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. I’ve 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.
Unfortunately, those undiagnosed years caused a lot of damage, and in the past year, it’s 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. I’m not crazy! It has a name! However my relief was short lived. It’s taken a few months to educate myself on the disease’s process’. To learn what it means for my future, my body & my interpersonal relationships. Unfortunately, since it’s so rare, there’s little info out there.
Luckily, I did find ONE inspiring soul* bravely sharing her turbulent path. That’s when I realized that I need to be documenting my journey, free from filters. I have to offer up my struggle, both physically & emotionally, 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 don’t even know what Relapsing Polychondritis is, perhaps I can help educate more people in the medical community.
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. I’ve 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. I’m currently being treated with a chemotherapy drug & so far it’s not working. My symptoms continue to worsen.
In fact, at Stanford this week, they ACTUALLY said,” We’ve never seen anyone like you. It’s usually much more mild.” Basically, I’m even more rare than the super rare disease I have. Shiiiiiiittt…It’s not looking good. 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 spinnin’ like a broken record. Yet for all my careful editing, I STILL became the accused, the blamed. So, I withdrew from my own life.
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. My damaged self esteem would declare,”As soon as the pain’s 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.” “THEN I’ll be more social! But remember: Don’t share too much; Don’t let them see you cry. Don’t overwhelm them. People leave when you’re honest.”
This was how I saw my worth: Conditional. However, it’s all wasted. Time stolen by insecurities, pride, hurt & miscommunication. Time I’ll never get back.
So, with the clock ticking loudly in my ear, I stand once again. I’ve 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 won’t hide or apologize for my experience. However, I still have a heart willing to love those of you who seek the same.
This is My honesty, My strength, My Voice. Take me as I am, in all my glorious decay. (⬅️photo link)
*footnote fromnursetopatient
