Thank You

Thankful for amazing friends who truly “get it.”

This guy knows me– the good, the bad, and the downright crazy– and calls me his friend anyway.  I don’t have to put on a mask nor try to justify myself at every turn.

Whether sending me memes or bringing me roses from his garden, he is always there to remind me why life is worth fighting so hard to live.

In many ways, we’re very different but in the ways that matter, we are eerily similar. He knows firsthand what it’s like to live in a broken body and is always up to commiserate. Our conversations are never dull, and we never run out of things to discuss.

He understands that social interaction is exhausting sometimes and doesn’t get upset when I don’t text back for days on end. He meets my absence only with care and concern, letting me know he gets it and is excited when he finally does hear from me.

We roast each other nonstop. An outsider might think we hate each other. Or that we’re a married couple. Or perhaps both.

He is one of the very few I look forward to seeing, even on days where I feel like crap mentally and physically, because I know I can just be. He reminds me that he loves me the same on my bad days and somehow manages to make such days a few shades brighter. I always leave our interactions better off than I came.

He makes sure we stop for rest breaks on long treks up the hills and doesn’t make me feel self conscious about the need to do so. Even though he pokes fun, he understands my hatred for stairs.

He gives me props where they are due, but isn’t afraid to call me on my shit and hold me accountable.

He appreciates my weirdness and is always down to hear of my crazy misadventures. He shares his stories, too, not bothering to hide the fact that he is just as quirky.  We know that we don’t have to hide our flaws and struggles from one another, but instead are a team in the brokenness. One of our many unspoken understandings.

He is an endless fountain of encouragement, compassion, and really, really bad humor.

Thank you, Justin, for being you.. ❤

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Forever Romanticizing The Past

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Why is it that even the best and most beautiful memories are so painful to recall?  Life was throwing curveball after curveball for that girl in the picture, but her smile is genuine.  She lived as if she had nothing left to lose, and while that sometimes meant lingering atop tall buildings, tears streaming as she smiled at the thought of the end– somehow THAT feels more desirable than….well…THIS.  And while I know my mind is just playing tricks on me, I still find myself wishing I was back in that period of my life. My irrationality frightens me sometimes…

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.. 🙂

Cuddles With Terd

Throwback to cuddles with my sweet Terd.  I love his fuzzy little self so much!  He and his sister, Squirt, missed me a lot while I was in the hospital that week and they needed lots and lots of hugs and kisses to make up for my absence. You can hear Squirt in the background demanding I give her a turn on my chest, ha ha. Miss them!!!

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.. ❤