Seven Quick Takes--What a Week!

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Oh my goodness what a week around here!

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On Sunday I celebrated the birthday of my book! So that was a nice start to the week (or end of the week, depending on how you count the weeks!).

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Monday was…OK? I mean my body was still being sort of silly and my sleep was nuts, but it was all right.

Tuesday, however…..no bueno.

It began with finding an email saying that one of my favorite flower companies supports Planned Parenthood. This makes me sad and angry on several levels. One, that the lie that PP is for “women’s health” continues to have traction, whether or not people believe it or if they’re just parroting something that sounds good. Second, that people still think that being able to murder your babies is an OK thing. And third, that politics has to be in everything, even flowers!

Endo kept calling my parent about check in stuff and we couldn’t get ahold of them. (More on endo in a bit). THEN it was port access day, and my port decided not to work.

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“Work” in this case means—get blood return. Really quickly: When you access a port, you put in the port needle, with a syringe full of saline attached (used to flush the line) and if the needle in the port, when you pull back on the syringe, blood will come out.

No blood came out. We tried several times.

So, this means that either 1) there is some sort of issue in the line that needs professional help, or 2)the port is broken. The port is 16 years old, so that’s pretty likely. They don’t last forever, sadly.

So I had to email Kim, my transplant coordinator, and see what’s up.

And then both my hockey teams lost in OT.

Tuesday was not good.

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Wednesday.

Kim gets back to me and asks me if I want to see what happens with my port when I come in for blood work on 2/22. I say, yes, let’s do that. If the nurses can’t get it, then we will try a dye study to see if the port is really broken. And if it is, then surgery to remove the old one and put in a new one, which I hope fervently will be a POWER PORT! A power port means that I can get CT contrast through that line! Yayyyyyy!

So, OK, one issue dealt with. The port doesn’t hurt me, so the fact that it’s not currently working isn’t a huge deal.

I have an endocrinology appointment so my parents have to play phone tag with endo and I wail about how the fact that they won’t email me is just insane. Sigh.

So, the office is crazy, but my doctor is good, and I really like her. My appointment with her goes really well; my A1c has dropped two percentage points since last year, so that’s great. She’s “not worried about me” and is pleased with my progress. (I really like it when I don’t worry my doctors.) We make a few little insulin tweaks and set up some more appointments, including an education appointment. So I’m really glad that endo went well.

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And I was so glad that endo went well, and I was all dressed and pretty, so I went to the local yarn store! I had emailed them earlier in the week about stopping in for some help and the owners graciously said yes! (Knit ins aren’t happening right now, obviously, but this was OK.) So with the help of one of the wonderful owners, I finally have figured out how to pick up stitches for my cardigan collar! Huzzah! The end is near!

And then Ince I was there I had to get more yarn, right? So I did. Firstly because the woman had given me her time—she really had, she sat by me until I said I was comfortable doing it!—and also because…..YARN.

Behold the pretty—this is all Wonderland Yarn from Frabjous Fibers in the Mary Ann fingering base. Tonals: the bright turquoise, called Seaography; variegated: Biscotti, from the Tea Time Collection (the cream/gold/sienna speckle), and then the last two are from their De-Stitch Nation special collection: Jerusalem and Egypt.

Right now I’m thinking about doing a Free Your Fade shawl with Seaography, Egypt, and Jerusalem. Biscotti is a great neutral that will work with anything and makes me really happy.

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The other issue is vaccine roll out here. I am in group “1b” , but that’s been a group that’s been subject to a lot of political pandering. I might not get the vaccine until February 15 because, while I have lots of health issues that are in this group, I don’t have intellectual impairments. I’m not sure how that affects your immune system, but…..the state has decreed it so. Sigh.

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So yes it’s been a busy sort of insane week. But there are good things in it, as always. Like Patty!

She’s scooting now and it’s so cute—her mom video called me to show me. I just adore this child. And check that dimple!

As soon as I get vaccinated I am RUNNING to see her.

Happy Birthday, Living Memento Mori!

HAPPY BIRTHDAY, little book! :)

Living Memento Mori is officially one year old and I am so happy about that.
It’s sort of mind-boggling to think that she’s been out in the world for a whole year, that people have read her and left reviews and asked for signed copies…that people do seem to like it.

When I wrote LMM, all I wanted was to share my story and give people some hope. If I’ve done that, then I’ve succeeded.

So a big THANK YOU to everyone who has supported me and the book!

If you would like a copy, you can get one at your retailer of choice here. (scroll down a little bit to see the retailer links). If you would like a signed copy, email me.

It’s been….weird?….releasing a book during a pandemic. Fortunately I was able to attend the Columbus Catholic Women’s Conference to do a book signing, and there were some big conferences before the nationwide shutdowns started, so that helped sales. (I always hate to talk about money and sales, but it’s part of the book world, so here we are). The truth is that authors need to sell books if they want to keep writing, so your support is invaluable to me. Really, it is! Leaving reviews on Amazon is so important (as is adding the book to your shelves on Goodreads and reviewing it there).

I’d also like to know—what would you like me to write about? What are you interested in reading from me? Please let me know! Leave a comment or use the blog contact form to tell me. Your input really does matter—I want to write things that you want to read!

Thank you thank you thank you for your support of Living Memento Mori. It means so much to me, because with you, no book! Authors exist because people read them.

Here’s to year two!

Seven Quick Takes--Giveaway Winners!!!!

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It has been BUSY here this week! First there was the book giveaway—and the winners are….

Christy Thomas and Rachel Anna!

Congratulations!! I hope you love the book! I I have emailed you to get your information. :)

Thanks to EVERYONE who entered! If you’d like your own signed copy, email me—they are $20 and include a bookmark and prayer card! (And shipping!)

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I also wrote this: No, you cannot cure ALL THE THINGS with diet….

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Speaking of health stuff….this vaccine rollout has been sort of nuts.

First, the state decided that my group of people—people with “congenital” issues, which CF is, but it’s weird to call it that—can begin getting the vaccine on Monday. Ok. Fine.

I talked to my transplant clinic (OSUMC) and they said, well check with the Department of Health.

Oooookay.

So I register with my county’s health department. Fine.

Then I hear that OSUMC is doing a big vaccination clinic for their patients, even turning the basketball arena into a vaccine clinic. Yay!

Oh wait. I’m not eligible for that, because…….health departments are taking care of me? Huh? OSUMC is only doing their elderly patients? (Which makes zero sense given that I am a transplant patient and they see adult CF patients?!)

This makes no sense to me. OSU is doing elderly people, which, OK, obviously they need it. But health departments aren’t getting a ton of vaccines, especially in a county like mine which has a smaller population and is mostly rural. They’re getting a few hundred doses and they have thousands of people signed up.

So. I have no idea when I’m getting the vaccine or where, but I’m really annoyed that the place where I get my healthcare isn’t making an effort to put its patients in their clinic.

This sort of dovetails into something else I’ve been wanting to talk about….

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Adult hospitals really don’t care about making your life easier. They don’t. Children’s hospitals do.

The Resort had everything there. Radiology. Labs. Clinics. ER. Hospital. EVERYTHING. All under one roof. I drove, I parked once, I got everything done. It was easy.

At OSUMC, nope. I have to drive to one building to get my tests done before clinic. Because we can’t use the radiology department in the hospital. And there’s no pulmonary function testing lab at the hospital. REALLY? They do lung transplants. And there isn’t a PFT lab at the hospital itself?

So I have to go to this place, register twice, and then drive to the hospital itself for my appointment.

At the hospital, they do not take you early. They did at the Resort. At the Resort, my day started with an 8:0 lab draw in infusion. I was often out the door by 11 am. I’d seen everyone.

Here? NOPE. I’ve got labs at 9, then PFTs, then X-ray, then I have hours to wait before my 2:00 appt., because they won’t take me early. Seriously?

So I have to find ways to amuse myself between these two things, and I waste an entire day. This annoys the crap out of me.

Ad finally, the free parking is only good for a few hours. So there’s that.

Adult hospitals, quite frankly, suck at this stuff. They’re so awful. And if it wasn’t COVID-tide this would be somewhat better because I could go to cute cafes nearby, or go shopping or something. With COVID, this all becomes a massive pain in the butt because places are either closed to indoor seating, or I’m sitting around wearing a mask in all these places for hours, which is annoying.

ADULT HOSPITALS! DO BETTER.

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OK after that you deserve some Patty. Here you go

She just had her six month check-up and she has gotten taller and heavier so yayyy! And then she got her six month shots, poor bebe. :(

That’s one reason I want the vaccine NOW—I want to see Patty!!!!!!!!! I want to travel!

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This weeknight bolognese recipe is EPIC and you need to make it….I didn’t use ground sirloin, I used regular old ground beef. :) Also left out the cream. But SO GOOD.

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And finally, I read The Lost Man this week and really liked it. If you like mysteries, this is a really good one!

No, You Cannot Cure CF with "Diet"

(I’m doing a book giveaway this week! Enter here!)

I see a lot of crazy things on the Internet.

One of my favorites (sarcasm mode) is that you can “cure” every chronic disease with diet.

Um….

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No, you can’t.

No diet is going to make chromosome 7 magically work in me.

No diet will fix the fact that I have CFRD (CF Related Diabetes). It will not make my pancreas magically make insulin.

I am really, really tired of this crap. Stop it.

When I visited the CF dietician back in the day (I don’t need a specific CF dietician anymore) the rule was “eat as much of anything as you want” as long as it’s not diet, low-fat, or fat free. EAT EAT EAT. We were always trying to find ways to pour more calories into my body. Milkshakes. Ice cream. There was calorie powder!!! (I am not kidding.)

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That’s because when you have CF, your body burns an incredible amount of calories just trying to maintain your baseline. Coughing takes a lot of energy. EVERYTHING takes a lot of energy. Oh, and salt? You want a LOT OF THAT. Popcorn. Peanuts. Potato chips. Because your body loses a lot more salt that everyone else’s. So in the summer, I’m all about the sallllt.

When you see things that say “diabetes can be reversed with diet” they are (I hope) talking about type two, and yes, in type 2, what you eat does matter. It matter a lot. You can try to fix it with what you eat. But if you are a T1 person, you cannot. It’s not possible.

And also, if you have T1, you actually need sugar sometimes. There are times when I am commanded to eat candy and pizza and drink orange juice! (hopefully not at the same time!)

While I’m fixing health lies, let’s fix another one: You do not just “get a transplant.”

If you need one, you might not get one. If you smoke, you must stop smoking. You are tested for cigarette usage in your labs. If you drink and you need a liver transplant, you need to stop drinking.

Do some people do stupid things post-transplant? heck yes. And these are people who get kicked out of their center’s program and are not eligible for another transplant, should they need one.

But the vast majority of the time, centers are hard core about making this sort of behavior STOP before, because there are so many people that need transplants. If you’re not going to take care of the organ, then you’re most likely not going to get one!

And it’s hard work to qualify for a transplant. It’s days of tests and evaluations by multiple people on a multidisciplinary team. The idea of “just getting a transplant” is laughable to me.

2020 taught me a lot about how little the average American knows about hospitals, illness, and ICUs. (And germs.) But in 2021 I’m seeing a lot of misinformation about what a “good” diet can do for your body.

homemade bolognese. YUM.

Good food can help you in a lot of ways. So can exercise. But it does not cure everything and people who say it does are charlatans, up there with the “essential oils cure ebola” crowd.

So, now you know! Go and use your knowledge. :)

WIN a Signed Copy of Living Memento Mori!

In honor of Living Memento Mori turning one on the 24th, I’m doing a giveaway!

I’m giving away two signed copies of my book, which includes a prayer card and bookmark specially designed for the book. So there are two winners!

I will inscribe the book to you, a friend, a relative—whoever. So if you already have a copy and you win, you can give this one to someone you love! It makes perfect reading for Lent! (Really, anytime, but especially Lent!)

So, here you go! Winner will be announced in a blog post, so keep your eyes peeled!

GOOD LUCK!

Seven Quick Takes--January 15, 2021

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Hello, all! Welcome to the Friday Quick Takes. :) Glad you’re here.

We’ll start with some Patty, per usual….

No, I did not make that really cute sweater, her grandma (my Aunt Sue) did. :) She’s almost 7 months old!

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We could talk about politics. But the thing is, I’d rather not, because I spent so much of my life in it. And at this point I am glad I am out of it. I will, however, repost something I wrote over the summer about how we deal with current events. Here you go.

I really do think that we have to think about what we say, pray about what we say, pray about what God is calling us to do. Not all of us are called to be big shaking world changers. Food for thought.

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Sort of attached….I know a lot of people are talking about leaving social media. I can understand that. If you want to stay in touch with me and the blog—which means you get all the posts, the giveaways (one next week!), notifications, and news—please sign up for my mailing list. I do not send spam. :) You get blog posts and my newsletter sent to your inbox, and you also get subscriber goodies!
And also, publishers look at the “engagement” authors have with their audience. So a healthy email list is something I can show publishing houses to say that people actually, you know, read what I write?

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My Book’s Birthday is on Jan. 24, and I’ve got giveaways! On Monday the first one will go, and then I’ll be doing another which is more Lent focused in February. I’m excited.

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In other news, I’m really happy because one, hockey is back (even if the Pens did lose to Philly last night) and two because I’m sleeping again, yay body! It’s so nice to have energy!

In other health news, my “group” of people here in Ohio is set to begin receiving the COVID vaccine on January 25. I’m registered with my local health department and OSU (Ohio State) is also setting up a site for their patients, so I’m not sure where I’ll get it or which one it will be . I guess it’ll be whoever calls me first. I you are in Ohio and want more information on the vaccination process, you can read it here.

What I’m hearing is that we (meaning immunocompromised folk) might not get as much protection as the rest of you from it, because we’ve broken our immune systems on purpose. But even some protection is better than none.

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Some books I’ve read lately and really liked: Miss Austen, Piranesi, and The Exiles. If you want some good fiction reading, I highly recommend these!

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My tree is still up, yup. I try to keep it up until Candlemas, which used to be the end of the Christmas Season. We’ll see how long it stay up. :) But some of the other things can start to come down. I don’t have too many Christmas decorations but some things like the pillows can move back into storage until next year.

How about you? Is your tree or nativity still up, or have then been packed up?

Seven Quick Takes--A Word for 2021

Hi everyone! This is going to be a sort of different 7QT today, but I will start off with a link to the first yarn along of the year, in case you missed it. :)

So today I’m writing about my word of the year for 2021. When I’m doing Power Sheets prep in November and December, this comes up—what do I want my word to be for 2021? Last year it was “discipline”—trying to create rhythm of life in my work and in housekeeping and things like that. Well, rhythm sort of went out the window in 2020, didn’t it? :)

In 2021, my word is LISTEN. Listen to God, listen to my body, and listen to my gut.

Listen to God is sort of easy, right? I want to listen to what He wants from me, so that means I have to make time to be quiet in prayer and give time to Him in deepening our relationship.

Listening to my body is harder. As I write this (Thursday), I don’t really have any energy. I didn’t sleep for most of the month of December. What I mean by that is that I’d fall asleep around 3 AM after taking something to help me fall asleep, because I’d be trying to fall asleep for the past three hours, and the I’d force myself up seven hours later. I need nine hours of sleep a night. I was getting less than that, on a regular basis and the sleep I was getting was crappy, really hard sleep ( you know what I mean?). At 5 AM on Christmas morning my phone alerted me to a low glucose reading so I went down to my parents’ kitchen to give myself some orange juice, and then I realized that part of the sleep problem was probably that I was giving myself too much insulin. I was giving myself insulin around 8/9 :00 with my evening meds (because I eat with them) and then more when I went to bed. I didn’t need that much, and I’d been seeing low morning glucose numbers for awhile—not really low, but low-ish. I thought that was OK. But then I’d looked back over the night and seen that I was dipping to the low “danger range” more often than I’d like.

So for the past two weeks I’ve tried not having the snack insulin dose (which was something I had suggested to my team, not the other way around so I didn’t feel bad skipping it.) For the first few nights I slept hard and had really vivid dreams. I’ve been sleeping better, but I’ve also been low in energy meaning that I think my insulin is off—again—because I’m running high at night now. So today I finally sent an email to my nurse asking if she had any suggestions.

I clearly need to listen to my body. It’s tired. It doesn’t have a lot of reserves. It needs to sleep, to sit, to recuperate and recover from whatever. (No, I do not have COVID. :) ) And I’m trying not to listen to it because I have stuff that needs to be done that’s bugging me, like laundry and dishes and putting sodas in the fridge (Diet only. :) ). I’m falling asleep earlier, but I’m still sleeping 12 hours a night and I hate that—even though I know my body needs it.

So listening to my body? Yeah. I need to get better at it, especially when it’s yelling at me like it is right now. I need to stop thinking I need to get everything done and realize that my body does not, at this moment, have the capacity to do things like HIIT workouts or even a lot of puttery housework. It needs water, naps, and recovery, and easy workouts like stretching and slow, yin yoga. Nothing hard or intense.

Listening to my gut means that I stop doing things that I don’t really want to do or think I’m not suited for because I want to be “nice.” I want to not let someone down, I want to be a team player, I want to be reliable. My body, first off, doesn’t always let me do that (see above!). And second, if I’m forcing myself to do something, am I doing my best work? I don’t mean skipping out on things that I have to do based on previous commitments. I mean taking on new things new work, new commitments. Do I really want to? Am I excited about it? Do I have the margin to do it?

Right now, my body is saying, “Emily, you have no margin. You need to take care of ME.” And if my body isn’t happy then I can’t do anything anyway, because it won’t let me!

So, as frustrated as I am right now, I know that listening to my body will pay off. I just have to do it. I have to listen to God and see what He wants from me. And I have to listen to my gut, to see what I’m feeling about projects.

That’s my word for 2021. What’s yours? Do you pick a word of the year?

(Oh, and also: cute Patty for you:

The First Yarn Along of 2021!

Welcome to a new year of YARN ALONGS!

So, what have I been working on?

Two things, mostly: a blanket for Patty, and the cardigan. :)

First, the blanket

I did make Patty a blanket over the summer, but it was with a cotton yarn that I really didn’t like. It was hard to work with and so I made mistakes. After finishing the blanket I realized I didn’t want to give Patty a blanket full of mistakes. So the blanket is still here but I knew I was going to knit Patty another one.

This blanket is done in super wash wool and it’s much better. No arguing with the yarn!

( If you’re wondering about this: yarn from animal sources—wool, yak, whatever—has “give”. You can tug on it, manipulate it, it’ll work with you. Plant fibers—cotton, linen, etc.—do not. You are tugging them. At least this is my experience. I do not like working with pure linen and pure cotton. Blends are OK.)

So this blanket is done in Ewe Ewe Yarns Ewe So Sporty. I’m using Berry (the pink), Iris Blossom (the dark purple), lavender (light purple), and vanilla (white/cream). It’s the same Sully blanket pattern that I love.

The book I’m reading, Miss Austen, is one of my Christmas books. :)

In the #emilyknitsacardigan realm, picking up the collar has been….challenging, to say the least. I did OK when I practiced on the swatch but when I went to pick up the stitches on the actual cardigan, they didn’t seem to want to come! So if anyone has tips on picking up stitches I’d love to hear them!

Each day fresh, with no mistakes in it

“Tomorrow is always fresh, with no mistakes in it,” as Miss Stacy once told Anne Shirley. And after the year that was 2020, I think we need to remember that tomorrow is always fresh! We can always start again.

Looking back on 2020, there were two great things: my book, and Patty. Those are things I am glad to keep, and things I celebrate. 2020, no matter what else happened, will always be a good year because of those two things, and the things that came from them.

Patty on Christmas, with the teething toys she got.

Stacks of my book in my office.

I’ll never wish those things back.

In my family, it’s generally a good day if, at the end of it, no one ended up in the ER. And I wonder if that’s a mindset we need to take with us into 2021? The idea that our days will not be perfect all the time, which is why we need to remember what Miss Stacy told Anne—every day is a fresh chance to get it right. And maybe we need to adjust the bar for what’s considered a “good” day? If at the end of the day, everyone is home, everyone is safe, and everyone is fed, then can we call that a good day? Or at least a day that we got through and we can try again tomorrow?

I wrote this on Instagram, and I share it here because it’s true: “Most of all, I’d keep what I know to be true: that a great, good God is running this show, and while I don’t always understand what’s going on, He does. And He has plans for our salvation, happiness, and joy.”

We don’t always see the plan. I like to know the plan. I’m BIG on that. But as I’ve gotten older, I’ve also realized that I’m never going to know all of it. I’m just not! I have to give these things to God. That doesn’t mean I don’t try to do my best. But as John Paul XXIII (I think?) said, “It’s your Church, Lord. I’m going to bed.”

Sometimes, the best thing we can do is turn it all over to God and go to bed.

As we head into this new year, we don’t know what will happen. But if we try, every day, to live it with God ad with intention, I think we’ll have lots of good days, good weeks, and good years.