I’ve seen fire and I’ve seen rain

And of course I have seen sunny days that I thought would never end; I worked outdoor booths for Phoenix Comicon last week-end.

And it was a Dicken’s of a time for me, you know the best and worst of times. Our challenge from Matt Solberg and Joe Boudrie, the Geek Overlords, was to make this year’s programming just 10% better than last year.

I won’t know for sure until the surveys are all in and tabulated but I think we achieved success. Outdoor programming rocked it!

I had the best staff a coordinator could wish for, all were new to volunteering for PHXComicon, and most had not met each other before helping with this event, Matt was just recruited to our team at a meeting this spring. Amie, Ann, Denise, Matt and I developed a familial camaraderie that I already miss. I cannot wait to work with them again. I was pleased as punch to be CC’d on a letter to overlords Matt and Joe detailing what a great time volunteer Matt had.

From Build a Bear employees to MGA Superheroes, from Paleontologists from the Mesa Museum of Natural History to AZ SciFest volunteers to teenage Robotics teams and the US Army dragster, the booth guests for the most part were enormously fun, kind, and all around incredible to work with us on all our changes and rules while still providing a little bit more for attendees (Nestle being an even more glaring exception for its inability to follow rules)

I need to do my own evaluation of what worked, didn’t work, etc and I need to send that up the my own chain of command So tho enable next years coordinator to learn from my experience, an advantage I did not have.

The Synergy Art Project got a few takers (but that is another blog)

And I got to hug some of my favorite authors, who still actually remember me even though they are now famous

..that and finding this incredible new author whose book “Revision” is a MUST READ

And having two extremely special guests show up at our Archie panel

So Comicon was the best of times….

The worst is all personal and is as minor as two broken teeth, a direct supervisor whose communication style meshes with mine like cold molasses does with peanut butter, and sudddenly having to foot the whole hotel bill and then as major as learning my foster mom, another strong woman I love, is diagnosed with cancer, even as I and a whole army of family and friends have say Good-bye to Mary. No more fatigue, or vomiting or bleeding for her, I envy her that, even as I cry for her absence.

My new normal is a far cry from 18 months ago in strength and endurance but I am stable and moving forward again even as new parts of me seem to want to fall apart. I cannot explain how strongly I wish I could trade places with my friends, I would gladly give them my life if they could get better. The first time I tried to make that bargain with God I was a teenager and the woman dying of cancer was my mother. But it didn’t work then and I don’t get to pick now. As friends who deserve it more falter and exit this life, I just seem to get better yet again.

I gave up asking why a long time ago, its a question that leads no where, instead I am asking myself how I can best use this newest lease. That is how it feels, like I am renting life on these short term leases that I have to re-negotiate far too frequently for my taste.

So many people I thought I would see just one more time again.

leave the light on for me, I just have a couple of things to finish up here…..

Why Don’t you Build Me Up, Butercup

I am a Geek, and what is more geeky and wonderful than Legos! I have tubs of them and I love to create towns, vehicles and mosaics, no Kragle here, but sometimes I just want to build by instruction. I also find Lego are great to share because I can thoroughly sanitize them between patients.

So I was so excited to see an ad on the back of my http://brickmag.com/ for a way to rent new sets.

I just have to share, if any of you are brick crazy like me, or have kids that are brick crazy, https://www.pley.com/ is a HUGE disappointment. I love Lego’s so I signed up at the lowest level for three months. $9.99 per month, first month free from a coupon on the back of Brick magazine (whole other nightmare).
Got my first set right away and it was fun doing all the builds. It was a 14.95 retail price Creator set and I had a ton of fun. Sent it back near the end of the month because this entry level plan only sends one set a month.

I packaged it up per instructions, verified it was received and happily sat back to wait for my next set, and waited, and waited, and waited and waited.
I called, thinking maybe their was a glitch, new company and all. The next day I was notified it shipped.

I got my second set, also a 14.95 creator set missing a major piece. I couldn’t build any of the three builds it made. So per their instructions I packed it up and mailed it back the next day for my March replacement set.

So it is now April 16, I have not recieved my next Lego set, Not a replacement for March or my April one.

I have emailed, called. So Done.

I cancelled, clearly this company has a better idea than execution.

Final Review: Save the money and just buy your own sets. Or Maybe try BrickLoot.

Next MONTH we will have our unboxing!
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You walked into the party, like you were walking onto a yacht..

A gavotte, in case you are interested, is a 18th century commoner’s dance in 4/4 time where feet are raised instead of slid. Rarely, I would suppose has anyone danced a true gavotte on a yacht, except perhaps the illusive David who watched the 1970 eclipse and bet on the winning horse at Saratoga, I’ve always kind of voted for the guitar repairman or Warren Beatty since Carly Simon dated both and both actually thought the song was about them.

However, that really isn’t what I want to blog about today, yes, all that was just my mental subtext of the universe starting my soundtrack with that song the last few days.

I may have mentioned before that all my titles (at least for awhile) are lyrics, because I do live to a soundtrack, but before I go on to what’s new, a follow-up to the last post. I really hadn’t meant the last post to be a request for money but a few of you incredibly generous readers again filled my heart with gratitude. Some went to bills, some went as directed to replacing my copy of Fiddler on the Roof and helping me make some magic for others.

Thank you, thank you, thank you. My actual medical bills are about $2000 away from being paid off again, just using essiac tea and the usual organic foods, positive attitude and long range goals and this time. It will all come together in the end, I have faith, but more importantly I also have a plan. If you want donated funds to go to something specific (medical bills, my charitable works, my trip thru the Appalachians please add the note.)

And to those who donated, I will follow my amazing friends Ann Videan (check out this amazing Author at http://anvidean.com/ )and Laurie Evans (share and support this funny woman through life’s many challenges at razzzberries.blogspot.com) example and write real “Thank You’s,” which does relate to the subject of my blog.

(But first, and very tangentially related, my new favorite word, encountered in my Botany for Appalachia studies is “peregrination,” now on to the real blog.)

Words Versus Communication, or at least that’s how it feels sometimes, like there is a war of words in progress. Not the trolling memes and name calling kind, although there are also too many of those, but a word fueled breakdown in human connection.

In my title song “Your So Vain,” Carly Simon had a crush (brief affair?) on an arrogant and magnetic man of common roots and new money and is a little bitter. Her meta self-referential lyrics not only demonstrate all the wonderful subtleties of meaning words can convey but were kind of a precursor to modern modes of meaning.

I am old enough to remember when the concept of communicating in most of the ways I currently communicate were just science fiction. I could talk to someone on the phone if I could confine my activities to the length of the cord and no one else needed the phone. I could write a letter, or go for a visit. The effort it took to tell someone something added gravitas to the words and to the relationship.

The receiver was part of the message and the purpose. Tone of voice, or posture, or even the ways the letters looked on the page; hurried and slanted or carefully crafted bits of spider web, illuminated the inner soul of the words.

If we wanted to talk to ourselves we addressed journals, diaries or our children and spouses.

Now more of my words are poured into empty space. I say thank-you with cyber cards where all the letters look the same. I instant message and email and tweet and post and like and blog.

Perhaps it is my age that makes me think that the more ways I have to share my thoughts and feelings, the more confused I am on what it means to communicate.

So I am going to go for a visit, write a couple thank-you’s and remember again that a story is only a story when it has an audience, love only love when it has a recipient, and ))U(( feels nothing like a warm pair of arms around your waist.

How can I hope to make you understand, why I do, what I do..

“Fiddler on the Roof” is a much better Passover/Easter movie for me than “Ten Commandments”, “The Robe”, or even “Hop” and we all know how much I love kids movies. The youngest daughter sings a song to her Father when they wait at the train station that is my song of exile.

I wanted to watch Fiddler this week. First excitedly, then more slowly, then finally somewhat resentfully I unpacked the rest of my stored DVD’s to realize that ALL of my classic musicals were missing. Now, I realize that this loss is just one more price exacted from my giving up and me almost giving in this summer. But somehow all this loss make me angry and I add it to $4000 the apartments are trying to collect, the money I still owe friends, and the friendships forever altered by their betrayal and I am too sad to cry.

No more “Man of La Mancha” or “Fiddler on the Roof” or “Mary Poppins” or “Sound of Music” left in my collection to cheer me up on the dark or hard days. And Friday was a very dark day, out of the past came a reminder of the time one of my “friends” copied my journals and shared them around, not to mention suddenly making me homeless. I was sharing his home, paying rent, at his request and he became violent and ordered me to move. I forgave him finally this year and was forgettting, then this a letter from the court about the evidence came to the place I first landed those many years ago, abrading all the healing. The echoes into my current situation became strong voices, and I bled profusely from the keen edge of friendships forever changed.

So instead of meditating, getting perspective, maybe walking or swimming to dissipate the overflow of emotions, or even journal and properly grieve, I felt sorry for myself.

I slipped back off into the “Poor Me” mire and mud. It is easy to justify self pity when one has a chronic life-altering condition. There are a multitude of slights and bad choices one can self flagellate with in any life, but add in disease and making a pit of self pity is a picnic in the park. So I did.

Ate poorly, marathoned old TV shows, drank alcohol, ignored the gym and exercise, thought about how unfair everything was.

OK, so my ate poorly is miles above “ate poorly” before I learned to love myself and nutrition. A typical day started with a cup of coffee, or two with Coffee-Mate Italian Sweet Cream creamer, three bads here for my body – not organic coffee, animal product in the creamer and all kinds of chemical as well. But then I would do a Vega One shake or Greens/Hemp/berry shake. For lunch, because I worked all week, I would have a Svelte Protein Cappuccino and a Luna Protein Bar. Not awesome either, piling on more synthetic processed food, even if it is organic, but I ate lunch and it was what passes in modern life for nutritious.

It was when I got home that the eating monster was its worst. Carbs, carbs and carbs, (popcorn, bread sandwiches, pasta) with a beer or a bottle of wine, the tiny single serving ones by the way and one good serving or microwave bag and only one carb a night but that is not an excuse but a way to see that even on my worst days, this move towards active goals, becoming a SOFT (Slow Old Fat Try-athlete) has changed me for the better.

I am, in all things these days, a light weight. I couldn’t see that positive this week, that at least now I am a light weight. Once upon a time, if I was food binging, I could eat an entire package of pasta cooked, and more, and I have memory of a time when one bottle of wine (the real size) was not enough. Seeing anything good about me or my life was not on the agenda.

Last night was the dark night, the bottom for this not pretty pity episode. I came home with a deep and burning anger at whatever runs the universe because of the patients I see and the parents I support in my job. Hit the front door of the place I live which is NOT my home and found no golden head to rest on my lap and look in my eyes and remind me that I only see the pixels, unshed tears and grief deepened the mire and I sunk into the couch.

I marathoned a respectably funny series (Garfunkle and Oates) that was, of course, cancelled after less than a season. Ate bread and chicken (free ranged organic but still, ME eating ANIMAL anything is always a sign I am NOT Ok), And got drunk on two chardonnays because I wanted to not feel, to disappear into a place where I am “normal” or how I perceive normal. I even pretty much ignored my boyfriend, because the fact a truly kind, handsome and charming geek loves me does not belong at a pity party.

Except for the part where I don’t think he gets me, or reads my blogs, or….. Yup, in the mood I was in last night, alone was the only place to be.


That is the root of most dark nights, disconnection from the rest of the human race. Sometimes I sincerely want to be able to be normal and just sleepwalk through life, consuming what pleases me without thinking of the long chain of events that make it possible and the infinite set of consequences moving forward if I make that choice. I don’t want to see music or emotions or in any way at all be “special” or “different” or “amazing.” I try to eat it away, to drink it away, this “me” ness that so offends.

Every coin comes with two sides, but to my family, my sons and my DIL and those I will be celebrating my grandsons birthday with today, heads or tails my coinage has no commerce. And that is the full eclipse. My light is dark. I go to bed.

This morning I wake to April in Arizona and a dog, the yellow lab who is still with me, that came as part of the package of the quiet solid Golden I am mourning, needs to pee. Yeager is dorky and clumsy and licks and wiggles relentlessly, has no idea how to cuddle and as his eyes and nose have gone, he barks more and has become somewhat unpredictable around strangers. However, this morning, he is exactly what I need. He depends on me, and loves me unconditionally, and needs me to get up NOW!

Yesterday, I watched the moon grow dark as I traveled to work with a little girl whose very Mitochondria are not her friend. I spent the day cheerfully holding her elbows or moving her arms, singing and talking about when she was “little” and I was her nurse, and her feet still worked. We discussed music and toys as I monitored the machines that do for her what her body no longer can. But the moon stayed dark, the sunlight never again moving from behind the dark muddy ball of “Life is not Fair.”

Today I wake to birdsong and the colors of sunrise only Arizona in spring can provide. Irregardless of me or anyone’s actions, a mockingbird perches in a blossom heavy tree whistles for dogs, imitates a woodpecker hitting metal, and then chortles before flying away again. More birds join the chorus and when I go inside to have my coffee on the couch, a hummingbird hovers by the screen, observing the human in her cage.

Life is not fair, I have done nothing to deserve this beauty, this breeze, this new day.

The eclipse over, I move forward, so I open my computer to write.
I am the middle daughter in Fiddler, following my bliss to Siberias my family never understands.

But there in my quests, I am home.

Just a spoonful of sugar helps the medicine go down…

However one must still take the medicine. That is one of many bits of wisdom that I have accumulated in my lifetime of adventures and books, a bit of wisdom from childhood complements Disney’s Mary Poppins.

I am happy to be known as the Mary Poppins Nurse, I knew she was a Time Lord long before Pop Culture acknowledged her origins. I knew she was a Time Lord when PBS was in its infancy and Oscar the Grouch was orange. However, I am not here today to discuss Time Lords, or Mary Poppins or other purportedly fictional bits of sugar that helped my wisdom grow and flourish, I am here to talk about the medicine.

Medicine is the tough stuff we have to swallow to become better: better health, better writer, better informed, better person. Medicine is often bitter with wide ranging side effects, not all of them pleasant.

I remember just how disappointed I was as a child when I read a biographer’s portrayal of Jack London (how I loved, loved, loved his books) as a soft, overweight man willing to trade his name to grape juice manufacturers for ten silver pieces, and as much likely to survive an adventure as a spoiled persian cat. It was a tough pill to swallow.

I was still too young to realize that sometimes more motivates a biographer than love and facts; yet old enough to know that not everything in books is real; I somehow expected much more of Jack. I vowed then, I was not going to be like Jack, I would be a lifetime adventurer.

I now have great empathy for that armchair traveling Jack I so despised as a child.

AlThough it is also good to know that one opinion was mostly false, more scholarly biographies have reinforced my original perception of Mr. London without ignoring his faults, the facts are that he did slow down as he aged due to renal insufficiency of unknown origin and he was one of the first to trade his name and image to a product for money.

I am still am an adventurer.

I still have to take my medicine, including the aches, pains and infirmities of age, disease, and a few bad choices.

But there is so much sugar in my life, from roses blooming outside my door, to smiles from babies and the triumph of met goals.

Today at Physical Therapy my exercise assistant (who is a mere 22 years old and cute as a button) said with awe, “You’ve done so much!”

My first response was, “I’m old, more time to do things.”

But the truth is, if my life had run smoothly would I have had so many adventures? I don’t think so.

Today I salute all the hard parts, the things that made me better, more interesting, the things that led me to realize there really are only three important questions when contemplating an action.

1. Is it compassionate?

2. Is it ethical?

3. Does it support my long term goals?

Now all of you go out and take your medicine and say a thank you for the sugar that helps it go down….

Straight to the Heart, and You’re to Blame

Good Morning!

Things that give love a bad name are buttered movie popcorn, playing addictive phone games, and shopping.

Things that go straight to my heart and kind of give love and my heart a boost are dogs, birds and pigs (sorry cats, you and I have that sort of love that bad young adult romance is based on, I love you, you kill me: i.e we can co-exist only with the assists of decongestants.) Also 50-80’s music and archery and swimming

First time out with Two Moons and loving it. Also great way to see what to fix!

First time out with Two Moons and loving it. Also great way to see what to fix!

That’s me using borrowed equipment on Sunday Mornings at Papago park. I had much fun thanks, and actually got 12 points in my first speed round ever.

Listening to a little Bon Jovi while I bring every body up to date on the life and times of this S.O.F.T. lady complete with stats, goals, recent challenges and needs and amazing life surprises.

Always on to start and end with gratitude let me tell you some of the universe’s recent perfect timing and fun surprises.

Back story on the first one is that I did a good deed that was very hard for me, I lent my Nintendo DS3 to a mom who had more need than I, complete with my Zelda game.
I really missed it last week as I wanted more than anything to disappear into anything game, glass of wine or box of popcorn to avoid the glaring absence of my beautiful old Golden.

Sunday night I got back from archery and the zoo with my honorary grandkids BAM and Tam (and their parents of course) and found a box from Amazon outside my door. Inside was a Disneyworld Nintendo 3DSLX, anonymous gift. So Gifter if you are reading this, like BIG BIG BIG hugs.

So I gave my 3DS, the one I got from Sara to this Mom. Lending her my game until she beats it, or I can replace it. Crap, I guess I am still a little selfish.

So I have real love in my life as well, like, you know, a potential rest-of-my-life partner which is both awesome and kind of freaky for me. He has also joined in with my trips to the gym and eating right, though he is quite calorie focused and I am more nutrition.

I am only on Essiac Tea for the cancer and less PTSD meds for the PTSD. My hair on my head is currently giving me a lovely layer of fuzzy stubble among the parts that didn’t fall out and so my hair has awesome body. Bad news is my genetics are showing and my eyebrows again need daily maintenance, as does my moustache. But this is to say I am getting healthier.

My current stats are 222 lbs, BMI of 42 and body percent fat of 41% (Steroids, self pity eating and couch only energy levels for a year will do that to a girl, but hey, I’m here to whine about it!)

Starting where I am…yesterday my steps were 4229 and it was truly all I could do! My goal is 10,000 steps a day. My swimming goal is a mile in an hour, and well I did 0.3 miles in 50 minutes. Did 25 meter lengths with pause then another length. Down from my first two attempts where I did 50 meters with just a turn.

So what are my big goals?
1. Ability to swim 3 miles open water!
2. Hike the Appalachian trail
3. Live to see Bam, Archer, and Tam graduate High School.
4. Publish a book of my poetry.
5. Publish a new fiction book I can be proud to put my name on.

Not much I know, LOL

What do I need?

Hiking gear
A definite plan…

What can you do to help?

Join me. Support me with comments or donations.

Make it your best day.

For now Namaste.

SOFT Crowfae rides, swims, and runs again.

I have a new gym membership. I really got it for the pool. When I started 5 years ago or so I was literally afraid to put my face in the water, then I got here. 2012-05-17_07-29-53_141. That length I am struggling with in the video is 1/4 of a lap.

I swam 4 laps, only one without a break. Sunday I start C25K, yet again. May have a triathlon in my future , may not. Biking is my bugaboo. sons teach me to ride bike! That is me learning to ride a bike also just a few years ago.

Then stuff happened and it became easier to make excuses than changes and decided to accumulate instead of experience, and watch or read about life instead of live it.

Now there were some reasons I had to do less for awhile, and celebrated my release to push my limits again by taking my date to the gymn.

I am a long way weight, strength and endurance from where I left off, but feel great this morning if more aware of some core muscles I wasn’t using before yesterday.

Strength and endurance are higher hurdles after 55, and when the scale once again tops 200 lbs.

But the biggest hurdle I jump as a SOFT geek (Slow Old Fat Tryathlete) is never the cardiovascular challenge of age and chronic illness, my love of food and crazily thrifty genes; it’s the challenge of allowing myself to look foolish, to be last in competitions , and still repeatedly show up with 100% effort when it’s not my primary skill set.

Who else has to play against the voices from their past (and now luve in their head) that told them to stick to what they were good at and laughed at clumsiness, size and struggle to learn?

But what I know is that I start where I am, and just keep moving forward until I get somewhere I need to go.