Sarah Palin Battle Hymn

Uh, I found this lying all innocent-like in the middle of a blog post over at Shadowfax's place, Movin' Meat. 

This is the warning he gave and which I echo and only slightly modify:

Use caution before deciding to watch it. Remember, what is once seen (or heard) can never be unseen (or unheard).

Written-Tom Dempsey
Vocal- Gary Mcvay

I dunno who the chick is...

Pray and Fast for Kate on Monday, February 7

Kate Mcrae's PET scan is scheduled for Tuesday, February 8.  This brave seven-year-old has a rare and aggressive form of brain cancer that has returned despite surgery, chemotherapy, and radiation.

In her journal on CaringBridge, Kate's mom Holly has shared how hard this time is, how many decisions need to be made, and how they continue to pray for a miracle.

We have been contacting various healthcare specialists around the country researching potential options, as Kate's healthcare team does the same. If things would proceed in an undesirable direction, we will need to be making rather informed, but quick decisions. We continue to cry out for healing for our baby. It would be nothing short of miraculous for the PET scan to come back not indicating cancer. We are boldly praying for that.

Kate's father Aaron has asked for those who are willing and able to join them tomorrow in a day of prayer and fasting.  As always, this faithful couple has imbued their prayer with specifics, something that has always delighted me and been a real help when storming heaven on behalf of Kate.  I'm pretty sure God finds my efforts much improved when the Mcrae's needs keep them focussed and appropriate.  Aaron writes --

Here are a few requests for those who will partner with us:


For Healing… for Kate’s complete healing from top of her head to her toes
Psalm 107: 19 Then they cried to the LORD in their trouble, and he saved them from their distress. 20 He sent forth his word and healed them; he rescued them from the grave.


For Wisdom… for Holly and I, for the doctors, and people we consult with
Colossians 1:9 For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding.


For Jesus to be Glorified… for Christ to be seen as POWERFUL & to be praised
John 11:4 Jesus said, ‘This sickness will not end in death. No, it is for God’s glory, so that, God’s Son may be glorified through it.’

Again, I want to thank the countless people who have prayed and encouraged us for some time. We would be honored if some of you could join us in this day of seeking God in prayer and fasting. Please pass this along and ask others. If you need some guidance in fasting, I have found this site to be helpful:  Awake21 particularly the ‘Prayer, Fasting, and Personal Devotion Guide.’

I really appreciate Aaron and Holly continuing to minister in the middle of their pain and hurry -- I appreciate them telling us exactly what we can do, providing resources, providing scriptural references. I am not exactly fertile ground for much of this, but I always hope for a time when sarcasm and an ironic world view will ease. Until then, I'll just do the best I can. If you, too, are uncomfortable and inexperienced with prayer and fasting born from beliefs so fierce and necessarily literal, join me tomorrow and let's try to shed our smart-assed ways.

Being dumb before God can't be anything too new.

All we gotta do is remember Holly and Aaron, and their children Olivia, Will, and most especially, Kate.

Will, Aaron, Holly, Kate, Olivia

From The TomKat Studio

E-Alerts from RSDSA

Some interesting things forwarded by Jim Broatch over at RSDSA:

Kentucky Bill Would Require Nurses to Complete 2 Hours of CRPS Education


On Tuesday, February 1, 2011, HB 234 was introduced in Kentucky. The bill would require all nurses in the state to take a one time 2 hour course in CRPS/RSD. It will go before Health and Welfare Committee Chairperson Rep. Tom Burch.


We are asking all Kentuckians to contact Tom Burch at Tom.Burch@lrc.ky.gov or 1-800-372-7181 and request him to choose this bill to go before it goes before the committee.


For more information, please contact Carolyn Clemons
South Central KY RSD Support Group, 270.879.4023

Transportation Security Agency Issues new Medical Notification Cards

The Transportation Security Administration (TSA) has issued a new medical notification card that travellers can present to airport screeners. The card will not exempt passengers from screening, but it will alert the TSA employee that a health condition exists. Click here for the link to the card.


We also suggest that before you fly, ask your physician for a recently dated letter addressed to TSA Employees/Security Checkpoint Supervisor stating that you have been diagnosed with Complex Regional Pain Syndrome (CRPS), a neurological syndrome characterized by intense chronic burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. Your physician can recommend that you be scanned by an electronic scanning device rather than being physically searched, which will cause intense pain and prevent your traveling.


CRPS Diagnostic Codes


CRPS has been assigned the code number 337.2. It has been classified into four categories:
(1) 337.20 - unspecified site
(2) 337.29 - other specified site
(3) 337.21 - upper extremity
(4) 337.22 - lower extremity

In 2006, RSDSA put out this article about working with the TSA:

RSDSA has been asked by a person with CRPS how she can avoid a symptom flare-up, resulting from being patted down by security personnel at airport security checkpoints.

We suggest that prior to flying, you obtain a recently dated letter from your physician addressed to TSA Employees/Security Checkpoint Supervisor stating that you have been diagnosed with CRPS, a neurological syndrome characterized by intense chronic burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch and he/she recommends that you be scanned by an electronic scanning device rather than being physically searched which will cause intense pain and prevent your traveling.

Other ways to avoid a pat-down is wear clothes that are designed for
traveling such as:

Shoes with no metal shanks or eyes for laces
Skirts, pants, shirts, etc. with no metal zippers or buttons (plastic only)
No belt buckles or metal fasteners or if the passenger is wearing a
belt with a metal buckle, all they have to do is to open up the
buckle and allow the TSA agent to "feel it"
Sports bra with no metal hooks/eyes or strap adjustment.
No jewelry.
Keep all keys, cosmetics, money and change in a belt pouch or purse that will be placed in a tray for x-ray clearance with a minimum of
fumbling.
Nothing metal goes in pockets--have everything that would be in your pockets, put into a clear plastic ZIPLOC bag. A few of the airports now have such bags available for this use and 9 times out of 10, you can keep the bag

The TSA agent may ask you to go over to seat down area and remove your shoes. THE TSA AGENT IS REQUIRED TO GENTLY REMOVE YOUR SHOES AND PUT YOUR SHOES BACK ON WITHOUT CAUSING YOU ANY PAIN. Just chat with the TSA agent about your shoe removal and replacement needs. Most are very helpful...except at San Francisco Airport where they are getting the most complaints of any TSA-maintained airport in the states.

Metal-detector "safe" clothing for travelers is available and advertised as such on the following two websites:

Travel Smith
Magellan's
As a general rule, most of the TSA people are good at understanding the needs of travelers with disabilities.

RSDSA board members Dr. Peter Moskovitz and Wilson Hulley contributed to this announcement.

the view from the big round bed

Scoop, by Saba Italia

I love men. 

Big, burly men.  Decisive, friendly, efficient men.  Cheerful, joshing, smiling men.

So... even with our living quarters a complete, disassembled mess, this lovely group of tonsured monks -- our flooring installers -- have kindly advised me to plant my booty in the middle of our half-mile wide round bed and just relax.  It's the polite way of telling me to get out of the way. 

They are working around  me, literally.

Our menagerie is less than thrilled.  I don't think Dobby has blinked in several hours.  I actually had to poke him with my GimpGrabber to make sure he was alive.  Even then, he didn't blink -- he allowed one ear a quick twitch, that was it.  I offered him his most coveted treat -- a salmon Pill Pocket, of all things -- and it is still sitting there by his front paws. 

But we are not bereft of the "awwww" factor, because Marmy Fluffy Butt and her brother, Uncle Kitty Big Balls, who usually are not the friendliest of siblings, are so intertwined that it is hard to tell where one ends and the other begins. Still, Marmy's huge fluffy butt provides a big hint to the edges of their ontological division.  Uncle Kitty Big Balls' tail is more like a stiff bottle brush and though it is a perfectly fine tail, it doesn't hold a candle to her monumentally large and wispy rear end.

What do I think of the flooring?  Have you ever spent so much time choosing and pricing some home improvement material that by the time your project is finished you just don't care anymore?

Well, have you?

I like it.  I don't love it... yet.  It's very different from the plush, toe-grabbing carpet we're used to -- although  we never quite felt comfortable dropping crumbs on the museum-quality medieval silk tapestries that the Haddocks use as area rugs and bath mats.

Fred is saying all the right things:  "It makes our rooms look bigger!" being his favorite.  His next favorite thing to say is "Now we're gonna hafta paint!"   [When pigs fly will Fred willingly take up a brush... No, he is thinking in terms of gesso and murals.]

I didn't sleep much due to... oh, what was it?  Oh, I remember!  This soul-sucking pain!  So I caught up on world news, then read until my eyes failed to focus.

Events in the middle east are breathtaking.  As I watched USAmerican news coverage of the revolution in Egypt, what also proved interesting were the attitudes toward this nascent democratic struggle.  It makes people nervous.  Raucous applause for the Egyptians peaceably protesting in the streets and squares against the decades of repression under Hosni Mubarak alternate with worried whispers about the "direction" and "allegiances" the new Egyptian leadership may assume.

Then there is the "thug" factor.  Middle eastern "thuggery" shares many characteristics with the mysterious "outside agitators" so common to western protests.  Mubarak's paid plants add another element of confusion to the mix of the police and the military, the secular and the religious...

Anti-government protesters are heroic in the face of violence -- police vans plowing through crowds, snipers shooting from bridges, human rights activists detained, journalists harassed and arrested. STRATFOR reports, via Egyptian newspaper Al-Mesryoon, that 

Leaders from Egypt’s ruling party, members of the People’s Assembly and security commanders attended a secret meeting in Alexandria on Feb. 2 and made plans to mobilize hundreds of 'thugs' to attack demonstrators and disperse them by force... According to sources that attended the meeting, a number of People’s Assembly members offered 250,000 Egyptian pounds ($42,700) to finance the attack, while security officials offered hundreds of clubs and explosive devices for use against the demonstrators.

It will be interesting to watch the wrangling for position in the political vacuum left by Mubarak, particularly the role of the changing Muslim Brotherhood, a popular and populist group about which, I think, western attitudes will evolve -- in spite of the not-terribly-insightful journalism of CNN's Eliot Spitzer (certainly my choice for moral and political guidance) and Piers Morgan, Insta-Pundit.  I am not suggesting any pardon of violent acts such as Sadat's assassination -- just a willingness to assess them according to their present context. They are, for instance, supportive of Mohamed ElBaradei.  Unfortunately, the group's growing temperance and history of good works in the social arena can be obscured by a single mention of Al Qaeda and the Brotherhood in the same journalistic breath.

Last night, Spitzer elicited a pledge against violence from MB representative Mohamed Morsy, and even acknowledgement of Israel's right to exist.  Morsy said:

We are not against people. We are not against mankind. We are not against the Jews. We are against Zionism. We are against torturing the Palestinians.

Immediately, CNN posted the subscript "Muslim Brotherhood against Zionism"!

Ah... the smoke alarms are going off.  That can't be good.  It looks like I must budge from this comfy bed and go see what progress has been made and whether there actually is threat of a fire (no, there is no fire, only some smokin' saws!).

The Monks are about half done and are calling it a day.  We have only another 24 hours or so of disorganisation and chaos. 

Peace out.  Later, if I've the energy, I'd like to share my enjoyment of my current read, The Liar's Club: A Memoir.  Talk about revolutionizing the genre!

What a mess...

It's a crazy time.  Given the extent of the wackiness around here, and the opportunity for more, I'll not be blogging for a few days.

Today I see the orthopedic surgeon, my old friend.  (I slept last night with my mp3 player set to repeat and repeat a Michelle Shocked album... "my old friend" is running around my brain to the tune of Anchorage... anchored down in Anchorage....

I took the time to write to my old friend

I walked across the burning bridge

I mailed my letter off to Dallas, but

Her reply came from Anchorage, Alaska

She said Hey girl it's about time you wrote

It's been over two years now my old friend

Take me back to the days of the foreign telegrams

And the all night rock 'n rollin' hey Chel

We was wild then

Yeah, well. So I'll be humming and buzzing along with the x-rays today.

Then we are rushing about Tête de Hergé like freaking maniacs, getting groceries (I am on a goodly dose of antibiotic and we are out of plain, lowfat yogurt.  Also vanilla extract, bread, and milk.  Not to mention caffeine-laced diet colas...) and a few other items of a more esoteric nature.

Then we are flying home to finish disassembling our wing of The Manor, Marlinspike Hall.

Why?  Are we being thrown out onto the streets?  If so, wouldn't The Brotherhood down the road take us in?  Yeah, couldn't we just crash at The Monastery?

No, we're not imminently homeless, we are just having some 16th century reclaimed beams and timbers -- heart of pine planks, specifically -- put in as "new" flooring here in our tiny section of the world. 

And don't knock The Cistercians, even in jest, because they're doing the installation...

What I really wanna know is:  Who bought all these damn books?

I have so much to do and such little space and time to do it in.  Also, I tend to injure myself.  Immediately.  Within five minutes of packing and piling and sorting and moving...  Yesterday, I spent the afternoon with tears rolling down my red, red face,  while putting my arcane collection of Objectivist Poetry into flimsy bags and boxes. 

When I was done, I heard this from My Darling Cohort:  Sweetie Pie?  Are you okay?  Do you need any help?

Wrong!  Well, only partially wrong.  Wrong in the sense that I implied that My Darling Cohort was not assisting.  Because he did.  A lot.  As in, a whole lot. 

Okay, I lied.  His offer to help preceded my headstrong and tearful attempts at packing up my tiny office. 

He's a good boy, is Fred!

The Felines are freaked and part of today's plan entails finding three carriers that we can safely stash them in, as the monks, who love them to pieces, tend to try and sneak them over the orchard wall, tucked in their voluminous robes.  When we retrieve them they reek of incense and garlic.

I have beaucoup medical stuff on tap for Monday and Wednesday of next week, too.  ["Too"?]  The thoughts and worries about the subanesthetic ketamine treatment never really leave my mind.  I am pinning a shitload of hope on this procedure.

So. Be good out there.  Stay warm, stay well, be happy.

The next time I talk at you, I will be able to zip around the place without the wheelchair meeting so much impedence in the form of medieval tapestries and persian rugs.  I'm gonna redefine the speed of light.

***  *************************************************************************  ***

Okay, so... here I am blogging again, less than a day after swearing off the activity.  I've said it before, and look!  I am saying it again -- I need one of those pensieve thingies, like Albus Dumbledore had stashed in his office.  The basin with swirling, shimmering vapors.  Thoughts as strings to be pulled out of the head, twirled on the end of one's wand.  Though I suppose a chopstick will do, in a pinch.

The Pensieve has multiple functions.


At times, when one's head is so full of thoughts that one cannot hear oneself think, it is useful to be able to take some of those thoughts and literally set them aside. The practiced Wizard can extract a thought from his head and store it in a phial or in the Pensieve for another time. If it is in the Pensieve, it is possible to stir the thoughts stored there together and look for patterns. It appears that the wizard has the choice of extracting an entire memory, leaving no trace of it in his head, as Professor Snape does in Harry Potter and the Order of the Phoenix, or extracting a copy of a memory, retaining the original, as Professor Slughorn does in Harry Potter and the Half-Blood Prince. It is also apparently possible to edit these extracted memories, though it is a difficult task and one which is often not done well.


If one places one's head within the Pensieve, one becomes immersed in a memory that is stored in the Pensieve, and is able to relive it as if one was living that time over again. Harry experienced Professor Dumbledore's memories of the Wizengamot trials of several Death Eaters this way in Harry Potter and the Goblet of Fire, and Professor Snape's memories of Harry's father in Harry Potter and the Order of the Phoenix.


A thought or memory stored in the Pensieve can, with proper stimulus, appear to nearby viewers as if standing on the surface of the basin. Professor Dumbledore used this technique to show Harry the prophecy that had been made about him, in Harry Potter and the Order of the Phoenix, and it is used in Harry Potter and the Half-Blood Prince when full immersion in memory was not needed.


It is also possible to take another person's memories, place them in the Pensieve, and then enter them to relive them as if one were the person whose memories you have just added to the Pensieve. Harry and Professor Dumbledore do this a number of times in Harry Potter and the Half-Blood Prince in order to determine the salient points of the early history of Tom Riddle, or as he later styled himself, Lord Voldemort.

This blog is my pensieve.

So... although we spoke of it briefly the last time I saw him, it sort of blew my mind -- and all its twirling little vapors -- when the surgeon offered up an inverted total shoulder arthroplasty as my sole option for my left shoulder.  He is fabulously talented, so to hear him call something "difficult" was scary.  It looks like this... and this looks WEIRD!

I guess I sorta didn't believe him in October when he first pitched this.  Or I developed amnesia.  The Good Doc says I've not much left to work with -- remember (someone has to), I have rampant avascular necrosis going on as well as osteomyelitis.  Oh, and I am now missing one rotator cuff.

No problem!

He's been such a savior to me, this guy, that I simply don't believe there is a technique or an obstacle that he cannot conquer or overcome.  I mean, he's done... let's see... 8 of my 9 shoulder surgeries. 

We were doing a pre-exam chat -- I was bemoaning the mess at the manor, the monks and the flooring... then the ketamine infusion therapy popped in my head, and consequently, out of my mouth.  But instead of giving him some background, or even notifying him that we were leaving the discursive region of home improvement and religious adherents for the vague regions of dissociative drug therapy, I just blurted:

"Guess what!  I'm gonna do ketamine!"

And his eyes bugged out.
And he opened, then closed his mouth.  Several times.
I could see the confusion and what may have been a burgeoning certainty of my extreme moral turpitude spread across his usually composed visage...

So I explained.

Which made it worse.

He thinks I am nuts for doing this.  Well, ptooey on you, Fabulous Orthopedic Surgeon!  Ptooey, I say, on you!  Then he went on and on about this upside-down, spikey prosthesis -- only an option, of course, if the joint space and long bones are free of infection.

Why am I always so confused?  (No, I am serious.  Why?)  Is there a cumulative but late arriving deficit that hits a person after so many surgeries, after so many foreign bodies are implanted, after nine years of insufficient sleep?  After all the pain, fevers, sweats?  How is it that I can block out such important information?  Denial?  I don't think I am in denial about anything, but then who does?  Do you know that last week, I managed to forget entirely that I have an "aortic root dilation" of growing dimensions -- now sitting right at 5 cm..  I got there because of a run of something or other, that ended in about an hour of trigeminy, and this thought:  "It would be so nice to have a heart rate under 112..." We are so wrapped up in stopping this infection that we haven't even scheduled an echo.  The last one was in ICU back in... July 2009.  Whoa.

Just what I need to indulge in:  more catastrophic thinking!  (Thar she blows!)

See?  I DO need a pensieve -- just to get rid of boring, scary, fruitless thoughts about stuff I cannot do crap about. 

Okay... I feel better.  The reverse shoulder option will only come to be when/if we rid my body of sneaky pathogens and the pain reaches the I-CAN'T-STAND-IT-ANYMORE stage.  With careful coaxing, I can stand a whole hell of a lot!

The title of this post stands unchallenged:  What a mess...

dear, darling kate

when news was not joyously swift in coming after kate mcrae's mri today, i think everyone in her extended network knew that the news was not good.

from her caringbridge update:

Never have words been more difficult to pen. Never have our hearts felt the angst of pain quite like today. I hoped to never write these words. I prayed that our hearts would never feel this torment. However, today, we received devastating news. There are new spots on the MRI, at least one on the other side of our daughter's brain.


The all too familiar feeling of nausea followed by haziness settled over our bodies. We vasalated between bouts of sobbing and looks of disbelief. We felt trapped in a horrific nightmare until the sound of small sobs shook us loose. Our sweet Kate was huddled up on the table sobbing into her arm. Her little body shook for about half an hour. Tears of pain, and fear letting loose. She was scared. Our baby was scared and all we could do was hold her.


Through the tears Kate slowly got out the words, "why". "Why daddy, why? Why hasn't Jesus healed me?" The sound of heartbroken sobs all that could escape from her daddy's lips. Crys of pain.


I have rarely felt angry this past year and a half. About every other emotion under the sun, but not very often anger. Today I was angry. I had promised Kate we would swim with dolphins together. We had dreamed of Hawaii together. We have so many plans. And yet now this. Words could never detail the hurt.


So tonight we sit in disbelief, or horror may be more accurate. We had gone into the MRI very hopeful. She was making gains on all ends. She had no obvious symptoms. We had one of our favorite anesthesiologists for the scan. She held Kate in her arms and sang to her as she held the mask over her face and put her to sleep. I was so grateful she cared for my baby. After the MRI we saw her again. I struggle not to try and interpret everyones body language after a scan. However, her eyes were watering. She said it must be allergies. My heart suddenly felt the icy grip of fear, what if something was seen. I tried to dissuade the feeling, the panic, for the next few hours.


Our meeting with the neurosurgeon relayed the devastating news. We cried until the meeting with Kate's oncologist.


Tomorrow the tumor board will discuss her scan and the best way to determine wether or not it is definitely cancer. Most likely Kate will be undergoing a PET scan as soon as possible. They will also be discussing the best possible route for us to take if it is tumor. They will be contacting institutions around the country for open studies, and anything that could possibly hold some hope for treating a recurrance.


We are crushed. Kate is heartbroken. And we need God's miraculous intervention. Please pray. Please ask others to pray for our sweet baby. I know she is one child among many battling. But she is our daughter, and she is a sister, and a niece, and a granddaugther. Please pray that God would spare her from this disease. Please.


Please pray that after further investigation they would determine it not to be tumor. We understand the likelyhood of that is slim. But please pray. Please intercede on our behalf.


Things will be moving quite quickly, we hope, as if this would be tumor, time is not in our favor.

as i have mentioned before, caringbridge is such a great "place" for sharing. why don't you go and share your strength with the mcraes, as they have been so generous in sharing theirs?