Au Revior, Ben!

It hasn’t even been a full week since Ben left to go back to France, but we miss her so much already! 😭 We are blessed to have gotten to know this amazing girl over the past year. Au revoir Ben! We love you so much ♥️🇫🇷

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Clarity

I did something bad, and I feel really guilty about it.  Not guilty about what I actually did, per se, but guilty over lying.  Or, at least omitting the truth and being otherwise deceitful…

Because of severe exhaustion, both physically and mentally, I have been really struggling lately to be an active participant in my life.  And, whether due to injury from 9+ concussions, lack of blood flow to the brain, medication side effects, not sleeping, migraine pain and cloudiness or simply a bad cold or a long night of vomiting, my brain fog has been absolutely debilitating.  Unsurprisingly, this has significantly impacted my academic standing.  I love my major and will study for hours on end, but I cannot seem to retain information no matter how hard I try. My short term memory is laughable, and I just feel totally “out of it” overall.

So…I took some Adderall.

One of my physicians prescribed me Adderall in 2014 to trial for hypotension and chronic fatigue and it worked beautifully.

However, the Adderall I took this time was not my prescription. I bought it.

Yes, I BOUGHT IT from a guy in our apartment complex who I knew dealt drugs. I’ve never done anything like that before. 10 little blue pills for $50.

It was almost as if a weighted, fuzzy blanket had been lifted and someone cracked a window to allow in some fresh air. My thoughts didn’t feel as loud and chaotic. I felt peaceful and calm, yet alert and capable.

$50 allowed me to catch up and succeed academically despite my broken body, saving my semester.

I didn’t experience any negative side effects. No nausea, no noticeable increase in tachycardia, no shakiness, no anxiety.

Those pills pulled me from the deepest pits of depression – both with happiness and relief over finally succeeding and getting caught up with school and the fact that I actually had some energy for once.

Sitting up wasn’t a chore. Writing an email or replying to a text message was no longer a daunting task. I looked forward to reading once again. Homework and studying didn’t feel impossible.

I experienced mental clarity for the first time since I can remember (ha ha, accidental brain fog/poor memory joke). That in itself gave me hope.

I was honestly starting to believe that I’d never be able to think again and that I was somehow past the point of fixing…but this experience has shown me that the person I used to know and love (or at least like, haha) is still in there somewhere. While I may live in a broken body, I am not broken.

I’m not sure if my moral compass was bruised along with my brain, but my feelings of relief and excitement are overshadowing my guilt and shame, at least for the time being.

I still have one left…

It’s Only Been 3 Days…

I am honestly terrified for this semester.  In so many ways, this is my last chance to turn things around.  But I am so, so very worn– physically, mentally & emotionally.  Simply getting out of bed or responding to text messages seems too hard some days, nevermind successfully functioning as a student.  I know that worrying fixes nothing, and I’m trying not to get too ahead of myself: it’s only been three days.  But before the semester even began, I felt like I was drowning.  I’m working my very hardest and trying to keep my head up, but I really don’t think I can do this…

I Can Still Make A Difference

In light of everything that has happened this semester, I’ve been working to come up with ways I can make a difference in this world without a college degree. Here are some ideas…

  • Become a guardian ad litem
  • Establish a restaurant that feeds the homeless
  • Foster to adopt medically fragile children & teens
  • Fundraise to pay for surgeries for children whose families cannot afford it
  • Get my CNA license
  • Help runaway teens reunite with their families or become independent/emancipated from them
  • Make my home into a shelter for homeless women & children
  • Publish book about life hacks for tubies– for tubies by tubies
  • Start a nonprofit organization like Chronic Lifestyle Understanding & Education (CLUE)
  • Start an orphanage or group home in conjunction with an animal shelter so each child can have a pet
  • Start support groups for chronically ill teenagers & young adults
  • Throw birthday parties for children in the hospital
  • Volunteer and/or work at a nursing home
  • Volunteer for Crisis Text Line
  • Work as a missionary

To be continued… 🙂

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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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.

“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.. 😉