Emily M. DeArdo

Emily M. DeArdo

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Snow Days

books, essays, knittingEmily DeArdoComment

(This project is done! I can’t wait to show you in February’s Yarn Along!)

My general thought on snow is that if I don’t have to go anywhere, it’s fine. I really hate scraping off my car and all the extra time that snow entails when traveling, especially if it’s before the sun has come up. But since I work from home now I generally like it a lot more than I did!

I especially like the sense of quiet and coziness that snow brings. I feel like I can knit, read, putter….and that’s all productive, instead of feeling like I should be out in the world, doing other things!

But when I do go out in the world, there are babies to be snuggled!

Alice and I, becoming friends!

I mean really, is there anything better in the world than holding a baby for hours? There are parts of my chest that just seem made for a little baby head to nestle in—and they probably were! :)

Truly, this is divinity. I am very glad that Tiffany, Alice’s mom, allows me to be so adoring over her child. :)

So while I do have to go out into freezing cold-ness tomorrow for labs and PFTs, it’s nice to come back to a warm hobbit hole!

In Which Emily is Completely Honest: A Hospital Tale

CF, healthEmily DeArdo3 Comments

The results of said Hospital Tale

At almost forty, and with 39 1/2 years of medical intervention under my belt, there is very little that I have not yet done in hospitals.

Procedures don’t really surprise me. What surprises me—and dismays me—is crappy staff.

As you all know, most of my medical experiences have been in a pediatric setting (yes, even when I was in my late 30s). In peds, there are many things that should be passed on to adult hospitals when it comes to how you treat medically complex patients. And, indeed, one of my big worries about moving to New Resort was that they wouldn’t know how to treat me.

This has been born out in a lot of ways, but especially in Today’s Tale!

Settle in.

*

On the first Tuesday of the year, I had a colonoscopy. Not the best way to start the year. And yes, I’m not even 40, let alone 50, so why, you may ask, was I having one? Because people with CF are at a higher risk for colon cancer, so we start our screenings earlier.

Now, I have determined (this is in no way scientific, just based on anecdotal evidence) that there are two main types of CF: The CF I had, which is where everything else works and your lungs are CRAP (to put it nicely) or, your lungs are OKish, and everything else is CRAP—mainly your digestive system. This is where the colon cancer it comes in. I have the first type of CF—once I got new lungs, my CF was pretty much….resolved, in the sense that the rest of my body works pretty darn well. Yes, I still have CF, and will until I die, but I’m not doing chest PT every day, I’m not taking albuterol and pulmozyme, and I do not take any CF specific meds. My diabetes is called CF related diabetes, but it really isn't. That’s just the easiest thing to say, instead of “post-transplant steroids + menopause related diabetes”.

Anyway, all this to say, I don’t really need a colonoscopy. But I had one because I’m a good girl.

So the prep was better this time—I only vomited once!—and we got the desired results on that end.

But then I had to deal with….staff.

*

Ask just about any nurse who has had me and they will tell you I am a good patient. I am polite. I don’t hit them (important in peds!). I don’t call them names, I don’t swear at them, I don’t blame them for things that are not their fault.

However.

We had been told to go to Main Campus to get my colonoscopy because they could access my port.

Hahahahah. They didn’t.

You’re probably saying, Emily just shut up and tell the story.

OK.

So I get there. I go back. One nurse is hunting for an IV spot and one is trying to check me in—running through my meds and such. This is all done with masks on, and the door is open, so there’s a lot of noise because this is a “factory” setting endoscopy unit—move people in, move people out. As in, they don’t know your history, they don’t really care about your history, they just want to cycle you through.

I have a hard time understanding the nurses, so I tell them this.

The first nurse looks at my port and I said, “but if you don’t want to try it, we can put in a peripheral, I have good veins in my right shoulder.”

She doesn’t use those veins. She hunts. She fails.

Now, the first thing is that she’s using a not tiny needle. You must use tiny needles on my veins because my veins are shit.

They call in the anesthesiologist. He doesn’t want to do the ones in my shoulder. (Now, why he was being asked, I have no idea. But he was!)

So after this nurse says, “Well, we can do ultrasound guided IV. I know you don’t like them….” (I had mentioned this.)

I HATE ultrasound guided IV. Here’s why: Instead of going for a surface vein, you’re going into the arm.

INTO. Under the skin, INTO THE ARM.

Think about that for a second. NOT FUN.

Nurse doesn’t want to try my port. I’m…..not sure why.

So I submit.

To six of these.

Anyway throughout all these tries, I am not happy. I am further lead into unhappiness by the following comments:

“Has anyone ever told you you have thick skin?” (I do, but not the way she means, and I don’t)

“Why are you crying?” (BECAUSE IT HURTS YOU IDIOT).

And my favorite, “Are you afraid of needles?”

This is where Emily Honesty came out. “No. And if I ever was, I would’ve had to have gotten over by the time I was five.” Because, you see, I was getting monthly blood draws for my anti-seizure meds when I was a wee bairn. I didn’t mention that I stick myself eight times a day for insulin, so if I was afraid of needles my life would be insanely difficult.

Mr. Anesthesiologist comes in again.

“Well we’ll just have to put one in your neck.”


I have had an IV in my neck, when I was 19 and we needed it there to save my freaking life. Other than that, NO.

So I said that. “No. Absolutely not.”

“Well then you can’t get the procedure.”

“I don’t care. You are not using my neck.”

He shrugs and leaves.

So then we have two more tries, from “good people.”

The first one blamed me for moving during the IV try. Then she looks at my port. “Have they tried that"?”

“Once.”

“I can try it.”

“OK sure. I need a 1.5 inch needle.”

“Oh, we only have a one inch.”

Dad and I drove down to Main Campus because they could access my port and now you’re telling me that in one of the top medical centers in the nation you don’t have a bigger needle?!

No, dear reader. They had a bigger needle. She didn’t want to get one. Let’s be real here. Hem/Onc (hematology/oncology) has bigger needles. I know they do. We use them all the time when I get labs drawn here from my port.

But this woman didn’t want to go find one.

In peds, she would have, or someone would have, if she was a particularly nasty nurse and didn’t want to go get one. I know this, because it happened a lot. If we didn’t have a needle, or we needed help with my port, one of my nurses would call up to hem/onc, who would come over, and then do their thing.

But no, we can’t do that. Why care about patients? Why try to make things easier for everyone?

I left her try with the one inch, no idea why—she didn’t get it, of course, and I said, “well I knew it wouldn’t work.”

The last dude comes in. He gets it, finally. Led to that bruise which topped the post.

I get the colonoscopy. The results are fine.

But I am not having another one.

*

Here’s why.

I only have so much vein “real estate” at this point. I’m probably going to need a new port, because the hospital nurses are not trained in accessing the one I have, although the ones at the lab can do it. (This is shitty training, if you ask me.) You are not using my neck. And I don’t want to give up good veins or things that are not really, truly important. For example, a CT scan with contrast can be important. A colonoscopy? Nope. (Yes. I know. Colon cancer. Etc. etc.)

Two, I’m tired of breaking in new people. I’m tired of explaining to them why I have a port, why I’m getting a test done. I’m tired of them messing around with my body and being generally incompetent. I’m tired of having to deal with this, quite frankly.

This is where peds is so much better. In peds, they understand that you might be complicated. Here, they expect everyone to be easy when they’re my age and are shocked when they’re not. They don’t know how to handle a patient like me. And I don’t want to be their guinea pig anymore. Instead of trying to understand me, they get frustrated because I’m not an easy patient. Well gee, I’m sorry.

I also don’t want to put up with stupid questions (SEE ABOVE!) anymore. I just don’t have it in me.

One of the things the nurses kept saying to me was , “Well, you know, if you don’t want to do this we don’t have to.”

I finally said, “Half of my life is doing things I don’t want to do, this is no different.”

And that’s probably an overestimate, but it’s true. “What I want to do” isn’t even in the decision making graph for me. It’s what do I have to do. I didn’t want to be doing this at all but I knew if I didn’t, I’d get reamed out by my doctor. (I’m going to have a talk with him when I see him in June, just about how I’m not really doing this anymore.) “Want to” doesn’t factor into it, lady.

I am proud of myself for standing my ground on the neck thing. That’s my line and we’re not going over it.

I am, however, really frustrated at how this hospital treats medically complex patients like me.

The Happiest Days Are When Babies Come Part I

familyEmily DeArdo2 Comments

Alice Nicole

January 6, 2022

Alice is the daughter of my friends Tiffany and Bill. You may remember them because I wrote about their son Billy, who was born in March 2020 and lived for seven days before he died. So Alice is their rainbow baby, hence the rainbow onesie she’s wearing. She has her daddy’s black hair and her mother’s facial expressions!

Baby #2, my niece, will have her birth announcement post soon! :)

Blogmas Day 12: First Yarn Along of 2022!

blogmas, books, knitting, yarn alongEmily DeArdoComment

I have so much yarn and knitting to show you! (and books. Always the books.)

Let’s get started!

First up: Jacqui Fink’s Heartstrings Shawl

This is a project from Knit Stars Season 6. It’s not a technical project, it’s an emotion-guided project. Each color represents a certain emotion and you knit with that color until you feel like you’re done with it. So it’s an intuitive project, as well as an emotional one. There’s also a journal that accompanies the project.

I’ve used every color in the kit except black (the dark color you see is navy), and it is really surprising to see what emotions I’ve assigned to each color.

It’s called the “Heartstrings shawl”, and you see the loose ends? Those are the heartstrings—they don’t get woven in.

Jacqui (the designer)’s mother died a few years (five, I think) after receiving a double lung transplant, so I knew this project would be really resonant for me, and it has been. I’ve really enjoyed working on it, and so far I’ve had 21 colors changes!

The yarn is KPC’s Glencoul, which is absolutely buttery. Seriously. I just love working with it. So this project is really just total indulgence!

(Ravelry notes here)

Second: Jennifer Berg’s “The Peaceful People” Cowl

Since the project is still on the needles, it’s a little scrunched up! When it’s done it’ll be easier to see the pattern.

This is my first stranded color work project and I am absolutely in love! This pattern is so much fun. (You can get it from Jennifer’s Etsy shop). Jennifer, who is a Navajo woman, is inspired by Native American history and culture in her work. This design is based off of a Hopi design.

I’m using Malabrigio’s Caprino (80% superfine wool and 20% cashmere, be still my heart) in pearl and pines.

If you’re looking for a first stranded color work project I think this one is perfect! (Ravelry notes here)

Third: “Whatever the Weather” shawl

This is a finished object! It’s an entire year of weather in my town!

I used the high temperature to determine what color to use (you could use the low, the high, or the average temp).

Unlike heartstrings, I have a LOT of ends to weave in here. Also pardon apartment carpet.

2021 began on the right side of the photo. The dark burgundy divider shows where winter and spring end, and after the divider, its summer and fall (through the end of 2021). Once all the ends are woven in you’ll have a better idea of its shape, but it’s a big project! I loved making this. All my notes on it are here.

Book time!

As you know, I got lots of books for Christmas. I’ve made a dent in some of them: The Ballerinas, The Lost Crown*, Clanlands Almanac*, and The Ballerina Mindset* have been read (I got The Last Crown and The Ballerina Project with Christmas gift cards). I’m about to start The Island* (also Amazon gift card purchase) and I’m re-reading In This House of Brede*. (If you want to follow me on Goodreads, here’s my profile. )

I also took advantage of Barnes and Noble’s hardback book sale and got The Tenant of Wildfell Hall for my Penguin clothbound collection!

What are you reading/making?


Blogmas Day 11: Public Service Announcements!

blogmas, healthEmily DeArdoComment

To make this more fun, I give you: John Denver and the Muppets at the start.

So by the time you’re reading this, I’ll be at the hospital having a colonoscopy because I know how to start the year right! :-P

No, this isn’t a cause for concern—it’s regular screening because people with CF have higher rates of colon cancer. So we get to enjoy the special fun.

Anyway, the PSAs are: make your doctor appointments. Right now. Put them in the book. Schedule them.

If you’re a lady who is 40, it’s time to get mammograms! If you have breast cancer in you family, you need to get them earlier! They’re not bad, just do them!

Eye appointments, dentist appointments, all the appointments—make them. Do it.

And that is all I have for you today :)

FYI: The 12th day will be delayed due to the colonoscopy, but it will be out this week!)

(Well, and a Patty picture)

Patty and Dolly at the park! (With brother Frankie)

Blogmas Day 10: A Child Is Born

blogmasEmily DeArdoComment

This week is the week of BABY BOOM. So really, it’s two children are born this week, both of them girls!

My friend Tiffany is having her second child on Thursday! And my niece arrives this week, we think!

(You can read about Tiff’s little boy Billy here and here)

As Melanie said in Gone With the Wind, “The happiest days are when babies come!”

I thiiiink this might be my first birthday party? Not sure!

Blogmas Day 9: Best Things from 2021

blogmasEmily DeArdoComment

Obviously meeting Patty was high on this list!

Favorite Memory: Meeting Patty!

Best thing I read: Go Tell The Bees that I am Gone *

Best new habit: Barre workouts!

Most Memorable Adventure: Amish Country! (all posts here)

That sky!

Song on Repeat: “Immanuel’s Land” (Audrey Assad) and “This Could Change Everything”

Milestone celebrated: 16 years post-transplant!

Best meal or recipe: Kolaches in Houston, and the food in Amish Country!


biggest change: My sister is pregnant and little Maddie will be joining us NEXT WEEK!

Most beautiful sight I saw:

Mel’s ultrasound, and…Patty :)

“Who is this weird person taking my picture ?”

How about you—what were some of your best things?

Christmas music: “Have Yourself a Merry Little Christmas”, Judy Garland (From Meet Me In St. Louis)

Blogmas Day 8: Happy New Year! (With one of my FAVORITE Christmas songs!)

blogmas, Catholicism, ChristmasEmily DeArdoComment

Today’s a Marian feast day, hence Marian photo!

Welcome, 2022!

I hope that all of you have a New Year that is full of joy, happiness, blessings, and good books.

The USCC offers this prayer service to bring in a new year.

Today is also the Solemnity of Mary Mother of God., so we’re going to have some Marian Christmas music.

This song is one of my favorites! Give it a listen!

This is sadly not captioned, so the lyrics are here.