#relapsingpolychondritis

My rad hubby made me this ear cuff, complete with a lil zombie him, a mini Athena & a mini Nyx on top. Isn't it wonderful?! RPC closed the piercings in one ear & this was his way to solve my offset jewelry holders. His thoughtful creativity never fails to impress me.

This past weekend I had a mini vaca in Pacifica with an old friend. We had a great big ADA compliant hotel room 1 block from the beach & my anxieties melted away with each crash of the waves. Though it had been years since hanging, Chris & I fell into the same ease of friendship that had always been there. It was great getting to know her family & exploring the little cove. Unfortunately, before we headed out there, I started having swallowing troubles. But I was determined to see this trip through & just tried to limit my food intake. Upon our return, I was expecting a flare & wasn't surprised when I started to wake choking on vomit since it always comes with swallowing issues. But then I choked hard on my dinner & vomited into my hands while I struggled to get air & unstick my trachea. I puked again & choked on that. Of all my symptoms, the tracheomalacia is the scariest. It's a bummer to pay such a price for pretending I'm normal for a couple of days. I wouldn't change it though, I'd rather have a reason to flare than to forever be at the mercy of this dang disease. Big thanks to Wade, Chris & Darren for helping make the trip a reality & filling my heart with joy!

"We get it. We know what you're going through. We know." I'm dumbstruck. I get that it's hard for some to face my illness, but really? Ghosting. Distancing. Ignoring. Denying. These are & have been commonplace since I announced my diagnosis. I have precious few confidants left. To hear such dismissal sucks. Especially when it comes from someone who has gone through something similar. But you had a supportive system in place. Support groups, family, women's/men's groups, co-workers. Rare & long standing chronic illness doesn't offer such things. Maybe you didn't realize how wide you could spread your struggles. Perhaps that's why you can so easily dismiss my experience. That's what those words say. You've read up on it & that's enough. You "get it", so please stop sharing. Don't you understand that such commentary robs me of my experience & invalidates my emotions? You've silenced my already filtered struggle. I wish I could make you understand how it sucks... but I'm too afraid to speak up. I don't want to lose you too.

Most dentists won't touch anyone while on immunosuppressants. So after fighting for months to get affordable Humera, I've had to put starting it on hold. Now we're desperately trying to find a dentist who will treat autoimmune diseases, especially mine. We were shocked to be denied by Stanford, but they are simply not equipped to handle such complications. I'm not very hopeful, so for now the hubby's cooking food fit for the elderly! I'm going to give it til next week to find a dentist or just decide to start my treatment again. Toofless Hag here I come! (5/21/19)

ps~ Inflammation closed my R ear piercing so been making ear cuffs/wraps; spikes & chains were for the IAMX show!

Just call me Jack!