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.

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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!

 

thy kingdom come on earth

Let me just start out by saying, the United States is not the Kingdom of God.  In God’s Kingdom, all are filled with health and vitality; in the United States, we allow our sick to be stripped of their homes, to be arrested and imprisoned rather than treated, to lose the things that give them respect, esteem, and independence.  In God’s Kingdom, there is no marriage and divorce; in the United States, these exist, but are not available to all who need or want them.  In God’s Kingdom, forgiveness and love are treasured values; in the United States, we seem to most value fear, anger, and hatred.

Today, in this earthly kingdom, my body fails me.  If you’ve read this blog before, you’ll know that I have Ehlers-Danlos Syndrome, which is an inherited connective tissue disorder that has caused me recurrent injuries (sprains, strains, subluxations, dislocations) and chronic pain.  Also associated with EDS and affecting me are Chronic Fatigue Syndrome and several dysautonomiae, including vertigo, low body temperature, and Raynaud’s-like temperature sensitivities.

Also in this earthly kingdom, I work a desk job.  I’m blessed to work as a skilled professional, and I’m similarly blessed in terms of salary.  And I spend much of that on prescription medications, doctor visits, physical therapy visits, therapeutic procedures, braces, splints, and purchasing conveniences (like meals out) that reduce the incidence of injury and/or pain levels.  So yes, I spend dollars to relieve and alleviate pain, and a lot of those dollars go to meals that I’d really prefer to be able to cook for myself.

In early August, my doctor and I discussed going on disability.  Between EDS and CFS and full-time work — yes, this is full-time work at my ergonomically-optimized workstation, which is in my home — my body was exhausted.  Not exhausted like “I just mowed the lawn,” but exhausted in its true sense, meaning “used up.”  So on August 5, I did not work.  My short-term disability claim was filed (and there were shenanigans, including incompetence and good ol’-fashioned American laziness), and on September 14, it was denied.

Right now, my doctor has cleared me to work 12 hours per week.  My employer will not allow me to work more than this right now; of course not, because they don’t want to be liable for harm to my body from working more than my doctor says is safe!  So imagine your pay for a moment; now imagine about a fourth of it; now give serious condition to living on that for the next few months.  But wait!  First you need to go unpaid for a month.  THEN you can live on about a quarter of your regular pay.  For the next several months.  That, or live with your normal salary, but completely unable to enjoy any benefits of it.  Like a home-cooked meal.  Like a vacuumed carpet.  Like getting through an entire workweek without having to use any vacation or sick time for profound pain or exhaustion.  Oh yeah, and because you have so much absenteeism and because your productivity has tanked, you’re under constant fear that you’ll lose your job entirely, so you wouldn’t even be able to get any disability benefits whatsoever.

This is not the Kingdom of God.  Heck, this is one crappy kingdom for human beings!

So, yeah.  Having Ehlers-Danlos Syndrome in the United States in the 21st century has already cost me my house, in bankruptcy last year.  It has wrecked my career and made me virtually unemployable — who wants to hire someone capable only of telecommuting, with a horrible record for absenteeism and productivity?  Now I’m only wondering how long it will be until my husband and I are living in our van down by the river, literally.  And the best part?  Disability attorneys don’t even want to talk to me.  They tell me they’ll be willing to talk to me once my application for Social Security Disability has been denied, but can’t offer me advice until then.  So I’m hamstrung by being a skilled professional with a good job and good benefits.

My husband and I joked about being glad he’s working at the parish he is, because it has a great outreach ministry to a homeless shelter nearby.  We laughed about having our first cardboard box as a married couple and the fun of looking forward to finding a nice roomy refrigerator box instead of our starter home in a microwave box.  And right now, I weep.  I weep because I don’t know what else to do.  My husband and I aren’t going to qualify for any kind of assistance program until we lose most of what we have.

But hey, my monthly withdrawal to the IRS for this year’s owed taxes bounced last month.  Maybe they’ll arrest us for tax evasion, so we can have a nice comfortable home in federal prison.

Because that, my friends, is the United States version of the Kingdom of God.

a day in the life

EDS Network CARES has declared May to be EDS Awareness Month.  I haven’t blogged on Ehlers-Danlos Syndrome here for a while, so today you get to see a day in the life of someone who has EDS.

Friday, 6:00 am

"Spoons" by Roger Smith

"Spoons" by Roger Smith

I pull mostly out of sleep and glance at the clock. I have to take my daughter to school early today. I don’t want to get up. My husband slips quietly into the room to wake me — we’ve found that the alarm clock, even on a radio station, even tuned in softly, startles me awake, stressing my body and starting off the day on a bad note — and I turn to face him.  I begin taking inventory. Headache? None. Neck? Stiff, not spasming. Shoulders? Both subluxed. Upper back? Sore, probably to start spasming once I’m vertical. Lower back? Mostly okay, but I can feel the ghost of pain to come. SI joints? I think one is out, but I’m not sure. Hands? Fine now, but they remember how awfully they hurt yesterday. Knees, ankles, feet? We’ll check in on those once I’m upright.  I know I’m going to be low on spoons again today, but I’ve got to make that drive. After that, I’ll re-evaluate.

6:45 am

I’m driving home from the high school, my hands roughly at 9:30/2:30 on the steering wheel. The left side of my neck starts to spasm and cramp.  I move my right hand down to 4:00 and rest my left hand in my lap. I’d planned to go back to bed as soon as I got home, but I’m already too awake. I expect that I’ll need to be horizontal before noon, to take stress off of joints.

When I get home, I consider a shower. Showers are good things, invigorating, relaxing, cleansing… exhausting. Holding my hands up long enough to wash and rinse my hair is incredibly uncomfortable, and it wears me out so that I need a rest of 5 or 10 minutes before I do anything else. I don’t have any appointments or other plans for today, so I’ll skip the shower until later.

I decide to go ahead and start working.  I’m already down 4 hours for this week, and I know I won’t be able to put in a full workday today. I also have -10 hours of vacation; that’s right, I owe 10 hours to my employer.  I earn 7-point-something for each two-week pay period, so if I want to bring it back into the black, I’m going to have to just not get paid for some of these hours my body needs. I think again about disability leave, and make a mental note to call the disability lawyer to make a first appointment.

8:00 am

"Little Computer Person" by quannum

"Little Computer Person" by quannum

Because I’m only 4’9″ (~145 cm) tall, I qualify as a Little Person. My body parts seem to be in proportion to each other, which is a good thing — at least I can attempt to wear “normal” clothes! — but few things in the world are made for someone this height, outside of the fourth grade.  My desk is actually a height-adjustable student work desk from a school furniture catalog.  Height-adjustable desks for “normal” adults, that can be adjusted low enough for my ergonomic needs, are pretty pricey.  I sit in the ErgoChair, which is specially designed for Little People; it cost me $800 — and I paid for it myself, because I want to keep it! — because none of the commercially-available office chairs adjusted low enough to the floor to keep my ankles, knees, and hips all at that perfect 90-degree angle.

I use an ergonomic keyboard to help hand strain, and I use a good touchpad (not like the crappy ones that come on a laptop computer) to prevent the worst strain to arm, shoulder, neck, and back.  I’ve been at my desk for an hour now, and I can feel it.  Even with desk, chair, and monitor adjusted just right for me, even with input devices within reach, even sitting with correct posture — even with all of these, I’m already hurting.  I have muscle spasms across my neck, upper back (from the bottom of my neck to the bottom of my shoulder blades), middle back (from the bottom of my shoulder blades to the top of the small of the back), and lower back (from the small of my back down to the tailbone).  My knees and ankles ache.  My hands are starting to hurt.  Yesterday, they felt so awful, I expected to look down and see them swollen and clumsy, like baseball gloves. At the worst times, I would cradle them in my lap or warm them in my underarms, biting back sobs.

9:30 am

"day 67_two cold feet, one warm slipper" by anitacanita

"day 67_two cold feet, one warm slipper" by anitacanita

I feel so hot! My body doesn’t tolerate feeling hot, so this makes me feel a little light-headed and a little nauseated.  I pull the hems of my pants up to my knees, splash some water on my face, and turn on my fan.  Ten minutes later, it still feels hot inside my head and torso, but now my feet are freezing.  Yesterday, I just couldn’t get warm all day long.  The thermostat has remained set to the same temperature for weeks now.  This temperature stuff is a dysautonomia, a glitch in the autonomic nervous system.  The autonomic nervous system takes care of all the body processes that we don’t have to think about: it regulates breathing, heartbeat, digestion, body temperature, equilibrium.  For some (not yet fully understood) reason, EDS and dysautonomia are highly correlated.  Normally my slippers stay under my desk, but yesterday I accidentally left them on when we went out on an errand; when we returned, body memory took over and slipped them off right where my shoes already live.  I consider the 20-foot trek for the slippers, but decide against it, wrapping my feet around each other in an attempt to warm them.

Fatigue is taking over, too.  I’ve noticed that the cognitive effects are almost measurable. I am hooked on the online games at DKM Games, and their Shisen game is a great indicator for me.  When I’m fairly fresh, I can find the tiles easily.  When fatigue is winning, though, I can review the board row by row, column by column, in chunks, or by unfocusing a little to let the matches pop out… and I just can’t find what I want.  If I had (or wanted to write) a utility to measure this, I’m sure it would be revealing.

11:30 am

I’m hungry. I got an early start on the day, and skipped my mid-morning snack.  My digestive tract moves very slowly, so I have to eat smaller portions more often; I can get the weaky-shakies (as my mom calls them), too, so I have to make sure I’m getting protein.  I’m afraid to stand up, though.  My entire back is on fire, and I know that being fully upright is going to be murder on my lower back.

"Pain Scale for Children" by Wayan Vota

"Pain Scale for Children" by Wayan Vota

In pain inventories, we’re often asked to describe our pain.  Is it sharp, stabbing?  Is it dull, aching?  Is it soreness, like after a good workout?  Is it a burning pain?  I’ve noticed that, at least for myself, these suggestions are incomplete.  I regularly experience pain that feels more like pulling and tearing, like a joint is being pulled out of place.  Sometimes, when I have my arms at my sides, my shoulder will feel like a weight is attached to my hand, pulling the arm out of the socket.  Right now, my back feels like there is a person on each side of me, stretching the muscles until they either come off of the spinal column or pop the vertebrae themselves out of place.  Along with that is some burning, aching, soreness; it can be sharp at times, and definitely feels like muscle spasm.  But the primary character of the pain is pulling, tearing.  I still haven’t figured out how to describe this to a doctor without sounding like a drama queen.  At least my physical therapist seems to understand.

12:05 pm

I toast a slice of wheat bread and slather peanut butter on it.  With a glass of lemonade, it assuages the hunger. I really want to go to bed, but I want to put in as many work hours as I can today. I decide to try to stick it out another hour.

I drink some lemonade and set down the glass.  Looking at my monitor, I realize that the document looks completely unfamiliar to me. As I always do when my brain refuses to work properly, I give my head a little shake.  It doesn’t help the brain. It does exacerbate the muscle spasms in my neck. Recollection fades into my mind, and I know what the document is. I’m not sure what I’ve done on it today and what more I need to do. I need to page up and down a few pages to refresh my memory. A five-minute break to toast some bread feels pretty much the same as sitting down at my desk on a Monday morning, last week’s work faded into the background.  I don’t like this feeling.  When your employer wouldn’t care if you were a brain in a jar, so long as you could interact with your computer, it’s more than a bit scary for the brain not to work properly.

12:15 pm

An email comes into my inbox.  It’s one that I get a courtesy copy of, but I don’t need this one for anything.  I delete it.  I click over to my personal email, read three new ones.  One was a follower on a social network, so I check my feed over there and see if there’s anything I need to respond to. There are some new items in the chronic illness support group, so I make a couple replies. I’m still in my browser, so I start a game of Shisen. I don’t even remember that I’m sitting here at my desk to work.

12:25 pm

My Shisen game over, I sternly remind myself what I’m supposed to be doing.  I close all the tabs of my browser that aren’t work-related, and bring the document back up again.  Uh oh… what was I working on?  It takes me a few more minutes to refresh myself and get into it again.

"day 159" by sarahluv

"day 159" by sarahluv

My hands hurt. My elbows hurt. My knees and ankles and hips hurt. Every inch of my back hurts. The knuckles in my toes ache.  You didn’t know you had toe-knuckles?  Well, you do.  I know we have them, because mine hurt. It’s funny the body parts you become aware of when all of your joints are hypermobile.  I try stretching my feet and toes to relieve the tension.  I remember how surprised my father was to see me lift my big toe up at a 90-degree angle to the others, without moving anything but the big toe.  “What, you mean you can’t do that?”  “NO!”  “Huh.”

I know I need to lie down, but I’m trying to make it until 1.  Then maybe I’ll try a rest.

1:20 pm

I’ve actually gotten in about an hour of good, solid work.  This is the most progress I’ve made in days! I check the document in, massage my hands, and look at the clock.

Dammit. I have to leave to pick up the kids at school in 40 minutes. That’s not enough time to make it worth my while to lie down. Having to get up from the chair, move to the horizontal surface, lie down, and then get back up again about the time my body starts to relax is just frustrating. Everything knots up again.

"Waiting with good posture" by quinn.anya

"Waiting with good posture" by quinn.anya

So it’s Friday afternoon, and I have 40 minutes in which I don’t really want to start a new task. I click over to email, file some emails that I’ve finished working with, check the clock.  1:25.  I check my personal email, read and file four messages, check the clock.  1:28.  God bless it, but I hurt!  Even my butt cheeks are getting in on the fun! I remind myself of the good posture stuff: shoulders back; boobs lifted up; pelvis tipped slightly backward, as if a string runs from the top of each cheek to the ceiling; eyes straight ahead; spine straight from tailbone to back of head; hands relaxed atop my keyboard; back against the back of my chair; feet on the floor.  Yeah, it still hurts.  And it’s 1:29.

Nothing new on the social network, so I start another game of Shisen. And another.

1:55 pm

Soon enough, my 5-minute reminder pops up, so I set myself away in my instant messaging client and lock the computer.  I take a deep breath in, and stand up from my chair while exhaling.  The cats are watching me closely, hoping that I’ll feed them. They know the sound of the three-finger salute, and when standing up follows it, they know this means DINNER.  “No good, ladies,” I say to them. “You’re a few hours ahead of me.”

"Bride of Frankenstein" by Kaptain Kobold

"Bride of Frankenstein" by Kaptain Kobold

Walking across the room is not fun. I know I look like Frankenstein’s monster, because every muscle from my calves to my shoulders is tightly knotted up. I put on my medic-alert bracelet (Don’t leave home without it!), slip on shoes, and grab my purse and keys. I remember to pick up my Kindle, in case I’m a little early.

I’m so glad to have an e-reader. It is an essential accessibility device for me. I love to read, and was brought to tears of frustration and grief many times by the pain I would feel when I held a book to read.  My mother gave me the Kindle for Christmas, and it has been the best improvement to my quality of life that I’ve experienced in years.  I cannot tell you how grateful I am for it… even when this 10-ounce device feels too heavy for my hands and arms.

2:20 pm

The kids are in the car and we’re heading home. The warmth of the seat against my back feels nice, but driving position makes my hips feel that same pulling/tearing sensation I was thinking about earlier. The worst is short trips around town; when I can put the car in cruise control for long interstate stretches, it doesn’t affect my SI joints, hips, and legs so badly.

“Momma, can we go to Wawa today?” my daughter asks.  I take a deep breath and make an intentional blink.  I won’t let it show on my face, but even a quick side-trip to the convenience store for sodas and sweets feels insurmountable to me and makes me fight to hold back tears and a little sob.

“Not today, sweetpea,” I respond.  “It’s been a really bad pain day for me. We have ice cream sandwiches at home, though.”

2:30 pm

We’re back home again.  The kids are in their rooms getting their homework knocked out so that they can enjoy their weekend.  I’m back at my desk, staring blankly at my screen.  Screw it, I decide, and pull up my timesheet.  I managed to squeeze out 7 hours today, which is pretty spectacular for me, especially on a Friday when I’m exhausted from a full week of work.

"Exhausted" by A Little Coffee with my Cream and Sugar

"Exhausted" by A Little Coffee with my Cream and Sugar

People throw that word exhausted around a lot, but I don’t think they know what it means.  If you have spoons left, you’re not exhausted.  When you’re on your last spoon, though, and you’re trying to decide whether to use it eking out another hour of work or to save it for dinner and TV time with the husband and kids — when this happens, you’re approaching exhaustion.  Exhausted means you have no resources left. No energy, no patience, nothing. You lie down. You rest.  Because that’s all you can do.  I have about a spoon and a half left. It’s time to rest, so that maybe after that dinner, I can get a load of laundry going.

I confirm a wake-up time with my husband, in case I don’t wake on my own by then. I grab a cryo-pack from the freezer and tuck it into its pouch.  And I head to bed.  I lie down, feeling the intense cold on my back, breathing deeply and practicing deep relaxation techniques (or, at least, trying to).  I consider reading, but not very seriously. Within five minutes, I’m asleep.

4:30 pm

My husband tiptoes into the room. I’ve wakened a couple times, shifted the cryo-pack, and fallen right back into oblivion. He lies down next to me, lays a hand on my shoulder, and whispers me awake.  I curl into his arms and snuggle against his warm body.  He apologizes for waking me. He always does, and it’s so sweet.  He strokes my hair, my back, and I gradually rejoin the world of the conscious.

As I stand up — slowly and stiffly — I wish once again that I didn’t keep developing a tolerance to the “good” pain meds. Vicodin, oxycodone, darvocet, and now tramadol: all of them are now useless to me.  All I really have for pain right now is an anti-inflammatory. I have an anti-depressant that helps with pain control, too, but we have yet to achieve a baseline pain level that keeps me functioning for a full workday, much less for things like preparing meals, washing dishes, taking showers, and shaving my legs. I’m still grieving for the loss of the tramadol, and the loss of hope that goes along with it.

Hope really is insidious for someone who lives with chronic pain. We have to remain hopeful, but each time one of our hopes is lost, we grieve one more time. This chronic illness has been a series of grief cycles for me. I grieve when I discover one new thing that is unsafe for me, because it causes injury or it hurts too much or it takes too much energy from me. I grieve when a promising medication or therapy doesn’t work out. I grieve when we have to change plans, to cancel some activity or concert or meeting or visit that had excited me, because there’s no way to predict my spoon count on any future day. I grieve for my career, past its pinnacle though I haven’t even hit 40 years old yet. I grieve for future opportunities that are closed to me now. Sometimes there’s a gap between grief cycles. Sometimes there’s none. Sometimes the damned things overlap. I just try to ride the waves, keep my head above water, and keep moving. I may be moving in the wrong direction, but if I stay in one place, I know the water will eventually wash over me.

5:30 pm

"Happy Sunday dinner" by NoWin

"Happy Sunday dinner" by NoWin

I’m reading my Kindle on the couch. The only thing certain about dinner at this point is that I’m not cooking it. I haven’t had anything since the peanut-butter-toast, and I’m hungry. My husband asks what I’m in the mood for.  I decide not to say “Sleep,” instead shrugging.  He says, “Yeah, me too.”  We throw out some ideas and end up deciding on a nearby pizza and pasta place.

The chairs are too tall for me.  So are the booths.  Like always, my legs swing as if I were still eight years old.  When I hold them still, I get the pulling-out-of-the-socket feeling in my hips.  The world just isn’t made for people like me. I try to decide whether it would have taken less toll on my body to just make something at home, and then decide that such speculation is futile. I eat about half my salad and half my pasta, and get the rest boxed to go home.

7:00 pm

I’m incredibly tired, but not the slightest bit sleepy. So many places hurt that it isn’t even worth taking inventory.  I’m stretched out on the couch, because my body needs to be horizontal.  We watch a DVR-ed episode of something, and then my brain is tired of television.  I pick up my Kindle and escape from the room.  Every so often, my husband shares a tidbit from the show he’s watching or from his online surfing.  I am incredibly cranky, but trying not to take this out on him.  He’s so amazingly sweet and helpful, and I feel like a bottomless pit of drama and need.

9:30 pm

My husband has been yawning for almost an hour now, and in the last 20 minutes he’s dozed off twice.  He needs to go to bed.  Even though I took my nighttime medications at nine, I’m still not the slightest bit sleepy.  I know better than to go to bed when I’m not sleepy; this is a recipe for insomnia.  I accompany my husband to the bedroom and tuck him in.  On return to the living room, I take over the recliner.

11:25 pm

I finish the novel I’ve been reading and look up at the clock.  Holy cow! I didn’t realize it was so late already!  I take a deep breath, close my eyes, and assess my mental state.  Yeah, I’m tired.  I’m also feeling sleepy.  Good!  I slowly stand, turn off the lights, head to the bedroom, and slip into bed. The comfortable words of Compline begin in my mind, and my body relaxes as I embrace the prayer. My brain distracts itself with other things here and there, and when I realize this has happened, I gently call it back to prayer. I remember the Lord’s Prayer, but not much after that. I’m asleep.

Saturday, 1:37 am

I wake, my left shoulder on fire.  I roll over and slip back into sleep.

3:04 am

I wake, my knees, ankles, wrists, and hands aching.  I lie awake for a while.  Is that thunder?  The sound repeats, a little louder. It is. There’s a system moving across us tonight. That would be why everything hurts right now.  I listen to the oncoming thunderstorm, to the rain on the windows and roof, to the retreating rumbles.  In the midst of all this, I fall asleep again.

4:50 am

I wake, look at the clock, close my eyes again.

6:03 am

I wake and look at the clock.  Behind the blinds, the outside looks grey rather than black. I’m not ready to wake up.  I close my eyes.

"Oh. Hello, human" by sr. hedwyg

"Oh. Hello, human" by sr. hedwyg

6:56 am

MEOW!  MEOW!  I start awake and look at the cat.  “What is it, Majesty?” I ask, reaching out to stroke her fur.  She settles onto the bed, leaning into my hand.  After a few minutes, I stop stroking, simply leaving my hand on her side.  She falls asleep.  So do I.

7:12 am

I don’t want to be up yet.  I’m not ready to face the day.  I close my eyes, but my mind is already switched on. My mind thinks about what’s in store this weekend, about the workweek just ended, about long-term plans for the future.  My body drifts in and out of consciousness; I know this only because my husband tells me later that he could hear me snore every now and then.

7:48 am

Realizing I’m not going to sleep any more, I decide to get out of bed.  But that’s a second day, so the story ends here.

happy new year!

I promise this won’t be one of those posts apologizing for not blogging for so long.  Life has been… full, so full that I won’t even attempt to catch you up on all of it.  My work is frustrating and wonderful and eating up every scrap of energy I have.  Chronic pain from Ehlers-Danlos Syndrome isn’t getting any easier, and it looks like it’s about time to have the other shoulder checked by the orthopedist for possible surgical repair.  My Dominican studies and Education for Ministry class are feeding me richly, when I have enough energy to really take part.  And my husband is the sweetest, most generous, most patient man in the whole world.  I’m truly blessed — I really do get that — but sometimes all these blessings really exhaust me!

Tomorrow, I meet with my manager face-to-face in the office here in town.  This happens only every few months because my manager works halfway across the country and because I telecommute full-time as an accommodation to disability.  And in the middle of the day, about the time my manager will want to head out for lunch, I have a phone call scheduled with his manager (who works all the way across the country from me).  The thing is, my manager isn’t really managing, and I don’t have the authority to make the decisions or to give the direction that need to come from him.  After months of this pattern, I realize that I’m not doing any favors to myself, to my team, or to our customers by allowing this to continue.  So after a direct request to my boss for the decision or direction that the team needs, when he doesn’t respond, I’ll ask his boss to give us the decision.  I’m tired of the political shenanigans.  We need a manager, and if our manager doesn’t want to manage, then I’ll find someone in the chain of command who will.

I’m assured by a co-worker who is not a complete bystander in the situation that this should not be a risk to my job security.  I’m not entirely sure about that, but it’s all right.  It’s the right thing to do for my team.  And I’m not going to let myself be afraid of it.  I just sat in quiet prayer for 20 minutes, and in that time, I heard all the reasons not to fear.

I am a survivor.
I have survived abuse.
I have survived depression.
I have survived attempted suicide.
I have survived separation and divorce.
I have survived chickenpox and pneumonia and flu.
I have survived lay-offs.
I have survived being laid off.
I have survived unemployment.
I have survived college.
I have survived nighttime grad school.
I have survived working with idiots, incompetents, and just plain jerks.

Nobody has power over me unless I give it to them.
Nobody can demand my trust… but I freely give it.
Nobody can demand my respect… but I freely give it.
Nobody can demand my love… but I freely give it.
Nobody can demand my obedience… but I freely give it.

I joke about being mean, and it’s all in fun.
The thing is, there are things that I am passionate about, even fierce:
giving love to every person
finding joy, at all times and in all places
doing the right thing
going about things in the right way
treating every person with respect
giving dignity to every person
believing the best of everyone
finding that almost always, they live up to this belief
giving my trust to everyone, even to strangers.

With God’s grace, I continue to survive.
I survive the pain of disability every day
I survive working, though it costs me
I survive tensions, conflicts, and arguments
I survive agreement, harmony, and peace
I survive boredom
I survive frantic frustration
I survive days when I don’t have time to pee.

And when the sun goes down on those days
when the night surrounds my home
I know that I am not alone.

Anything may happen in my life tomorrow.
I will survive it.
After all, what’s the worse that can happen —
I would die?
I have a promise, though, that I’ll survive even that.

Thanks be to God!

So that’s my anthem.  I know it might sound like a Gloria Gaynor song, but this song is mine, the song that sings in my heart tonight.

The pain index this evening is at about an 8 out of 10.  We have a rather nasty stormTonight's nasty storm blowing through tonight, and I can feel it in every joint.  My knees and hips seem to feel storm the worst.  My neck, shoulders, back, and arms feel the computer.  All of me feels the being a Little Person (my littleness is idiopathic, which means I’m just really short, without having one of the forms of dwarfism that cause disproportion)… but it still affects every facet of my life!  I know I’ll survive it.  I know I’m really blessed.  Sometimes it just gets exhausting, especially when I can’t get to sleep.

This Sunday is our service of Advent Lessons and Carols at church.  This is a worship service that combines readings from the Old Testament, up to the events leading up to the birth of Jesus… but not quite to it just yet, with traditional carols, hymns, and songs that reflect these readings.  It is a beautiful service, one of my favorites of the year, and I’m privileged to be participating as a member of two choirs this year.  There is also a service of Christmas Lessons and Carols, which is similar, and which many churches offer during Christmastide, usually the first Sunday after Christmas Day.  My parish includes an abbreviated service of Christmas Lessons and Carols during the half-hour before our “midnight mass” on Christmas Eve.  I’m excited, and I hope I have enough time for rest both before tomorrow night’s rehearsal and on Sunday afternoon!

Saturday afternoon, my beloved and I will be “ush-ing” at a local performance of The Nutcracker.  I’m really looking forward to this, too… the excitement of the children (and the adults!), the beautiful music, the lovely ballet.  The last time I saw even part of The Nutcracker was in December 2006, just before my daughter’s second spinal surgery, and only six months before my ex and I separated.  I stood in the wings with tears rolling down my face, knowing that I needed to bring beauty into my life.  So much has changed since then, and yet, I’m still the same hedwyg.

Well, it’s almost tomorrow, and I should try again to get some sleep.  God’s peace be with you, and God’s blessings be upon you.

Oh, and the Happy New Year thing?  This past Sunday was Advent I, the beginning of a new church year.  So I really meant it!

30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness WeekThis coming Sunday Monday, September 14, is the kickoff of Invisible Illness Awareness Week.   This week is a project of Rest Ministries, which provides support for the chronically ill in a Christian setting.  Invisible Illness Awareness Week is about both shining the light on invisible chronic illnesses, to help others understand that all around them — looking perfectly normal — are people struggling with a condition that is not obvious to an observer.  The week also provides support, encouragement, and help to those of us who have an invisible illness.  This year’s program is offered completely online, to recognize that it is difficult, if not impossible, for a chronically ill person to fully participate in a week-long conference in person… even if he or she can afford to travel to it and stay in a hotel all week.

As part of the awareness effort, I’m participating in the “30 Things” meme, to share about my invisible illness: Ehlers-Danlos Syndrome.

  1. The illness I live with is: Ehlers-Danlos Syndrome, Classical Type
  2. I was diagnosed with it in the year: 2008
  3. But I had symptoms since: birth.  I remember being diagnosed with “growing pains” when I was about 8, and I started spraining ankles when I was 13 or 14.
  4. The biggest adjustment I’ve had to make is: learning to forgive myself for not being able to do everything I want to do or feel like I should do.  I think most of us are harder on ourselves than on others.
  5. Most people assume: I’m not really sure, since I’m not in their heads.  I do get dirty looks when I park in a handicapped parking place, since I’m young and look “just fine.”  People I’m close to seem to assume that I’m doing fine unless I complain, and I don’t tend to complain until it’s probably too late.
  6. The hardest part about mornings is: waking up to the alarm clock.  I do much better when I can just sleep until I wake up, which is a fairly consistent time anyway.
  7. My favorite medical TV show is: It would have to be Scrubs.  The “serious” shows annoy the bejeebers out of me.
  8. A gadget I couldn’t live without is: my iced tea maker!  And my COMPUTER!  And my arthritis gloves!  And my super-wonderful, long-lasting ice packs!  And the microwave!  Hmm, I should probably stop now, huh?  🙂
  9. The hardest part about nights is: the nights I can’t sleep.  When my hands are hurting badly, they wake me up from sleep, and they’ll keep me awake if I’m not already sleeping.  The worst part of this is that they usually hurt too much to hold a book, so I’m just left there lying in the dark and thinking.
  10. Each day I take 7 pills & vitamins, plus 4 puffs on the asthma management inhaler and 4 sprays of my allergy nasal spray.  (And I know I’m not taking everything I should be.)
  11. Regarding alternative treatments I: wholeheartedly agree with the movement to call these complementary treatments.  I am very careful about herbs and other supplements, especially when I don’t know how they will interact with my medications or with my hard-to-medicate body.  Physical treatments, like massage and cranio-sacral therapy and even sitting in the hot tub, are very helpful for EDS.
  12. If I had to choose between an invisible illness or visible I would choose: You know, I’d actually stick with the invisible illness.  People say stupid enough things to us already (“But you don’t look sick!”); I can only imagine the stuff that pours out of people’s mouths when there’s an obvious illness or appliance one has to use.
  13. Regarding working and career: I am very fortunate.  I work as a software engineer, so I could do my job if I were nothing but a brain in a jar, and my employer has agreed to allow me to telecommute full-time as a reasonable accommodation to disability.
  14. People would be surprised to know: that I am a Dominican Sister, and that my experiences with illness have deeply formed and shaped my spiritual journey.
  15. The hardest thing to accept about my new reality has been: the many little losses that I’ve faced.  Because it’s so easy to dislocate or injure a joint, I’ve been afraid to go out for walks or bicycle rides on my own.  After 28 years, I am no longer able to play my flute, so I’ve had to give up my work playing for weddings and parties.  The days when I’ve had to set aside my plans to rest and tend to pain.  It seems like, as the boundaries of my life grow smaller, I end up starting the grieving process over and over, for each new little thing.
  16. Something I never thought I could do with my illness that I did was: learn to advocate for myself with doctors and with my employer.
  17. The commercials about my illness: ROFL!  WHAT commercials?!?!?
  18. Something I really miss doing since I was diagnosed is: the interaction with my co-workers at the office.  It’s hard to have as little human contact as I do, since I’m working 8 hours a day from my desk at home.
  19. It was really hard to have to give up: MUSIC!  I so very much miss playing flute.
  20. A new hobby I have taken up since my diagnosis is: hmm, I’m not really sure about this one.  I’ve tried a couple of new things, and they ended up hurting and cramping my hands.  I spend more time in prayer now, and I try to spend more time giving intentional support to others.
  21. If I could have one day of feeling normal again I would: finish unpacking after this move, get rid of all the boxes, vacuum the carpets, make a really nice meal, spend time at my favorite museum, and make some time to snuggle with my husband in bed.  Or, you know, something like that.  🙂
  22. My illness has taught me: that having a chronic condition does not make me a weak person, that it’s important to educate myself on my condition and recent research, and that every one of us is broken in some way… even me.
  23. Want to know a secret? One thing people say that gets under my skin is: “You need to…” or “If you’d just…”  Trust me, I’ve done a lot of research into my condition and into possible treatments.  I know you’re trying to help me, but you sound so condescending, and you’re not giving me credit for trying anything that has a chance of working.  If there were a magic bullet, I would use it, but there’s not.
  24. But I love it when people: offer help in small ways.  Open the door for me.  Help me carry in the groceries.  Notice when I’m struggling and give me a hand.
  25. My favorite motto, scripture, quote that gets me through tough times is: He rescued me because he delighted in me. Psalm 18:19 It’s not just that God loves us all, but that God delights in us.  I think about what it feels like when I am delighted, and I am filled with warmth knowing that someone feels that same way about me.
  26. When someone is diagnosed I’d like to tell them: you will be okay.  You will walk through the valley of the shadow of death, but you’ll come out the other side stronger.  There are more of us, and we understand.  Read the Spoon Theory, and take it to heart.  Find support anywhere you can.
  27. Something that has surprised me about living with an illness is: I’m the same person I ever was.
  28. The nicest thing someone did for me when I wasn’t feeling well was: listen to me.  And take out the garbage.  🙂
  29. I’m involved with Invisible Illness Week because: so often, those with invisible illnesses are overlook, mistrusted, or written off as drama queens. It is important to help everyone understand — even ourselves! — that we want to work, we want to contribute, we want to do things.  We’re not just lazy bums who want to lie around all day and collect disability.  Sometimes, we just need to count our spoons and rest a little more.
  30. The fact that you read this list makes me feel: all warm and mushy inside, like a bowl of mashed potatoes and gravy.  Thank you for reading all the way to the end.  Next week, I hope maybe you’ll think about those of us who are invisibly ill.  And I hope you’ll give a hand to someone – anyone – that you encounter who needs a little help.

Love and blessings to you in your journey!