Why Sick People Neglect Their Healthcare

Have you ever seen the training videos for retail workers about the dangers of repetitive motion injuries? They came to mind the other day after a recent experience switching medications to treat my ankylosing spondylitis.

Managing ankylosing spondylitis – or any chronic disease – is like the momentum of a repetitive motion injury, but worse. Chronic diseases come with a slightly different package. With enough rest and care, a repetitive motion injury can heal and go away, but chronic (read: always there) diseases have no cure.

For example:

To get a new specialty prescription I must call my doctor, health insurance company, drug manufacturing company, and pharmacy multiple times over several days (or weeks) to finally get the medication in hand. Often guesswork determines who to call next because as a patient I don’t know where the process has stalled. It feels a bit ironic for me to be the last to know. I hear things like this on the phone: Continue reading Why Sick People Neglect Their Healthcare

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Walmart’s Little Experiment Screwed My Hometown

 

20160202_165125In recent days headlines have announced Walmart’s decision to close their experimental neighborhood stores just a few years after the pilot program began. For many this is just another announcement of a mega-retailer changing strategy in order to improve profits. But what is a small failure to Walmart has huge, real-life impacts on the small towns where many of these neighborhood stores were built. A few examples are Oriental, NC; Redwater, TX; Chicago, IL; and Rose Hill, Kansas. People lost jobs, but not before many towns lost their locally owned, family run grocery stores and pharmacies that had adequately served the same community through thick and thin for decades.

In Oriental, Town N Country, in business over 40 years, held on as long as possible against the monopoly and sadly closed at the end of October, 2015, less than three months before news came that the Walmart neighborhood market would be closing. Oriental is a quaint fishing village with a lot of quirky retired people.  We didn’t make national news, but now we’re left with no grocery store and no pharmacy in our village of 900 people.  Our marriage with Walmart cannot be annulled and it came with no prenuptial agreements, so we are left to deal with the mess left on our doorstep. Continue reading Walmart’s Little Experiment Screwed My Hometown

One of the ‘Some Days’

Flashback: March 26, 2015

Today is one of the ‘some days’.

Some days, I wake up in a paralyzed body. Paralyzed by pain, fatigue, anger, confusion, loss.

Some days I wake with two metal rods in place of the muscles around my spine. Someone inserted them during the night and turned on the heat. I am on fire.

Some days I wake in a fog, seeing myself as an island of disease and disability. I am a spider under a lens with its body in focus while the extremities are blurred. My whole being is my lower back, with things like arms and legs tacked on as extras. I feel pain but I can’t move to make it stop. As my senses come alive I become aware of the pain radiating along my whole torso with intensity that only increases.

Some days I wake in fear. I want to move, but movement means pain, yet remaining still means pain. I am afraid of my body yet I am trapped inside it.

Some days my arms flail or just lift and fall when I try to move them – I am paralyzed.

Some days I wake with stiff muscles that spasm if touched. If I bend my knees to my chest to stretch, my body rejects the motion because of those metal rods of muscle some evil force stuck in me and my whole back spasms.

Some days I wake with anger that I am no longer the person I never imagined I could lose. I am grieving the loss of Charis. I am the remnants of Charis and I am trying to make something of what’s left.

I will never give up hope that people living with severe chronic diseases can live more normal lives without fear.

Maybe, one day, I will wake up without fear.

Ten Reasons I Am Proud to Be An Episcopalian

There are a lot of these lists going around, but in light of the current sanctions imposed by the Anglican Communion against The Episcopal Church, I felt it was time to throw my #EpiscopalPride out there.

Why I am sticking with a church the Anglican Communion is afraid of:

  1. I can be who I am, openly, and expect full inclusion in the life of the church – that means female or male or trans*, gay or straight or queer, black or white or tan, democrat or republican or libertarian, old or young or middle-aged, famous or not, etc.

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    And don’t forget it.
  2. I can be ordained as a deacon, priest, bishop, or presiding bishop as a female. And I can be ordained and have a husband or wife. And sex. And children.

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    Because gender doesn’t matter when it comes to leadership and service.
  3. I know I can find comfort in the liturgy at any Episcopal service I attend.  It’s the same every week. I can follow the service in any language and know what’s being said. It’s predictable. Did someone say BCP?

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    It’s all RITE here.
  4. We are adaptive to the changes of the modern world and take prayerful action to be part of today, not yesterday. We are constantly considering the scriptures as they relate to the world today so we can remain relevant.

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    And that includes a radical, loud welcome, because Jesus was loud about embracing the marginalized and being in the world, not hidden away.
  5. We allow room for embracing beliefs and practices of different religions and cultures. My faith is stronger because of this. The Episcopal Church does not close its doors or punish and condemn its members for appreciating a range of beliefs and ideas. In fact, I think one of our strengths is our collaborative spirit.

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    Taiko drummers at General Convention 2015
  6. I’m encouraged to question anything, knowing that chances are I’ll then be able to engage in a loving, powerful conversation where both I and my priest/friend/bishop/committee will learn more about our own faith journeys.

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    Shirt modeled by Matt Scully
  7. Our governing structure is largely democratic.  Lay people’s votes carry the same weight as those by clergy, with one exception for bishops – but all political changes are debated and voted on by many committees as well as by both laypeople/clergy and bishops before becoming church law.

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    Yep, that’s me.
  8. We don’t operate as a church that requires a middle-person between people and God. We don’t like hierarchy in that way.  We trust people to have an open relationship with and to be able to communicate freely with God without an intermediary.

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    Washington National Cathedral. Have a seat and chat with God a while.
  9. We’re a missionary church in everything we do, by definition and official corporate title. And our job is not to convert people to think like us – that’s not our interpretation of being evangelists. We show the love of Jesus with no strings attached because that’s what the gospel is. That’s what we are called to do – love.

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    Love thy neighbor is not a multiple choice circumstance.
  10. We really know how to hug.  Have you hugged an Episcopalian today?

 

 

My Body’s Symphony

When you see me you see a picture of health. A young body. Eyes that shine through the pain. Even my doctor says, “So you’re healthy aside from your diagnosis of Ankylosing Spondylitis, so that’s good.” What an ironic statement.

I see a body in the mirror that looks like mine, but this is not my body anymore.  This body now belongs to someone else, it is a stranger’s body.2015-03-28 14.33.58

Look past my face.  Look past my beautiful face to the pain.  Slight outward signs, my physical insecurities, only wait for the trained eye to discover: discolored splotches of skin, a slight hunch, constant readjusting when seated or standing for long periods of time – indirect signs of a disease that causes far more insecurities than the clinical diagnosis on paper can possibly reflect.

Look at ME! Past the click bait, that fancy model pose that got you here. Here, a glimpse inside my twisted fate, my gnarly spine. I’ve got plenty of backbone, thank you, that leaves me in an ironically fragile state. Bone spurs take root and strike a nerve softly like the soft staccato of pianissimo on the baby grande, until my legs give way – the build up of a chord deep within (thudding along, a low F on the bass clef) until an avalanche of sound screams from within my joints. This is my symphony – all my cells screaming (begging), “Finale!” while the inflamed audience – the peanut gallery – screams, “Encore!” It must be raining today the way Beethoven has woven his angry Symphony number 5 in C minor through my body.  Or maybe Dvořák’s Symphony number 9 in E minor. Beautiful pain. Continue reading My Body’s Symphony

Learning How to Fly Again

When I was diagnosed with ankylosing spondylitis my life flipped upside down. It was as if I was born into a new body; one that I never imagined could exist. I was a baby and everything was new again. But not exciting. It was new and scary. And my life is still upside down.

I still remember the feeling of intentionally exhausting myself playing soccer or running or dancing all night, then waking up happily sore the following morning. This is not what my body feels now. Now, no matter what I do the day before – whether I just went to work, cooked, gardened, or even just stayed at home “resting” – my body reacts as if someone is constantly sticking pins into my voodoo doll and twisting them deeper and deeper into my bones and joints.  My muscles are just trying to keep up. Continue reading Learning How to Fly Again