hello hellooo!! ahhh guys! the fact that you’re here makes me feel SO loved and cared for. thanks for clicking :)

in complete transparency, i don’t have the brain power to spice this thing up too much so i’m just gonna dive right into the good stuff!

july

july 15th i started my first round of ivig infusions at johns hopkins. if you’ve been around for awhile, you might remember ivig from LAST summer when i did a trial at mayo in JAX, and if you have any idea what i’m talking about you probably just made a face and thought “oh, crap, that sucked the first time!”

well, after some heavy persuasion i agreed to give it another try at hopkins, who swore their protocol wouldn't dare give me the same reaction i had to the first round.

on july 15th (month 1 : day 1) i wrote “my abdomen / fingers / feet are all pretty inflated, which were not sure why? but we’re assuming i was dehydrated before and now that i’ve gotten all these fluids my cells are retaining the majority. it’s really uncomfortable but no one seems concerned so i’m sure it’s fine.”

MAN i don’t even know how to explain what happened after that. i was able to get infusions on days 1, 2, and 3, but the morning of day 4 i woke up with a type of pain i’ve never experienced before.

it felt similar to a bruising, or maybe a bad sunburn, but it was everywhere- especially my neck, lower back, ribs, and face. as of thursday (month 1 : day 4) i was up 11 (ELEVEN) lbs from MONDAY (month 1 : day 1).

YEAH. JUST THINK ABOUT THAT. I WAS RETAINING 11 FRICKEN LBS OF WATER.

we went into the infusion center, who sent me to the er to get worked up and checked for aseptic meningitis. needless to say, they canceled my thursday and friday infusions (this same thing happened when i took this drug at mayo). after a full day, i finally got put on lasix, lost like a gazillion cc’s of water in the span of 2 hours, and then everything else hit. all the symptoms i got when i tried ivig at mayo- the migraine, the sweating, the vomiting. the worst experience of my entire life was literally happening again.

my gi doctor, who’s conducting the trial, came to the er to see me and said he didn’t feel safe continuing me on ivig, but, (because i’m a doofus), i told him i wasn’t ready to give up, and he needed to figure out a way to make it work.

august

leading up to my august infusions i thought of the whole thing very robotically. i wasn’t scared, i didn’t really care, it was just inconvenient. that’s pretty unlike me, to be able to detach my emotions from a situation like this.

i told my gi he had to make some changes before my august set, so he gave me lasix for the week and sent me to a neurologist for a migraine med. the neurologist was great, prescribed me 2- a “preventative” and a “rescue”, and recommended i don’t continue ivig infusions haha.

if i was smarter, i would’ve taken these two very intelligent men telling me to stop treatment as a sign to like….stop treatment… buuuuut i didn’t.

august 26th was the beginning of month 2, and it was an exact replica of month 1. the days matched up exactly.

the fluid retention began day 1, began vomiting day 2, exhausted and miserable day 3, and day 4 i felt like my entire body was shutting down.

i think i’ve been holding onto the hope that THIS is the ONE treatment i haven’t completed, so it MUST be the one God’s going to use to heal me. but, it’s crystal clear to me now that this just isn’t it. i’m grateful for everyone who prayed over and through this process, but it’s time to close this door and wait for the next one to open.

prayer requests

• that NIH will get back to us with news that they’ve accepted me as a new patient (!!!)

• for my migraine-turned-headache to finally go away

• that i’ll be able to remain hopeful for a cure rather than accept the treatment plan of “palliative care”

• the all over itching hasn’t resolved itself

• that my hopkins doctor will keep up his morale with having me as his patient

• for my day-to-day endurance

• for my dad as he begins his transplant this week

• for my mama to know that nothing she does for us goes unnoticed