest to me. Often, I guess–do I like the sound of the medication? Have I seen it on direct-to-consumer ads? Have I tried it before? What do others think of it?

It seems a foolish and expensive way to make such critical healthcare decisions, yet off I go on this road less travelled. Please take some time to follow me for a while, as I chronicle the next few months–and the work I accomplish.

 

Key Words: chronic pain, pain, autoimmune disorders, care coordination, patient-centered, health literacy