Burning Balls of Fire...

Good Evening Dear Community

I know it has been a little while since the last update. I have been contemplating what to write.
But mostly it feels like I have to giant balls of fire in my eye sockets instead of perfect happy moist eyes. Hence the challenge of writing sometimes.

And I guess to tell the truth I’ve been moving from being mopey, to fired up, to tired, to weepy, to frustrated, to all out exhausted and spun out a bit in head.

This is GVHD and it is letting me know it is here and doing what it is Supposed to be doing.

Ouchie!!!!!

I never would have realized how uncomfortable having this kind of eye trouble would be like
Eyes are good and precious and they should be moist.

The Graft vs Host is getting better in that my skin is clearing, counts are near normal ( except for the tricks the Prednisone plays on some of them).

But man oh man it feels global warming is going on in my eye sockets. It’s a funny thing because things aren’t as blurry, but the eyes are now dry. So it IS improving.

So reading, computer, even TV at times strains the eyes. Sun and generally being outside and out about for too long causes them to dry right up and burn. I’m dripping artificial tears into them about every 15 to 30 minutes and putting cold compresses on them to cool the flame.

The Prednisone is playing with my moods and my need for food. I want eat about every 2 hours.
The prednisone (along with prayers, positive thoughts and Divine interaction and cooperation) is correcting everything. So though I complain...I feel better then I did last week. And I know I feel better next week.

Thursday I’m getting this "simple" procedure done where the eye doc, a sweet Man Dr. Naseri, will put tiny plugs in the tear ducts the drain the tears, and will open up the ones the produce the tears. So we are creating little damns in my eyes. Cool…and can we do it now…this very minute!?

The day is Thursday.

The prednisone (a steroid) puts me in full on project mode, well my mind at least and the eye thing exhausts me and forces me to nap.

Gosh this is a healing that occurs over the arc of time and sometimes I wanna break free, and just be one of those people walking around, hair blown in the wind, seemingly with not a care in the world.

But this is the new normal and I am committed to my life and my healing. And I am very good at keeping my commitments

OK no more complaints

This past weekend, I went away with 10 of my girlfriends. We rented a house on Bodega Bay, CA. We cooked tons of food, walked a little but mostly just hung out and talked, watched the Bay in the distant and watched a big family of dear graze outside the window. Napped. I was loved and nurtured and cared for and told to stop when I was over doing it. I came home to my sweet husband, blessed out and rested.

On Saturday, armed with my meds, 2 boxes of eye drops and my sweet Noah, we are off to Detroit ( actually Eastpointe, MI) to see my parents, family and celebrate my Grandmas 89 b-day. We will be there from Saturday the 19 till Wed 23rd. Yippie I get to leave my quadrant and be somewhere. Same routine but different surroundings

How lucky are we to see my family. And to also see and thank all their friends in their community and at their Church.

So this week is all about extreme amounts of rest, following all the rules for Self care, no overdoing it, big prayers for wetter eyes, and my heart-felt faith that every day things are improving.

Take the clue from your wise body that when its time to rest, rest…our minds are too pushy sometimes and they often misguide us.

If it’s raining take a nap or curl up with a book, if it’s sunny go on a nice casual walk after dinner.

Have a good wet cry.

Know I always feel your love and it means so much

I’m in Remission

My body is loving me and doing this mysterious thing to deepen my healing.

I’m all for it.

Have a beautiful evening

Namaste
Victoria