#relapsingpolychondritis

[sacredjinx]

Suffer silently, you make me uncomfortable. Cry quietly, you make others uncomfortable. Struggle alone, we can't face our own morality or mortality. Lose your perspective, your voice, your humor, we've no use for it.

Let your illness strip you of life, symptom by symptom. Allow your disease to wound you, progressively. Watch as your family, your friends, your acquaintances turn their backs to you. Replace joy with fear. Release your independence. Don a mask, build a thicker skin, become a faceless husk.

Surely your husband & mother can shoulder your burdens. Please, just quiet down...

https://youtu.be/cEz5il1Syhc

[sacredjinx]

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.

[sacredjinx]

View this post on Instagram

This is what it looks like when you FINALLY find pain management Rx's that ACTUALLY work!  #chronicallyrawesome#neondreams#notdeadyet#medicatedforyourprotection#medup#nevergrowold#esketamine#adorehaircolor#hairdye#coloredhair#bennye#raredisease#relapsingpolychondritis#chronicpain#autoimmunedisease# https://www.instagram.com/p/B4DrBR5hIP5/?igshid=1rnbc4xje526g

[sacredjinx]

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!

[sacredjinx]

12/24/19

"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.

[sacredjinx]

M'toof! Daaaaaannngg. I'm on the Swift path to Toofless Hag! So, last week this crown fell out triggering an '04 PTSD flashback that required ma's special ways to calm. How you ask? Well starting in '03 my teef started falling apart. (unfortunate side effect of some autoimmune processes) It occurred along with my severe weight loss, increased symptomology & sense of foreboding. Friends began giving me dream trips as fear lingered in their eyes. Not only did I feel it but now they could see it too. One evening I overheard my mom on the phone yelling. "Joe! I need help here! She's dying right in front of me! She smells of death!"

There was something so awful about hearing her words. Almost like if my mom didn't acknowledge the severity, the more I could deny it too. Then the Rx's used to save my life during coma killed my teeth even more, and without insurance, the only option I was given was to pull them all. Luckily my dad felt generous post coma & paid his dentist to save most of 'em.

Fast forward to my crown popping out & I was instantly transported to the emotional fear I suffered in '04. After ma calmed me, she looked & said the base was still intact, no big hole. Phew! Annnnddd then I lost another crown the next day. Aaaaannndd 3 days later the base of the 1st cracked & half dropped out!

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)

[sacredjinx]

Now imma Brag: I'm proud of m’self that for the majority of the days, I remain positive. 75% has been an agreed upon percentage by my informal study of ma, Wade, inlaws & my Docs! I'd say that number's a Win! When the act of giving up lurks in the shadows of my mind, I'm using creativity, funny videos, kids movies, inspirational dancers & offering what little support I can to others, I keep fighting, moving & most importantly, I keep laughing! Dunno how many others could keep that up for 22 years! For that fact alone, I officially dub m'self…RAD!

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

[sacredjinx]

Just call me Jack!