Author: Julz

When life throws us a curveball, we have choices to make. Which is what my week has been consumed with. 

I haven’t felt like writing. I just got a text from one of my friends, Nicky, who wrote, “Julz, no new posts, FUCK. How are you doing?” Lol! I love my friends! 

Things went to shit for me mentally starting last Sunday. I felt so overwhelmed I almost had a genuine, real-life George Bailey temper tantrum. 

What’s a George Bailey temper tantrum? It’s from the movie It’s a Wonderful Life. Click on the YouTube link above if you would like to see what in the hell I am talking about. 

Jimmy Stewart was battling PTSD from World War ll while he was filming It’s a Wonderful Life. It came out while filming these scenes. I am still battling PTSD after decades of abuse from my adopted mother and sometimes feel like losing it as he did.

After my third X-ray, I found out I needed a CAT scan. Then, there was an issue with an antibiotic the doctor prescribed. I would not be approved by insurance. However, I didn’t need it since my pneumonia had cleared up.

Then we had a snowstorm forecast to end all other snowstorm forecasts. Yes, that came from Rudolph. I am sick of winter and staying in for five weeks, and we had tickets with my friend Ann to see Hamilton Tuesday night. We purchased the tickets last March with our theater subscription for the year.

I wanted to go! It was the only thing I’d looked forward to in the last six weeks! This bummed me out; on top of it, I didn’t feel well enough to go to dance class on Wednesday night. What a shitty week for my mentality and creative outlets.

Of course, the weather people were correct this time, and we got 30 inches of heavy wet snow. We lost power for a whole day. It sucked. I was already done being home and winter; without power, I went stir-crazy. I tried going outdoors, but the cold air made me cough too much, and I had problems breathing.

Poor Marty and Ann came up despite the forecast, hoping the weather forecast would be wrong like us. They were out there six times doing snow removal with shovels and our snowblower in less than 18 hours.

Meanwhile, I was on edge, waiting for doctors and central scheduling to call me to schedule the cat scan and to answer some of my questions. 

I fucking hate having to rely on logging into patient portals for messages and checking them 100 times a day. Grrhhhh! I also communicated with my gastroenterologist’s office at Dartmouth Hitchcock—more signing in with user names and passwords.

Everything seemed to calm down after receiving my cat scan results. I was 90% sure I knew what I had and was correct; I have pulmonary fibrosis, most likely from the Humira I inject bi-monthly for my ulcerative colitis.

According to The American Lung Association, Pulmonary fibrosis is In technical terms, fibrosis means thickening or scarring of the tissue. In this case, the normally thin, lacy walls of the air sacs in the lungs are no longer thin and lacy, but get thick, stiff and scarred, also called becoming fibrotic. With this scarring, the architecture of the lung makes it stiffer and is less efficient at delivering oxygen into the blood stream. In addition, the stiffness or fibrosis of the tissue makes it more difficult to expand the lungs. It takes more effort to breathe, and this additional demand of energy or work leads to shortness of breath.

Each time I’ve had a cold or bronchitis which eventually led to pneumonia the pulmonary fibrosis made it worse. It makes sense because any time I did get sick in the last four years, I had an awful cough that lasted for three months easily. 

Funny enough, the only time I didn’t cough for months was when I had covid. However, they also found ground glass opacities, which they now see in the lungs of people who had covid. Oh great! 

According to Wikipedia, Ground-glass opacity (GGO) is a finding seen on chest x-ray (radiograph) or computed tomography (CT)imaging of the lungs. It is typically defined as an area of hazy opacification (x-ray) or increased attenuation (CT) due to air displacement by fluid, airway collapse, fibrosis, or a neoplastic process.^[1] When a substance other than air fills an area of the lung it increases that area’s density. On both x-ray and CT, this appears more grey or hazy as opposed to the normally dark-appearing lungs. Although it can sometimes be seen in normal lungs, common pathologic causes include infections, interstitial lung disease, and pulmonary edema.

Pulmonary Fibrosis is something I am going to have to live with. I was referred to a pulmonologist to help manage the disease. Dr. Levy, my gastrointestinal at Dartmouth, will have to find a new medication to keep me on track with my colitis and stay in remission.

How am I feeling now that the pneumonia is finally gone? At times bad. I feel good when sitting quietly or sleeping; I am not coughing much and have no trouble breathing.

When I try to walk up a flight of stairs, I have to stop two or three times because I have difficulty breathing. It stops me dead in my tracks. I have to wait several seconds before I can continue. The same stairs I used to fly up.

I have massive coughing attacks when I get to the top of the stairs. This happens when I walk too fast, walk up our driveway or work too quickly in the production kitchen. 

This will most likely go on for a long time until my lungs heal, but the fibrosis or scarring will never go away; it will get worse over time, making my breathing more difficult. This will be a lifestyle change for me.

So I have to admit I was scared before the cat scan. Then when I learned more about the disease and spoke to my doctors, I somehow didn’t feel afraid anymore. 

The choice I had to make, as in the title of this blog post, was how to accept this new illness. I started to go down the path of fear, giving myself a prison sentence and grieving my old way of living. I was mad and depressed.

Then, I decided, no, I am not doing that! I am a bad-ass Jersey bitch and will be strong like I’ve always been. I have had to figure out ways to compensate while doing everyday chores and activities with the arthritis pain I have every day. 

I also to be strong at the age of 15 when I was diagnosed with Ulcerative Colitis. I had a severe bowel disease that was so embarrassing as a teen, and all the testing I had to go through was terrible. It was the beginning of playing the game, “Where’s the toilet!” I still play that game today.

I am taking this one day at a time and looking at it as another bump in the road. The next step will be to go through lung testing and pulmonary rehab. The pulmonologist will teach me how to manage my new disease.

When I get this managed, I plan to live my best life, continuing to do the things I love, especially teaching & belly dancing. I will still go places and to shows with Marty.

I will work, go to our farmers market, swim, and walk. I will continue to cook and finally be able to work on my Youtube channel. Things may have to be done slower than in the past, but that’s ok.

I’m mentally in a good place with the support of my family, friends, and you guys. I am a strong as fuck woman because I have had to be, to survive the horrible things I’ve endured; this is no different. 

The good news was that Hamilton was postponed and not canceled due to the snowstorm. We will see it this Sunday night at 7:30. I hope Ann can return and go to the show with us. I have something to look forward to again.

Just like George Bailey learned from Clarence, his guardian angel, I have learned this week that no matter what is happening or changes, It’s a wonderful life! 

The photo that our friend Steve took of a road in the midst of mud season this year sums up my mood today. I feel worn down like I’ve gone through hell and need improving.

Yesterday, I thought things were finally going in the right direction concerning my pneumonia; I got a call this morning that things are more complicated than they thought. Shit!

One of my providers called this morning and told me the radiologist is concerned that my yesterday’s X-ray shows scarring in both my lungs but worse in the left one. No wonder why I am still coughing until I almost puke.

I am to have a cat scan before Wednesday afternoon to understand better what’s happening. There are no tumors, thank God. 

I guess that’s something to be very grateful for. 

The question is…is the scarring from pneumonia or from Humira? In some patients, Humira does cause issues with the lungs when taken for a period of time. Fuck!

The Humira pulled me out of a scary colitis flare-up in 2018 and has kept me in remission. Obviously, pneumonia is a thing that needs to be treated since it could become a matter of life or death. 

The provider also prescribed the very last antibiotic available to treat this. Insurance needs proof from the providers that all other courses of action were taken without success. 

I asked the pharmacist if I could pay out of pocket. The prescription for Xenleta costs $2,000! WTF for ten tablets? 

So I am waiting to hear back from the pharmacist if insurance will cover it after they receive the documentation from the providers. 

I am also waiting for central scheduling to call to make the cat scan appointment for early next week. 

Of course, I updated my gastroenterologist in Dartmouth Hitchcock to keep him in the loop, especially because it concerns the Humira and my inflammatory bowel disease. 

Sigh. That is all. 

Bingo! Marty figured out why I am not getting better with this persistent pneumonia, and it turns out he’s right! 

I’ve been on the medication Humira since 2018 for my ulcerative colitis. It works brilliantly, and I have been in complete remission. 

Unfortunately, Humira lowers your autoimmune system, so I haven’t been able to shake this illness. 

I called Dartmouth Hitchcock, and they confirmed this is likely why I am not improving. 

I must stop injecting until I get the go-ahead from Dr. Levy, my gastroenterologist. 

I receive an injection of Humira every other week; I just got one on Tuesday and started feeling bad again on Thursday. 

This afternoon I went for another chest X-ray since last night was horrible. I couldn’t stop coughing even with prescription cough syrup. I coughed so much that my sternum hurts today. 

My appointment went fantastically. I had my X-rays taken, and the on-call doctor, who is new to the practice from NY, came in to look at the X-rays and speak with me. 

I shared our discovery with her, and she said, yes, the Humira may be delaying my recovery.

She told me sometimes she speaks Yiddish since she practiced in NY. She showed me on the X-ray my left lung was full of “schmutz.” 

The good news was it looked a little better than my last X-ray, which is great news. It completely changed my mindset of hopelessness. 

The on-call doctor was so easy to talk to and very nice. She said I would finish this last course of antibiotics and then come in for a series of X-rays until the radiologist says I am all clear. 

My gastroenterologist will now work with my primary doctor, so everyone is on the same page on my recovery journey. 

For now, I have to be patient and let my body continue to recuperate. I can go out and do things but not overdo them. Plus, I have to rest whenever I feel tired. Okie dokie! 

I am glad to hear that since we have tickets to see Hamilton on Tuesday night at Proctors Theater. My friend, Ann from Jersey, has a ticket and is coming to see it with us. 

So my hubby, who is always by my side, figured everything out. We don’t call him Smarty Marty for nothing!

He was proactive and got the ball rolling in figuring all this out. I am so lucky and grateful to have him and his smarts. He’s been worried sick about me.

I feel like I have hope at last! Happy Friday! ☺️

How do you kill time while you are recuperating and on bed rest? Well, I am going to tell you. The new antibiotic I am on seems to be working. Thank God! Things were looking a little dicey there for a bit.

There are a lot of possible warnings and side effects with this strong-ass medicine I am taking. The good outweighs the risks if it means getting better to me.

One of the warnings, maybe the biggest one, is not to lift anything or strain myself. It can damage or rupture tendons.

Well, that scared the crap out of me and shut down production for the rest of the week. This forces me not to overdo it not only for the five days I am on this medicine, but I will have to take it easy and not jump in with both feet when I am better.

So what in fucks name have I been doing with all this time of rest? Well, since I am tired of the usual stuff after 22 days of sickness, I’ve had to shake things up a bit.

I’ve been reading a bunch of stupid shit on the internet, but one thing intrigued me. How to make your home smell like Williams Sonoma or Pottery Barn. I love shopping in those places, so I decided to try the “recipe” out.

I did a small batch because I hate wasting ingredients. Speaking of the ingredients to make this potpourri, remember in the 80s when potpourri was all the rage?

Well, this isn’t a bunch of mauve and rose-colored pretty-smelling things wrapped in a clear cellophane bag with bows; but culinary items, stables in people’s kitchens. How convenient. This, I could definitely get behind.

I cut a leftover lemon into wedges and threw it in a saucepan along with about 10 peppercorns, rosemary branches, and a tsp of real vanilla extract. I added water to the saucepan and put it on a simmer.

You know what? It smelled like Pottery Barn and William Sonoma! I kept sniffing the house, saying, “Well, I’ll be damned.”

Realtors bake cookies before a house showing so the place smells good. This homemade potpourri would be better, in my opinion.

Everyone doesn’t like the smell of slice-and-bake cookies. The smell is clean and homey. Sophisticated with a scent you can’t quite put your finger on but like.

I got the rosemary branches for my potpourri from when I trimmed dead branches on my rosemary plant in the morning. My friend Marcia gave me this last May when she moved back to France. I vowed to keep it alive.

One side of it was iffy when I got it and is still iffy. I prune away the dead stuff so the energy can go to the healthy side. I talked to my plants and gave them a drink of water. That took about 10 minutes, but it kept me restfully occupied.

I’ve been wearing crazy shit I wouldn’t wear out and isn’t black. I don’t have anything that matches since I got the pajama bottoms from goodwill.

It works and is super comfortable. Last night, I picked out a new ensemble for today. I keep wearing the same things and washing them.

The highlight of my day was waiting for Marty to get home from deliveries and a shopping trip to Trader Joe’s. I gave him a list of things we “needed.”

Things like praline pecans, dark chocolate peanut butter cups, waffles, corn chips, and a bunch of healthy, easy-to-prepare foods while I am recovering.

What I wanted the most was their frozen GF macaroni and cheese. I was craving it. More sick cravings.

It can be baked in the cute little tray, but I microwaved it so I could eat it faster. I did add a little milk because I like it creamier.

The thing about macaroni and cheese, whether from a box, tray, or homemade, is that I always put ketchup on it. And it has to be Heinz. Before you say, “eeewww,” I assure you it’s delicious.

I’m not sure if this is only a Jersey thing since I’ve been eating it that way since I was a kid. Many of my friends growing up ate it this way. It’s the perfect acid that cuts through the rich cheesiness of the dish.

I told you long ago that chefs invented condiments to enhance food and keep it in balance. Think ketchup for a big beefy cheeseburger. A side of pickles on your plate. Vinegar or lemon with your fish and chips. Mustard and or sauerkraut on a big greasy hot dog or sausage. See?

Without acid, the dish isn’t balanced with your palate; it won’t taste as good. The key word here is they are condiments, to compliment your dish, not drowning your food with ranch dressing or ketchup.

The exciting thing we are doing tomorrow is making soft pretzel nuggets from a bag of Trader Joe’s GF pizza dough. People keep posting the ones they made on the Gluten Free Albany Facebook group, so we want to see if the hype is true.

I hope I didn’t completely bore you to death with this post, but this is my life for now.

Happy Friday! Looks like we are in for a big snowstorm tonight; let’s see if they are right this time. 😜

Today, I got a doctor’s appointment and a chest X-ray for my birthday, just like I did on Valentine’s Day. It’s been a hell of a month for me. I am not getting better. 

It’s hard to believe it has been seven years since I turned 50, which felt like only a year ago. Leading up to my 50th, I was freaking out. The actual birthday was beautiful since I celebrated it with my biological mother in person.

It was only the second time that happened.; 50 years apart. It was a dream come true! Something I have wished for more than 40 years! It was the best birthday of my life.💕

Now, turning a year older isn’t a big deal. The years seem to go slower when you are young, but now they fly by. I saw a birthday quote today that went like this.

“For my birthday, I wish for another birthday. “

That indeed sums it all up. Every birthday is a blessing and not a bad thing. I am seeing what some of my singing idols, like Madonna, are doing to themselves with plastic surgery to look younger. This made me realize it’s better to grow old gracefully than fuck around with Mother Nature.

To update my health, I’ve been on bed rest except for making spätzle batter and working a little in the production kitchen before Marty kicks me out and tells me to rest. I come inside and sleep for 3-4 hours.

I am sleeping a lot since I am still exhausted, coughing, and have shortness of breath. I couldn’t overdo things even if I wanted to. I simply can’t—another week without belly dancing or seeing my friends.

Marty gave me a Go Pro for my birthday, and I haven’t had the energy to play with it or practice editing videos for my YouTube channel.

For my birthday dinner, we got Chinese takeout since we were already in Bennington for my X-ray. There is a place we trust to make our food gluten-free since Chinese food is usually not. When I was little, I always wanted Chinese food on my birthday, or Italian.

When I woke up this morning, I saw Noah wishing me and his girlfriend Aja Happy Birthday on Facebook. It was such a beautiful post from him. 🥰

Noah is always smiling ear to ear these days, which is wonderful! Aja is such an amazing, sweet, and genuine person who makes Noah happy. That is the greatest gift of all for me. Not only do Aja and I have the same birthday, but we are also very similar as well.💜

Sam made a surprise visit from Burlington this past weekend. It was great seeing him since it’s been a few weeks since he visited last.

He also picked up a shift at his old job since they were short-handed. He worked 6 pm-6 am, then drove home to Essex to sleep before his 12-hour shift at UVM.

Sam cooked me a birthday dinner. He went to a local butcher shop and picked up the ingredients. I loved watching him cook! The meat was cooked perfectly, exactly how we like it, and was super delicious. It was full of love; you could taste it.

Our friend Martin invited us over last night for an early birthday dinner. I was so relieved I didn’t have to cook dinner for the two of us. We sat at his kitchen peninsula and watched him cook our dinner. We love watching him cook.

The food was beautiful as always. It was a short visit, we arrived at 6 pm and I was home before 8 pm. I appreciated his birthday meal so much like our friendship.

Poor Marty had to run off just as we finished eating, he went on a rescue squad call. It’s normal, it happens all the time. At least he was finished eating this time. When he got back they had another call. I was in bed way before he got home.

Marty bought me a tiny gluten-free birthday cake with a pink candle. When I was little, I always shouted, “I want a rose” when a birthday cake was being cut. The frosting on this cake was my favorite kind, gritty buttercream with lots of roses.

Well, that’s a wrap and another year for me. Fingers crossed that we can figure out what’s happening when my primary care doctor sees the X-rays in the morning. I need to get better before I go stir-crazy, dammit!

Many things come to mind when I think of the word delivery. “It’s not delivery. It’s Digiorno.” “Speedy delivery, speedy delivery.” Then there is FTD. Amazon, UPS, FedEx, USPS. Pizza, Chinese, Grub hub, and a shit load more. 

A vendor friend of Marty and mine has a business called The Food Florist, which is a brilliant name. Trish took the FTD idea and made it her own. Before I get into her business. What does FTD stand for? 

We know it stands for flower deliveries, but according to Wikipedia, the official name is Florists’ Transworld Delivery, which is a floral wire service, retailer and wholesaler based in Downers Grove, Illinois, in the United States. FTD was founded as Florists’ Telegraph Delivery in 1910, to help customers send flowers remotely on the same day by using florists in the FTD network who are near the intended recipient. 

Why did people start giving or sending flowers in the first place? Flowers sent to sick people were meant to cheer them up. They are given or sent with good intentions to help the sick recover. 

For the record, gifts can also be sent with bad intentions. I have received a couple of gifts with bad intentions, and as soon as I opened or received them, I dropped them like hot potatoes. I could feel the bad intentions. 

Back to The Food Florist, she had a truck that looked like a floral delivery truck, but instead of flowers, she had frozen chicken pot pies, fruit pies, breakfast bakes, lasagna, and many more menu items.

Trish didn’t deliver the well-intended frozen meals to sick people, new mothers, or family gatherings; she had pop-up and farmers market locations where customers could purchase her meals. The customers delivered the meals themselves. 

She was very successful in Albany, NY, but after the pandemic, she couldn’t find people to work since there was a lot of food prep and cooking involved. She moved back to the midwest, where she lived before moving to NY. 

The shame is she provided so many meals for people to buy during the pandemic when no one was going out to eat. Her customers were devastated since they loved her and her food so much. 

As in true Irish storytelling, I am now getting to the point of this blog post. 

The other day when I was feeling awful and exhausted, our friend Martin, the chef across the street, left a sheet pan covered with foil on our front porch. 

He texted me that he had cooked us dinner, and it was on our porch. This was a pleasant surprise, one I was grateful for since now we didn’t have to scrounge around looking for something easy to cook. 

This was a special delivery sent not only with good intentions but love. Martin is such a sweet guy and such a good friend. 

He made a pork loin with my favorite side dish of his, mashed Asian white sweet potatoes with a sweet, garlicky lime sauce. The potatoes are so different and delicious. 

How lucky are we to have such a thoughtful friend? We always make a lasagna and bring it to someone with a death in the family. The family could still eat while planning their loved one’s funeral arrangements.

This lasagna giving thing is a Jersey and downstate New York thing to do, dropping one off almost immediately when someone dies. My lasagnas are made with comfort and caring intentions, and with love.

I have a remarkable story about when my dad died and lasagna. It’s a post for another day, though, since it is lengthy.

Many friends and family have been checking in to see how I feel. Want to know how I feel? I feel loved. 🥰