I have always been an artist. I’ve dabbled in a bit of every type of media, mostly painting, photography, and fibers. I did art every day in some way before I got diagnosed with Behcet’s disease, an extremely rare autoimmune disease, and granulomatosis with polyangiitis, 5 years ago.
Diagnosis was super scary. I was told I’d have to undergo chemo for the rest of my life and my life as I knew it stopped on a dime and turned completely upside down before rapidly swinging in such a seasick motion that I didn’t know if I’d ever find balance again.
Through all of that, I never lost my zest for life, but my creativity was gone.
I did crochet that first winter, I was shut in and living on heating pads, but I didn’t have that artistic drive that I did before. I didn’t know why or what had happened. I ended up talking to my doctor and he said it is a rare side effect of chemo that it can sometimes alter your brain chemistry and that could have played a part in it. Whatever it was, it was a huge part of my mourning process, mourning the life that I had to let go and it was sad.
5 years later it’s like something opened up and my creativity is running wild again. I feel like I have part of my life back. My future is unknown, the chemo that was “saving” my life, is now killing me and I’m one of only 7 known cases in the world where my medicine is causing life-threatening gangrenosum. These new developments also include a “can’t rule it out” diagnosis of Behcet’s Disease.
My next step in treatment is still questionable, but I feel like I can always let out that frustration by working on my art.
– Josie K. B, Wegener’s Granulomatosis a.k.a. Granulomatosis with Polyangiitis, Behcet’s Disease
