Therapy

(No, not that kind of therapy.)

So I had my seventeenth yearly post transplant checkup (well really 16th, since there wasn’t one when I first got my new lungs, haha). It went well. My numbers are rock solid and perfection. “Everything’s coming up roses!”

But.

(You knew there was a but.)

As you probably know, I do not like exercise. I missed out on the genetic lottery in this sense—my brother runs marathons (Boston, New York, etc.) and coaches cross country. My sister played high school and college tennis, runs, and her husband (who is not connected to me genetically, obviously, but still) runs marathons as well, and my sister in law was a gymnast, and also runs. I am surrounded by super fit people who like to work out and are good at doing things with their bodies.

I am….not.

Now, over the this year, I’ve been working at getting better at working out because I know I need to be in better shape. At my clinic visit, my transplant coordinator said I absolutely have to be working out 5 times a week for 30 minutes. Must. Have to. Non-negotiable.

Then she said the magic thing. “Just think of it as doing your CF therapies.”

CF therapies—or “therapy” as we called it in our house—consist of nebulizer treatments and doing the vest or other postural drainage techniques (PT) to get the sticky mucus out of the lungs. This took, at minimum, 30-45 minutes, twice a day. In the evening it took longer because I did another nebulizer med, and if I was doing inhaled antibiotics, it could easily take 90 minutes to two hours. This was twice, or three times, a day. Every day.

I had never thought about exercise as being a “replacement” for daily therapy. Because honestly, therapy wasn’t fun. I mean it could be—I could watch movies and things while it was on—but I couldn’t really do homework because if I looked down the nebulizer could drip on my work or the textbook; I couldn’t read because of the vest vibrations (shaking books!). I could do some work on a computer though, and I did that more often in the early 2000s (pre-transplant). But it was a pain.

Exercise is once a day, for thirty minutes, which is way less daily time than the therapies took. It’s one and done. I don’t have to like it, but I do have to do it, the same way I did therapy.

For some reason I had never made this connection. But once it was made, it….made sense.

So I am almost a week into this and it’s been….not bad. I’m using the Peloton app, because it adds music and fun instructors, and it’s captioned (hallelujah!), and it tracks my heart rate on the screen so I don’t have to be looking at my watch all the time. (I do not have a Peloton machine. I use the machines in the complex gym—there’s no bike there, so it’s all treadmill stuff.)

Right now because I’m starting with 20 minutes on the treadmill, five times a week.

I don’t have to like it, but I do have to do it. Because I want to be here for Patty and Maddie and new baby DeArdo. That’s worth it to me. (And hello, there are Broadway themed walks, sign me up.)

So, here we go.

Mid August Daybook

Flowers at the local French cafe

Outside my window::

Sunny and breezy—great late summer weather.

Listening to::

The Rings of Power soundtrack. I’m very excited for the show to start on September 2!

Wearing::

crops and a gray t-shirt—a uniform of sorts for me.

Grateful for::

Conversations with Di, Patty, and Johnny.

Good Echo results!

new knitting projects

Pondering::

Functional fitness. As I wrote in the last daybook , this is important in just keeping up the house and doing regular things, but it’s also important in giving my body the tools it needs to “get through” things. If I’m stronger at the outset then I have less to lose if/when I get sick.

Like right now, I have a sinus infection. Wheeeeeee again. I’ve had a lot of them sine 2020, and that’s unusual for me. I had a long-overdue sinus surgery last December, but that didn’t seem to solve the problem the way it normally does.

So right now I’m on Cipro, which is a great, super powerful antibiotic which will clear up the sinuses—but will also mess with my tendons. So that is a bummer when it comes to the whole “functional fitness” thing, because I really do not want to rupture a tendon.

This means that my workouts have to change—I can’t be doing things like treadmill workouts. So I’m doing gentler things, but things that my body still needs, like yoga/stretches for my body, especially my legs (because my legs get really tight), and things I can do that don’t put a lot of stress on my knees or Achilles’ tendon, because these are the areas that tend to get grumpy with me. I’ve gotten some permanent injury to my right knee because I didn’t listen to my body when I’ve been on Cipro, so I don’t want to repeat that.

It’s a fine line, but it’s one that I have to figure out how to manage, and I think I have a good plan for the next two weeks that I’m on this medication.

Reading::

The Silmarillion,* The Book of Lost Tales (Part 1),* (yes, lots of Tolkien right now!) The Crossing* (my parents are really into this book series and so I’ve started reading them too), and Memories Before and After The Sound of Music.*

In case you’re wondering how I read multiple books at one time—I was an English Lit major in college (and Political Science), so I’m very good at reading multiple books at one time! I’m reading Silmarillion almost like I’d read it for a class; I take it slowly because there are a lot of names and places and things to remember. I try to read 1-2 chapters a day. The other books I’m not reading like that. But I’m very good at juggling books and plot lines.

Creating::

A '“stupid easy” shawl with some of the gorgeous yarn I bought on the yarn crawl!

The pattern is Casapinka’s “Woven”, which I had bought and forgot about in the wilds of my desk, but as part of the house reorganizing/decorating project, I was going through papers and found it, and then decided it would be perfect for this yarn. Ravelry notes here. I still have two shawls to block as well.

(Yes shawls are my favorite thing to knit. They’re so diverse and you can have o much fun with yarn and technique! BUT color work is also really fun. And I’m liking cowls. So cowls/shawls are my favorites right now.)

To live the liturgy::

Today is the feast of St. Bernard, Doctor of the Church and Abbot. Did you know he wrote “O Sacred Head Surrounded” (or “now Wounded” in some translations)? I didn’t! I love that hymn. He’s also featured in Dante’s Paradiso. (The last part of the Divine Comedy. If you haven’t read it, I recommend it!)

Around the house::

Still going on the big project but things are coming together! Yay!

From the kitchen::

I will make another load of Sourdough sometime this month to incorporate Diane’s suggestions to my last attempt! I’m actually really excited. I need to feed Sammy the Starter today.

Plans for the week::

All day doctor extravaganza on Monday for yearly testing. WHEEE. Since I’m on Cipro I won’t have to do the six minute walk, which I sort of hate anyway, so that’s a plus!

Maddie: Seven Months!

Brace yourselves, everyone. Maddie is seven months old. Ahhhh!

Here’s the monthly update!

CAN DO:

Sit up for a good amount of time!

Blow raspberries and babbles a ton. She loves blowing raspberries!

Getting really close to crawling!

Mama thinks she’s getting another tooth, and she has her first dental appointment!

Say Maaaaaa….we think :)

Feed herself!

Recognize people in pictures

Playing peek-a-boo!

LIKES:

Giving Duke some of her food. (She’s eating some solids, and she will drop things for Duke to eat. He loves it.)

FOOD! We love food!

Giggling

Here she is her in favorite chair! She can sit here and supervise whatever Mama is doing.

Seeing people. She’s so, so social. And then talking to them.

Audiobooks!

Her pool

Watching English Premier League with Dad on Saturdays

Still loves playing with her feet

Going outside

When grandma (our mom) blows bubbles at her on FaceTime!

Songs

Adventures. She goes on a lot of them. Car rides are so fun!

She and Duke are very good buddies. (Duke is their dog)

At the local coffee shop with Mom and Fishie!

DISLIKES:

Being ignored, ha!

She doesn’t seem to like bananas—as in eating them as they are. She likes them pureed, and she likes to play with them, but eating them? Nope.

Cold food—still not a thing she enjoys!

Sleeves!

When she can’t see her mama—although with the peek-a-boo playing she’s getting OK with this. :)

Gallery:

One month

Two months

Three months

Four months

Five months!

Six months!

Last Saturday :)

Sourdough!

Last weekend, I made my first sourdough loaf!

I know, I know, everyone was doing this in 2020. But I didn’t have a starter in 2020, and I didn’t want to mess around with making one.

So when I visited Diane and crew this summer, I made a point of asking for a sourdough tutorial, because Diane makes it frequently. And she obliged me!

Patty enjoys the fruit of her mom’s labors—sourdough and penne with homemade sauce!

I wrote it down carefully. I asked questions. I was given some of her starter, which was carefully placed in my suitcase.

I fed it for about a month, every other week. And then this weekend, once I had all my equipment, I made it.

And it was yummy!

The nice thing about it, I think, is that you don’t have to knead it—at least not in Diane’s recipe. You do stretch the bread a few times, which is like kneading, but it’s not the intense kneading you need either by hand or with your stand mixer. That was nice.

Starter after sitting out all night…

I was a little worried after adding the flour and water because it seemed so dry. But Diane said it was OK!

It looks dry but it’s FINE!

And indeed it did become more and more “dough like” as the process went on.

After the first fold

After the second fold, about to go into the proofing basket. Lovely!

It went into the floured proofing basket and flopped perfectly into the Dutch Oven…..and came out looking so pretty! And it was delicious!

It has a nice crust, sharp but not so sharp you can cut yourself with it. It’s chewy, but not too chewy. In short, it’s good bread, and I might be addicted to making it now. Next time I will let it rise a little longer so that it’s a bigger loaf with a slightly more pronounced sourdough flavor.

If you want to try Diane’s recipe, here it is! (With my notes) (NOTE 8/9/22: The document has been updated!)

Have you ever made sourdough? How’d it turn out?

Everybody Hurts

(And yes, I did choose that title based off the song.)

One of the things I’ve come across a lot in 40 years is the idea that if you are financially well-off/secure, that you don’t suffer. It’s gotten to the point where I feel like I need to write about it here, to disabuse folks of this notion.

It’s usually not put that baldly, but that’s the gist of a lot of things I hear. Like, “Oh, a homily on suffering at a wealthy parish? They don’t need it!” Or “Well you’re financially secure, you don’t know what suffering is like!”

That’s…just not true.

Let’s start with the obvious and quote Scarlett O’Hara: “Money does help.” Yes, it does help. When my family was dealing with me being in the ICU, we weren’t worried about how we were going to put gas in our cars or keep the electricity on. True statement. Money helps.

However—my parents had a child in the ICU. A child they were being told was going to die. They had two other children to take care of at the same time, and potentially prepare them for the death of their sibling, while they were dealing with the possible death of their daughter, and maybe thinking they were going to have to plan a funeral. And at the same time, they were also dealing with my siblings’ schoolwork and teachers and all that jazz.

Yes, money was helpful—but they were suffering.

Life doesn’t look at your W2 or your 401(k) and go, “you know what, I think I’ll leave you alone because you have a good bank account.”

There are lots of different types of suffering, and financial poverty isn’t the only kind. There’s emotional suffering, physical suffering, combinations of all these things! Saying that being wealthy/well-off/ middle class negates any possibility of suffering “just ain’t so”.

This also goes with the whole, “Oh you’re thin I’m so jealous” thing.

Diane and me, May 2005

Folks. Look at that photograph. This was taken about a month and a half before transplant. I felt awful in this photograph. We’re at my grandfather’s surprise 80th birthday party, which I went to because it was his 80th birthday, even though my body was like PLEASE LAY ME DOWN AND LET ME SLEEP.

I weigh maybe 90 pounds here. The week after this party, I went into the hospital for almost a month. The sweater I’m wearing is an XS and it’s still hanging off me (look at the sleeves). Diane has a healthy paleness about her. I look sick. I was not healthy. In the hospital I was fed TPN (nutrition through an IV line) and lipids (fat!) to get me to gain any weight. This is NOT HEALTHY IN BIG CAPITAL LETTERS. This is a person near death.

And yet I had people telling me that I looked so thin! And making comments about how they had hips, and I didn’t, in a way to make themselves feel better about their bodies! (Seriously, they did this.)

I WAS DYING.

And people were looking at me, being jealous of my thinness.

That’s a problem, folks.

So please don’t think that because someone is financial secure/thin/good looking/happy, her life is just all sunshine and roses and awesomeness.

Everybody hurts.

August Yarn Along--Christmas knitting takes off!

I went on my first “yarn crawl” on Monday and so that was a lot of fun! A crawl is basically visiting a bunch of shops that are all participating in the event; it’s a great way to visit new stores and get discounts and other goodies, like….TOTE BAGS.

The bag with….

My goodies inside! :)

The Carnation Yarn Trail runs through Michigan, Ohio, and Kentucky, and man, it’s extensive, as you can see on the map (scroll down)—it goes from Grand Rapids, MI, to just outside Louisville, KY! A lot of knitters will visit stores as a vacation or a fun thing to do with their yarn buddies, but I “just” visited two stores, though I am keeping this list for future reference.

First I visited 614 Knit Studio, which is on the north side of town. I’d never visited it before but it’s so gorgeous that that’s going to change! The top photo is of their ‘baby yarn’ wall and I bought almost all of the teal yarn for a dress for Maddie. I also picked up some Malabrigio Rios in Anniversario for me (that’s the pretty multicolored yarn!) that might be (yet another) shawl. :) Shawl knitting is my love language! I also got a shawl cuff so I can experiment with different ways to wear my many shawls, and some blocking pins that I think will work a lot better than the ones I currently have, which are sort of fiddly.

My second stop was Yarn it and Haberdashery, which is my “regular” local yarn store. I got the dark blue yarn you see in the photo for a Christmas project. (You can see the project on Ravelry here), as well as the knit picks needles so I can cast on a baby blanket without waiting for a current knit in progress to be done! :) (Yes I have a second niece coming, she needs a blanket! Yay babies!)

In progress we have:

*Chocolate Lily, where I have just finished the main body increases. That means there are two more sections to go before it’s off the needles!

*Christmas project (see link above)

And things that need blocked: Quindici and Take It All. (Seen below—quindici is the one done in blues)

Whew! That’s a fair bit of knitting and finishing to do.

Onto reading!

Above, The Silmarillion surrounded by the projects that need finished. :)

I’ve been meaning to read The Silmarillion* for awhile, but it wasn’t until a week or so ago that I decided to be serious about it. Thanks to this great reader’s guide, I’ve been making progress! This is very different from the Lord of the Rings books in that it’s very dense—I’m taking a ton of notes in the margins—but rewarding to read.

I’m also re-reading Cardinal Pell’s prison journals*.