Joey, Just Joey

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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

Hey guys! Boy! Have I missed you guys and have so much to catch you up on! I won’t do it all in one blog…what fun would that be?

Looks like it’s been five years since we spoke last, 2015. May have been one of my sickest years. I guess that’s what initially pulled me away from my blog. But, I’m back! Better than ever!

If you read my updated about me, you probably have the gist of me…or do you?

I will be sharing about my ongoing health challenges, me and Jared’s adventures, wedding (Tyler & Kelsey’s 😉…wait…we’re you thinking MY wedding?), all of my kid updates, lots of pics, and a little bit of crazy mixed in.

Thanks for checking out my first NEW post! I hope you subscribe and check out my future posts! I can’t promise they will always be off the hook amazing, but I can promise you a chuckle or two.

Can I tell you how much I get annoyed with MYSELF and my throat clearing? I wake up EVERY morning and cough and clear my throat for at least 45 minutes. It makes me crazy! This is my life!

So when you have systemic scleroderma and ILD (Interstitial Lung Disease) things (mucous-gross…sorry!) sit in your lungs and are hard to get out. Mornings are a real treat for me and everyone around me. It happens at other times of the day too, but morning are the worse. And, to go along with it…there is a scleroderma cough too. You can imagine, I am a blast to sit and watch TV or a movie with.

Imagine, the room is quiet, TV is one and the throat clearing starts. Honestly, I can feel the annoyance in the room. I hate it. I know that my family hates it! I can feel the tension build. I can see out of the corner of my eyes…the fingers tapping, the single foot shaking…all in an attempt to not say anything. After all, everyone knows I can’t control it. Or do they think I can? I am offered a glass of water. And then hot tea. That’s nice and all…but won’t help my clear my lungs. I try to hold it in. And then I burst out in a coughing fit. I can’t hold it back. Do I say something to them? No, I try to play it off. It’s like trying to cover up vomiting mid conversation with a smile. Doesn’t work. THIS IS MY LIFE.

In other departments of my life, Tyler & Kelsey’s graduation party was yesterday and it was perfect. It was so nice to see all of my effort come together in a beautiful day filled with family and friends to celebrate our graduates! And…we got some great photos. Miracle of miracles…my boys even let the photographer take photos of us together. Like I said, perfect day.

In other exciting news… I had a blog published by The Mighty! I am both honored and ecstatic! I will be smiling from ear to ear for quite a while! Thank you to the folks at The Mighty!

Lastly, today is Father’s Day. So, Happy Father’s Day to all of you dads out there and to all of you moms that are both moms and dads! I salute you! Enjoy your day! I am off to Longwood Gardens for a stroll around the gardens.

Woohoo! My life is a blog! Love and hugs to you all!

Hello all! Well, yesterday was an appointment day at Penn. It was as I call “Lung Day”. I had my PFTs – Pulmonary Function Tests, my follow-up pulmonologist appointment, followed by some labs. It ends up being a long day for me since it is in city and frankly….traffic sucks.

But, let me back track a bit. Do you know I have two dogs? Nibble and Chocolate.  Cute, right? Yup! Adorable. But for whatever reason over the last few months, they have turned into mischievous little a-holes. I love them to pieces. Don’t get me wrong. If anything happened to them, I’d be sick. lol…well…more sick. Up until now, they have been the easiest dogs ever. About 6 months ago, I got rid of their crate. I’m hardly ever out. And if I am, someone is always home. So, we took it down and stored it. They handled it like champs. Until now! We get home about a week ago, they have created their own buffet in the mud-room. They drug out a case of Caesar’s dog food and ripped opened the box and removed individual containers and helped themselves. Let me shed some light on this. There are days that we serve them this same exact food, cut neatly into squares on a plate and even warmed, and these little divas won’t even touch it. On that day, that ate through cardboard and plastic to get to it – when they had their own food on a plate and a bowl of Blue Buffalo in a bowl also in the same room . SO THEY WERE NOT HUNGRY! JUST BEING A-HOLES! Along with that treat, they had ramen noodles. I mean what dog buffet isn’t complete without ramen? And, they even drug across the floor the 5 pound bad of epsom salt I had bought to make bath bombs and ripped it open – just for SHITS and giggles I guess. NO REALLY!  We looked it up to make sure they weren’t in harms way. Epsom salt ingested by dogs – yup causes a laxative effect. WTF?! So – one time thing right? And you ask, how long were they alone? They were alone for about 2 hours. OK – so back to lung day – they were left alone for 10 minutes in the very same room my mom had been sitting with them in all day while she was working. Three words – STRAW CAMEL BACK. My dearest cute pups tore into the graduation decorations that I had been prepping over the past few weeks to save myself last-minute work. Deep breathes. Disclaimer – No cute puppies were injured in any of the aforementioned incidents. Good thing they are cute!

Any-who… Lung Day. Don’t you know I just sent back my oxygen two weeks ago. It was one of my rebellious moves. I get into moods sometimes when I just don’t want to be sick anymore and I want to rebel. I was sort of it that mood when I had my tube pulled. It can get that drastic. Does anyone else with chronic illness get like this? I just get to the point that “I am over that oxygen on my face!” or “I am so tired of dragging an IV pole around!” I can’t imagine I am the only one. Since I am so hard-headed and sent it back…now I need to get sleep tested again! Have you ever done a sleep study? The one I had to do to get the oxygen at first was in a hospital. A sleep study has to be the worst nights sleep ever. Even if you take a sleep aid, you won’t sleep. You are harnessed with so many wires you feel like a marionette. It’s like “I’m a real girl!”

You are a puppet of the sleep people. And to add to all of that – as if that isn’t enough, you are being listened to and watched!! SUPER CREEPY!! BUT – since we know for a fact that my oxygen does this, I lucked out and don’t have to go back to the hospital again. That’s a relief! I get to do an overnight sleep study in the privacy of my own home. They will all come here and watch me….just kidding! Wouldn’t that be awful??? Actually, they will probably just drop off some type of pulse ox equipment that will monitor my oxygen level all night. That will show the dips and will be proof enough that I need the oxygen to come back and then voila…oxygen will be coming back any day. I got a small break though. I have to sleep on oxygen. Not a CPAP. It’s not apnea. My oxygen level drops dangerously low while I sleep. Therefore, I sleep with an oxygen cannula in my nose.

I have what is called an oxygen concentrator next to my bed. It is huge. Its like the size of a big guitar amplifier…lol. It makes the oxygen for me. Now, the next step is I am having a full exercise test done to see if I need to wear oxygen during my awake time while I am up and moving around. This is a possibility since I get so winded and also dizzy when I am active. I will keep you posted on that. My PFTs showed some things stayed the same and some things decreased. One of the things that decreased in my lung capacity. I am taking it all as it comes and trying to just stay positive. This is a busy time is our house and no time for hospitalizations or depression. So…I will no stress about it for now.

Speaking of busy times – One week from today. Tyler and Kelsey will be walking the stage and receiving their high school diplomas. I am so proud of them both. It is a big accomplishment and I am so honored to have been a part of their high school journey – late night essays and projects included. We love our kids and wouldn’t trade one minute of any of it! Two down, one to go! Next year, Jake will graduate from high school. I can’t believe my baby will be a senior this year. I love them all so much!

Looking forward to the graduation and the party and then on to Jake and Tyler’s birthday’s and then in July, Kelsey’s birthday! Busy times in our family. And like I said…I wouldn’t trade one second of it! And then on to my favorite week of the year – our family’s annual trip to the shore.

Woohoo! My life is a blog! Love and hugs to all! Continue reading →

Well…last week started just like any other week. And as far as most could see, it was. But, to those close to me, it was not at all “a normal week”. I was going about my normal tasks, however, I didn’t have my normal body strength. Let me tell you more about what I am now calling the week that I “lost time”.

Last week was a big week. My sister-in-law, Lisa, was getting married. I was so excited for the BIG day. I even had a part in the wedding. The rehearsal and dinner was on Thursday night and the wedding was on Friday. Thursday was an especially busy day for me. Kelsey had an appointment for a physical and immunizations for college for the fall and the dogs had a vet appointment for their shots.  My mom sensed the “I was a bit off” and decided that she would drive me to these appointments. Thank God she did!

Everything I am about to tell you is not from my memory…NOT ONE SINGLE BIT! This has all been told to me over the course of the past week, a little bit at a time.

On Thursday, my mom and I took the dogs for their appointment and then brought them back home. No clue. My mom just now told me that we went back into the room with the dogs for their exam and their shots. Apparently, I spoke intelligently to the doctors but I was tired. I started to get light-headed and went out into the waiting room for the rest of the visit. My mom said I looked exhausted and drained. Even now, as I type, I am still finding out facts about my “lost time”. This has to be the scariest thing that has ever happened to me.

After coming home from the vet, we left to pick Kelsey up from school for her appointment. I went into the doctor’s office with Kelsey. Once again, I spoke intelligently to the doctor, asked questions, and still…no recollection of the visit, the doctor we saw or anything about the appointment.

When we got home, I went right to sleep on the sofa. Tim reports that I slept for almost 2 hours. When he got home to pick me up for the rehearsal, I was asleep and wouldn’t get up. When I finally got up and realized I was making us late (we missed the rehearsal), I was very upset and crying. NOPE – don’t remember that either. I don’t even remember what I wore that night. I asked Tim – he’s amazing and I love him but he told me something black and white and a long sweater. Hmmmm….I know the sweater but was it leggings, a skirt, pajamas (I hope not!). We made it to the church and I cried right away because I felt bad I had missed the rehearsal. This is not a trait of mine! I am not much of a crier – and definitely not a public crier! What the hell is going on? Imagine all of this…I am finding this all out over the course of the last week – and even in the last five minutes. People telling me what I did and showing me texts I sent and it is as if I am hearing about someone else’s life. What is happening?

We went to dinner, no idea what I ate or where we were. In fact, Tim brought me back to the same restaurant this week. I went to the salon where I had my hair and makeup done for the wedding for a hair cut (they must have made an impression because I scheduled an appointment and it is an hour away). I walked into the salon and people were calling me by name and asking about the wedding. I didn’t know any of them. We went to the restaurant after, not one thing was familiar.

I know, you get it – I don’t remember a damn thing! But – do you get the extent of this? I will wrap up by saying the next day was the wedding. I don’t remember anything from that day either. I went and had my hair and makeup done with Lisa and the girls. Guess what I did after my appointment? I climbed into Tim’s SUV, next to my wheelchair (oh yeah – I had to use my wheelchair for two days because I was so unsteady!) and went to sleep! I went to sleep after having an updo and my makeup done in the back of an SUV, next to my freaking wheelchair, in a parking lot, with the back hatch open!!! Whether you know me or not, this is not something I would do! This isn’t something any woman would do!!! Do you get the extent of my “F’d upness?”

Ok – so fast forward to yesterday. After hearing all of the stuff that I had done and not known about – I thought it may be time to report this to my doctor. So, I did. She suggested going to the ER. So, I did. I had a slew of blood and urine work. I’m not pregnant! That was a close one! What a relief! I had a CT scan and an MRI. No tumor or full stroke. I need to follow up with the neurologist next week. But with the symptoms, it is likely that I suffered a mini stroke or a TIA {Transient Ischemic Attack}. This is harder to physically diagnose but the neurologist should be able to shed more light.

So, for all of you people out there doing drugs and drinking to get that feeling I just had – get the hell out of here!!! What is your problem??? You could not pay me to experience that again for five minutes. Appreciate the here and now. You never know how long you have to live in THIS MOMENT RIGHT NOW! ENJOY IT! LOVE YOUR LOVED ONES! LIVE LIFE TO THE FULLEST!!

To my mom for always willing to drop everything to go or do whatever it is I need. And most of all to Tyler, Jake and Kelsey for being the reason that I will always come back. I love you all!

Woohoo! My life is a blog! Love and hugs to you all!