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
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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…

Vertigo

The landscape seems fractured

      as the sky’s plates shift

on one another

 and the horizon tilts  

while bright colors swirl around me

 like paint on a surrealist canvas

and I cannot help but notice that

 the shambling creature

who once lurked in my shadow

now lurches in my shoes,

stretches her legs in mine

and trips up my feet

as I stagger through a swaying world…

 

Medication Tolerance Frustration

I have is a very high medication tolerance. This frequently poses problems in my life. For instance, for my Dilaudid, my pain doctor wrote to take 1-2 mg every six hours PRN and to take a maximum of two doses per day. However, 2 mg barely touches my pain. If I have pain severe enough to give in and take Dilaudid (I will not take medication unless I absolutely cannot bear it), I must take 4 mg to have any effect. I do not get a ‘high’ from it (nor would I wish to). If anything, I might get a little sleepy, but even that is pretty rare. Last semester when I really struggled with dystonia, I used to take Stadol in class or before exams if necessary, and it never once negatively affected my cognitive functioning. I remained awake and alert, and generally received very good grades on my tests. I do not, will not, and have never abused or misused medication. I am not one to be risky and irresponsible like that, and certainly do not engage in illegal activities. I have experienced drug-induced cloudiness as well as drug-induced mania (SSRIs & anesthesia — WORST PERIOD IN MY LIFE), and I absolutely DESPISED every single second of it. I would not take medication to get “high” as I hate that loss of control that many apparently seek. I’ve never even been drunk. I cannot help the fact that my tolerance is so high. My genetics (and perhaps also a built tolerance) are to blame. There are multiple studies out there about the genetic mutations I have with metabolizing certain drugs, as well as research studies about redheads and their increased thresholds for drugs, alcohol and anesthetics.I see a doctor at a pain clinic, and she asks questions and asks me to share things with her– but I am too afraid to tell her that I need more help sometimes. I already have a 7.5 µg Butrans patch and PRN Dilaudid that I use at least once or twice a week… If I tell her that this patch does virtually nothing and that when I have to take Dilaudid, I use more than she recommends, I am afraid she will get upset or, worse, think I am a drug addict or abuser. Narcotic abuse is much more common than I ever thought. After a doctor told me that, I searched “drug seekers” on YouTube and found shows like “Untold Stories of the ER” showing various stories about patients feigning illnesses to get a pain medicine “fix.” Seeing how often doctors see such druggies makes me a bit less angry about being met with rudeness and suspicion in the past…but it’s still a problem. I wish people would just do what they were supposed to and stop making getting help so much harder for those of us who truly need it.

Addicted To Quality Of Life

I suffer from an intractable headache and chronic migraines. And by ‘chronic migraines,’ I pretty much mean daily. To you skeptics out there- yes, that is in fact possible!

The pain can get to the point where I can do nothing else but curl up in a shaking ball and cry, praying for someone to just shoot me. I realize that sounds a bit melodramatic, but unfortunately, most migraine sufferers can relate.

I have tried so, so many migraine medications: Sumatriptan, Maxalt, Cambia, Frova, Fioricet, Nortriptyline, Neurontin, Topamax, Prednisone, Zyprexa– oy vey.

As it stands right now, I do not have an effective preventative medicine. However, I do have a rescue medication: Stadol nasal spray (or, Butorphanol Tartrate).

Stadol has kept me out of the ER more times than I can count…stopped the pounding, squeezing, shooting pain…the nausea, vomiting, vertigo, blindness– or at least decreased it to a survivable level.

But every time I use it, I feel a twinge of fear.

Stadol is a narcotic, and I have heard so many horror stories of people getting terribly addicted, whether physically or psychologically. I have ‘tested’ myself several times, to the best of my ability, to ensure I am not becoming one of those people…and I am 98% sure that I am not (I have gone 29 days without it with no withdrawal symptoms, etc). But I cannot help but be a little nervous using it, especially when thus far, it is the ONLY thing I have tried that has actually helped, aside from Botox injections every three months.

And I do use it often. Do I want to be on narcotics? Of course not. Goodness, if it were up to me, I wouldn’t take any medication at all! But I need it, especially with school starting…I need the relief it brings. The pain just gets to be too much…

I am not addicted to Stadol; I am addicted to quality of life.

E.R. Trip

So, in case you did not read my last post, last night Mrs. K took me to the E.R. because my pupils were acting freaky and migraine was out of this world.

And the conclusion is…drum roll please!

…we don’t know.

The doctor ordered a head CT and shined a bunch of annoying lights in my eyes and a team of neurologists was consulted. CT came back normal (praise God!), but my pupil was still blown and unresponsive. Hmm…

I must say, I went to the hospital kicking and screaming (not literally or they probably would have sent me to a different ward entirely), but it was the absolute best E.R. experience I have ever had. The nurse was super sweet yet mega sarcastic- a perfect combination if I do say so myself. 😉 She talked to us about the woes and joys of nursing school and her IV stick was almost painless. The tech who wheeled me to the CT was hilarious. She kept crashing my gurney into the doors and walls (this with vertigo made for one crazy ride) and told me all about how she passed out on her first day on the job and got admitted. While waiting for the scan, she danced for me…making her own theme music, of course. And the doctor, Dr. McShane? Wow. He was nothing short of a godsend. From the very moment he walked through the door of my hospital room, he had me smiling and laughing. He was incredibly thorough, got a complete history and listened to what I had to say. He also called my neurologist, Dr. Matthews, to let him know what was happening. He wrote a prescription for Stadol to get me through the week. He even googled my conditions!!! (anyone out there with a chronic illness knows just how HUGE this seemingly small act truly is). Just…wow. Thank you, Lord, for Dr. McShane. What a blessing he was!

So, anyway…they gave me Stadol for the pain, told me to follow up with Dr. Matthews (I have an appointment with him on the 19th), and “come back if it gets worse.”

My pupils are still fifty shades of crazy and my head is back to killing me, but the fact that the CT scan came back normal puts my mind at ease. I guess I’ll know more after my appointment Thursday.

Haven’t told my parents about this yet (they are out of town) because I do not want to worry them unnecessarily. They’re coming home tonight…if I still look the way I do now, I won’t have to say much…

-Cassidy

PS- Here are some ER selfies. It’s kind of our tradition… 😉

Valentines ER 1 Valentines ER 3Valentines ER 2

Headed To The E.R.

So…slight issue. Let’s see if you can figure out what I mean:

Pupils

For anyone otherwise unsure, I’ll tell you: this is NOT normal.

My left pupil is small and reactive, but my right is immensely dilated and completely unresponsive. My pupils will often do this, “let’s get all huge and ignore the laws of science” thing, whether it be from a bad migraine or a malfunctioning autonomic nervous system…but never one without the other. This is new.

Other less visible symptoms include a 10+ migraine, vertigo, nausea, ringing in my ears, blurry vision and significant issues with depth perception (the last two come as no big surprise, ha ha).

This crazy eye trick could be due to a number of different things from super scary to laughable…will let you know as soon as I do!

Off to my home away from home,

Cassidy

PS- Oh, and Happy Valentines Day ❤

And The War Wages On

I work my very hardest to be “normal” and not to bring anyone down. However, I must say…

It’s indescribably disheartening to sit helpless as a disease detains you in the prison of your own body. You look back at your former life with nostalgic envy, realizing you took it all for granted. From the most elaborate vacation to a simple walk to the bathroom. Every day without pain or fatigue- when you had the potential to say “yes” to every exciting invitation instead of, “No, I’m too sick” to any suggestion at all…so many times that people cease asking altogether.

What I would give for the “normal”- even “boring”- feelings that many my age detest. I would love to get up early to the sound of an alarm clock jarring me out of a sweet dreamland for yet another predictable day of monotony. To get up out of bed, brush my teeth, shower, get dressed, eat breakfast…

To not have to worry about about medicines, treatments, injections, IVs, emergency room visits, hospital stays, dizziness, fainting, blacking out, heart palpitations, dangerously low blood pressure, vertigo, excessive fatigue, weakness, nausea, vomiting, dehydration, migraines, blindness, shortness of breath, tachycardia, hives, anaphylaxis…

To set out to enjoy another day of teenage normalcy instead of settling into the rigor that is the 24/7 management of an unpredictable and all-consuming illness, hoping that my well-disciplined routine will allow me one more day of maintenance and “just getting by.”

I am not seeking your pity- I am incredibly thankful for the life I have, truly, despite my limitations. But I do plead for your understanding.

Please see that I am not my illnesses: I am me…

I’m holding my ground as the army that is chronic illness pushes forward. It may have more weaponry and experience, but I have an amazing team, a little stubbornness, and a lot of untiring faith.