chronically-kayleigh

[chronically-kayleigh]

it’s been a while, don’t know if i’m messaging into the abyss or not… i haven’t posted since 2022 lol…

a few updates:

-my cardiologist is retiring :(

-my endocrinologist MOVED?!??!!!

-i’ve had two hospital stays so far this year, equating to abt 10 days total… oh also had my first ambulance ride (i slept through the whole thing)

-i have a diagnosis of hypermobile ehlers-danlos syndrome, which we think my mom has as well

-i’m still doing theatre and i want to go into it professionally. i’ll be a junior this coming year and i want to get a BFA in musical theatre

-i did a show in a major city for the first time this past summer. i was in a month-long intensive in DC and we put on a full show and performed in a real venue

-i’m a textbook case of small fiber neuropathy, they did the skin biopsy just to tell me that it was inconclusive because there wasn’t enough to compare it to in my age group

-i’m 16 now, i have my permit (ive had it since november)… and i have less than 4 hours total logged… i have driving anxiety

-i had a callback saturday and am waiting on an update from that

-i’ve found a good therapist (she brings her dog sometimes too)

and that’s about all i can think of at the moment, but i’m hoping to start this back up.

[chronically-kayleigh]

anxiety is so weird like why is my mental illness in my stomach

[chronically-kayleigh]

March 31, 2022

So sorry for not posting yesterday! I thought I had, but apparently not. Nothing really happened then, so it wouldn't be very interesting anyways.

So, today I had my rheumatology appt. After the whole process, we've come to the conclusion that I have Fibromyalgia. They're still running blood tests to make sure nothing was missed, but, I have somewhat of a diagnosis.

The doctor there is sending me to a pain clinic or smth, where they'll figure out how this will be treated. Also, I have an endocrinology appt on Monday.

I also had Annie rehearsal & got to try on some of my costumes for the first time!!!!!!

“The truth that many people never understand is that the more you try to avoid suffering, the more you suffer, because smaller and more insignificant things begin to torture you, in proportion to your fear of being hurt.” — Thomas Merton

[chronically-kayleigh]

March 29, 2022

Had a headache and awful joint pain when I woke up this morning, so I didn't go to co-op today, but I still went to rehearsal later because I missed Sunday & do NOT want to miss another.

But yeah, not much else happened today other than the above and me bingeing Netflix.

“You are strong when you know your weaknesses. You are beautiful when you appreciate your flaws. You are wise when you learn from your mistakes.” — Unknown

[chronically-kayleigh]

rb to relieve the back pain of the person u reblogged this from

[chronically-kayleigh]

March 28, 2022

Mondays are never very eventful for me. Other than the addition of allergy meds to my usual meds, not much went on today. Of course, I'm exhausted (as per usual) and am writing this from my bed, about to take more allergy meds and read.

Reading is another one of my favorite things, it's such a calming practice. Getting to transport yourself through your mind to another world, just by reading tattooed paper. It's something I'd consider magical.

Anyways, Imma go read and pet my dog (photo of him included).

“You can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass.” — Timber Hawkeye

[chronically-kayleigh]

when i had my first mri, they said i could put on music... WHICH WAS TRULY A WASTE CONSIDERING HOW LOUD THAT STUPID MACHINE IS :)

MRI noises:

thOCKchk

bvvbvvbvvbvvbvvb

whhhwhhhwhhhwhwhwh

bEpBePbEpBep

vwOOOOONF

ETTETTETTETTETT

[chronically-kayleigh]

March 27, 2022

So sorry I didn't have time to post yesterday! Got back from the concert after midnight and crashed.

It was so fun! Except for the fact that I woke up today and had an awful cold... (I did get tested! I don't have anything like Strep or COVID, so that's very good) so I've been staying very hydrated. The real bummer is that I had to miss getting baptized today and I had to miss choreo rehearsal for NYC.

Today wasn't very entertaining because I've felt like crap, so I've just been doing laundry and watching YouTube.

“Resting is not laziness, it’s medicine!” — Glenn Schweitzer

[chronically-kayleigh]

March 25, 2022

Didn't really do much today, I did some color-by-numbers (they are so fun omg) and had a short meeting at my church today, but that's about it.

I have dance and a concert tomorrow (I am stayed heavily masked and sanitized lol, and I'm also sitting in between people I know. Please send good thoughts my way! This is my first concert since 2019 and I am terrified of getting sick.

Heck, when I got my second dose of the COVID vax, I felt awful for a good 3 days before my symptoms got better, so I refuse to get COVID (if I refuse it, the germs will die... that is my amazing logic for today).

Anyways, whilst on the topic of masks and vaccines and all that jazz, please, please, please get vaccinated if you can! Even if you aren't immunocompromised, you could easily endanger someone who is. Please stay safe and respect others and their health!

“You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.” — Unknown

[chronically-kayleigh]

“Communicating the complex nature of chronic illness to others is almost as taxing as trying to reconfigure your life to accommodate something constantly hellbent on thwarting it. This is why so many of us choose to say nothing at all, or just find it easier to come up with excuses to stay at home instead of suffering in silence around others. The harmful ideology that “youth is health” only compounds the adversity and discomfort many of us contend with on a daily basis, and it takes a tremendous toll on our mental health.

A day at the beach, a daytrip somewhere hours away, even something as innocuous as going out to dinner and seeing where the night takes you — all plausible items on the social itinerary for an able-bodied young person — are activities riddled with booby traps for someone like me, a chronically ill 30-year-old whose care regimen requires a lot of thought and attention. Making plans with friends already takes a significant amount of energy out of me. Anxiety replaces excitement because I don’t know how I’m going to feel that day or what my energy level will be. I never know if I’m going to need to forgo certain activities, or cancel altogether, and all of the variables I have to consider slowly sap me of any enthusiasm I had to begin with. I’m mortified that those in my company — friends both new and old — will see me as high-maintenance, an inconvenience or worse, dead weight to drag around while they try to enjoy something simple like strolling through a field of tulips at a botanical garden. It’s no surprise that many of us develop a proclivity toward isolation.”

[chronically-kayleigh]

small steps still move you forward

[chronically-kayleigh]

March 24, 2022

I don't have much energy left, so this won't be long.

I'm feeling decent, my lower body is super sore tho. I had co-op & Annie choreo rehearsal today.

Also, I've been insanely tired as of late, I get a decent amount of sleep though... but, then again, 8 hours is 4 hours. It's always half the time in its worth.

“I fight for my health every day in ways that most people don’t understand. I’m not lazy. I’m a warrior!” — Unknown

[chronically-kayleigh]

a majorly important reminder!!!

Disabled people actually usually downplay their symptoms out of fear of making others uncomfortable.

Disabled people actually usually downplay their symptoms out of fear of making others uncomfortable.

Disabled people actually usually downplay their symptoms out of fear of making others uncomfortable.

Disabled people actually usually downplay their symptoms out of fear of making others uncomfortable.

Disabled people actually usually downplay their symptoms out of fear of making others uncomfortable.

Disabled people actually usually downplay their symptoms out of fear of making others uncomfortable.

Remember that next time you ask if something truly is needed, or if it really is that bad.

[chronically-kayleigh]

reblog this if your blog is a safe space on april fools and won’t have any jumpers, screamers, or anything scary or anxiety inducing

[chronically-kayleigh]

March 23, 2022

Today was a decent one.

I slept in a lot today, then went ice skating with my friends. I used the walker-thing the entire time (I refuse to risk it.) We also went to chick-fil-a afterward and I love those cookies.

But, using the walker put a lot of stress on my arms and back... and advil doesn't do much for me nowadays.

Also, my rheumatologist appt is next week, not tomorrow. Turns out, I had an endocrinology appt during rehearsal for my school play... which we have maybe 8 more rehearsals so... we canceled it. To be honest, I'm actually excited for my rheumatology appt next week, mainly because I just want an answer.

“My path may be different, but I am not lost.” — Unknown

[chronically-kayleigh]

[chronically-kayleigh]

March 22, 2022

Nearly forgot to post today. I was out all day from 9 am - 10 pm. I had co-op, then went out to dinner with my grandma, then went to rehearsal.

There's this odd part in the dance we worked on for today (I Think I'm Gonna Like it Here) that reminds me a bit of how I feel in a sense. Near the end of the song, we do this one move and then I have to make it to upstage right by the time we say "welcome!" I can never get it right. I'm always trying to catch up.

In a sense, that's how I tend to feel with chronic illness. I'm always trying to catch up to those who don't have these illnesses. I may get there eventually, but it's such a long process.

“Sometimes things fall apart so that better things can fall together.” — Marilyn Monroe