Emily M. DeArdo's Blog, page 7

Putterings

My garden grows!

Long time no write! Time is just slipping by and I realized it’s been awhile since I’ve posted here. So here we go!

My garden, as you can see above, flourishes—I even have my first tomato!

It’s little but it’s there!

**In the garden this year I’m growing lavender, sweet basil, mint, and cherry tomatoes. I’ve never grown any vegetables before but when I saw that this type of cherry tomato grows well in containers I thought I’d give it a whirl. My grandpa grew tomatoes in his backyard, and I loved helping him take care of them and seeing the ripe tomatoes lined up on the kitchen windowsill. I didn’t really think they’d grow, but behold! So today I’m off to the hardware store to get a bigger planter, a tomato cage, and a trowel.

I’m hoping to dry a lot of the basil so I can have it on hand throughout the year. The mint is doing well, and the lavender is too, but I know the lavender is really going to be dependent on our weather. I tried to grow it a few years ago and the summer was so wet that it killed it. So I’m hoping we only have a moderately wet summer so it doesn’t drown. I had to really cut the mint back a few weeks ago because it had gone all leggy, but it’s doing better now.

**I’m going to have an essay published in The Public Discourse, probably at the beginning of June! It’s about transplants, gratitude, and memento mori (because I do think about that!) When the article is up I’ll post a link here and on my social media (you can find the links to all my accounts on the blog sidebar).

**Scotland trip planning continues! We’ve booked our tickets for Britannia, The Palace of Holyrood House, as well as some afternoon teas and meals. Can you tell I’m EXCITED?

Hive mind: Best tips for a long flight? I’ve never taken a trans-Atlantic flight! Tell me what I need to know/pack/do!

**In Knitting, I’m obsessed with the Sophie Scarf and the Sophie Shawl. So easy, so elegant, and so fun.

Here’s a completed Sophie Scarf in La Bien Aimee’s Merino Boucle “There Goes My Yarn Diet”

I’m currently knitting the Sophie Shawl in Quince and Co’s gorgeous Phoebe Yarn in the Orion color way. I’m doing the largest size, so you’d need two skeins of Phoebe to knit this up. These are perfect accessories for adding a little bit of flair to an outfit or for keeping the A/C chill off!

Phoebe in Orion

How’s your May going?

Transplant 101: How Transplants Work

One of the best parts of post-transplant life—having nieces!

It’s the end of Donate Life month, and I’ve realized that a lot of people don’t know how transplants actually work. As in, I think a lot of people think that you have the transplant and….that’s it! Poof! Magic! :)

As much as I wish it were Poof! Magic!, it’s not quite that simple.

The big barrier for transplant wasn’t the actual surgery; surgeons knew how to do that part. The issue was keeping the body from destroying a foreign object, ie, the donated organ (s).

Your immune system is exquisitely calibrated. It knows what’s “you” and what isn’t you, and that’s why it works—it fights things that aren’t you (ie, pathogens) so that you don’t get sick. It likes to kill things that don’t belong, and while that’s great when it’s germs it’s killing, it’s not so great when it’s a vital organ.

So transplants couldn’t happen until immunosuppressive drugs were found. These drugs do what their name says—they suppress the immune system, basically hacking it so that it doesn’t work as well, which means it doesn’t try to kill the thing that “isn’t you”, but it keeping “you” alive. When the body tries to kick out the transplanted part, that’s called rejection. (Rejection is complicated, and there are different types. I’m trying to keep this simple, so I’m just calling it all rejection.)

Your chances for rejection are highest immediately after transplant. At this point in my post-transplant life, rejection isn't really a huge concern. Bu right after, it definitely is the highest concern. So the immunosuppressive meds are at their highest doses immediately post-transplant, and in the years following. As you get father out, the meds decrease.

I’m on three types of medications, broadly:

Program (tacrolimus), aka, “tac.” This is my immunosuppressant. I will take it the rest of my life. When I first had my transplant, I was on a higher dose than I am now, and I was also on another immunosuppressant, which we dropped many years ago now.

steroids, which are also immunosuppressive. I am on five milligrams of prednisone, and I will be on that for the rest of my life. Doctors are now starting to experiment with raking people off steroids a few years post-transplant. We tried that with me, but my body did not cooperate. (My body likes steroids, because I have CF related arthritis. Steroids make joints happy!)

prophylactic antibiotics, meaning, I’m taking these not because I’m sick, but so I don’t get sick. I take azithromycin (if you’e had a Z-pack, you’ve had this med) every day. I like to compare myself to a chlorinated pool. :)

I also take a few other things that aren’t directly related to transplant/immunosuppression.

Now, keep in mind that we have to “hack” my immune system on a daily basis so that it won’t figure out that my lungs aren’t mine. That’s what these drugs do. I will take them forever and ever, amen.

It is a delicate dance—we want to keep my immune system in the dark, so to speak, but we also don’t want it to be so suppressed that I’m getting eery single germ that’s out there. That’s not good.

At this point, what my team and I are worried about treating are the side effects of these medications. If you hack your immune system for seventeen plus years, as we’ve done for me, it’s going to….well, not work right! This puts me at a much higher risk of cancer, especially skin cancer, which is why I see my dermatologist for a full body check every six months, and why I check myself over regularly and am very aware of anything strange that pops up on my skin. (I’m going to my doctor on Friday, actually, to get a spot checked out. Better safe than sorry.) I am diabetic because of the meds. The meds cause other side effects, too, which vary from person to person.

But if you stop taking these meds, BAD THINGS WILL HAPPEN.

And this isn’t just transplant meds. I lost my hearing because of ototoxic (toxic to the ear) medications pre-transplant. We needed strong IV antibiotics to keep me alive, and that has the effect of me losing my hearing and needing my cochlear implant. But, that’s what I chose. (Now, CF doctors are working to be more cognizant of this, yay! I like!) Chemotherapy is probably the best known treatment that causes a lot of side effects that are not, to put it mildly, great.

But these are the choices we make to stay alive.

I’m on many fewer meds than I was at the beginning. At the beginning of my transplant life, I was on four antibiotics daily—now it’s one. I was on at least 40 milligrams of steroids—now it’s 5.

All of this is a big part of why finding the best possible donor match is so imperative. The closer the match is, the lower your dose of suppression can be, because we don’t have to “hack” it as much. I am very lucky that I have a very good match.

So, that’s how transplants work! If you have any questions, drop them below and I’ll try to answer them as best I can! :)

If there's a reason I'm still alive when so many have died

Miss Madeleine at Easter

It’s Donate Life month, so I thought it would be a propos to talk about something that seems simple, but is often not—gratitude post-transplant.

I will celebrate my eighteenth transplant anniversary in July. To me, that is mind blowing. I am eternally grateful that my donor, Suzanne, decided to donate her organs. Otherwise, I would be dead. I would’ve died at age 23, eighteen years ago.

I would’ve missed so many things, not the least of which is seeing my siblings get married, seeing my godson grow up, getting a new goddaughter in Patty, and meeting my two precious nieces.

Miss Hailey

Now, that being said, that doesn’t mean I don’t have bad days. If you’ve read my book, you know this. There are days when I am sick of doctors, sick of meds, sick of spending time in hospital waiting rooms. That’s normal. Med side effects can be really terrible.

But the thing is, I’m alive. I never come out of an appointment going, I wish I hadn’t had my transplant.

Post transplant life isn’t a life with no health problems. It’s different health problems, but I’ll take it because I am alive. The meds cause problems—we’ve been over this here. Diabetes, early menopause, weight gain, messed up joints—it’s happened to me. I deal with it, some days more gracefully than others. But I never wish away my life.

My friend Sage never got the chance I got. I think about her so often, and when I see people saying that they aren’t grateful for their transplant, I get really angry because I miss her so much.

To me, that dishonors your donor. That dishonors the gift.

Seventeen people die daily waiting for an organ that will never come. Every nine minutes, someone else is added to the national list.

I don’t understand how I got so lucky. I don’t know why I’m alive when so many have died. (If you don’t get that reference, here you go:

To not realize how lucky you are, to not be grateful that you are still alive every single day post transplant, is….unconscionable. (And most of the recipients I know are so grateful. We are.)

I could’ve been one of the 6,000 people who die every year waiting. I wasn’t. I don’t know why. But as long as this ride lasts, I will be eternally grateful for it, even on the days when I want to SCREAM at the incompetence of medical professionals and the insanity that is parking at the New Resort.

Because I’m here, when I could very well not be.

Easter birthday!

Happy Easter! He is Risen!

This year my birthday fell on Easter (for the first time!) and that was pretty exciting. I was born on Good Friday but my birthday has been all sorts of days—Holy Thursdays, Palm Sundays, days in the Octave, and once even the Annunciation! (Transferred because it fell during Holy Week.) And sometimes it’s just in “plain old” Easter or Lent.

This year mom and dad and I went to dinner at the Barn, where I had the ost delicious halibut with handmade lemon ricotta ravioli…

Followed by dessert at my brother and SIL’s house, where I got to snuggle Hailey (an excellent birthday gift!)

AND I got to talk to Melanie and Maddie!

Giggles everywhere.

So it was a very good birthday.

Holy Week: Binding Up Jesus' Wounds

“The greatest acts of fidelity are the silent ones. We must never allow ourselves to underestimate the value of those supposed small acts of fidelity…In our day Christ is suffering much, both from members of His Church and from those outside it. By humble, silent fidelity, we are in our measure trying to heal these wounds that Christ receives. He must not be wounded by us. Let us take this deeply into our hearts. Where are we going in Holy Week? To heal the wounds of Christ in His Mystical Body, the wounds we too have inflicted on Him. …

“May this week be, by our manner of living and our silent fidelity, a week of great renewal for the Church.”

—Mother Mary Francis, PCC

A REALLY big sale!

My book is currently on MASSIVE sale at Ave Maria Press—it’s $2.

That’s right, folks. TWO BUCKS. That’s it!

That makes it a great time to get not only a copy for you, if you haven’t done it yet, but also copies for other people. Early Christmas gifts! Easter baskets! Presents just-because!

This is only happening at the AMP website, so go shop. Do it!

Jinx

Man I hate it when I jinx myself…

So I write a post about how to live Lent when life is Lent-y, and I think, oh this hasn’t happened for awhile…

AND THEN IT HAPPENS.

Sigh. I bring these things upon myself!

Well, not really. It has been a very long time since I’ve had any sort of pulmonary infection issues so I was probably due, to be honest. But I’m doing a course of oral antibiotics and it’s working beautifully, so I feel much better. I’m still dealing with some lingering chest pain, but I know that will get better as the rest of my body heals. I have a week to go on the antibiotics and I’m being very intentional right now in giving my body what it wants (liquids, rest, stretches!) and adding back my Peloton workouts when it feels right to do it. I’m hoping to jump back in with yoga this week (short classes!) to help get some mobility back to my lower right chest, because that’s where the pain was, and I need to start opening that area back up with some good (gentle!) stretches.

I’ve also learned that I can have a lung infection and my blood glucose will be fine. That’s weird, but oh well, t least I know now. The more I learn about blood glucose the more I realize it really is a crazy thing!

So the reason it’s been quiet around here is because of all of the above. I’m very glad to be on the upswing!

Currently on the needles: a long shawl with an interesting construction, which is being knit up in silk! I’ve never knit with silk before and I’m really enjoying it.

Living Lent when your life is pretty Lent-y!

There have been a lot of times in my life when Lent rolls around, people ask me what I’m doing for Lent, and I’m thinking, “MY LIFE IS CURRENTLY LENT.” (Not the case this year.)

February and March used to be pretty “sick” times in my life—it was near the end of the school year so my body was getting tired of the early wakes and the heavy schedule. I’d be doing IV antibiotics, or I’d have TB (That was a fun Lent!), or I was in the hospital for some sort of other thing or another.

Life was pretty Lenty.

Pre-transplant, I was not allowed to fast. And I’m not allowed to fast now because I’m diabetic. There was a, oh, five year period where I could fast, and I tried it, and wow, I was so not good at it. Really, really bad.

But all this to say that some years, your Lent chooses you, and you really might not have to do much else.

If you’re in that position, don’t be hard on yourself. Remember what happened to St. Teresa of Avila: One Lent, she had all these great plans for the Lord. She was going to suffer ALL THE THINGS! She was going to do ALL THE PENANCES!

And then she got sick and was in bed for all of Lent. And she decided to complain to the Lord about this.

“Lord,” she said, “I had all these GREAT IDEAS FOR LENT and then you RUINED THEM. (I’m paraphrasing.)”

“That was your plan for Lent,” He said. “This is my plan for your Lent.”

Oh. Well then.

St. Teresa did not do all the things.

It’s OK if you can’t make it to stations every Friday or daily Mass or do whatever other penance you’ve come up with. Bodies can be super dumb. Or, sometimes, what the Lord wants from you is something else.

Either way, don’t beat yourself up if your life is super Lent-y at the moment and you cannot do ALL THE THINGS! Do what you can do, offer up what you can’t, and remember St. Teresa.

"Joy Depends on the Cross"

Botticelli, “Holy Trinity” , tempura on panel

The title for this post is the epigraph for my book. It took me. long time to find it—I wanted something perfect to encapsulate what I thought the book was about, and it had to have the right mix of seriousness and joy. Upon re-reading The Sign of Jonas while I was writing Living Memento Mori, this quote jumped out at me.

But a funny thing about different types of Christianity is how often we forget the truth of this statement.

I was recently reading Jinger Vuolo’s (nee Duggar) new memoir, and the “prosperity gospel” idea (aka, “God as Vending Machine”) is detailed throughout. The church she was raised in was huge on this (For context: Gothard was the founder/leader of her church):

“Gothard taught me that if I was suffering, there was a good chance it was because of some hidden or secret sin in my life. I was disobeying God in some way, and that was why I was experiencing pain and hardship. He even said that “most illnesses today are the result of bitterness, or guilt, or just lack of love.”…

“Just as problematic as Gothard’s opinions, however, was his guarantee of success for everyone who follows his rules. Gothard taught that the future I wanted—husband, kids, financial freedom, and health—would be mine if I followed everything he was teaching. He claimed his seminars were the key to success, and I was sure to get all those blessings if I obeyed. In other words, I was being taught a version of the health and wealth gospel.

“The health and wealth gospel is simply this: God wants to give His children money and physical health, but they must have faith that He will bless them. The size of someone’s financial success is proportional to the amount of that person’s faith and obedience. Here’s what Gothard said about money: “God uses riches to bless those who obey his commandments, and he removes money from those who violate his commandments.”…

“When I was a teenager, I would have said that I rejected the health and wealth gospel. Gothard himself would have criticized what prosperity preachers were teaching. But I did believe that obedience was the key to success in life. I was convinced that if I obeyed, God would reward me with the blessings. In other words, I believed the health and wealth gospel. ”

As I read, I kept thinking, but this isn’t the gospel at all.

The radical truth of the Incarnation is that it led to the cross. It led to extreme suffering. And it happened to the most perfect Man who ever lived.

To paraphrase St. Elizabeth Ann Seton, If Christ went to the cross, how do you think you’re going to get out of suffering?!

You’re not. There’s no way you’re going to avoid it. It doesn’t matter how good of a Christian you are, how perfect of a person you are—suffering is going to happen to you.

“Life is pain, highness,” says Westley in The Princess Bride, and it’s true. There’s no wonky interpretation of the gospel that’s going to change that. Almost all of the apostles died horrible deaths. St. Paul was beheaded. If you read the lies of the saints, you’ll see that a lot of them had severe trials to go through. That’s part of Christianity-—the part we don’t talk about very much, because we don’t want to be downbeat or negative.

But joy fully depends on the cross. We only get eternal joy, eternal happiness, because of the cross. There is no eternal bliss without death on a Friday afternoon.

Today (February 11) the Church celebrates the feast of Our Lady of Lourdes. Our Lady appeared to St. Bernadette Soubirous, a very poor, often ill girl whose family lived in a former jail. In one of the most poignant parts of the apparition, Mary told Bernadette, “I do not promise you happiness in this life, but in the next.”

Yes, we want to be happy here. We don’t want life to be an unending “valley of tears”. But at the same time, we need to remember, as St. Therese said, that “this world’ our ship and not our home.”

There are lots of “benefits”, if you want to put it that way, to following Christ. But He didn’t say it was going to be easy.

Lent-y goings on!

So, Lent is upon us, and that means it’s time for me to ramp up talking about MY BOOK.

You can get it everywhere ( here is the Amazon link, you can find more links to buy here) ! You can even get a signed book from me! Just contact me—signed books are $20 and that includes a prayer card and a bookmark, and shipping!

If you are in the Columbus area, I will be doing a book signing at the Columbus Catholic Women’s Conference next weekend (Feb. 18) at the Ohio Expo Center—details and tickets here.