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.

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,
warriormare

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!

Invisible Illness Awareness Week

2009 Invisible Illness Awareness WeekLast week, I blogged a little about Invisible Illness Awareness Week, which begins today with online conferences and hundreds of bloggers taking time today to increase awareness.

I begin this post, still unsure how I want to use it.  I don’t want to complain about the issues I struggle with, and I don’t want to take a tone of anger or frustration.   I think I’ll just start with some plain old facts, and see where that takes me.

  • My diagnosis, Ehlers-Danlos Syndrome, has a prevalence rate of about 1 in 5,000 people.  This means that about 61,000 people in the US have EDS, and about 1.4 million people in the world.
  • Fibromyalgia is experienced in about 2% of the population, which is about 6.1 million people in the US and about 140 million people worldwide.
  • The prevalence rate for Rheumatoid Arthritis is about 1% of the population, which is about 3 million people in the US and about 70 million people worldwide.
  • Regular old Osteoarthritis affects about 27 million people in the US, about 9% of the population, and is the cause of 25% of visits to primary care physicians in the US.  If that 9% rate is globally applicable, this means that about 630 million people suffer from osteoarthritis.
  • About 265,000 people in the US currently have Leukemia, with over 44,000 new cases being diagnosed each year.   Deaths from leukemia, worldwide, account for about 3% of the 7 million deaths due to all forms of cancers.
  • About 8% to 12% of all people in the world will suffer at least one episode of Major Depression during their lives (in North America, about 17%).  And contrary to what some may believe, Depression can be fatal.  On average, 3.4% of depressed people commit suicide.  So of people currently alive in the US and Canada, about 57.5 million have or will have an episode of Depression.  And of those people, 2 million will die of it.  Worldwide, about 700 million people have or will have Depression, and about 24 million of those will commit suicide.
  • The prevalence of Herpes in the US is estimated at about 1 in 5 adults, occurring in about 45 million individuals over the age of 12.
  • Prevalence of Lupus varies around the world, from 40 per 100,000 people in Europe to 159 per 100,000 people of Africa or Caribbean descent.  About 1 million people currently have Lupus in the US.
  • Nobody is quite sure what the prevalence rate is for Asperger Syndrome, but one conservative estimate places it at 0.26 per 1,000 people.  This is about 79,000 people in the US, and 1.8 million people worldwide.  One estimate at the high end is 4.84 per 1,000 people, which would be about 1.4 million people in the US, and 34 million people worldwide.  The real numbers probably lie somewhere between the two.

Those numbers are pretty huge, aren’t they?  Hundreds of millions of people in the world, millions of deaths, and this is just a small sampling of chronic, invisible illnesses.  The people who struggle with these illnesses are all around us… and we don’t know who is struggling with an invisible illness and who is not.  There are estimates that suggest nearly half of all individuals have a chronic, invisible illness, though they may not all know it or have a firm diagnosis.  Half.  One out of two.  50%.  That’s nearly 152 million people in the US, nearly 3.5 billion people in the world.  That’s why Rest Ministries sponsors Invisible Illness Awareness Week every year.  That’s why I’m blogging today.

The next time you see someone who looks just fine getting out of their car in a handicapped spot, think about these numbers.  They may be part of that almost-50% who have an invisible illness.  Instead of becoming angry and confronting them, consider these facts, and maybe try a different approach.  Perhaps it’s time to try a smile of encouragement, or maybe asking them if they need help.

The next time a family member or co-worker tells you they’re feeling bad, try thinking before you say something like But you look good today! or But you don’t look sick! Be ready to listen, without making judgments, just being fully present in the moment and hearing what they have to say.  What you hear may surprise you.

Or, perhaps, if you are the one in two who struggles with the illness, remember that you are not alone.  Struggling with the symptoms and effects of your illness does not automatically make you lazy or weak or demanding or incompetent or any of that nonsense.  It just means you have to work a little harder than the other 50% of people.  No, it’s not fair, but it’s the life we have to live.  When you need to rest, rest.  When you need medications or ice or heat or a brace or a cane or a wheelchair, use them.   And try to remember that when people say thoughtless things to us, it isn’t necessarily a sign that they don’t care about us or don’t want us to feel well.  It just means that they don’t know what to say, in the face of our struggles and pain.

Now, go check out the schedule of virtual conferences this week — I’m sure you’ll find something there for you, or for someone you love.  You’ll see these…

  • Understanding how we uniquely deal with difficulties in life
  • Finding health insurance with a pre-existing condition
  • Super foods for super-natural health
  • Hearts of gratitude and joy
  • Coping with chronic illness in your marriage
  • Coping with crises on top of chronic illness
  • How to start a business when you are chronically ill
  • It’s okay to say NO: Building healthy boundaries
  • Parenting when you are chronically ill
  • Simplifying your home and housework
  • Real talk about men and chronic illness
  • Finding the job you desire and can do
  • When your child is chronically ill
  • Managing college with a chronic illness
  • Helping others understand your pain
  • Applying and winning disability assistance when you are chronically ill
  • Being a teenager with a chronic illness
  • Surgery preparation.

That’s quite a line-up, isn’t it?  I’m looking forward to several of these seminars, and I hope you’ll listen to at least one of them.

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!

The day after bankruptcy

Here in the Eastern time zone, it is now 12:40 AM, on Wednesday, September 9.  Twelve hours ago, when it was still Tuesday, my husband and I sat in the hearing room for the bankruptcy trustee for our district.  There I affirmed the information filed on my bankruptcy petition, and I reiterated my intention to surrender my house.

This came about in part because of carelessness with money, but the root cause underlying that was increasing costs from my chronic medical condition, Ehlers-Danlos Syndrome.  I’ve written about my health care story here before, about my struggles with health insurance, about my journey to and through my diagnosis.  I’m not going to rehash this, just to repeat that not all costs of a chronic condition are paid to doctors and pharmacists; some go to pizza drivers, to manufacturers of splints or braces or assisting devices, to lawn care professionals, to house cleaners, to movers, to anyone who can do the things we aren’t always able to do for ourselves.  All costs of a chronic condition aren’t even financial, or even sometimes quantifiable.  They just are.

My husband and I spent our holiday weekend moving the last flotsam from the house to our new apartment, the things that we hadn’t managed to cram into boxes or suitcases in time for the movers to arrive.  There were brooms and mops, large pictures that hadn’t fit into boxes, lamps, little knick-knacks, pens, pencils, my winter clothes, the iron — just miscellaneous stuff.  We brought over two loads on Saturday, one on Sunday, and five on Monday.  I’d come into the weekend already exhausted, already in pain.  When my hands hurt, they hurt bad and they hurt all the time; the hands will keep me from sleeping and will wake me in the night.  On moving day two weeks ago, I sprained both wrists and an ankle; while the wrists are better, the ankle still causes pain.  My two sprained AC joints throb, and my subluxed hips and knees and ankles ache.  I can tell that every vertebral joint from the top of my neck to just below my shoulder blades is out of place, and I think the topmost two pairs of ribs are subluxed as well.  When I see my physical therapist next week, it will take him 30 to 45 minutes to put everything back where it belongs; he may miss some of them; and some will undoubtedly slip back out of place before I get home again.  When things get this consistently bad for me, it usually takes about three weeks of twice- or thrice-weekly PT visits before I’m back to normal again… or what passes for it in my body.

Tonight, I cannot sleep for the pain, even after taking my normal meds plus a prescription-strength dose of ibuprofen.  My pain management specialist and I have discussed this before.  She has EDS herself, and now seems to focus on those of us with connective tissue disorders.  She has a family about to fly over from Germany to consult with her on their daughter’s Ehlers-Danlos Syndrome, because no true specialist on this condition seeems to exist.  She has learned, as have I, that when EDSers overdo it, we can try narcotics, and we can try OTC meds, and we can try ice and heat and meditation and relaxation… but nothing will really stop the pain until we get those joints back into place.  Until we can get to our physical therapist or chiropractor or massage therapist or cranio-sacral specialist, we’re just going to hurt.

So in the dark quiet of the night, my mind started thinking.  I’m really not in a feeling sorry for myself place, much less a wallow in self-pity.  I really have come to peace with the bankruptcy, even with losing the house that was such a powerful symbol for me.  I can still be frustrated and angry about it, because we have a stupid, lousy system for caring for our citizens here in the US.  But I don’t feel the helplessness, the sense of failure, the sense of loss and grief that I felt before setting foot on this path.  I know that a bright future lies before us, in our new home, in our new marriage, in our new start without the huge debts.  The Master of the Anglican Dominicans suggested to me that I head out to First Landing State Park, to Fort Story where the people who settled in Jamestown first set foot on this continent.  And she invited me to stand on those beaches, to look out over the waters, and to reflect on those who left everything behind (or who had already lost everything) to make the dangerous voyage from England.  Even tonight, lying in the dark quiet, this was a powerful reflection.

This post wasn’t intended to be a bitchfest, more like the semi-lucid ramblings of a mind that belongs to a body that refuses to let it sleep.  [QUICK UPDATE: I figured out, after turning off the computer and going back to bed, just why I was writing this post.  It was to burn off excess mental energy, so I could get back to sleep.  Thankfully, it worked!] So… some more randomness for you.

When my hands hurt really bad, it’s completely invisible to an onlooker, except for how I will cradle them or rub them.  But when they hurt like this, they feel from the inside like they should appear all swollen, to the size of baseball mitts.  They feel big and bulky and clumsy, and then I look at them, and the traitorous things look perfectly normal.  Sometimes, when the pain is really bad in the metacarpals, I will wonder whether they will ever erupt into full-fledged stigmata, and then I think it would be nice to have some external sign of the invisible pain I experience.

Last week, when I saw my physical therapist, he worked on me for about a half hour, putting back into place the joints that had subluxed during packing and moving.  After I told him how maplestar had commented on wishing he could be a fly on the wall, to hear the therapist lecture me, and while the therapist had his thumbs deep into a really crunchy trigger point, he said to me At this point, I don’t think any lecture I could give would make more of a difference to you than what you’re feeling right now.  He was right, too, dammitall.  Then he related a story about another EDS patient he’d just seen, who had spent hours working on her garden over the weekend only to come creeping into his office in terrible pain.  She had been trying to prove to herself that she could still do this stuff.  I hadn’t been doing that; I’d just been trying to do the work I had to do, because sometimes that’s just what’s necessary.

One of the things that stinks about having Ehlers-Danlos Syndrome is that EDS patients have to become — and remain — highly educated on our condition, on the many effects it can have on our bodies, and on the latest research.  We can guarantee that at any point in time, we patients will probably be more knowledgeable about our condition than any of our doctors, dentists, or other caregivers.  There are other real zebra conditions out there that are similar, the ones where med school professors tell soon-to-be doctors, Oh, you don’t need to study this one; it’s so rare that you’ll never see it.  And then, out of the blue, one of us zebras shows up in your office, holding our brochures from the EDNF, with printouts from the web, with letters from our geneticist or our physical therapist.  Or we’ll show up in your emergency room, and you won’t be able to find any real cause for our pain (“Your x-rays look okay, and you have normal range of motion” — normal, ha!), and you will dismiss us as drug seekers, telling us to take ibuprofen or acetaminophen.  You’ll order X-rays and MRIs and CT scans, and you’ll study them and come away baffled; you’ll refer us to other specialists, and we’ll see more doctors in more specialties within a year than anyone ever should; and after all of this, we may or may not come out with the right diagnosis.  You will look at our charts and think, nobody can possibly have this much wrong with them!, without stopping to consider that maybe there’s only one thing wrong, one pattern hiding behind all the symptoms.  And it’s not your fault, because they told you in medical school not to bother with EDS, because it’s so rare that you’ll never see it.

Another fun part is Raynaud’s Syndrome, secondary to EDS, where my body has trouble maintaining its temperature properly.  My body temperature regularly runs about 1 to 1.5 degrees F lower than normal; that normal is also the typical body temperature curve, which is lower during sleep and higher in the afternoons and evenings.  I feel hot almost all the time, to where I want a fan blowing on me, or I start taking off shoes and layers of clothes, or where I try to hide an inward wince at the thought of hugging the people I love because of their sheer body heat.  And yet, to all of these people, my body feels cold.  My son remarked on this recently, told me he was worried about me because I always feel cold to him; my husband has said something about this, too, as I’ve kicked the bedsheets off of me and aimed the fan right at my exposed skin to get some relief.

I remember last December, the day my handicapped parking placard arrived in the mail.  There it was, proof that in the government’s eyes, I am permanently disabled.  To the bankruptcy hearing today, I wore arthritis gloves and walked with my cane.  We had to walk two blocks from the parking garage to the federal building.  It was a tough effort, and I was really glad we got there early enough to recover from it.  I knew that this was coming — I’d asked for the parking placard! — and yet, the reality of holding it in my hand, seeing my name on it with those words permanent and disabled, this made me weep that day.

I’ve also learned that people with invisible disabilities are not always treated kindly when we use our handicapped placards.  Sometimes I find myself affecting a slight limp, if people see me parking and walking into the store.  If it’s 7am, I might be doing pretty well, and I might walk all right; the problem is, if I’m not gentle enough with my body, then it won’t last until 4pm or 7pm.  Not all disabilities show on the outside, and we humans can be terrible at passing judgment.  I was horrified recently to read the transcript of a live internet chat where participants talked with glee and pride about using their dead grandmother’s handicapped placard — or even a stolen one! — without a single thought or care for those of us they are harming in this way.  It is because of that kind of dishonesty that the invisibly ill are treated with contempt, are sneered at when we try to take care of our bodies.

Don’t even get me started on the “If you’d just…” folks, either.  If you’d just try this herb… if you’d just try this vitamin… if you’d just lose some weight… if you’d just gain some weight… if you’d just see this one specialist… if you’d just eat better… if you’d just try this special exercise regimen… if you just prayed harder… if you actually believed you could get better…  Well, I’ll tell you.  If you’d just shut up already, I could maybe tell you what I’ve already tried, or what I’m allergic to, or what my body is remotely capable of.  I could maybe tell you about my struggle, my journey from doctor to doctor and from wrong diagnosis to wrong diagnosis.  We could maybe have a discussion.  If you’d just stop talking, stop insulting me with your assumptions, and listen for a while.  Or, you know, maybe not.

Uh oh… I ended up ranting a bit there, didn’t I?

Well, there’s a sweet grey kitty at my feet, and I think she wants to snuggle up with me on the bed.  I guess I’ll find a new mind-candy novel, because my brain isn’t up to Pére Teilhard de Chardin right now.  I’ll stop bending your ear — if you’ve even made it this far — and seek rest, once again.

And tonight, as I do every night, I’ll wish you a blessing.

The Lord bless you and keep you.
The Lord make his face to shine upon you
and be gracious unto you.
The Lord lift up the light of his countenance upon you

and give you peace.

Amen.