Guess who is back: Nope not a Joke!

Well, here I am again at Hotel Northwell Manhasset, stuck in a cozy little room, sharing space with a lively 90-year-old roommate. That’s why I’ve been MIA for most of the week.

The grand hotel entryway!

As I mentioned in my last post, I ended up fracturing my L1 during one of my not-so-graceful tumbles. What I didn’t realize at the time was that my CT scan revealed some other issues that the hospital I visited didn’t bother to inform me about or treat properly. On Wednesday, my rheumatologist went over the results and spotted the problem. He called me up and said I needed to head back to a different hospital right away—no surprise there! I joked with Tom that I should keep a Hospital Bag ready at home for these emergencies, just like a pregnant woman. Honestly, I think I might just do that because packing last minute makes my anxiety soar, and I can’t forget my fan….. the rooms are freaking hot.

My trendy Hospital bag…. Last name labeled on it so no one walks away with my shit!

After Tom helped me into the car to avoid another fall on my fractured spine, we were off for my “spa treatments.” I thought the ER would be a quick stop since they took me back to triage right away, but I was mistaken!

They checked me out in the ER and confirmed the CT findings along with some extra fun surprises. Turns out I’ve got a nasty kidney infection (probably from my meds), which has made my blood acidic and all sorts of messed up. Because it’s so strong and determined to wreak havoc on my body, I need IV treatments as the first step… hence my stay at the hotel. And, of course, my spleen is swollen again! It’s back to the usual chaos with my sarcoid meds… it’s like playing medicine roulette!

Reality- looking hot…. Don’t I know it 🤦🏻‍♀️🤪🤣

I got admitted around 2am on Thursday, at least that’s what the system said, but they had no rooms available. Since I knew the drill about my stay, they ended up moving me and my bed into the ER hallway. Yep, you heard that right… the hallway. It was quite the show, but honestly, it felt worse than trying to sleep in your car at a sketchy rest stop. Anyway, my actual room didn’t open up until 8pm Thursday, so I spent a lovely 15+ hours in the ER. I didn’t even think about taking off my mask with all the coughing and vomiting going on around me! Now I’m on the ortho floor because of my fracture, spine issues, and knee/joint problems from Sarcoid. I’ve got a bunch of things to tackle while I’m here—it's like a “one-stop shop.” Finally getting to unmask, wash my face, and change my clothes in my room felt amazing!

Yummy yummy back to hospital food!

Last night, I crawled into bed, put my head on the pillow, and boom, I was out. After two sleepless nights, my body was definitely ready for some rest. But then, of course, I woke up to some awful ear pain… just what I needed, an ear infection to top off my medical week. I tried to get back to sleep until the 5am medicine/morphine bell rang… time to wake up and face the day.

This situation has really taken a toll on me, my husband, and especially our daughter. Tom was supposed to join my family for a few days at a car show, and I encouraged him to go since I’m just stuck here getting poked and prodded. Plus, his mom is around to help, which is a relief. But being the amazing husband and dad he is, he just couldn’t leave me or the kids behind. I feel awful that he’s missing out on this trip they’ve been looking forward to for so long! Then there’s Ella, who gets both angry and sad when I’m stuck in the hospital. She wants to visit but is scared of all the medical stuff—machines, wires, needles, you name it. We always let her choose whether to come, but it’s definitely tough for her emotionally, and that breaks my heart. I FaceTime with her a few times a day, and even though she pretends to dislike me at home, deep down, she really does love me. As for Briggs, he’s heading back to New York with my mother-in-law after a modeling gig in Miami, all expenses covered—he’s living the dream!

Getting kid makeup and hair did! 💙

Lately, I’ve realized that every time I fall or struggle to walk or get up, it really hits my pride. I feel more and more useless to my family and friends each day, especially when I have to admit I can’t do something.

My girl doing what she loves and having fun!

A big topic in my support groups is how many people around us just don’t get this issue and its complexities. Sarcoidosis of the Bone and Bone Marrow is super rare, not well-studied, and there’s no formal treatment guide. Right now, it’s all about trial and error until more research is done. As this diagnosis isn’t as well-known as cancer, those of us dealing with it often face judgment, with people thinking we’re just being “overdramatic.” But the reality is, this disease is a brutal monster that affects your whole body, causing every part to slowly fall apart…… leaving you feeling helpless.

Some info that can help paint a picture! Every case differs significantly, hence the unknown.

There’s a lot to dive into in this blog, I get it! Sorry for taking you on a wild ride today. Writing here helps me sort through this shit show. If it weren’t for this blog, I’d probably feel like I’m stuck in a soap opera.

As always, a huge shoutout to my friends and family who have been supportive. I get little surprises, photos, and memes every day, which are just awesome and keep me motivated. Here’s to moving forward, right?!