Wednesday, February 15, 2017


Vigilance needs to be my new middle name.  But vigilance is exhausting.

I spent 12 hours swapping out hot, wet compresses on my eyes because they were so dry I couldn't bear the pain.  It felt as if the back of my eyelids were made of sandpaper.  I had used the new drops from the ophthalmologist, but I don't think they were better than the Systane Balance.  I put in drops each time I swapped out the compresses, but it was 12 hours before I felt as if I could bear my eyeballs once more.  SIGH.

I keep thinking about the eye doctor telling me that using the eye drops six times a day is closer to what my eyeballs needed.  How do I remember to do that?

I have to be vigilant about my feet.  When they feel numb, I know they are blue and are in danger of new chilblains.  The worst spot on my right foot turned black and then the skin sloughed off.  It was gross!  And hurt.  But that spot is better.  Now I have chilblains on my left foot.  SIGH.

With Sjogren's, I first developed the need to be vigilant about my skin.  It is now so dry that, when I pulled off my clothing, inside it is filled with small flakes.  And it hurts.  My arms and hands hurt, that is.  So, I am slathering on lotion, and some high-powered lotion at that, all the bloody time.  I especially have to do this after a shower.  If I am not careful about my hands, my skin starts to split and bleed.  SIGH.

The skin on my lips is the same.  I am having to put lip balm on them all the time now, me who was never much of a balmer.  Or lipstick wearer.  So, I am not in the habit of slathering stuff on my lips.  But, if I forget, they split open.  SIGH.  

My eyes have been getting worse and worse.  It is funny, in an odd sort of way, just how easy it is to get used to discomfort and pain.  Since I had optic neuritis, they hurt to move, but I am used to that.  When I am really tired, my eyes hurt, almost as if they are swollen.  It has gotten to the point that if I awake and my eyes still hurt, I will go back to sleep, waiting to get up until they no longer hurt.

Now, though, they constantly feel as if something is is in my eye.  Both of them.  Last night, though, it got worse and worse and worse until I was frightened.  Hence, the hot compresses, trying to keep the outside of my eyes moist whilst apply drops to the inside.  Hours and hours later, the pain level in my eyes dropped back down to manageable.

I need to be more vigilant about drinking water (that will help my eyes) and more vigilant about using those eye drops and using them more frequently.  It is my most fervent hope that the gel and the gel drops (I bought bought to be on the safe side) will help with the bad days and make this whole dry eye thing more bearable.

I am weary of the need for vigilance, though.  Not standing too long, resting enough, taking medication, drinking enough, getting enough sodium, slathering enough lotion, using enough eye drops, having enough frozen ice packs, etc.  It goes on and on and on.

I want to be well, to feel good.
Just for one day.

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