Monthly Archives: September 2012

On Being a Geek with RA

Okay… so…  I’m a professional geek.  I work in IT.  And I have RA (but RA does NOT have me).  I’m starting to FINALLY (after mumble mumble mumble years) realize that neither of these things necessarily define me. Now who I am.  Now what I am.  They are a part of me, but they are not me.

That said… IT does keep me (and my family) in drugs.  Looking at what it costs for the drugs we all take every single solitary day (or in my case every other week for my Humera)… IT keeps me able to keep myself and my family reasonably healthy.  Prescription medication runs about $5000 a month for all of what we all take.

This past week (and quite likely for the next at least 4 to 5 weeks) has been bad for work.  Extra hours, weekend work, and stress.  We don’t plan always overly well… and this is no exception.  The systems I work on don’t “make the company money” so they don’t really matter as much until the last possible moment then they matter a WHOLE lot and I have to scramble to make everything okay.    I know that by the time everything is said and done, I’m going to hurt and be exhausted.

When I started being the kind of geek I currently am, it was kind of easy to work 900 hours in three months.  I missed spring, but I got a bonus and it lead to my first book.

It isn’t so easy now.

I’m currently fighting a flare in my knees that has me gritting my teeth and trying hard to not look like I’m limping.  And I’m only a couple weeks into it.

It used to define who I believed myself to be.

I’ve let a lot of things (through the years) define me to myself.

But I’ve realized (a lot the last few days) that… much as I have been allowing what other people think or what I think because of it…

I wasn’t born in a cream can (thank goodness) so I don’t have to worry about the fact that they wouldn’t have opened it if I had been.

Yes, I melted crayons on the registers (coal heat is a HOT heat) and on the guts of the hot water tanks that littered the pasture field.  But the colors ran together is such beautiful rainbows.

I shot crayons out through the holes in wire spools.  They launch awesomely with a ruler.

I scribbled in notebooks

I colored outside the lines in my coloring books when I was 6.

I was touched inappropriately.

I was called little boy all the time by a relative

I played dress up (in gowns and heels) with an awesome little boy who loved dressing in dresses.

I buried dead toads and butterflies under the pine tree in the play yard.

I believe with all of my heart that the shanty in the play yard and the workshop at grandpa’s house are haunted.

I gave up trying to be as good as older siblings.

It took a long time before I was able to say the words “I am a writer”.  I had several published geek books before I was able to say the words.   I still have trouble saying it… but it’s true.  I have been a writer since I was in 4th grade.

I realized today that… if I hadn’t grown up the way I did… If I hadn’t experienced the things I experienced… I wouldn’t be who I am now.  I wouldn’t be able to understand the things I understand.  I don’t know who I would be. I don’t think I want to know who I would be.  I do know that there are things that I can understand that I KNOW I wouldn’t have been able to understand had I not lived what I lived.

If I could have picked a childhood… I might have chosen one more full of “yes you can” rather than one full of “people like you can’t”… but then I wouldn’t be me and maybe I wouldn’t be able to tell my babies that they can do whatever they want to do… to follow their dreams no matter what they are and no matter where they lead them… maybe I would be a person I don’t even like.

What about you?  How do you define you?  By other people’s standards and the way they talk?  Or by the way you want to be?

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Bright Shiny Saturday!!!

So… up and at em early this morning.  Completely fed up with my desktop computer, so I restored it back to its factory defaults.  Now I’m running all the happy little updates… and getting back all of my ‘extras’ like … Continue reading

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It’s Okay to Be Okay With Yourself

So… Dark and Quiet again this morning.  Isn’t it interesting how 5 am is like that pretty much every day south of… like… Alaska?  My feet are freezing and I have a fan on because I’m still having some interesting … Continue reading

Reaching the Young People

Sitting late on Saturday afternoon thinking…

I am going to be assistant coach for 3-4 year olds.  Squirrel Girl is going to be coaching.  We have “the Force” team.  9 kiddos that might range in age from later 2 years old to nearly 5… kind of a wide range of ages and abilities to pair to a team… but we will see where the next few weeks take us.

Our first practice is this coming Friday. We will meet the kiddos and meet the parents and get our groove on.  The most important thing we will be teaching these kids is that they can.  They are there to have fun… they are there to boogy and wiggle and laugh in the late Friday afternoons and Saturdays (game days).

Today, we had our coach’s meeting.  We did a mock practice with Coach Dan (who is an awesome man who has been in sports for just about his entire life) and it was hard to not become addicted to the “up” personality.  Now… to can that personality and start to emulate it!!!

Songs and games are going to be key.

The thing that struck me most was the most important thing to remember, we are there to have fun and to be silly and get them engaged and excited about moving and being outside.

I think we can do this.  I think I can do this.  I don’t have to know much about Soccer… all I have to remember is to try to make sure the kids don’t ever doubt that they can do anything that they put their minds to… that they are good enough.  This is where the self confidence starts to get built… now… to build it… to maybe have an impact on the lives of our future future leaders…

It sounds way less like herding cats than I thought it would.  It sounds a lot more like what kids need.  It isn’t about making everyone a winner, it is about giving every one the self impression that maybe they aren’t just a loser.

🙂

On Making A Difference

Today, I feel really really good.  I realized that I can make a difference… even if it is a small difference… it is a difference and it feels really good.

I was walking back to my little hovel from the break room.  The janitor (ALWAYS such a chipper man) stopped me and asked me if I was the motivational one in my team’s office who has been putting up the motivational sayings on the cube walls on post-it notes.

I looked a little sheepish… I have gotten in a little bit of unofficial trouble by posting them in the “wrong” places before… and admitted they were mine.

He teared up and thanked me for the ones that are there today.  The one in particular really struck him hard and made him think and made him smile.

Blessed are the cracked for they shall let in the light.
-Groucho Marx

He said that I need to keep that up and start putting them in other places because everyone needs a little sunshine in their lives, a little motivation a little smile to make them feel a little less sucky.

It made me smile.  It made me realize that maybe I do make a difference for the people I work with and around.  Maybe, just maybe, the people who make fun of me all the time are a little bit wrong…

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Poison Ivy, Margaritaville Radio, Hobbit Feet and 105

It’s Tuesday again and I’m sitting high atop the picnic table (yes, I know table for glass not ass… bite me) in the shade at the school.  I had a wicked good chat with my mom and now I’m taking … Continue reading

166 Days

So.. I just signed Squirrel Girl up for the Austin Half Marathon.  I get company and someone to share early morning training with…

AND… eeep eeep eeep eeep eeep…

We have commitment for a family vacation to Disney World January 2014 so she and I can do the Disney Half!!! I’m so excited!!!

I don’t know, still, if anyone will bother to watch us cross the finish line (other than Adam who will be waiting to medal us both this year) but I have a goal to meet this year AND next year and I am so freaking excited I can hardly stand it!!!

Stay tuned…

EBMD One of RA’s extra special gifts

SO…. I’ve got RA and Sjogrens and Raynauds.  They kind of all play off on each other.  RA is primary, the other two kind of are just co-existing conditions.  These kind of affect me to one degree or another pretty much every day.

My RA is pretty much currently controlled.  Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment.  It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs.  Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.

OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes.  In the next couple months that should start to take care of itself.  I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks.  I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!

This week I had my annual eye exam with my Ophthalmologist.  I always kind of view this with mixed feelings.  He’s… eccentric.  It’s late summer and he always whistles Christmas songs.  He has an incredibly interesting sense of humor.  He also tells me the ongoing saga of my EBMD.  Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.

This medical explanation is pretty good if a little… medical…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed.  Coincidence?  Yeah, probably not.

I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing.  One website shows that EBMD might help to diagnose Sjogren’s … so maybe…

So… I’ve been on Restasis for a couple years.  Apparently it isn’t helping a whole lot.  I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can.  Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears.  They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.

Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.