Hi Friends,
So, many of you who know me personally know that i have a chronic inflammatory eye condition called
Uveitis caused by an auto-immune disease called
Sarcoidosis; and that i'm receiving chemotherapy to treat it. Yesterday, after getting hooked up to the I.V. and scooting it around the office like a little future puppy on skates from one test to another for three hours, i was told that i was having a bad reaction to the medicine and the plug was pulled.
This is the fourth type of chemotherapy drug i've been on in a year, and one that has worked the best with little complications. To have the plug suddenly pulled (albeit gently), was quite a disappointment. I felt really alone in the moment; even though i was with the amazing infusion nurse, Laura, and a woman who travels from Spain to see the same
doctor i drive to. I guess i would have felt less alone, if the woman from Spain spoke English, or if i spoke Spanish, or if i wasn't so afraid of scaring her with the chubby tears that were welling up in my eyes.
Although i never intended to share my story in such a public forum, i'm doing it to share my experience: the ups, the downs, and the life that gets lived in between. Because really... that's the best part, the "in between." And though i've read a lot about treatments and a whole bunch more about the pain and suffering that can come with them, not much is said about the life that gets to be lived in between: the life worth living. And me personally? That's what i like to hear about.
So, come back and visit. If you know anyone that going through something similar, let them know that there are others out there and show them this. Maybe if they know they're not alone they can have longer in between moments. Because it's what all of us with auto-immune stuff want: longer moments in between the sucky ones. Maybe knowing how someone else is finding those moments can make it easier figure out how to have them on your own.