Take 2

I am trying this again. I wanted to reflect on who Ron is now and struggled through my words last evening---then the page was stuck in the saving mode, and most of my entry was lost. Depressing.
Ron seems to be at a plateau in his recovery. I don't mean to sound like I've lost hope, but I don't feel like he is going to be able to recover further on a physical or mental level. GVHD is wicked, and again he is walking the tightrope between medications and his immune system attacking his body. To keep the immune system so repressed that it doesn't attack yourself there is no immunity for other invaders. So that is covered by numerous types of antibiotics, anti viral, and antifungal medication. Ron's steroids (prednisone) was tapered two weeks ago from 20 to 15 mg daily. He also has an infusion of steroids during each of our visits to AA for Photopheresis light therapy treatments.
Ron walks with a cane, exerts a lot of energy to get up steps, and is very fatigued after any physical activity. He sleeps 10-15 hours a day and is most bothered by the itching and skin changes on his back. He takes atarax and oxycodone to control the discomfort, and we apply sarna lotion several times a day. He cannot take Tylenol because it affects his liver.
Since the last taper, I had noticed some skin changes which the ECP nurse also noticed, so she felt the PA should see him. Now he is also using a steroid cream on a new area of outbreak, but nothing else was changed, and hopefully with the accumulative effect of the treatments and steroid infusion, it will be controlled. If not, his prednisone will be increased in two weeks. The tightrope.
Ron's persona is very different than before the transplant. He truly doesn't seem to comprehend the changes, or the oddities in his behavior. In many ways he is still Ron; he is still my valentine.