Veni, Vidi, Ventus --
The randomly chaotic and crafty scribblings of a deranged, wannabe artist allowed too many colours in her Crayon box.

Surgeon General's Warning: Some content of "From Pooka's Crayon" may not be suitable for: work, blue-haired little old ladies, the politically-correct, rabid moonbats, uptight mothers, priests, chronic idiots, insurance claims agents, Democrats, children, small furry quadropeds from Alpha Centauri, or your sanity.

Tuesday, February 26, 2002

Just skip this post.

Why do I insist on wanting to know more? Is it out of the hope that someone somewhere will say something better? That someone will give me some hope on this?

I feel pathetic right now. This is just ... overwhelming. Really. And it's a train wreck because I can't make myself walk away and stop reading it. I'm posting it for me, and I'm not even sure why I'm doing it.

No one else needs to wallow in my pool, but please feel free to push this whale back into the water.

A footnote: "b RSD causes TMJ disease and vice versa. The two usually coexist. Injections or operation for TMJ disease due to RSD aggravates the condition."


"The dysfunction changes to dystrophy manifested by edema, hyperhidrosis, neurovascular instability with fluctuation of livedo reticularis and cyanosis - causing change of temperature and color of the skin in matter of minutes. The dystrophic changes also include bouts of hair loss, ridging, dystrophic, brittle and discolored nails, skin rash, subcutaneous bleeding, neurodermatitis, and ulcerative lesions.

It is accompanied by sympathetic dysfunction in all four extremities as well as attacks of headache, vertigo, poor memory, and poor concentration. The spread through paravertebral and midline sympathetic nerves may be vertical, horizontal, or both. "

Shit. I'm apparently closer to the evil 2 than I thought. Well ... the bruising, ridged nails and breast ulcers are accounted for, aren't they?

Oh. Well. That settles it, doesn't it? Apparently the number of stages depends on the one writing the article, and it goes from 3-4 depending on the author. I'm *well* into Stage 2 by most of them and partially into 3. It looks like they split stage three into two levels, one having the most extreme and "final" misery of this damn thing.

"RSD is a definitive chronic pain syndrome called by several different names such as reflex sympathetic dysfunction, (stage I), reflex sympathetic dystrophy (stage II), "

Man, I have to stop reading up on this. This is depressing enough without knowing more.

"RSD is accompanied by a certain degree of inflammation in practically all cases. This inflammation may be in the form of swelling (edema), skin rash (neurodermatitis), inflammatory changes of the skin color (mottled or purplish, bluish or reddish or pale discolorations), tendency for bleeding in the skin, skin becoming easily bruised, inflammation and swelling around the joints as well as in the joints (such as wrists, shoulders, knee, etc.) which can be identified on MRI in later stages, and secondary freezing of the joints.

The fourth component and pre-requisite of diagnosis of RSD is insomnia and emotional disturbance. The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain. The disturbance of function of these parts of the brain results in insomnia, agitation, depression, irritability, and disturbance of judgment. Insomnia is an integral part of an untreated RSD. So are problems of depression, irritability and agitation. "

And ...

"This can be in the form of flexion deformity of the extremity, difficulty with walking, flexor withdrawal of the muscles of the extremity, and lumbar and cervical paraspinal spasm. As a result, the patient develops muscle tension headaches, as well as spread of the muscle spasm to the facial muscles with resultant stress on the temporomandibular joint (TMJ) and severe pain and spasm around the TMJ.

With passage of time, the same phenomenon results in chronic trauma to the TMJ as well as clinching of the teeth and trauma to the teeth. The patient develops severe pain in the distribution of trigeminal nerve (sensory nerve for the face) and develops moderate migrainous vascular headaches (trigeminal vascular headaches). In later stages of RSD the immune system becomes disturbed, and the patient develops poor oral hygiene and dental deterioration.

Long-standing unilateral (one sided) spasm of cervical paraspinal muscles causes increased input of pain into the upper portion of the cervical spinal cord. As a result, a referred pain develops with resultant facial pain and secondary muscle spasm around the TMJ and the jaw. The same referred pain causes migraine headaches, TMJ pain and chronic stress on the teeth with dental deterioration"

Can someone please explain to me how every single doctor until now MISSED all of this?

Look at all the fun of the final stage!

1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes.

2. Intractable hypertension changes to orthostatic hypotension.

3. Intractable generalized edema involving the abdomen, pelvis, lungs, and extremities.

4. Ulcerative skin lesions which may respond to treatment with I.V. Mannitol, I.V. Immunoglobulin, and ACTH treatments.Calcium channel blockers such as Nifedipine may be effective in treatment.

5. High risks of cancer and suicide are increased.

6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.

RSD will leave significant residuals and will stay with the patient for the rest of their life under the following conditions:

1. Misdiagnosis.

2. Delayed diagnosis after two years and longer.

3. Additional trauma due to surgical procedures at the area involved with RSD (e.g., "tarsal tunnel", "carpal tunnel" surgery "rotator cuff tear" surgery).

4. Prolonged improper treatments such as ice application, inactivity, abuse of narcotics and benzodiazepans, etc.

5. Sympathectomy, amputation, or insertion of a needle in the area of scar of RSD for injections, blocks, or other purposes.

6. Prolonged litigation with resultant emotional aggravation and delay in treatment.

All right. This is me just walking away. No more.

The hard part of the cold front has just hit, so I'm gonna crawl into bed and pretend I'm not freezing and that my hands aren't starting to burn and swell despite the meds.

Saturday, February 23, 2002

Well. So. Now what?

Finally got some sleep. A little more clear-headed today.

While the drugs didn't put me to sleep, once I got there, I *stayed* asleep for a change. Woke up and got up without much more than the usual "omigod I have to move now" aching. No sign of drug hangover after beginning dose of Neurontin.

So busy being in shock yesterday over the diagnosis that I pretty much forgot to mention everything that did happen.

Nerve damage in my left hand is confirmed now. The good news is that nerves can regenerate, if they have a chance to stop being damaged. Therapy and the new meds might give me a chance to be able to hold a pen again.

My Raynaud's (which fibro can mimic) is actual Raynaud's and relatively severe. It's a problem with capillaries not doing their job right, so blood flow to extremities can be limited. Cold aggravates it something awful -- just holding a cold can of soda can spark it -- so one of the main treatments is to make sure the extremities stay warm. Gloves and socks, man.

I need to find gloves that work with it AND the RSD. So here's what I'm looking for, if you stumble across them. I need a glove without thick seams in the fingers or no fingers at all, rather like the arthritis gloves with no fingers, that don't stop at the wrist. I need ones that go to mid-forearm at least. Just cutting the fingers out of long gloves won't work because the seams will still get in the way of typing and other fine motor skill activities.

My FMS is actually relatively minor. Yes, I do have reaction in almost every trigger point when tested, but it's the RSD that really screws me over on pain. The IBS is really the worst of the fibro effects for me.

Knowing what part of the fog is and isn't fibro is easier to tell now. Now that I KNOW what to look for, I have a good idea of which is currently making me STOOPID, FMS or RSD. Fibro is more of a general ditzy fog with the blank stares and mild forgetfulness.

It's the RSD that makes me completely unable to parse and understand things sometimes -- like being able to file away and recall small details. Not being able to remember the LJ cut-text code, no matter how many times I look it up, is one of them.

RSD is usually linked to some sort of trauma (Reflex Sympathetic -- like post-traumatic stress, this attacks the nervous system). Surgeries can do it as well as injuries. Considering how many surgeries I had in a VERY short span, it's possible that sparked it. We know that I have some weird strain on my neurological system anyway. Between the Cubital Tunnel, the nerve damage in my hand, and the weird injuries linked to nerves and capilliary disfunction in my feet (the little weird bone infection in my foot spawned by them and I can't even remember what it was called anymore), it's not real surprising.

However, RSD usually manifests in the single, main traumatized limb. I have RSD, quite pronounced, in all four limbs, plus my head -- I do the weird swelling blotchy burn on my face and neck as well. RSD can spread in time across the body to other limbs if uncontrolled like mine has been.

But I didn't think about it until we'd left the doctor's office and DG brought it up. About 13 years ago or so, I had a really bad riding accident. A friend of mine and I were out on her horses and had to cross a road to get to the next field. Like dumbasses, we rode across it (two lane asphalt) instead of leading the horses. A car full of frat dicks drove by and honked.

The honk spooked my mount. I was thrown backwards off the horse, my right hand tangled in the reins. I hit the asphalt head-first. Knocked me out for a short time. Broke two ribs, my pinky (from the reins) and had one hell of a concussion. Roo said that she honestly didn't expect me to be alive at all. She said that when I hit, my head made the wet "pumpkin drop" splatting sound.

Direct trauma. Head, neck, spine. It could explain everything, including some of the more extreme memory damage. All my headaches, the migraines just getting worse, the dizziness that I've lived with for years, all of it.

It explains why none of the usual suggestions of causes and treatments haven't worked.

It explains why things like Flexeril and narcotic meds don't work. My brain doesn't process them correctly. It explains why my trembling is SO bad, why the muscles seize an I lose control of them.

Hell, I fell out of the computer chair last night when my leg seized. I hadn't had one that bad in a while. Total loss of control so bad that it literally threw me out of the chair with no chance to stop it before I hit the floor.

We'll never know what brought it on for sure. I do know that the splotchies and burning did NOT show up until after the accident, around the time that DG and I married. I've done it since we got together, which was after the fall. I don't remember it ever happening before.

It has also been manifesting in my face during that time -- which is why they always suspected lupus but I always tested negative. I get the butterfly rash, raised and puffy and red. But it's the RSD.

I am going to ask, once we get the therapy started and insurance is caught up with the program, for an MRI. It's possible that it might tell us more and help us figure out how close I am to the danger zone of stage two to three.

I don't like to lose. Liya and I have that much in common. I didn't give in when the doc told me I WOULD lose the use of my left arm and hand without surgery. I said Let's Do it without even thinking hard. Fix it.

And after the surgery, I fought to get it back. My recovery was so spectacular that I didn't have to endure the months of therapy to bring my hand back to full. I had regained full range of motion in my arm by the second visit after the staples were taken out.

If it means that half of my day is spent in therapy to try to force the RSD into remission, so be it. I'm not fool enough to think that it won't come back. I've got too much else wrong with my body, and the first new trauma can and probably will set it off all over again and then I get to repeat the therapy.

But I will not let it win.

I may be a mouse, but I'm a damned stubborn mouse.

Pretending to be

Just me, Pretending To Be.

Well. Nothing has really changed. Really.

I didn't just find out that I have something terminal, that I'll finally get lucky and the miserable pain will actually get to end -- how's that for a silver lining, but no.

I finally have a diagnosis that EVERYONE will take seriously on top of other Bad Things. The words "possible remission if we've reached it in time" are scary.

BUT Talk about no bloody respect. No, it can't be nifty and KILL me or anything, no, it's happy with just MAIMING my fat white ass and letting me go. Like branding a fucking cow, here's your wheelchair, mooooooooove along.

"Might as well put a potato on a string and drag it through South Boston ..."

Nothing has changed. I'm still in the same pain I was. I'm not any more fragile, I'm not going to suddenly crack and go climb a clock tower (face it, I couldn't make it up ten steps) or drop dead.

I'm still me, for whatever that's worth.

God has seen fit to once again prove to me, however, that not only does he have a really really sadistic sense of humour, but he really likes to draaaaaaag the joke out.

I have Four, count them, Four conditions that will not just up and vanish. Asthma is fickle. Fibro has No Cure. Raynaud's has no cure, plus the groovy possibility of bodily dismemberment -- call the gang, green is here. RSD can take all four of my limbs away from me, eat away at my brain and leave me as some sarcastic fat chick in a wheelchair with cybernetic drug pumps stashed in her body.

They'll push me and stab me and burn me and scar me until something ELSE finally makes me drop dead. How @$&*#$ ironic.

Who the @#$*& comes up with this? What do they do, have some sort of Predestination Bingo Night, Winner #$#*& takes all?

Coldsmoke also wants to know why the same doofus that cooked up these hairbrained plot twists of mayhem had to sink the final nail in the coffin with blue balls.


Because you don't even get a coffin, in fact, you just might live forever (or at least it will seem that way) because you're going to 112, tooling around in your little wheelchair cybercoach, and some fat bastard in a bus is going to run your ass down just as you finally beat that very boss in ....

Aw, game over.

Uh. Shit. This was not where this post was meant to go, but there it is.

I never really contacted with the denial stage here. I went from relieved to stunned, to borderline panic to bloody annoyance and finally to generally taking the whole thing in with the same sarcastic crap that's seen me through the last thirty years and seems determined to drag me kicking and screaming through the next thirty more.

If you got to laugh -- or at least crack a grin, yes, you the Doo of Voo -- then I guess my real work here is done.

And until that time when the thundering grey dog comes bearing down on your ass with all the forces of heaven and hell behind it and you're looking for a port in any storm and not even God appears to be listening, you just keep your hand on the grip because when you're facing The Man at last, you'll know he's finally played his last card. You just do what old Jack Burton does ...

Oh come on, what? Do you want to live forever?

I'm Channeling Me, Pretending To Be
pooka who would like to point out to the world at large that SHE IS STILL FREAKING AWAKE!

Friday, February 22, 2002

Take 200 of these, and don't call me

I've seen gourmet recipes shorter than the instructions on my new meds.

Prednisone to start to control the RSD. Yum. Nasty foul stuff. 60 tabs, well, at least I'll be breathing well. Label print was switch to a font smaller than the "X refills remaining" text to fit it all on.

Excuse me, but I'd like to make claim that I deserve to use the F word here, thank you.

FUCK! The damn bottle Prednisone has a worse coating than the dose-pak ... ie, it powders slightly in mere movement, so when you take one ... WHAM, you gotta shave your tongue and it feels like the floor of a NY movie theater. This is gonna be a LONG three weeks.

I'm currently considering Death as an option.

Itty Bitty Elavils to up me from 75 to 100. She was Not Happy with the wussy Elavil dosage at all, especially after finding out how long I'd been stuck there with it not helping. She gave me enough Elavil at 25 mg that I can take 125 if the 100 doesn't work after a few days.

I also got ... more Zanaflex (YAY, SAMPLES!) -- which Cigna should cover automatically because RSD is a seizure-class disorder.

And the crowning touch for my nighttime digestion ... Neurontin. Starting at 100, and working up to 200, then 300, all in itty bitty precise directions on the itty bitty label.

Dude, I CAN'T fog and forget this. She is SO cool to cover my ass like that.

Course, it doesn't change the fact that YES, I AM still awake!

Or that it still hurts to move. Or that it still hurts to NOT move.

But ... having the spasm/seizure swelling splotchy scarlet and purple Pooka furnace kick in RIGHT THERE at the office ... is Priceless.

For everything else, there's a really big hammer.

Take one as needed.

Welcome to the Last Day of the ... no, wait

Okay. Some days you really wonder why you crawled out of bed. Especially when there's a doctor's appointment involved.

Yes, the Pooka has Fibromyalgia. It's a "minor concern" right now ...

Think and chew on THAT phrase for a minute.

Yes, I have confirmed Raynaud's Phenomenon, Primary -- severe. "Why in God's name do you not have socks on your feet, girl?" I got my butt chewed for Birks. Course, DG DID lie to me about how warm it was outside. I knew I had it, and knew it was pretty bad, but even she seemed impressed by the degree. My hands and feet performed their gold medal skate for the doc, doing the whole shebang.

Cuz, um, Raynaud's can cause gangrene and your fingers and toes can rot off if you don't keep them warm enough so the blood will circulate. I'm supposed to wear gloves and socks as long as it's below 70-75. Like, fingertip to elbow gloves to help with ...

This is where I sort of lose things.

The Pooka has RSD. Reflex Sympathetic Dystrophy.

It doesn't get any better than how it sounds right there.

This post gets really long after this, going into details about RSD.

RSD is often progressive. It's also incurable. It can be treated, but many patients (that don't kill themselves, I looooove how the notes point that out -- "Emotional depression developed to such a degree that suicide was the final outcome in many of the cases." -- yeah, nice) end up in wheelchairs, with implanted drug pumps just to make it day to day.

Burning Pain, aching pain, shooting pain, swelling, limited mobility, hyper-sensitivity to slightest touch, withdrawing from commotion, short term memory loss, depression, living on a tight rope between doing too much, causing pain, and doing too little, causing pain, these and many more are symptoms of Reflex Sympathetic Dystrophy Syndrome.

As RSD progresses, the abnormal pain of the sympathetic nervous system has an effect on other areas of the body and can result in total disability as muscles, bones, skin and the autonomic immune system become involved.

The first indication of RSD is prolonged pain usually more severe than the injury. The symptoms are severe burning pain in a localized area, intense sensitivity to temperature and light touch, and a color change to the skin.

There are several stages to RSD, which progress at different rates in different people. Initially, there is swelling and redness in the affected area.

Next, the area becomes blue and cold, with increased pain and stiffness of ligaments and joints, and Osteoporosis may become evident.

Finally, there may be a wasting of affected muscles, contraction of tendons, and a definite withering of the affected limb. In all of the stages, severe chronic pain continues to be a major complaint.

Many patients who are not treated early will experience spread of the disease and this may become a lifelong problem. Even with early treatment this may become a chronic condition.

I wasn't caught early. I'm between Stage One and Stage Two of the syndrome.

Treatment can send RSD into remission. It may subside for years and then recur with a new injury.

There are many other symptoms that an RSD/CRPS patient may have, including movement disorders (difficulty starting movement, increased tone, increased reflexes, tremor, muscle spasms), weakness, fatigue, skin rashes, frequent infections, migraine headaches and others could be found as more data is accumulated.

(Remember my mystery flush and hives? I was going into a flare up. Now I know. And knowing is half the battle. Too bad I'm gonna lose the war.)


Pain is the first and primary complaint, described as extremely severe and burning & aching in nature
Swelling and joint tenderness
Loss or diminished motor function
Muscle spasms
Increased sweating
Changes in skin temperature and color
Bone softening - patchy osteoporosis

The disease causes constriction of vertebral arteries resulting in poor circulation to the brain stem, this in turn causes poor focusing of eye muscles, and poor balance, dizziness and migraines.

This constant pain in the limbic system (Frontal and Temporal lobes) causes poor memory, irritability as well as insomnia. Antidepressants such as Trazodone or desipramine and better control of the pain seem to improve these symptoms. This goes along with paravertebral and epidural blocks.

The person suffering may develop abnormal function of the sympathetic system causing constriction of the blood vessels to the brain. When the blood vessels are constricted in the distribution of vertebral arteries in the cervical spine and in the distribution of the blood vessels providing circulation for the brainstem, the person develops attacks of dizziness, white spots, migraines and difficulty focusing with the eyes. All of this is due to the brainstem dysfunction, which has the responsibility of coordinating our eye movements.

Many patients develop hostility towards any individual coming in close proximity, reflex from trying to protect affected hypersensitive limbs from contact.


I get to deal with fibro which is aggravated by the RSD. Mmm, double the symptoms, double the pain, double your FwordI'mstillnotusing fun.

Now if you'll excuse me, I'm going to go indulge in a completely out-of-character screaming fit of hysterics.

.... appends.

NO, wait, there's more! I forgot the one bright point (other than an answer for so much unexplained and ignored symptoms that have been wrong with me for years).

I was told to .... NOT avoid caffeine. Yes, yes, brothers and sisters of the sacred bean. Coffee may actually HELP the Pooka, balancing out all the weirdness that makes me shake and shimmy like a big ole vat of Jello.

No, wait. That was just me trying to put on my jeans. Never mind, carry on.

Tuesday, February 19, 2002

Half a Brain Sandwich

Apathy. Ya know I couldn't care less.

I think that's a nice working title.

Feh. All right, I'm really only posting to give Sammi something new to read. Not that this will break any literary records or set some sort of fecking standard for intelligent posting.

That's Witchy's fault. Now I'm doing the whole fecking fecking thing.

I need another quirk like I need another hole in my head.

Shit. I'm starting to put the feckin . between lines like I do in Android. Too much feckin time spent in there. Had to remove 3 . so far from here.

Cuz ya know I need another period like ...

Prolly should look up the early symptoms of menopause. This is weird.

Had to delete another fecking . there.

A Luna Bar, 2 liters of Mr Pibb and a pack of clove cigarettes has yet to be proven effective for anyone's RDA. I don't recommend it to anyone, either.
Double fecking dammit.
Okay, just shoot me. I don't care, fine, if they wanna be there I'll just bloody well let them stay so there how the hell do ya like them apples, huh?
What happened to the thousands of overrun Turbie Twist commercials? Not that I mind the absence, it's just weird to mark the fads and fluctuations of consumerism on television. Maybe it's just my not watching much TV that's to blame.
Mmmm, stomach cramp. Fibromyalgia taps me on the belly, just to make sure that I know it's still here.
Not gone yet.
Nope, I'm still here.
Okay, I'm leaving now.

I feel like half of a brain sandwich.

Starting to think Sybil's monitor problem deals more with a weird memory leak/strain. The green dancing ants don't show up during boot, or on any of the logo screens. They were here before my reboot, and are gone after it. Kinda weird.

I know its not the card, the other monitor was fine until it would no longer remain connected right.

"Ginger Spice closed mouthed on eating disorder" Do you suppose the irony in this headline was intentional? Seems a bit too clever for modern journalism.

Microsoft is being sued again. Anyone surprised? Dint think so.

Women's Team USA is kicking hockey butt. Yay.

Now where the hell are all the applications for a new lackey? Do you people have any idea how hard it is to be an efficient Evil Overlord without any fecking lackeys? What the hell is up with that?

I want my fucking minions, dammit.

Saturday, February 02, 2002

Cluex4, sold here, for only 19.95

There are people in the world who Do Not Get It.

Some of these people never will Get It. Ever.

Some have to be hit with a very heavy Cluex4 to Get it. Even then, they may have trouble with Getting It.

There are those who just haven't heard it put the right way, and so do not Get It but have a good chance of both Getting and Retaining It.

For those, here is a short, quick and dirty primer.

1. The world does not revolve around you.

2. No matter how hard you try, the world will never revolve around you. You're a person, not a red giant.

3. Attempting to force others to treat you as though the world revolved around you will only leave you lonely, bitter, and living with many many cats that will feast on your flesh when you die lonely, bitter, and forgotten.

4. Attempting to force others to treat you as though the world revolved around you will seriously Piss People Off.

5. Nobody likes a busybody. Really. Remember Mrs Kravitz? If you're too young to remember, we're too old to give a fuck. Walk away, m'kay?

6. The world does not revolve around you.

7. Approximately 99.9999999% of the world couldn't possibly care any less about your saga. No matter how you dress it and apply makeup, save the drama for your mama because everyone else is basically already bored shitless with hearing you do the same song and dance every fucking single day.

7b. You can only do the same thing so many times and still have someone believe it. People do talk. People do remember. It's called a Reputation. I know that's a big word. It means something important.

7c. Two or three different faces in public just makes you look stupid. Saying one thing on one front, then something entirely different on another, and saving a completely different face for another -- while keeping all public -- not only makes you look stupid, but everyone will eventually catch on that you're just about as sharp as a sack of wet mice because you can't keep your story straight.

7d. Lies don't get better with more embellishment. You will get caught.

8. "No," really means "No." It does not mean Yes. It does not mean Maybe. It does not mean "please whine at me till I change my mind." It does not mean "please stalk me and follow me everywhere and give me no rest at all until I finally tell you yes out of sheer fear for my life, or change my name, face, and phone number to avoid you."

No means No. No. N-O. Look it up sometime.

9. The world does not revolve around you.

10. The world does not revolve around you. I cannot stress this point enough.
Say it with me. "The world does not revolve around me."

Knew you could do it.