Friday Update

Dear Friends,
I keep thinking I’ll wake up and this will be over. Yesterday I had a relatively pain free day until evening. My eyes aren’t working right yet. We know its some kind of response to an allergy (I’ve never had allergies) but we are working out the details of what. A big discovery was Wednesday night when I stayed in the living room all evening after the day at doctors, hospital and the specialist and for 4=6 hours was relatively pain free…entered my bedroom again and it went nuts with swelling and pain in 3 minutes. Now for 7 days I had been retreating to my bedroom to rest with eyes swollen mostly shut all week….so apparently I kept returning to the source of the allergan. I cannot even wear clothes from my closet after washing them, they still cause a major response within minutes after washing….its the strangest thing.
Two days out now, my swelling is down and blinking pain is ending….but this morning I woke up with the stage of not tolerating any light again. Dark room, low level laptop and then this will be seriously over in 10 to 20 minutes for more hours. TV light hurts, window light hurts…then like magic, for a few hours it won’t….its not predictable… sometimes I can tolerate light from the laptop on dim, other times no light at all this morning….
The doctors have ruled out tumor, cancer, aneurysm, but they know something has destroyed 30-40% of the layers of my cornea, that my eye is severly abrased, and we don’t know why. They are thinking extreme dry eye that eventually even blinking was sloughing off my cornea surfaces by blinking. I have a high tolerance to pain so they think perhaps I didnt know it was happening for weeks until my body absolutely could not tolerate it anymore, so it may have been going on for days before it got to this level.
Can you say 2 x 4 method of changing everything in my life? Everything you take for granted is gone as far as seeing goes….Think about not seeing for 5 minutes. You can’t read, you can’t drive, you can’t anything for a little while if moving, blinking causes blinding pain again. Drops every 45 minutes, gels in at night to moisture the cornea…steroids to slow down swelling. The cornea specialist says no quick fixes 16-19 weeks and then we’ll see. ugh. This is not fun.
I have speak to read and other programs which will “read aloud” to me, so I am thankful for experience already using tools like these as a teacher of children who used them.
Its the weirdest space to go through this. You keep thinking “is this the new normal or am I missing something ” like realizing it gets worse in my bedroom. Mold from the antique furniture we moved in 30 days ago? New makeup or hairspray? I just never had allergy responses before now everything is irritating.
We won’t even talk about what this does to my work requirements which is almost 100% visual! Or how seeing 7 doctors in as many days hits your budget even with insurance….or how your husband in another state for the week in the middle of the storm leaves you pretty darn helpless…you can’t drive, you can’t go to the grocery store, you can’t even go outside to pick up mail. Chase was kind enough to pick me up from the hospital after our church was kind enough to take me to the last appointment….and then as you’re dropped off, you can’t see the walls, signs, or doors to go to….and you look normal, so folks assume you are, you run into chairs, coke machines, and miss elevators, because you can’t see them. You leave the appointment and know you need to go down , but was it one floor or two, you’re alone and you’re really aware of it. I’m not shy but there was no one in the halls, no one to ask for help….very humbling.
We’re 7 days in now and I am figuring out that laundry can be started, eggs can be scrambled, and of course Madison is superb help. When I have enough vision I am looking and doing what I can. I have no constrainsts for seeing, if I can see they say to use good judgement but do what I can do.
You just don’t know what hits next. Last night I looked almost normal, no more bloodshot red eyes and swollen eyes, cloudy vision in one eye, none really in the other, but this morning both eyes back to red and swollen….light sensitive extreme and somehow back to uncomfortable, but not the blinking level of pain (where even blinking hurts).
I finally crashed and sent a child to buy fried chicken box, a rotisserre one and some easy foods after 5 days of our freezer was empty and I just couldn’t handle cooking….do you know just how much it take to keep our 3 fed and clothed? I am slacking terribly keeping it up.
Meanwhile I am trusting that things will improve, trying to figure out the lesson in this, appreciating that I have not lived through this my whole life and that this too will pass we think. I am thankful for phone calls, suggestions, and kindness of others who have taken up my slack and helped. I simply don’t know how to tell you what this is like, but God is God and we are not and this will be figured out. Les flies in tonight thank goodness and hopefully between us we’ll figure out what the doctors can’t…..what is in my environment at home that is in my room.

hugs
Sweetie