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A Different Holiday Book

Okay, so I rarely get the chance to do this kind of thing… review something that I use, have used, or would like to use. Today is different!  I get to review something that I’m absolutely loving. Yesterday, on Facebook, … Continue reading

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The Monday From Hell

Today is Tuesday Tuesday has to be better Tuesday is free small iced coffee at Dunkin. It has to be better. Yesterday I found out that the project that should have been going into production support mode was actually going … Continue reading

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Santa Hustle T-minus days and counting

So, here it is, Monday morning and I’m working my way through a ‘thank god I had some extras squirreled away because I figure post race will suck” prednisone taper. That means sleeping sucks and I want to eat everything … Continue reading

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Pain Changes You

I was once told that pain changes you.  When I was discussing the pain, I knew that the statement was correct, pain changes you.  But I was thinking more directly long term.  Pain, or at least the understanding and the … Continue reading

My RA eyes are getting really dry

Well, while this isn’t new… it is definitely very irritating (in a lot of ways).

For the last several years it has been a given that I have dry eyes and dry mouth  (sjogrens).  It’s kind of getting old fast.  But the newest development has really started to get to me.

I have started to have dry crusty discharge at the corners of my eyes.  Yeah, I know everyone does now and then, especially when you wake up in the morning.  Mine has gotten to be like that only fifty times worse.  My eyes are like that almost all the time and a few times it has gotten bad enough that when I tried to clean my eyes it has scratched my lower eye lid.

I use Refresh lubricating eye drops several times a day but the relief is only temporary and then it keeps coming back.

I’m going to have to break down and 1. rat myself out to my rheumy on Monday when I go in for my infusion and 2. go see my eye doctor to see what she has to say about the new development.  So far, I think that the epithelial basement membrane distrophy hasn’t gotten any worse but only the eye doctor can verify that.

When my hands/feet/hips/shoulders/knees hurt it’s annoying and they hurt but when it comes to my eyes I really start to worry.  The fear, I know, is needless… but… it’s real and it’s there none the less.

Anyone else have this interesting development?  I have been doing considerable reading but it is still kind of new and concerning.

 

April
11/26/16

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Thanksgiving Again

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Isn’t it interesting how it keeps rolling around, year after year and how every year it feels like it comes quicker and quicker? Here I am, sitting in my office surrounded by medicine bottles and memories, coffee cups and music. … Continue reading

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Well, This is New… Hip Flare

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So… I don’t know whether to panic or be passe about it… but… it’s definitely new. It’s been a LONG go-live with my projects at work.  It has been even longer projects.  I’ve managed to completely neglect almost everything in … Continue reading

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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Chilly and Rainy Morning

I’m up and enjoying Coco Wheats and coffee.  It’s still way dark but I’m watching the rain spatter the culdesac where the light splashes on the gray street.  There aren’t any deer this morning yet, but it’s still early. I’m … Continue reading

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Arava… Two Weeks Out

SO… I started on Arava about two weeks ago. I’m trying to see how I’m liking this as opposed to methotrexate.  It’s kind of a toss up right now.  Now was PROBABLY not the time for me to have to … Continue reading