I Missed You <3

I never knew it was possible to miss someone you had never actually met, but that is always how we felt. The first thing we said upon embracing each other for the first time was, “I MISSED YOU!!!” ♥️

I got to see my Em!!

While we lived on opposite sides of the country most of our lives, this girl been with me through it all– my first real spoonie friend! In the past 4.5 years we’ve been friends, we’ve spent countless nights on the phone, FaceTiming IMG_4268until dawn, supporting each other through life’s craziness & trying to make sense of the world. We were both so sick & oh so scared when we met…dealing with mysterious & debilitating symptoms, overwhelmed as we collected diagnosis after diagnosis. We spent hours talking about everything & nothing at all, often staying on the line with little lullabies or reassuring words until the other was asleep.

Crazy to look back & see how far we’ve come! I truly don’t know what I would have done without her all those years.

This girl sees me- even when I try so hard to hide inside myself. She makes me laugh with her sarcasm & morbid sense of humor. She holds me & reassures me when I’m sick, telling me not to be embarrassed. She reminds me it’s okay to break down sometimes & loves me right through it. She makes me feel accepted, wanted- completely safe & loved.

I can’t help but smile when I look at the beautiful young woman before me. Em, I’m so beyond proud of everything you’ve overcome & the person you are today. You inspire me & I am beyond blessed to call you my friend & little sissy 💕 My heart is so, so full!

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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…

Iron Infusion #2

Dr. Wang recently started me on IV iron infusions and is also considering IV folate for the future.

My blood counts have always been low (I’ve been anemic & deficient in multiple micronutrients for a while), Screen Shot 2017-11-09 at 10.27.22 PMbut levels dropped really dramatically in the past two months. My hemoglobin went from 11.0 to 9.6, iron went from 7 to 2, folate dropped from 6.1 to 3.2, ferritin went from 6 to 4, B12 dropped from 319 to 220, etc.

I had my first infusion last week. I was a little bit itchy during and sore after, but otherwise it went really well.

Today, I had my second iron infusion and all I can say is, yikes!

5.5 hours, 2 episodes of anaphylaxis, ice packs head to toe, nonstop coughing & dry heaving for almost an hour, a few mini candy canes, & lots & lots of IV fluids, steroids & Benadryl later, we are finally home!

Last iron infusion was so calm & uneventful…but I’ve been in a weird systemic reaction all week & today my mast cells were just not having it. My hematologist kept coming in & looking at me with stern concern & my poor mother was so nervous…but the nurses were beyond amazing & sooo quick to pick up on things, even before I did! I Spent the whole time laughing & joking with them, making the best of things as I always do…even resorting to communicating through funny faces when anaphylaxis stole my voice.

Life is what you make it, & times like this can either be an ordeal or an adventure. I’m choosing to find joy in the little things & praising God through it all. Circumstances like this are out of our control, so we may as well laugh out loud as we hold on for the ride.. 🙂

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…

Rest In Peace

As the morning light peeks through the window and you stir into consciousness, sometimes for a fleeting second, you forget.

But you are jerked back into reality as your heart begins to pound– head spinning, choking back acid, muscles aching, nerves burning.

Most days, you lie there for a while, trying to breathe through the pain and gather enough strength to go on about your morning routine.

But a big part of you wonders why you bother to get up at all.

You drag yourself from bed to fight the same battles each day. No end in sight, simply running on a treadmill uphill, hoping to maintain an unfortunate baseline.

It all just becomes so, so very tiresome.

Your physical health continues to deteriorate as your spirit is crushed under the weight of a crumbling sense of self.

You know there are people you would let down if you were to leave. There are those who would suffer if you were to suddenly cease to exist.

So you press on, trying to ignore the fact that you’re trapped– fake smile, one foot in front of the other.

As time passes, your increasing inability to keep up with the world pulls you deeper and deeper into the pit of isolation.

People grow up, get married, move away, retire, or simply forget your existence completely.

You watch as everyone you love fades away.

As night falls and you are left alone with your thoughts, your chest aches with the thought of how alone you have become.

You feel the sting of being unwanted, unneeded, outgrown, forgotten, abandoned.

But as the night turns to dawn, you realize there is no one left to let down. Or at least, there is no one who would have life ripped out from under them if you were to no longer be.

Your body is broken– your very being exhausted and worn– but you close your eyes and let out a sigh of relief.

Tears gilde down your cheeks and a smile slowly creeps across your face as you realize you may finally rest in peace.

 

[Just some musings from a brain and body currently consumed by painsomnia. No worries– I’m not going anywhere anytime soon. Keep fighting, guys.. ❤ ]

Spoonie Party!

I had the BEST time with these lovely ladies today!  I cannot even begin to express how needed this get-together was…not just for me, but for all of us.  Spending time with people who truly get it– talking, laughing, commiserating, joking, and just BEING, no strings attached– is truly the best medicine.  No one flinched when someone whipped out a nebulizer or strapped on a neck brace or flushed their port or tripped over their tubing. Laughing, we raced up to help each other (usually just adding to the chaos…lol, but the thought was there).  It was the first time in a long time I felt genuinely happy.. ❤

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! ❤

The Reality of Chronic Illness: Prom Edition

Just realized I never shared this! Check out my amazing spoonie sister Em’s blog post about our experience attending Duke Children’s Hospital Prom…and all that went on ‘behind the scenes’ to prepare and recuperate… 🙂

Through the Peaks and Valleys

Last Saturday (April 22nd) Duke Children’s Hospital held their very first PROM! I had the amazing opportunity to not only attend but I got to attend with 3 fantastic ladies that I have gotten to know over the last year online! We share quite the list of medical diagnosis’ and life experiences.

Pre-Prom Prep!

Prom prep started about a week before the actual prom. Cancelling doctors appointments, scheduling doctors appointments, ER visits, lots of medicine, and rest rest rest!

Pre-prom prep (IV fluids, Nutrition, pain meds, steroids and prayer!)

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While we got ready for prom before getting our dresses on and doing our make-up we pre-medicated and talked about how much we get it. There was no need to explain anything or feel ashamed because they live it too! (Though I so wish none of us had to, it’s nice to not feel so alone).

We all meet online in…

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