The Post Infusion Update, Yo

Overall, I haven’t felt any kind of immediate reaction to my 3 day infusion, unless you include MORE PAIN. (ugh!) 

I HAVE been able to go home each evening after the infusions and sleep very deeply and restfully for over 4 hours!! 

(Huge score and LOTS OF GLITTER)💛

However, the pain is typically the exact same or even WORSE after leaving the Clinic after the infusions.

Overall Pain Update from Head to Toe: 

1. Experiencing 24/7 deep aching pains throughout my back/shoulders/neck 

2. Increased pain in my lower back/sciatic nerve region (which then runs down my hamstrings and makes walking, standing, and sitting very uncomfortable 

3. Intermittent sharp stabbing/electrocuting pain running from my upper armpit down through my tricep and elbow area 

4. Relatively consistent “weakness” and “heavy” feeling in both hands and legs due to some numbness 

5. High pressure/tightness in my hands (feels like they are about to explode — if that makes sense? -- YIKESS! 

6. Currently have only about 2-3 mouth sores but the past 2 weeks I’ve also been dealing with extreme “sluffing” of skin from my cheeks… almost as if the inside of my mouth is peeling.

** I am consistently picking dead skin from out of my mouth and from off my tongue (I know... TMI! DISGUSTING) 

UNTIL NEXT TIME... I promise, I'll just be GETTING UP! 

Operation: Kill Vinny: Phase 1, Day 3

Well, friends..... as you know, Vinny and I are having a pillow fight again but he cheated and filled his pillow case with freaking bricks. 

⚠️⚠️ PSA: NOVEL AHEAD!! ⚠️⚠️ 

Summarized Version: 

🎶 I’m still alive, but I’m barely breathin’ 🎶 

Let’s set the scene of how things have been going this week: 

Once upon a time, I laid my little head down at 9:30 PM with plans to “rest rest rest” just like doc had prescribed..... and before I knew it, my phone read 5:33 AM and my eyelids had yet to close.... the only ‘rest’ I felt in those 8 hours were the 2 milliseconds it took to blink every now and then. cool. 

You see, Vinny decided that 9:00 PM was a fantastic time to begin using my rib cage as a trampoline that caused a beautiful domino effect leading to extreme muscle spasms around my rib cage, down my spine and up my neck! 

Again, pleasant. Thanks, Vin. 

Little Vin was also confusing my heart for a punching bag and wreaking havoc with my heart rate, causing some fun sporadic heart palpitations... (which of course is a joy to have while trying to get to sleep! Not to mention adding an additional level of anxiety if I'm having a heart attack or stroke....?!) 

NEXT, our little Demon Friend was strumming my nerves like a damned guitar.... shooting pains down my arms to my fingertips and running up and down my spine. 

Overall, a pain filled night.... and morning! (Aaaaand generally what the last 7 days of my life have been like.) 

Oh! And I nearly forgot my favorite part.... I can’t eat. Yep, minor detail. The ulcers are back with a vengeance and they sure do like to bleed!! I’ve invented a new diet called “Anti-Bloody Mouth” where you find the softest, most bland, boring, tasteless food.... and you eat it! Very simple. 👊😀 It’s going great so far!!! 

But! Let us move to my GLITTER LININGS. Because (of course) without sleep, I gained another 10 hours of productivity!! What a blessing ✨💋

1. I had the opportunity to take a bubble bath at 5:00 AM.....because.... why not? 

2. At 6:00 AM, the fridge is pretty much FREE GAME and for once, I found a few GEMS... considering my mouth is full of bleeding ulcers and finding yummy but soft snacks has been VERY difficult. 

3. I organized all 4,569 photos in my camera roll into 17 very specific folders. 

4. Took a deep dive into Pinterest and invented a completely new definition of “falling down the rabbit hole.” 

5. Pondered life and solved all of the worlds racism, sexism, and whateverelse-isms with one profound phrase: “Treat people with 

kindness” (Just kidding, I didn’t come up with that.... Credit due: Harry Styles) ✨💋 

6. And lastly, I’ve had a lot of time to thank God over and over again that I was born with this mind and this will to FIGHT.... and to NEVER give up. 

I can’t lie and tell you I haven’t had a few dark days (Otherwise known as my "Low Valley" days) but my sunny days and "High Mountain" days are filled with gratitude and love!! 

I’m blessed to have this body that fights so hard for me and I know someday these trials will all make sense..... 

Until then: I’LL JUST KEEP GETTING UP! ✨💋

Thank You

Thank you. 

Thank you for being you. Thank you for being there for anyone who may need help. Thank you for your selflessness. Thankful for you being here for me. Thank you for your physical support. Thank you for (A TON) of emotional support.

Thank you for helping me with doctors and scary appointments. Thank you for looking me straight in the eyes and never once blinking or looking away as they pull another sample from my spine. Thank you for being one of the first faces I see when I wake up from surgeries and procedures. Thank you for holding my hair back as we both kneel in the hard tile floor. 

Thank you for sitting on the toilet at 4:45 in the morning to talk to me while I take a bubble bath because I just can't sleep. Thank you for your patience as my mind is slipping further away. Thank you for loving me in the way that I need to be loved right now. 

I’m sorry that was a novel.... I guess I could’ve just kept short and sweet and said all of those same words by saying: 

THANK YOU FOR BEING MY MOM!!! 

Phase 1: Operation EVICT VINNY

Vinny has been feeling pretty attention deprived over the last 9 months..... so he flew into town to take a quick visit the last 2 weeks.😡

(For those of you just now joining this journey: The viral infection in my spine has been named Vinny.... just FYI) 

Luckily, my close friends at the Mayo Clinic know what’s up and we’ve officially launched: 

“Phase 1: Operation EVICT VINNY.” 

Today, we blasted Vin with a massive dose of Anti-Viral, Anti-Inflammatory, andddd the “güd stuff” 😝 I’ll be visiting with my Mayo Mates for the next 3-days to try to drown him out!! 

For now, my neurologist is attacking Vinny with a very proactive attitude and and is very happy I came in (so we can put a STOP to this cycle!!) 

We are ahead of the game on this one, guys!! 

Never fear. This one isn’t even knockin’ me down.... 

Tired

I hurt  

And I'm always tired

Inside and out

I'm tired of being sick and left out 

I'm tired of being a default choice 

I'm tired of resenting family 

I'm tired of not being taken care of 

I'm tired of feeling like an inconvenience 

I'm tired of trying sooo hard to get attention 

I'm tired of trying to feel wanted 

I'm tired of feeling like I'm not the girl for you 

I'm tired of trying to convince myself I am 

I'm tired of trying to be the girl I think you want 

I'm tired of saying I'm fine when I'm clearly not 

I'm tired of being unhappy 

I'm tired of feeling alone in a full room  

I'm tired of the pain squeezing my heart daily 

I'm tired of sobbing alone in bed 

I'm tired of being this me 

I'm tired of life 

I'm just tired.