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

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October… National Journal Writing Month… October Version… Day 1

So… it is NaJoWriMo  and… because I really really need to prod my writing self in the butt (he he he… I said butt… sorry… LONG night) I think I’m going to publicly take up the challenge.  And I think I’m … Continue reading

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It’s been a hard stretch

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I woke up this morning (early, thanks to some puppy doodle having to go out NOW NOW NOW) to rain on the leaves outside my window and a chilly house.  All in all, not a bad way to wake up. … Continue reading

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Life Is A Through Hike

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A through hike, usually talked about in reference to the Pacific Crest Trail or the Appalachian Trail, is when you hike a long trail end to end.  I’ve always dreamed of hiking the Apalacian trail.  I’ve revised that dream.  I … Continue reading

When People Ask if the Cold Bothers my RA

So, I live in the great white (sometimes white… often for four or so months of the year there is at least the chance of white, and the resulting cold) northeast-ish.

Okay, I live in Ohio.  It’s not like I live in the wilds of Canada or in Alaska but I live in the north east where there is usually the chance for cold starting in late October and running through at least late February.

Yes, I knew it when I moved back north.

Yes, it was deliberate.

Yes, as I sit here in early August dreading my walk to work this morning and dreading more my walk to the car this afternoon after work, I long for the crisp autumn days and the smell of apples and drying leaves.

 

First  RobinNo, cold does not make my RA angry.  If I let my hands get too too cold they are very uncomfortable but, duh, that’s kind of a no brainer.  Everyone’s hands kind of ache if they are too too cold.  Cold makes my Raynauds a little bitchy so I carry hand warmers in cold weather in case I need them.  I buy them in bulk at <insert discount department store or super center here>.

I was told, when we started discussing Aspergers with the shrinks in Texas that if you have met one aspie you have met one aspie.  Aspies tend to have similar traits and experiences but it isn’t cookie cutter.  The same can be said for RA.

This is RA for me.  This is my reality and my experience.  August (hot humid weather) makes my RA a bit more on the bitchy side.  It makes my hands get floofy and it makes my fingers and toes ache.  It makes my jaws swell and leaves me with a headache that reaches from half way down my back between my shoulders, up my neck and stops at the bridge of my nose.

Rocky Days can have their own beauty

I have a jar of Tiger Balm in every backpack, purse and fanny pack I have.  I plunge my hands into cold water and revel in the relief.

This is my RA experience.  This is not to say it is yours. It is not to say it is anyone else’s.  I guess that has been playing in the back of my brain a lot lately.  The differences in how RA manifests, how it reacts to treatment, how it behaves in the body.

Guilty admission… I have gone looking longingly at the Facebook post of a friend after she was told that she can probably count herself as being in remission with RA.  I have to admit I’ve never understood why they call it remission, but that is a doctor thing.  I’m so happy for her that she is with less pain.  I pray that it stays asleep for a long long time for her.

I’ve been talking to someone I used to work with in Texas off and on about her experience with RA.  She has decided that the pain and swelling are just going to be her constant companions.  She is hoping that one of the newer drugs can help her but all of the biologics they have tried with her have not helped at all or if at all not for long.

And here I am, stuck in the middle again.  The biologics work for me.  I’m hitting three weeks between as of today again (looking forward to having to work from home next Wednesday because of my infusion).  I’ve signed up for December’s Santa Hustle and I’m looking forward to walking that half marathon.  I fully believe that, if we don’t have a foot of snow to ‘run’ through it will be a better race than the Presque Isle half a couple weeks ago.  Warm and humid do me in.  My fingers are all still parallel.  My aches are still mostly tolerable.  I’m exhausted by the end of the week, sometimes by the end of the day, but I try hard to remember to save spoons whenever I can.

No, cold does not irritate my RA.  Being looked at and groused at because I know my limits and I need to make alterations (“but you do half marathons”) when I need to irritates me way more than the weather ever irritates my RA.

So, yeah

Don’t let people pigeon hole you. Don’t take shit from anyone and be gentle with yourself.

Love and Light
April
August 3, 2016