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On Remembering You’re Imunocompromised

So… I’m sitting here freezing even after my hot bath. It isn’t all that cold, but, yeah, well, it is what it is. Raynauds… the gift that keeps on reminding you it’s there… and MTX… and… eh…. More than that, … Continue reading

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Traditions

So… Tis the season where I think more and more about the traditions that we have… The traditions that we make… This morning I was standing with my 18 year old baby girl in the line that wraps around JCPenny’s … 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

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Cold Front Friday

So… it was 91 degrees Fahrenheit yesterday. That’s about 33 Celsius if anyone  reads this who lives in a place where that is more common (as in ANYWHERE but in the US… ). About 9 last night a cold front went through.  Windy and … Continue reading

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Through This Window

Through this window I view the world.  It’s my window.  It’s my view.  It’s not your window or your view.  I respect (for the most part… I still struggle with some of the hurts and some of my human frailties … Continue reading

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When Someone Else Gets an Autoimmune Disorder

Irony is amazing isn’t it?  I mean, the very people who blow you off when you casually mention the fact that you have an autoimmune disorder that will affect the rest of your life are sometimes the very people who … Continue reading

Not Quite So Far Into Remission

So, here I sit.  Austensibly, I’m working.  Scripts are running.  I’m keeping an eye on what is running.  I’m getting ready for a move of the current enviornment to the almost latest and not exactly greatest technology that will get us by until a year or so from now.  Knock on wood.
I smell like Tiger Balm.
I’m thinking… contemplating… the fact that I’m probably going to be adjusting my MTX back up from .8 to 1 cc starting next injection.  I’ve been feeling my fingers and toes starting to ache and be stiff (okay, okay, technically “starting” might be a bit of a stretch) more and more.  I’ve been wearing Tiger Balm under my fingerless gloves… I don’t see any extra lumps and bumps.. but I’m feeling like I’m using my fingers and toes more gingerly than I have been of late.  So… I think going back up a little on the meds (as the doctor suggested I might) is my next step.  Probably should call the doctor and let her in on it… but… it is what it is.
I’m kind of sad thinking that I’m not doing any better than I am right now.  I’m going to put myself through some less than exciting loops and jumps tomorrow at soccer practice.  I will probably regret it after Saturday’s game but it’s all wonderful fun and that is a good trade off.
I’m viewing the resent events with mixed feelings.  I have liked the idea of not having to take as much of the chemo poison every week, but I like not aching even more.  So, we adjust. I guess I won’t be finding my hair growing back any time soon.  So, I keep a few bobby pins so I can use them (one at at time) to hold my thimble sized bun… and my BUffs… and I keep thinking… and keep dealing with the brain fog/chemo brain.
The adventure… continues…

World Arthritis Day

So, do you think there is any weird coincidence that on World Arthritis Day I’m taking my little boy to a second opinion Rheumy?  Not sure, but there seems to be some kind of poetic justice in it. I sincerely hope we get some kind of answers this time.  The recent visit to the shrink gives me some hope that answers are possible… so… knock on wood (gently… it is a hand achey kind of day).. .

 

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Gratitude

So… today I’ve been thinking… a lot… Yesterday was our first soccer game (Squirrel Girl and I are coaching 3 and 4 year olds with a couple 5 year olds thrown in accidentally) and the kiddos had fun.  They laughed. … Continue reading

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?