Screen Shot 2018-06-19 at 4.45.18 AMHaving a lot of GI testing done lately. I got my gastric emptying study out of the way Thursday.  Esophageal manometry & 24-hour esophageal pH test tomorrow. Not particularly looking forward to either, especially since we have to travel to Wake Forest Baptist yet again (1.5+ hours).  Apparently we have to drive all the way back early Tuesday morning so they can remove the esophageal pH tube..?!?! I find it ridiculous to travel just for them to yank it out, but alas that’s the rule…

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Clarity

I did something bad, and I feel really guilty about it.  Not guilty about what I actually did, per se, but guilty over lying.  Or, at least omitting the truth and being otherwise deceitful…

Because of severe exhaustion, both physically and mentally, I have been really struggling lately to be an active participant in my life.  And, whether due to injury from 9+ concussions, lack of blood flow to the brain, medication side effects, not sleeping, migraine pain and cloudiness or simply a bad cold or a long night of vomiting, my brain fog has been absolutely debilitating.  Unsurprisingly, this has significantly impacted my academic standing.  I love my major and will study for hours on end, but I cannot seem to retain information no matter how hard I try. My short term memory is laughable, and I just feel totally “out of it” overall.

So…I took some Adderall.

One of my physicians prescribed me Adderall in 2014 to trial for hypotension and chronic fatigue and it worked beautifully.

However, the Adderall I took this time was not my prescription. I bought it.

Yes, I BOUGHT IT from a guy in our apartment complex who I knew dealt drugs. I’ve never done anything like that before. 10 little blue pills for $50.

It was almost as if a weighted, fuzzy blanket had been lifted and someone cracked a window to allow in some fresh air. My thoughts didn’t feel as loud and chaotic. I felt peaceful and calm, yet alert and capable.

$50 allowed me to catch up and succeed academically despite my broken body, saving my semester.

I didn’t experience any negative side effects. No nausea, no noticeable increase in tachycardia, no shakiness, no anxiety.

Those pills pulled me from the deepest pits of depression – both with happiness and relief over finally succeeding and getting caught up with school and the fact that I actually had some energy for once.

Sitting up wasn’t a chore. Writing an email or replying to a text message was no longer a daunting task. I looked forward to reading once again. Homework and studying didn’t feel impossible.

I experienced mental clarity for the first time since I can remember (ha ha, accidental brain fog/poor memory joke). That in itself gave me hope.

I was honestly starting to believe that I’d never be able to think again and that I was somehow past the point of fixing…but this experience has shown me that the person I used to know and love (or at least like, haha) is still in there somewhere. While I may live in a broken body, I am not broken.

I’m not sure if my moral compass was bruised along with my brain, but my feelings of relief and excitement are overshadowing my guilt and shame, at least for the time being.

I still have one left…

Lock Box

A few months ago, I bought a lock box to use on days I’m feeling especially defeated. You set it for a certain amount of time, and the box will not open until that time has passed. There are no loopholes or ways around this: trust me, I have tried. When the urges are screaming in my head and drowning out all logic, I lock away my medicines, razor blades and anything else I might use to hurt myself.

Doing this takes an indescribable amount of self-control, especially in those moments when all hope seems lost.

I don’t know whether to be ashamed or proud of myself.

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.. 🙂