I open my eyes in the morning and they immediately burn like I've been staring into the sun for hours.
I wish I'd taken Dr. Dana's (The eye guru's) advice and put a hot compress on my eyes twice daily for ten minutes, but do you know how long ten minutes seems when all you're doing is lying down, eyes closed, with a warm pack covering them? And the warm pack never stays warm.
I wish I'd put the $12 for 3 oz. systayne eye drops into my eyes six times daily, but even with spending the cash and strategically placing the bottles on my nightstand, end tables, kitchen island, and purse six times daily is still a lot.
I wish I had kept taking the flax seed supplements even though they take up to a year to work, and even after a year of taking it, they had done nothing for my eyes.
It's going to be on to Plan C for my eyes, the primary site of attack for my graft vs. host disease.
Apparently, Twenty mg of prednisone is the official dose where the side effects of the medication started to wane.
It's also the dosage where the symptoms of my graft vs. host disease have started to present themselves, AGAIN.
See the image to the right shows. It GVHD of the eye in the first picture and a cured eye in the second. There is a cure that comes at a price of over $300 a month. I don't know if that is for life or for a fixed period.
The pain becomes so severe I'm ready to pay it.
With steroids, it was easy to trick myself into thinking I had a long term cure for my disease. Every problem associated with GVHD disappeared within a matter of days, but then those symptoms were replaced with another teratogenic (therapy induced) disease: Cushing's from the high dose of prednisone.
My weepy burning eyes were exchanged for an insatiable hunger and sugar cravings that had me packing away a dozen cookies in a sitting.
The frothy wheeze of my lungs and gasping for breath was replaced by a round fluid filled moon face that stretched my skin to the limit and had my hall mark dimple flattened
The ulcers in my mouth causing pain so bad even my teeth hurt resolved only to have hair appear on my outer cheeks and upper lip.
Fatigue to the point of exhaustion that caused me to spend day after day on the couch was taken over by an anxious mania that had me up all hours trying to do four grandiose projects at once because of the obsessive need to do everything with a sense of urgency only felt before when I was actually facing the possibility of death.
How is that for exchanging one bad option for the other?
Now, I have minimal symptoms from both the disease and the drug.
I would never replace the time and renewed love of life the medication gave me, even if it did come with 40 extra pounds and facial hair.
I just hope I don't end up a bearded fat lady with wheezy frothy lungs and ulcers in my mouth.
I'm getting closer to the point in treatment where this is a possibility.
I'm getting to the point where we'll see if leaving steroids is even an option.
It's a scary point.
It's a scary day.
Today I meet with my heme team to get my PET results. It's my first PET in months.