It’s been two years today since I had my gallbladder surgically removed! Two years free from crippling gallbladder ‘attacks’ that knocked me to the floor. It’s a nice thing to reflect on, because with that one surgery, I was CURED of what the pathologists deemed chronic cholecystitis. I wish all my illnesses and health woes had such easy fixes!
May is Ehlers-Danlos Syndromes Awareness Month! I plan to put together an awareness video eventually…but in the meantime, here’s a sneak peak at some weird EDS hand movements. Notice how my hand almost looks like it’s turned inside out? That ‘flying swan’ hand position is like our EDS gang sign.. 😉
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!
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.
The voice in my head speaks,
like a voiceover in some twisted film
to which only I am privy:
“It was never a question of how I would die.
The only question was,
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.. ❤
Messages from my sweet best friend remind me why I keep fighting through nights like these. Love this girl more than words could ever express. Through it all, she gives the best pep talks & is always there to hold me, dry my tears, make me laugh, & fight right along side me. I am so, so incredibly blessed… ❤
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 Shannon 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 Shannon 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 Shannon 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 Shannon, 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 Shannon’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.. 😉