Recent happenings

The last few weeks have been packed full.  There’s been some amazingly wonderful stuff… and there’s been some real crap.  I’ll start with the thanksgivings.

I’ve talked for a couple years about becoming a spiritual director, and over the last about-9-months, I became one.  I haven’t been to any classes or training.  It just sort of… happened!  My alter ego (can a Sister be an altar ego?) has had several people come to her with questions, and the relationships formed into just this model.  One is a recent convert to Christianity, who is being baptized at Easter.  Another has allowed me to witness their conversion from not believing to being willing to admit the Divine might exist to believing with all their heart.  Another lives in an abusive relationship.  All are broken, as I am.  All are a bit quirky.  All are very intelligent. All have struggled with depression. I cannot tell you the blessings I have received from this work.  I am in awe at how God can work through us, in such deep and powerful ways.  There’s a major event at my parish church in a few weeks, and I’ve donated 3 months of spiritual companion services (because I much prefer companion to director).  I hope this ministry is helpful for God’s children.

The new rector at our parish is fabulous!  He is plugged in to the Holy Spirit and actively listens for God to point him and our church to our next work for the Kingdom.  And — you’re never going to believe this! — I’ve joined the praise band for our contemporary service.  Yup, I’m playing flute with the band, and I’m having a blast doing it!  I have missed making music terribly, and I’m so glad to be able to serve the church in this way.  It’s been quite a while since I’ve played in jazz bands or done improv, so I’m stretching those skills and taking some risks.  That’s almost always a good thing.

God willing, I will take my life vows with the Anglican Dominicans this summer at Chapter.  I’ve been leading our annual online lenten retreat, on the theme of narrative, and that’s been fun.  I’m finding that our mind-heavy Aquinas-Dominicans are less interested than our more heart-oriented Eckhart-Catherine-Dominicans, but that’s okay.  A couple weeks ago, I heard our new fabulous rector refer to a certain mystic as being “pretty out there,” and shared my (very slight) offense at this with my husband later.  He asked me, “What, you mean to tell you that you aren’t pretty out there?”  I said, “Well, yeah, but he shouldn’t say that about all my fellow mystics!”  Then I laughed at the sheer ridiculousness of this, especially because I’d written a reflection just a week before about mystics and how we’re all sort of “out there.”  I can be pretty protective, but it’s weird to be protective of people (saints, even!) who have been dead for centuries.

I am joyfully living into another new ministry at the parish.  Our “family area” in the nave is in a place where you can’t see the altar, so when the children become bored because they feel excluded from the Important Adult Business — which worship should never be! — they can become noisier and annoy the Important Adults around them.  Being a rather untall person myself, I know how icky it can feel when you can’t see what’s going on.  So I now sit with all the children who want to, right in the center aisle, on the floor, where we can all see what’s happening during the Eucharistic Prayer.  I like to say that we do this because churches are short-sighted that they don’t provide sycamore trees for us, like Zaccheus climbed to see Jesus.  When I used this line with one gentleman at church, he said, “We could do that!”  We had fun exploring what it would be like to have a tree in the middle of the nave: the symbolism, the places to climb and sit, the ways we could decorate it and use it as part of our worship.  It was fun, in a totally liturgy-geeky way.

I continue to work part-time on disability, and I continue to wait for my disability claim to be approved.  It is in appeal, and the decision is due any time now.  Meanwhile, I owe about six months of child support, am perpetually a month behind on my car loan, and seem to stay about a month late on most of our other bills, too.  Some days I want to echo Teresa of Avila: God, if this is how you treat your friends, it’s no wonder you have so few of them!

On Wednesday, I had my second appointment with the new rheumatologist, who turned up an active chronic Epstein-Barr infection.  So that goes onto the diagnosis list, along with Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, Proportionate Short Stature (yeah, I’m Little), and a severe Vitamin D Deficiency.  I’ve learned some things about these conditions this week, and I’m not quite sure how I feel about it all yet.  For example, I’m finding increasing numbers of people labeling CFS as an auto-immune disorder.  I’m finding CEBV described variously as a form of CFS, a potential cause of some cases of CFS, and as a separate (but similar) disorder.  I’m learning that EBV will become active pretty frequently, but only becomes symptomatic in those whose immune systems are faulty somehow.  I’m learning that there are physical changes in the brains of PWCs (persons with CFS), a reduction in grey matter and increase in white matter — so the “brain fog” and other cognitive effects are not only real, but are based in physical matter.  This terrifies me.  I’ve learned that each recurrence of EBV infection increases one’s likelihood of developing lupus later in life.

The rheumatologist has recommended to my primary doctor that she send me to a specialist in infectious diseases, and I’m expecting to have my immune system checked out as well.  I need a new echocardiogram — these are recommended for EDSers to have annually — and a bone scan.

It’s all just so much stuff.  And oh yeah, here comes Holy Week.  Maplestar and I are ready to sleep until Ascensiontide.  I expect there’s a significant number of clergy and other Professional Christians who feel the same way.

gloria in excelsis!

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


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.

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.

an open letter to physicians, physical therapists, counselors, and anyone else who helps care for me

From my LiveJournal

Dear caregiver,

I respect you.  I really do — you’ve worked long and hard to earn the privilege (and humility) of helping those who are hurting and in need of help.  You’ve had to take specialized schooling and practical training.  You see patients all day long, and I know it can be a drain to be constantly confronted with the pain and misery of others, especially when there isn’t any way to fix it.  You have to worry about regulations, licensing, liability insurance, malpractice insurance, arcane rules of your patients’ health insurance, managing your office, filing all the paperwork, having 15-minute appointment windows to cover 30 minutes worth of care-giving, and trying not to run too late with your appointments for the day.  I get that.

I deal with a lot of stress in my job, too.  You may not realize that each person who comes to see you has his or her own drains and worries.  I’m not able to pick my children up from school because I’m coming to see you, and if we run too late, then I’m going to miss a meeting at work, as well.  I’m worrying about the balance in my Flexible Spending Account, how much my prescriptions are going to cost this month, whether my insurance company is going to deny my claims, and how I’m going to continue to work when my body just isn’t up to it any more.  As a Little Person, I am subjecting my body to all kinds of stress and pain, just by sitting in your waiting room!

Now, I have an inherited condition, and it has resulted in chronic pain.  It’s a fairly rare condition, but nowhere near as rare as your medical school textbooks made it out to be.  Because this is inherited and chronic, I know it can never be fixed, only managed.  I get that, too.  I don’t expect a magic wand or a silver bullet.  What I do expect is to be treated with respect and dignity, just as I treat you.  I expect to be listened to.  I expect to be part of the process of caring for me, not merely a passive bystander in my own care.  I don’t want to be labeled a drug-seeker or a complainer or a problem patient; I don’t even take narcotics, for God’s sake!  I expect you — as the expert and the professional in care-giving — to do some research into my condition, to learn about how it can affect people.  Believe me, I do lots of research on my own, because so often I end up having to educate my caregivers.  I shouldn’t have to do this, but I can understand it.

So here’s the deal.  I choose to come to you for care, to hire you as part of my care-giving team.  It’s a two-way street.  I, and my health insurance company, am paying you to help me.  I am, in essence, your customer.  I also give you complete honesty, open communication, and dedication to the care plan we have established and agreed to.  In return, I expect you to genuinely listen to me, to be completely honest with me — yes, even when that honesty means giving bad news — to communicate openly with me, and to discuss with me the care plan you are proposing, so that we can engage in conversation about what’s working, what’s not working, and what new or different things we might try.

You have a right to refuse to accept my business.  I understand that.  I expect that if you choose to sever our relationship, that you will honestly and openly communicate with me, rather than engaging in passive aggression or other games.  I expect that you will tell me how I have failed to meet your expectations and needs as your patient and customer.

Similarly, I have the right to refuse your service, to fire you from my care-giving team and hire someone else.  I do not choose this path lightly, because you have become my partner in caring for me, and we have developed a relationship over time.  I value that relationship, that history.  I value our partnership.  I value the honesty, communication, knowledge, experience, compassion, respect, and time that you have given to me.  But I will not tolerate a pattern of disrespect or abuse.  I will not tolerate mind games.  I will not tolerate being treated as less than a full partner and participant in my care.

Are you still interested in this position?  Can we work together?  If so, then welcome to the team!

Respectfully yours,