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…
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.
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.. 😉
I have been SO sick these past few days. My mast cells are kicking my butt big time, & I’ve had to use three EpiPens in the past 19 hours alone. I really should stop complaining & appreciate that life isn’t like this every day…but the pain & nausea is crippling & all I can think about is how I want it all to just end…
Well, I am supposed to take an Anatomy & Physiology exam in 4 hours & 9 minutes…but that’s not happening. 😦
My health is much more stable than it has been in years past: I really have no right to complain. But things have declined since last semester & I feel so lousy 24/7 with dizziness, vertigo, nausea, migraines, joint pain, abdominal pain & distention, sharp pins & needles in my fingers, chest tightness, ulceration & bleeding in/around my stoma, feeding tube troubles, anaphylaxis, temperature regulation issues, bladder inflammation, UTIs, blood pooling, weakness, etc. etc. etc.
Academically, I am drowning. Studying for this test, I’ve watched videos, made flashcards, drawn pictures, constructed diagrams, read the textbook, took online quizzes– but NOTHING is sticking. My fatigue has been crippling & my brain fog has been worse than ever before. I am SO burnt out from fighting so hard to accomplish tasks most my age don’t even have to think twice about.
And the most frustrating part of all?
Being sick, taking a billion medications & supplements, doctors appointments, procedures– all keep me from giving 100% in school.
And then, on the other hand…
Being in school, going to classes, doing homework, studying, going to necessary meetings– all keep me from giving 100% to taking care of my health.
It is definitely a catch-22!
Anyway, tonight I made some big decisions about this semester & about my academic endeavors as a whole. I have a meeting with my advisor tomorrow, so we shall see. I am hoping to leave that meeting with a plan & some hope for the future…
I have been really struggling to find my words lately, and it has been incredibly disheartening. Writing has always been something I’ve enjoyed and something in which I could seek clarity and solace, but these days even sending text messages is a chore. There is so much I want to say, but the thoughts slip through my fingers before I can put pen to paper. I’ve noticed this struggle to form cohesive sentences has gotten worse since my last concussion (lucky #7). Even speaking takes more mental energy than it has in days prior. I’m really hoping this cloudiness is temporary…
Are you looking through our charts, our lengthy and complicated charts, wondering what you got yourself into? Yeah, we know. It’s OK. We know we aren’t the type of patient most doctors like to take on. We can’t be easily fixed and we know that can be disheartening and frustrating for you. We get disheartened and frustrated, too. Hey, look at that! Common ground. Not a bad place to start!
So, here’s a little story about when I went to REX hospital to get a new feeding tube placed after losing mine earlier this week.
First, a little backstory: When it fell out (more like when it was RIPPED out as I fell down the stairs), I covered the stoma in a sterile dressing and headed straight to WakeMed North where I met Hillary. I straight up asked the nurses there if this was something they were equip to handle, and they suggested we head to REX instead where my surgery was done. I thought that sounded like a great idea, and so off we went.
We waited in the REX ER for hours before they brought me back. It was another two hours of lying in the bed until they informed us they had no idea what to do and that I should just call my surgeon in the morning. I asked if they would contact the on-call surgeon or at least give me something to stick in my stoma so my newly-established tract would not close, but they offered no help and said it should be fine. New to the feeding tube world, I did not really question their judgement. I mean, these were doctors…at the hospital in which I had my surgery…they knew what they were doing, right? So off we went back to College Inn. In the morning, I called my surgeon’s office, and was scheduled to go to Interventional Radiology today (July 30th) so they could slide a new tube in.
Upon arriving at the hospital, they got me registered, started an IV, hooked me up to all the monitors, and rolled me in to the ‘operating’ room. I was transported on to the table and strapped down. It wasn’t until that point that someone decided to remove the bandage to see what they would be working with (aka my stoma/intestinal tract). The doctor carefully peeled back the bandage…and then I heard him curse. He began yelling at the nurses and other physicians & technicians in the room, demanding to know why no one had checked this before.
The stoma and tract was so new, it had completely closed up!
Guess what that means for me? Yet another major laparoscopic j-tube surgery, as if the first one never happened at all. I have to go through it all over again, just because the ER wouldn’t help and thought it would be “okay” despite my objections and pleading for a second opinion.
The above picture is our “wtf, really?” faces from when we got back in the car after this whole ordeal. I tried to laugh and joke about it at first, but now that I’m back at the apartment and alone, I cannot help but cry. The fun just never ends…
Do you like my new head gear? 😉 These electrodes attached to my scalp will monitor my brain activity for the next day or so. Really, really hoping they can get to the bottom of the seizures I’ve been having. Abdominal surgery is painful enough, but the twitching, convulsing and muscle contractions from severe dystonia & these weird seizures is making it EXCRUCIATING. Every part of my body hurts so badly & it’s so hard not to cry from pain. I’m exhausted, my poor parents are terrified, & the doctors are pretty dumbfounded at this point…
I’m really worried about Sharon. She just seems so stressed and worn lately. Maybe I’m reading too much into it…I tend to overanalyze people’s expressions, body language, tone, etc., especially when it’s someone I care for deeply. But she just seems so exhausted. Older, somehow. I don’t like what this new place is doing to her…