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…

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Urine-ologist With Mom

Today I had another slew of appointments, one of them being with my urologist at Duke South. It was a pretty uneventful appointment, but I am incredibly frustrated with the state of my urological health…

I have my THIRD infection in two months! The first two were complicated infections with uncommon strains of bacteria, and they really kicked my butt. This most recent culture grew Klebsiella pneumoniae which is a pretty common culprit of UTIs…but it is a difficult bacteria to get rid of nonetheless.

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I honestly do not remember what it feels like to not have a UTI! My bladder and kidneys are constantly hurting, with pain ranging from slight soreness to knock-you-to-the-floor sharpness.

My urologist reassured me today that I am doing nothing wrong to cause these problems.

These infections are a result of EDS causing my bladder to be ‘too stretchy’ and dysautonomia affecting nerve signals to my smooth muscles. She also said that prednisone is likely complicating things as it is an immunosuppressant.

As far as managing my condition(s) goes (in this case, taking prophylactic antibiotics and self-cathing), I am doing everything right. I suppose knowing that makes me feel a little better…but in a way, the fact that this is not my fault increases my frustration because there isn’t anything I can do to improve the situation… agh.

On a more positive note, appointments with mom are always an adventure! She’s truly a character, that one. Here’s a video of some post-appointment shenanigans with my partner in crime.. 🙂 Love this crazy woman so much! ❤

Two Years Gallbladder Free!

It’s been two years today since I had my gallbladder surgically removed! Two years free from crippling gallbladder ‘attacks’ that knocked me to the floor. It’s a nice thing to reflect on, because with that one surgery, I was CURED of what the pathologists deemed chronic cholecystitis. I wish all my illnesses and health woes had such easy fixes!

Duke Prom Spoonie Shenanigans

 

Had an AMAZING night at Duke Children’s Prom with my incredible spoonie sisters, Nicole, Em, & Kayla!  We’ve been talking online via Instagram & FB support groups for over a year now, but this was the first time we all got to meet up together in person!! It was truly awesome. It was such a blessing to talk, laugh, dance, and just be weird together! Love these beautiful ladies so, so much.. ❤

Duke Syncope & Dysautonomia Appt

Had a good appointment at the Duke Syncope & Dysautonomia Clinic today! Being honest with doctors FullSizeRenderis not something that comes easy to me, but I think I did pretty well today. My blood pressure readings are looking MUCH better than they have in months prior! That is likely due to super high doses of Midodrine, & Fludrocortisone, as well as 12mg of Prednisone daily…but it is a good thing regardless. They were concerned with my heart rate, though. Despite taking all my Dysautonomia meds (including Bystolic, my beta blocker) & getting IV infusions, I am still experiencing significant tachycardia, especially upon postural changes. My orthostatic vitals today, for example: 113bpm lying down, 129bpm sitting up, 147bpm standing. Now, those numbers aren’t terrible…I’ve definitely seen worse, this week alone! But Jenn was not happy with those numbers & said that kind of increase upon sitting/standing is not good considering the medications should be taking care of those dramatic spikes. She was also a bit concerned because that was simply standing still, not trying to walk and carry on about the day. We agreed that the Bystolic is not the right med for me as it drops my blood pressure too low (causing me to need more Midodrine which I already take an overdose of each day)…so she is putting me on a new med called Ivabradine. I’m really excited because Ivabradine helps lower heart rate without impacting blood pressure! Only problem is it’s a med generally used for heart failure patients, so we will probably have to fight with insurance to get it covered. But Jenn says she’s confident we’ll win the case, considering I’ve tried almost every other beta blocker out there and my symptoms are so severe! Really hoping it is a quick process getting it approved, as I am super excited to try…especially because, once we finally get my heart rate under control, I get to begin physical therapy! IMG_9020Jenn referred me today to a PT who is familiar with Ehlers-Danlos Syndrome & POTS! Nicole sees him and really likes him. Apparently, he understands the pain, dislocations, fatigue, weakness, etc. that comes with EDS & how to best work with/through such symptoms. Really looking forward to it! Also while Mom & I were at Duke, we met a fellow Zebra who was using a wheelchair with SmartDrive. We ended up talking with her about it (& other things) for a good 15 minutes, and on the way home from the hospital, mom decided we will have a fundraiser because I need one, too! More on that later.. 🙂 Now for a nap– that appointment left me exhausted!

 

 

Feeding Tube Change # ?

Getting a new J tube today at Duke Raleigh! This time, they are going to sedate me– hallelujah. I have second-degree burns around my stoma (from bile), granulation tissue and ulceration around/inside of the tract. Plus PTSD from previous changes…yikes. Here’s to hoping the sedation…well…sedates me!

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BE BRAVE

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BIO 181 & A Whisper In The Storm

I have no words to describe what is happening right now. My heart is shattered. I am tired and weary and I feel so very afraid. But God is holding us amidst this chaos, even though His presence isn’t always immediately apparent…

Dr. Kosal is my Biology professor and one of the kindest, most compassionate people I have ever known (more on that later). Unable to leave my dad’s side at the hospital, I missed the final exam. I couldn’t even let her know I was going to miss the exam or why because there are no phones or computers allowed when someone is waiting to be involuntarily committed. It was impossible to sneak considering my dad’s rogue state and my role as a primary caretaker. When I could finally access my phone, I emailed her in a panicked frenzy, apologizing profusely, feeling terrible, and begging for a retroactive ‘incomplete’ in the class. Her response…well…it was a total God thing.

Here’s are some excerpts (6/22/16):

“Hi Cassidy,

I’m so sorry to read all of this.  It sounds like you have been given a heavy load to carry and I know you are physically and emotionally exhausted.  I gave you an incomplete for the course already – I knew there was some good reason to not see you…
…So let me know what you think.  Take care of your health first, your dad, and then worry about BIO 181.  It will be here for you when you can tackle it well.  No rush.

Sincerely,
Dr. Kosal”

Thank you, Lord, for placing people like Dr. Kosal in my life. I do not understand why this is happening, but I know You are here and You are working for our good…somehow…