mathematics is beautiful #4: chronic pain

Tonight’s infographic is all about chronic pain. Note the visualization in the center, where only one little person out of more than 7,300 is highlighted, and compare it to the visualization above it, where it shows one person out of three. For every person who dies due to an overdose of opioid pain medications, another 3,029 Americans are suffering from chronic pain.

Those 3,029 people have to give a urine sample each time they need to see their pain management specialist. When they experience excruciating breakthrough pain, they are turned away at the emergency room as drug-seekers. Most of their doctors don’t know how to help them, and so these patients come to believe at least once in their journey that their pain and disability are their own fault. We need to change this conversation.

chronic-pain-infographic.png

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say THIS not THAT

What a workweek!  Last week I got a new project assignment, and have spent most of the weekend, workdays, and worknights crafting a slide deck for a software pitch, including making lots of graphics.  So these statistics infographics I’d been making every day — suddenly I had no creative energy left in my body, heart, and mind.

Tonight’s offering is, instead of a stats graphic, a chronic illness graphic. You can be equipped with better words, instead of saying frustrating or offensive things to a friend who has a disability, a chronic condition, an invisible illness.

say-this-not-that.png

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disability

This past weekend, I came across a quotation about migraine. A World Health Organization study had said that a person experiencing severe migraine is as disabled as a person experiencing dementia, active psychosis, or quadriplegia. I read it out loud and said, “Well, clearly mine have only been moderate.”

Then I realized that I’ve driven myself to work three or four times over the last three or four months. That’s pretty disabling.

Continue reading →

tmi warning: this story includes pee and pee-related themes that may be unsuitable for children or adults

So today was the appointment with the pain management specialist.  It’s the appointment I’d been anticipating for a couple months.  I took the very first appointment available, even though it was at a terrible time in the middle of a workday.  I packed up my med bag this morning, rescheduled an interview with a job candidate that had gotten booked at the same time as my coveted appointment, hit the ladies’ room on my way out to relieve the overfull bladder, and went to the doctor.  On my way, I stopped to pick up lunch, including about 20 oz of water.

When I arrived at the doctor’s office, the receptionist remembered me from four  years ago, which was nice.  She gave me my paperwork to fill out and made copies of my ID and insurance card.  I sat down to my work and had filled out about two-thirds of the forms when my name was called.  First stop: the restroom, for a urine sample.  They have to trust that you are not misusing, abusing, or overusing pain meds or psychoactive meds, and that trust has to start in empirical evidence.  But there was a problem: there’s a minimum sample size required, and I didn’t have it.   Continue reading →

gloria in excelsis!

At this moment, my body does not feel any pain at all.

None.

No pain.

Unless you live with chronic pain, you probably don’t know what this means.  I have lived with pain as a companion every day since August 2006.  Every single day.  There has been no respite, no time when I was free of pain.  Not once.  I mourned the loss of a pain-free life, just one pain-free day.  Somehow I managed to keep the barest flicker of hope alive, but there were bad times when it was almost snuffed out.

Words cannot express the joy and deep gratitude in my heart right now.  Even if this strange no-pain doesn’t stay with me through the entire day, even if today was the only day I’ll find it, even with that, I would still need to sing out praise and thanksgiving.  It takes music, dance, art to tell you what it means to be without pain.

My joy is like the clear blue sky above,
autumn-clear, swept free of every cloud.
My gratitude is like the swift-running river,
fast and quick, dancing and jumping over rocks.
My delight is like a playful puppy,
a frisky kitten,
a child laughing and running.
My heart sings with the voice of the wind through the trees,
the voice of the ocean on the sandy shore,
the cry of the gull, the cheep of the cardinal, the song of the lark,
the roar of waterfalls,
the rumble of locomotives,
the quiet purr of the aging cat.

There is a cost for this lack of pain.  The cost is my new medication.  In terms of monetary cost, it’s in a higher tier of my formulary, and apparently not available as a generic drug yet.  In terms of side effects, I’m dealing with somnolence and problems thinking.  I hope that there will be an adjustment period, after which these costs will be easier to deal with.  If not, then I will have to make some choices about how I live and work.  But right now?  Those costs are absolutely, completely, one hundred percent worth it.

A day without pain.  How often have I prayed for this, begged for it, pleaded with God for it?  Today it is in my grasp, and so I will sing.

Glory to God in the highest
and peace to the people on earth
whom God favors!

My soul proclaims the greatness of the Lord;
my spirit rejoices in God my savior
for he has looked with favor on his lowly servant!

Be joyful in the Lord, all you lands;
serve the Lord with gladness,
and come before God’s presence with a song!

Sing praises of the Lord, for he has done great things,
and this is known in all the world!
Cry aloud, inhabitants of Zion, ring out your joy,
for the Great One in the midst of you is the Holy One of Israel!

Glory to the Father, and to the Son, and to the Holy Spirit,
as it was in the beginning, is now, and will be forever,
world without end!

 

In the world, but not of it

It’s what Jesus tells us to be: in this world, but not of it.  It’s also how I feel each night, once the sun has set and the sky has turned to black, once my husband turns into a pumpkin.  This is the time I feel like I’m floating through our home, half afraid I’m not completely substantial.  All is quiet.  I can hear the hum of my hard drive, the trickle of the cats’ water fountain, the rush of air when the air conditioning or the heat turns on.  I might hear my husband’s deep, even breathing from down the hall.

I’m tired, but nowhere near sleepy.  Often, I feel exhausted, enervated, my body’s resources down to a sliver.  “I’ve only got one bar left, but I know it doesn’t have much time.”  If I were a Blackberry, my power status would read 7%.  Most people who will read this blog post have no idea what 7% of their energy and resources would feel like.  When most people say they’re exhausted, they’re still at about 50% power.

It’s a strange state to be in, so profoundly tired and yet unable to sleep.  My ears ring as the earth revolves beneath me.  Somewhere in this world, it’s early morning, it’s lunchtime, the family is sitting down to supper.  Somewhere in this world, a woman is giving birth to her first child, a family surrounds a beloved elder who is dying, millions of people are working in factories and offices and fields.  Somewhere in this world, soldiers are killing each other, and some of those soldiers are children.  Somewhere in this world, snow is falling; somewhere in this world, the high temperature will exceed 90 degrees Fahrenheit.  Somewhere in this world, the devout are gathered in prayer.  And somewhere in this world, someone else is wondering when he or she will get to sleep tonight, whether he or she will get to sleep tonight.

I didn’t sleep last night.  I tried one bed, tried another bed, tried a different pillow, tried different positions, tried kicking the cat off the bed, tried reading, tried deep breathing, tried prayer, tried visualizations.  I finally gave up and put in some time at my job.  It was 6:30 AM when I was finally sleepy.  Oh yeah, and I take five different medications that cause drowsiness, one of them an actual sleeping medication.  Every night, I swallow enough downers to halt a charging rhinoceros.  And yet, every night, I sit alone with my tinnitus, still physically in this world, but feeling disconnected from it.

I float from book to computer to midnight snack to glass of water to book to breathing to prayer to meditation to heating pads for the aches to ice packs for the sharp pains to my neck-support pillow to a regular pillow to no pillow at all to my child’s bed to my bed again to sleep, finally.  In the morning — which I say to myself, even though it’s technically already morning — I’ll have to work, and I’ll have to try to be alert so that I can think and reason.  It’s only on the Saturdays when I feel caught up on rest, but then Sundays are filled with worship and teaching and singing and even the two-hour nap fails to stave off exhaustion.

I am in this world.  I feel my feet on the ground, my bottom on the chair.  I feel all the pains that remind me I exist.  Descartes’s evil demon can tweak our thoughts — anyone who has ever experienced depression or another brain disorder, or even dehydration, has noticed this — but pain, yes, pain tells us we exist and that we have physical bodies.  Pain holds me in this world.  Fatigue and insomnia separate me from it.

Once the day begins, once the sun is up, once the children board school buses and the grown-ups leave for work, I remain in the world but not of it.  I observe the world through my windows, too tired and hurting to participate in it.  Truly, I’d love to have lunch with you, but I need a nap today.  It would be great to get together and sing, but I need to take some pain meds and lie down with my heat pack.  I know we’d made plans to get together this evening, but I have to cancel; I don’t even have enough energy to order supper by delivery.  I float through my days, existing here among you, in your very midst, but invisible.

I work from home, telecommuting to my job.  You never see me in the office, so I’ve become invisible to you.  I’ve canceled so many get-togethers that you don’t even call me any more, so I sit alone with my cats and my books and I try to be sociable and social on the computer.  I feel my feet on the ground, my bottom on the chair, but no hands to hold mine, no arms to embrace me, no voices to listen to.  I’m not even forty years old yet, and I’m almost a shut-in.  I laugh when I tell someone, I may not be old but I’m certainly decrepit! But this is only funny because it overlies the deep ache of being in the world but not of it.

I don’t know what tomorrow will be like.  It’s 11pm now, and I am not yet in bed.  I’m not sure right now what is real and what is imagined.  Is anyone out there listening?  Do I want anyone out there to listen?  God, why do my husband and I have such opposite sleeping patterns?  Why do I have these chronic conditions?  How long, O God, will I suffer?  Will there ever be relief for me?  Will I ever know what it is like to experience a normal day again, a day without pain?  I’m so tired, God.  So tired.  When will I find rest?

On another blog, I posted the prayer for sleep, from the healing office in the Book of Common Prayer.  It’s a lovely prayer, and it touched deep places within me.  For just a moment, I felt that connection with God that fully connects me with God’s creation.  I felt like I belonged, like I really was part of the world and not just occupying space in it.  Then the sense of connection faded, and I was left again, alone with the ringing in my ears, with the humming hard drive and the trickling water fountain and the rushing air from the heat pump.

Do you know what month it is?

It’s National Disability Employment Awareness Month, established by the US Congress in 1988.  The theme established for this year is one that I’m very passionate about, the value brought to workplaces, places of worship, communities, and our nation by diversity.

“Talent Has No Boundaries: Workforce Diversity INCLUDES Workers With Disabilities”

The theme serves to inform the public that workers with disabilities represent a diverse and vibrant talent pool for hire. This theme epitomizes Secretary of Labor Hilda L. Solis’ commitment to “good jobs for everyone.” “The solutions and innovations applicable to the successful employment of workers with disabilities impact the entire workforce, including aging workers, injured workers, at-risk youth, women, people of color, and unemployed and underemployed workers,” said Kathleen Martinez, assistant secretary of labor for disability employment policy.

I’ve written more than one post on this blog describing my disability journey, from “something’s wrong with my shoulder” to surgery, into chronic pain, to my diagnosis with Ehlers-Danlos Syndrome two years later, through my struggles to continue working and mothering and keeping house with increasing pain and disability, through bankruptcy, through losing the house I’d worked so hard to buy on my very own, to admitting to maplestar that I could not handle living on my own any more, and up to the present where I’m on medical leave from work, my initial short-term disability claim denied (in appeal!) so that I’m working a fraction of my time and earning a fraction of my salary.

What may not always be clear when I write here is how much my employer has done to help me keep working.  I am a professional woman, nearing 40 years old, who has been working full-time since I was 20.  I am a Little Person.  I have Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, osteoarthritis, and an autistic spectrum disorder.  My employer has given me a desk that is short enough for me, while I use my own custom chair to keep my feet flat on the floor, my elbows at that perfect 90-degree angle, and my back against the back of the chair.  I see you with that confused look on your face, wondering why this is even worth mentioning.  Well, until I had my custom chair and my custom desk, I had never experienced the feeling of sitting at a desk with my feet flat on the floor and my work surface at the proper height.  It was so empowering, so wonderful!  And you’ve probably taken it for granted for most of your career.  My employer has also issued me an ergonomic keyboard, which I use with my own professional-model touchpad (not those nasty things that come on laptops), and voice recognition software.  My employer even allows me to telework, so that when pain or fatigue flare, I’m mere steps away from ice packs, heating pads, medications, and rest.

I have a good job, a good salary, and good insurance.  Every year I have the maximum $5,000 deducted from my pay (pre-tax) for healthcare expenses, and every year I exhaust these funds months before the deductions are finished.  I will need physical therapy and pain management care for the rest of my life.  EDS does not have a cure, and treatment is to try to keep the connective tissue from getting too much worse.  EDS is not itself a progressive condition, but it causes conditions that are, like osteoarthritis.  When I’m invited to a meeting, a movie, a picnic, an afternoon of bowling, I don’t know how I’m going to feel that day.  It could be an okay day, or it could be a horrible day; good days have become quite rare for me.

Through this all, my employer has stood up for me, kept me working, and given me a place where my perspective is invited and valued.  Some days I may feel this less than others, but I am grateful and appreciative for this opportunity.