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A mixed bag

warriormare — Thu, 21 Aug 2008 20:05:13 +0000

So I'm awake from probably the best, most refreshing, most renewing, most rebuilding nap I've ever had. It lasted about an hour, after I listened to a guided meditation/relaxation CD. Of course, I'll take any sleep I can get right now, because I am sleeping each night until about 1:30am, and then tossing and turning, rolling and writing, drowsing and waking until the alarm goes off at 6. It doesn't matter whether I take one trazodone or two or none at all, and it doesn't matter whether I take one darvocet or two or none at all. It doesn't matter whether I go to sleep at 7:30, 8, 9, or 11. Every night I wake at 1:30 in PAIN, and spend the time until the alarm goes off frustrated. Tonight, I'll try a different strategy. Tonight, if that happens, I'll put on that CD again, and see if it helps me get to the place of peace and rest, so that I can get through the night.

I went to physical therapy this morning, for the first time since February. I was trying not to feel too hopeful, knowing that he couldn't "fix" me this morning - even if the pain were only in one place instead of all over my body. I was feeling more than a bit fearful - would he be able to give me any relief at all, even over the long term? would I need more surgery? would the PT make everything hurt MORE? - and also more than a bit frustrated, feeling like the pain doctor isn't really hearing me when I say that more places hurt than just my neck, and hurt a lot worse than my neck, too. I find it hard to advocate for myself with her, without coming across like I'm complaining and whining. Because, of course I'm complaining - my body HURTS!!!

So I brought a tool with me to the physical therapist. Yesterday I laid out a table in Excel, with every part of my body from toes to crown along the top, and all the activities I normally perform along the left; in the intersections, I filled in B for "this activity makes the pain better" or W for "this activity makes the pain worse" or N for "neutral - this activity has no effect on the pain." I used color-coding, and even included a bunch of neutral-to-better and neutral-to-worse items, for ones that are kind of borderline. So when he asked me the question, "What makes the pain worse?" I had a visual aid to show him. He goggled at the chart, then laughed and said, "This is so YOU!" Well, I knew it was. But at least I had something more concrete to show him than just, yeah this hurts and this hurts and this hurts.....

The funniest thing is, he had to tell me my boobs are too big. (Okay, I'll wait while you try to settle yourself down. It's okay - it IS funny! I can see the humor in it, too, except when it f*cking hurts!) He was so gentle about it, standing behind me and telling me he didn't want to embarrass me but I had some definite disadvantages. But, yeah, they pull everything forward, all the time. I would LOVE to have them de-embiggened. Would LOVE it! Every time I have lost weight - including the 50 pounds over 9 months - the boobs have stayed absolutely the same. They never do anything but (a) stay the same, or (b) get bigger. Stupid chest! No wonder they call them boobs. Of course, this is disheartening, because there's really not a lot I can do to make them smaller. Yes, I can have breast reduction surgery. Can you just see me in my office - surrounded by (MALE) engineers - calling the insurance company to argue and wrangle with them over it? So we're going to work on strengthening the core and lots of little stabilizer muscles all over, to try to help my poor body hold those damned boobs without hurting. Sheesh.

After PT, I drove down to my lawyer's office to deliver and sign some paperwork, and then explored one of my favorite "alternative" stores to pick up some new supplements - ditching the multivitamin and focusing in on the vitamins and minerals I really need, especially mega-doses of C - and to just soak in the atmosphere.

Then I thought I remembered that the Thursday healing service at my parish was at noon, so I boogied down there only to find the church empty and quiet. It turns out that the service is at 10am, with a bible study following at 11, and I'd completely missed it due to my faulty memory. I didn't realize quite how badly I needed that healing and eucharist until it turned out it was completely unavailable to me. Last Sunday, I skipped out of church after the sermon because my body just couldn't handle sitting in the pew any longer, so I missed partaking of the Body and Blood.

So I came home and pretty much fell apart. I felt full of fear, frustration, hurt, anger. Every part of me ached and throbbed and stabbed and pulsed. And I am so TIRED of feeling that way. I know I'm depressed. All the things that come along with the physical pain have taken their toll, and a mild depression is blooming into something bigger. I've put a call in to the pain doc to ask about increasing my anti-depressant, but the literature says that I'm already at the maximum therapeutic dose. I may need to switch back to the one that saved me last time. I just hope and pray and wish and dream and hope and pray some more that I don't have to resort to anti-psychotics again. Those meds... well, they stole my heart and soul. They leeched every bit of color and creativity from my world. That may sound dramatic, but it was incredible how much the anti-psychotic meds took from me, and even more incredible how I didn't realize this until I'd been off of them for a few months and rediscovered all those parts of myself that had been set free.

And then I took my pain med, and I got out my ice pack, and I put some aromatherapy oil in my oil armer, and I lay down in bed, and I put on the guided relaxation CD. And after the guided meditation, I drifted peacefully off to sleep, my little kitten asleep on my chest.

I'm so thankful for the people in my life who care for me and who care about me. I'm thankful for the medications that are helping me, and I'm thankful for tools like meditation CDs and pain management books that help me find relief. And I'm thankful for maplestar, who is incredibly patient and loving when I get into the dark places.

A little off all day

warriormare — Wed, 13 Aug 2008 00:42:20 +0000

Yes, it's another pain post. You can just skip to the next in your Google Reader if you don't feel like sticking around. But if you do, pull up a chair - or a couch, if you'd rather lie down! - and have a cup of tea. Despite the August heat, I feel like wearing nice, snuggly footie pajamas, drinking a cinnamon tea, and musing while I look out the windows.

I've been a little off all day. This morning started fine - much better than yesterday, when I had to muster every scrap of strength I had to get out of bed and to the potty, and then waited to catch my breath before covering those twenty-some feet back to the bed again. It was another twenty minutes before I had the strength to hold the phone up to my head to tell maplestar not to expect my customary driving-to-work phone call, because I was going back to sleep. And sleep I did, for two more hours. When I woke, I hurt ALL over, and I couldn't figure out why, because I really kept a fairly slow and even pace all weekend. But today, though I didn't exactly spring out of bed, I did get up (mostly) willingly when my radio came on at 6, and my hot shower felt exquisitely wonderful.

At work, I got an email from the concert band I tried to play with last year, testing the email list before the new season starts in a couple weeks. Alas, I had trouble because the chairs were too high for my 4'9" frame, and the flute is quite literally a pain in the neck. But now... I can't even play my flute for fifteen minutes, much less make it through a two-hour rehearsal on a too-tall chair. I might be able to play piccolo, if I had a chair the right height for me. But I'd also have a 45-minute drive each way to rehearsals, on Sunday nights. That's probably a day's worth of spoons right there. So I wrote back to him, apologizing and saying that my illness doesn't allow me to play with the band any more. As I sat back in my chair, looking at the words before hitting Send, my eyes clouded with tears, and I clicked the button before I could have a second thought. I know it's not realistic to play with the band any more. Maybe in a few years... but maybe not. The thing is, I've played flute since I was 8 years old. Think about yourself for a moment - how many things do you have that you've strongly identified with since you were eight years old? It's probably not very many. I can tick them off on one hand - girl, my parents' child, sister of my sister, lover of books, flutist - and that last one is fading away from me. Yes, I still love music. I could never live without being able to listen to music, to sing music, to create music. I didn't know what a blow it would be to me to send that one email.

So I've been rather thoughtful since then. I've recognized that I'm definitely in a time of grieving, and I have to tell you, grieving sucks. Sue at InnerDorothy wrote back in June about how it feels strange to mourn for one's future. There are so many little things that I find to mourn. I sat in the conference room today for a couple hours for an all-hands meeting with our program manager, the VP who is his boss, and the president of our division at work. I didn't think to bring my own chair in, but a couple hours in a "normal" chair made me absolutely miserable. After everything broke up, I knew my boss would be schmoozing and hosting with the bigwigs for a while, so I went and lay down on the floor of his office for a little bit, to try to relax some of the spasming muscles and stabbing, throbbing joints. I was focused on breathing and progressively relaxing when he came back in, and I apologized and got back up off the floor and went back to my cubicle. Lying down definitely helped, though the floor rather sucked, and I felt physically better as I got back to work. Aches and throbs returned, though, and I left as soon as I hit my eight hours for the day.

It hurts me to hold a pen or pencil and write now. I love to keep a written journal, but my hand cramps within a few lines and I have to rest it. If I were going to write two pages each morning in my journal, it would take over an hour. I used to send maplestar a handwritten letter every Friday, usually about four pages inside a card, but now I just... can't. I still send a card with some writing inside now and then, but my hands just don't allow me to write very much any more.

I love to read, but it hurts to hold up books. And while I do have a couple of devices to make it easier to sit up and read - but for the whole feet reaching the floor thing - but I most love to read in bed, to unwind and relax until I'm sleepy rather than merely (merely - HA!) tired. When I read in bed, though, my neck and shoulders cramp, and my hand and wrist tighten and cramp from holding the book. Even when I shift position frequently, I still end up paying for it.

And though I definitely complain about it, I actually do like to mow the lawn. But it's not even work talking about going there.

Some days, it just feels like my brain should just be wired straight into the computer, because the rest of my body is too difficult to deal with.

So I'm mourning that. Mourning all the things I want to do, but that are too costly for me to do any more. There is a real sense of loss there, even though the loss is my hopes, my wishes, my dreams, my future. Of course, it's my present, too, as I see the light bulbs that need to be changed, the sink full of dishes, the greasy pan on the stove, the weeds almost a foot high in my back yard, the laundry baskets full of clothes that need to be hung on six-foot-high bars (remember that 4'9" part?).

Perhaps one of the ways God can work in me to redeem this awful illness is to help me find my contemplative. I'm always so active, and I have a hard time just being. I'm definitely a Martha person, rather than a Mary. But I'm being forced to be Mary, though the Martha inside me cringes at all the work undone. But I don't know. I don't know when - if ever - I'll know what lights of redemption I will find through this journey. I just know that God is at work, that God is present, that God loves me more than my wildest imaginings, even when I tell God off for letting this happen to me.

God's peace be upon you, my friends. May you imagine your wildest imaginings, your biggest and boldest and most audacious imaginings - and know that God loves you wilder and bigger and bolder and, um, audaciouser than those. May you be blessed with sleep tonight, and may God's light shine on you to light your path in the morning.

EDS Alert Newsletter No. 27

edsalert — Tue, 12 Aug 2008 05:46:39 +0000

Video
• Video: ABC News: Denied: Fighting For Insurance Coverage(-)
• Video: Ehlers Danlos Video
• Video: Elastic People

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This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

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Dr. Diana Driscoll Speaks at the Ehlers-Danlos National Foundation Meeting

RAD — Mon, 11 Aug 2008 05:01:34 +0000

Dr. Diana Driscoll spoke to doctors and patients at the Ehlers-Danlos National Foundation Meeting (EDNF) in Houston, Texas August 1st and 2nd. Her topic was "Your Eyes and Ehlers-Danlos Syndrome". Dr. Driscoll, herself is an Ehlers-Danlos Patient, therefore her lecture extended beyond the ocular effects of Ehlers-Danlos Syndrome (EDS) and included some of the treatments and techniques that she has found to have increased her functionality.

The National EDNF Meeting is held every other year and is presented as an opportunity for patients with EDS, doctors and researchers to unite in their quest for answers to this debilitating condition.

Ehlers-Danlos affects multiple body systems requiring a multidisciplinary team of doctors to assist patients. Physicians of many specialties were present as speakers, patients and attendees.

About Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is an inherited connective tissue disorder affecting our body's production of collagen used to make connective tissue. Connective tissue is the glue that holds our body together making up approximately 80% of our body weight. The most common symptoms of EDS affect the joints and skin.

Skin symptoms are characterized by thin, soft, velvety skin that bruises easily and stretches. Tearing of the skin is common along with slow wound healing. Scars are often look like "cigarette paper".

Joint symptoms include hyperextensible joints (joints that extend beyond their normal range of motion). People with hyperextensible joints have often been called "double jointed". Because the ligaments and tendons are "stretchy" the joints dislocate or become subluxated easily. The premature onset of osteoarthritis is common and is often difficult to identify in an X-ray.

Some of the more common ocular symptoms of EDS are keratoconus, angioid streaks, and myopia. EDS patients are not candidates for LASIK. At Total Eye Care we are keenly aware of the potential complication that can result from any corneal surgeries performed on Ehlers-Danlos patients.

One of the most debilitating complications of EDS is a type of dysautonomia called Postural Orthostatic Tachycardia Syndrome or POTS. Dysautonomia is the result of our autonomic nervous system ceasing to function properly. Our autonomic nervous system regulates functions that our body does automatically such as digestion, breathing, heart rate, blood pressure, body temperature, blood sugar regulation, hormonal/endocrine imbalances and our sleep cycle.

Postural Orthostatic Tachycardia causes a person's heart to race when they stand still. When a normal person stands, their heart rate may go up a few beats per minute and stabilize. A POTS patient's heart rate will go up over 30 beats per minute. If their body can not compensate, a POTS patient will often faint or shake uncontrollably. A tilt table is used to test for POTS.

It is estimated that 40% to 70% of EDS patients suffer from POTS. Many patients with POTS don’t know that they have EDS and are often mis-diagnosed with fibromyalgia or chronic fatigue syndrome. It is thought that autonomic dysfunction is caused by instability of the cervical spine thus interfering with the brain stem's ability to regulate our bodies.

The classification system for Ehlers-Danlos Syndrome consists of 6 types; Classical, Hypermobile, Vascular, Kyphoscoliosis, Arthrochalasia, Dermatosparaxis. The prevalence of EDS is approximately 1 in 3000. EDS affects both males and females and is not specific regarding race or ethnicity.

Ehlers-Danlos Syndrome is a genetic disorder, however many patients, such as Dr. Driscoll, are unaffected until the symptoms are triggered by a virus.

A copy of the lecture slides for "Your Eyes and Ehlers-Danlos Syndrome" is available in PDF form as is a handout for patients to give to their eye doctor before their eye exam.

This entry has been cross posted on The Total Eye Care Website.

I'm running out of things to do...

warriormare — Thu, 07 Aug 2008 00:42:56 +0000

... so I might cry.

My beloved maplestar returned home to Canada today, after a monthlong visit with me. It was the perfect month, full of active times and rest times, prolo sessions and recovery, road trips and a dinner party, times with my kids here and times when it was just the two of us, even a week when he was taking part in a conference and I was on travel for my job. And now it's over.

Last night, the rector of my parish stopped by for a little over an hour for a talk about our plans for marrying next year. It was a very good talk, both about our individual stories, our story together, and the story of this month. Maplestar and I seem to be in a very healthy place, and while we both have some inner work to do - of course, there is always inner work to do! - we are doing well for ourselves and for each other. And we both know now, beyond a shadow of a doubt, that what we have is real and good and forever. We both had noticed the coincidences of our meeting online and falling out of touch and meeting again, as well as the breadth of our shared and individual interests. We both had cared for, supported, and prayed each other through some really tough times and some really joyous times. We had come to the realization that God had brought us together, and that bond is precious and sacred to us. This was not an easy month. We definitely had some bumps in the road, but we hurdled those together, as partners. Even when we are in conflict, we are still we and not him and me - and I'll be the first to admit that based on my prior relationship experience, I sometimes have a hard time recognizing when we're even having a conflict!

The kids went home with their dad last night, after I'd said good-night to them and gone to bed under the influence of a cocktail of medications, and now they're away on a trip to Texas to visit their aunt and uncle and baby cousin. The house feels so empty and quiet now. I'm here, and my beloved conure Trillian, and Her Majesty, the Queen of Drama, and the Lady Midnight, Empress of Everything, and the rascally little Esther Gabriel Kittenpants. But all I hear right now are the clicks of my keyboard, the hum of the cooling fan, the whoosh of the air conditioner.

I prayed Evening Prayer, using the Tallis Canon for the Phos Hilaron and my Anglican Chant Psalter for tonight's psalms. St. Francis of Asisi said, when you sing, you pray twice, and he was definitely telling the truth. Somehow, even when you're caught up in getting the words and the notes right, the prayer goes through you by a different path than when you read the words out loud, or even pray them silently. Last week while I was traveling, I re-started the discipline of praying the morning and evening offices each day. It is funny how I know I love them, need them, crave them... and then somehow or other, will fall out of the practice of praying them. Evening Prayer tends to fall by the wayside first, with all the busy-ness that comes after getting home from work, checking the mail and the messages, helping with homework, preparing and serving supper, tending to the beasties. It's so very easy to put off that office until... oops! it's bedtime now, and I forgot Evening Prayer! Even when I was unemployed and praying the fourfold daily office, there were plenty of days I wound up praying a combined Evening Prayer and Compline, in the quiet after the rest of the family had gone to bed.

I'm hurting tonight, too. Because I was taking maplestar to the airport around 12:30 today, and I wanted and needed to be fully alert for that, I held off on my morning meds until I got back home from the airport. My evening meds will include the prescribed double dose of darvocet, because the pain has been building all afternoon. Stress based? Partially, I'm sure. And I continue to be amazed by the amount of heat my body puts off when it's hurting. You could run a hand over my skin and tell exactly where the pain is worst by the intensity of the heat. I made my physical therapy appointment, and I looked around some more and made some phone calls to try to find a local support group for people who struggle with chronic pain. I found a couple, but the phone numbers and email addresses associated with them seem to be dead now. Meanwhile, I left messages with my former therapist, with my daughter's counselor, and with the rector at my parish. If I come up empty-handed, I'll try to get a group started that meets at my parish, since it is conveniently located right next to a hospital. It would be a great ministry for the church, and a great outreach to the community.

I signed up to take Hebrew I "for personal enrichment" tonight, at Gordon-Conwell Theological Seminary. I know a lady who has earned an MDiv from them, by distance-learning and classroom education in Massachusetts, and recommended them for flexibility and support. If this semester course goes well, if I'm comfortable with the school and the faculty, if I do okay with the discipline of a mostly self-paced distance class, then I will sign up for Hebrew II (and most likely Greek I and II, maybe their Old Testament and New Testament survey courses) for credit. Their North Carolina campus offers a certificate in biblical studies, which is not a full Master's degree, but would be a nice thing to work for and to have. I've also moved from the general to the specific in my ongoing work of listening for God's voice and discerning what I'm hearing. I'll have more to say on that subject in the future, but prayers for a listening heart and a wise, discerning mind would definitely be welcome.

Well, I've kept myself mostly occupied for almost six hours now. Soon enough, I'll be out of things I can do to distract myself from the quietness in the house, from the feelings of emptiness and isolation. The first night after maplestar and I have visited and parted is always the hardest, and then somehow we manage to pick up our routines again. His full cycle will start up in a couple weeks again; with the new school year, he'll have piano students, and church choir, and accompanying work. I'll have my daughter back in a week or so, and time with both kids as they begin their school year as well. I'll have physical therapy, and maybe chronic pain support group meetings. As always, I have church, and soon I'll have Sunday school discussion group facilitation. There will be plenty of stuff to fill up the time... but not tonight. Tonight, I have only myself, my pets, my quiet house, my pain.

There's nothing wrong with the house being quiet and empty - there are always times when I wish everybody else would just go away and leave me alone. Of course, the problem with that is, sometimes, you get that wish, and then you have to live with it.

Good night, my friends.

May 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.

Keep watch, dear Lord,
with those who work
and watch
and weep this night,
and give your angels charge
over those who sleep.
Tend the sick, Lord Christ;
give rest to the weary;
bless the dying;
soothe the suffering;
pity the afflicted;
shield the joyous,
and all for your love's sake.
Amen.

Pain and Recovery

warriormare — Tue, 05 Aug 2008 12:55:41 +0000

Yesterday morning was the third and final session in this series of prolotherapy treatments for my neck (cervical facet joints). Due to Ehlers-Danlos Syndrome (Type III), the joints in and between vertebrae in my neck - and probably along all of my spinal column - are hypermobile, which can result in muscle spasms anywhere from the back of my skull, along the sides of my neck, down to my shoulders, and across my upper back. The idea behind prolotherapy is that the irritants injected into the joints will stimulate the body's own healing process, which makes the ligaments tighter, so that the joints are less mobile... hopefully to the point where they are merely mobile rather than hypermobile.

I have to admit, though, that this first series of prolo doesn't seem to have changed a whole lot yet. If I miss a dose of my muscle relaxants (skelaxin during the day and flexeril at night), then I pay for it for the rest of the day and all of the next. The prolo treatments seem to give me a couple days of increased stiffness around my neck and shoulders, followed by a couple of pretty good days... and then I return to the same old spasms and pain. We're hoping that this final treatment will result in some relief from the pain, because my body needs a break from being held in a state of constant inflammation for the last seven weeks. In the meantime, we'll have to decide which joints to go after next, and I'll have to think about having to shell out $550 per treatment. Right now, I'll admit that the $1,650 I've spent this summer for the privilege of having all those needles stuck into the back of my neck isn't seeming to be worth it, but I'm trying to keep my mind and heart open.

There are some aspects of chronic pain that I'd found myself unprepared for. It is hard to describe the toll that it takes on you to never find relief, to not remember what it felt like to be free of pain, to wonder what it would be like to have a single day of respite and fun without having to worry about paying the price for it later. Everything I undertake has a price, and that cost comes in pain, in enforced rest, in having to take additional, stronger meds for the breakthrough pain, in losing work, in losing sleep. If I watch a movie at night and go to bed late, I hurt more the next morning. If I mow the lawn, I hurt more the next day. If I take a plane trip to a week of meetings with my coworkers, I hurt more while I'm there, and I'm miserable when I get home. There have been several times in the last few days when I've just wanted to cry, not so much from the pain itself, but from the frustration and drain of its persistency and constancy.

Back ten years ago, when I was struggling with severe depression, I asked over and over, God, why me? A therapist turned the question around on me, in a way that was powerful even though I resented it: Why not you? He had a point. Everyone has a struggle, everyone has some form of pain or suffering. One person's may be rheumatoid arthritis; another may struggle with alcoholism; another lost her legs in a car accident; mine, at the time, was depression. Today, mine is EDS, which is invisible just like depression is, but still has measurable effects on me. I guess it is a measure of my growth in the last ten years, but I have not found myself asking why me? this time. I have asked God simply why?, but I don't know whether any human can really know or understand the answer to this question.

Right now, I'm experiencing pain in every part of my body. Did you know that your toes have knuckles, too? Or that the knuckle joints at the base of your fingers could hurt? How on earth do you rest your hip and sacro-iliac joints, so that they are completely neutral? It amazes me, sometimes, how many different places I can feel the pain. I know that both of my elbows have subluxed, as well as both wrists, both shoulders, and something in the hip/SI region on both sides as well. My ankles and knees are aching, and may be out of place as well. Thankfully, my doctor wrote an order yesterday for me to see my physical therapist again, a couple times a month, so that he can put all my joints back into place on a regular basis. We are both hoping that this will keep the worst of the pain down and help us avoid complications and aggravations from a joint being subluxed for a long time.

In addition to icing my neck and back, I'm wearing my wrist splints again and thinking about ordering ring splints for my fingers. I wish I had more of the long-lasting cold packs - I have two that the surgical center gave me after my rotator cuff repair last summer, and they stay cold for about eight hours each. Of course, the sleeve for them is designed for the shoulder, and doesn't work quite as well for other body parts, in terms of being able to attach the ice pack and leave it alone for a couple hours without having to adjust it. But I'll look for some other solutions, and see what I can find.

In the meantime, I would like to find someone to help me with some of the cognitive and emotional aspects of the chronic pain, to help me find techniques to settle my thoughts and feelings when I become frustrated or even despondent. I have a therapist I've worked with before, and I'll probably call him first, but I don't know how much he knows about the cognitive and emotional and spiritual aspects of pain. Of course, this is just one more time commitment, one more thing to take me away from work and home... and one more monetary cost from this disorder, along with the prescriptions, the copayments, the prolotherapy that is not covered by insurance, the ice packs, the splints and wraps, the ergonomic devices.

Ah well. I'm sore, and I'm sleepy now from my meds, so I need to take a nap. Yes, a nap, barely two and a half hours after getting up. But that's how this goes sometimes.

Today, I am grateful for ice packs and pain relievers, and the support of those who care for me. Be at peace, my friends.

Transfiguration

warriormare — Sun, 03 Aug 2008 22:36:29 +0000

This coming Wednesday may be my favorite Feast of the church year: the Transfiguration of Jesus. The story is an amazing one, the grandfather of all mountaintop experiences, as Jesus took Peter and James and John to the top of the mountain with him where his appearance and clothing were transfigured in front of them. The lectionary uses the account from the gospel of Luke, which may be the most detailed from the synoptic gospels.

This story tells us that this was about eight days after Jesus foretold his death and resurrection and that Jesus and Moses and Elijah were speaking of his departure. I can only imagine the contrast between this gorgeous, beautiful, powerful mountaintop experience - being up there with Jesus, who you know to be the savior, and Moses, who brought the law to your people, and Elijah, the greatest of the prophets - and then the realization that you do not have much more time with Jesus, that he really is going to die and leave you... and soon. You see the cloud gather, and hear God speak to you and scold you, and then you are left alone with Jesus again, in silence. Every year, I try to imagine the parts of the story that didn't make it into the gospel - how long did they all sit up there on top of the mountain in silence, before starting back down? What was that trudge back down the mountain like? Was it companionable or awkward? Did they speak and sing, or were their footfalls the only sounds to break the silence? What happened when they rejoined the rest of the disciples? Were there lots of questions? What did they tell their friends, the people they lived and traveled with, after Jesus asked them to remain silent?

Last year, I wrote a story about the walk down the mountain, told from the point of view of young John. In the story, all three disciples were unsure what to think, and they walked in awkward, uncomfortable silence until Jesus broke it with words. And I wrote another story, about a teenaged girl who found her heart transfigured at the top of a mountain. I was full of awe and wonder, imagining the Transfiguration and what it would have looked like, sounded like, felt like. This is a story, I believe, that we are called to engage with, to dive into and try to experience with all our senses. Some of us are able to immerse ourselves into that place of active imagination, and others of us need to be guided along the way. But there are so many revelations waiting for us in scripture, if we allow ourselves to soak in the words, to reflect and contemplate, to practice lectio divina or some other method for engaging with the word.

Today, this Sunday, I almost decided to stay home from church. But it is the last Sunday of maplestar's visit from Canada, so I went for his sake, knowing how powerful it can be to simply bother to show up when I don't really feel like it. We had a quick breakfast on the way, and got to the church comfortably before the service began. During the opening hymn, the pain started - I've had incredible pain in my entire body since last Monday's flight to Minnesota; it hasn't gone below about 7 out of 10 in a week now - and I had to set aside my hymnal because my hands hurt too much to hold it. Sitting down was fine... for a few minutes, and then my hips and ankles and back and hands and neck started spasming and stabbing. Standing up would give relief for a moment, and then the pain would start in again. By the start of the sermon, I was in tears. By the start of the eucharistic prayer, I knew that if I wanted to be able to drive home, I wasn't going to be able to go up to the rail. The rector glanced up at me a couple times, as if weighing what he should do, but decided to let things be unless he got a request. After the closing hymn, I sat back down to listen to the organ postlude, and whispered into maplestar's ear a request that he ask the rector if he could please communicate me from the reserved elements. As the crowd thinned out at the rear of the nave, I heard the rector's voice agreeing happily and wondering how I was doing. He checked in on me first, then gathered the bread and a little wine, communicated me, and then laid his hands on my head to pray for me and bless me. I really needed to take part in the Feast today, with my third - and final, for this series - session of prolotherapy tomorrow morning, and maplestar's departure scheduled for Wednesday, yes, the Feast of the Transfiguration. Then both men helped me to stand, and I hobbled back out to my car to drive home, where I took my last darvocet and lay down to rest horizontally.

When I read the collect for the Transfiguration, one line in particular sang out for me:

Mercifully grant that we,
being delivered from the disquietude of this world,
may by faith behold
the King in his beauty.

Our prayer on this day is to help us to set aside the disquietude - to ascend to a quiet place - where we are able to behold Jesus in his white, glistening raiment, and know that we, too, are the Beloved, the Chosen, of God. It can be so difficult to pull away from the disquietude of this world. We have to find those quiet places, and not all of them are so obvious as the summit of an isolated mountain. Some of those quiet places may be libraries or bookstores, may be beautiful parks or forests, may be desert or jungle, may be churches or synagogues or mosques. Some of them may be within ourselves. And it is those places of quiet where we can meet Jesus, arrayed in glory, infused with light, surrounded by the communion of saints.

Then, once we have beheld Christ in this way, it is time to say farewell to that place of quiet, of contemplation, of glory, of holiness, of change, and to return to the physical world again. But on that journey back to the world, on that strange walk down the mountain, we have to move from quiet into speech, from holding secrets to finding the right times to reveal them, from a place of absolute holiness into a flawed and broken world.

Up on the mountain, Jesus learned what was going to happen to him in the next days, about his capture and arrest, his interrogation, his beating and crucifixion, his death and burial. We may learn very difficult things on those mountaintops, when we are delivered from the disquietude of this world, and we need that walk back to this world to begin to take those things in. And once we have, the morning star shall rise in our hearts, and we will become, as Peter says, that lamp shining in a dark place. People who know themselves and the very deepest truths about their lives do indeed shine like a light in the dark.

Today, at church, I was definitely in a place of disquietude, even in the midst of my brothers and sisters at a parish I know to be my home. But once the service ended, in the elements of holy communion, the rector of the parish helped deliver me to one of those quiet places, and I beheld God in his eyes and in maplestar's. It lasted for a short moment, but I know that it happened. And perhaps, when I'm in the worst of the pain, I can hold on to that memory, that knowledge, and bring the shining light of Jesus - found in the eyes of those who helped me as Jesus helped all he met - back into the forefront, where it can deliver me from the disquietude again.

Beloved friends, I hope that you will find those places of quiet, that you will be able to behold God in God's beauty. And I wish you a glorious, blessed Feast of the Transfiguration.

Dr. Diana Driscoll To Speak Before the Ehlers-Danlos National Foundation National Meeting

RAD — Thu, 03 Jul 2008 10:05:04 +0000

As many of you may know Dr. Diana Driscoll is on medical disability due to the autonomic nervous system complications from Ehlers-Danlos Syndrome and has not seen patients in the office since August of 2004. In the course of her research trying to find what was making her ill she accumulated considerable knowledge in Ehlers-Danlos and the complications associated with it. Dr. Driscoll has been asked to share her knowledge at the Ehlers-Danlos National Foundation Meeting in Houston July 31st - Aug 2.

Ehlers-Danlos Syndrome is a connective tissue disorder that affects multiple systems and organs. EDS, as it is called by patients that have it, has numerous different types. The most common types of EDS are classical and hypermobile. Another, rarer type called the vascular form, is the most dangerous because it involves weakening of the blood vessels which may rupture (an aneurysm), which is often fatal.

The most common symptoms of EDS are hyper-flexible joints (people sometimes refer to this as "being double Jointed") that are flexible beyond the normal range of movement, skin that is very stretchy, soft, bruises easily and is sometimes fragile (tears easily). EDS patients often complain of joint pain that may be mistaken for arthritis, yet the x-rays are not consistent with arthritis.

The most debilitating complication of EDS is a type of dysautonomia called Postural Orthostatic Tachycardia Syndrome or POTS. Dysautonomia is the result of our autonomic nervous system ceasing to function properly. Our autonomic nervous system regulates functions that our body does automatically such as digestion, breathing, heart rate, blood pressure etc. It is estimated that 40 to 70% of EDS patients suffer from POTS. Many patients with POTS don't know that they have EDS and are often mis-diagnosed with fibromyalgia or chronic fatigue syndrome. It is thought that autonomic dysfunction is caused by instability of the cervical spine thus interfering with the brain stem.

The medical literature reports that the incidence of EDS is approximately 1 in 10-14,000, however doctors report seeing it clinically more frequently. It is hypothesized that once doctors are made more aware of how to diagnose EDS that the reported incidence will be more like 1 in 3-5000 people.

Once doctors become more aware of how to identify patients with EDS I believe that the incidence reported in the general public will rise markedly. I have personally identified numerous patients in our practice that have EDS and concur with the incidence of 1 in 3-5000. I, in fact, would not be surprised if it was indeed more common than 1 in 3000.

Registration for the Ehlers-Danlos National Foundation 2008 Meeting is available at the EDNF website.

UPDATE: Visit the post EDNF conference entry for the lecture notes and a handout for eye doctors.

EDS Alert Newsletter No. 25

edsalert — Thu, 24 Apr 2008 18:02:55 +0000

The move to a new blogging service has been running smoothly, so please feel free to start promoting the EDS Alert Newsletter where ever you think it might help. Note for readers who use RSS feeds - the link to set up your own feed is here.

Disability/Legal Issues
Disability: Disabled often wait years for Social Security payment | Dallas Morning News)
Disability: Law protects SSI disability benefit(-)

Clara Blanc solicita la eutanasia

Hermes — Fri, 11 Apr 2008 19:55:53 +0000

Ya hablé en este blog del caso de Chantal Sébire, la ciudadana francesa que "presuntamente" se suicidó el pasado 18 de marzo después de que se le negara en varias ocasiones su petición de morir dignamente. Casi un mes después, otra francesa, Clara Blanc, de 31 años de edad, ha solicitado por carta al presidente francés, Nicolas Sarkozy, y a la ministra de Sanidad, Roselyne Bachelot, que la dejen morir con dignidad.

Blanc padece una enfermedad degenerativa denominada síndrome de Ehlers-Danlos, una afección hereditaria que lleva la disminución de los tejidos que sostienen la piel por falta de colágeno. Esto provoca hematomas, incapacidad para moverse y hemorragias múltiples.

Según la carta, que ha publicado el diario Le Monde, Blanc indica que "probablemente en cinco años estaré en silla de ruedas" y "la vida ya no es sino una agonía irreversible".

Cada día nuestra sociedad esta más avanzada tecnológicamente, pero... ¿por qué tenemos que ver como personas con este tipo de enfermedades agonizan hasta la muerte? Se que la eutanasia es un tema controvertido y que habrá opiniones en todos los sentidos. La realidad es que Blanc pertenece a la asociación suiza Dignitas (en Suiza si esta legalizada la eutanasia), que facilita el suicidio, pero para ello le solicitan 6.000 euros, ¿es justo tener que pagar para poder morir con dignidad?

¿Que opináis?

Vía | 20minutos

EDS Alert Newsletter No. 24

edsalert — Wed, 19 Mar 2008 01:02:10 +0000

EDS Alert Newsletter No. 23

edsalert — Wed, 30 Jan 2008 07:41:43 +0000

This is our monthly round-up of information about Ehlers-Danlos Syndrome (EDS). If there is not enough material to create a newsletter, the posts may end up occurring quarterly. For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups.

Forums
Forums: Lists Of EDS Info

Medical
Medical: Fatigue Disorders: Connective Tissue Disorder(-)