CGVHD: Skin Sclerosis

My body has a love hate relationship with my stem cell donor, and prednisone. The prednisone doesn’t seem to be doing it’s job this time around. After several months of 60mg a day, I feel some improvement in my mobility and range of motion. Appearance wise it is by far the worst I have experienced. The sunny summer months have done some damage. My skin is angry to say the least. It’s very hard to avoid the sun completely while trying to maintain a “normal” life. Currently taking 30mg a day and I would do anything to have my old skin back. The tightness and hardening skin around my torso is extremely uncomfortable but like everything else, manageable. I’m doing everything my specialists are suggesting with no fix it seems. I worry about how far this could progress, how it may affect other organs like my lungs, heart or liver. The amount of prescription medications I have been pumping through my body is terrifying. Many fairly new and recently approved by Health Canada. Who knows what the long term side effects may be.

When someone asks me how I’m feeling I usually say something along the lines of “I’m fine.” Because that is so much easier to say than what’s really going on. I’m bruising like a peach, my appetite is through the roof and I’m dependent on sleeping pills to fall asleep at night. I have days where my body feels more tired than usual. The cramping of my hands and feet has gotten less frequent, but still prevalent. I’m hoping eventually research can find something to cure or rather prevent this type of GVHD from happening post stem cell transplant. It has extended my life and given me 8 more years but at what cost. What is life if you can’t enjoy it to it’s fullest. Its difficult to love every aspect of your life while opportunities and experiences are limited.