Category Archives: Sjögren’s Syndrome

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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Starting a New Support Group

 

So, Kim Nolte and I started a new support group on Facebook.  Living Life Large with Rheumatoid Arthritis.

The idea that winded its way through my brain, as I walked home from Giant Eagle on Thanksgiving morning (yay needing milk), was… most groups seem to spend a lot of time “one upping” each other on how bad their RA is, how bad their pain is, how much they can’t do.  If anyone (including my boss) has noticed anything about me, it’s that I try to do as much as I can do despite my RA.

This, apparently, is a good thing.  This… apparently… is motivational to people.  So, we were talking, and we decided that motivational is a good thing.  So we started a group for just that purpose.  People with RA, to lift each other up, to provide useful dialog.  Yeah, some kvetching and bitching, because, let’s face it, RA kind of sucks even if you are determined to keep going.

The ground rules… no bullying… not dumping on people for their religious beliefs… no dumping on people for speaking a different language (they have really cool tools to help translate different languages… google translate got me through my Brazil project at work, it can freaking close the RA gap between people, too).  RA bullies us enough, we don’t need people bullying each other. I’m a  DBA (literally, database administrator… but philosophically(( LONG long story)) dat bitch April) and I will not hesitate to delete someone for behavior unbecoming the group.

SO… if you are on Facebook and you have RA (not to bully, or shun anyone here… Fibro, Sjogrens… any of the wonderful flavors of pain we deal with) and you want to have some support and motivation… come join us.  I have a really hard time with being in your face with self promotion, but I really think this is something worth being outside your comfort zone with… COME ON DOWN… and join us.

It’s very disheartening to see 2 members every morning…

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WHY ME!?!?!?!?

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Sometimes it gets very easy to fall into the  “Why Me”s. Why do I have this <insert what this is>? Why do my kids have to fight <whatever it is they are fighting>? What did I/We/You do to deserve this? … Continue reading

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30 Day Chronic Illness Challenge… Day 1… My Introduction

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So… I did my RA introduction a few days ago. It’s been a REALLY long week this week and I’m feeling it this morning… so I thought I would sit down, slow down, and catch up with myself. So here … Continue reading

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The Value in Nothing

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It’s late again (for me).  Later than it should be.  Later than it could be.  And this morning I just don’t care.  I am sitting on the front porch.  My deer friend Eloise (I’ve named her Eloise… the one that … 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

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.

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Words…

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

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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I’ve been SO Stupid

be forewarned… this is a rant. I posted “my story” with my numbers today on facebook.  I have some amazingly supportive friends.  I didn’t actually anticipate the push back I got on my story.  BUT I was surprised. I posted … Continue reading