Feeling Lame

Posted on March 10, 2012 | Leave a comment

Today is just kind of a totally lame kind of day.  I don’t know why.  Everything is feeling that way.

Thursday night I got a text message… three “words” (except not all of them were actual words… “how r kids” was all it said).  Guilt?  Yeah, probably.  So I did my good little girl duty (doody?) and crafted a nice long email response to the ever so personal text message.  AND… everything went off into /dev/null (the great bit bucket that passes for email for some people).  But… I did my duty.  Will I hear back?  not likely…. at least not until it is to the advantage of the texter to get back in touch with me out of obligation.  Sometimes I wish she would just send me a “hi how ya doing”text or an email that isn’t telling me about how wonderful she is or how much it would be wonderful if I would do something fabulous for her.  But I know better.  Some day I will get my 30th birthday sweatshirt and the Christmas cards for the last three Christmases.  And Peter Cottontail is hopping down the BUNNY trail… lameness

I know that I will get to hear about how much I don’t need to go spend time with my son while he is having his VEEG test week after next.  I should have been there more for them when they were little, now I don’t deserve to pretend to be there for them.  Yeah… it was put that way.  It isn’t like I’m already beating myself up for the fact that I had febrile seizures and maybe part of this whole epilepsy thing is my fault.  It’s not like I don’t already beat myself up because I worked so much when the kids were little.  It isn’t like I’m not already pretty much the best in the world at beating myself up.  I can’t fix it, I know I can’t fix it.  But I really don’t need people who I KNOW don’t matter making sure I’m aware of how much I don’t deserve to be there for my kids… feeling lameness…
Add to the VEEG deal, he had his wisdom teeth out yesterday and I had to go to work and couldn’t be there for him for his surgery.  I think that is when this whole lameness feeling started.  I know it is “only” oral surgery and there wasn’t anything I could really do there… but I was 40 miles away and feeling very insignificant… and sad… lameness…

This morning, I made chili.  That added to my lameness feeling, too.  To start with, my mom and I chatted during our phone call this morning about stuff.  One of the things was the fact that they were having dad chili today (huge pot of chili, all the kids who aren’t half way across the country would be stopping in for a bowl of chili and a chat) and I talked about the fact that I wanted to make chili because it would be soft enough to not have to chew (I forgot about the TINY little fact that tomatoes burn open wounds and Adam has several open wounds in his mouth… duh).  I was supposed to tell Amandya that we would be able to vicariously participate in chili because we were going to have it at the same time.  I did.  It made her cry.  lameness for making her cry… lameness for making Adam’s mouth hurt…
AND, I always put a jar of picante sauce in my chili.  Opening the jar this morning brought me to my knees.  It made all of my knuckles scream and brought tears to my eyes.  That made me realize that 1.  I am entirely too stubborn for my own good and 2. lameness in a whole different way… :0(

In my head, I know… yeah… I’m doing this to myself.  I’m not lame (except for the ‘it hurts’ kind of way… and I just have to suck that up and realize that it is what it is) and I’m messing with my own head… but it was just that kind of day.  I feel very far away from home.  I feel very insignificant.  I feel very very disconnected.  I see how much pain and fear that so many of my friends are going through and I know I can’t help and I can’t fix it and I want so badly to help… and I feel lame… And I keep reading and re-reading the form letter that I got for putting in my “application” to be in a “hands of RA” book and realize that even among my own people I don’t fit in or belong.  My hands hurt, but they don’t LOOK like they hurt… I am one of the people who are invisible enough to be invisible.  I am one of the proverbial ‘poster child’ people who look healthy enough to  be really invisible… and I’m not even deformed enough, I don’t even fit in with my own kind.  Lameness…

So, the rain falls down and splashes against the window.  The coffee is cold now but still as yummy for all of its creaminess.  My shiny new Hobbit Feet (since Amandya swiped her hobbit feet back now that I broke them in and they are easy to put on) are warming (on my feet) under the heating pad. (Amandya got a wicked cool light blue and gray pair of shiny new hobbit feet too… Yay REI… she is running around with black and white striped toe socks and her hobbit feet below men’s basketball shorts and her Taco Bell hoody).  I’ve discovered Buff Headware that is keeping my head warm and hiding my hair from myself (it looks better to have a wicked cool purple hat thing going on than to see how thin my hair is being… and I’m deliberately ignoring the hair restoration commercials and the “this is how you can make you marvelous main of shiny flippy amazing hair look even more amazing” commercials).  The pine scented candle that I have burning by my side makes the room smell yummy… I’m working my way out of my lame feeling…

How do you shake the sulky feeling that you sometimes fall into?  I’m usually the one who always wears a smile (even if sometimes it feels like a clown face).  I know that I will shake it… but in the mean time, I really don’t like feeling this way.

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Posted in Down Day

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I’m Sick, but not Contagious..

Posted on February 15, 2012

.I have a couple friends (yeah, I know, that in itself is a miracle as far as I can figure lately… I’ve been having a very “just want to crawl into the closet and cry” kind of time lately and … Continue reading →

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Finally Enjoying the Quiet

Posted on February 5, 2012 | 2 comments

The house is asleep late… or at least very quiet.  Even the dog is loafing later than usual… that might be her leg aching from the damp cold morning and when she wants out, she just comes to look at me, not even a scratch on the door.  I took a nice long hot bath… easing some of the aches, but not all.  My knee and my shoulder this morning (up from “just” my knee yesterday) are complaining… but my tootsies are warm and my fingers are working well, so I finished a couple more chemo hats.

It’s been a long couple weeks.  I’ve spent most of the time trying to protect and heal my little herd.  It hasn’t been easy.  It has caused so many hard feelings for so many people.  I’m trying to figure out how to heal the rest… or how to deal with the fact that I can’t.

I’ve been thinking an awful lot about toxic people this week.  Too many people are already hurting in this world with physical and emotional pain.  Why do people (who are probably themselves hurting in some way) have to add to the pain of others?  I hope that it isn’t really intentional on most people’s part.  It would make me feel much better if the causing of pain from one person to another was purely accidental.  And for the most part I think it is.

I may be a pollyanna… I may actually be worse than a pollyanna… but I would rather believe in the good rather than to live my whole life believing that everyone who isn’t exactly like me, or everyone who I have never had the fortune to see face to face is evil and wrong and bad.  That mentality is what keeps wars going and that causes bullycide and other violence.  Live and let live. Hate is entirely overrated.

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Posted in bullying, Journalling

Contemplation…

Posted on January 21, 2012 | 1 comment

It has been a thoughtful week… thoughtful, as in a week full of thought.  I’ve decided (again??? eeesh) that it is okay to be me.

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…

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Posted in reflection, rheumatoid arthritis

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Hands

Posted on January 13, 2012 | 2 comments

 

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!!!

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Posted in rheumatoid arthritis, Writing

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Reflections on Jury Duty

Posted on January 10, 2012 | 1 comment

So… yesterday I reported to jury duty.  Actually… TECHNICALLY, it wasn’t to jury duty, it was to see if I was to be called to possibly sit a jury panel.  Turned out I wasn’t one of the people who got to be called to sit a jury, but it was definitely a day of education, regardless.

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?

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Listening To The Rain

Posted on January 9, 2012 | 3 comments

Was up a lot last night.  A couple storms blew through and it got way loud and lots of lightning.  Poor dog is never rattled by storms and this one rattled her.  Now, five hours later, the rain has quieted to just an easy slow rain on the window.

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.

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Posted in Journalling, rheumatoid arthritis, weather

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Words…

Posted on January 8, 2012

You know… I’m finally coming to the place in my head and in my heart where I understand that I need to just stop fighting my own reality and give in and do something about it.  I’ve spent a night … Continue reading →

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What RA is like

Posted on January 2, 2012

This was posted in a group I’m on on facebook.  I went hunting and found it here as well (and found out that it can be shared with attribution)   What RA Is Like: A Letter For Family and Friends … Continue reading →

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A Bright Shiny New Year

Posted on January 2, 2012

So, here I sit, January 2, 2012 looking back and looking forward. 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 … Continue reading →

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