So.  In the last month, I’ve been to see a neurologist, neurosurgeon, geneticist, dentist (four times), oral surgeon, physiatrist, and physical therapist.  I’ve had a root canal, a molar extracted, an MRI of the brain, an MRA of the brain, and a lumbar puncture.  My Beighton score has been taken and recorded, my surgical scars have been examined, and the elasticity of my skin has been measured.  At least we finally know conclusively what’s going on with my body, and I have a Medic-Alert bracelet to tell the world.

The pain doctor yesterday was thrilled with the definitive diagnosis of Ehlers-Danlos Syndrome: Classic Type.  Her words were, When a patient like you comes to the doctor, the doctor just looks at you and thinks, No one person can possibly have so many things wrong! And I totally get that.  I’m used to doctors looking at me in disbelief, quizzing me, treating me like a drug-seeker, treating me like an internet hypochondriac.  She continued, But we know for sure now that you don’t have a problem with your ankles and your knees and your shoulders and your gut and your skin and your back.  You have a problem with your connective tissue. And she’s right.  One problem: many, many manifestations.  I should be elated.  It was nice to get high-fives and hugs at her office yesterday, but then I came home and was hurting.  Then I came home and found that I can’t play my flute for five minutes without excruciating pain.  And the grief cycle kicked in yet again, mourning for all the many future lives that I can no longer have.

The brain MRI came out normal — no Chiari Malformation, thank God — and the lumbar puncture came out normal, too.  So no pseudotumor cerebri, either.  Of course, that means that when I see the neurologist later today, she’ll be starting from scratch again on the back-of-skull headaches that don’t respond to any treatment whatsoever.  The physiatrist is back to the muscle spasm theory on those, even though the steroid/analgesic injections into my cervical vertebrae didn’t help.  I’ll see the neurosurgeon again on Monday to go over the MRA results.  I’m just glad he talks to me like I’m an intelligent, informed person, like I have the right (if not responsibility!) to be a partner in my own care.  The neurologist talks to me more like I’m completely ignorant and should remain so, except for the pearls of wisdom that she dispenses.  You may be able to tell that I have little patience for doctors like that.  It is my health, and I am going to manage it, tyvm.  I am your customer, and if you don’t satisfy me with your attitude, your service, and your treatment, then I will go elsewhere.  Okay, um, sorry, that came out a bit more ranty than I’d intended.  But still!

The paperwork for me to have a permanent handicapped parking placard is in the mail, so I should have that by the end of the month.   It is really real now: I have a disability.  I am a disabled person.  I still work full-time, as long as I can, and I try to do as much as I can… but sometimes it’s frustrating how much is beyond my limits now.  And that is occasion for mourning.  Part of the problem with EDS, as with many chronic pain conditions, is that it’s hard to predict when I’ll have a good day (or week) and when I’ll have a bad day (or week).  Yesterday, I dislocated some cervical vertebrae, my left thumb, and both elbows — all within ten minutes.  My jaw is still out of place after the root canal and the oral surgery, and my pelvis is all jacked up after the LP Monday.  I can’t wait to be able to see my physical therapist again, so he can put everything back where it belongs.  With a massive cold front stalled just to the west of us, and the beginnings of the storms over us now, every joint in my body aches.

And, with all of that, I’m snowed under at work, and I’m snowed under preparing for Christmas, and I’m just generally feeling snowed under overall.  It’s so easy to get into a pity party — I indulged in quite a massive one last night! — and can be so hard to break out of it again.  It doesn’t help to know that of course someone in my shoes would be grieving, even though I know I have many blessings all around me, or at least, it doesn’t help when the clouds descend.

Well, that’s about where I am this morning.  Everything is out of place and needs to be put back, but I’m not capable of doing that for myself.  I guess there’s quite the lesson in that for a Christian — we must count on God to put us back together, and that means that we must count on God’s hands here in this world, our brothers and sisters who are walking the journey with us.  Not one of us is alone.  We’re all in this together.  Dammit. 

So here is my prayer for all of us this morning, and hopefully it will be familiar to you.

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