It’s June 1st and i’m still tired. Who woulda guessed. I doubted that it was REALLY from my iron, and started getting to bed abnormally early, stopped taking any medicine that had a possible side effect of drowsiness for like 3 days (against doctors orders… 0/10 recommend. definite “bad patient” move.), and even tried ‘shaking’ the sleepiness by doing my best to act like I just wasn’t. But, alas, here I am. June 1st. As zombie-like as ever.

I continued my B12 shots through the month, I believe I got 4 (once a week), but didn’t notice a difference because the lack of iron is overwhelming. BUT, in GOOD news, this month our hematology appointment got moved up from July to June 3rd! Thank you everyone for praying! As of May 5th that was still a ways a way, but I’ve waited my turn and on Monday I finally get to go in for a consult. Yes, a consult. That means they’re not even going to treat me yet, I just get to go in and talk about it, but hopefully that leads to iron infusions sooner rather than later. One of the side effects of iron deficiency is itching, and yall, my body is ITCHY. My hands, my toes, my legs, my neck. I’ve scratched myself so hard i’ve left marks, and been so irrationally itchy that my boss actually sent me home from work! It gets read and blotchy, like hives, and itches. (Some of you are probably like, ‘uhh Jaime, those are hives?’ but I promise it’s not haha, it’s the iron.)

Also, with hematology you aren’t allowed to see an adult specialist until you’re 21, so I get to go back to PEDS! I love and miss pediatrics so much sometimes. I mean, when they weigh you in, they have you stand on this cool floor mat thingy that changes color when you step on it?? SO cool!

This month we also took the plunge to try out new formula recipes for my GJ. My motility specialist is apparently a big shot, and had created a special recipe for ultra sensitive systems, which is what i’ve been using the past 6 months or so. One of the ingredients in the recipe is rice milk, which we have to get at sprouts (otherwise we never… ever… ever.. go to sprouts lol). When my mom went to pick some up the other week, she saw these organic protein mixes and got one to try out. It doesn’t have any whey or dairy, like the one we have been using, so it would make sense for it to be easier to tolerate. The hopes with changing formula recipes is obviously to be able to increase my pump rate. But, if anything, we really just try to keep me as comfortable as possible, and thought we’d try to take out dairy/whey and see if there are any tolerance differences.

Here’s the thing though… this new stuff is organic… so it’s green.

I already get my food through a tube. Does it really have to be GREEN too? *barf*

I can’t say I’ve noticed A LOT of difference since switching, but it’s only been about two weeks, so I’m gonna stick it out awhile longer to see if there are any long term effects. Maybe it’ll decrease my daily nausea!

Insurance approved my IVIG treatment, so thanks again to everyone who prayed! It’s amazing how I ask on here for specific prayer, and BAM!

They gave me the option of starting right away, in June, or waiting until July. This was a tough choice, because part of me just wanted to get the six months over with, but the last time I tried IVIG it SUCKED, and I figured it’s probably going to consume the rest of my good-feeling days this summer. So I opted to wait until July to start. This way, even if it strips me of every sweet, hot, July & August beach day, I still get June.

Speaking of the beach, Drew and I have gone to RBDE a few times since he’s been home! YES, YOU READ THAT RIGHT, HE’S HOMEEE! I’ve been waiting for this time since he moved in August 22nd, and it’s finally here! Beach trips out the wazzoo, minute maid lemonade all the freaking time, slurpee runs in the middle of the night, I am here for it! We’ve been having such a blast so far.

This is the first season of my life where i’ve been ultra intentional about being on my feeding pump ALL. THE. TIME. The past few years i’ve been pretty good at it, but it was usually directed by my mama, and my decision of weather or not to bring it with me somewhere was easily swayed by “not wanting to ruin my cute outfit” or “i’ll do it when I get home”. But my weight has been such a struggle these past 4-5 moths that I’ve actually gotten really good about doing it all day long, every day of the week, no matter where I go or what I’m wearing. Which is so freaking hard, and i’m so proud of myself.

(For those who don’t realize this, being on / bringing my pump places isn’t as easy as just connecting it to my GJ. It’s nausea, it’s heavy, it’s a wire that pulls and gets caught on everything it can. It’s not just a simple connection, it’s the epitome of frustration.)

So, all that to say, I used my pump ON the beach for the very first time last week! I’m still figuring out the kinks (do I keep it in a cooler? Will my actual machine do okay in the heat? How to keep it sand-proof?) but the first time went okay! I’m thankful for a man like Drew who’s so patient when it comes to new challenges with my health. He always faces them head-on!

The strangest part of it all may be how vulnerable of a position it puts me in. I mean, I’m already in a bathing suit three feet away from the strangers next to us.. now i’m that weird girl with a wire coming out of her torso? It’ll take some prayer, and some getting used to.

I am so appreciative of every one of you who prays, texts, calls, and messages.

Thank you thank you thank you.

Prayer requests :

To get approved for iron infusions at my hematology appointment this coming Monday (6/3)
Nausea
No migraines (when we start IVIG in July)
Overall comfort