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On being authentically me

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Yeah, it’s not like I have much of a filter, so being authentically me isn’t usually a hard thing to do.  When frustration runs rampant the filter I have becomes nearly nonexistent. I have a low threshold of patience for people who repeatedly do the things they forget they are supposed to do and a lower tolerance for the statement… just this time.  When I hurt, I have an even lower tolerance for absolutely positively NO personal space (and that happens a LOT).

That’s not really what I mean by being authentically me.

I know it is very misunderstood.  I know it is very ridiculed.  I know no one understands how much it means but they do seem to think it it is PURE FREAKING MAGIC and that the money (what little of it that is actually generated… making it actually a waste of time) will come without spending more then ten or fifteen minutes a year on the actual act of writing.

I also know that is is what keeps me sane.

It is the eve of NaNoWriMo again.  And this year I’m going to probably try to spend ten or fifteen minutes a week on doing something I absolutely love without publicly committing to doing it because I’m really tired of feeling like an epic failure because, in the end, everyone else comes first anyway.  But as the eve of the great event dawns (it’s not that it is halloween… it is NaNoWriMo eve) I take time to reflect on me.

My hands are screaming this morning (it is infusion day), there is a chill in the air. I love this time of year but I really just want to have the time to enjoy this time of year.  I think back on all of the fall days that have come and gone.  The days when I got up and went to the bus were the days that I loved breaking the newly formed ice on the shallow puddles on the road.  The days when I listened to the still quiet with the frost clinging to everything and listened to the creak crack of the ice giving way under my feet.  I miss the smell of rotting apples as I hid in the few remaining leaves in the transparent applet tree (I wonder where I can buy a transparent apple tree… those apples came early in the year… mid summer… July apples… and were the best for it).  Everyone knew where to find me… I was being so cute up in the tree writing… being stupid because everyone knows that people like me are epically doomed to failure (but… shhhh… I didn’t fail… I didn’t fail and no one who was sure I would even really cares).  There was a huge old maple tree high (high??? as I grew older, the high hill grew smaller and smaller) on the barn hill… it’s leaves always changed early and it was the neatest tree… some of the leaves went orange and others brilliant red.  The hog hickory nut tree always dropped its empty shells all over the ground.  Walnuts sent the smell of green black husks all over the play yard.  Every year they were gathered and put in baskets and every year the baskets were dumped somewhere because the nuts never got used.  And the dry rattle rustle of the corn left too long in the field played the music of fall.

Yesterday I ran away from home and went to the park.  It was amazing.  When I got there the fog was low and heavy on the pond.  The geese were just kind of hanging out chilling and it was peaceful in my solitary world.  I heard the leaves falling as they gave up clinging to the branches to tumble to the ground. I flushed a deer (beautiful 12 point… I startled him and him leaping through the weeds startled me), I listened to soft his of goose wings as a flock flew over (their wings cutting the silence softly… a honkless lullaby), and I walked and looked and remembered…

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I walked, I listened, I inhaled the morning, and I remembered.

Memories cling tenaciously
so much fluff
stuck to the insides
and in the end
it takes but a breath
to set them to wing.

Too many times I am too busy (and entirely too short tempered) to be able to remember.  Sometimes I need to be reminded.  Sometimes I need the panic attack that comes with being curled under the desk in tears because I just can’t BE everything to everyone ALL the time no matter what anyone else seems to think, sometimes that is what I need to shake some sense into me… (sometimes just the sight of my bracelet, too) to remind me that it is okay to be authentically me.

Love and light
Happy NaNoWriMo eve
April
10/31/16

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And we’re off

imageSitting at the airport. The beautiful sunrise so close to boarding bodes well for the trip… I hope…

Snarky butt head man got to move to a window seat after all. I would have made him stay in his ASSIGNED seat if had been that bitchy to me after I had been as polite as the flight attendant was to him. Sarcasm isn’t always required. Sometimes polite works better.

Take off was on time and timed perfectly. The sun was pink and orange and gold on the surface of Lake Erie and it glowed silver off of the top of the Key Bank building… My now version of the fish building in Austin. I miss you angel boy.

Fog snuggles comfortably along the river banks and vallies. It is reluctant as I was to get up.

My shoes are a little snug this morning. I’m glad I had my prednisone to toss in my pills that have to go bag.

I had to rummage to find a pen to take notes with on the air sick bag. I’ve come to realize that I rely on them greatly when I fly. Not for their intended purpose. Rather as handy note paper. The restaurant napkin of the sky. I make some of my most interesting observations on air sick bags. I have them squirreled away… Loathe to part with them even after their words have been transferred for posterity.

And through the clouds I fly.

Eeyore (good grief that donkey has seen it all) is once again my travel companion. The people behind me in security thought it was awesome. Older couple who work at Disney… Eeyore and my Donald Half Marathon shirt made for companionable conversation during the wait. I realized that I bought Eeyore and customized him that last trip to Disney before I was diagnosed. That is a trip that will haunt me forever. He is a welcome reminder that even when I’m gloomy the sun keeps on rising.

The Reaction

I know I’m guilty of it too, so let me start out by saying that I think this is just human nature and it doesn’t mean what it feels like it means when you are on the receiving end.

People hear (read, whatever) a comment you make about… seeing a Rheumatologist… or taking Methotrexate… or… whatever… and suddenly they get “that look” and they make “that comment”… oh, I hope you don’t have Rheumatoid Arthritis.

Of all the things I could have, I have to admit, RA wasn’t at the top of my list.  I probably would have picked something that sounded sexier, or that more people understood or could relate to, or that wouldn’t ever change the angles at which my fingers or toes pointed.  But I didn’t actually get a vote.  And frankly I don’t think I suck that bad at carrying on my life.  It could have been better, but it could have been worse.

I understand that people feel empatheticly bad that I have a forever condition that frequently hurts and that sometimes can knock the shit out of me and that might shorten my life and that (outside chance) could wind me up on disability some day.

It does suck that it hurts.  It way sucks that it makes me tired a lot.  Combine those two and it makes some days be way cranky days.

But don’t for one minute forget the fact that I do not let it get in my way.  When I’m not controlled, it has a huge impact on every day.  But I’m back to being controlled.  I’m back to taking Yoga (and starting to train for next year’s big races) and thinking about smaller races later this year.  I’m enjoying yard work (WITH my work gloves on, thank you very much).  I am back to writing for a contract.  I’m back to living my life.  Yeah, I have to be mindful and not stress too much and not work too much and to take time for myself, but I’m back to being me.

And today, I’m working from home (too many hours, I know… and I’m on pager duty so have to be “on line” till 8pm) with the windows wide open.  The birds are singing and the breeze is making my dozen or so wind chimes dance.  For a while, I worked from the front porch.

I was reminded this week that, there but for the grace of god go I by a friend I used to work with.  She is considering, very seriously planning on, applying to go on disability.  She is Sero-negative RA and has been fighting for a diagnosis for two or more years.  I understand why she would be thinking this way.  There are days that I am terrified of getting to that point.  So I fight.  I fight every day to stay ahead of my condition.  And I write, so other people know that they aren’t alone.  And I reach out to educate people, so maybe for some people, “the reaction” is more… Oh… that sucks… I’m sorry… Come on, let’s go have a cup of coffee (tea, ice tea, banana split…whatever).

it could be better.  But it could be worse.  Be gentle with yourself.  Know that there are thousands and thousands of us out here who have heard those words and we are more than willing to help you on your journey

Little Known Facts… October 8 2013… Favorite books

I actually had a conversation about this not too terribly long ago.
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My favorite book of all time is “<a href=”http://youtu.be/QKHar6X3Nnw”>The Lorax” by Dr Seus</a>s.
Now, I know there are a few people who know this, but it’s little known facts so… Yeah.
I remember when Dr. Seuss stories were on TV at least once a yeah and I always looked forward to watching The Lorax.

I got a coffee cup several years ago at Universal Studios (they have a land that is all Seuss) shaped like a flower pot that has the Lorax on it. It’s awesome!
Unless someone cares a whole awful lot nothing’s going to change, it’s not.
My second most favorite book is “Love You Forever”. I got a copy of this one for Mother’s Day this year from my 6 foot tall 21 year old baby boy.
I catch myself humming the lullaby I used to sing to him and his sister.

Little Known Facts October 2… Coffee Cups

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I collect Coffee Cups. I’m fascinated by interesting cups and I have cups to remember things.

I come by it honestly. I remember the den back home where I grew up. Lining all of the book shelves (and there were many book shelves, heavy with books) were mugs and cups. It was daddy’s den and they were daddy’s cups. The ones I remember most clearly were the mugs that had faces. They were formed in the image of… maybe kings… maybe playing card face cards… They were faces. The cups were all interesting. I never understood why the cups were there. I loved looking at them.

Growing up, I never really thought much about thinking about them. I never though much about coffee cups at all. They just were. They were to drink out of. They were to wash and put away. That’s it.

I’m not sure when, over time, cups came to be a “thing” with me. It just sort of evolved into a thing and suddenly I had more than your average number of coffee cups.

Knowing that I have more than “normal people” didn’t seem (still doesn’t seem) to matter much. I continued to accumulate cups.

I have cups from places we have visited. On my desk at home right now is one from Disney MGM (back when it was MGM and not Hollywood Studios) from the Osborne Spectacle of Lights; it is holding change. One I bought at the second hand store that has Figment on it painting Walt Disney World Epcot Center holds dregs of coffee. One from Scarborough Faire in Waxhachie TX that has a unicorn on it is there just because it is an interesting shape and because we go to that Ren Fest almost every year…. it is hand made and in my head the handle is on the wrong side, because I’m right handed and when I sit it on my desk and try to use it for coffee, the picture faces away from me if the handle is where I like to use it.

I have cups that people have given me. I have my Auntie cup sitting on my desk at work where it is used every day. I have my Starbucks cup on my dresser with crochet hooks in it. I have my snowman on my dresser with push pins in it. I look at them (touch them) and smile remembering who gave them to me and why.

I have cups that I bought just because they interest me. I’m bug lady. I have one with butterflies on it and one with ladybugs on it. They are goofy but they make me smile. Or because they bring back memories from my childhood. They aren’t “cups” exactly, but glasses… I bought a set of aluminum glasses in gaudy colors that remind me of when I was a kid at Grandma’s house. I see them… touch them… I blink… and I’m reaching HIGH into the cupboard in the kitchen up at the farm. I’m smelling the cistern water, seeing the dirty screen in the door with the crank out pieces of glass and the rubber bands hanging around the door knob.

October’s 30 Things You Didn’t Know About Me

I saw this post

http://spoonshortage.wordpress.com/2013/09/16/30-things-you-didnt-know-about-me-%f0%9f%91/

On a spoonie blog that I just recently found thanks to Facebook. I love the idea of posting a fact a day that might be way obscure. I think I’m going to try to do this!!!

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All about the perspective

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So, I’ve been dwelling a good bit lately because I know that people think I’m as dumb as a box of rocks. My post yesterday kind of dwelt on that. I’ve been torn between being dumber than a box of … Continue reading

Laborless Labor Day!

Walk today felt wonderful!!! Left the house, just in time to see a few wonderful morning glories blooming in the 8 am sunshine. It was warm and humid, but not too horrible for the walk.
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8508 steps (2000 steps a mile, that’s 4 miles)
8:11 – 9:15
4.25 mph
Nearly sufficient, even with a pee pit stop, to not get swept at Disney.
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By the time I got home, I was hot and sweaty. And I felt wonderful!!! By the time I hit the door, I was confident that I would not get swept.
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I’ve decided that, no matter how well intentioned it is, hearing how much you don’t stand a chance of actually completing a race and how much your even trying to complete it is going to ruin the day in the parks for everyone. It is demoralizing. It’s even more demoralizing when it comes hot on the tail of knowing that I’ve lost five pounds and that I actually did a day in 90 degree heat and 65% humidity at race pace.
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I realize that everyone else is much better at this than I will ever be. Everyone. Everywhere. I get it. But I don’t have to be better than anyone except maybe better than I was yesterday. This is about me. I don’t care if that sounds selfish and bitchy. It’s about me. It’s my race.
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Post workout… A huge glass of chocolate milk and an omelette.
I know I can do this. And I will do this. Motivation be damned.

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Broken Graft

Broken Graft I grew up on a farm. It wasn’t a formal farm. It was a family farm. Even when I was small it had fallen frequently to disrepair. The walls of the barn were even then being pushed out … Continue reading

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Labels

The last few days I’ve come to realize that my whole life I’ve been some kind of label. Sometimes at first glance the labels were put there to encourage. Usually they were kind of derogatory in flavor though. I’ve been … Continue reading