Ramblings of A Prisoner of Flesh

Screen Shot 2017-12-11 at 4.18.51 PMChronic illness is the forced embodiment of an unsolicited reality

It is detecting the ever-changing direction of the wind,

Nimble focus to which way it screams the loudest

A constant game of tug-of-war

Paralyzed by pain- aching, burning, stabbing

Awake in constant slumber, a fog unyielding

Racing thoughts get lost on the way to the tongue

A prisoner of failing flesh

Always too much, too little

Never just enough…

Once aiming for superlatives, now grounded in indistinction

Unclenching hyper-vigilance and embracing helpless dependency

“Sustainable”, instead of “healthy”, as the label of betterment

Trading existing for thriving

Surviving for living

Understanding for tolerance, and then only sometimes

Living in everyone’s expectation that if they try; at access, at

niceness, then that trying, for us, should be enough

Slivers of doubt become trusted tools

Can I do this? Will they be there? What will be left of me?

Be prepared for anything.

Be prepared for anything…

Advertisements

 

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

And that’s just gonna have to be okay…

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…

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.. 😉

Mast Cells: 3 — Cassidy: 0

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…

Catch-22

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…

IMG_8731
studying the cardiovascular system

Struggling For Words

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…

To The Doctors Of Chronic Illness Patients

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!

Read more: http://themighty.com/2015/11/to-the-doctors-of-chronic-illness-patients/#ixzz3qYSgQutb