1 of 50,000

It is a loose estimate, but that is the most updated number representative of the amount of people affected with OI in North America. 50,000 out of 366,600,964.

Over the past few posts we’ve veered away from my more immediate situation, mostly because it’s been a terrible phase of limbo with not much to report. My infection, which I’ve since learnt has a name; Peri-Implantitis *google at your own risk-super gross* isn’t any better. I brought myself to a walk in clinic as a last resort in between appointments because I knew something wasn’t right. My sinuses started aching, my glands all down my neck were starting to swell, and every time I moved my mouth my ears would hurt.

Pretty funny experience with the walk in Doctor. He did his best. He did the “Mhmm, Mhmm, Ah, Yes, Mhmm” when I tried to quickly explain why I was there asking for antibiotics. He kept asking me “what tooth was infected?” and after repeatedly reminding him there were no teeth-he insisted he take a look “for curiosity’s sake”. Very timidly he said, “Ah yes, that looks very infected and tender” and I shortly left with a prescription for Amoxicillin.

I’ve been on this round of antibiotics for 6 days, 3 times daily, and there truly isn’t any improvement. Oh, and while we’re counting-this is day 29 without teeth. *said with irritability*

It’s frustrating to feel like I’m doing everything I can to possibly speed up the process, and yet see zero improvement. Waiting for CT results, waiting for the surgeon to call me so we can put a plan together. So much waiting. I feel like time is standing still, and I am just so anxious and eager to know what’s ahead.

Sometimes when I’m panicking my fiancé reminds me that I have a tendency to hyper focus on the probable worst case scenario. It is valued feedback, and he’s right. I’m definitely trying to manifest more positively. However, he knows, and I know, that when you’ve been faced with worst case scenarios frequently in your life, you sorta just begin to expect them around every corner. So, that’s where I’m at right now. Positively trying to manifest good news, while also preparing for the worst? That sounds like an oxymoron.

I can’t stop thinking about what within me has changed, and how I got to this place of responsibly utilizing some of my coping skills right in the moment of action. Is this Emily unintentionally prioritizing mental health practises? Oh how I believed this day would never come. I cannot believe how good it has felt to share this so authentically. The response to the this blog is the fuel I didn’t know I needed to nurse the flame of healing within myself. OI has been largely suppressed within me. Fear maybe? Lack of self worth? Ignorance providing bliss? All of the above? Probably.

I remember this summer during a socially distanced hangout with my closest friends, we (naturally) got into one of our very not-so-casual conversations about life and deep personal reflection. They both identify as true perfectionists through and through, and I remember feeling so baffled by the fact that I did not feel this within myself in the slightest. It was that moment with two of my safest people; did I verbalize a thought I had always been too fearful to let outside of the safety of my mind. 

For me, there’s always been this grim timer running in the back of my mind on how much liveable life remains for me. It’s quite dark, but it’s the truth. I’ve felt this immense sense of urgency to live as much life as possible in the healthy years that remain for me. I’ve saved pennies to backpack through Europe, and driven across the United States with a punk band on tour. I left an unfulfilling and toxic work environment to go back to school at 27 to pursue my true creative love-makeup artistry. All of these seemingly impulsive, or irresponsible decisions to some, have been fundamental in prioritizing my mental health and living with a silent disability.

I want to ensure that no matter where I am in life, I can always rely on the fact that I did what felt right, and listened to my soul speak. Who’s to say that my timer will in fact run out before most? There truly is no gaurentee. What matters is that I know I can say confidently that I’ve loved deeply, forgiven quickly, and learnt from some huge mistakes made along the way. I have travelled outside of my comfort zone only to find growth and beauty there. I’ve seen parts of the world that have imprinted on me like no other. I’ve lived authentically, and shown kindness back to a world that at times, has been cruel to me. For these reasons, I thank OI. I’m not sure if I would have pushed so hard to prioritize my happiness, had I never feared a inevitabile deadline of losing it all.  

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