Let me start out by saying that I’m really not very good at reading people.  It took me quite a while to realize that there is a very reasonable explanation for this… Aspergers.  Not making excuses… some very amazing people are Asperger-ians… just stating facts.  It explains why I have a very unique sense of humor, why I can’t play poker (and why I’m not invited to several kinds of meetings at work) and why I don’t read people face to face very well.

This week one person who I have come to realize really is just poking me when he says stuff comments on my Hairless Hobbit Feet and my wicked cool fingerless gloves made comments again and then did the knuckle bump thing.    The knuckle bump thing gives it away… that and the fact that the first time he saw me wearing my Vibrams he told me the story about how he was out to dinner one night in town and he ran into the guy who invented them and was out trying to scare up support in one of the weirdest (keep austin weird) towns and one of the running-est towns around…

I’m still trying to work out the conversation earlier in the week when someone read my RA hands poem and made what I’m trying to decide if it was a snide remark or not… “Woo, people read what you wrote on the INTERNET…. what you wrote… on the INTERNET… wooo”.  That one really hurt.  I’m not entirely sure why it hurt, I really don’t fundamentally care what people think of me much anymore, but I am really proud of my poem.  I’m touched and proud and amazed that it touched so many people, that so many people like it.  I’ve had dead tree books published.  I’m not convinced more than 500 people have read most of them.  MOST of them I’ve never seen more than my advance on royalties.  I’m proud of them but… you know… yeah… this poem touched people and somehow that matters more.  I’m not sure if the person who commented was just poking fun or if that was really what they thought…

You, person who is such a putz that you are scared of me because of my scars, you can  bite me. I’m done with the whining, I’m done with hearing about how I give you nightmares just because I had my broken arm fixed and how my horribly deformed bumpy hands scare you silly.  Bite me.  I’m done letting your shallow criticism hurt me.

I’m really deciding more and more that the me that I am is okay.  It beats being some of the people I have been learning about this week.  Hurting people just because you can isn’t cool.

I kind of like me.  I haven’t always been able to say that.  I can now.  And that’s a good thing…

I’ve been thinking a lot about hands.  Between looking at, and thinking about, the pictures that RA Guy put together on Show Us Your Hands on Facebook and writing about those hands and other hands here and here and thinking about my new RA nodules, I have been thinking and talking a lot about hands.

Having hands that hurt or having hands that are twisted and that don’t work quite the way they were designed to work really does affect you.  Until I was talking to a young friend of mine about hands today, and until he was talking to me about noticing how many things that we do every day with our hands, I guess I just didn’t really think about what all hands do or should do.

The one thing that hands do that is hardest to deal with when hands… well… don’t… is holding hands.  When you hands hurt, it is hart to be willing to reach out to hold someone’s hand.  It is hard, when your fingers are twisted (or overly lumpy and bumpy) to reach out and be willing to let people hold our hands, touch our hands.  It is hard to comfort or take comfort from other people if you can’t reach out and hold someone else’s hand.

Thank you Christopher for being willing to listen and for understanding.  Many people much older than you don’t and can’t.

I know what it is like to have someone see my hands, with their bumps and their scars, and explain in great detail how my hands give them nightmares.  I have a couple little bumps and those come and go and aren’t ALL that obvious.  The scars have been there, to one degree or another for…well… 14 years.  Since I broke it and hand it fixed and had it rebroken and had it rebroken and carved up with cadaver bone put in (the dead guy in my arm story was really cool) and finally rebroken and carved up and fixed right.  I’ve never been PROUD of my scars (and the butt head guy who told me at least when I tried to do it I did it right and I was lucky they saved my life when I committed the sin of attempting suicide… I paid someone a LOT of money to create that scar, thank you very much).  I have rarely been ashamed of my hands and my scars.  Until she pointed out that I give her nightmares.

But hands really are important.  And when they hurt it can be inconvenient.  I’m very grateful that mine are not to the point where it hurts to hold hands.

My hand (not sure if my mom quite realizes the significance of this picture or not) finally works.  Or rather, my wrist finally works, the way it did before it was broken 14 years ago.  That is amazing.  I can hold my hand, palm up, without bending anything at an unnatural angle… I can hold BOTH hands beside each other and they are the same!!!

They call probably 600 people to report every Monday to possibly be on a jury. The first couple dozen leave because they have kids 12 or under who would not have adequate supervision if they had to sit a jury.  The next couple hand fulls leave because they have other qualifying situations (over 70, something else) that allows them to exempt being a juror. The next small herd left because they were disqualified by their status (they were convicted of a misdemeanor theft).  The last chunk to leave had a qualifying (given they were listening to their conscience) hardship that meant they didn’t have to stay, too.

People all around me murmured and muttered about how they could suddenly find a way to  get out of potentially sitting a jury.
Oh man and mine is even lower than yours.  Damn.

I got a low number on my summons.  My boyfriend said that low numbers always get picked.

I can’t afford to be on a jury.

I don’t want to take all of this time out of my normal life.

The three panels were picked.  26 for each of the two county trials, 56 for the district trial.  Most of the people were crestfallen as their names were called to go to a trial.  People, as they lined up to leave mostly seemed to be doing the “woohoo I got out of it” dance.

Then when I got home and started to look through the way other people apparently feel about jury duty, I was even more enlightened… People will do almost anything to get out of jury duty.

I wasn’t jumping up and down having a party when I got my summons.  Especially when it just so happened that I might end up having to serve on a jury on the day of my doctor appointment that I scheduled 8 weeks ago.  But after the initial “oh man” I just figured I should probably go into it thinking that it wasn’t meant to be an inconvenience in MY life (even though it appears that many people seem to think that it is personal and the world seems to be just out to get them).

If I were accused of something that I knew I didn’t do, I would want a jury to hear my case.  I would want at least a few of those people to take it seriously not just be there bitching and whining the whole time because they couldn’t get out of it.

On your way into the Jury inpanelment room (where the huge herd of potential jurors hang out to find out if they are going to be on a panel) you pass the statue of a soldier who died guaranteeing our freedom.  You walk RIGHT past his statue.  We take so much for granted.  All we (in this case) are being asked to do is sit our butts in a chair in a room for anywhere from 3 hours to a week depending on whether or not we sit a jury.  A week.  Sitting on our butts.

Yes, there are people for whom this will cause issues and I totally get that.  But for most of the people in question it is an inconvenience.  that’s all.

Would it have been an inconvenience?  Yeah.  I would have had to reschedule some doctor appointments.  I would have had to make sure people knew not to panic if they couldn’t get hold of me for a few days.  I would have had to worry about making sure how I would need to schedule my meds and I would have had to make sure I had some naproxin in case things got really ouchy.

But geeze.

What is really the bid deal in doing this?

I’m all curled up in a blanket and enjoying the rare sound.  It has been so infrequent that we have had rain this past year that despite the achies that this rain seems to have brought with it, I’m loving the sound.  I even hope that, eventually, we might get grass back rather than gray-brown stubble and a few intrepid weeds.  So far we have left the weeds because at least they are green and soft.

Hands are complaining this morning.  I know it is from the rain, and from the extra typing yesterday.  Ah well, it is what it is and it will be what it will be.  I will toss in my jar of Tiger Balm and my fingerless gloves when I head out to Jury Duty this morning. My commute this morning is ten miles north rather than thirty miles south.  It will be a short one and I get to see what Jury Duty here is like.  I’ not sure what the deal is, I looked at the county web site and it said the next jury trial is January 24.  I guess today is part of picking a jury for one of the upcoming trials?   I have my iPad all charged up so I can take notes on my fellow captives and so I can read.

I have a neat sore spot in the middle of the top of my left foot.  Not sure what it is but it has been there for a few days.  I’m trusting that I will make my rheumy appointment on Wednesday to find out.  I have a place just at my ankle of my right foot that feels like I could crack it if I tried really hard.  Except that I tried really hard a couple times and it brought tears to my eyes, it hurt so bad.  Yeah.  Pretty sure I will try to let it work itself out.

I keep thinking I need to haul my butt out of my nice warm bed and head to the kitchen to fetch coffee.  I get to take it a bit on the easy side this morning, I don’t have to be to the court house till EIGHT THIRTY!!!   I really should find something suitable to wear, though.  Not sure what one wears to Jury Duty today… should I wear my Mickey Ears?  Or… my unicorn head?  … ah… maybe jeans and a sweater (I am always chilly) and grab my hoody…

Happy Monday all.

Many of my most vivid memories of growing up… of being me and doing what I enjoyed… surrounded playing with and using words.  I love writing.  I love to find the shades of meaning in words and playing with that meaning.

My first real writing was when I was in forth grade.  We had a project for language class, write a story.  So I did.  I wrote The Cat, The Dog and The Jellybeans.  My teacher thought it was wonderful.  My family thought it was so cute but so impractical.

In fifth grade I spend as much time as I could in the creative corner in Mister Davis’s room.  I wrote about tying my shoe.  Everyone in my class made fun of me because I sat and wrote and re-wrote and re-wrote… and in the writing and re-writing I tied and re-tied my shoes.  It got me an A, and my family thought it was cute but so impractical.

In Junior High School (what my kids now call Middle School) I was on the school literary magazine.  I published poetry and short stories in every issue.  Some were good.  Some were turned down.  Looking back I understand why they were turned down.  They were forced and awful.  I loved being on the staff of The Pen’s Point.  It made my heart and my soul soar.  And my family thought it was cute but so impractical.  And now I was getting old enough to understand that impractical was the part that really mattered.

I told everyone that I wanted to be a writer.  I was told forcefully and often that “People Like Me” don’t write, if you write you hide it and you don’t get published and if you ever get published YOU are going to have to pay THEM, they will never pay you.  So I squirreled away composition books and notebooks.  I hid in the orchard and wrote.  I hid in the barn and wrote.  I hid in my room and wrote. I overheard conversations about how cute it was that I thought I was writing but it didn’t matter what I loved, it was cute and it was incredibly impractical.

In high school I wrote for me and I hid what I wrote.  A couple people found my notebook once and they liked what I wrote.  But it didn’t matter.  By this time, I understood that it was silly and stupid and I was never going to be able to do anything with it.  Dreams were stupid and doing what you loved was pointless.  Practicality was all that ever mattered.

I was supposed to be a teacher (a science teacher and an agriculture teacher and maybe in my free time I could be an english teacher because that might make my silly stupid dreams a little less stupid.  Didn’t matter that I would have had to go to school for ten years to meet just these dreams that other people had for me) and in my free time I was supposed to take secretarial classes in high school (I took three classes independent study already, what was seven or eight more) in case I ever got married to the wrong man and he ran up a lot of debt or ran off on my at least I would be able to feed myself and my ten kids… yeah… it was couched in those terms.  I could go to fifty different colleges, but no one had the money for ALL of those applications and no one would be able to afford to send me to college and I better figure out how to make my way in the world.

It took me a while but I figured out how to make my way in the world.  I went to school as a non-traditional student in Information Science.  It was PRACTICAL!!!

Trouble was, I had to take English classes.  Gary Lutz taught my freshman English class.  I wrote an essay about drivers.  Not the way drive, technically but the people they are based on the cars they drive and the way they drive.  He wasn’t going to allow that subject.  In class, he said he was glad he had because it was a great essay.  He pulled me aside one day after class and told me that no matter what I thought I was supposed to be doing, I had talent and I was supposed to be writing.

YEARS of being told how impractical that was and hearing that even being an English teacher who dabbled in writing wouldn’t make enough money to support a family comfortably enough… and I discounted what a professional writer was telling me.

Skip forward several years and I was working in computers and I got angry about not being able to find a book that I needed to do my job.  So I wrote the book I was looking for after I lived through 900 hours in four months, I missed EVERYTHING for four months, and I lost thirty pounds from simply not eating or sleeping in the interest of saving the company money by working myself nearly to death.

I wrote it and it was published.  It wasn’t a “real book” it was a geek book (and to this day there is a distinction even in my own mind about the difference between writing technology books and writing things that real people want to read.  Flipping burgers pays more than most people make from technology books but I was writing, PEOPLE LIKE ME, can you imagine, and getting published and getting paid for it.  Not much… but paid.

Skip forward a few books and a couple years and my hands started to hurt after a long writing stint.  I started to hate writing because it was keeping me from being in my family’s life.  And it quit being fun.  I turned in my last contracted manuscript, got fed up with being BSed to by the publishing houses and I was tired.  So I just… quit.

The love of writing didn’t quit.  The words chasing around in my brain didn’t quit.

I started blogging.  And the words started oozing out.  I found out that my son has talent writing and I started encouraging him (I’ll be damned if I will tell anyone else what I was told) and I found out that my daughter hides her talent writing.

I started talking to people on facebook.

I started dealing directly with my rheumatoid arthritis and my sjogrens and my raynauds.  I started dealing with my daughter’s epilepsy and her slowly unwinding kidney problems and other health issues.  I started dealing with my son’s likely RA and possible epilepsy and everything else that is unwinding in my family’s life.

And I started writing.  I started a couple of e-books.  I started writing essays.  I started writing poetry again.  I put stuff “out there” for people to read and sometimes people read and sometimes people follow and sometimes people comment.  And the comments touch my heart and make me smile… or make me go hmmmm… okay….

Yesterday, though (and this FINALLY circles back to the beginning of the blog post.. LONG trip, huh?) I was looking at RA Guy’s Show Us Your Hands Project pictures of all of the RA hands from all of the people who willingly send in pictures of their hands… and I thought of all the stories that went with those hands.  All of the faces of the people, young and old, all nationalities, all genders, all sexual orientations, all ages, all socioeconomic stations, all of everything that is represented in those hand pictures and I cried and I wrote and I write a poem.

And These Hands was born.  And I published it and I thought about it.  I don’t post very often in most of the discussion boards that I read.  I really don’t figure I have a lot to contribute.  The People Like Me comments bit hard when I was young and overcoming them has been a REAL adventure…

And people read my poem.  And people liked my poem.  And my words touched people’s lives.  And I cried.

And this morning (happy new year) one week into 2012 I am re-dedicate my heart and my life to my words.  I want to help people.  I want to touch people. Kind of like a doctor (NO I AM NOT A DOCTOR, not even if you squint really hard) I want to “do no harm”.

Words can help.  Words can bring the whole world closer together.  I’ve started to understand (thank you Kathryn) that I may only have my heart and my mind and my words, but as long as I have my words, I have a voice and I can try to bring the world closer together, virtually and to bring just one little smile to someone somewhere.

What are your strengths?  Sometimes it is easy to get caught up in the right now and in the what is most immediate and not realize that we all have gifts and we need to let those gifts bloom.  Who knows who will be on the far shores where those ripples touch.

Happy Sunday.  I think it is going to be a beautiful day.

I’m trying, this morning as I wait for coffee to finish so I can warm my cold achy hands around the cup, to decide if there is anything I would change from the past year.  If I knew then what I know now kind of thing…

I would have gone to the doctor way sooner when my back was bothering me.  I would not have waited until I was falling down in the middle of the main street of town before I went to see why I was stumbling and why I was loosing control of my foot.  The injections in my back were NOTHING compared to the fear and the angst that not going caused.

I would have probably still gone through with my arm surgery.  The range of motion and the less pain in my arm is great.  I would probably have thought longer and harder about it had I know that enbrel wasn’t going to come back with the same effectiveness as it had before.   I’m kind of glad that I didn’t know what the ultimate outcome would be because that might have swayed my decision.

I’m wondering if my decision to fix my wrist has pissed of my RA to the degree that it appears to be now… My left hand (really?  my LEFT hand?  eeesh) big knuckle of index finger (bump there), thumb and the thumb side of my wrist aches most days… sometimes all day (especially if I don’t take anything and I neglect putting on my Tiger Balm soon enough).  My right hand, knuckle bump, achy in big knuckle of index finger.

Humira seems to have started helping my tootsies.  They are hardly stiff and achy in the morning.  Is it a trade off?  Probably.  Sigh.  Makes me wonder what this year will bring.

I don’t know how much harder I could have pushed to get squirrel girl’s Nephroptosis diagnosis.  I think it had to happen when it happened.  I’m just glad it DID happen and that she is better.  It taught me that many many many doctors are self-serving and they have distinctive quack when they talk to you… makes me wonder if that is why they have Doctor Bills… hmmm…  but there are doctors who are honest and have a clue.

I would have done what I did near the end of the fall college semester.  I stuck my neck out REALLY REALLY far and took a chance that I would make my son’d best friend really angry with me.  He isn’t… and he is safe and alive and off the prescribed meds that were messing with his feelings and judgement.

Now, coffee done and Tiger Balm applied, I look at the coming year.  I have a slew of sticky notes with motivational sayings on them ready to apply to random public places.   Everyone needs a little ray of sunshine and I’m making it my mission to be that ray of sunshine… if it kills me… I’m finding it to be a marvelous adventure.  I wish I had any idea about anyone who finds one of them… but… I will just keep posting them and thinking about how wide the ripples of my weirdness and my small pebble of kindness might reach.

Happy 2012!!!

I apparently irritated someone yesterday with my annoying little positive affirmation notes.

I was told (by my HR friend) that I needed to make sure that, if I put them up, they were on the bulletin boards in the break rooms.  Company policy.  So I did.

These ones were on the bulletin board wall in the small break room on my floor at work.  I stopped in to get tea water and there they were… all piled together, in the garbage.

I want to spread this to the people I work with, too, but if this is the response I get, maybe it really isn’t worth the bother.  Maybe it is just better to post these where other people will see them and not worry about anyone I work with and hope that other people get something out of it.

No, I will keep putting them up at work.  I’m nothing if not stupidly tenacious.  I will try not to get bent about who I figure took them down.  Onward and Upwards!!!

Maybe one of the others I put up will have brought a smile to someone.

So today I embarked on a new adventure.

I started writing motivational stuff on sticky notes and posting them in random places.

For the first three, I actually did what the basic original idea suggested… I placed them in the women’s bathrooms to bring a boost to women’s self esteem. These three pictures are my first three tentative attempts.

Later, I put a few more in the women’s bathroom, on the backs of the stall doors.
All of them disappeared.
I don’t really know if anyone took them or if the cleaning lady took them down.
I did go later to talk to my friend the HR lady to make sure I wasn’t going to get into trouble for putting them around the office floor. She said that she saw the ones in the bathroom, decided to go to the website, and didn’t think it was a bad thing. No one had complained and no one could take them as offensive so I should be okay.
So I made a few more and dropped them off on the way out. I put one by the elevator button in the office. I put one in the elevator of the parking garage and one on the computerized parking meter thing where it would be unobtrusive.
My adventure is going… now… to see where this adventure takes me.
Tomorrow I buy the Operation Beautiful book (electronic version) online.

The saga continues.

I woke up this morning totally not feeling the fact that it is the last day of the week before Christmas.  I have really not been feeling the whole Christmas deal as much this year and this morning I was just really feeling totally sad.  Not a really Bah Humbug way, just kind of sad that the whole season is almost over. I’ve missed having up my whole heard of Christmas Decorations… I’m missing “home” a lot this year.

I am at peace because my daughter is doing better with her kidney and with her epilepsy (we are even having an EEG right after Christmas to see if maybe we can start weaning her from Keppra.  Now to tackle having her knees better…

I’m worried about my son who is probably following in my footsteps with RA and Raynauds and who had a seizure on Wednesday night.  The RA/Raynauds was concerning enough for a 20 year old.  But the seizure really scares me.  What doesn’t kill you makes you stronger…

I’m worried about bear’s kidneys and uric acid levels and gout.

I’m thinking that it was just two years ago that I was diagnosed with RA.  I’m relieved that the Humera seems to be working and I don’t have to worry about what the next steps are.  I’m hoping that maybe eventually I will be able to wean back a little on methotrexate and maybe grow just a little of my hair back.

I took extra steps this morning, getting ready for work, I wore my poinsettia turtle neck (yay it is only going to get into the 40s today so it won’t be TOO too warm) AND my jingly Holy and Ivy crocheted cape (mid calf) to get me in more of the spirit.

I decided to stop and splurge on a cup of way overpriced Peppermint Mocha coffee (the giant size).  I got a gift card from the optometrist a month or so ago for filling out a survey and I thought it would be a great way to make myself feel less like not hauling myself into town to work in a company that is trying SO HARD to raise morale but that isn’t doing ANYTHING other than giving us the official holiday off and that only probably because it is in the employee handbook as being a holiday.

Yeah, see, it is totally not feeling like the holidays to me…

So I stop and pull out the gift card (and the extra change that it will take to pay the difference) and give myself a present of peppermint.  I pulled around to the window and was handed my drink and, with a smile, the girl in the window told me that the truck in front of me paid for my drink.  I almost cried.  I had been feeling so guilty about taking the money (even if it was free money from the card and even if it was only change to make up the difference) for the coffee.  I knew the card money would make my squirrel girl happier than even the yummy coffee would make me and I really should keep it for her.  And… SMACK… out of nowhere… I got hit by a pay it forward snowball.

So here I am… two hours later… nursing the remnants of my peppermint mocha.  i have the green stick that I guess is supposed to capture the steam and keep it warmer or something in my trusty pocket sized journal as a reminder that when you are feeling totally crappy sometimes something sneaks up on you and reminds you that a smile is just sometimes a matter of the smallest things, or how you look at whatever it is you are looking at.

I needed to be reminded that I really am lucky and things really could be a lot worse (they really could) and at least we have friends and we have each other… and the WHOLE world has each other if we want it to…

So here I am, jingling softly and remembering that sometimes you just have to smile because you have to smile and the season is in your heart.