The Scooter Girls Live in Columbia!

The Scooter Girls just finished a one week engagement in Columbia, Maryland where they were – as always – a huge success! Their engagement began Sunday December 23, 2007. Everything was set. There were sprinkles, Cheetos, root beer floats, cookies to decorate, exotic juices, fancy glass, china and silver, cheese crackers, marshmallows, presents, books, and of course, Olivia’s special sleeping nest with an abundance of pillows.

The weather was fine, although not very “Christmas-like,” It was warm and sunny, which was actually a great boon. Because the Scooter Girls had just been gifted with new scooters from Santa! Days were spend flowing up and down the curvy, winding road in front of Gramma’s house. Skills of great balance, speed, and grace were demonstrated to the wonderment of the neighors. The Scootter Girls devised cunning routines as artistic as water ballet, as intricate as an Olympic gymnastic offering, as swift as the Indy 500, as perfectly balanced and breathless as a slalom race!

And through it all the two beautiful Scooter Girls smiled, sang, giggled, yelled “Watch ME!” and scootered with great abandon and joy. And – believe it or not – the injuries were kept to a minimum! Unbelievable given the complexity and speed, and the tremendous risk involved in their many routines. Two scraped knees, a skinned palm, an elbow scraped; that was the extent of it. Those Scooter Girls certainly do live up to their reputation.

Another Year...

goes by. From 2007 to 2008. When did using two-thousand become so prosaic and using nineteen hundred, historic!

4. Baby Boy Fletcher Goes Home –OR – The Great Escape

THE ALL NEW MOSTLY TRUE ADVENTURES OF BABY BOY FLETCHER

Time passed. Slowly. Interminably. Lives were focused on the NICU, coming and going at all hours to be with Baby Boy Fletcher. Waiting. The medical staff was cautious. The parents were worried and tired. The world was waiting. And yet another day went by. Slowly. Interminably.

Suffice it to say, the BBF was getting restless. He had learned in a very short time that boredom quickly encroached when one is contained in a plastic bin, hooked up to machines and lights, being constantly prodded and observed, yet not allowed to observe or prod back. It had been eight long nights, a duration beyond expectation or bearing. Oh my. What to do!

It was time to make a run for it. He needed a plan. Fortunately, he had had more than sufficient time lying in his plastic cage to formulate many plans, evaluate the relative merit and likelihood of success of each. He also, since time was not in short supply, did a risk assessment and s cost-benefit analysis, just because he could. Finally he settled on the one plan he felt was most likely to succeed. He made himself “well enough” to be discharged from the hospital. Simple, elegant, brilliant! He ate, pooped, breathed, passed all of his blood tests with top grades, and ate and pooped some more to reinforce the obvious conclusion that he was ready to go home.

At last, the medical authorities agreed. They said he could go home! The parents were jubilant. Tired, but jubilant. But of course, the medical bureaucracy had to first be tackled and it gave a gallant fight before it allowed Kate and Ed to walk out the front doors of the University of Maryland Medical Center with the Baby Boy Fletcher. It was ten o’clock on a hot humid September night in Baltimore when the BBF took his first breath of fresh air. Well, it was Baltimore, where “fresh” air was in short supply. It was actually drippingly damp and dank in texture; saturated with unhealthy levels of ozone and particulate matter; reeking of the exhaust of too many cars, buses, SUVs; and redolent of the rancid odor from decaying Burger King and McDonalds less-than-happy meals scattered about the sidewalks and curbs. But, it was not hospital air. Ode to joy!

Aided and abetted by the Goddess of the Universe and her consort, Ed surreptitiously went to retrieve his car. He was careful to not attract attention as the paparazzi were ever ready to pounce on BIG NEWS and the emergence of the BBF into the Baltimore commons was Big News. Meanwhile, Kate, the Goddess, and her consort took up position in the midst of the ongoing mass of humanity entering and exiting the hospital – a perfect spot to be anonymous. The consort kept lookout and he seamlessly conveyed Kate and the BBF to the car once spotted. And they were off! Mission Accomplished!

Monet Refuses the Operation

Monet Refuses the Operation
Lisel Mueller

Doctor, you say there are no halos
Around the streetlights in Paris
And what I see is an aberration
Caused by old age, an affliction/
I tell you it has taken me all my life
To arrive at the vision of gas lamps as angels,
To soften and blur and finally banish
The edges your regret I don’t see.
To learn that the line I called the horizon
Does not exist and the sky and water,
So long apart, are the same state of being.
Fifty-four years before I could see
Rouen cathedra is build
Of parallel shafts of sun,
And now you want to restore
My youthful errors: fixed
Notions of top and bottom,
The illusion of three-dimensional space,
Wisteria separate
From the bridge it covers.
What can I say to convince you
The Houses of Parliament dissolve
Night after night to become
The fluid dream of the Thames?
I will not return to a universe
Of objects that don’t know each other,
As if islands were not the lost children
Of one great continent. The world
Is flex, and light becomes what it touches,
Becomes water, lilies on water,
Above and below water,
Become lilac and mauve and yellow
And white and cerulean lamps,
Small fists passing sunlight
So quickly to one another
That it would take long, streaming hair
Inside my brush to catch it.
To paint the speed of light!
Our weighted shape, these verticals,
Burn to mix with air
And change our bones, skin, clothes
To gases. Doctor,
If only you could see
How heaven pulls earth into its arms
And how infinitely the heart expands
To claim the world, blue vapor without end.

3. Baby Boy Fletcher Meets the Goddess of the Universe

THE ALL NEW MOSTLY TRUE ADVENTURES OF BABY BOY FLETCHER

On his first day, here on earth, the Goddess of the Universe (hereafter referred to as the goddess) made a visit to the hospital to meet the Baby Boy Fletcher. Her visit was unannounced so as to cause as little of a stir as possible to the hospital staff and patients. She was expert at avoiding the ever watchful paparazzi so it was not difficult for the goddess to make her way to the BBF’s room without discovery.

You may wonder why the goddess took an interest in the newborn child, floating in his netherworld of tubes, lights, and sterility. Well, I suppose it would be only fair to disclose that the goddess is the mother of Wonder Woman, making the BBF her grandson. As a matter of fact, her FIRST grandson. She was eager to see this marvel – a boy grandchild. To explore the mysteries of a boy grandchild. To determine his standing in her heart and her world, although this really was of no doubt given her experience with grandchildren and their ability to immediately stake out their forever place in her heart. And to assess the quality of his care, knowing how all too human we are, and mistakes are inevitable regardless of the professionalism of the attending staff. But mistakes were not an option when it came to the care of BBF and the goddess would assure his protection and care with her laying of the hands.

Even though, as a goddess, she carried no harm, she followed the rules of the Neonatal Intensive Care Unit and scrubbed and gowned before entering the realm of the BBF. She immediately went to her boy’s incubator, with no doubt in her mind that this was the one. All other objects in the room took on a blurry opacity except for that of the BBF. And he was shining and clear and wonderful! Goddesses cry, as demonstrated by the Goddess of the Universe as she stood at the side of her new grandson, filled with an unimaginable joy and peace. It was clear that the new grandchild’s boyness had no effect on his ability to leap into her heart and claim his spot for all eternity. She placed her hands on his back, feeling the life flowing through his tiny being. It felt strong, and good.

The Goddess of the Universe and the Baby Boy Fletcher had bonded.

When Words Don't Work

I love words, especially those that sound like what they mean or make me hear their meaning. Susurration, tintinnabulation, glaucous, gloaming, juggernaut, malevolent, chimera, choleric, numinous, vicissitude.
But sometimes, the meaning of a word seems to me to be just plain contrary to how it sounds. Which frustrates me to no end. These words that don't work for me become words that I can't seem to define, no matter how often I hear or read them.

Hypocorism - A name of endearment; a pet name.

Quotidian - Occurring everyday; common or ordinary.

Oneiric - Of or relating to dreams.

Consistory - A church council; a solemn assembly.

Obnubiate - To be cloudy.

Manque - frustrated in the fulfillment of one's talents.

Obloquy - A strongly condemnatory utterance.

These are just a few examples for my when words don't work category. And of course, the reason these and other words do not work for me is entirely subjective. But look at these words above - now really!

Does the word HYPOCORISM in any way at all suggest that it means a "pet name?" Come onnnnn......

"Megan was generally called "booper;" it was a hypocorism used by the family."

Or ONEIRIC! For goodness sake! Dreams - Oneiric; Dreams - Oneiric; Dreams - Oneiric.
Where is the connection?!

"Michael did not get much work done today due to his oneiric state."

Manquy! (an adjective pronounced ma-'kay)When you do not get the job of your dreams do you feel a bit "manquy-ey"? NO, dejected, angry, frustrated, but MANQUY! NO WAY!

2. The Provenance of Baby Boy Fletcher

THE ALL NEW MOSTLY TRUE ADVENTURES OF BABY BOY FLETCHER

Of course, Baby Boy Fletcher did not spring fully formed and appear one day in the NICU at the University of Maryland Medical Center! Nor was he brought to earth by a stork; not found under a berry bush; never left in a box at someone’s front door; not even discovered in a basket floating in the reeds of an ancient river.

Baby Boy Fletcher is actually the progeny of two extraordinary individuals. His mother, Kate Welsh, nee Fletcher, is famous for her legendary acts of bravery and courage, although not as Kate Welsh. It is little known that she is actually Wonder Woman! Yes indeed – Wonder Woman; that timeless and eternal Amazon most often described as "beautiful as Aphrodite, wise as Athena, swifter than Hermes, and stronger than Hercules." All this, and special powers! Most of us are aware of her heroic exploits down through the centuries. But Wonder Woman is a woman of action and not words so many of her most daring and important ventures are not generally known. She was advisor to the French Resistance during WW2, leading them on to many successful missions against the Nazis. She was there when Genghis Khan tried to take over the world, stopping his maleficence in its tracks. She took down Al Capone while letting Elliot Ness take all the credit. While the photo we use of her here is from her younger days (to protect her privacy) it clearly shows that famous, characteristic Wonder Woman image of confronting the world.


Baby Boy Fletcher’s father, Ed Welsh, disguised as a youthful accountant in this photo to protect his privacy, is in real life the immortal eEejai – The Dragon King! We are all familiar with The Dragon King’s fight for truth and justice; his successful battle to save the dragons from becoming extinct by being insidiously and illegally exploited in gaming dragon fights; his more recent work with reducing the carbon footprint that is desecrating our planet; and of course, his peculiar ability to extinguish fires by exhaling tons of water from his massive lungs! He has saved millions of lives, forests, prairies, homes, and landmarks since the time of the Last Days of Pompeii!. And then there are his super powers which are the stuff of legend. eEejai has the ability to become invisible at will; his wizardry at seeing into the minds of the “bad guys” enables him to stop their evil machinations before they get started; his shape shifting talents which let him blend into any crowd, confront any foe in whatever guise he deems fit; and his virtuoso mastery of the bagpipes.

Baby Boy Fletcher’s parentage is impressive indeed. The coming together of these two legendary heroes bodes exciting adventure for the Baby Boy. It is almost beyond imagining what his future holds. But of course, we can always imagine. (11/28/07)

KINDLE Also Means to Start a Fire

Amazon has launched what they hope will be the electronic replacement for the book in the form as we now know it. It is called KINDLE which is to call to mind the crackling of the fires of innovation; or could it be the crackling of the paper of burning books. As Amazon founder Jeff Bezos related to Newsweek reporter Steven Levy, "Books are the last bastion of analog."

I am not quite sure why books are seen, metaphorically, as analog's final defensive posture. I have never thought about books as continuous, time-steady signals, generally of the electronic variety. So maybe I need to tilt his comment a bit sideways. Does Bezos mean that the last bastion that analog must conquer is that of the book? By creating a revolutionary new way of experiencing books - digital in nature - will we thus conquer the paper versions of reading technology that have worked so well for more than 550 years? Conquer, bastions, revolutions - it is getting a bit militaristic all of a sudden. Books as a battlefield in the Art of War?

I am certainly NOT a Luddite, but maybe a curmudgeon, certainly a librarian, a volitional reader, and most definitely a bibliophile, bookworm, and collector of books. I love the feel of a book in my hands. The weight and heft of it. The paper. The font type and size. Margins. Inlays. Book covers. Frontispieces. Gilded fore-edges. The information on the book jacket flaps. All of the components, tangible and "un" that make each book unique.

Can Kindle give me this experience? Doubtful. Bezos' Weltanschauung of a book appears to be quite different from mine. And most likely from that of others as well. His attributes of a book - which must be an integral part of the Kindle - include projecting an "aura of bookishness" which by itself has all or no meaning. So to create this "aura", Kindle is the size of a paperback and extremely light. It also emulates a book with its tapering width. From a side view, Kindle has the same width as an ordinary pencil, not a "bookishness" characteristic where I am concerned. I personally enjoy a hefty book and the size and width of hardcovers are often a part of their appeal to me.

It uses a long life battery so that reading a book does not resemble the long past nascent experience of going to the movies and being confronted with "cliffhangers."
And if you go to the Amazon page and read all the features of Kindle, well, it is pretty impressive and certainly goes far beyond the scope of a book as we know it today. Its wireless connectivity enables it to function as an Internet device opening highways, roads, and bridges of literary opportunities. I cannot fault it for a lack of innovation.

But I am more concerned with how such devices will alter the creation of a story, a textbook, biography, poetry, newspapers. How will authors and readers alike be influenced by Bezos' vision of a new way of reading, writing, and publishing. In a world of infinite connectivity we can write along with an author - but do I want to? Authors can adjust text based on real time reviews of work-in-progress. Writing by poll. Hmmmm....

As much as the Internet has created a platform for all to pontificate, muse, yes, blog, debate, and so on, are we all Richard Russo quality writers? Writing along with David Sedaris as he works on his latest book of wit and satire leads to the creation of something other than that unique quality of "Sedaris-ness." Much will be lost. Being able to add an epilogue to Bob Woodward's latest book on the administration leads to never-ending books which may stray far and wide from the original topic and point of view. I cannot imagine the hubris of believing I can add anything of creative merit to Alice Munro's stories and would be bereft if indeed, her future works were edited or supplemented by we-the-reader.

So, I'll hold on to my home library for now as I investigate the potentials and uses of devices such as Kindle. Books will not go away anytime in the near future, nor will libraries or bookstores. And more will be revealed!

Joe Lewis & Me Go To The Gym

If I must resort to getting a trainer and working out - and I must - than I plan to do it in good company. Joe Lewis, Heavyweight boxing champion of the world! He held this title from June 22, 1937 until June 25, 1948 and made a division-record 25 successful title defenses. Someone I would be proud to emulate!

I am still on steroids and still struggle to breathe. And the weight gain from the steroids has just created more problems with my ability to be active. I get so exhausted just doing daily activities and my endurance is pretty non-existent. So what next? Sit in my chair and get fatter and fatter?

Nope! I have joined a gym - what has been relabeled in today's parlance as a fitness center - and acquired a trainer. If I want to get into any semblance of good shape, I need to train! So train I will. Two days a week with a trainer and then all the cardio, weights, balance, flexibility I want to take on.

My first appointment with Molly - such as sweet sweet name for this woman of steel. Former Air Force; and to my way of thinking there is never anything "former" about military! So Molly and I walk to a treadmill. Treadmill:

An exercise device consisting of an endless belt on which a person can walk or jog without changing place;
A mill that is powered by men or animals walking on a circular belt or climbing steps
A job involving drudgery and confinement.

Here's a definition I can relate to:

Instrument of discipline in prisons. A cylinder made to revolve by the action of prisoners putting their weight on boards fixed as steps on the surface of the cylinder. It was intended to be an irksome and monotonous punishment.

Some good words here: endless, drudgery, punishment, monotonous...
So back to me and Molly at the treadmill. I have not exercised in years - I have sarcoidosis - I am 59 years old - I am grossly overweight. So Molly says to me, "Let's do 55 minutes on the treadmill today."

I looked at her as if she were recently released from a long-term treatment center for the severely mentally impaired. FIFTY-FIVE minutes! ME! On a treadmill! I wanted to cry, but that would not have been very sporting of me. I WAS however mentally contemplating how to get out of my contract with the fitness center. There must be some other way to get my lungs back in shape!

So she starts up the treadmill and my feet begin to move. By minute ten my legs were burning and I was ready to leave, that is, if I could have had the stamina to walk out of the gym and to my car.

Twenty minutes - not even halfway through. I knew something that Molly did not - there was NO WAY I could do 55 minutes on a treadmill. Inclines, speed up, slow down, more inclines, and 40 minutes had passed. I was still upright. I could hear Joe Lewis urging me on, and on. Suddenly, time was up! I had gone 55 minutes on a treadmill.

I casually walked down to my car, got inside and shouted with joy! ME - 55 minutes! I was exuberant, ebullient, ecstatic, euphoric, rapturous! Me and Joe go to the gym again on Sunday.

1. ROCKET MAN

THE ALL NEW MOSTLY TRUE ADVENTURES
OF BABY BOY FLETCHER


As is well know by now, Baby Boy Fletcher (BBF) made his arrival six weeks early, eager to begin his adventures here on earth. On the fifth of September he came to Baltimore to take up residence and begin his all new adventures. While he weighed a good weight – 5 pounds and some odd ounces – he was not quite ready for the blue skies and open roads of life. So he spent some time awaiting his “all systems go” before he could venture out into the world.

He was hooked up to snaky opaque tubing, and bound with wires of rainbow colors and undetermined purposes. Bright lights were aimed at various parts of his fragileness and new and unexplained sounds abounded; susurrations, clangs, dings, beeps, swooshes, jabber, all filtered through lights and tubes and hard plastic shell of his new home.
This was not how most babies were greeted by the world. One could say it was unworldly in its lack of congruence, certainty, or general sense of celebration one would have expected. BBF began to take on the “otherness” of where he was placed becoming more like a being from a place far away in time and space than a newly born baby boy. In fact, his resemblance to a Bradburian rocket man, was noted by many who came to stare at him and marvel.

Thus began his first week on planet Earth.

When Cecelia Calls

Cecelia has reached an age where she calls me on the phone now. I pick up the phone and there is this delightfully clear, confident, and perky “Hello.” Immediately recognizable as Cecelia. And then we have a conversation; a true exchange of “sentiments, observations, opinions, ideas” and the events in our daily lives. We discuss books – she is always reading one or another of the “Little House” books. Or we discuss her social life – who is having a party, what movie she is going to go see, raking leaves with her father, updates on her best friends – she is quite a busy little character.

And at some point, we always talk about when we will next see each other, bemoaning once again the fact that it is always far too long a time between our visits. Grandchildren should live right next door, it is a simple as that! She is a part of my heart and soul and I think of her every day. So she might as well move in next door since she is such a constant in my life. Would that life could be all the perfections we wish and hope for!

I love it when she calls me. And I am daunted by the fact that she can accomplish this feat. And constantly amazed that she is of an age where she can perform such tasks. And a bit nostalgic for the little girl who was.

Yet when I hear her “Hello” on my phone, my day instantly is sunny and cheerful.

When Cecelia calls me, there is no place on earth I would rather be than on the phone talking with her.

Trick or Treat

Halloween! Such excitement over this pagan ritual turned into rampant egregious consumerism. According to the 11/05/07 issue of Newsweek, we Americans will spend almost $2 BILLION on Halloween this year!
Are we wacked or what?! Where are our priorities? How about sending all that candy and costume money to New Orleans instead? Unbelievable.

Now for the dilemma...

I hear the sounds of the trick-or-treaters approaching as I have my overstocked candy bowl ready to greet them. And the picture here is of my beautiful wonderful grandson dressed as a pumpkin for - what else Halloween! So where can I draw the line here!
I get a lot of pleasure from seeing the neighborhood children in their costumes, excitedly going door to door in pursuit of that great sugar coma! And I adore going out with my grand daughters; I love to see them dressed up and playing pretend as they too collect more candy than any sane dentist would recommend.


But does it have to cost TWO BILLION DOLLARS?



I remember how much I enjoyed and looked forward to Halloween when I was a child. But things in the 1950s were a bit more parsimonious when it came to trick-or-treating. We had homemade costumes and used paper bags from the A&P grocery store. We also did not have to worry about home made treats - I loved Mrs. Candy's (Yes, her name really was Mrs. Candy) homemade popcorn balls and Mrs. Schaller's pumpkin cookies. We did not have to have our parents go through all of our goodies looking for needles, pills, razor blades, the modern-day "tricks" of the holiday. At the age of 5 years old, I could go out with my 5 year old friends without our parents tagging along because our neighborhood was "safe" for children. There were plenty of parents standing at their doors watching us go from house-to-house; we knew them and they knew us.

But did it cost the equivalent of today's TWO BILLION DOLLARS! Should it?

Baby Nights and Biases

Little baby Fletcher spent the night last night. He is almost 2 months old and growing fast! That's a good thing! I was reminded, however, of nights with his mother 34 years ago; colic.
If you have had a colicky baby, I need not say more. If not - well, sleep becomes a memory; it is fleeting, ephemeral. You fall into the Wishful Thinking bias hourly. You know, "maybe if I hold her like this on my stomach " or "maybe if I give her a bottle at room temperature instead of warm," or "maybe if I could just be 18 again" ..... Then you pass on into let's try this again, and again, and again phase and guess what! Nothing changes!
Then the escalation of commitment bias rears its ugly head! Since it has already been 3 weeks of trying to get the baby to sleep for at least 2 straight hours without screaming in pain from the colic, you cannot stop trying to stop it. You have already invested 3 weeks of your sleep deprived time so you have to just try harder! So you look for any remotely feasible suggestions on how to make the colic go away so that you can sleep. You introduce pacifiers into the crying mouth, you try swaddling, gripe water; you rub olive oil on her stomach in a clockwise motion, eye of newt, toe of frog...you find yourself willing to spend hundreds of dollars on "products" guaranteed to soothe your baby properly because obviously you have demonstrated your utter failure to know how to do so yourself!

So now you slide into depression, despair, low self esteem, insomnia-induce temporary psychosis, stop bathing, eating, talking, what a mess! Also this because something that weighs eight pounds can't seem to stop crying, no matter what you do! Well, yes, I remember it well.

But now I am the gramma and NOT the mom. So Baby Fletcher and I managed rather successfully to make it through those night time hours. He fussed and I adored him. He grunted and groaned and I adored him. He even cried, and I adored him. Sometimes he even managed to sleep a little, me sitting in a chair and holding him close and adoring him. What a change in perspective 34 years can bring about!

Saying "NO"

Anne Lamott, in her book Plan B: Further Thoughts on Faith, said:
"I live by the truth that NO is a complete sentence. I rest as a spiritual act."

What an amazing concept! When I first read that, I was stunned. How difficult it has always been for me to say NO to any request for my time, money, support, service. And I generally just say YES immediately without even taking a breath and some time to consider WHAT is being asked of me. And then I am stuck!! I am left with hitting myself on the head as I sit and stew and fret and regret whatever it was I just said I would do. I look at my calendar, sigh, moan, shake, and hit myself on the head again as I see myself filling in all of the days with activities that not only do I not have time for, but that I don't even want to do in the first place!

So Anne Lamott really "spoke" to me with her words. Since I read them, back in 2005, I have actually put the word NO into my vocabulary.

errrr no
nnnoo
um no?
no
no
NO
NO (period)!

Olivia is 7!

My granddaughter Olivia turned seven this weekend. Such an advanced and important age for a little person. We went to Syracuse to celebrate with her, as we do every year. Everything these grandchildren of mine do is momentous to me as well it should be.

I never expected to come to such unconditional love in my life as I have experienced with my grand children. And I have delighted in every moment of it. It is fleeting, evanescent.

I can sit and watch their faces for hours and find that a more than sufficient way to spend my time. Listening to them talk, play, think out loud is the most important learning experience in my life these days. The world view of children is so fresh and clear - clean, open, naive and elegant.

Olivia has eyes that sparkle like the splashes of light on the ocean's waves. They are deep and endless. Inquisitive. Playful. Her world has so many possibilities, so many interpretations. Convention has not yet set in and turned fairy dust into concrete. I hope it never does.

Always Beginning

You are so young, so before all beginning, and I want to beg you, as much as I can, to e patient toward all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.

Rainer Maria Rilke

Age Blips

I picked up Richard Russo's new book last week and began reading it. It begins:
"First, the facts. My name is Louis Charles Lynch. I am sixty years old, and for forty of those years I've been a devoted if not terribly exciting husband to the same lovely woman..."

Well, I thought, Russo's books are populated with wise, flawed, clueless, astute "old" people and here is another one! THEN, it came to me - the dreaded fact that I am 59 years old. Only ONE YEAR younger than Louis Charles Lynch!!! I could be one of Russo's "old people!"

My perspective on "age" is definitely skewed. I do not view myself as "old" or "elderly" or anything even close to my perception of old people from when I was a girl, or in my teens, twenties, thirties... Yet, here I am - soon to be 60, an age that I had perceived as ancient, over-the-hill, decrepit, senile. What am I to do?

Is 60 the new 40? or even the new 50? hmmmmmm

Glenview Road

I grew up in a smallish town in the 1950s and 60s - Glenview, Illinois. The midwest. Carl Sandburg land. Chicago. Lake Michigan. Four seasons. It was a great time to grow up in Glenview. And it was a great time to be a kid there.

I could ride my bike everywhere - the town was small enough so that distance was not an issue. Nor were there any highways, expressways, or other such things to worry about. We even had sidewalks to ride our bikes on (for the less daring, of course).

I walked to school giving me the opportunity to crunch the crispy ice that had formed overnight on the puddles. To stomp and kick through huge stacks of autumn leaves piled up waiting to be burned over the weekend. To pick lilacs from the wildly abundant stands of lilac bushes to bring to school for the May altars. We did not have or need school buses, let alone door to door school bus service that we see today! A mile was seen as a very very little bit of walking to have to do.

I could play outside at night - even after dark! We did not think about danger or crime - if we wanted to scare ourselves, we would tell each other ghost stories in the shadows of the huge elm trees. It was safe to walk in our neighborhoods at night, to play softball in the middle of the street, to run through the backyards playing tag. We would iceskate at Roosevelt Park at night under the stars and then walk home with our skates over our shoulders and our breath frosting the air.

After school we would "hang out" at the drugstore. How utterly daring! Our drugstore had a real soda fountain and it was a daily ritual to sit at the counter and have french fries and a green river, or vanilla coke. And then we would walk over to Rugan's general store for penny candy - really - only a penny!

I look back on Glenview today and wonder if it still exists anywhere in this country. I see all of the sheltered and heavily guarded children in my community - well, I actually do not see them as they are not allowed outside to play. They make "play dates" with approved "friends." No spontaneous knocking on a friend's door to "come out and play" for them. No soda fountains but for the tarted up replicas in the shopping malls. No playing outside at night.

I sound like an old something-or-other I guess. But it was a good time to be a kid in the 1950s, in Glenview, Illinois.

Baby Quotes

Little baby Fletcher is just getting cuter and cuter, more alert, and bigger and bigger each day. He has gain more than 2 pounds in the last few weeks and he is not yet even one month old (or young?)! I just love sitting and holding him. It is so peaceful and makes me feel so centered.

Babies are a good and wonderful thing after all. They are a blessing and a hope for the future. Here are some quotes that echo my thoughts about babies.

One of my favorites is from the great poet of the prairies, Carl Sandburg: “A baby is God's opinion that life should go on.”

Don Herold, a humorist from the 20th Century said: “Babies are such a nice way to start people”

And that wonderful, sometimes curmudgeon Mark Twain adds: “A baby is an inestimable blessing and bother.”

James Matthew Barrie, that eternal boy playright, said: "When the first baby laughed for the first time, the laugh broke into a thousand pieces and they all went skipping about, and that was the beginning of fairies. And now when every new baby is born its first laugh becomes a fairy. So there ought to be"

Van Gogh was also a wonderful painter with words. "If one feels the need of something grand, something infinite, something that makes one feel aware of God, one need not go far to find it. I think that I see something deeper, more infinite, more eternal than the ocean in the expression of the eyes of a little baby when it wakes in the morning and coos or laughs because it sees the sun shining on its cradle."

And I will close with words of wisdom from one of my all time favorite writers, Anne Lamott:
"Honey, you'll never draw another calm breath as long as you live. That blissful amniotic unconcerned state of people without children is a thing of the past."

What the heck does that mean?

I have been long fascinated by word phrases that we use in our everyday conversation, that, when taken literally, make no sense. Why did someone call an exam a "turkey shoot?" Or why am I "barking up the wrong tree" when I am looking for my skinflint aunt to send me money on my birthday? Why am I looking for a "square meal?" Won't a round one do? I love these things!

One such phrase that has puzzled me for a long time is "dead as a doornail." A doornail was never alive, so can it be dead? And why a door nail? Is this a good thing? hmmmm

Well I found a site that has some of the answers to the origin of phrases and here is what "dead as a doornail" implies:

"Meaning: To be dead, with no chance for recovery.
Example: You might as well junk that car, the engine is dead as a door nail.
Origin: Nails were once hand tooled and costly. When an aging cabin or barn was torn down the valuable nails would be salvaged so he could reuse them in later construction.

When building a door however, carpenters often drove the nail through then bent it over the other end so it couldn't work its way out during the repeated opening and closing of the door. When it came time to salvage the building, these door nails were considered useless, or "dead" because of the bend."

I found this information at Origins of Phrases.

A Daily Reprieve

I was at an AA meeting last night and the message was powerful - relapse happens! And there is no guarantee against it and no promise that we will make it back into the rooms. I find meetings where the theme is chronic relapse vital to my sobriety. I need to hear that my sober time does not guarantee me any free passes. That I have a daily reprieve and that if I do not do what I have done so far to stay sober, I have no defense against the first drink.

I sure do not want to go back there! What a hopeless, deep, empty place that was. From page 24 in the Big Book:

At a certain point in the drinking of every alcoholic he passes into a state where the most powerful desire to stop drinking is of absolutely no avail. The tragic situation has already arrived in practically every case long before it is expected.

The fact is that most alcoholics, for reasons yet obscure, have lost the power of choice in drink. Our so-called will power becomes practically non existent. We are unable, at certain times, to bring into our consciousness with sufficient force the the memory of the suffering and humiliation of even a week or a month ago. We are without defense against the first drink.

...When this sort of thinking is fully established in an individual with alcoholic tendencies, he has probably placed himself beyond human aid, and unless locked up, may die or go permanently insane.

This is not even an option!

Baby Fletcher is Home!

He came home Thursday evening, September 13, after 8 days in NICU - and ALL is right with the World!

Close your eyes
Have no fear
The monster's gone
He's on the run and your daddy's here

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we'll both just have to be patient
'Cause it's a long way to go
A hard row to hoe
Yes it's a long way to go
But in the meantime

Before you cross the street
Take my hand
Life is what happens to you
While you're busy making other plans

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Beautiful, beautiful, beautiful
Beautiful boy
Darling, darling, darling
Darling
John Lennon

Babies are god

Baby Fletcher came home last Thursday evening and all is right with the world.

Lester and I spent Saturday at Kate & Ed's house and all I did from 10am until 10pm was hold the baby! What a refreshing, delightful, and serene way to spend the day.

Operationally speaking, he really doesn't do much right now - every 3 hours or so he wakes up, hiccups, gets his diaper changed and eats. Then he goes back to sleep. But he is endlessly fascinating to me! The face itself is a miracle; the squints, squinches, wrinkles, the lip puckers, the tongue twisting, yawns, frowns, I could go on and on at how remarkable a thing is a baby's face. And the random limb movements also offer hours of deep pleasure! The arm in the air, the toes spread out, the hand curled, knuckles to the nose, kicks, knee jerks, again, endless surprises in each unanticipated and unplanned motion he makes.

And it is only the beginning! I am blessed to have yet another grand child to take me on this remarkable journey and I treasure every minute of it. I let my eyes soak in his beautiful face, the perfect skin, this flawless and untouched person. And it fills my soul.

Life and Lungs

Forget the Limbs - just tell me what is going on with my lungs!!!

What is the diagnosis? What is the treatment? The prognosis?

I saw my pulmonologist yesterday and he too wants more tests. I get the sense that he does not agree with the Hopkins sarcoid specialist. I feel sometimes as if my life were "on hold" while I wait on medical wisdoms, while my guitar gently weeps...

This disease is not the end of the world and I know that. In the grand scheme of things, it is just not that important. But, it is my disease and I am tired of wondering what it is! An answer would be nice. Adequate treatment would even be better!

Waiting and Worrying

Baby Fletcher is still in the NICU. Back and forth his parents go, trying to be with him as much as possible. I have such admiration for them. But it pains me to see what they are going through. The baby was supposed to come home today - with great joy and relief. But when they went to pick him up, they were told that he was not eating enough and they had to keep him at the NICU until his eating was back to where it is supposed to be. I cannot imagine the letdown they must have felt. I broke into tears when Kate told me on the phone. Great disappointment quickly followed by worry and fears for the baby. We have never had to leave a baby in a hospital and maybe this is just "little stuff" and not really a big deal, but to me, it is the world right now. And I won't feel right until he is at home with his mom and dad.

Babies Make the World Go Round

Fletcher Ethan Welsh is the newest addition to our family and and he has already make his own special space in my heart. There is nothing like a brand new life to show me what is right with the world. He came into our lives 6 weeks early, Wednesday September 5, 2007, 4:42 am, weighing 5 lbs 12 oz, 18" long. Such a tiny thing. And a living breathing tiny thing at that!

I looked on his precious face and tears just rolled down my face - joyful and grateful for being given this amazing gift. I remember when my first grand child was born as I was flying out to be with my daughter and her family I was wondering how long it would take for me to "love" her - obviously a not-very-experienced grand parent:-) As soon as she was put in my arms I felt my heart expand as it made room for her to take up permanent residence. The same heart that now holds Olivia, and since Wednesday, Fletcher.

Life Does Go On

It is 9:30 in the morning here in Columbia Maryland, and about 30 minutes ago, my son-in-law, Ed, called to say that he and Kate were on their way to the hospital. Kate's water broke and it looks very likely we will have our new baby boy today. I feel as if I am in a state of calm panic!

She is about a month early. She is my beloved daughter. This is her first baby. And all I can pray is that she is well cared for and not in danger. My biggest fears always - ever since they were born, my daughters. That they are never harmed, in pain, suffering, alone; that they die while I am still forced to live. And that fear never goes away. So I sit and pray.

And I am also very excited - a new - brand new - baby boy to love. Baby toes, chubby thighs, a neck filled with those hidden creases that smell so good, baby skin like silk, limbs jerking every which way with no rhyme or reason other than that they can. I already love this baby and I have not yet even held him - he has not yet made his debut! But I love him with all my heart.

And now, the waiting. The temptation to pick up the phone and call every 5 minutes!. And every time my phone rings, my heart leaps with anticipation. Of course, it has only been 45 minutes since Ed called so I probably should try to settle down, but I probably will not. This is an event; a moment in life that requires special attention and care. Events do not suffer waiting very well!
More will be revealed!

Bird Poop?

So, I "might" have hypersensitivity pneumonitis.....and it "might" be caused by exposure to bird poop! How prosaic!!!!!

Now I do not mean to sound ungrateful here - but bird poop? Of course, that will have to be tested and confirmed along with a host of other common causes of HP. And if a cause cannot be found - too bad for me. I will just have to cross my fingers and hope that I don't encounter the allergen again. So maybe it is time to start looking into cloisters!

When is Sarcoid NOT Sarcoid?

When you go to the Hopkins Sarcoid Clinic and the Sarcoid specialist says so! This ambiguity about what disease I do or do not have is such a farrago! I have gone from being dead in 3 years, to not sure if I am chronic or acute, to a choice between two diagnoses, treatment, oops, wrong diagnosis, and now, more tests to try to confirm the new diagnosis and rule out the old one.

A disquisition on lung disease has been occurring for the past six months and the more information I receive has not settled the ground beneath my feet. Murky, muddy, sloppy, hidden depths, rocky. I am getting more and more confused.

Plans have been made, treatment begun, work rearranged, life rethought, and today, I have hit the brick wall. Although it is not a brick wall; more like a wall of jello. It wiggles, it shakes, it is permeable, sort of, and just when I think I have a hold on it, the wall quakes and I am holding air.

So, today I am not going to give too much thought to hypersensitivity pneumonitis. That may or may not be the new diagnosis. It will take some moderate amount of time to confirm or rule out, so, more will be revealed.

Boring and a Lot of Time

Having this lung disease is very paradoxical. I find that it takes up a considerable amount of my time, and, that when it is not making me do this, that, go here, there, sit, wait, and other manifestations of my now daily activity list, it is boring and it is so confining.

Hmmmmmmmm

Yesterday. I was running a fever yesterday so I was sent home from rehab to do nothing.
Tomorrow. I start at the Sarc Clinic at Hopkins at 9:30am and expect to be there all morning. Then it is off to rehab for 3 hours. All day taken up with this illness.
Last Friday. Stuck in the house going nowhere, especially out of doors. The heat index was 110 degrees and the air quality was orange. So unhealthy; house arrest, yet again.

Thinking about steroids, medication adjustments, exercise, staying inside, going outside, endless blood tests, CT scans, doctor appointments, chest x rays, more doctor appointments, heart rate, blood pressure, treadmills, diet, food labels, more doctor appointments, it is endless in cluttering up my life in a really meaningless, complex, boring manner.

It sure takes up a lot of time!

Fall Semester

University begins this week - and it is still summer. It is 90 degrees out today.
I always associated the start of school with Fall, not summer. I grew up in a suburb just northwest of Chicago. We started school the week after Labor Day. And we had real falls, not the sad sad excuse for fall that we get here in Baltimore. Even though I have lived in Baltimore for 14 years, my body is wired for school to start coincident with a real fall!

Back where I lived we had forests, filled with maples, oaks, elms, birch, aspen, a riotous palette for fall days. Neighborhoods were bedecked with old growth trees, creating living leafy arches rising over our streets - a dome of constant motion and change. In the fall,the leaves crunched underfoot. They smelled dusty and smoky, and orange. A sensual experience that surrounded everything for those brief weeks of change.

Now, I have to go search for some crispy colorful leaves - they do not abound. And I have to crunch them in my hands to release whatever bit of fragrance they might contain. Somehow, it is just such a pallid impersonation of such a spectacular season.

Or maybe I am just garnishing my memories with those "not like the good old days" sentiments. Who knows! But it sure is fun to reminisce.

Rehab on my mind

Today is my second session of pulmonary rehab. I have waited all summer for this program to have a spot for me and I finally began last Friday. I have great expectations for its curative potential. Right! How about I have some hope that it can help me with all of the weight I have been carrying around since I began using steroids. I have some hope it can help me breathe easier, breathe deeper, breathe.From what we did on Friday it does not seem very intense. So maybe I will have to motivate myself more to do more outside of rehab.

OK - motivate myself. I am fat, 58, have sarcoidosis, fatigued, fat, - yet , not motivated. I remember when I began running in my mid-30s and how it hurt. I ran around the block and thought I would die! But I kept at it - what motivated me back then? I kept at it and then I just ran, and ran, and ran until there was not much left of me. And then ran some more.

Today, I cannot even stick with taking a walk. Motivation - I had better go looking for it.

Bad Breathing Day

It is a USG day today - or ORANGE. Unhealthy for sensitive groups. I qualify - dammit! And HOT; heat index is predicted to be 110 degrees. So I am sitting inside, again...

How has my life changed these past months? Well, something very prosiac but habitual now, after I turn on my computer I check the weather and then, the air quality for the day. I never thought about air quality, except as an environmental issue, and even then, now a whole lot.
Air Quality. It can be Good. Moderate. Unhealth for sensitive groups. Unhealthy. Very unhealthy. Hazardous! Unbelievable. There is a category where the quality of air we breath can be hazardous! That gives me pause.

Life On Steroids

And I ain't no Barry Bonds! I am not buff, I am not the energizer bunny, I am not amazing the world with my record breaking performance! I am fatter, fatigued, and performing the best I can, which is not world class right now.

I hate being on steroids. I feel as if there are these little pacmen running through my body wreaking havoc with my system as they laugh! Ah, gotcha cerebral cortex! Ah hah - there goes the right kidney. Hmmmm, we need to try harder with the joints, they aren't hurting enough.
And so on, so forth! And in spite of massive steroid dosage, the sarcoid is getting worse again. So what do we do now? Increase the steroids!

The problem here is that there is no good, nor bad, nor any real evidence that steroids help treat sarcoid. I posted some research recently that indicated use of steroids to treat a sarcoid outbreak, while initially may be very helpful, actually leads to worse long term results. I have been thinking about that since I came across the research study. And I cannot turn back at this point since I have already skewed my long term results by using steroids.

My pulmonalogist leaves me with the impression that I will be on steroids for the rest of my life - which is not what I initially thought or understood. I thought they were used to treat an inflammation and then I would be taken off of them until needed again. Now, every time I ask him, WHEN, he responds with a shrug. How reassuring.

So Barry Bonds - you are such an idiot! Steroids are not worth it! What risk for such an ephemeral gain. So you will be in a Hall of Fame. So you beat out Hank Aaron (who will always be my hero); so what?

Grandchildren

Cecelia and Olivia are here visiting this week - heaven! And exhaustion! And joy! And singing, dancing, chatter chatter chatter.

I cannot imagine a life without grandchildren.
I remember when my daughter was pregnant with Cecelia I actually spent time wondering about how long it would take me to "love' the new baby. I was not sure that it would be something that just happened, or how it happened. Well, the moment I held that teeny little Cecelia in my arms I was in love! She was in my heart immediately and forever. The same thing when Olivia was born.

Love is so interesting - what is this immediate and without reservation love? Why? All I did was hold this seven pound person and there it was - love.

When I am feeling down or having a bad day or cannot fall asleep, I just picture my granddaughters and it is an instant fix. Soothing, joyful, reminding me to keep my gratitude in the forefront of my life.

Return of the Sarc

Back on a higher dose of prednisone. I am having more trouble breathing and with fatigue. OH FOR JOY...

I was just looking at an interesting study, with a reasonable sample size. If their conclusions have been substantiated by other similar studies, I am past the point of not return. It seems that the best results are with NEVER giving steroids to someone diagnosed with sarcoidosis!


The following was the published abstract from the journal CHEST (v. 111):

Over a 4-year calendar period, 337 patients with sarcoidosis were prospectively enrolled in a registry. One hundred eighteen patients were assigned to a spontaneous remission group when symptoms resolved without treatment, and 103 were assigned to an induced remission group when symptoms resolved following corticosteroid therapy and successful discontinuation. In 116 patients assigned to a recalcitrant group, therapy could not be stopped for 1 month or more owing to severity of symptoms or lack of compliance. We defined relapse as a recurrence of symptoms of sufficient
severity to warrant treatment with corticosteroids, following a remission without treatment lasting greater than 1 month.

Intervention: Patients who were judged to be sufficiently symptomatic to preclude observation without treatment or who failed to respond to conservative treatment with topical or inhaled corticosteroids or nonsteroidal anti-inflammatory agents were treated with systemic corticosteroids at a target dose of 20 mg prednisone per day for 1 year. (I am already out of the ballpark here as I was started at 50 mg a day)

Measurements and results: We observed a 74% relapse rate in the induced remission group, but only an 8% relapse rate in the spontaneous remission group (p<0.01).

Conclusions: Relapse occurred frequently in patients with sarcoidosis who had been treated with corticosteroids, and rarely occurred in patients who had not been treated with corticosteroids in the past. The striking difference in relapse rate between treated and untreated patients suggests that patients with disease that would later be severe and protracted were almost unerringly identified early in their course. One explanation is that severe presenting symptoms portend a protracted and recurrent course; an alternative explanation is that corticosteroids contributed to the prolongation of the disease by delaying resolution.

Hazy, Hot, Humid, and Harmful

That is the story for this week here in the D.C. metro area! I went outside today just to go outside and the air was so hot and wet it was as if I had stepped into a sauna. So, back inside. Not a good day for my lungs. Heat advisories and code oranges just about every day this past week. Last summer it would not have occurred to me to stay inside because of heat/humidity indices or air quality. I take so much for granted! Until it is lost, broken, or gone!

I saw the pulmonalogist again this week - he had my latest CT scans and pulmonary function test results, and as usual, no specific answers to any of my questions. "We don't know much about this disease," "We don't know when it is time to end steroid treatment," "we don't know if and when it will return," "it is a mystery," "sort of scarring," "less blur but maybe it will get more clear," "your diffusion level could improve, but..."

I have gained a LOT of weight on the prednisone. I also have the steroid face! Round, round, round. So now I am not only sick, I am sick and fat!

It is so frustrating! The one thing that keeps me sane is living each day, one at a time, and not looking ahead to a whole list of "maybe; don't know; possiblies."

Reading & Writing

But mostly reading. I was reading the Proliteracy President's State of Adult Literacy 2006 report, published by Proliteracy Worldwide, which begins with the sentence:

"The United States is not a literacy superpower."


In this document they note a report from 2003 stating that in the United States, there are 11 million individuals over the age of sixteen who are non-literate in English - 11% of the U.S. population. 29% of this population has "basic" literacy shills, i.e., they can read simple everyday documents, but without any significant comprehension. Reading similar information in chart, graph, or tabular form renders is incomprehensible to this group.
Disturbingly, the report noted that only 13%, or 28 million individuals, of the entire population could be said to be proficient in English! What does it mean to be proficient? "Proficient — these adults can read long sections of complex and abstract text and then integrate that information and make inferences from it."

When comparing the U.S. to other countries, we don't do very well! When looking at the countries that have the highest number of adults scoring at the lowest level (Level One)of literacy, the U.S. came in fifth; not anything to brag about!
Level One:

"Individuals scoring in Level 1 can do little
more than read a short text to find one piece of information, locate a piece
of information based on a literal match, and complete one-step math tasks
such as counting or sorting dates."

Level Three (out of five levels) is seen as the minimum needed to get by in today's information based society, and one's economic security is dependent on skills attained for this level of literacy.

Level Three:

"People in this range can integrate multiple pieces of information from one or more documents and demonstrate understanding of mathematical information represented in numbers, symbols, maps, graphs, and drawings."

We seem to have a serious policy disconnect here.

Air Quality and Places to live

From Money magazine:

Here are the cities with the Best Air Quality Index in 2006:


Rank City Air quality index (% days AQI ranked good)


1 Lake Havasu City, AZ 100.0%
2 Santa Fe, NM 100.0%
3 Richmond, VA 100.0%
4 Casper, WY 100.0%
5 Cheyenne, WY 100.0%
6 Napa, CA 99.7%
7 Carson, NV 99.7%
8 Idaho Falls, ID 99.4%
9 Salinas, CA 99.2%
10 Santa Cruz, CA 98.9%
11 Great Falls, MT 98.9%
12 Pueblo, CO 98.4%
13 Honolulu, HI 98.4%
14 Billings, MT 98.4%
15 Ames, IA 98.1%
16 Petaluma, CA 97.3%
17 Santa Rosa, CA 97.3%
18 Bellingham, WA 97.0%
19 Schenectady, NY 96.7%
20 Bismarck, ND 96.7%
21 Amarillo, TX 96.4%
22 Charleston, SC 96.3%
23 Kissimmee, FL 95.4%
24 Daly City, CA 95.3%
25 Redwood City, CA 95.3%


Unless you want to move to Schenectady, it looks like the western cities have the advantage over the rest of the U.S. That is depressing and daunting.

Bad Air Week

I am glad this week is ending - it has not been an easy one for my lungs. Yesterday I got very winded and was exhausted all day. I went to bed early which I never do. Today I woke up with a tight feeling wrapped around my chest - like a metal band that was 2" too short.
The air quality here has been orange a lot and I try to stay indoors but that feels claustrophobic after a while. And it makes it difficult to garden which is one of the best parts of my day. Hot, high particles, humid, hot. Living in Baltimore/DC is a struggle!
One thing this has brought on for me is a creeping return of the sarcoid fears. I have been on prednisone for 6 weeks, decreasing doses, and I do not want to have a flare up so soon! Of course, it is all about what I want, right?! But it is a bit scary to not know if what I am physically experiencing is just air-related or the start of a flare up.
I think I need to do some research on places to live where the air is still good - a wishful thinking list.

9 More Days

Kate gets married in 9 more days. Suddenly it is approaching with the force of a locomotive hurling down the railroad tracks. Looming, large, loud. Weddings. Much ado, but about something other than "nothing," I would hope. I think back to my first wedding; 1969. I was 20; pregnant; naive and terrified.
Then I see my daughters and their weddings and feel so much relief that they had more time, more living, much more engagement before they wed. And they had actual weddings, not secrets, not shame, not short beige dresses that were supposed to be RED!!!

I am looking forward to next week and seeing old friends again. Seeing my Midwest Fletcher family again. Enjoying the events and not worrying about outcomes. And I am looking forward to after the wedding as well. Maybe a small time for not thinking about much of anything. No lists, no budgets, no last minute things to do. I guess both sides are fun right now.

I have more energy and enthusiasm today than I have had for a long while. I can notice the difference myself. And it feels just plain good!

DIFFUSION

I had a pulmonary breath test yesterday and, yippee, I now have an oxygen diffusion rate of 57%. Up from 50% at the height of the inflammation. Such a small difference, but I feel so much better! I can breathe in what feels like a "normal" manner and I can actually do things which require physical exertion! 57%.

I can't remember what it was like to be at 100% and I guess I won't get to experience that anyway. This is about as good as it gets this time around. What a strange disease this is - no clue as to how I got it, no cure for it, no effective and safe treatment for it, and no telling when it will strike again. Or where it might migrate. Sarcoidosis is not just a lung disease - that happens to be where I contracted it. But sarcoidosis also shows up in the heart, the eyes, on the skin, lymph nodes, liver, brain, nerves, among others.

I plan to have my eyes tested because I have already developed cataracts in both eyes and my vision is dreadfully bad. I just don't know if they can replace the cataracts now though, since I do have sarcoidosis.

One of the interesting responses I have had to the space I have created around this illness is that I have withdrawn from all Internet activity regarding sarcoid. During the first weeks, I was compulsive about reading everything I could find, looking for online support groups, clinical trials, treatment programs, anything and everything. Then rather abruptly, about a month or more ago, I just stopped.

I removed my name from email lists, discussion groups, everything. I found that there are many sources of painfully and potentially dangerous misinformation on the Internet about sarcoidosis. There are also medicine hawkers lurking on the sites who flood you with emails about their miracle cures. Then there are the people posing as physicians with their own "certified" treatments costing many dollars. The only thing they have that qualifies for being certified is themselves! And scare tactics and stories abound. A lot of the "groups" feed into each others' fears about treatments and tests. They make claims about some new diet or vitamin they use that cured them, and for me, that is too small of a sample size. Or they rant about a reaction they had to a treatment drug, tarring all pharmaceuticals with this unverified brush. ENOUGH.

Breathing

It has been actually a few weeks since I have focused on the sarcoid. What is it again? Well - here is the Penn State Clinic definition:


Sarcoidosis is a disease of unknown cause in which inflammation occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues.

Causes, incidence, and risk factors:

The cause of the disease is unknown. Sarcoidosis is marked by abnormal inflammatory masses (granulomas) in certain organs of the body. Granulomas are clusters of immune cells (macrophages, lymphocytes, and multinucleated giant cells). The disease can affect almost any organ of the body, although it most commonly affects the lungs. Sarcoidosis can be acute, subacute, or chronic.

Possible causes of sarcoidosis include:

Hypersensitivity to environmental factors
Genetics
Extreme immune response to infection
The incidence varies widely according to race and sex.

It is more common in African Americans than Caucasians. Females are usually affected more frequently than males. Onset of the disease typically occurs between the ages of 20 and 40. Sarcoidosis is very rare in young children.
Treatment:
Sarcoidosis symptoms often gradually resolve on their own without treatment.

Severely affected patients may require treatment with corticosteroids. Therapy may continue for one or two years, although some of the most severely affected may require life-long therapy.

Immunosuppressive agents, such as methotrexate, azathioprine, and cyclophosphamide, are sometimes used in addition to corticosteroids. Rarely, some individuals with irreversible organ failure require organ transplantation.

Expectations (prognosis):
Many people are not seriously ill, and the disease may resolve without treatment. Thirty to fifty percent of cases resolve without treatment in 3 years. About 20% of those with lung involvement will develop residual lung damage.

Complications:

Diffuse interstitial pulmonary fibrosis
Pulmonary hypertension
Anterior uveitis
Glaucoma and blindness (rare)
Cardiac arrhythmias
Cranial or peripheral nerve palsies
Kidney stones
Organ failure, leading to the need for a transplant.

AIR QUALITY is moderate to good for today which means I can get outside and not worry. Actually, I haven't been worried because it is just a part of me now and why obsess about it! I "unlisted" myself from all of the sarc feeds, web sites, and chat groups as I really do not feel a need to have it in my face. I think they feed into creating more fear, misinformation, and promises of miracle cures that don't exist.

QUIT Smoking!

NATIONAL QUIT SMOKING WEBSITES

American Legacy Foundation – Raises awareness of the toll tobacco has taken upon women and encourages women to seek help to quit smoking.

American Lung Association – Hosts Freedom from Smoking Online, a step-by-step quit smoking program based on the successful group classes. Now you can receive help 24 hours a day in the comfort of your own home at no charge!

CDC Office on Smoking and Health-How to Quit – Federal government site with links to quit smoking resources. Also maintains complete information and publications on tobacco health effects, research and Surgeon General's reports.

The QuitNet – offers smokers an on-line support community, forums moderated by counselors, and individually tailored advice to help them kick their nicotine addiction. http://www.quitnet.org Smokefree.gov -- offers science-driven tools, information, and support that have been effective in helping smokers quit.

Your smoking hurts MY lungs!
Secondhand smoke comes from two places: smoke breathed out by the person who smokes, and smoke from the end of a burning cigarette. Secondhand smoke causes or exacerbates a wide range of adverse health effects, including cancer, respiratory infections, and asthma.
There are many chemicals in secondhand smoke which act as irritants to the respiratory tract or which cause cancer. Secondhand smoke exposure can cause exacerbations (flare-ups) of breathing problems among those with reactive airway disease, asthma and other chronic lung diseases. Longer-term exposure to secondhand smoke can lead to lung cancer and heart disease.

More facts:

• Secondhand smoke contains over 4,000 chemicals; 200 are poisons; 63 cause cancer. Secondhand smoke has been classified by the Environmental Protection Agency (EPA) as a known cause of cancer in humans (Group A carcinogen).
• Secondhand smoke causes lung cancer and other health problems. The EPA estimates that secondhand smoke causes approximately 3,000 lung cancer deaths and 37,000 heart disease deaths in nonsmokers each year.
• Secondhand smoke is especially harmful to young children. EPA estimates that secondhand smoke
is responsible for between 150,000 and 300,000 lower respiratory tract infections in infants and children under 18 months of age annually, resulting in between 7,500 and 15,000 hospitalizations each year.
• Secondhand smoke is harmful to children with asthma. The EPA estimates that for between 200,000 and one million asthmatic children, exposure to secondhand smoke worsens their condition.
• Secondhand smoke can make healthy children less than 18 months of age sick; it can cause pneumonia, ear infections, bronchitis, coughing, wheezing and increased mucus production. According to the EPA, secondhand smoke can lead to the buildup of fluid in the middle ear, the most common cause of hospitalization of children for an operation.
• Secondhand smoke is harmful to adults with asthma and other respiratory conditions, and can provoke exacerbations of these diseases. According to the National Asthma Education and Prevention Program, “Asthma patients should not smoke or be exposed to environmental tobacco smoke. Tobacco smoke is the most important environmental indoor irritant and is a major precipitant of asthma symptoms in children and adults.”
From the American Lung Association