A Chatty Seven Quick Takes

Linking up with Kelly!

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This is for my musical theater nerds!

I was thinking this week what the best Rodgers and Hammerstein musical is. (show, not film. In that category it’s definitely The Sound of Music, because it’s a fabulous film and I think it makes the original material better.) My vote is for Carousel, by a smidge (because I do like South Pacific); my dad supports South Pacific, and there was a vote for The King and I.

I think Carousel is the best for a few reasons: a fabulous leading man part; four good female roles (Julie, Carrie, Nettie, and Mrs. Mullins); a glorious score; and good use of chorus. The chorus actually has opportunities to do things often, as opposed to The King and I.

Is it perfect? No. I don’t think we need “Stonecutters” (and I think that was axed from the last Broadway revival), the whole “yes, someone can hit you and it doesn’t hurt at all” thing (eeeeek!), and the ballet can be too long. But, I think that we wouldn’t have had West Side Story, or Fiddler, or really any sort of true musical drama, without Carousel.

-II-

I started working with my Colonial Williamsburg yarn this week. Some of you may remember my extra special Yarn Along about that, and it’s taken me two years to figure out what to do with the yarn! So I’m going to do something simple, but, hopefully, historically accurate. I’m making a scarf, with slipped stitch edges, on size 8 needles. I didn’t want to do it on big needles because they didn’t have big (like, size 12) needles in Colonial times, I don’t think. But this yarn is thick, so I couldn’t do it on a small needle, like a size 5 or below. So I thought a scarf would be a practical, Colonial thing, and I have a lot of yarn, so it’ll be nice and long and warm.

The source of my yarn! Leicester Longwool sheep!

-III-

Reading: I read Where the Crawdads Sing, * and I LOVED IT. I really want to discuss it with someone! Highly recommend it.

I’m currently reading about five million things, but I’m also really liking Greek to Me, * because it appeals to two sides of my personality: A love of ancient Greek myth and culture, and word nerdiness. And book nerdiness!

-IV-

A note on the Mueller hearings, but a NON POLITICAL ONE!

One of the things that bothered me about the coverage was that people kept saying that Mueller needed questions repeated, like this was somehow a slam on his intelligence or “with it”-ness.

Guys. No.

I am crazy sensitive about this, because, hello, hearing impaired. I hate asking people to repeat themselves because I know they’re thinking I’m a dim bulb, or not paying attention, or flaky, or something. But really, I want to make sure I understood you!

I don’t know if Robert Mueller is hearing impaired. But I do know that we really, really should stop thinking that if someone asked for something to be repeated, that they’re stupid or cognitively challenged or whatever.

-V-

Nothing new on the book front yet. But please sign up for the mailing list! Then you get all the delicious news first and there might be fun things for subscribers! (Well, there are fun things—two printables I designed—but maybe more than that, who knows!) Sign up!

-VI-

July is like sports doldrums. Sigh. Once Wimbledon is over I just languish until sports pick up again in August. I don’t really like the NBA, and I’m a Pirates fan, so that’s sort of like constant baseball futility, but oh well. August and football will be here soon!

-VII-

I also joined a book club! Well, I’ve done it before. It’s called Well Read Mom, but this time, I looked into joining a group in my area, and there is one! Yay! I really miss discussing books with folks. I’m obviously not a mom, but any lady can join these! I love this book club because it’s not just current lit. There’s spiritual reading, plays, essays, novels….all sorts of things! It delights my little heart. (And this year Little Women is one of the books, which is so appropriate for my Orchard House dwelling soul!) Have you ever joined a book club or wanted to?

*==I’m an Amazon affiliate, so if you buy a book through these links, I get a tinnnny bit of money, which helps keep the lights on over here! :)

Seven Quick Takes--writing, pro-life ministry, and Washer Monster

Linking up with Kelli!

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Around these parts this week:

Doing the best you can with what you have

Prime Day deals—Prime Day is over, but if you haven’t checked in with Take Up & Read lately, we have a lot of gorgeous studies! Maybe it’s time to start Christmas shopping?

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This is sort of a…well, a sad take. But.

On Twitter this week I saw a woman writing about how she didn’t know how to get a casket for her miscarried child.

The Trappist monks of New Melleray Abbey provide infant and child caskets free to families.

Free. Gratis. No charge.

Go here, and scroll down to “child”, and select a size.

These are beautiful handmade caskets. In addition to the caskets, the monks will plant a memorial tree for your child, and remember your child in a special Mass. The parents also receive a keepsake cross made of th same wood as the casket.

If you need one IMMEDIATELY, call them at:

888-433-6934

They answer the phone 24 hours a day.

They also have a child casket fund, where people can donate to support this ministry, here.

This is such a beautiful service they provide. I know it’s terribly hard to think about, but I have had friends who have lost children to miscarriage. This makes one part of it easier—you don’t have to make your child’s casket or fumble around at a funeral home. The monks will do it, beautifully, for free.

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The book skips along! It’s done with copy edits so my editor has it now and is working on it. No cover art yet but the minute I have it I’ll share with you (subscribers find out first!)

-4-

This week I finished a long linen scarf I knit to use in the summer. I love it. It’s a gorgeous color. So I went to block it in my washing machine. I had run a test piece of linen before and it came out fine so I thought I’d be fine this time.

NOPE.

Washer Monster wanted to eat it.

via GIPHY

But my lovely maintenance man here saved it! Yay!

Yay! It’s saved!

I’m always amazed at how well linen blocks. It’s just great. Such a difference!

-5-

I’m on an Emily Blunt movie binge lately. I watched The Devil Wears Prada and A Quiet Place this week and I’m going to watch Mary Poppins Returns tonight. (My movie BF Colin F. is in it too. I do love his movies.)

-6-

Sometimes we live in Hoth, here in Ohio, and sometimes it’s in the 90s with a heat index giving us a temp of 114. Yeah, it’s that day. So, movie binging and working on house projects today!

-7-

It feels hard to believe that July is half over and that Target has school supply displays up. When do the schools in your area go back? Ours tend to go back in the middle of August now, but they get out before June.

Doing The Best You Can With What You Have

Under the Wave off Kanagawa (Kanagawa oki nami ura), also known as the Great Wave, from the series “Thirty-six Views of Mount Fuji (Fugaku sanjurokkei)”

I was talking to a friend of mine the other day, who, like me, has had some health problems. And we were talking about how the things you do to save your life can later come back and have unplanned consequences.

“I’m dealing with that right now,” I said. We talked a bit more about how frustrating this is—but then we asked, Would we have changed anything?

And the answer is, probably not.

So I thought I’d write about this.

*

After my clinic visits, we always have to wait for blood test results. One of them that we’ve been watching lately is called the A1c, which I talked about in the last post. Basically, it’s a batting average for your blood sugar. And ever since I entered menopause it’s been going up….and up….and up.

This is not good. The more sugar is in your blood, the more that can lead to lots of problems. Problems that I don’t want.

This isn’t CF related diabetes, because my pancreas still works. (I don’t take enzymes to digest my food, so that’s how we know….) But at the same time, my body is clearly becoming insulin resistant.

I’ve been on steroids for 14 years. So the thought is that steroids + menopause=unhappy A1c.

Now, I can’t go off steroids. I’m on a low dose—5 mg a day. There is a 2.5 mg dose. And I might try that. But the problem is, my body has adjusted to them, and my joints, especially like prednisone. A lot. I had CF related arthritis before my transplant and that is helped a lot by the prednisone. I notice when I miss a dose. So when I tried to go off prednisone a few years ago, my body said, “nope.”

Why am I on prednisone? Because I had a transplant.

Which saved my life.

But we know that prednisone has a lot of side effects.

*

Another area where side effects come to play? Cancers. We’ve talked about that a lot here.

And, not pred related, but med related—my hearing loss.

So, these are all things that have happened as a result of staying alive.

But—what were my choices?

Well, to take the meds, or die. Really. It was that stark, in a lot of cases.

So I decided to take the meds. And live with the side effects.

And that can be sort of sucky, to be honest. Because you do things to save your life, but then…there are consequences, and you have to be ready to deal with those. It’s a long-term gamble.

But, and I said this to my friend, we do the best we can with the information we have. We can’t think about 5, 10, 15 years down the road when we’re looking down the barrel of the gun right now.

If you’re in that situation, I know how you feel. I know it’s hard not to google and think about the future. But really, in my opinion, the best thing to do is to talk to your doctors, see what the options are, and then go with what is best—for you, for the situation, for what needs to happen to achieve a good outcome.

Does that mean you’ll be thrilled with what you have to do? Well, no. I’m not thrilled that I’m injecting myself with five units of insulin every night. But it could be worse.

This is what I have to do to stay alive—to see year 15, year 16, year 17….post-transplant.

Now, are there things I won’t do? Yeah. I’ve always said I wouldn’t go for a third transplant. That, to me, is a bridge too far.

But right now, I take the insulin, I adjust my diet, and I do the best I can with what I have.

Prime Day Savings on Take Up And Read Studies!!

Hi everyone!

As you know, I write for the Take Up & Read bible studies, headed by the amazing Elizabeth Foss. And since it’s Prime Day (today, July 15 AND tomorrow July 16!), you can save $5 on our studies!

Use the code PRIMEBOOK19 to save $5 on any book over $15!

This would be great for Christmas shopping or getting yourself the studies that you missed!

I really am so proud to be a part of this ministry and to see the beautiful work that we do in the hopes of getting more people to read Scripture. If you haven’t tried a book, pick one and try it now? Sales are so rare, so take advantage of this one!

Here we are all our titles:

Our first study, Consider the Lilies

Second: Stories of Grace

Third: Ponder, our rosary book, and my personal favorite! There is also Ponder FOR KIDS!!! :)

There’s True Friend, our study on Biblical friendship!

Flourish is our study on St. Paul’s letter to the Romans.

Call Me Blessed focuses on St. John Paul II’s Letter to Women and examples of Biblical Womanhood.

And our most recent study, Better Together, about hospitality.

Trust, Courage, Faith, and Transplants

I had a holy hour last week before Mass, and as I was paging through my Magnificat, I noticed a few things.

Do you see them, too?

Matthew 9:1-8

The Healing of a Paralytic. He entered a boat, made the crossing, and came into his own town. And there people brought to him a paralytic lying on a stretcher. When Jesus saw their faith, he said to the paralytic, “Courage, child, your sins are forgiven.” At that, some of the scribes said to themselves, “This man is blaspheming.” Jesus knew what they were thinking, and said, “Why do you harbor evil thoughts? Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic, “Rise, pick up your stretcher, and go home.” He rose and went home. When the crowds saw this they were struck with awe and glorified God who had given such authority to human beings.

And here….

Matthew 9:18-26

The Official’s Daughter and the Woman with a Hemorrhage. While he was saying these things to them, an official came forward, knelt down before him, and said, “My daughter has just died. But come, lay your hand on her, and she will live.” Jesus rose and followed him, and so did his disciples.  A woman suffering hemorrhages for twelve years came up behind him and touched the tassel on his cloak.  She said to herself, “If only I can touch his cloak, I shall be cured.”  Jesus turned around and saw her, and said, “Courage, daughter! Your faith has saved you.” And from that hour the woman was cured.

 When Jesus arrived at the official’s house and saw the flute players and the crowd who were making a commotion,  he said, “Go away! The girl is not dead but sleeping.” And they ridiculed him. When the crowd was put out, he came and took her by the hand, and the little girl arose.  And news of this spread throughout all that land.

Do you see it?

Before Jesus heals these people, he tells them to have courage.

A lot of people tell me I am brave.

I am not brave.

Doing what you have to do to keep on breathing is not brave. It’s necessary. Now, granted, I had to make the choice to go for transplant. If I hadn’t done that, then I wouldn’t be sitting here, writing this, precisely fourteen years later. In fact, as I write this (at 10:47 a.m.), fourteen years ago, I was in the OR. My surgery began around 6:45 in the morning (at least that’s when the epidural started, I think). So, yes, I made the decision to go for transplant. Was that brave? I don’t know. I don’t personally think so.

Really, though, a lot of the time, I did not feel brave. I did not have the courage Jesus is telling these people to have.

But as I looked at these verses, I thought, this is right. They need courage for what’s about to happen. Because it’s scary, to be suddenly plunged into a world you didn’t think was possible, something you had hoped for, but didn’t think would actually happen. It’s sort of terrifying.

These people had faith that Jesus could cure them. And I had faith, too. I’ve always had it. I’ve never doubted my faith. But did I have courage? Did I trust Jesus?

Ah. That’s the slow growing bloom of faith. Faith is the seed. But courage and trust? That’s later. That’s a result. It’s the result of a lot of dark nights and lots of tears and feelings of this is never going to happen.

And I can say that even if I hadn’t been transplanted. Remember, God is always good. I would’ve been cured, either in heaven, or here on earth. And I was lucky that I got my miracle here. Some people aren’t as lucky as I was. That’s the sobering fact.

Throughout, though, Jesus tells us to have courage, because something is happening. And it might be something great. But in the moment, there is fear. There is death, as we see with the little girl. But then…

life.

Even if it’s life on the other side of death. We know how this story ends. We know that death is not the winner.

Trust in Jesus sounds great, and it is great, but until you’ve really had to surrender your will, to say I have no control over this—that’s when you need the courage. It takes courage to trust in God.

Jesus knew that. And I think that’s why he tells these people to have it, to grasp it, to be strong in the moment. Because in the moment when the miracle happens, you might feel like you’re going to drown—save me, Lord, I’m perishing!

If I look brave, it’s really because Jesus gives me the courage to take the steps forward. It’s not my courage at all. It’s his.

My Dominican saint is Bl. Lucy of Narni—and yes, she’s the one C.S. Lewis used as inspiration for both the name “Narnia” and Lucy Pevensie. I’ve always loved Lucy. But remember, Aslan tells Lucy, “Courage, dear heart.”

We need to be reminded to have courage, to keep trusting.

Day In the Life: Yearly Transplant Testing

I thought that I’d give you a little glimpse into a day at clinic, but in order to get the most bang for your reading buck, I chose do chronicle a day where I do yearly testing—as in, clinic, blood draws, X-rays, CT scan, and a DEXA (bone density) screening. So come along with me on Monday’s trip….

6:30 am: Alarm goes off.

7:20 am: Out the door, to the hospital!

It’s not raining! Yay!

The hospital is only 12 miles away form my place, so that makes it easy to get there, but morning rush hour can be a beast. Fortunately, it’s not bad, and I get to the parking garage at 7:45, after being asked for the nth time if I’m a visitor. No, I am a patient. Deep sigh.

Excellent parking!

The hospital has a nature theme, so there are lots of animals and other nature-ish things around. In case you can’t tell, those big green things are acorns.

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

Registration is in the middle of the hospital complex and sometimes it can be a pain. But there was a nice lady behind the desk, the kiosks worked, I had my wrist band, and was on my way to infusion for my first appointment….

Up we go!

The tower building used to be the main hospital—I’ve spent a lot of time here. :) The fourth floor (4AE) where infusion is is where the adult CF floor used to be. It’s where I almost died and it’s where I waited the night my transplant came.

The 4th floor is also home—or was—to the PICU. So yeah, the fourth floor has lots of great memories. (Seriously, some are good. Most are….not.)

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

Since I was early, I got taken back early—yay!—into one of the rooms. Like I said, these used to be patient rooms. Now they’re smaller. Most of infusion is separated by walls and curtained off areas, but since I’m a transplant patient I go into an actual room.

Sometimes infusions last for hours. Really, the reason I go to infusion isn’t to get meds, it’s to get my port accessed for blood draws. So the room has a bed, and the other areas have recliners, if you’re staying. I’m not. This is an in and out thing.

My great nurse comes in and sets things up….

Fortunately no vitamin levels today, so only three tubes. We could not get that out of my veins. So—port!

The blurry part is the strips that have my ID number on them and get attached to various things when the blood goes to the lab.

And yes, everyone must wear PPE—personal protective equipment—when they access the port. Gowns, gloves, masks, and hair nets. It’s like we’re doing surgery here.

So, we’re running ahead of the game, but then my port decides to be dumb, so we have to wrestle with it for ten minutes, but finally it cooperates and we get the blood. Then we flush the line with saline and heparin, and de-access me. Yay!

I am free to go back down to the main floor!

Hallway out to the waiting room.

Doooown we go.

This used to be part of the old ER—the parking lot to the right is where we dropped me off the night of my transplant.

(Bunnies ahead!)

This used to be “main” radiology, and the little hallway you see above used to run between radiology and the ER. This also used to be the main hospital through way—if you went to the end of this hallway you’d reach the main lobby. But I digress!

I’ve been coming to this part of the hospital for twenty-six years. It’s very familiar.

As is this hallway, but now they’re changing it! I don’t know what to do ! :-p

8:40 AM: Chest X-ray

So I have my probably five millionth chest x-ray (that’s a conservative estimate), before which I ran into my post-transplant buddy Amber, who is also going to clinic. It’s always fun to see friends!

So, out of radiology, heading toward clinic, and passing the fish tank and the satellite gift shop.

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

To the elevators, and up to good old fifth floor CF clinic! :) Also been coming through this door for 35 years. :)

9:00 AM: Clinic

This is where I spent the bulk of my time. On a “yearly” clinic day, everyone comes in: the doctors, the dietician, the social workers—and things get a little more in-depth. (Not so much on the doctor end, since I see him every three months.)

*The dietician asks me to talk about what I normally eat: meals and snacks. She’ll then give suggestions. Right now, we’re dealing with weight loss and the silly A1c levels (more on that in a bit), so we want to make sure I’m eating the right combination of things. She made some suggestions, I asked some questions, and it took about a half hour, probably. I really like the dietician so that helps. :)

*My Doctor. I see one of the two docs on the team every three months. This time, he was happy with how I was doing, and we talked about the A1c thing.

Basically, the A1c is a test that looks at how your blood processes sugar all the time—it’s like a batting average. It’s how much sugar “sticks” to your red blood cells. For normal people, you want it to be under 6% For post transplant people, you want it to be in the low 6%, because the prednisone we’re one messes with how our bodies process sugar. So we aren’t aiming for normal people normal, but abnormal normal. :)

I had been testing my blood glucose levels (BGLs) for a few months, and my doctor didn’t think my numbers were really all that bad. (Again, we’re looking at abnormal normal here. Not normal people. ) He did say that if my A1c was up, then we’d probably have to start me on a low-dose, long-acting form of insulin. It wasn’t really because I hadn’t done what they asked—I lost weight, I’m being more active, and I’m checking my BGLs—but because I’ve been on prednisone for 14 years, and I’m in menopause, which, as we know, messes with hormones like nuts.

But my Chest X-ray looked good, and my PFTs were up a point, so lung wise, things are great. Sinus wise, things are great. I’m seeing all my specialists like I’m supposed to and I keep clinic informed of things there.

My doctor wanted me to do some other PFTs so I had to go back to the lab, but we’ll get there in a second. :)

*Social Work: Normally, they just come in and ask how I’m doing and give me a parking token. Since I’m working with some insurance insanity right now, we had more to talk about and they are going to look into some things for me which is massively helpful. So I was happy!

Finally, Pulmonary Function Tests, aka, PFTs.

Normally, when I say I’m doing PFTs, what I mean is I’m doing spirometry. Aka, the thing where you sit down, put clamps on your nose, and breathe in through a tube connected to a computer. You breathe easily for a few breaths (for me it’s two) and then on the third you take in a huge breath, like you’re about to go underwater, then blow it out fast and hard.

You then get results that look like this:

swirly bit is blocked out personal info. :)

Now, this is in liters, and I generally look at percentages. As of yesterday I had about 54% lung function, which is good for me, and that’s the “moderate restrictive defect” part. It’s not anything to worry about, it just says that at the bottom.

I also did two other kinds of tests which check how gases are diffused in my blood and other breathing related things. Those were also fine. So yay there.

11:00 Finished clinic, back to radiology!

I finished in clinic, said goodbye, and my nurse said she’d email me with follow-up things. I then headed back down the elevators,

past the fish….

And back to radiology.

This was a bone density scan that did scans of everything—we did hip focus and lumbar focus, and then the whole body. This is important because prednisone (don’t we love it?!) also causes issues with bone density and causes osteoporosis. Fortunately my bones are AWESOME. I hope they continue to be awesome—I haven’t gotten these results back yet.

FINALLY, the LAST TEST!

11:45 am: Chest CT

so heading back through the center of the hospital, to the Magic Forest!

And into the CT room:

This is just a regular old CT scan of my lungs to make sure we’re not missing any small things that might be happening that regular X-rays don’t pick up. Easy peasy.

So I was free, and said goodbye to the bunny, at around 12:15!

I was really hungry at this point, because I’d only had a little breakfast—you’re not supposed to eat a lot before clinic visits in case something scary shows up in testing and you have to have a bronchoscopy that day. (Yes, that has happened to me before.)

So I was hungry and had walked about a mile and a half, not kidding, in the halls of the hospital. I hit my move goal for the day at 3 PM, so I knew that I’d get a decent workout on this day, lol.

This used to be a longer day—there used to be more tests. So I’m fortunate that this was a pretty quick day and everything went well, except for the silly port being stupid! :)

Yarn Along #91

Hi y’all! Happy almost Independence Day (if you’re American)!

via GIPHY

I’m still working on my Dahlia scarf: it’s four skeins of yarn, so it’s long, but I’m in the third skein now, so I’m past the halfway mark. It’s crazy simple knitting, just garter stitch, so that makes it really easy to do while I watch TV (Wimbledon!) or movies, or if people are visiting and I want something to do with my hands while we talk!

The book is Greek to Me: Adventures of the Comma Queen, which I’ve been intrigued by since I saw it at Tattered Cover in Denver in April. which is about the author’s trip to Greece and how the Greek language influenced English.