Slowly Slowly the GVHD takes its time...

Hello Lovely and Loving Community…

I don’t know when the last time I wrote but it feels like its time for another update.

I hate to send emails where I am always complaining. But darn it all this has been a challenging process these past 2 months or so
I know it could be worst. and I really have very minor GVHD.
But blah!!!! Blah!! Blah!!

But what I find I have been really fighting with are the meds that are either making me hyper or sedating me. It is a struggle and surrender has not been easy. I often don’t know what emotions are mine or from the meds. I guess they are all mine anyway.

I wake up at 6 AM full speed ahead. I have tried to master this by either moving very slowly in the morning, enjoying the experience of the first sunrise, doing some yoga, going for my 2 mile walk, or tiring to stay in bed to fall back asleep. It is always different.
But surrender I reckon is the key.
These meds I’m given are a gift, just like my healing and the prayers, so in the same heartfelt way I practice a way to welcome them and what they are offering me.

I do talk with them tho.....I am asking to take it easy on me and do your work quickly and it feels like we are working together.

I’m down to 15ml on the pred and 1 less Xanax but still by 4pm I am sooo soo tired, unless I try to take a nap I can barely keep my eyes open.

Its an experiment in progress. I’ve only been able to take a couple of naps
And excepting that, nope this is not the way I want to feel, Can I change it right now, not really, so why fight it. Lay down darn it all, nothing has to get down right now. Close your eyes Victoria, why is that so hard.

My Birthday is Sunday June 24. Noah and I leave for a peaceful nature filled weekend. I so need it. He does too he has been working his butt off. I have been praying for peaceful interaction between us, slowing way down, very low tech and just a connection with beauty of that area of the state and its beauty.

I will be loaded up with 70SPF sunscreen, my huge sunglasses, and a big brim hat, even long sleeves if I have to. I must keep my skin totally protected, especially while my face is healing from the rash.

It is but very slowly.

I went to the dermatologists today and got a stronger cream and a biopsy ( I have no idea why, I guess to see if it is getting worse or better, to have a base line). There were 3 docs in the room and I have not one idea what they were talking about only bits and pieces
I told them to call my doctor so he can lay it out for me.

Its not bad they are just doing their doctor thing which I appreciate. They just want to understand where the GVHD is

The eyes are nearly 100% and I am only putting fake tears in about 1x a hour or less. This is good. My mouth seems to be getting better especially the past couple of days.

So slowly slowly we move thru this healing.

Well it is nearly 11PM here and I have pills to take, stuff to gargle with, eye drops to put in, and pills to help be sleep to take.

I’ll write more after the trip to Lassen.
Have a beautiful weekend.
Lots and lots and lots of prayers back to each and everyone of you.

Please remember my friend Liza Matlack and Andria Hakker, who are still trying to get into Remission after their bone Marrow transplants.

Love love love and Huge Gratefulness

Oh yes and Happy Summer!!!!

Namaste
Victoria