Happy Feeding Tube Awareness Week!

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I Missed You <3

I never knew it was possible to miss someone you had never actually met, but that is always how we felt. The first thing we said upon embracing each other for the first time was, “I MISSED YOU!!!” ♥️

I got to see my Em!!

While we lived on opposite sides of the country most of our lives, this girl been with me through it all– my first real spoonie friend! In the past 4.5 years we’ve been friends, we’ve spent countless nights on the phone, FaceTiming IMG_4268until dawn, supporting each other through life’s craziness & trying to make sense of the world. We were both so sick & oh so scared when we met…dealing with mysterious & debilitating symptoms, overwhelmed as we collected diagnosis after diagnosis. We spent hours talking about everything & nothing at all, often staying on the line with little lullabies or reassuring words until the other was asleep.

Crazy to look back & see how far we’ve come! I truly don’t know what I would have done without her all those years.

This girl sees me- even when I try so hard to hide inside myself. She makes me laugh with her sarcasm & morbid sense of humor. She holds me & reassures me when I’m sick, telling me not to be embarrassed. She reminds me it’s okay to break down sometimes & loves me right through it. She makes me feel accepted, wanted- completely safe & loved.

I can’t help but smile when I look at the beautiful young woman before me. Em, I’m so beyond proud of everything you’ve overcome & the person you are today. You inspire me & I am beyond blessed to call you my friend & little sissy 💕 My heart is so, so full!

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Happy 23 to Me!

Happy birthday to me; I’m officially 23! 🎉🎈

I got birthday hugs & the sweetest gifts from the amazing College Inn crew!  Tifani gave me this fancy mug & a beautiful candle that smells sooooo good & says “Hello, Sunshine” ☀️ She said I am the most sunshine-y person she knows & I always brighten her day! I teared up & honestly still do thinking about it. And Austin gave me the bright, gorgeous flowers you see in the pictures below! I was so surprised & so happy I was literally shaking. I still can’t believe they did that!

Then I got to spend my birthday evening with my parents & Clyde 🙂 They showed up to my apartment door wearing giant party hats & big, cheesy smiles…which totally caught the maintenance workers off guard when they answered the door, lol. We went to Mellow Mushroom & had some delicious gluten free pizza with onions (my favorite)! After dinner, we went to McDonalds & sat at a booth for hours drinking hot chocolate, just talking & laughing about everything & nothing at all. I am so incredibly blessed to have a family who truly enjoys one another’s company & who can have fun doing just about anything. My parents are my best friends & I don’t know what I would do without them. We are a dysfunctional bunch, but I wouldn’t change a thing.. ❤

And Peter wants to take me to a birthday dinner tomorrow night! We were supposed to see each other tonight, but I was feeling a bit low after some things happened & so I asked if we could reschedule. I am actually excited we’re going tomorrow instead, because, as dumb as this may sound, that means the celebration isn’t over  🎉

I received some really, really sweet text messages & voicemails today that reminded how many people out there truly care & love me, today & every day, even though we may not get to see one another often. I really needed that, especially lately.. ❤

I truly appreciate everyone who helped make my special day so special, both in person & from a distance! I feel the love 😘

Here’s to year 23!!

 

 

 

 

Spoonie Party!

I had the BEST time with these lovely ladies today!  I cannot even begin to express how needed this get-together was…not just for me, but for all of us.  Spending time with people who truly get it– talking, laughing, commiserating, joking, and just BEING, no strings attached– is truly the best medicine.  No one flinched when someone whipped out a nebulizer or strapped on a neck brace or flushed their port or tripped over their tubing. Laughing, we raced up to help each other (usually just adding to the chaos…lol, but the thought was there).  It was the first time in a long time I felt genuinely happy.. ❤

The Reality of Chronic Illness: Prom Edition

Just realized I never shared this! Check out my amazing spoonie sister Em’s blog post about our experience attending Duke Children’s Hospital Prom…and all that went on ‘behind the scenes’ to prepare and recuperate… 🙂

Through the Peaks and Valleys

Last Saturday (April 22nd) Duke Children’s Hospital held their very first PROM! I had the amazing opportunity to not only attend but I got to attend with 3 fantastic ladies that I have gotten to know over the last year online! We share quite the list of medical diagnosis’ and life experiences.

Pre-Prom Prep!

Prom prep started about a week before the actual prom. Cancelling doctors appointments, scheduling doctors appointments, ER visits, lots of medicine, and rest rest rest!

Pre-prom prep (IV fluids, Nutrition, pain meds, steroids and prayer!)

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While we got ready for prom before getting our dresses on and doing our make-up we pre-medicated and talked about how much we get it. There was no need to explain anything or feel ashamed because they live it too! (Though I so wish none of us had to, it’s nice to not feel so alone).

We all meet online in…

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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. We are 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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