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Hi friends! Is it just me or do I have any other friends awake at 4:22am?

Been up since 3:30am, WIDE AWAKE! So thought I’d talk to you guys. Why do you think this happens to you? For me, it’s definitely my brain right now. Being a severely chronically ill person is not an easy walk in the park; even on the most gorgeous days. You know, I realized yesterday, I missed the entire summer season. Labor Day is this weekend. No hot dogs or burgers for me, it will be fresh grilled (more chilled) feeding tube formula. This will be an adjustment again, but if it keeps me from aspirating and the havoc it causes…it’s definitely worth it. Any other tubes out there? Would love to hear some of your tips and tricks! Please comment below and share.

I always blame my overthinking as the culprit for these nights. As soon as the room is quiet (as much as it can in a hospital), my brain checks in for its overtime shift. Crazy thoughts too! Let me tell you, I worry about worrying over things I should worry about. Like am I certifiable? worrying about mistakes I’ve made in my 53 years of life. The only that really gets me are the ones involving my sons. Times I wish I stopped folding laundry and went and colored right then. The clothes would wait, right? But I yearn for their youth sometimes. On the flip side, I cherish our relationships as adult to adult child too. There is nothing better than being their mom. Although, they have some steep competition making a debut in January. I am going to love my grandson with all I have.

Sometimes I think my anxiety for the most part is like FOMO (fear of missing out) due to my health. I missed last thanksgiving at Tyler & Kelsey’s house because I was so sick. And it was their first time hosting. Broke my heart in a million pieces. But let’s get to the BIG HUGE subject at hand….

I’m sick. Sicker than I’ve ever been. I’ve actually been told over and over by staff and guests here at the hospital that my room is so cozy and homey. What a nice compliment right? But in my head, I’ve made this room, home. Survival mode? Who knows? Two months is a long time to be hospitalized. I’ve duplicated some of the things I have at home for it to feel more familiar, warmer. It’s working. My digital frame with all my home pics on it is my favorite and I find myself watching for hours sometimes. It has over 3000 pics of family, friends, past vacations and things important to my heart. I get lost in it.

I dance around the sick part, sorry. So 2 months, sucks right? What sucks more is 4 hospitals and 2 months later, we truly don’t have a diagnosis or any idea what is wrong with me. Which means we are in the “throwing against the wall and see if it sticks stage”. I’ve tried dozens of meds and treatments, and here I sit talking with you guys and not asleep in my bed at home with Peanut Butter, my fur baby, aka my youngest son. How scared would you be if a doctor said, “we’re trying this treatment but it is truly our “Hail Mary”? Like being punched in the gut. I’m afraid of leaving this life, this world and my family, yet I feel like I am slowly going. My mind and gut are preparing while still trying to be optimistic they’re wrong. I mean everything else in my body is screwed up, they could be too. Maybe it’s a defense mechanism to prepare your mind, just in case.

Ok this is getting deep for 4:44. Anyone else have an angel number? What’s yours? LMK below in comments. Mine is 11:11, even got it as part of a tattoo while in California earlier this year, before my life and health turned to, well…shit.

California!!! ☀️ I think that will be tomorrow’s post. My happy place and all of its characters who play big roles in my life and make me so happy. I love California so much.

If you made it this far, congrats and thank you! Please subscribe to my page. Like posts, leave comments. Let’s be friends? I swear the sheer “Joey-ness” will grow on you!!

Let’s make today amazing!

~ Joey

Welcome! You get the picture….

Welcome! After a long hiatus, I’m back, “tubier” than ever. If you haven’t put it together yet, I’m joining the tubie club again next week. I will have my tube placed on Monday or Tuesday. You know the drill, it’s a medical appointment, could be Sunday at noon for all the control I have with that.

So this time, gastroparesis and extreme reflux and aspiration leaving me dependent on high levels of oxygen 24:7 are the big issues. I’ve currently been in the hospital for 8 weeks today. Why didn’t I start this earlier? Hmmm, who knows? Anyway, this is my 4th hospital in that time frame, transfers to a questionably better each time but this time I struck GOLD! This hospital was my choice all along but due to being in acute respiratory therapy each time, time was of the essence and the city trip is a trek. But, I’ve been in the city hospital for 2 weeks yesterday and they are earning their lofty incomes with me. I have 6 teams of the best docs working on a diagnosis and treatment. I had started with aspiration pneumonia, hospital #1 didn’t listen to me and ended up in hospital #2 who kind of treated it but send me home for all of 18 hours, still extremely ill and with a complimentary COVID take home gift. See?…I did win something on this game show episode. A ride back to said hospital with lights and sirens blasting and acute respiratory therapy, I was septic and my oxygen was in the 70’s. And the aforementioned, COVID grand prize. Nothing like COVID on top of pneumonia. This trip = another week. Got home for about 3 days and had to get rushed back to not #1 or #2 hospitals, because duh…they weren’t qualified enough for this chronically ill chic. Enter hospital #3, best out of the three, amazing sweet nurses, docs and staff and I spent 2 weeks there being kept comfortable, and managing symptoms until…Dun, dun, duuun…hospital #4!!!! The skies opens and the angels sang as hospital #3 packed me and my things up at 2:30am and gave me the news of transfer approval and my golden ticket to #4. Let’s just refer to this paradise of amazingly brilliant doctors, nicest nurses you’d ever want to meet and diligent research teams trying to diagnose and fix me via various treatments and tests as #4.

That was a lot for the first post back…you’re kinda up to date as much as I am…by the way I love a good run on sentence. So I’m not grammatically challenged (well maybe, is that a word?) maybe just challenged. We will figure it all out together!

Thanks for joining my tribe! Tell your friends. I’m kinda funny and coping with knee high levels of medical and life drama keeps it entertaining.

Let’s gooooo!!!!

Joey