Relapsing Polychondritis
Ā Ā Ā I must find My Courage, My Strength & most importantly: My Voice.I need to break down these walls, and since my time is not limitless, today I embark on a journey of vulnerability, transparency & bravery. Ā Ā Ā Iāve been diagnosed with Relapsing Polychondritis, an extremely rare & progressive autoimmune disease that attacks cartilage and other connective tissues. It came along with Scleritis, Sjogrens, an unknown stomach disorder & numerous other alien colonies. It was these disorders,with their myriad of manifestations, that made diagnosis so elusive.
Ā Ā Unfortunately, those undiagnosed years caused a lot of damage, and in the past year, itās progression has sped up. But these new symptoms, my own research & ER visits made for a strange blessing. It got me into Stanford where I finally found the Mothership of validation. Iām not crazy! It has a name! However my relief was short lived. Ā Ā Ā Itās taken a few months to educate myself on the diseaseās processā. To learn what it means for my future, my body & my interpersonal relationships. Unfortunately, since itās so rare, thereās little info out there.
Ā Ā Ā Ā Luckily, I did find ONE inspiring soul* bravely sharing her turbulent path. Thatās when I realized that I need to be documenting my journey, free from filters. I have to offer up my struggle, both physically & emotionally, Ā as a willing a guinea pig to learn from. Bluntly. Unapologetically. I should be helping to educate & spread awareness. Perhaps far enough to help someone, anyone, understand what their body is doing. And since most doctors donāt even know what Relapsing Polychondritis is, perhaps I can help educate more people in the medical community.
Ā Ā Ā Ā My vision is in steady decline. My ears & nose are starting to deform. My hearing is dampening. I suffer multiple skin rashes, mouth/tooth issues & vascular complications. Iāve wicked chest pain, boney growths, hot flashes & near constant headaches. I choke on food/drink/spit often & vomit in my sleep; Both signs of tracheal & bronchial tree complications. Plus, my heart, lungs & vocal chords, all show damage. Iām currently being treated with a chemotherapy drug & so far itās not working. My symptoms continue to worsen.
Ā Ā Ā Ā In fact, at Stanford this week, they ACTUALLY said,ā Weāve never seen anyone like you. Itās usually much more mild.ā Basically, Iām even more rare than the super rare disease I have. Shiiiiiiitttā¦Itās not looking good. Ā Ā I wanted so badly to regulate my social media image. I became selective with shared photos. I began to be purposely vague; Careful to keep the true nature of my struggles down to one highly edited moment of vulnerability per year.(on FB) I edited to avoid being a broken body spinninā like a broken record. Yet for all my careful editing, I STILL became the accused, the blamed. So, I withdrew from my own life.
Ā Ā Ā Ā Then, the past year hit with frightening new symptoms. With hesitant baby steps, I started sharing again by dipping my toe into IG & Tumblr. I found it WAY less scary to share with strangers, than to risk judgmental rejection by those I loved. Ā Ā Ā My damaged self esteem would declare,āAs soon as the painās under control; As soon as the rashes clear; As soon as I lose the weight; As soon as I get my teeth fixed; As soon as I get stronger; As soon as I get better.ā āTHEN Iāll be more social! But remember: Donāt share too much; Donāt let them see you cry. Ā Donāt overwhelm them. People leave when youāre honest.ā
Ā Ā Ā Ā This was how I saw my worth: Conditional. However, itās all wasted. Time stolen by insecurities, pride, hurt & miscommunication. Time Iāll never get back.Ā
Ā Ā Ā So, with the clock ticking loudly in my ear, I stand once again. Iāve no more use for conditional, one sided, fair-weather friends; the petty, the critical, the judgmental, or selfish. I refuse to quiet myself any further. I wonāt hide or apologize for my experience. Ā Ā Ā However, I still have a heart willing to love those of you who seek the same.
Ā Ā Ā This is My honesty, My strength, My Voice. Take me as I am, in all my glorious decay.Ā (⬠ļøphoto link)
*footnoteĀ Ā fromnursetopatient
















