James Taylor and the Merits of Continuation

Good afternoon, sweet readers.  Maybe you're at work, maybe you're going to bed, maybe you're contemplating getting up, maybe you're making the gang a warming, soothing soup.  Maybe you're stuck on the highway.  Maybe the big toe on your right foot itches.  But enough about your possibilities.  You're not the boss of me.

Let's just dive right in, shall we?  I've seen JT in concert, I don't know how many times.  Great communal events, good weed passed down the rows.  However, there was the incident of being beaned by an empty Nivea bottle, for no discernible reason.  Did not break the bottle.  Did not break my head.

Uploaded by Josie Sharp to YouTube about 10 months ago

As I lay here contemplating whether this blog retains enough value to merit continuation, one of JT's songs popped into my head -- one, of course, that is not included on this hour's worth of concert video.  It's a song he wrote after his brother Alex's death: "Enough To Be On Your Way."  He wrote it in Paris, and that tugs at me, as much as anything, mostly because he gives the place import but there's not a bit of my experience of Paris in it.  I cannot fathom such... such a song being written from inspiration of walking those streets, rues, and avenues.  Mesas and mountains.  It's part of the general magic of JT.

You don't stumble on songs like this in my Paris.  He claims a bit fell out of this doorway, another from some cobbled side street.  I cannot do the fathoming, but then, I said that already.

So enjoy the first 62-minute vid, but it's this one that has my mind in its bony, bendy JT clutches.  Without searching out the date of my prior bad act, I know that I've posted it before.  Just like I could post a certain Springsteen song every day, and two or three Townes van Zandt bits of simple brilliance, shining brilliance. Songs so good that the struggle to reenact their creation -- an old bad habit from which I refuse to be disabused -- is like dashing one's self against the old smoothness of Helm's Deep, water on stone.

Before the white-handed sun-abiding orcs, when a good siege was worth the trouble.

Okay, so I've been hiding out in Lothlorien.

But it's a JT day, this day of pondering this blog's fate. 

This is what he wrote of "Enough To Be On Your Way" in the Sony liner notes:

My brother Alex died in '93 on (not for) my birthday. We all went down to Florida to say goodbye. The day after we flew home (the day after his cremation) a giant mother hurricane followed us north through the Carolina's; trashing everything in its path and finally raining record rains on Martha's Vineyard (home).
In Paris, a year later I changed his character to a hippie chick named Alice and the location to Santa Fe; but my soulful older brother is still all over this song like a cheap suit.

The sun shines on this funeral

The same as on a birth

The way it shines on everything

That happens here on Earth

It rolls across the western sky

And back into the sea

And spends the day's last rays

Upon this fucked-up family

So long old pal

The last time I saw Alice

She was leaving Santa Fe

With a bunch of round-eyed Buddhists

In a killer Chevrolet

Said they turned her out of Texas

Yeah she burned 'em down back home

Now she's wild with expectation

On the edge of the unknown

Oh it's enough to be on your way

It's enough just to cover ground

It's enough to be moving on

Home, build it behind your eyes

Carry it in your heart

Safe among your own

They brought her back on a Friday night

Same day I was born

We sent her up the smoke stack

And back into the storm

She blew up over the San Juan mountains

And spent herself at last

The threat of heavy weather

That was what she knew the best

Oh it's enough to be on your way

It's enough just to cover ground

It's enough to be moving on

Home, build it behind your eyes

Carry it in your heart

Safe among your own

It woke me up on a Sunday

An hour before the sun

It had me watching the headlights

Out on highway 591

'Til I stepped into my trousers

'Til I pulled my big boots on

I walked out on the Mesa

And I stumbled on this song

Oh it's enough to be on your way

It's enough just to cover ground

It's enough to be moving on

Home, build it behind your eyes

Carry it in your heart

Safe among your own

Uploaded to YouTube on December 27, 2009 by Astralionica

i love my go-to-guy

my eyes are almost swollen shut from self-pity, since my self-pity, combined with my rising fever and 9.9 out of 10 ranking on the retarded pain scale, equate to nonsensical tears but my mind is relatively unburdened, thanks to an hour and a half spent with dear, sweet, smart, inventive, superior go-to-guy, my "concierge" doctor that you'll have to shoot me to give up.  yes, i am poor -- and advocate living within one's means -- but i have budgeted for what i consider a compelling necessity, a medical gate-keeper.

anyway, his eyes lit up as he hit on an idea of how to work our peculiar situation and magic with the HMO i am now enrolled in, and with which he is not affiliated.  but the flat fee that i pay each year to "retain" him, well, it retains him.  in dire circumstances, and we are familiar with them, having him around... pays off.

anyway, we went over blood work, we devised a plan to so mesmerize the HMO and the physician i will have to choose in their network, and then...

we decided it was time for me to have a hospital bed with a trapeze. that will make things easier for me, but is one of those moments, you know?  the "oh, yeah, i am ready for disease and disability to reduce me a bit farther." reduce me, constrict me... also, though, on that sliver of pragmatism to which i cling -- it's a change that won't reduce me to tears when i think of how to turn over or sit up or, the ultimate!  when i think of how to both sit up, pivot so as to sit on the side of the bed, then stand and walk to the bathroom.

i went to my doctor's appointment without having brushed my teeth, much less showering.  that caused mucho boo-hooing on my part.  i am nothing if not ridiculous.

it's going to take a while to get the new doctors on board ("you realize they are going to take one look at your history and my summary of the last few years, and either take off running, screaming, or try to reinvent the wheel by ordering every test under the sun, don't you?") and so it will take a while before my carefully put together bedroom gets torn apart.  captain haddock is going to have a cow.  marlinspike hall's beautiful and antiquated décor -- and by "antiquated,"  i mean full of gorgeous and one-of-a-kind antiquities -- has never been so abused.  maybe the haddock corporation will see this as the last straw and put me and my belongings in a pile by the barn, just beyond the moat, and the reach of the drawbridge.  maybe the carnie rehab facility, right now mostly limited to cirque du soleil and local freak show addicts of the finest and most acrobatic kind... will take me in.  i could be a kind of barn mother hen.  and heck, who knows what monumental one-of-a-kind gymnastic moves i can come up with when provided with a hospital bed and a trapeze? eh?

see?  it's all rather too much to take in.

so we're cooking a chicken pizza, and plan on watching something mindless. dr. phil, or one of the multitude of law and orders.  maybe a cold case, or judge judy.

go-to-guy also rapidly and kindly filled out my POLST form, so i am covered -- live and let die!

my mind is jiggling like jello.

© 2013 L. Ryan

"Cure RSD / CRPS" and Wave the Sage...

This is a low period for me, and for Fred, who is apparently worn out by me and my penchant for self-pity. This I know because last night, after telling him I felt, and please excuse my language, "like a worthless piece of shit," he turned away and said, scoffingly, "pity, pity, pity."

It was the second day in a row that I could not walk, not even from bed to bathroom, without several stops along the way (meaning every 3-5 feet) and a couple of "Hail Mary" grabs at furniture to remain upright.  The pain has been indescribable.  The depression -- describable, as mentioned above, but apparently something I'm not allowed to mention.

The only reason I have not committed suicide is my duty to Fred to leave him enough money that he will survive "in the manner to which he has become accustomed" -- almost drowning in poverty, but not quite.
As soon as I hit the mark, I'm gone.

This morning, I woke screaming.  After sublimating the natural reaction to this level of pain, I did the coffee thing, the care-for-the-animals thing, then the special-care-for-the-animals thing -- known as Dobby Time. Then I managed to get my legs back in the bed, struggled to sit upright, grabbed the computer, and checked to see if my new ACA Marketplace Health Insurance company had responded to my frantic emails.  Nope.

But YouTube notified me of a message from someone, so I surfed in that direction.  It involved a pitch for a CRPS cure, about which I could get the bare-boned information if I paid him $349 for his personal years of research into the disease, and the one (I think he says "one," but maybe it was "several.") research article available about the "cure" he found, and that the rest of the world has been ignoring.

People have become angry with me for reacting with skepticism to the cures they offer.  The group of doctors who wanted me to give myself Ketamine intravenously, at home, unmonitored, for $50 a week.  I could pretty much pick the dosage.  The pain management doctor who wanted to have "some ladies from my church" wrap me in herbs and bandages, and prayer.  The player of the singing crystal bowl who induced bronchospasm with all the sage bundles she burned over me.  The many nurse practitioners of Healing Touch.

Also worth mentioning are the times I was angry at being led along, or not meeting the criteria for treatment. Various clinical trials, a couple that I might have tried but was told by one of my doctors that he'd not treat me any longer if I did.  Implantable devices that I cannot try because of my history of chronic bone infection at sites of implanted prostheses. (Thanks very much, St. Joseph's Hospital of Atlanta and Doctors Eric Carson, Steven Sween, Leslie Kelman, and the nurses in the ICU in May of 2002)

So this morning, I just cannot handle another "gimme, gimme, trust me, trust me..." routine.  Here is the video, for those of you willing to (or desperate enough to) pay for information that is apparently readily available, but which we have all managed to overlook.

I managed a short nap after coffee (an idiosyncratic reaction?) and dreamed, once again, of being trapped in the elevator in one of the medical office buildings at SJHA with the aforementioned unethical Doctor Gods, an elevator that left me gasping because it was filled with the smoke of a sage bundle, and rushing to exit the cage of the elevator as soon as that prison slowed to stop at a floor, any floor, be it the entrance to Hell itself.

So, um, clearly I have issues.  Those doctors represent fraudulent medical treatment, more aptly put as "failure to diagnose and failure to treat," threats (very specific threats), improper treatment, bullying, lying, failure to report a Sentinel Event, and the ruination of my life.  I write that confident that the sentence is completely true and actually soft-peddles their roles in the reality of the first few years I had CRPS. The sage, my inability to breathe or speak?  That represents what I know now was my stupidity and extreme gullibility.  It represents the loss of my life's work as an educator, and the steady pay check with benefits that I enjoyed.

Sage smudging, from Estrella Magick

That ought to provide enough grains of salt for you to wade though... You're welcome.  Excuse the self-pity. Excuse the desire to OD on insulin, fentanyl, methadone, percocet, tizanidine.  Also, kindly overlook my catchy theme song of "Shoot me in the head / Shoot me in the head / Shoot me in the head / I'd be better off dead."  As Dylan said, "I'm a poet /  I know it /  Hope I don't blow it." At least, I *think* that's what he said. He's actually declined in my estimation as I've aged -- I tire of guessing who he wants me to guess him to be this year.  After spending so much time figuring out whom I am, I care less and less about his personas.

Love the music, though.

So here is Cure RSD / CRPS and his video, followed by the details he provided on YouTube, both uploaded yesterday.

Published on Jan 1, 2014In this video, I discuss a cure for RSD / CRPS (not Ketamine!) and my 13 years of chronic pain with the illness during which I saw over 100 doctors and "experts" who knew next to nothing and tried dozens of medications. I suffered from a case described by doctors as "extreme and severe". Finally, after months of desperate research I found the treatment which helps most of the people treated. It is not a crazy-go-it-alone therapy, but is documented in several studies and is carried out at most rheumatological university clinics in one western industrialized nation to cure this disease which by any standard for CRPS are high success rates -- but very, very few sufferers or doctors know about it. Stop taking pills for the pain. Try to get CURED. Watch this video to find out more and how you can get more information on this and possibly end your suffering and/or the suffering of someone you love. Until I have assembled a full information package and posted it for download, for more information, send an email to exoskeleton@gmx.de and title it, "RSD Cure". Please be prepared to make a $349 donation to my PayPal account to cover 13 years of my research into the problem of CRPS. We can also make arrangements for payment of $699 IF you feel the treatment helps you significantly after the fact. The total cost of the treatments at the university clinic were about $1100 - $2300. The treatments take about a week to carry out. A bed and breakfast in the area can be arranged 800 meters from the hospital for about $50 to $65 per night. If you are new to CRPS, this information will help lead you through the maze of information out there and give you proven good odds of returning to your old life with the most thoroughly studied but least well known treatment out there. This will get you a summary of the treatment options, history of the treatment, the info on the most recent study with the improved treatment method which now shows close to an unbelievable 100% double-blind, placebo controlled success rate, where to get it, even email addresses for doctors who perform the treatment, and two locations in Europe which do it. You will also get a list of links for the studies and information you need. I will be happy to have a short personal discussion with you about the problem and the treatment. One of my very good friends with the same disease has seen my rapid improvement, read the studies I collected, and he has already contacted the university I went to and bed and breakfast I stayed at and will soon be going for his own treatment at the hands of the same highly competent doctors who treated me. I am sure in 2 months he will be much, much better. Note: because of copyright laws, I cannot give you the actual studies, but I can give you their full names and tell you where to find them with links in the internet.

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A Poem for a New Year, Again. Once More. Encore Une Fois.

a Praise Song for the Day Courtesy of the Academy for American Poets
A Poem for Barack Obama's [first] Presidential Inauguration by Elizabeth Alexander Each day we go about our business, walking past each other, catching each other's eyes or not, about to speak or speaking. All about us is noise. All about us is noise and bramble, thorn and din, each one of our ancestors on our tongues. Someone is stitching up a hem, darning a hole in a uniform, patching a tire, repairing the things in need of repair. Someone is trying to make music somewhere, with a pair of wooden spoons on an oil drum, with cello, boom box, harmonica, voice. A woman and her son wait for the bus. A farmer considers the changing sky. A teacher says, Take out your pencils. Begin. We encounter each other in words, words spiny or smooth, whispered or declaimed, words to consider, reconsider. We cross dirt roads and highways that mark the will of some one and then others, who said I need to see what's on the other side. I know there's something better down the road. We need to find a place where we are safe. We walk into that which we cannot yet see. Say it plain: that many have died for this day. Sing the names of the dead who brought us here, who laid the train tracks, raised the bridges, picked the cotton and the lettuce, built brick by brick the glittering edifices they would then keep clean and work inside of. Praise song for struggle, praise song for the day. Praise song for every hand-lettered sign, the figuring-it-out at kitchen tables. Some live by love thy neighbor as thyself, others by first do no harm or take no more than you need. What if the mightiest word is love? Love beyond marital, filial, national, love that casts a widening pool of light, love with no need to pre-empt grievance. In today's sharp sparkle, this winter air, any thing can be made, any sentence begun. On the brink, on the brim, on the cusp, praise song for walking forward in that light. 2014 was interesting, and we are grateful for having laughed and cried, screamed and muttered our way through it. You know how much I love my two brothers, TW and Grader "The Lumpy" Boob? Both imminently, eminently brilliant (and shiny, too, almost prismatic!), they both snicker and snort at pretty much the same things, in pretty much the same snick-and-snort style. Grader "The Lumpy" Boob, however, in a fit that combined what sounded like a combination of a cough, a hearty spit, a collegiate snick, and a lifelong snuffled snort January 20, 2009. President Obama's First Inauguration. For information on Elizabeth Alexander, click HERE.

pure, unadulterated, worth-a-cry sappy!

sap·py

ˈsapē/

adjective

1. 1.

   informal

   excessively sentimental; mawkish.
2. 2.

   (of a plant) containing a lot of sap.

hi, i'm in tremendous pain, nearly caving in to the claim of 9.9/10 on the idiot pain scale.

and constantly beginning, relearning my mindfulness lessons.  restarting relearning in three, two, one...

here is a portion of an entry by a CaringBridge child's mother about her son, whose prognosis is quite poor but whose attitude is awe-inspiring, but not the over-glucosed, rainbowed cotton-candy kind.  he's quite real, which makes that attitude ever more... mindful.

[i "adopt" 4 CaringBridge kids at a time, supposedly.  in actuality, i'm at 8 young ones, each a translation by their journal keeper.  most journal keepers are the mothers, and most are inspirational, themselves.  still, out of respect for the child, i sometimes read through, between, and under the lines to find him or her, and, as you have seen and shortly will again, i read photographs.]

the entry, with identities modified:

The journal picture I've included is of A and his two little brothers, ages 5 and 8.  After A finished chemo (before he spiked a fever), he had to make the long walk over to the cardiology clinic in order to get an echo and ekg.  Neither one of us wanted to make that walk for exams that were needed to close out the LEE011 study for A.  It was just salt in an already open wound.  By the time A finished the heart exams, he was feeling awful.  I asked him to let me hunt down a wheelchair (he had to go back to the oncology clinic to finish fluids) as his 5 year old brother grabbed his IV pole while his 8 year old brother offered to hold his hand.  I don't think I'll ever forget hearing A ask his 8 year old brother, "Hey Bro, can I put my arm around you to help me walk?"  A didn't wait for a wheelchair.  Instead, he slowly walked from one end of the hospital to the other with the help of two brothers who so tenderly love him.

and here is the photo she used to top her journal entry:

the journal keeper readily admits she's a pessimistic realist with a corrective heavenly guiding hand -- quite a combination, and one that i recognize.  i will admit with equal readiness that i would not trade places with her or with A, nor with A's two brothers.

however, she (and i) are working on our attitudes, sometimes with that corrective guidance, sometimes with simple mindfulness -- just sit in it and be -- -- -- -- and so it was that one of the most (personally) beautiful photos i've ever seen was snapped by daisy love merrick's mother, before her last relapse. i bet that was one sassy, swishy walk.  when renaming the photo to match my recollection patterns, i chose "daisy walks away in peace." and so she did.

okay, you tough ones.  you know who you are.  you think you are impervious to my sap, my sappiness. well, friend, gird your loins... because i know for a bona fide fact that daisy love merrick walks this earth, complete with her funky, hippy clothes, and her sassy, swishy walk, and her unique grin (involves the meteoric impact of freckles), as well as her always-remembered mother, father, and sweet brother, and scads of surfing fanatics. but she does not walk alone -- and not with wraith-like holograms of her loved ones -- no!  she walks with treebeard, the eldest of the ent species.  put that in your sap pipe and smoke it.

harrumph.

hat tip to treebeard:

sap·py

ˈsapē/

adjective

1. 1.

   informal

   excessively sentimental; mawkish.
2. 2.

   (of a plant) containing a lot of sap.

© 2013 L. Ryan

"Do not be afraid!"

The Vatican's official English-language translation of Pope Francis' prepared homily, delivered in Italian, during Christmas Eve Mass Tuesday in St. Peter's Basilica.

"The people who walked in darkness have seen a great light"(Is 9:1).

This prophecy of Isaiah never ceases to touch us, especially when we hear it proclaimed in the liturgy of Christmas Night. This is not simply an emotional or sentimental matter. It moves us because it states the deep reality of what we are: a people who walk, and all around us - and within us as well - there is darkness and light. In this night, as the spirit of darkness enfolds the world, there takes place anew the event which always amazes and surprises us: the people who walk see a great light. A light which makes us reflect on this mystery: the mystery of walking and seeing.

Walking. This verb makes us reflect on the course of history, that long journey which is the history of salvation, starting with Abraham, our father in faith, whom the Lord called one day to set out, to go forth from his country towards the land which he would show him. From that time on, our identity as believers has been that of a people making its pilgrim way towards the promised land. This history has always been accompanied by the Lord! He is ever faithful to his covenant and to his promises. "God is light, and in him there is no darkness at all" (1 Jn 1:5). Yet on the part of the people there are times of both light and darkness, fidelity and infidelity, obedience, and rebellion; times of being a pilgrim people and times of being a people adrift.

In our personal history too, there are both bright and dark moments, lights and shadows. If we love God and our brothers and sisters, we walk in the light; but if our heart is closed, if we are dominated by pride, deceit, self-seeking, then darkness falls within us and around us. "Whoever hates his brother - writes the Apostle John - is in the darkness; he walks in the darkness, and does not know the way to go, because the darkness has blinded his eyes" (1 Jn 2:11).

2. On this night, like a burst of brilliant light, there rings out the proclamation of the Apostle: "God's grace has been revealed, and it has made salvation possible for the whole human race" (Tit 2:11).

The grace which was revealed in our world is Jesus, born of the Virgin Mary, true man and true God. He has entered our history; he has shared our journey. He came to free us from darkness and to grant us light. In him was revealed the grace, the mercy, and the tender love of the Father: Jesus is Love incarnate. He is not simply a teacher of wisdom, he is not an ideal for which we strive while knowing that we are hopelessly distant from it. He is the meaning of life and history, who has pitched his tent in our midst.

3. The shepherds were the first to see this "tent", to receive the news of Jesus' birth. They were the first because they were among the last, the outcast. And they were the first because they were awake, keeping watch in the night, guarding their flocks. Together with them, let us pause before the Child, let us pause in silence. Together with them, let us thank the Lord for having given Jesus to us, and with them let us raise from the depths of our hearts the praises of his fidelity: We bless you, Lord God most high, who lowered yourself for our sake. You are immense, and you made yourself small; you are rich and you made yourself poor; you are all-powerful and you made yourself vulnerable.

On this night let us share the joy of the Gospel: God loves us, he so loves us that he gave us his Son to be our brother, to be light in our darkness. To us the Lord repeats: "Do not be afraid!" (Lk 2:10). And I too repeat: Do not be afraid! Our Father is patient, he loves us, he gives us Jesus to guide us on the way which leads to the promised land. Jesus is the light who brightens the darkness. He is our peace. Amen.

Henri, le chat existentialiste, nous explique tout...

Henri 5, "The Worst Noël" -- uploaded to YouTube by Henri le Chat Noir

Un cadeau du sein des coeurs de nos amis Marmy FluffyButt, Buddy (grand chaton scandaleux), et 

Dobby, celui qui n'est comparable qu'à soi.

*h/t to Fred, upon whom all things darkly existential descend.

News Flash! Fred Has Extra Large Brain But NO Acoustic Neuroma!

Are you seated?  This post contains nothing but the best of news.

First, that which was already assumed to be true has now been confirmed by scientific evidence.  Fred's skull contains the largest and most active neural network ever documented, such that it is beyond the linguistic limits of the definition for "brain."  Therefore, all those arguments I so egotistically placed in my Win Column were Pity Wins.

I am appropriately awed, and retroactively chastised.

Second, and an occasion for bubbly, if ever there was one:  Fred had his MRI this afternoon and was told but a few hours later that nothing showed in or between his fleshy ears except the aforementioned surplus of smarts.

Relieved not to have a brain tumor that favors the brain stem, Fred is still facing the unexplained loss of hearing in his right ear and the acquisition of annoying noise in lieu of my soothing dulcet tones.  It's a hard blow for a dedicated audiophile and student of several musical instruments.

Even so, as I'm fond of watching him snorkel his way around the moat during the daily algae inspection, while I sip my coffee from the drier climes of the drawbridge, I am here to help him deal with hearing loss, but so much happier a helpmate than if he were facing brain surgery and facial nerve paralysis.

Thanks so very much to those of you who have kept Fred in mind and prayer.

© 2013 L. Ryan

My Hero Hannah Needs Your Help

Please excuse this unusually terse entry -- more on that in the next terse post -- but time is of the essence!

[If you don't recall Hannah, click on her bolded, underlined, and capitalized name just below this, my favorite photo of her, called "Hannah's Crane."]

HANNAH is my hero because:

• she faced osteosarcoma like a mentally seasoned champion, not a young, untested girly-girl
• with her family, she chose a relatively new option for the surgical removal of the tumor in her leg -- rotationplasty
• she faced recovery and rehab from the rotationplasty with courage and a grand work ethic
• part of the therapy for osteosarcoma, as for most cancers, involved radiation and chemotherapy, and these things, too, she struggled through with beautiful style (as beautiful as one can be whilst throwing up)
• just when all seemed well, hannah developed one of the side effects of her chemotherapy -- leukemia (and if that isn't a kick in the stomach, what is?)
• as if that were not enough, the osteosarcoma reared its ugly head again, traveling to her lung, and she underwent surgery to remove that cancerous nodule.
• she undertook this challenge as she did all the others, in beauty and ferocity
• but still, she needed a bone marrow transplant to defeat the leukemia, a truly arduous and scary procedure
• now post-transplant, she and her family live with the fear of rejection syndrome and further spread of the osteosarcoma, so every symptom that you or i might consider trivial, they must treat as potentially life-threatening and make a run to the doctor or ER...
• and they do all these things with grace, humor, and the requisite NEGU attitude (Never Ever Give Up)

I think you get the gist of it, yes?  She is doing well but the struggle is not over, and while she became my hero when I read about her choice of the rotationplasty at the beginning of her journey, I imagine that as she grows, in emotional and physical age, that choice will provide her with some challenges as well as its many benefits.  But that's ME talking and projecting my weaknesses onto Hannah.  Excuse me!

Her mom posted this request today and I hope as many of my bazillion readers as can will place an order to help them out with the medical bills and the bills of daily living that have had to be pushed aside for two years.  Shoot, I will project one of my major pet peeves onto the Smith family: parking fees! Never mind the cost of all the traveling they've had to do for treatment, just think of the darned parking fees at all those hospitals, doctors' offices, and "medical buildings."  I may hold a fundraiser for myself one day, just for parking fees...

Oops.  Train of thought, off the tracks once again.

Here is Hannah's Mom's message:

12-16-13

1 hour ago

Hannah has designed a T-shirt that is on her favorite color. It is a fundraiser and we need your help. You only have until Thursday to pre-order. $15 each and will be shipped 2 weeks after the end of the last order date. Our goal is 150 shirts but we only have 89 ordered so far. Can you help? Here's the link:

https://www.booster.com/hannahsmith?share=6511387163898591

Thank you for your help! 

© 2013 L. Ryan

Inside Edition Airs Two CRPS Videos

*hmmm. i am not sure why the two Inside Edition vids begin playing automatically.  my apologies for the onslaught of sudden noise.  perhaps {she prays} the problem will just disappear.  [this is why i had to abort my career as a Life Coach.]
*well, i got so fed up finally that i replaced the vids with links TO the vids.  apologies (again) for the inconvenience.

They're simplistic by necessity -- how to explain CRPS in roughly three minutes -- but a good introduction.  I am awed by the woman who gets relief from people rubbing her leg, with a rough looking blanket, no less, but beyond that, it's a fair depiction.  How I wish, though, that those of us with CRPS did not sound so certifiably insane in our verbal attempts to share what its pain is like!  The python reference was a new one for me.

I have trimmed down my answer (in non-blog life) to:  "The pain is constant and severe. It varies from burning to stabbing to throbbing.  If accompanied by spasms, it is intolerable."

In between the two Inside Edition videos, I've inserted one of my own old "standards." It's about 2.5 years old, and things aren't better, so use your vivid imagination -- in technicolor! I WISH I had the "problem" of people thinking there is nothing wrong with me.  My problem is that when strangers, even medicos, see my feet or legs for the first time, they offer to drive me to the Emergency Room.  Seriously!  My first visit to my shoulder orthopedic surgeon, his nurse kept saying:  "But, sweetie, we can't even look at your shoulder until you go get that foot treated!  Were y'all in a wreck on the way here?" She now doesn't even flinch.


Doctor Explains Mysterious CRPS Condition

Mysterious CRPS Condition Hits Home For Inside Edition Reporter

RSDSA: supporting the CRPS community

hi, beloved readers!  this is a hijacked ealert from the inimitable jim broatch of RSDSA.  CRPS is devastating, in so many ways.  there are the physical symptoms, and with years of intense, unrelenting pain come depression and anxiety.  friends and family tend to disappear.  the patient grows more disabled, less mobile, and is isolated.  financial ruin almost seems like another -- often ignored -- impact of CRPS.

consider giving someone in severe pain and struggling mightily a hand this year.  

good on ya!

Dear Beloved Readers of elle est belle la seine la seine elle est belle: This year on Tuesday, December 3, 2013, RSDSA is part of a call to action that will change the calendar and help make history. We are celebrating a day dedicated to giving - when charities, families, businesses, community centers, students, retailers, and more will come together for #GivingTuesday - a movement to celebrate giving and encourage more, better and smarter giving during the Holiday Season that we are proud to be a part of. #GivingTuesday will create a day of giving around the annual shopping and spending season. Tomorrow is our "opening day." Starting December 3, we invite you to be part of this celebration. #GivingTuesday will show how the world can do much more with our wallets than just consume. Please visit us at http://www.rsds.org/donate.html and consider celebrating this Holiday Season with a gift to The Patient Assistance Fund In Honor of Brad Jenkins and help those in need. When you donate please specify that the donation is for the Patient Assistance Fund in Honor of Brad Jenkins. Many people with CRPS are unable to afford basic medical needs. Since its inception, the Patient Assistance Fund, has helped needy individuals with CRPS in various ways. Some examples include: Adaptive controls for a motor vehicle   Travel and lodging costs for individuals to consult with out-of-state pain specialists Phone consultations with a pain psychologist for individuals with CRPS whose insurance refused to pay Four visits at a reduced fee with a pain specialist for an individual without insurance  CRPS can be financially devastating. Many people with CRPS lose their jobs and health insurance. Paying for medication, treatments, medical equipment and doctor's visits can be impossible. RSDSA intends to dramatically increase the Patient Assistance Fund to help many more individuals who have suffered financial devastation because they developed CRPS.  With your help, we can provide larger grants to those in need - to adapt a home to make it easier and safer for a wheelchair bound person to get around, or to provide durable medical equipment, such as wheelchairs, scooters, walkers, and other adaptive devices.  Our ultimate goal is to be able to work with local government and community programs to provide all those who suffer with CRPS the assistance they need when they need it.     THEIR NEED IS GREAT AND OUR FUND IS SMALL! Please help RSDSA make a huge difference in the lives of people with CRPS by making a tax-deductible donation today. http://www.rsds.org/donate.html   Be sure to visit the RSDSA website for the latest CRPS/RSD information including new treatment options, valuable resources, upcoming events, and Support Group in your area. Click Here to Visit Now! SUICIDE CRISIS INFORMATION If you or a loved one are in crisis Please call 1.800.SUICIDE (800.784.2433) Hope Line or The National Suicide Prevention Lifeline 800.273-TALK (8255) - (888-628-9454 en Español) For more information on suicide prevention, click here.

CRPS: Inflammatory, Neuropathic and Immunologic?

Researchers Continue To Look for Basic Understanding of CRPS Causes

Toronto—Researchers tasked with developing a rudimentary understanding of complex regional pain syndrome (CRPS) are dividing their attention in several different directions. According to several experts who spoke at the 2013 International Congress on Neuropathic Pain, there is evidence for inflammatory, neuropathic and immunologic roots to the enigmatic syndrome, and further investigation into these three aspects of the syndrome is necessary for the development of more effective treatments.

“These different contributing factors all influence each other, so we need to address all of them so that patients don’t get onto a downward spiral where each factor worsens another,” Anne Louise Oaklander, MD, PhD, associate neurologist at Massachusetts General Hospital and associate professor at Harvard Medical School, both in Boston, told Pain Medicine News after attending the panel discussion.

Not a Perfect Fit

Ralf Baron, MD, vice chair of the Department of Neurology and head of the Division of Neurological Pain Research and Therapy at the University Hospital Schleswig-Holstein in Kiel, Germany, told attendees that until recently, CRPS was understood to be clearly a neuropathic pain disorder. However, CRPS does not fit with the 2008 redefinition of neuropathic pain, defined as “pain arising as a direct consequence of a lesion or disease affecting the somatosensory system” (Neurology 2008;70:1630-1635).

“CRPS is neuropathic in that there are characteristic neuropathic sensory abnormalities, but it also shows signs of central sensitization, inflammation, and autonomic and motor abnormalities,” Dr. Baron told attendees.

One way of grouping CRPS patients is by looking at their distinct somatosensory dysfunctions, Dr. Baron suggested. Individuals with deficits in temperature detection but no allodynia, and with loss of small nerve fibers, innervation and nerve degeneration, can be classified as having a neuropathic disorder. A second cluster of patients can be seen as having central sensitization, with normal temperature sensitivity but severe mechanical and thermal hyperalgesia. A third patient cluster may have inflammatory CRPS, with deep hyperalgesia and heat hyperalgesia but no hyperalgesia to prick testing, Dr. Baron explained.

An Autoimmune Disease?

Another way of understanding CRPS, proposed by Andreas Goebel, MD, PhD, senior lecturer and honorary consultant at the University of Liverpool and Walton Centre National Health Service Foundation Trust in Liverpool, United Kingdom, is that a subset of CRPS patients have an autoimmune disorder–related condition.

“It is possible that a regional immune response is triggered following stress, inflammation and trauma,” he posited.

Dr. Goebel believes some of the 15% of CRPS patients with refractory symptoms lasting longer than six to 12 months may fall into this group (Pain 2009;142:218-224). He noted that several studies support the autoimmune paradigm, with results showing that a subset of CRPS patients have elevated levels of serum antibodies to several bacterial pathogens.

“Furthermore, there is evidence for CRPS serum immunoglobulin binding to peripheral nerves,” he said (Neurology 2004;9:1734-1736).

Indeed, several small case series, including his own, have demonstrated the efficacy of intravenous immunoglobulin G (IgG) in subsets of patients with long-standing, refractory CRPS, Dr. Goebel said (Pain Med 2002;3:119-127). Additionally, a randomized controlled trial of 12 patients with long-standing CRPS who received the agent found that 25% had pain relief at least 50% relative to baseline and 17% had improvements in pain between 30% and 50% (Ann Intern Med 2010;152:152-158).

Although IgG has anti-inflammatory effects in addition to being an immunomodulator, Dr. Goebel believes IgG’s efficacy is likely not explained by its anti-inflammatory effect.

“All of the investigations which we have done, both in the lab and clinically, have been leaning more and more toward confirming there is an autoimmune aspect to CRPS,” Dr. Goebel concluded. “However, since we do not know which structures the autoimmune response is targeting, our current evidence remains somewhat indirect.”

According to Dr. Goebel, if some patients in fact have CRPS of autoimmune origin, “a range of potential therapies, such as therapeutic plasma exchange and B-cell modulating therapies, can be at our disposal.

“These have all been tried and tested in other autoimmune disorders, and we can have access to an armamentarium that we did not have before,” he said.

An “Ultralocal” Inflammatory Response?

Frank Huygen, MD, PhD, professor of anesthesiology at Erasmus Medical Center in Rotterdam, the Netherlands, argued the inflammatory component to CRPS could be the most clinically meaningful element of the syndrome in some patients. However, rather than looking for systemic inflammation, he believes researchers need to consider an “ultra-local” inflammatory response.

“There are inflammatory mediators that are increased in the blister fluid of an involved extremity in CRPS,” Dr. Huygen said.

His own research has documented increased levels of interleukin-6 and tumor necrosis factor (TNF)-alpha in some patients (Eur J Pain 2008;12:716-721).

In a small, placebo-controlled, randomized trial, Dr. Huygen and his colleagues showed that the anti-TNF drug infliximab (Remicade, Janssen) exacerbated symptoms in some CRPS patients, leading to discontinuation of the trial (Pain Pract 2013; May 22: doi: 10.1111/papr.12078). The researcher still believes there could be a role for infliximab and other biologics in the treatment of CRPS.

“Although the sponsor stopped the study early, preliminary data showed enormous reductions in TNF-alpha levels in blister fluid with infliximab treatment, but these did not correlate with clinical changes,” he said.

Summarizing the challenge of understanding and treating a complex syndrome, Dr. Baron suggested CRPS should no longer be seen monolithically as a neuropathic disorder.

“As long as we do not have a clearer pathophysiological picture of CRPS patients, and because of the obvious heterogeneity of the signs, symptoms and mechanisms of the syndrome,” he said, “it would be wise to look at the condition separately from other classical neuropathic pain syndromes.”

—David Wild