#relapsingpolychondritis

[sacredjinx]

"An invisible disease | Charis Hill | TEDxSacramentoSalon"

#relapsingpolychondritis #raredisease #chronicillness #chronicpain #autoimmunedisease #charishill #ankylosing spondylitis #invisibledisease #isolation #degenerativediscdisease #degenerativearthritis #spinalfusion #Youtube

[sacredjinx]

Isolation. Depression. Burning. Pinz. Needles. Fumbles. Sight. Nausea. Loneliness. Bilateral. Encompassing. Pain. So. Much. Pain. Skull. Eye. Ear. Neck. Back. Knee. Hip. Ankle. Shoulder. Wrist. Phelangies. Swelling. Foot. Trache. Collapse. Dagger. Choke. Psyche. Fear. Caged.

I'm no longer winning; now just the Grim Reaper"s pin cushion.

(Pin & tee by good friend #skeletaldropkick)

#relapsingpolychondritis #raredisease #chronicillness #chronicpain #autoimmunedisease #degenerativearthritis #degenerativediscdisease #spinalfusion #isolation #osteoarthritis #scleritis #uveitis #dysphagia #trigeminalneuralgia #occipitalneuralgia #migraine #tracheobronchomalacia #ards #tachycardia #skeletaldropkick

[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

#raredisease #relapsingpolychondritis #chronicpain #autoimmunedisease #suffersilently #suffer silently #autoimmune disease #chronicillness

[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.

#besthusbandever #earcuff #relapsingpolychondritis

[sacredjinx]

All day today. Small joints. Large joints. So many joints. Mr. Fumbles fumbles, burns & aches. Skull getting kicked from the inside. Back & legs irritated. 2 am, I lay down. Left hip angers, ear protests pressure. Roll to the right, settle in. Right shoulder bitching, ribcage flexing, rejecting. Tears fall a moment or two. Sit up, flood breaks free. Crying wakes Wade & the cats; serves up a full blown migraine. Brew coffee, cry more, take meds. Try not to give up

#relapsingpolychondritis #raredisease #autoimmunedisease #chronicpain #mentalhealth #besthusbandever #painsomnia

[sacredjinx]

#relapsingpolychondritis #raredisease #chronicpain #autoimmunedisease #chronic illness #Youtube #race for rp #nhs #penn

[sacredjinx]

Fragments from a broken mind. Trapped in a broken body.

Level 9. Yesterday. Another day. 1 cane, 2 canes. ER worthy pain. Hang myself, from my husband's neck; to the toilet we go. Level 10. Ice it. Tears fall. Heat it. Legs up. Wedge down. Salon-Pas it. Ankle screams. Back burns. Neck shoots. Joints stiffen. I suffer. Fear. Avoidance. I'm Uptight. Tied-up, foot to knee. Breathe. Body destruction. Insensitive other. Hide it. I'm Wounded. Repress it. Rx up. Pain managed. Too far. Too much. It's not real. Brain cracks. I Fragment. It's not at all okay...

#relapsingpolychondritis #besthusbandever #raredisease #chronicpain #chronic illness #mentalhealth #autoimmunedisease #darkness

[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!

#oldfriends #minivacation #innatrockawaybeach #Pacifica #skeletaldropkick #flareup #relapsingpolychondritis #progressiveautoimmunedisease #tracheomalacia #dysphagia

[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.

#silenced #chronicillness #raredisease #autoimmunedisease #relapsingpolychondritis #chronicallymisunderstood

[sacredjinx]

She used to be mine...

#broken #raredisease #relapsingpolychondritis #autoimmunedisease #loneliness #sheusedtobemine #sara bareilles #spoonietoons #spoontherory #spoonie

[sacredjinx]

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

#chronicallyrawesome #neondreams #notdeadyet #medicatedforyourprotection #medup #nevergrowold #esketamine #adorehaircolor #hairdye #coloredhair #bennye #raredisease #relapsingpolychondritis #chronicpain #autoimmunedisease

[sacredjinx]

There's a difference between being angry & being hurt. So I'll try to be more clear: I. Am. Hurt. Down to the very core of my heart.

But I never attacked or even talked to anyone. Not in person. Not in an email. Not a phone call. I didn't want to make "them" all feel badly because they struggle to handle my illness. I didn't want to be so cruel as to force others to speak when they couldn't find their words. Instead, I tried to quietly rise above, removing my connection to those who cause me pain; an act of personal kindness; a move of self preservation.

I vent here, in a blog no one reads. I learned the unfortunate lesson that if I try to turn to anyone outside the SWADE Citadel, I am judged.

I'm laying here, the full brunt of a wicked flare ripping at my body so bad that I cannot sleep. At all. And all I kept thinking was:

Why do you keep fighting? There's nothing to look forward to. No travel. No one who wants to take on adventures with me. No one to talk to except my husband who's stretched dangerously thin. I've just a trickle of friendships left that I access maybe 2-3 times a year, if I'm lucky. There's no family left. I haven't any purpose. None. I don't contribute to anything anymore. I lay here, broken and puking; pain & discomfort my constant companions. A rare disease guinnea pig. There is no more life or light left in me. I am pointless.

I don't want to be alive anymore.

#raredisease #relapsingpolychondritis #chronicillness #chronicpain #autoimmunedisease #depression #pointlessness #igiveup

[sacredjinx]

10/21/19

These headaches have GOT TO STOP! Instead they're morphing!  Multiple L sided migraines several times a day/week, to daily mixes of those & the much worse ones I playfully named Teri Teratomas. To rare regular migraines & daily hard to control Teri's. To bilateral daily shifts between L Teri & R Teri. Plus added facial skin sensitivity, burning & bruising, as well as bilateral eyeball pain. It feels like my brain is forcing it's way out: Severe stiff necks, eye globes feeling as though they'll burst, my skull cracking from outward pressure. My eye rolling/drooping seem to be related as well; or that the headaches exacerbate them. They're there each time I wake now. It doesn't matter if it's a short nap, or a nights sleep. It's really starting to break me down. They're exhausting, horrendously painful (some of the worst pain ever felt) and life outside of them comes to a complete stop. Ice, caffeine, antiinflammatories, muscle relaxers, heat, stretching and pain management struggle against their strength. I said God Damn! Please gimme a break. I'm tired of going to sleep scared of waking.

Ring by http://www.kimericlilot.com/home/

#occipitalneuralgia #trigeminalneuralgia #chronicmigraines #retinopathy #opticneuritis #diplopia #chronicillness #chronicpain #relapsingpolychondritis #raredisease #autoimmunedisease #progressiveillness #Stanford #kimericlilot

[sacredjinx]

The Body May Be In Chaos, But The Mind Is Calm!

I had the most amazing day yesterday! My beloved friend Christine took me out for a few hours. Silliness, creepy goods, coffee, and connectivity reigned supreme. It was a much needed break from my day to day realities. Together we explored every square inch of the Spirit Halloween Store and had an overdue coffee talk. I have 3 new kitchen towels, a thigh high pair of rainbow tube socks & some striped suspenders. Best of all, I have a lighter soul...

I'm so thankful for you Christine, you're a tried & true blessing in my life. ♥️😻♥️

#truefriends #spooniesdayout #spirithalloween #adultswhostillplay #bestgalpals #connectivity #hatebeinghousebound #rarediseasesucks #chronicillness #chronicpain #relapsingpolychondritis

[sacredjinx]

Once upon a time…

There was a very efficient retail manager. She took great pride in a hard days work, sturdy time management & effectively leading a team. There was one employee she'd been exceptionally proud of; he was easy to train, brought great energy & was a joy to watch advance. One day, it was time for him to move on. As she watched, he tearfully hugged each teammate goodbye. Heading toward the door, he turned & graciously waved farewell. She exclaimed, " What?! No hug for me?" To this he replied, "Oh, I'm sorry. You've never seemed the huggable type." She instantly burst into tears as he came running to embrace her. He felt terrible & she did not want that for him. She took his face, kissed his cheek and said simply, "It's ok my Tropical Fruit. Go forth & be fabulous!"

Later that night she took a deep look inward. She'd had no idea that this was how she was viewed. You see, there'd been many tragic moments in her young life. Things that required more strength than she thought she had; yet she survived & thrived. She just hadn't noticed that in order to protect herself, she'd employed an armor; one that made her more removed from her emotions than she'd intended. (little did she know, she was just training for a future war) She vowed that very night never again to be seen as cold & distant. And she wasn't…

... until now. Life had been serving blow after blow, hand over fist. She tried to keep rolling with the punches, but they were vicious & unrelenting. After an especially brutal sequence, she felt something break. Under the pressure, silence condemned her joyous heart; reality splitting fissures destroyed her hopeful nature; and judgement struck the final blow, effectively cooling her fiery zest for life. 

She finds herself in darkness once again. At once apathetic, vague, unhuggable...

#chronicillness #chronicpain #relapsingpolychondritis #raredisease #depression #apathy #mentalhealth #thisbrokenbody #spoonie #shawncoss #chronophobia

[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)

#raredisease #relapsingpolychondritis #chronicillness #chronicpain #autoimmunedisease #spoonie #spoontheory #invisibleillness #mentalhealth #sjogrens #sepsissurvivor #coma #ptsd #toothache