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!!

 

 

 

 

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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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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.. ❤

“But You Don’t Look Sick”

Earlier tonight, I went to a house party with my roommates. I hadn’t been feeling well all day and I really did not want to go, but it was the first time all three of us were going out together since Halloween and I didn’t want to be a party pooper.

It turns out my gut feeling was right and I should have stayed home, as I got really sick at the party. There were so many strong odors, loud music and yelling and bright flashing lights…

The room began to spin like I was on a tilt-a-whirl. My head was splitting…my heart was pounding, racing around 180 and skipping beats…I was shaking, fighting not to throw up…and I was teetering at the point of pre-syncope where I was sure I was going to lose consciousness.

I ended up running outside to the front yard and sitting in the grass. My throat was beginning to close, and it was getting very hard to breathe– I needed an EpiPen.

But this story isn’t about getting sick at a social gathering and needing to go home…unfortunately, that is a pretty common occurrence and nothing worth writing home about… 😉 This is about what happened after I realized I needed to leave.

As I searched frantically through my tube bag, I realized I left my keys at another apartment at College Inn. I ran back inside to where my roommates where playing beer pong. Standing there, shaking from epi and further set off by all the overwhelming stimulus, I explained the my situation to them.

Lucie held my arm and tried to help me come up with a plan. It was difficult because she was a little drunk and the music was booming, but she was trying her best and eventually suggested I use her keys and just leave the apartment unlocked for when she and Hannah returned later. It wasn’t an ideal plan, but we figured out a way this could work.

After thanking Lucie profusely, I was ready to run out of the house when Hannah loudly interjected, “You’re leaving? But you look FINE!”

I explained to her that I just had to use an EpiPen, I felt like I was going to pass out, and I was NOT fine. She rolled her eyes, and then rudely proceeded to touched all over my face and neck saying, “Your face is not even swollen!” and making a bunch of similar comments, callous and even accusing.  She ended her unsolicited assessment with, “You’re fine, you just don’t want to stay at the party. Come on, you told me that at the beginning.”

Not only did she brush me off and only begrudgingly offer advice, rolling her eyes every time I repeated I could not hear her over the music and the ringing in my ears (that was signaling I was about to faint)…she even stopped Lucie from trying to help me!

After helplessly trying to explain my health situation a few more times, I couldn’t take it anymore and ran outside. I needed to get an uber and get out of there fast.

When they came outside with me, where there was no loud music or crowd of partiers, it became obvious that I wasn’t lying about or exaggerating my situation.

Then Hannah was like “Ohhh, I thought you were faking it! I guess you’re not!” and then and ONLY then did she care, stop making rude comments, and proceed to try to help me.

The lights and the loud, crowded party atmosphere made me feel so scared as my body was failing me…and things certainly would have been a lot scarier (perhaps even escalating to needing an ambulance) if Lucie were not there. I am so thankful for her.

Now, I understand that Hannah, too, was a bit drunk. And I’ve seen her drunk multiple times before & know that she gets really wrapped up in the moment…but I cannot help but feel a little hurt (especially in this fragile extra sickly epi’ed-up state I suppose, haha). I don’t mean to be emotional, but Hannah’s callousness and aggressive assumption that just because I ‘looked’ okay in the moment, meant I must be fine and merely “faking it” really, REALLY hurt my feelings and made a bad situation much worse…

I got home and cried so hard. It still stings to think about, honestly.

I am not going to hold a grudge…not just because she was slightly intoxicated, but because continuing to dwell on it won’t help anyone. I will be fine and bounce back by the time she & Lucie get home from the party…

But interactions like this one tonight are the reason we desperately need more awareness about these complex, debilitating invisible illnesses. We must stop accusations like, “But you don’t look sick” and save others from having to endure the judgement, mean comments, and unwillingness to help that I faced tonight.

This is definitely not in reference to Shannon (she’s not usually like this & she’s my friend) or this situation at all…but as we spoonies like to say:  I don’t look sick? Well, you don’t look stupid, but ya know…looks can be deceiving.. 😉

It’s Not Their Journey To Make Sense Of

“Not everyone will understand your journey. That’s fine. It’s not their journey to make sense of. It’s yours.”

My life went to hell in August of 2012. It had been headed that way for years and years, but August 9th was the day that all was officially lost, with no hope of ever even returning to baseline…

And on that spiraling path to hell, I not only lost my family, my home, my belongings, many of my friends– I also lost my health. At a time in life where most were at prom, doing college tours, vacationing with family and friends, I became sicker and sicker with mysterious symptoms until I was completely disabled.

As time went on, I tried a multitude of medications, procedures, therapies and diets just to be met with more sickness, pain and fear.

I grieve who and what I once was. I used to be healthier and full of energy, able to eat whatever I wanted and do whatever I wanted. I was good in school. I volunteered. I dreamed big dreams and made strides toward making those dreams a reality. Despite a life of turmoil and inconsistency at home, I was able to push through and keep going. My friends remember me that way.

But now this body of mine is limited and thus my life is limited…

Every time life hands me a new limitation, I embark on the path of adapting to a new reality. Accepting new limitations throughout these years has been difficult for me and seems to be even more difficult for my parents.

I suppose I should not have been surprised that my peers and friends struggled with them too…

As I grew sicker, my friends became distant, one by one, until they eventually fell off the map altogether.

Their disappearance was due largely to my inability to keep up– physically, of course…but often mentally and emotionally, too, as life circumstances and the 24/7 nature of chronic illness wore me out so intensely…

I would often find myself feeling sad, guilty, even angry…and always very, very lonely.

Where were all those who I helped in their time of need? Those I had stayed up all night with, holding them as they cried? Those whose aid I rushed to at 3am, regardless of what was going on in my own life? Those who I defended, fought for, even lied for? Those whose children I cared for as my own while they tried to piece their own lives together?

It hurt for my friends to leave me and not support me through some of my darkest days, but I have slowly come to realize it’s really not about my limits but about their own.

We whose worlds are colored by chronic illness and disability are physically limited, but others are limited in their ability to understand and empathize.

At this point, the majority know I struggle with my health…my feeding tube and wheelchair use make it pretty obvious at times. However, when I am around others, I wear a mask I’ve perfected over the years: a smile, a laugh, a “pretty good, thanks, how are you?” I do my very best to hide the truth about the debilitating pain and discomfort I constantly endure. I do this for their sake, sure– but also because I have an EXTREMELY difficult time admitting things are not okay or that I need help (even to doctors and therapists). I am perpetually optimistic, at least outwardly. All of this to say, it is no surprise most have no idea the kind of impact chronic illness has on every part of my life and daily functioning.

Everyone has battles and struggles in this life, but for most, their difficulties do not reside in their bodies. They experience sickness and physical pain, sure– but not in the way we do. Pain is not their constant companion, always lurking in their shadow. They are unable to truly comprehend the realities of a life battling your own body, and therefore they easily dismiss it as an exaggeration, nuisance or simple idiosyncrasy.

I cannot help but feel annoyed, isolated or hurt by the gross lack of understanding at times…I am only human. But I have realized that it is not about me. It’s taken a long time to accept this, and many days I still struggle to…but I am finding strength in my fragility and lessons amidst my pain.

“Not everyone will understand your journey. That’s fine. It’s not their journey to make sense of. It’s yours.”

Keep fighting the good fight, guys.. ❤