Emily M. DeArdo

writer

Burdens

essays, family, life issuesEmily DeArdo1 Comment

Kelly at This Ain’t The Lyceum wrote a great piece about how everyone is a burden to someone at some point in her life. It’s not just people who are disabled, or poor, or old, or whatever. ALL of us were, or will be, a “burden” to someone.

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One of the things you hear when people talk about assisted suicide is that they don’t “want to be a burden” to their loved ones. But think about it. Babies are inherently a burden to their parents. They can’t do anything for themselves. We all started there, and we’ll probably all go back there as we get older.

This touched me specially because I had a call with a “disability caseworker” last week, and I’m working through the SSDI application process. This entire process is dehumanizing and humiliating. It boils down to what you can do, and strips away anything else. So at the end of this call, which involved both my parents, I burst into tears.


“Why are you crying?!” My parents asked.

“Because these things are so humiliating. I feel like such a burden to everyone, I can’t do anything, you guys are just stuck with me forever! No one wants me!”

“We want you,” my parents said.

And then they reminded me that they really did want me. This wasn’t just parents saying what they’re supposed to say (like when you ask your boyfriend if a dress makes you look fat. There’s a right answer to that question.).

My parents really wanted me. They prayed hard for me. They got married in 1979 and I didn’t appear until 1982. My mom always wanted to be a mother. They prayed hard for me, and, in an example of God taking people seriously, Mom had said in her prayers that she would take a baby who needed extra care, because she knew she could love and take care of that baby.

And believe me, she has. The things my parents have done for me would take a really long time to explain, but here’s just a bit of it:

  • Many, many, MANY ER runs (One during the Super Bowl, when the Steelers were playing. My parents are huge Steeler fans.)

  • Monthly blood draws when I was a toddler.

  • Driving to Cleveland in a snowstorm for an appointment.

  • Many many many overnight hospital stays

  • Learning how to reconstitute medicines and give them via an IV, even 8 or twelve hours—yeah, that means middle of the night stuff. WHEEEE!

  • Beating on my chest twice a day, every day, as part of daily CF therapy (now that’s not really needed, there are inventions that take care of it, but back then, not so much).

  • Many insurance phone calls

  • Learning how to dress a third degree burn, and then doing the dressing at the kitchen table, which was just par for the course at our house.


It’s a lot. And I’d be lying if I said I never felt like a burden to them, because I do. Our society makes it clear of what it thinks about “people like me”. I’ve had people tell me, to my face, that I shouldn’t exist. That’s sort of hard to deal with. And as I get older, I get increasingly sadder about this fact that I’m not married, so my parents have to handle everything for me, because I don’t have a husband to help out. (Not that every husband would help out….)

But really, Kelly’s right—we’re all burdens. We just are, it’s part of being human. We depend on each other. Think about it. Even a “normal” kid needs mom and dad’s helps. Even “normal” adults need help every once in awhile. We can’t do everything ourselves, it’s just not possible.

But we see this as being wrong, and as something that needs eliminated. Sure, we all want to be independent. I am very glad, for example, that I can use the bathroom by myself, because having gone through periods of my life where I’ve had to wait for a bedpan or three nurses to help me, I do not take that ability for granted. But you know, there are times when I haven’t been able to do that, when mom has had to wash my hair, or Dad has had to call AAA because I can’t call them.

It can be a lot. It can be humiliating, and it can be depressing. As a society, we need to really focus on the person, because we are all God’s chosen people, in that, God willed us into existence. This is my existence.

I’m glad that I am independent, in some ways. I’m glad that I don’t need to rely on my parents for everything. But at the same time, I know that even when I have needed that, they’ve answered. And I know some parents don’t—I don’t know them personally, but I’ve seen them, I’ve heard the horror stories. I’m lucky.

People are people to be loved, not to be called burdens or dismissed because of it. Really, we could all be burdens to God. Think about how slow we are. I mean, doesn’t he ever sit up there and just facepalm? Seriously, humanity?! WE COVERED THIS!!!!!

But God made us anyway. People love us anyway. Our worth isn’t about what we can do or what job we have or anything external. Worth is internal.




Re-set for Advent

Catholicism, essays, journalEmily DeArdoComment

Does this week seem weird to anyone else? Like, there’s all this extra time? I’m so used to going right from Thanksgiving into December that this week has been throwing me off. Don’t get me wrong, I like the extra time, but it means that everything is being done early chez moi. For example, I usually send out my Christmas cards after Thanksgiving—I actually mail them on Thanksgiving, usually—so having them arrive at places before December 1 hits is just weird this year.

 Decorations at my  parents’ house—this is the front hall.

Decorations at my parents’ house—this is the front hall.

My shopping is done. I’m mailing out the gifts that need mailed and the things that need wrapped need wrapped. I’m not a great wrapper so I tend to delay it for as long as possible. :)

Thanksgiving was quiet, which was nice, because Christmas is nuts in my family. We have our big family reunion two days after Christmas, and then I’ve got friends coming home for the holidays so I want to spend time with them, and it’s just a big joyful crazy time, which I love.

With the “extra'“ time this week, I’ve been doing a bit of a reset. I read about reset days here (yes, it’s a guys’ website, but it’s good info!), and on Monday, I decided to do this. Being knocked out for two weeks because of Crazy Med made me lose a lot of time in November and I’m still not completely caught up on things like housekeeping and my NaNo novel but it’s all good.

So I used the “reset” day to reset before Advent (I like how that rhymes, too). Cleaning the house is part of it, but also getting ready for Advent—decorating the house, putting out the wreath, things like that. Making a big to-do list was really helpful.

 An ornament I made in 8th grade art class.

An ornament I made in 8th grade art class.

I love Advent. I love the sense of preparation, and December is really the only time of the year that I like snow. Every other time it’s sort of meh. (That’s putting it mildly)

But I like the New Year aspect of Advent, too, because it is the new year for us, and I like the freshness, the starting over, the hope that comes in Advent.

So if you need a reset day too, you’re not alone. Let’s get ready for a new year, a fresh start, and the coming of the Baby Jesus!





Black Friday/Cyber Monday/ Small Business Saturday....oh whatever, it's a sale!

Catholic 101, writingEmily DeArdoComment

It’s that time again!

I put Catholic 101 on sale twice a year (If you’re a blog subscriber, you have a code for 15% off that you get when you subscribe, and that’s good anytime): on my transplant anniversary, and during Black Friday/ Cyber Monday/ Small Business Saturday, whatever it’s called. :) And that sale starts today!

So, from right now until midnight next Tuesday (December 27), Catholic 101 is $7, which is more than 25% off the retail price of $9.50. You can buy it for yourself, or give it as a gift! It’s available for all formats except Kindle, because Kindle formatting is…special. However, you can download it as a PDF and read it on your computer, if you only have a kindle.

You don’t need a special code or anything—the price is already reduced. Every purchase makes me really happy. So if you’re looking to shop small this year, I’d appreciate any support! :)

The book is 147 pages divided into four sections. It’s great for any Catholics in your life, or anyone who is interested in learning about Catholicism. It’s based on the series I wrote here on the blog, but there is also lots of new content that’s only available in the book.

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(And, additionally—if you’re looking for a good Advent devotional, may I recommend Rooted in Hope?)

On My Soapbox: When people say they want "healthy" kids

Catholicism, CF, essays, health, life issues, transplantEmily DeArdo3 Comments

and some theology

I know that when most people say they want a “healthy baby”, they’re not being rude or mean. They’re probably trying to be nice.

But guys, I wasn’t a “healthy baby.” I looked healthy, initially, but I wasn’t. I had seizures. I had (and still have) thalessemia minor (I think it’s called type b now? Not sure). I got the CF diagnosis when I was 11.

So, should my parents have just pitched me back? “Nah, sorry, we wanted a non-defective model.”

And I know that people do that now. People kill their babies in the name of the kids “avoid suffering” in their lives. Bull crap. “Yes, let’s kill you, so you never get to have a life.”

That ties into part two: saying “God is Good” only when things go the way you want them to go.

Guys. God is good all the time. He is Good. It is in His very nature to be good. But that doesn’t mean that God’s Goodness=what you want.

Because it doesn’t work that way.

God created me with my “defective” genetic code and my blue eyes and my blonde hair and my fair skin and my wonky teeth and an ankle that cracks oddly. I have a really good memory and I love children and I do a pretty good Sebastian the Crab imitation. I have The Phantom of the Opera libretto memorized. (And Les Miz. And Miss Saigon. And Ragtime. And Parade…)

And yeah, I also have CF. I had a transplant. I’ve got scars. And I do talk about it, because it has become clear to me that it has to be talked about, because people see illness as scary and something to be avoided and pain as awful, to the point that Canada is allowing pediatric euthenasia.

God is always good. And God made me the way I am for a purpose. Is it always fun? No. It is not. There are times when I’ve been really peeved about it, to put it mildly.

But at the same time, it has made me who I am, and in general, I like who I am. I wouldn’t want to change that for the world.

God is not being “mean” to me. He created me the way he wants me to be.

And health doesn’t always stay health. Health is a transient thing, guys. Everyone will get sick. Everyone will die. It seems that in our society now we are idolizing life and health to the point that it is fully unhealthy. We’ve forgotten that we will die, that life is fleeting, that our home isn’t here.

Children are a gift from God, no matter how they come.

And God is always good. And He always loves me.

He always loves you, too. No matter what.

As [Jesus] passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither he nor his parents sinned; it is so that the works of God might be made visible through him.”

John 9: 1-3, NABRE

Preparing for the Savior: Rooted in Hope Advent Devotional

books, Take Up and ReadEmily DeArdoComment
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Can you believe that Thanksgiving is next week? I sure can’t. And after that, we’ve only got a week before Advent begins! The new church year is almost here!

If you’d like to give yourself some respite, some margin this Advent—some extra prayer time to prepare for Jesus’ birth—may I recommend Rooted in Hope?

This is our (Take Up & Read’s) revised Advent journal. We’ve added an entire extra week of reflections from Christmas Day to January 1, so that you can continue meditating on the greatest gift of them all in the days after Christmas—into the Christmas season, which is really a season in the Church, not just a day!

The REVISED COPY includes:


•8 more days of scripture, devotions, and journaling pages for Christmas week, all the way through New Year's Day,
•insightful research to make the lectio divina pages do-able during a busy season,
•undated pages to make this a timeless resource, usable each year.


Each day contains:
•scripture passage for prayer and reflection,
•a devotional essay, 
•pages for guided lectio divina, 
•space to organize your days. 

Journaling pages and useful planning pages feature clear and elegant design, exquisite hand-drawn illustrations, and gorgeous calligraphy.


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It really is a beautiful book. I adored using it last year and I’m excited to get my hands on the revised copy this year. One of my favorite things? The planning pages. It’s so easy to forget all the things we have to do. Here, you can write it all down, and then pray about it during your prayer time. If you’re like me, lists help bring you peace.

If you don’t want to use the planning pages, you don’t have to! Our books are designed to be used in the way that best suits you.


You can order your copy right here. If you have any questions, leave them below and I’ll answer!

Thirty-six or sixty-six?

health, transplantEmily DeArdoComment
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AKA: I’m getting too old for this. :-p

So for the last two weeks I’ve been on levaquin, a drug that my docs use to help with any infections I get—sinus infections, lung infections, etc. It’s our first line drug. But it’s not most people’s first line drug, because…they’re normal. :)

Me being me, I already take a fair amount of prophylactic (aka: drugs to keep me from getting sick) antibiotics. Since I’m always on those, when I do get an infection (which last happened during 2016), I have to go for harder core meds. It’s either cipro (which treats anthrax! Yay!), or levaquin.

These are in a class of drugs with a reaaaallly long name, but they have some fun side effects. (sarcasm font!) Cipro messes with my stomach; levaquin messes with my sleep. So when my ENT prescribed levaquin after seeing the start of a sinus infection, I resigned myself to alternating between Zzzquill and Tylenol PM for the next two weeks.

Well, this time, and in the “I’m getting too old for this” category, I’m having issues with my tendons, which is also a side effect of these meds. This is better than joint issues in one area only it isn’t nearly as painful. However, it is annoying because I don’t know how far I can force my body to go without a tendon rupturing (which does NOT sound fun). So far, my left knee, my right elbow, and my right wrist have been the most affected. Essentially, they’re just really sore, and I can’t do much. I can’t knit, which is driving me crazy, and it’s even hard for me to hold books, so I’m reading on my iPad (which thankfully I have). I’m essentially a lump on the couch.

Now, this irritates me to no end, because I do not LIKE being a lump. And I can’t even SLEEP or nap, because of the insomnia side effect. Grrrrrrrrrrrr.

Anyway, getting too old for this. :-P But at least my sinuses are better! And I’m getting to read a lot of Harry Potter.

Being authentic

journalEmily DeArdoComment
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Authors these days have to have a “platform”, which basically means a blog, social media presence, things like that. And if I’m being honest, this is the hardest part for me. I sucked at selling Girl Scout cookies, so selling myself is even harder.

Some of the advice given to people who are creating platforms talks about “curation”, about talking about only a few topics, about having a consistent look across all platforms. Some of that makes sense. And some of it….doesn’t.

When you read what I write here, I hope it comes across as authentic. I hope it comes across like we’re talking over coffee or something. I share, because I want to, and I share all the things I like, not just things in a few topics. My IG feed lately has been yarn and books and flowers, because I love those things, but sometimes I take silly pictures of stuffed Darth Vaders at Hallmark, because it makes me laugh.

I want to be real. This is how I am. I want to think that if you met me in person, you’d know me; you wouldn’t be shocked to find out how I feel about being Catholic, or that I love kids, or that I am a Jane Fan Girl, or that I love hockey.

I don’t want to worry about curating myself on social media. I want to show you what’s real. That doesn’t mean I share everything, because the Internet is not my diary, guys. :) But I do try to show the good and the bad, because a big part of what I do is tied into health stuff—and I want to show you what that is, reasonably. I don’t blog about every single doctor appointment I have. I don’t IG selfies of myself in a waiting room or in surgery waiting, because to me, that’s sort of private. But I’ll certainly write about it later.

 I love squishy yarn!!

I love squishy yarn!!

I won’t share everything about my life, that’s for sure. Because, you know, privacy is cool. But at the same time, I want to be authentic with my readers. And that means talking about all sorts of things, not just what I want to “curate”.

Yarn Along #80: Shawl finished!

Barton Cottage Crafts, books, knittingEmily DeArdo2 Comments
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I’m so pleased with how this little guy (well, not little!) turned out! My ravelry notes are here. And, yes, Santa is bringing me more yarn so I can make a third Drachenfels shawl. :) Can you tell I love this pattern?

I’ve also finished two Barton Cottage Craft orders. This one, below, was done in Knit Picks’ Chroma Twisted Lakefront:


And I finished a cowl! Well it’s not done done, it needs blocked, but it’s off the needles. Ravelry notes here.

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Also, I’m planning on making more cowls, to really hone my circular knitting skills. I’ll be using lots of this yummy Quince and Co yarn:

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As for what I’m reading:

Right now I’m rereading the Anne of Green Gables books, and I’m on the last one, Rilla of Ingleside. When I first read it as a kid I didn’t know much about World War I, and it’s been a long time since I re-read it, so I’m thinking that this time around I’ll have a much richer reading experience.

I’m also reading The Cozy Minimalist Home, and re-reading Circe, by Madeline Miller.

A Day in the Life of a Lay Dominican

Catholicism, Dominicans, prayerEmily DeArdo4 Comments
 St. Dominic (detail) from Fra Angelico’s  The Mocking of Christ with the Virgin and St. Dominic.

St. Dominic (detail) from Fra Angelico’s The Mocking of Christ with the Virgin and St. Dominic.

Lots of people, when they hear I’m a Lay Dominican, want to know what that means—and I realized I’d never written a blog post about it! So I’m way overdue to write one about what this vocation actually means. :)

(It’s going to be sort of long. Sorry. But thorough!)

When St. Dominic founded the Order of Preachers (that’s what Dominicans are also called—and it's abbreviated OP, so if you ever wanted to know what that means, now you know!)

The “First order” is the friars and brothers—they are priests, or “cooperator brothers”.

The “second order” is the cloistered nuns, who live in monasteries. Yes. Monasteries for nuns.

The “third order” is the laity and the sisters (the sisters live in convents. Nuns are cloistered, which means they don’t go out of their monastery without a good reason and permission. Sisters aren’t enclosed.). Dominican sisters in the U.S. are involved in many ministries.

Now, third order laity members don’t look different than anyone else. We don’t wear a habit or any sort of insignia regularly. (Alas!) We can wear a medal of St. Dominic or another Dominican saint if we want, or a pin that has the shield of the order. But we don’t look any different than anyone else.

We make promises, not vows. They’re not binding under pain of sin, but we do take them seriously.

A “day in the life” of a lay Dominican actually depends on the person! It can look radically different for everyone. The rule of life for Dominicans is very flexible and allows for a lot of adaptation, which is one of its strengths.

However, in that day, the four pillars of Dominican life are probably represented. These are:

  • Prayer

  • Study

  • Community

  • Apostolate

 El Greco,  St. Dominic In Prayer

El Greco, St. Dominic In Prayer

Prayer is—well, prayer. A lay Dominican prays lauds and vespers from the liturgy of the hours and says a daily rosary. She attends Mass as often as she can, and attends confession frequently. A yearly retreat is a good idea. You’re taught how to pray the liturgy of the hours in your chapter meetings (at least I was), and you can use either the books of the breviary, or an app—whatever works better for you.

Since Our Lady gave the rosary to St. Dominic, of course we are devoted to it! :) We try to say one set of mysteries—five decades—a day. If you can do more, great!

 Bernardo Cavallino,  St. Dominic receiving the Rosary from the Virgin

Bernardo Cavallino, St. Dominic receiving the Rosary from the Virgin


So, how does that look in my day?

I say lauds, generally, right when I get up. I go downstairs, start the coffee, and start lauds. When I was working I said lauds at my desk before the workday began.

I say vespers around 5:00—if I’m going out to eat, or have evening activities, it’ll be later, whenever I get home. The rosary I try to say right after vespers, but if that’s not possible, then I say it before I go to bed. My love of the rosary was an early sign of a Dominican vocation. It’s long been my favorite way to pray!


Study

 Statue of St. Dominic on the motherhouse campus of the Dominican Sister of St. Cecilia, Nashville, TN.

Statue of St. Dominic on the motherhouse campus of the Dominican Sister of St. Cecilia, Nashville, TN.


In the above statue, you see St. Dominic holding a book. Study is key to the life of all Dominicans—St. Dominic wanted his family to preach the faith fearlessly. But to do that, they had to know the faith! That meant study. Even today you will find many friars assigned to universities around the world, where they interact with students and teach theology classes. Preaching is at the heart of the Dominican life—the holy preaching of the truth (“Veritas”) of Christ.

St. Albert the Great, a Dominican, gave us the scientific method. The “angelic doctor” of the Church, one of its mightiest theologians, is St. Thomas Aquinas, also a Dominican. But that doesn’t mean that you have to be a genius to be a Dominican. Blessed Margaret of Costello was blind and abandoned by her parents.

What you have to have is a love of study and sacred truth. This can mean daily bible reading, reading spiritual works, taking theology classes—whatever suits your interest. Sometimes chapters will study something together. But to be a Dominican, you have to love to read.

How do I do this? I’m generally always reading at least one spiritual book. I’m working on building the habit of daily bible reading (lectio divina). I love to read spiritual books and look forward to talking about them with my friends or writing about them here. You don’t have to read St. Thomas’ Summa. You can read “popular” theologians, like Scott Hahn or Bishop Barron’s writings. If you want, you can read the Summa! You can dive as deeply as you want. But you should always be learning more about the faith.

Community

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Community doesn’t really always play a part in daily life—there are monthly/regular chapter meetings (every chapter varies, I think most meet once a month), but in daily life, there’s not a whole lot of contact. Certainly I have Dominican friends, including the friars that I personally know, but this isn’t an area where I have consistent daily contact. Some people probably do. For the friars, sisters, and nuns, of course, community is daily; it’s how they live.


Apostolate






 Fra Angelico,  Coronation of the Virgin  (Fra Angelico was a Dominican friar, by the way!)

Fra Angelico, Coronation of the Virgin (Fra Angelico was a Dominican friar, by the way!)



Apostolate is “contemplating and sharing the fruits of contemplation”—a twist on St. Thomas’s saying (one of the mottoes of the order: “to contemplate and share with others the fruit of our contemplation.”) My blog is one of my apostolates; I write about the things I discover in prayer and study. The Catholic 101 series and the resulting book are fruits of my study, prayer, and Dominican vocation!

Some Dominicans I know are hospital chaplains; others are CCD teachers, work in homeless shelters, or make rosaries. There are as many apostolates as there are Dominicans. Mine tends to be more on the writing end, so it’s pretty daily for me. I write blog posts, or essays for Take Up & Read, or work on manuscripts that have to do with Christ and the Church. That’s my apostolate.

To sum up: A Day in the Life of a Lay Dominican is drastically different for every one of us, but it’s always rooted in prayer and study, finds support in community, and brings forth fruit in the apostolate of each member.

Here are links to the Lay Dominican provinces in the U.S.

Eastern (that’s me)

Central

South

West

Do you have any questions? Send them to me in the comments!









Med-sanity II

health, CFEmily DeArdoComment
 My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

I was supposed to have a procedure done on a skin cancer on my ear today, but that’s not happening. Because….sigh.

A little background. While CF is becoming less of a “childhood” disease and more of an “adult” diseases, adult hospitals have not caught up. I’ve been in several, and what I’ve noticed at 98% of them is that the doctors and staff cannot look at someone “young-ish” and see chronic disease. They think that anyone under 50 must have been perfectly healthy her entire life and thus, can just do whatever they want.

WRONG.

A few examples:

  • You can’t do an MRI on me. Magnet in my head.

  • You can try to put in a PICC line, but it won’t work. My veins are all scarred over from the years of previous PICC lines.

  • You can’t use adult sized needles on me; my veins can’t take them. You need baby sized needles, small child sized needles. I have small child sized veins. And you also have to be good—you can’t just look in the crook of my arm or my hand like you could with a regular adult. I’ve had IVs in my shoulder. I’ve had them in my thumb.

And, what’s pertinent to today’s discussion: I am on many* meds for a variety of conditions. You can’t just prescribe a drug for me without looking at side effects and being aware that they might happen.

This is relevant because, as I wrote in the previous post, when you already have mental health issues, you tend to not like drugs that can make those worse.

So, when I (my mom) called the doctor about the side effects I was having—supreme irritability, mood swings, etc.—the nurse said, well, stop the med and I’ll talk to the doctor.

OK. Done.

We (mom and I) get a call a few hours later when we’re at dinner. The nurse says that 1) the doctor doesn’t think the med is causing the issues, but stop anyway 2) they cancelled my appointment for today and 3) they want me to go to my “PCP” (primary care physician) to have my “mental stability” assessed.

That last point is sort of an insult, frankly.

I’ve been seeing a psychologist since I was 16. I’ve been on a medication for anxiety for that long. My doctors KNOWS this. It’s in my freaking chart, that I take this med. I am not unstable, but yeah, the med you put me on? Made me a littleeeeeee irritable and sort of unhinged. Yeah. But that doesn’t mean I’m going to flip over procedure trays and get into WWE fights in the waiting room. Stop the med and I’ll be fine.

It’s like when I do a steroid bolus. It makes me SUPREMELY cranky and irritable. But I know it’s the meds and the courses are usually short. In this case, the med isn’t even necessary, there are other ways to treat this guy. I’ve had lots and lots and lots of terrible medications in my life that have given awful side effects, but they’re necessary so I suck it up and deal with it. This isn’t necessary.

Second, I don’t have a GP/PCP. I TERRIFY GPs, because I’m complicated. The ones I’ve met are usually afraid to do anything to me because they don’t want to mess things up. So my “GP” is my transplant pulmonology team.

Third, read my freaking chart. Really. It comes back to this all the time with adult hospitals and physicians. “Do you have lung issues?” Seriously, I was asked that question. (Not by this doctor. Another wonderful adventure years ago.)

So a procedure today had to be rescheduled for next month, and I have no idea what we’re doing with the cancerous spot on my arm, except I’m not taking the med anymore to treat it.

Which brings us to the big lesson, here:

I have lived in my body for 36 years. I have a very, very well-tuned—exquisitely well-tuned, I’d say—sense of status within it. I know when “something is not right”, to quote Miss Clavel. And I don’t think I’m exaggerating when I say that that instinct, and my parents’ equally honed instinct, has saved my life on a few ocassions.

Doctors and medical people need to listen to me. I’m not always right. But when I say something is the med, it’s the med. When I say X is happening, and it’s because of Y, it probably is.

It’s basic science. When you do an experiment, and you add a variable, an things go haywire—it’s not because of everything that came before. It’s the variable you just added. That thing has pushed the balance over the edge. Remove that thing—balance restored.

*I am on vastly fewer meds now than before transplant. That being said, I’m still on what the average person would consider “a lot” of meds.


Med-sanity!

health, journalEmily DeArdoComment
 Seriously, who would get mad at this guy?

Seriously, who would get mad at this guy?

One of the things I hate about mental health issues is that it’s so easy to freak out when you feel yourself starting to slide. It’s so gradual, that it can be just a few little things, and then suddenly you have a day like I had today, where if the World’s Cutest Corgis came into my yard, I would’ve flown into murderous rage.

Seriously.

I was so unhinged all day, and if I had to pinpoint it, it would’ve started on Sunday, when I go so angry at the Steelers that I was yelling and swearing and generally losing it. But today, when I wanted to bite the head off any human being I encountered, including my super sweet and wonderful boss, I started to think, waaaaait a minute…..

I ran through the regular triggers. I’d been sleeping amazingly. So that wasn’t it.

I had a Diet Coke, and some Earl Grey. If it was a caffeine/sugar issue, that would fix it. No go. (I put milk and sugar into my Earl Grey, for the record.)

I had some dark chocolate in the house and had a piece of “emergency chocolate.” Nope.

Wait a minute…..maybe it’s……the skin cancer med.

I looked up the side effects online, and there it was: mood disorders (anxiety, depression, etc.)

BINGO.

Now, just knowing that I’m not going crazy—literally—is very helpful.

But in the all and all, I’d rather have physical side effects, because then you can take something. Nausea? Vomiting? Phenergan! Pain? We got stuff for that! Can’t sleep! Meds!

This, nothing I can do except ride it out until Halloween when the course is finished.

I’m already on anti-anxiety meds (since I was 16), so….can’t do anything about that, and even if I wasn’t, it can take awhile for the meds to build up in the system, so it wouldn’t really help, most likely.

So, while the med is just a cream, apparently it’s tres potent, and after not even a week….oh well.

I can hang in there. It’s just nice to know I wasn’t entirely losing my mind. But I think I might hide in my hobbit hole for a few days so I don’t take the head off anyone who doesn’t use their turn signal. :-p

#22 Jenny Colgan

books, journalEmily DeArdoComment

I adore Jenny Colgan books. They take place in England/Scotland, and they are just so snuggly. I mean, who else writes about a character who has a PUFFIN for a pet? Seriously, people. And there are recipes in each book.

So when I was having a GRUMPTASTIC day, I realized there was a new Jenny Colgan book out. I went and got it. And made tea.

Reading Jenny Colgan makes days better. Any day.

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More skin cancers!

health, transplantEmily DeArdo2 Comments

As I’ve written about before, I’m really susceptible to skin cancer. Not just because I’m fair, but because of the meds I’m on. The anti-rejection meds I take make me 10 times more likely than the general population to get skin cancer. So even though I am vigilant about sunscreen, and always have been, now I have to be even more vigilant.

Unfortunately, I can’t stop taking the meds. And I can’t—or won’t—live in a burqa. So, that means that no matter how vigilant I am, I’m going to get more. Most likely. But, upped prevention also works; when I swim, I cover my hair with one of these, and so far, my scalp hasn’t had any issues again. (Make sure you find the one with SPF in the fabric!)

 It’s cute, right? Right? :-p

It’s cute, right? Right? :-p

The two I have at the moment are, thankfully, easy to treat. One of them is on my tricep, and it’s superficial, so we’re treating it with a special cream. It’s twice a day, for twenty one days, so it’s not a bad course, especially not compared to the IV courses I’ve done that are that long (or longer). I don’t have an IV in, and I’m free to bathe when I want. :) So this is cake.

The second one is on my right ear, on the top curve. FORTUNATELY this is also pretty superficial, so we’re just going to scrape it and laser it off. This is easy, but it does require a lot of waiting room time, because you have to wait three hours between scrape and laser. So, that means books to read!

But enough about me—let’s talk about you. Please, if you haven’t, go to a dermatologist and get a full body check. If you’re a normal person you probably only need to do this yearly. But please do it. The grandfather of a dear friend has skin cancer and it’s metastasized. Skin cancer kills people.

Wear sunscreen. Cover up. Get your skin checked. For the love of God, do not lay out! It’s terrible for your skin, and your vanity. ;-) You want to look younger longer? Don’t tan.

So, that’s this week’s medical adventure.



#21 The Garden (retreat notes III)

Catholicism, journalEmily DeArdoComment
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It was really too hot to spend much time in the garden, but I did manage to get out after breakfast on Saturday and take photos of the roses, and spend some time in the little replica Lourdes Grotto. Isn’t the statue of Our Lady of Lourdes gorgeous? There’s a tiny bench in there, so you can sit and pray, and a little water feature to represent the spring at Lourdes, so there’s the peaceful bubbling sound of water as well. It’s so pretty, and I just wanted to share it with you.

Don’t forget to pick up your copy of Flourish, the new Take Up & Read study on the book of Romans!

#20 St. Therese chapel (retreat notes II)

Catholicism, journal, prayer, Take Up and ReadEmily DeArdoComment
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I’ve been making retreats since….gosh. 2009, maybe? 2008? One of those two. So that’s 10 years of silent retreats, which is sort of amazing when I think about.

I always go on silent retreats. I find that’s the best way to really listen to God, for me, and I sort of crave that silence. This retreat I went into with out “resolutions” (as Msgr. Knox calls them), but just with the desire to fill my cup, so to speak, with God, His presence, His voice, and His quiet.

The chapel is really well suited to these things.

It’s a gorgeous stone chapel, built in the 40s, I think. The floor has the patina of age. It’s always cool in there, and quiet. The decades of prayer are obvious. The art is gorgeous, too, and leads you to contemplation pretty easily, and prayer.

There is a small side chapel, which holds the reliquary (we’ll talk about that in a later post), and has a painting of the Annunciation on the wall. It’s a supremely comfortable spot, because there’s a nice big chair in there, so you can sit and look at the tabernacle and pray, hidden and secluded. That’s where I had one of my holy hours this time, and it really was delightful.

This retreat was different in that there were only three conferences (talks on the retreat theme, which was Mary), so there was ample time for silence and doing your own thing. Usually I also spend time in my room, but since it was so hot, I spent all of my time in the chapel or the lounge. I had brought extra books to read since I knew I’d have spare time (only spiritual books, and my Bible; I don’t bring Outlander on retreat with me.). So a lot of reading, and then note taking, pondering in my journal, Bible reading (lectio), and prayer. It was great.

 The chapel spire from the garden

The chapel spire from the garden


Also, don’t forget: Our new Take Up & Read Study starts on Sunday, all about the book of Romans! Please join us! You can purchase your copy
here.



#19 A Fan (and some retreat notes)

Catholicism, give aways, journalEmily DeArdoComment

(Don’t forget the Flourish giveaway, which ends at midnight!)


I went on retreat last weekend, and usually I write up my retreat notes here, so I think I’ll do that over the next few days. But also continuing with the journal entries, I was SUPER grateful for a desk fan in my room.

The retreat center was built in the 1950s, and in the “old” part, there is no A/C. In the “new” wing, there is air conditioning. Now, normally this isn’t an issue, because all the rooms have windows that open, so I figured I wouldn’t specifically request a room with A/C, because, it’s October.

I should’ve remembered that October in Ohio can be punishingly warm—as in, summer temps—or we can have snow on the first weekend.

We have been in a heat wave that should break later this week. But in the meantime, I had been assigned to a small room, on the second floor of the old retreat house, that had no A/C.

As I trudged up the stairs with my bags I kept thinking, if it gets too bad, I can just go home.

(As a reminder: High temps and CF do not mix. The way we sweat means that we’re much more susceptible to high temperatures as opposed to regular people. Also, the skin graft I have? Doesn’t sweat. So my body doesn’t regulate temperature very well, anyway, in part. So A/C isn’t just “I’m a first world softie.” It’s, “Emily’s body doesn’t work that well on its own.”)

When I got into the room, I saw that there was a small desk fan on the table.

I was very, very grateful.

I was also grateful that the rest of the house—the lounge, the dining room, the chapel—were all abundantly air conditioned, and the doors to these spaces were left open so the A/C could sort of spill out all over the house.

So, desk fans. Don’t leave home without ‘em when it’s hot.

 The chapel, Friday night.

The chapel, Friday night.



FLOURISH giveaway!

writing, Take Up and Read, give awaysEmily DeArdo9 Comments

Everyone! I’m so excited to show you the new Take Up & Read Fall study:

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This study has a lot of firsts for us.

  • It’s our first book that focuses exclusively on one book of the bible; in this case, it’s St. Paul’s letter to the Romans.

  • We have a fresh design from our amazing designer, Kristin Foss

  • recipes are included in the book, so that you can bring Rome to your table or study group

  • A timeline of St. Paul’s life, so you can learn more about this amazing saint!



Flourish does look different from our other studies, and even with all these first, it still has the content that you know and love.

  • Daily Scripture verses to ponder for lectio divina

  • A devotional essay from our fabulous writers (yes, I wrote two. No, I’m not calling myself fabulous)

  • Memory verses for each week, as well as “Selah” days, to catch up on days you missed, or just look over your notes from the previous week

  • A study guide (found on the website) for groups who want to do Flourish together!



Here’s a look at the inside pages:

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So, I’m giving you a chance to WIN a copy of our study!

To enter, all you have to do is a leave a comment below, talking about your favorite book of the Bible. That’s it! (If you don’t have a favorite, that’s OK, too! Mention that!)

Giveaway will close on TUESDAY, OCTOBER 9 at midnight, and the winner will be drawn on WEDNESDAY, OCTOBER 10, so that the winner can receive his/her copy before the study starts on the fourteenth!

All you have to do is leave a comment. Go!