Seven Quick Takes--the 60th of September

Linking up with Kelly!

-1-

In case you missed it, here’s what’s been going down around these parts this week:

Simplicity Series #1—Reset Day!

Stitch Fix Box #8!

-2-

The reason this post is entitled the 60th of September is because this month has seemed insanely long. Isn’t there a song called “Wake Me Up When September Ends?” That’s how I feel right now. It’s just been so long. And sort of crazy.

One of the big crazy-making things is that I’m in the middle of Doctor Roulette, which I really haven’t written about here, so I probably need to catch you up.

-3-

(If you’re not interested in medical stuff, skip this and go to point four, where I talk about BOOK THINGS!)

So, being post-transplant, and being fourteen years out, is….interesting. Obviously, I am INSANELY GRATEFUL to be at that marker. I am. Never think I’m not. But at the same time, it’s a Brave New World of Medical Stuff, because it’s rare. So when things happen, there’s not a lot of research to go on. There’s just…..talking. And guessing. And seeing what works.

Essentially, all summer we have been messing with insulin, because my blood glucose levels have been off. (I”m trying to keep this as medical jargon free, but when I say this, what I mean is my A1c, not my BGLs. If you’re confused, I can explain in another post, so let me know if you want that much detail into my life!)

So my team decided to put me on some long-acting insulin.

But……that didn’t work. First, it didn’t lower my BGLs, which I was testing twice a day, and second, insulin is a hormone. That means it can affect lots of parts of your body.

For me, that meant—headaches. Not sleeping. Weight gain (DAMN IT), and insanely inappropriate mood reactions. If Big Ben threw an interception I wanted to break things. If someone parked next to me at the supermarket, I became incandescently angry.

This is not appropriate.

And the scariest part for me? Forgetting things. Words. Ideas. What I was doing. This is not good. I rely on my brain, and words are my trade. I can’t be forgetting them! I need to be mentally sharp.

(But you’re never mentally sharp, Emily, says the peanut gallery….)

I did some digging and found out that when you have too much insulin—as in, you have WAY too much, and your body doesn’t need it—this is what happens.

And this is the problem. My body is weird. Not just the transplant weird, but weird for a CF person. I’m what’s called “pancreatically sufficient”, which is rare. It means my pancreas works like a normal person’s, not like a CF person’s. I don’t need to take enzymes to help digest my food, because my pancreas does it. I never had CF related diabetes.

And my A1c starting rising once I hit menopause—so there’s probably a connection there as well.

So, long story short, my team is sort of confused, and I’m seeing an endocrinologist the day before Halloween. That’s one reason I haven’t been writing as much this month, because things have just been crazy, but also my body has been through a lot, and I’m trying to be nice to it. Which means, chilling out, after all the non chilling out. :-P

There are some other issues, too, mainly that I don’t have a great track record when seeing endos, because they look at me and go, you’re really messed up, what do you want me to do about it?

But anyway, that’s at the end of October. Yay.

-4-

in the meantime!

BOOK THINGS!

People are starting to ask for interviews, which is….weird. I mean, good, but weird.

The cover is 99% done. I’ve seen it. I can’t show you yet. If you want to be the first to see it, subscribe to the blog!

It’s really pretty, I like it. :)

-5-

Hockey season starts soon and this makes me very happy!

-6-

I am going on retreat next week, so if you have prayer requests, I am honored to take them with me! Drop them in the combox, or use the contact page.

-7-

If you haven’t seen the Word on Fire team’s newest entries in their Pivotal Players series—Fulton Sheen and Flannery O’Connor—I highly recommend them! They’re great! Flannery is a really important influence for me, in how to live as a Catholic and a writer, and I write this quote from her at the beginning of all my journals:

I feel that if I were not a Catholic, I would have no reason to write, no reason to see, no reason ever to feel horrified or even enjoy anything. I am a born Catholic, went to Catholic school in my early years, and have never left or wanted to leave the Church. I have never had the sense that being a Catholic is a limit to the freedom of the writer, but just the reverse. … I feel myself that being a Catholic has saved me a couple of thousand years in learning to write. (The Habit of Being *)

So I love the Flannery film. It was also nice to learn more about soon to be Blessed Fulton Sheen—I had read some of his books, and I knew of him, but the film does a great job fleshing out what I knew.

(Also, in a nice twist, a college friend of mine composed the music for both films. Go Sean!)

And I really don’t think we can improve on Fulton and Flannery, do you? :) Have a great weekend!

*==Amazon Affiliate Link

Amber

“The Song of the Lark”

Amber has joined my buddy Sage.

It’s sort of funny. It used to be that CF kids knew each other more than I did—we’d have wards and camps and so people had lots of CF friends. I never did, because that was all on the way out when I was diagnosed. I knew one kid from my first admission—Elvis (yes, that’s his name)—but I never saw him again after those two weeks of my first admit. (Although, in a strange twist of fate, one of my best college friends was from his hometown, and his mom was his teacher.)

There was Jenny, my freshman year of college—we were on the same dorm floor. I don’t know what happened to her.

But post transplant, I met more people with CF. Sage. Piper. People on Facebook. Kathleen. And Amber.

Unlike Sage, I had met Amber several times. She was the second transplant at our center (I was first, a fact that was a bee in her bonnet for awhile. Cracked me up.). She was younger than me, around my brother’s age (she was born in 1986). She’d been diagnosed with CF the normal way—as a little kid—but she lived nearer the Toledo center so that’s where she got her CF treatment.

We were both writers—she wrote a book called Breathtaking about her experience—and we both went to small Ohio colleges. (She had started at Cedarville University, but couldn’t finish because she got too sick, and eventually graduated from Moody Bible College.) She had a husband and they had adopted a little boy named Noah. He started preschool this month.

Amber had been in rejection for about two years, but she was a force. I mean, I’d never met anyone who was so unapologetic about herself, her life, her goals. She just told you whatever she thought, right out. “You can’t say that to people!” I”d tell her.

“Why not?”

Eventually, some of this rubbed off on me in dealing with our doctors. Ha.

She was just so unapologetically her. Honest, open, passionate, feisty. You always knew what she thought. But she wasn’t mean. She was just open in a way that a lot of people aren’t.

For two years she’d been driving from her home in northwest Ohio to get treatments at The Resort, to try to keep herself alive. There was talk of listing her for a second transplant.

I last saw her in July, at clinic. Clinic days are Mondays and so generally you tend to see other pre and post transplant patients at the same time in the halls and labs and in outpatient radiology. We got to catch up a bit, which was nice, because we hadn’t in awhile. She was carrying around a portable oxygen tank (when I say portable, it really was—it could be slung over your shoulder like a purse), but she was still fiery. Still giving me crap for wearing a skirt to the doctor’s. :-p “Comfort!” She said. And she was right, but I told her I preferred to use my feminine wiles to make the doctors do what I want. I was kidding, and she knew it, and we laughed about it.

I had seen on Instagram that she had missed an outing with her son to the zoo on Labor Day. But I thought she was okay. I have a news feed filter on my facebook app—basically, i don’t see scrolling updates anymore—so I had completely missed that she had been admitted with pneumonia and they had bronched her and she was in the ICU while they figured out a long-term plan.

I messaged her on Wednesday, to ask her a question about treatment. It was my brother’s birthday.

I got from his birthday dinner that night to find a message from her husband—Amber had died on Monday morning.

*

I don’t know why I’m alive, still, and Sage and Amber aren’t. Part of it is the idea that their journey, what God wanted them to do with their lives, was “complete”, I guess. And I’m not done. Which, I mean, is fine, I like being alive. But why me? Why not them too? Why are their husbands widowers, why is Noah without a mom, why did George the dog never see Sage come home? Why? Why do my siblings get to have me, and their siblings don’t?

I don’t know. I know God knows, I know He has his reasons, but I don’t know how much that really helps right now.

In Amber’s case, she had almost fourteen extra years. Her transplant anniversary was September 25. In those fourteen years, she wrote her book, she traveled to speak, she got married, she adopted Noah. She had extra time that she never would’ve had other wise.

But she was still only 33. Sage got an extra year of life, she had a wonderful husband and family and the sweet pups and even sweeter nieces and nephews.

I’m older than both of them.

A lot of people, post transplant, experience the feeling that they need to live for their donor. That they’re sort of entrusted with continuing the donor’s life as well as their own.

I never really felt that—probably because my donor was older, so it wasn’t like another 23 year old had died. (I’m not denigrating my donor’s gift, obviously! OBVIOUSLY. Just trying to explain how I feel.)

But I do feel, now, like I’m living for them. Sometimes I know Sage wants me to do something, to be brave and to ride it out.

And now I’ll feel Amber yelling at me to be honest and tell them how I really feel and figure stuff out, dang it. To just do x.

Both Amber and Sage had strong faith. I know that they’re happy. (I mean, one has to be happy when beholding the beatific vision, right?)

But gosh, I miss them both.

Yarn Along #90: Fun with Knit and Purl! :)

So, getting away from the heavy stuff in the last post, let’s talk about yarn!

linking up with Ginny

So, Quince and Co. celebrated their birthday a few months ago, and they were having a sale on their first collection of patterns—sale meaning, if you were an email subscriber, you got a code for one free pattern from this collection! So I chose the Isla scarf, because, one, it’s a scarf, and I like those (obviously), but it’s also a fun pattern that does some nifty things, using knit and purl stitches. I’m knitting it in their Lark yarn, lupine colorway, and let me tell you, this is pretty great yarn. (The color description for Lupine is, “Deep periwinkle waving in Maine summer breezes.” Who can resist that?)

It’s slow going because I do have to pay attention to what I’m doing—not only are there pattern changes, but also needle size changes, which at first I was worried about, but it’s not hard. And one “repeat” of the pattern is 28 rows. So this isn’t really a great watching TV project, because I have to concentrate, but it’s still a lot of fun to work on. This might be a good sports knit, because I can watch the game but it’s not like there’s plot. :)

See those little rows? Those are from using the smaller needles. This is so squishy, you can’t even believe it.

Here’s a better look at the length….

I am, as usual, reading five million books, but the one you see here is for a Facebook Book Club. We’re reading Loss and Gain * to prep for John Henry Newman’s October canonization. I’m on track with the reading but not my contributing, bad me!

I’m also reading Gift from the Sea * (again) and Emily Ley’s books, Grace Not Perfection * and A Simplified Life. * September is the “new school, new year” season for me—does it feel like that to you? I always feel like I want to lay down new rails and set new habits and structures in place. (And keep your eyes peeled—I’ll have a post—or several—about this soon!)

*=Amazon affiliate link

August yarn along--a bit of lace

linking up with Ginny!

So, on Sunday I decided to try working on a basic lace pattern. I have to do lacework for my Find Your Fade shawl, and when I first tried it in January, I was really confounded by it! So I’ve been working on smaller projects to try to get the hang of it.

This is a horseshoe lace pattern bookmark…..

You can see why it’s called horseshoe!

This really isn’t hard. I know it looks hard! But the twisting happens just naturally as the way the pattern is written. The problem for me right now is that this isn’t knitting you can sort of pay attention to—you have to pay attention the whole time. The pattern repeats in sets of 8, but if you miss a row, interesting things happen. (Ask me how I know this….)

The pattern called for size 3 needles, which I don’t have, so I used size 4, and the yarn is from my feile shawl. It was just too pretty to sit in my stash!

These are long bookmarks. They don’t look this long in the pattern photo, but trust me, they are….

As for what I’m reading….

I’ve read The Lambs * before, and it’s just great. If you love stories about animals, the natural world, family relationships and….sheep, you’ll really like it!

I’ve also got this big stack—one library book, three pleasure reading novels, and a whole bunch of books for the Well-Read Mom year….

There are two more books for the year that I haven’t gotten yet, and two more that I already have and are on my shelves—The Picture of Dorian Gray and Little Women. (Of course I have Little Women! My house is named after their house!)

I’ve also created a list that sums up all the knitting projects in the pipeline right now—a baby blanket, a scarf (new pattern! Exciting! I don’t actually have a long scarf for me to use in the winter!), my Find Your Fade shawl—I’ll at least do the set up section again and get that on the needles—and a cowl I’ve been wanting to make forever!

A Chatty Seven Quick Takes

Linking up with Kelly!

-1-

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!

-1-

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?

-2-

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.

-3-

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.

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.

Yarn Along #90 (AKA, finishing the WIPs!)

Oh my gosh, so much knitting stuff to tell you! :)

Settle in….

So one of the things I made a priority when I moved to Orchard House was finishing my works in progress! I had four going on, and now I have one so I am insanely happy about that.

One of them, the sans kerchief, is basically a really big linen square, and it has a ton of mistakes in it, so I basically used it as a big swatch, to see how linen works. I did it in Quince and Co’s sparrow (truffle colorway, gorgeous!) and I even put it in the washer and dryer, and it held up! So this is my linen “full of mistakes” swatch. :) But it’s off the needles and done and I’m sure I’ll find some uses for it around the house.

(No, there is no picture of it. :) )

I started another linen project: The Dahlia scarf with the sparrow yarn, in eleutherea this time. It is gorgeous.

Here it is, before I wound it:

Really, I wanted a lightweight, long scarf I could wear in the summer and not melt. :) So I chose this nice blue. I also had made another scarf in this pattern—the main photo at the top.

That was one of the WIPs and I just cast it off. It’s not as long because I ran out of the original color yarn and stupidly didn’t buy two skeins when I should have, so it’s got a bit of contrast yarn at the bottom, but I didn’t want to do the whole rest of the scarf that way, so I just cast off. But it’s lovely anyway!

The third project I’m working on is actually a gift, so I’m not going to show it here, and it’s not completely done yet, but it will be by the time I’m going to give it! :) It’s one of my basketweave scarfs, and y’all know what those look like. :)

So currently, I have three WIPs—the new Dahlia scarf, the gift, and the supermoon kerchief that I started eons ago and really need to finish! :)

I’m reading Susan Branch’s Girlfriends, which I was lucky enough to find a copy of, since it’s hard to find! I’m also re-reading my opera guides because I’m re-watching Wagner’s Ring cycle, because I’m a nerd like that. But it’s actually really good knitting music. :)

Yarn Along #89

I’ve finally cast off my shawl, and now I’m in the process of weaving in the ends and then blocking it. Yay! I can’t wait to wear it!

This shawl has taken me a long time and part of it was because of the move, and then getting my blocking supplies from my parents’ where I stashed it before the move….but now we’re all caught up.

I was just in Denver for my sister’s bachelorette party, and while I was there I got to visit Tattered Cover, an independent bookstore chain there. It was pretty awesome, and of course I got a lot of books:

I’ll have more on Denver in a travelogue post later this week or next!

What are you knitting or reading? Share with me!

Yarn Along #88

Linking up with Ginny!

I’m in the last stretch of my Feile shawl. I’ve really enjoyed knitting this so I’m sort of sad to see the end coming, but I can’t wait to wear it! It’s so pretty!

I’ve heard about Peace Like A River for YEARS—seriously, a child life specialist told me about when I was probably 20 or so—so I figure it’s time to read it.

Once I finish the Feile I’m not sure what I’ll do! I want to use the yarn I got at Williamsburg but I don’t know what to make with it! I’m thinking I might go simple and make a cowl or a scarf. Or maybe a hat.

Joy In the Morning (OR: How I get up every day and do life)

My siblings and I on my brother’s wedding day.

Warning: This might be a sort of rambly post. Settle in.

I was visiting my therapist last week. Yes, I see a therapist. I have since I was 17. A lot of people with CF do (not all, but a lot). I have no shame in telling you that.

So anyway, I was at an appointment with my therapist, and we were talking about how I was a bit maxed out on doctor visits. I mean, in almost thirty-seven years of life, I think my quota’s been hit, right?

And that doesn’t even count the other “stuff” we do—Mom accessing my port every month, the meds I take (which are vastly less than pre-transplant, btw), the blood glucose tests I’m doing twice a day now, etc. It’s a lot. It’s less than pre-transplant in some ways, and more in others. I have a colonoscopy every five years, which means one next year. I have a mammogram in April, because my mom had breast cancer and so my sister and I have to start our mammograms at age 37 (ten years before Mom was diagnosed). And then there’s dentists and eye doctors and the things normal people do.

So, yeah, it’s a lot.

This led to talking about compliance, which means, doing what the doctors tell you to do. And I told a story that I thought was illustrative.

When I was about seventeen, I was having a regular clinic visit, an I saw a sign on the wall of the exam room, saying that if you were 95% compliant with taking pulmozyme (one of the CF meds), you’d get a prize at your next clinic visit, see your nurse for a chart to win! Stuff like that.

Now, I never did these, because, generally, I was too old. This stuff was generally for the smaller kids, to get them in the habit. But what I thought was interesting was that the center wasn’t pushing perfect compliance.

Because that doesn’t exist.

Now, look, I’m not saying I was a slacker. Because I wasn’t. My mom, for one, wouldn’t let me be, even if I was disposed that way. I take my meds. I did my treatments. But yes, sometimes there were times where I put in a few minutes of precious sleep over a “perfect” Vest treatment, when I was in college. Sometimes I just went to bed. Not often, but sometimes. I wasn’t “perfect”, and I’m not perfect now. To be “perfect” now, I’d be a MESS. I’d be taking meds all day long, worrying about timings and if this was going to interact with that and how does this work and oh my gosh my brain is going to explode!

I take all my meds, and I take them twice a day. Is that perfect? Well, no. It’s not optimal. If can affect absorptions. *

But here’s the thing—I want a life. I don’t want to live in a glass bubble.

I went to school. I did activities. I rode bikes with my friends and went to the pool in the summer with them and then we went to the coffee shop and played board games. I had sleep overs, where I didn’t bring my equipment! I went on choir tour! (And yes, I brought the mini nebulizer!) I went to college.

Honestly, if my parents had tried to wrap me up in the bubble, I would’ve had a fit. I always wanted to be like everyone else, as much as possible. As Erin once said in a Home Town episode, I’m like a wild pony, and I need freedom!

(Not too much freedom. But enough freedom.)

So anyway, talking about all the things I had to do every day, my therapist then said, well, how do you do it? I mean, what gets you up in the morning?

And then I said, “well, that’s sort of what my book is about.” (Because it sort of is. Sort of. The book is sort of about a lot of things! )

But here’s what it comes down to:

Yes, there are a lot of things I have to do in my life. More than the average bear, that’s for sure, so when people say “well, you just have to suck it up and do X,” I want to roll my eyes, because that’s a big chunk of my day. (I’d wager it’s a large part of everyone’s day. As my grandfather used to say, “that’s why they call it work!”) But yeah, for me, and for other people like me, we have a lot of stuff on a daily basis that isn’t fun but must be done, and you just do it and don’t whine about it.

But what gets me up in the morning? Well, a lot of things. I’m very in touch with my inner child and I get excited about really little things. When I was working in the Senate, a lunch date with my Dad was enough to make me excited for the day. Today, it’s stuff like, a package is coming in the mail! It’s a hockey night in Pittsburgh! I get to write today! Oh, this book comes out! My book is in at the library! Chuy’s with Mary!

I’m very easily amused. And that helps me, I think, because it overrides a lot of other things that are not so fun. (Like making myself go to the gym. And poking my fingers. And doing doctor paperwork.)

But a big part of this, and this is what I’d say to anyone facing a chronic illness, is this:

Go live your life!

You really, really, really cannot hole up in your house and be all sheltered. You can’t. GO LIVE YOUR LIFE. Go outside! Do things! Be free! Have fun! Go to the park! Go swimming! Pet a dog! Whatever!

Yes, treatments are vital. YES, compliance is important—if I hadn’t been a compliant patient I NEVER would’ve been listed for transplant! But if you’re caught up in PERFECT, then…..you’re going to miss things and your life will be so small.

Seriously. Do what the sign says.

Live your life. Take your brain with you.

*: As far as absorptions: the only meds I take that NEED to be taken around the same time every day are my immunosuppressants (the prograf). That’s important. However, I am also far enough out that if I’m off by a few hours in a dose, the world will not end. When I traveled to LA, my nurses told me to just take the meds on LA time and not worry about being exact. I used to take my meds exactly at 8 AM and 8 PM (even rushing to the lobby of the Ohio Theater to take meds before a symphony concert started). Now, it’s generally around those times. I’m not quite as OCD.

The meds I’m talking about here are things like my nexium and magnesium supplements. You’re not, really, supposed to take them together. But if I didn’t, then I’d be carrying around meds all day and thinking about when to take them, as opposed to thinking about things more worthy of my brain space! It’s not a huge deal to take them together. But yes, some meds do have to be taken at certain times, and when I do those (like home IVs) then, yes, it’s on the dot as much as possible. You usually have about an hour leeway on either side of the dose time (for example, if the dose is due at 6 PM, you can do it at 5 or 7, but not 4 or 8.)

Ash Wednesday Yarn Along!

It’s Yarn Along Time!!!! :)

And it’s Ash Wednesday, so happy Lent to you! And yes, I do mean “happy” Lent. I really like Lent, probably because: 1) I’m a spring baby, and 2) I was born on Good Friday. So, I like Lent. And I also need discipline every once in awhile (who doesn’t), and the spiritual rigor of it, the peeling away of the non-essential, is a good thing.

Anyway, to the yarn!

OK, so the details:

This is the Feile shawl, which I am loving. I love how the stripes change—do you see how they had a sort of neat pattern going on, and then switch to solid stripes? Love that. Eventually, the contrast color, the blue, will become the dominant color as I work toward the end of the shawl, with the white being the contrast. This is a really easy shawl, but the fun is in the slight pattern changes. The thing that’s going to be a pain is all the end weaving in! But oh well.

I’m using Frabjous Fibers yarn, the Mad Hatter base (sport weight). The white speckled is Victorian China, and the blue is called “Muchness” (seriously, isn’t that great?). I’m using Knitpicks sunstruck needles, size 4, on one of their interchangeable cables.

The book is a great one for Lent, I think: Catherine Doherty’s The People of the Towel and Water. It’s about doing every day activities as prayer—really being present in the moment, and allowing everything you do to be prayer, working for God, even when you’re sweeping or cleaning or writing (or knitting!). Catherine founded Madonna House, and I’ve been reading some of her writing lately. I recommend it!

Yarn Along #86

Linking up with Ginny!

I finished my shawl!

I’m definitely getting faster at this pattern the more I do it; this time it took me a little over a month. Not bad. (And of course the crazy cold days when I couldn’t do anything but stay inside also helped.)

I’ve started my Find Your Fade shawl. Right now, this is a pattern where I have to pay attention to what I’m doing, because I’ve had to start it over twice—once because I had too many stitches, and once because I forgot what row I was on and knit the wrong thing….sigh…..so this represents my third attempt. Fortunately I love the yarn! (I’m doing this is Knitpicks Hawthorne yarn, on Knitpicks needles). If you click the Hawthorne yarn link you can see all the colors I’m using, because I used that kit. I’m hoping to finally get out of the first section today and start the lace bit. I’m a little nervous about this because even though I understand the technique involved, I’ve never done lace before…..so fingers crossed! My ravelry notes are here.

As for reading—last night I stayed up late to read The Winter of the Witch *, the last book in the Winternight trilogy, which takes place in Medieval Russia and blends fantasy and history. They’re so good, and if you haven’t read them, I do recommend it. I love Russian history anyway, so that helped me get into these when the first one came out a few years ago.

I’m still chugging my way through Villette although I’m getting a little annoyed with Lucy Snowe….not surprising, I get annoyed with lots of Charlotte’s heroines. I think I’m going to start The Terror next, or The Sea Queen, * but I think with The Sea Queen I’ll have to re-read Half-Drowned King first….just to make sure the story is really fresh in my mind again. Can you tell I’m on a myth/fantasy kick? (These books are Norwegian stories, based on myth and legend. Very cool and very well-written.)

*=Amazon affiliate link

Yarn Along #85

Winter is really killing my soul this year—it’s been so cold that the cold is always in the house, you know? You’re sort of always cold, and I don’t want to crank up the heat because then I’ll have an astronomical bill in February (the heat company here is….um….rather iniquitous when it comes to their rates). So at least knitting my shawl helps keep me warm!

I’m re-reading Villette and trying to see if I like it better after about 15 years have passed since I read it first. Charlotte Bronte was pretty anti-Catholic, and this book highlights that, so there are definitely parts where I just have to roll my eyes. It’s also annoying that there’s a lot of French in it which is translated in the back. (My French is decent, but not perfect.) Maybe that’s just this edition. But anyway, it’s a typical Gothic novel/ghost story/crazy romance in the Bronte sister vein, and it’s good reading for winter.

Seven Quick Takes

Linking up with Kelly!

—ONE—

I haven’t done this in awhile, so, hey, time to do one! Especially since we’re supposed to get a big old snow storm with insanely cold temperatures this weekend, so if you never hear from me again, at least you have this. (I’m kidding. I’ll be fine.)

This cartoon made the rounds a few years ago, but once again it looks like I’ll be living in Hoth:

—TWO—

There’s been a lot going on over here. I’m moving, so that’s the first thing—in March! So I have two months to get my place packed up. Which means that yes, I’ve been watching Tidying Up with Marie Kondo on Netflix, and I love it. (And no, she’s never said that you only need 30 books, where did people get this?! I have WAY more than 30> I have more than 30 cookbooks, probably—yes, I might have a problem.)

But I’ve really enjoyed the process. If you haven’t heard of her, the idea is that you get rid of everything that doesn’t “spark joy”, or that you need (like, a screwdriver, for instance. Or copies of recent tax returns.). So you let go of things that you’re just holding on to out of guilt or uncertainty or “just because”, and it’s done in categories: clothes, books, papers, “komono “ (miscellaneous—she divides it down further), and sentimental items. I’m on “komono”, and it’s mostly household stuff and knitting stuff that’s left.

—THREE—

Speaking of knitting, here’s this week’s yarn along! I’m making a drachenfels shawl, again. :) Deets are at Ravelry, here.

—FOUR—

In other news, I’m very close to submitting my book proposal! Oh my gosh. This has been a few months in the making but I think I’m in the home stretch! Yayyy!

And you can help me!

Please subscribe to the blog! This is something that really helps me with publishers. It shows I have people who care about what I write! So do that, and then follow my author page on Facebook? Every follower/subscriber is important! If you already subscribe, thank you! Mwah!

—FIVE—

The proposal is a memoir about my life with CF and transplant and how it ties into the idea that life is always worth living, no matter what’s “wrong” with you. Today is the March for Life, so yes, I feel it’s a timely topic. I’ve had people tell me that I shouldn’t exist. But I DO exist and so there. :-p

—SIX—

I made a holy hour yesterday, since I might not be able to get to Mass this weekend depending on weather. If you don’t make a holy hour (Or holy half hour, or Holy Fifteen Minutes!), can I recommend that you start? It’s restorative, transformative, energizing….it’s time with the Lord who loves you so much! Get thee to an adoration chapel! Or get to Mass early, if you can. God wants to visit with you!

—SEVEN—

And, also, if you missed it, Take Up & Read has a new study! We’re starting on Monday but feel free to hop in whenever! It’s called Call Me Blessed (here’s my blog post about it!)—and you can get it at other bookstores besides Amazon! Yay!!!!! It’s all about our vocation as women, our dignity as women, using women in the Bible and the writings of Pope John Paul II. I do hope you’ll join us!

Yarn Along #84: The Lambs and Wool Shawls

I’m about to be living in Hoth again:

Seriously, it’s going to be so cold—I’m hearing negative numbers for actual temps on Sunday and Monday. Time to batten down the hatches!

At least when knitting a shawl in winter, the shawl keeps you warm! I’m into the striping section which is easy and pretty relaxing so I can watch Tidying Up with Marie Kondo or Home Town while I’m knitting and I can stay sort of warm.

The Lambs * was a wonderful book about a lawyer who decided to close her firm and move to a farm in Virginia where she raised karakul sheep. The story is wonderfully written, and the book itself is lovely, with color photographs and gorgeous design. If you like to knit, like sheep, animals, or farming, or just a well-written, meditative memoir, this is the book for you.

*Amazon Affiliate link

Yarn Along #83--shawl progress and Mary Magdalene

Progress is being made! Yay!

If you’re new, it’s the Drachenfels shawl in Quince and Co’s chickadee yarn—here you see peacoat (a dark navy blue, not black), and camel. The third color that will be incorporated is gingerbread.

I’m reading (well, one of the things I’m reading) Saint Mary Magdalene Prophetess of Eucharistic Love*. It’s really good, in that it talks a bit about the history of Mary Magdalene, her presence in the gospels, and how that relates to Eucharistic Adoration today. I’m underlining an awful lot! I’m pretty passionate about the Eucharist, so this book is definitely inspiring me to get to Mass and adoration as often as I can!

Today I’m getting another package from KnitPicks, which has the needles I need to start either Felie or Find Your Fade….which one shall I start first?!?! The Drachenfels shawl is in a good place to stop; I have to do one more repeat of the main section and then I’m done with the first page of instructions. Which one do you think I should cast on first?

*Amazon affiliate link

Yarn Along #82: The Swatch Post!

Should this be Yarn Along Part A? Not sure. Because there will be a proper yarn along, as well, with shawl progress and book goodness, because who doesn’t need that in January (or anytime, really)? But this is the swatch and blocking post because I learned a lot from doing this and I wanted to share with you!

First, though, we’re going to talk about this picture. Is this not awesome? It’s called “A Visit from the Angels”, but notice that Mary is knitting! I love it! I also love how Jesus is like, “Oh, angels. That’s cool.”

So, on to swatching!

I have never swatched before. But I thought, with the big Find Your Fade shawl coming up, that maybe I should. So I swatched, using the same type of yarn called for in the pattern (Knitpicks Hawthorne). You check for gauge in this case post-blocking, so I blocked it and measured it.

Now, it’s not quite at gauge. I don’t really care about that, because it’s a shawl so it’s not like it has to fit a certain way. I’m actually under the gauge—the swatch should measure 4x4, but it doesn’t. It’s a bit short.

However, I knitted a few more swatches, because, why not? I used the same yarn, but in a different colorway, and what I noticed was what a difference blocking makes.

On the left: a blocked swatch. On the right: Non-blocked. I mean look at that! Amazing!

I also knitted up swatches in different needle sizes: 4 (the size suggested), 6, and 8. It’s sort of hard to tell here, but you might be able to see that on the 8, it’s almost twice the size of the 4, which makes sense, but it’s also sort of sloppy. I had a hard time maintaining tension with this yarn on size 8 needles. After blocking it did look less sloppy, but it’s still pretty unpretty, so I’m using it underneath a vase on my kitchen table. :)

This is all post blocking: The 8 is in the back, 6 in the middle, 4 in front.

I didn’t hit gauge with the 6 needles, either—this time it was too big. I’m still relatively new to knitting, so I’m not entirely sure what this means….maybe I should’ve tried the five size needles? :)

Anyway, lessons to take away here:

• Blocking is magic!

• Swatches did help me learn how yarn feels on the needles, and I got used to working with this particular yarn.

• It was also useful to see how it knits up on different size needles. Now I know, for example, that I’d never use this yarn on anything bigger than a 6. Maybe a seven. But on the 8s, it just did not work. A size six needle is OK, though.

• I’m pondering doing a swatch blanket or something like that—it’s actually really relaxing to sit and swatch in garter stitch! And I think it could be a good way to stash bust as well.

Any thoughts on swatches, gauge, or other knitty things? Let me know in the comments!