Happy 23 to Me!

Happy birthday to me; I’m officially 23! 🎉🎈

I got birthday hugs & the sweetest gifts from the amazing College Inn crew!  Tifani gave me this fancy mug & a beautiful candle that smells sooooo good & says “Hello, Sunshine” ☀️ She said I am the most sunshine-y person she knows & I always brighten her day! I teared up & honestly still do thinking about it. And Austin gave me the bright, gorgeous flowers you see in the pictures below! I was so surprised & so happy I was literally shaking. I still can’t believe they did that!

Then I got to spend my birthday evening with my parents & Clyde 🙂 They showed up to my apartment door wearing giant party hats & big, cheesy smiles…which totally caught the maintenance workers off guard when they answered the door, lol. We went to Mellow Mushroom & had some delicious gluten free pizza with onions (my favorite)! After dinner, we went to McDonalds & sat at a booth for hours drinking hot chocolate, just talking & laughing about everything & nothing at all. I am so incredibly blessed to have a family who truly enjoys one another’s company & who can have fun doing just about anything. My parents are my best friends & I don’t know what I would do without them. We are a dysfunctional bunch, but I wouldn’t change a thing.. ❤

And Peter wants to take me to a birthday dinner tomorrow night! We were supposed to see each other tonight, but I was feeling a bit low after some things happened & so I asked if we could reschedule. I am actually excited we’re going tomorrow instead, because, as dumb as this may sound, that means the celebration isn’t over  🎉

I received some really, really sweet text messages & voicemails today that reminded how many people out there truly care & love me, today & every day, even though we may not get to see one another often. I really needed that, especially lately.. ❤

I truly appreciate everyone who helped make my special day so special, both in person & from a distance! I feel the love 😘

Here’s to year 23!!

 

 

 

 

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You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

You cannot save everyone.

And that’s just gonna have to be okay…

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.. ❤