4 Years Ago

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I cannot believe I graduated high school 4 years ago.  Wow.  Feels like lifetimes ago & yet just yesterday in so many ways. Looking back on pictures always fills me with an almost-suffocating sense of nostalgia and…well…emotion, I guess. Not happiness or even sadness, per se, but an overwhelming feeling that I cannot quite seem to name.  Looking at this picture, I am taken right back to that day– I experience the memories with all of my senses– & I am left feeling hollow yet full to the brim, tears streaming down my cheeks & smiling all at the same time…

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I Donated My Hair!

Chopped off 14 inches of my hair to donate to make wigs for kids battling cancer!! My hair hasn’t been this short since I was 13. I didn’t realize how much hair weighs, especially hair as thick as mine…I feel so much lighter! This new style is gonna take a lot of getting used to, but I am very excited to be able to give my hair to such a good cause 🙂

Lucie Is Officially A Graduate!

Today Lucie officially graduated from NC State’s Poole College Of Management with a degree in Business Administration with a concentration in Finance! Not only did she finish such a difficult degree (with English as her second language), but she graduated Magna Cum Laude with a GPA of 3.6. So proud of her! Today was a very long day…Shannon and I did not sleep at all last night (or the night before, actually), and she, Hillary and I left for PNC Arena at 7:45am (and didn’t leave until after 4, ha ha). But it was beyond worth it as it was absolutely wonderful to watch our sweet roomie walk across that stage. I love our little graduate so much!

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No Wonder I’m Exhausted

After a difficult semester full of medical twists and turns, I am needing to request a retroactive withdrawal. To begin the process, I had to submit a statement detailing the reasons why I was needing to withdraw.

I found myself struggling for words and anxious about the withdrawal process, so my mom kindly got on the phone and tried to help me figure out how to phrase the letter.

After rattling off a long list of symptoms, procedures, and medical vicissitudes, she finished with:

“This is something I’ve been dealing with for the past 5+ years…”

Wow, she’s right: 5+ years of this crazy, inconsistent life.

5+ years of waking up to fight fatigue, widespread pain, nausea, dizziness, tachycardia, low blood pressure, vertigo, migraines, dystonia, syncope, anaphylaxis, chronic infections, subluxations, dislocations, cognitive impairment, tachycardia…

5+ years of taking more medications than most 80 years olds. Drugs to treat symptoms and disease processes and then even more drugs to treat side effects of those drugs.

5+ years of needle sticks, blown IVs, invasive therapies, painful procedures; “eating” through a tube in my intestines; relying on a wheelchair (though using it less than I should due to fear of judgement); stabbing myself with EpiPens, grabbing at my throat gasping for breath; faking smiles, forcing laughs and constantly hiding behind an “it’s all good”; trying, and usually failing, to balance health, family and school, struggling not to define my existence by my disabilities…

No wonder I’m exhausted.

Duke Prom Spoonie Shenanigans

 

Had an AMAZING night at Duke Children’s Prom with my incredible spoonie sisters, Nicole, Em, & Kayla!  We’ve been talking online via Instagram & FB support groups for over a year now, but this was the first time we all got to meet up together in person!! It was truly awesome. It was such a blessing to talk, laugh, dance, and just be weird together! Love these beautiful ladies so, so much.. ❤

Is This Because I Named You Terd?

Throwback to when I found my duck Terd Jr. in the toilet.

He & Squirt were in their cage in the bathroom because maintenance was coming soon to do a carpet inspection. (Yes, I was indeed hiding two ducks in my apartment– that is beside the point.)

I still vividly remember hearing a loud splashing noise & running in to find…well…this.

Don’t let his little face fool you: he was not deprived! I gave him baths & let him swim all the time. But he had a condition called Angel Wing which meant I had to wrap his wing & he couldn’t get it wet for a few days. I suppose this was his form of rebellion & teenage angst. Stinker.. 😉

And this, my friends, is why we cannot have nice things…