Hope Springs Eternal - PRAY!

Hope really DOES spring eternal. I was diagnosed with pulmonary fibrosis, for which there is no cure and very little effective treatment, two years ago. Since then I have struggled through many painful treatments on a difficult program employing Avonex and corticosteroid treatments, but while we THINK this regimen has slowed the progress of the disease, it has not halted it. Most people diagnosed with PF live between five and seven years, and the end is not pretty. Fibrous tissue forms in the lungs and gradually strangles off breathing pathways.

Today we learned of a brand-spanking-new breakthrough out of Rice University in Texas. Dr. Richard Gomer, professor of biochemistry and cell biology, has isolated a naturally occurring blood protein that prevents dangerous scar tissue from forming. The protein, which occurs naturally in our blood, has been used in tests on animals that were predisposed to developing fibrotic disease in the lungs. Serum amyloid P, or SAP, is actually WORKING to stop the progress of fibrotic disease in animals. Tests found that SAP treatment protected animals from developing dangerous scar tissue. This is the FIRST treatment of its kind.

This drug could potentially save the lives of people suffering from Cystic Fibrosis, Pulmonary Fibrosis, Cardio Fibrosis, Scleroderma, and possibly others.

Right now a company in Pennsylvania (Promedior Inc.) is engaged in animal testing, but has not yet set a date for the first human clinical trials of SAP.

If this treatment becomes available before the disease moves in many patients (like myself) who are currently staving off danger, we could survive. If SAP becomes available to humans the damage done to our bodies by PF will remain, but it will cease. That simply means this: we live. Unfortunately drugs are notoriously slow in coming to market in the US.

Since being diagnosed my life has been a weekly pattern of hope: shots, back pounding that is painful but necessary, exhaustion and other by-products of the treatment, and dim optimism that the torture will buy me enough time to make it to a breakthrough. The last hopeful treatment trial (in which I am still a participant) is showing that PF is slowed by these rather brutal treatments, but not nearly as much as we'd hoped. Yet hope we still do, and hope we will continue to do. Even those, like myself, who caught this disease early live with pain, side effects, and the grim reality that so far we hope in vain. We exist under the droning mockery of a ticking clock. We cope.

If this bright, shining new possibility proves as bright as predicted our willingness to face misery with determination may actually pay off.

Pray. We need this!

A Case of the Giggles?

Recently a little spat of opinion broke out between the all-mighty holy ground of Romance Divas and Mrs Giggles, a reader who has a badly written, but much visited review site. I've never been a fan of Mrs G. Her reviews are erratic, contain both a dubious relationship with the English language and a somewhat schizophrenic grasp of sentence structure, and occasionally verbose in an uncharacteristic show of vocabulary. Having embraced that first impression, I was hesitant to return.

I did, however, when I got wind of a few inconsistencies. It was initially simple curiosity, but it has always been in my rather cantankerous nature to poke things with sticks. I must say, for those who think G reviews books for no personal gain... you lack reading and critical thinking skills.

Check her out. I love to see that attention seekers get what they so eagerly stalk. I hope Mrs G is familiar with the adage about being careful about wishes. I had fun with it for a while, but this individual apparently does NOTHING other than post to her blog and respond to responses... and responses to responses... and ... gah! Now I remember why I was enjoying that long break from the internet!

Lemme know what you think, yes?

In Praise of Color Blind Ex-Marine Custom Decorators

There are some things that must be seen to be believed. Today I spent some time with an old (and I do mean OLD) friend. Petie and I have known one another since kindergarten, which places our friendship at 36-going-on-37 years. He's an absolutely brilliant photographer and artist.

One of the things Pete has been teaching me about photography is how to capture something other than pretty, but powerful. So today I was practicing "wandering" with my camera. I won't say where this house is, but it's about a 20 minute drive from home (15 if you drive like me). If you are the owner and have stumbled upon this blog... I salute you! Never has chrome yellow filled me with such a sense of awe.

For everyone else... I resized and cropped these photos directly from my camera. Nothing else has been altered. There's some stuff you can't make up.

Somebody loves both CHROME YELLOW and JESUS.



A LOT.



And... ummm... what does that say????



Nope. I read that correctly. Well... you have to admire his or her... errr... optimism.

Anyone interested in having their place redone by a very passionate, color-blind, extremely dedicated Christian former Marine? Didn't think so. :) Please insert your own "don't ask / don't tell" joke here.

Tights, Cape, and Attitude

My dad has often said that if I were a less honest person I could have been the world's most successful televangelist. As scary a thought as this is, he's probably right. I've always been a riler. I come from a long line of people who are pissed off by injustice, aggravated by ineptitude, and passionate about stirring the social pot to make changes happen. This does not, in fact, come with tights and a cape. That would be cool, though. I do try very hard to, err... use my powers for good.

Yeah, that was sacrasm, but only mostly.

Today I had a really nice riler-reward moment. A sweet kid who was working at my local shopping center got abused by a woman in his line. His crime? He called her "miss." She was five million years old and obnoxious, and began to dress him down for not saying "ma'am," which is technically the socially correct address, only in this day and age it's also archaic and somewhat insulting, depending on how anal you are. Doesn't bother me. But Granny Tightarse absolutely flipped at being called "miss," since she was a "widow of slur-garble-spew" years and a grandmother, and deserved "proper respect."

Forget, for a moment, that yelling at a nice kid who just wants to get through college and never scan coupons again is getting yelled at for calling her "miss." (By the way-- he called her back to the counter because she wandered off without her keys. Isn't that terrible? How insulting.) What really chapped my ass was the gall required by this beastie to be that rude over a word. This young man has no way of knowing she isn't a "miss,"

and while Ms. Manners would surely respond with advice to take a default position with "ma'am" in this situation, this is not a big deal. For anyone that abusive to even utter the words "proper respect" was just beyond the pale for this riler.

So I verbally bitch-slapped a senior citizen. I told her off. I pointed out her over-reaction to a tiny faux pas that, in 2007, is meaningless. I pointed out her failure to thank this young man for saving her the confusion and inconvenience of getting to her car without her keys. I pointed out her incredible rudeness in raising her voice, and that she was inconveniencing several other customers who had to wait for service while she had a hissy fit. She left in a huff, no doubt to go home where she could enjoy tea on her throne while her tiara was adjusted to fit her newly deflated head.

I realize that many who read this think I was being mean to an old lady. I was. I was also polite with my language, direct, and while I am being personally insulting here, in a setting of anonymity, I was not there, in a public place. She was wrong, and everyone was standing around letting her be wrong while a nice kid got a tongue lashing he didn't deserve. My personal view is that indulging people like Ma'am is actually doing them a great disservice. When I am a jerk I hope to have people I respect point it out so that I can learn from it. The experience is not pleasant at the time, but I become a better person in the long run. When twerpy, nasty, rude-arsed old battle-axes like Ma'am are tolerated and indulged, they get the message that they are allowed to be twerpy, nasty, rude-arsed old battle-axes. An AARP card is not a license to be a tottering nightmare in mothy wool clothing.

It earns you my deference, but not my complete and unquestioned allegience to your stupidity. You get doors opened for you and help loading the groceries. You don't get to kick puppies with a get-out-of-judgment-free-card.

I know rilers like me-- we, the leaders of angry-mobs-with-torches, those who whip others into a frenzy-- frighten the timid. Meek people are terrified of me.

I'll tell you a secret (glancing around to make sure only the entire internet is listening); I kind of get a kick out of that.

*snicker*

I did not become a rabble rouser to cause pain and discomfort. And for the record, I frequently volunteer my time to help nasty old crusty people in need without questioning worthiness. All people in crisis deserve help. But there are problems in the world, and those of us who shout "no freaking way" are those who see to it these problems are solved. Sometimes that involves delivering groceries to a shut in (regardless of personality). Other times this involves being loud, direct, and unwilling to back down. And there are moments in life when a dozen adults will stand in silence, all thinking the same thing: that person is being a real asshat, but I'm not saying a word. Secretly, many of them are praying somebody else in the vicinity will. Secretly, the meek are praying it will be over before anything upsetting happens.

Openly, boldly, perhaps aggressively, the rilers are rubbing chalk into their palms and adjusting their grip on the metaphorical Louisville Slugger of their wrath.

Screw the meek. Really, they get the earth at some point, so they can just shut up for now. Plus they never say crap anyway, so it's not a long walk. To hell with the wimps and their "can't we all just get along." No, dammit, we can't. Pay attention to history much? We can try hard, but we will fail. Ignoring problems is not "getting along," it's failing to participate. It actually increases the discomfort in the long run. Tell you what-- if it turns out someday we do all get along, I can absolutely promise you the President of Getalongia won't be meek. He or she won't be mild; he or she will be a riler. I know many meek individuals who will deliver the aforementioned groceries. I don't know any who organized the delivery squad, conned the local supermarkets into discounts, bullied the volunteers into volunteering, and made the phone calls to tell off meek volunteers who were late delivering Mrs. Cranky's Sudafed and chicken soup. That sort of position requires one of US: the few, the proud, the bloody-minded bastards. Yes, the rilers.

You know something? This job should come with a freaking cape and tights.

We come in good and bad flavors and seventy two convenient, portable sizes. Some are villains. Some are heroes. I like to think of myself as a good gal fighting for truth, justice, and extra mocha sprinkles for one and all. Sometimes I'm mean. But the target of my meanness really has it coming. And I'll tell you, as I was leaving that store, two or three people acknowledged my act of rilery with a "good for you," a thumbs up, and (in one instance) a quiet, clapping motion. The manager (with whom I have a very friendly relationship) caught my eye and mouthed "thank you." On the one hand, I was annoyed in a tiny way that he, in his position of authority, didn't speak up in my place. On the other hand I try not to expect non-rilers to be something they are not. I shrugged my acknowledgment at him and just left the store, but you know... he had a gleam in his eye.

I'm thinking about inviting him to a meeting and trying to convert him. We can always use another big mouth, and he seems to have potential. I might even spring for the cape and tights.

Going AWOL

Please keep my beloved Aji in your prayers. Wednesday morning he went into the laundry home of the brownstone in Cambridge to fix his favorite shirt. In removing the iron from its spot in the cabinet he discovered rather suddenly that some relatives who had stayed in the basement apartment made changes without letting us know. The entire cabinet came over onto him, pinning him to the floor. He has a hairline fracture in his skull, had 43 stitches on his temple, scalp, and cheek, and damaged his eye, jaw, shoulder and arm. Prognosis is good but it will be a long mending process, and he had some bleeding on his brain.

I will be very scarce until my baby is back to his wonderful, cranky self.