Emily M. DeArdo

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knitting,CF

A really big yarn along!

yarn along, Scotland, knittingEmily DeArdoComment

Hanks of yarn at Ginger Twist Studios in Edinburgh

So I owe you a HUGE yarn along, featuring Edinburgh yarn! So let’s get cracking.

The first thing I’m making is a Saturday Shrug:

There are a TON of ways to make this. In the shop, the lace weight yarn (the yarn at the bottom in the above photo) was used to make thin stripes:

I decided to do it with both yarns held together:

isn’t it pretty?

This is pure comfort knitting. If you want to use these yarns (which I recommend!), they are Ginger’s Cumulus Humilis Aran and Leading Lady Lace. Jess, the lovely shop owner, ships to the USA!

The other yarns I got from her shop are:

Masham Mayhem in Lallybroch, Hocus Pocus, and Au Naturel, which will be used to make a Drachenfels shawl.

I HAD TO (yes, had to) grab two skeins of the yarn on the left (above)—that color! And the name—Voyager is the title of the third Outlander novel. This is Yakety-Yak 4 ply, which is merino, yak, and silk. It’s so squishy! I haven’t decided on a project for this yet….any suggestions?

Another thing I did was purchase one of the mystery bags they sell. Once I was home, I knew I wanted more yarn (space constraints limited me!), so thought this was a great way to get a mix of gorgeous yarns. Jess will send you yarns based on one word you give her, and she’ll also send patterns! I mean how fun is that?

I got:

Victoria DK in Breakfast with Ginger (below) and the pattern BRU by Amanda B. Collins

Halo Honey Aran (currently unavailable!) in Ginger, a lovely warm ginger (obviously) red color, with the pattern Little Squirrel Socks by Tin Can Knits. This has inspired me to conquer socks! Halo Honey is 100% British Wensleydale Wool and I have no doubt it will make wonderfully cozy socks. (Or I could use it for something else but I REALLY want to try a pair of baby socks with it, especially since I have many babies and toddlers in my life!)

Finally I received the Hipster Hat pattern by Alexa Ludeman, the co-founder of Tin Can Kits. This also comes in a variety of sizes, so….baby hats! :-D And the yarn, St. Magnus DK in Gold, will definitely make for a happy hat!

So that is the Great Scotland Yarn Round Up! I am really exited to use all of these beautiful yarns!

One Year of Peloton

transplant, health, CFEmily DeArdoComment

You might remember that are my yearly appointment in 2022, my team told me that I had to—definitely—start an exercise program.

Up until that point, I’d never really had one. I’d done some things sporadically, I’d done a 5K the year after my transplant, and I’d gone to barre, ballet, and yoga classes on and off. But I’d never really had a set program that I did consistently.

Now it was time to get one.

Today I’m going to walk you through my program, do some before and afters, and talk about general fitness-y things.

The first thing I did was sign up for the Peloton app. Two things, right off the bat:

  • This post is in no way sponsored by Peloton. It’s what works for me so I’m talking about it, but I don’t get paid to say any of this.

  • I do not have any of the Peloton equipment (the bike, the tread, the row). I use the app exclusively, and use the treadmill in my complex gym for my walks.

The “super goal” as it’s called in the goal setting world, is to be working out every day for 30 minutes, with one rest day (Sunday) per week.

I was starting at zero, so this goal is still in progress. I am working out almost every day, but not for 30 minutes, generally.

As I’ve talked about before, my body is weird. I have about 54% lung function, which is good for me, but it’s half of a normal person’s. I have a wonky right knee and right Achilles’ tendon, as well as tight hamstrings. I say this to lay out what I am dealing with and how my routine has helped me here.

So, all that aside, here’s how it goes:

I break my workouts down into several areas: cardio (swimming, yoga, walks), strength, stretching and mobility, and I use the peloton meditation classes. (I don’t meditate, per se. I use these to help with stress and relaxation before bed, because keeping stress low/manageable is a big part of keeping blood glucose levels in check.)

For cardio: I do the treadmill walks on the app—usually 20 minutes, but sometimes 15 if my day is packed and I need to get a workout in. I have done one 30 minute session so far.

When I first started—being totally honest here—I could barely hit 1.0 on the treadmill. Now I’m at 2. (On my treadmill. The app says I’m going about 2.5 on my speed, but speed varies on treadmills).

When I first started, I couldn’t follow any instructor cues (to go faster or to increase incline). Now, I do follow them (within reason—I’m not ready for 6 or 8% incline—yet), and I like them. The app also offers hikes, which I’m going to try for the first time this week! The highest incline I’ve hit so far is 4%.

I also swim in the complex pool, which is a little harder to do regularly, because I have to have room to swim, and in a shared pool, that can be hard to do. I don’t swim fast enough to feel comfortable at a Y or JCC pool doing laps. As you can see above I’ve started tracking my swims with my Apple Watch. I’m hoping the pool will be open for a few more weeks so I can get in more sessions, because swimming really is my favorite cardio. (It’s generally open May-September.)

I count yoga as cardio; I know some people don’t, but when you have the lung function I have, even slow flow classes count for getting the heart rate up. I’m trying to be more consistent here after doing a week long yoga program on the app earlier this summer. There are a wide variety of classes. I almost always do a restorative yoga class once a week because these are great for opening up my chest (very important in the pulmonary world), releasing tight areas, and also reducing stress. (There is actual science that backs up how yoga can help lots of health conditions, CF being one of them; check out the book Yoga as Medicine* for more on this.) Obviously restorative yoga is not cardio, but my body really likes it.

A look at the yoga classes I’ve taken.

For strength, I do the 10 minute arms and light weights on the app. For these you use 1-3 pound weights, with the objective being lower weights but higher reps. I’m currently using the 2 pound weights and I might be ready for the threes, so that’s a huge improvement from the no weights I used when I first started. I love these classes. I’ve dropped a shirt size since I’ve started doing these.

For leg and core exercises (which are also works in all the other things I do) I do things like wall sits, plies, pelvic tilts, etc.

Stretching and mobility is also really important to me. I always do a lower body stretch after a treadmill session and I stretch out my arms after weights. Sometimes I do a really focused 10 or 20 minute stretch like you see above with the “hip mobility”. My legs get very cranky if they do not get stretched out regularly.

Here’s what this looks like in a normal week:

Monday: Restorative Yoga

Tuesday: 10 minute arms and light weights

Wednesday: Treadmill session with stretch after

Thursday: 10 minute arms and light weights

Friday: Treadmill session, restorative yoga.

Saturday: 10 minute arms and light weights.

Stretching and swims are added in as possible.

I want to add in more dedicated yoga classes, possibly on T or Th, and I also want to experiment with some other strength classes on the app.

I am much stronger and fitter than I was a year ago, an I can’t wait to see what gains I can accomplish in the next year!

Yarn Along: The Summer of I-Cord

yarn along, knittingEmily DeArdoComment

This summer I have been diving into the fabulous world of knitting I-cords.

What is an I-cord, you may ask? It’s the border and loop you see in the mini washcloths above (knit during Modern Daily Knitting Summer Camp, which was all about dishcloths that use I-cords!). They are delightful and pretty and sometimes functional, as we see here!

The I-Cord obsession began with the Sophie Scarf and Sophie Shawl—if you knit, you need to knit these patterns because they are truly delightful and adaptable. These projects use applied I-cord for the pretty edging. All this means is that you slip two stitches with the yarn in front at the end of every row, and voila! I-Cord!

The large Sophie shawl n Quince and Co. Phoebe—colorway Orion.

I’ve made three Sophie scarves (one as a gift, two for me), and one shawl. They make fabulous gifts!

Using La Bien Aimee’s merino boucle


I-Cord is also used in Andrea Mowry’s Everyday Cowl—both for edging and bind-off. I-cord bind off is sort of the equivalent of one step forward, two steps back, but it does look nice and tidy.

Close up of the I-cord bind off.

Then I decided to get really crazy, and learn how to do two color I-cord bind off for Andrea Mowry’s The Shift cowl!

This wasn’t in my plans. I’ve been trying to work down my Ravelry queue of patterns and use up stash, which is what happened with both the Sophie Scarf above and the Everyday Cowl. But when I saw that Andrea had designed this pattern for the Edinburgh yarn festival, and since I’m going to Edinburgh in September, and all the colors she used were named after places in Edinburgh, I not only had to make this, but I had to use the original colors. (They’re the bottom three colors here.)

From the bottom: The Meadows, Leith, and The Castle.

I also learned mosaic knitting with this project (Mosaic knitting is basically slipping stitches in various patterns.)

While on the needles. Check those gorgeous colors!

This is about to go in the bath and be blocked, then seamed, to create the finished object. Keep your eyes peeled for an update!

And then finally, I learned to knit a single I-cord during the Modern Daily Knitting (MDK) Summer Camp held last Friday. This was pretty amazing; if you’ve never taken a class with them, I highly recommend it! Lorilee Beltman taught us all sorts of tricks using her Sinkmates Suite dishcloths, which use I-cord and various stitch techniques to create beautiful dishcloths. I generally hate working with cotton yarn, but the Rowan Handknit Cotton we used for this class is great!

I’m addicted, I’m just going to admit it. So far I’ve knit one basic, one striped, and I’m about to start a mosaic one. The other great thing about these patterns is that they help me master a technique that’s stifled me—picking up stitches from a cast-off edge. I’m really bad at this! But I get lots of practice while I knit these dishcloths, and this will definitely come in handy for future projects, especially cardigans that have a shawl collar!

In the non I-cor world, I’m also working on a blanket for a friend’s little boy, and there’s another MDK online class coming up in August where I’ll be knitting a cowl that looks scrumptious.

Have you ever fallen in love with a certain type of technique, recipe, or music, and then just couldn’t stop doing it? :) Tell me about it!








Eighteen

CF, essays, family, journal, transplantEmily DeArdoComment

This is a photo of me and my godson, Ryan. (He’s also my cousin.)

I was fifteen when he was born. When I received my transplant, he was seven years old.

I loved him insanely. I kept his photos in my locker, and my friend Amilia remembers that we used to call him “baby.” (I still love him insanely, don’t get me wrong. The insanity of love does’t wane.)

He’s 25 now. He works in Pittsburgh and has a degree in economics. He’s learning Japanese.

When I was on the list, when I thought I might not get to see him grow up, one of the things I wrote during that time was a letter to him—things I wanted him to know.

Fortunately he never received that letter, because I did get to see him grow up. I saw him lose teeth, make his first communion, heard his voice break and his body shoot up in height, and I went to his high school graduation party and I know him as an adult.

Patty is three years old. When I had my transplant, her mother (my cousin) wasn’t even married. Neither were my siblings.

My nieces—sweet Madeleine and Hailey—weren’t even possibilities at that point.

Melanie and Madeleine (aka, Maddie, Baby Bear, Sweetheart, Baby Maddie….)

Bryan and Hailey (aka, Hails, Hailey Bug, Baby Bear, Munchkin, Baby Girl…)

Cheering on her favorite baseball player with Mommy!

There are so many gifts. So many things I didn’t even think of when I was twenty-three.

So many things I would have missed.

For some reason, I didn’t miss them. I got to experience them.

“I am, among all men, most richly blessed.”


Please consider becoming an organ donor, so that more families like mine can be blessed.

Also, my annual signed book sale is on! Get a signed copy of my book, a specially designed bookmark and prayer card, and free shipping, for $15! Email me with your address.













I'm In Public Discourse! (And a sale!)

essays, CF, organ donation, writingEmily DeArdo1 Comment

I’m very excited to share that an essay of mine has been published in Public Discourse!

This is my first journal piece, and I’m very excited about it. In it I talk about how transplants work, the gift of more time, and (yes, of course) memento mori!

Let me know what you think!

And speaking of the book…

The Ave Maria Press Memorial Day sale is here! Through Monday, use the code REMEMBER23 for 25% off and free shipping. This is a great time to pick up a copy of Living Memento Mori (or get gifts for people!)

I hope you have a great Memorial Day weekend!

Putterings

journal, writing, travel, knitting, ScotlandEmily DeArdoComment

My garden grows!

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

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

It’s little but it’s there!


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

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

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

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

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

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

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

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

Phoebe in Orion

How’s your May going?





Transplant 101: How Transplants Work

transplant, CFEmily DeArdoComment

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

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

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

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

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

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

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

I’m on three types of medications, broadly:

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

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

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

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

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

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

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

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

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

But these are the choices we make to stay alive.

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

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

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

Blogmas '22 Day 7: Christmas Knits

blogmas, family, holidays, knittingEmily DeArdoComment

There were three things knit for gifts this year and now I can talk about them since they don’t have to be surprises anymore!

One of them I think I’d already shared—Hailey’s baby blanket.

Wrapped up in it :)

This is an adaptation of the Sully blanket pattern I’ve used for all the baby blankets I make, but every time I keep adapting is! This time I added a border of garter stitch all the way around—I start with four rows of garter stitch and then end with four rows of garter stitch, in addition to the four garter stitches at the end of each row. I don’t like to block blankets so I think that this makes the blanket “lie” a little bit better.

I used Rowan’s cashsoft merino in three colors: snowflake, vintage pink, and rosy.

Project Number 2: A winter scarf!

This was actually planned as a Christmas gift—I made my dad a scarf in easy mistake rib, using a nice navy blue yarn—and he got it before Christmas due to the insanely cold temperatures we had here! I’m glad I’d thought to make it!

(I don’t have any pictures, sorry, bad blogger me!)

Project Number 3: A Cowl for my Sister-in-law

This was sort of a random project. I had some of Quince and Co’s limited edition yarn based on a Taylor Swift song—Lavender Haze. I bought a few skeins thinking it would make some good cowls.

Once Hailey was born, I felt like I needed to make another Christmas gift for Sarah (my SIL) since one of her gifts was Hailey’s baby blanket—but since Hailey was here, it was hers now! Knowing that she loves sparkle, I thought I’d pair Lavender Haze with a sparkly Knit Collage yarn to make a really quick cowl that will keep her warm on walks with Hailey this winter!

The colors here aren’t really representative—it’s much more pink in person, not orange!

The pattern is Knit Collage’s Yarnicorn Cowl knit with Quince and Co Puffin and Knit Collage’s Star Spun in Lunar Landing. You need one skein of each and it seriously takes about two hours to knit up! Knit Collage’s yarns create really fun, unique knits. I’m going to make another one of these for my sister, except using the Knit Collage Kona Sky color way with the Lavender Haze.

Did you knit/crochet/craft any Christmas gifts? Tell me about them!

Medicine, Accommodation, and Rudeness

CF, health, hearing lossEmily DeArdoComment

“October Day”, Jean Charles Cazin, oil on canvas

This is sort of a hodgepodge of medical things that have been bouncing around in my brain, that I wanted to share with you. But it seems connected to me, somehow.

Thought 1: Needing Medication Isn’t A Bad Thing

Not everything, alas, can be fixed by diet, by getting more sleep, or by exercising, or praying more. Sometimes people need actual medical treatment, and that can include medication. This is not a failure, and this doesn’t make you a bad person. I feel like we especially feel like taking medication for a mental health condition is somehow shameful. It is not.

Connected to that is that medications have side effects. A lot of people treat this as a reason to avoid medications at all costs. However, that’s not feasible. At some point in your life, you’re going to need medication, whether it’s Tylenol for your headache or chemo for cancer.

Side effects are to be weighed by the overall good of the medication. For example: Prednisone has a ton of side effects. But it also keeps me alive. So, me staying alive outweighs the fact that it messes with my body’s ability to process glucose, that it causes weight gain, and etc. (However it also keeps my voice in great shape and my joints happy, so I feel like I’m winning here!)

Insulin can also cause side effects but without it, I will be in bad shape.

Everything has potential side effects, from water to the latest wonder drug.

Now sometimes, side effects make it not worth it to continue a medication. For instance, my body cannot tolerate statins, and when I took them, they didn’t impact my cholesterol anyway. So it wasn’t worth me taking the meds and dealing with the side effects for something that wasn’t doing its job!

So if you need medication, that’s OK. Be sure to talk to your doctor about the side effects, if you experience any, and if that makes taking the medicine intolerable.

But to say that medication shouldn’t be taken because it has side effects is…. silly. They’re something to consider obviously. But it’s not a blanket statement you can make.

You have to educate yourself and weigh the pros and cons.

Two: The Question of Accommodation

Recently there’s been a lot of talk about this due to the Fetterman interview (if you’re not familiar with it—Pennsylvania senate candidate John Fetterman (D) had a stroke earlier this year. In an interview with NBC news, he required captioning software so that he could understand the questions the journalist was asking, due to a sensory processing problem due to the stroke.) As such, there’s been a lot of commentary in the social media world about whether or not the reporter would’ve commented on his abilities (or disabilities) if, say, he’d been wearing glasses or been in a wheelchair—or if he was deaf.

Now, I have a little experience in this area. So I have thoughts—obviously.

First off, the only accommodation that most people seem to have no issue with is a person wearing glasses or contacts. It’s so common that everyone just accepts it as a thing and no one says anything. (However, that’s not true when it comes to things like large-print books, menus, signs, etc.)

This isn’t true for anything else. Hearing aids are often rejected because people don’t want to look “old” or like they’re impaired in any way. Only about one-third of people with hearing loss wear hearing aids. Insurance doesn’t cover hearing aids like it covers glasses, soething that I think is ridiculous (and is somewhat ameliorated by the fact that now you can get them over the counter). But hearing loss is also connected to dementia and Parkinson’s disease if it’s not corrected. There are lots of reasons to wear a hearing aid—but a lot of people don’t.

During COVID, a lot of us hearing impaired people were totally lost when communicating, because of masks. I still can’t go to a medical appointment and not wear a mask, which means I am often lost when it comes to what my doctor is saying! But there isn’t any accommodation. This extends to things like movies and TV, where not everything is captioned (or captioned correctly), to getting pushback when I make the argument for microphones and telecoil systems in church because it’s not…aesthetically pleasing.

Many public places aren’t accessible to a wheelchair uses, or someone who is on crutches or uses a walker or canes, because there’s no switch plate on the doors.

Accommodation is limited. How often do you see a braille menu, for example? How many places don’t have a telecoil system to allow hearing aid and cochlear implant users to understand things better?

But when these are asked for, they’re brushed off as “too expensive” or “impractical”.

So, the fact that Fetterman used captions for his interview isn’t really an issue. When I’ve done radio interviews I ask for the questions ahead of time so I can get an idea of what I’ll be asked. Most places will send me a list of questions that will be asked—sometimes more than we actually answer in the interview!

The issue here, in my opinion, is the difference between a physical disability and a cognitive disability. Wearing contacts and a cochlear implant don’t impede my cognitive functioning. My brain is just fine. Surely no one would say that Stephen Hawking was cognitively impaired! But there is a difference, and most people don’t get that (the same as not understanding that there are people in ICUs every day of the year).

The idea that people don’t make assumptions about people with disabilities isn’t true. I’ve had people talk to my parents instead of me when I’m in the room. When I had my new port put in, one of the nurses asked Dad something about me—I was “her” in this discussion—when she could have asked me, and if I didn’t understand her, Dad would’ve told me what she said. People talk around you but not to you. It happens all the time, to just about everyone who has something “wrong” with them that doesn’t involve wearing glasses.

Is Fetterman capable to serve in the Senate? I don’t know. That’s for the voters of Pennsylvania to decide. The answer might be clearer if updated, detailed medical records or statements were released. I do hope, however, that we can have some real conversations about disability, different kinds of disability, and accommodation, because we don’t have them as a society, and we need to.

But we also need to understand, as disabled people, that there are things we can’t do. I, for example, couldn’t do a job that included phone work. I’d be lost! I will never be able to climb Mt. Everest! That’s not “dissing” myself. It’s stating things that are true.

The discussion around disability is complex and fraught, but we need to have it.

Three: RUDENESS!

People, never comment on what someone is eating, OK?

There is a common misconception about diabetics that we can’t ever eat carbohydrates or sugar.

That is totally wrong. We can, nay, we must, at certain points, have carbs! If I didn’t give my body carbohydrates on a daily basis, it would get very angry with me. There are times when I must have them or I will faint, or go into a coma! Or DIE. (NOT KIDDING)

So there are times when we must have carbohydrates, be that juice, or candy, or cake, or pizza.

We can also have them just as a matter of course—we have to dose for it with insulin, like we do everything else. I eat ice cream and cake and cookies. I’m allowed to have them (like everyone else, in moderation!).

Sometimes my body decides we must have sugar right now, and that’s in church. It’s not great, but it happens. It does not break the Eucharistic fast. It isn’t disrespectful to the Lord. I have sugar packets, Skittles, and Sour Patch Kids in my purse for these occasions, as well as hard candies.

So if you see someone that you know is diabetic eating candy, or drinking juice, or having a brownie, don’t assume that she can’t have it, because she can.

Sometimes I have had to ask people to get me juice if I’m having a low and I’m still dropping, because I don’t trust my hands to not spill it. In that case, people get it for me, I drink the juice, and life continues.

But please don’t ask us if “we can have” a cookie or candy. We can. And we might need to have it immediately!

Thus endeth the medical lesson!

New port is in!

CF, healthEmily DeArdoComment

Hospital lobby at 6:45 AM :)

The port is dead, long live the port!

So last Thursday I had my old port—17 years, RIP!—taken out, and a new POWER PORT put in! (Power ports enable me to get things like contrast for CT scans through my port instead of trying to find a vein for that. They’re GOOD!)

This was a sort of complicated thing, because it involved both sides of my chest. I wasn’t sure where they’d put the new port, and the doctors decided to put it on my right side. So they had to take out the old port—which was buried pretty well, because I weighed ninety pounds when it was put in!—and then put in the new port on the right side, which apparently is the “preferred side” for port placement. Whatever!

This wasn’t done in an OR or under general anesthesia, like my first one was. This was “twilight sedation”, which is what I get for my bronchoscopies—you’re sedated, but you can still talk and respond to commands. I don’t remember anything from the actual procedure. They apparently had to give me more sedation than they thought, probably for two reasons: one, they had to go int through my neck to place the new port and I HATE having my neck messed with, and two, my face was covered by the surgical drape, and I don’t like that either. I was sort of freaking out about that when I fell asleep, so I’ not surprised my subconscious was still freaking out.

(It’s weird. I don’t mind masks and things on my face—like aerosol or oxygen masks. But if I’m flat on my back I hate it. I don’t know why. It’s a thing!)

Anyway, we were home by lunch time. The dressings are off, and now I have steri-strips, instead of stitches, that are still healing. This limits my ability to turn my head and how I move my upper body, which is a bit annoying, and of course impairs driving (can’t turn my head all the way to see things).

I’m not in a lot of pain which is nice. Sleeping is still sort of hard. But fortunately this week is entirely clear so I can just hang out at home and work on knitted Christmas gifts and read while things heal up.

So, I’m doing fine, glad to have my new port!

Therapy

CF, healthEmily DeArdoComment

(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

Daybook, family, health, books, food, knitting, links, transplantEmily DeArdoComment

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!

Everybody Hurts

CF, essays, transplantEmily DeArdoComment

(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!

books, yarn along, knittingEmily DeArdoComment

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*.


End of July Daybook

Daybook, current projects, family, books, health, knitting, Take Up and Read, foodEmily DeArdoComment

It has been so long since I’ve done one of these, but I saw that Elizabeth Foss has re-started them over at her blog and that gave me the impetus to go ahead and write this one! Because I like them and it’s been way too long since we’ve had one!

Outside my window::

It’s a sunny day, the grass and trees are green and thriving (see above photo!). It’s only going to be 81 today so that mens I can sit on my porch and read without frying to a crisp. This is excellent.

I am listening to::

In the car, it’s the Six * soundtrack. It’s so fun. I’ve also been working on learning Scottish Gaelic, so sometimes I tune into the BBC Scotland (Alba) channel and get a mix of Scottish music and talk radio—sometimes in English, sometimes in Gaelic. I’m really good at picking out the word “and”! (which is agus).

I am wearing::

You know, when the world shut down in 2020, it was so easy to get into the “I am not going to get dressed” thing, right? I’ve never been a person to leave the house in my pajamas, and I’m still not. But yes, my favorite leggings and a great t-shirt are sort of my summer uniform, along with a fun lipstick. (One of my New Year’s Resolutions? Wear more lipstick. It sounds really funny and sort of silly, but I love doing it now!) Generally my hair is up. When I’m dressed like this I feel like I can get a lot of things done, which is always a good idea!

Grateful for::

Talking to Maddie and my sister this morning—Maddie is blowing raspberries and it’s so cute.

Good weather

The local farmers’ market, which I remembered to visit yesterday!

A new baby to knit for

a local yarn crawl to attend!

Pondering::

Two big projects—but not writing projects. One of them is a wholesale overhaul of my apartment. The other is about gaining back muscle strength and endurance post COVID lockdowns.

The apartment is something I’ve been wanting to do for awhile, and this has two parts: the really deep clean + organizing, and then the decorating part. The two are sort of dovetailing because as I deep clean/sort/donate/organize things I notice things that need replaced or things I need to get to ensure things are running smoothly around here. The other part is replacing broken things with things that I, in some cases like better, like the lamp below:

This lamp is perfect!

The goal is to have the cleaning and organizing done by Labor Day. I think I can do it! The decorating will take a bit longer as I look for things that are good fits, like the lamp above. There was a lamp there that didn’t really fit the space or my style, but I kept it because I hadn’t found anything else I really liked. As soon as I saw this lamp (from Target) I knew it would be perfect, and it is. So then I was able to get rid of the old, broken lamp!

Another part of housekeeping is having the energy/stamina to do it, because I don’t always. If I get sick, the entire system collapses, so I need a better system, for starters, but that also feeds into the second project—getting my stamina back. Lockdowns did a huge number on my overall fitness, and so I’ve decided that I’m really going to re-focus on that. I’m doing Take Up and Read’s Well and Good summer program, and that’s been really helpful in addressing certain issues I’d been having. I’m not trying to lose weight—at this point, I want to be strong and be able to function on a daily basis, for myself, but also for Patty, Madeleine, and my new niece!

So I’ve been working out three times a week—the goal is to build that up to 5 days. The workouts vary but I can already seem changes in my stamina and strength, which is all for the good. And if I have more strength, I can do more around the house as well! It all works together.

Reading::

The King’s Pearl*, about Henry VIII and his daughter Mary; Mansfield Park*'; Taste: My Life Through Food*, and Theology of Home III: At The Sea. *

Creating::

a shawl—I’m in a yarn club so every quarter members get a special kit with an exclusive pattern, yarn for the pattern, and a knitting notion. I’ve been knitting through kits I have, and this is the one I’m on now—hopefully I’ll have it off the needles by August’s Yarn Along! I’ll have full notes there too.

To Live the Liturgy::

Today’s the feast of St. Martha!

Around the House::

See above! :) But right now the laundry is going as I write this.

From the Kitchen::

When I visited Diane, she taught me how to make sourdough bread and gave me some of her starter. I am most likely going to bake my first loaf with it within the next week. Fingers crossed!

Patty observes the process!

Plans for the week::

As we head into August my schedule is lovely and clear. August has two medical days—an Echo as part of my yearly transplant testing, as well as the whole day testing/doctor visit extravaganza. But other than that, the month is so clear and I love it.

Yarn Along: Digging into the stash!

books, knitting, Jane Austen, yarn alongEmily DeArdoComment

I don’t know what it is about vacations but it always seems to give me mental clarity. Does this happen to you?

One of the things I was thinking bout when I was in Texas (which I will write about soon!) is knitting. I didn’t bring a knitting project with me, but I was thinking about what to do with some yarn I have and hadn’t used. That lead me to remember this kit that my parents got me for Christmas, for a shawl called “Take It All.” The kit uses one main color (that’s the ‘natural’ color you see) and a mini-skein kit for the contrasting colors. I thought that would be a great project to work on. I wanted something pretty simple but also fun, and this checked all the boxes. (You can see a version of it knitted up here)

I also decided wht I’ll be knitting next, so I have my updated “knitting queue” ready to go. It can be so overwhelming to have yarn for so many projects, and to have a huge Ravelry queue, so sometimes it’s easier for me to write a “top three” list and then work down that.

My Ursina sweater is sort of in limbo because I have to learn how to do magic loop! So I’m taking a short (I hope) break from it. I finished my Quinidici shawl, and that was a lot of fun. I especially liked working with La Bien Aimee’s cashmerino yarn! I used Winterfell, Hegelia, and Nymeria for my Quindici. (I bought the yarn with birthday money—a very good expenditure if I do say so myself!) I actually have a ton of Nymeria left so I’m thinking about doing another quindici with two other colors…hmmm! (You only use a little of the second contrast color in this project.) I mean, waste not want not, right? :)

As far as reading: I love visiting a little independent bookshop whenever I visit Diane. So we made a trip to the Blue Willow Bookshop!

It’s so adorable and it’s home to lots of amazing things. I bought two copies of the 200th anniversary edition of Emma for Di and I….she’d never read it, except in its Baby Lit version:

Johnny: Emewee, are these the same book?

(Yes I have multiple copies of Emma, don’t judge.)

When I do the full Houston write up I’ll include book links.

What are you making/crafting/reading?







Deo Gratias!

Catholicism, CF, life issues, politicsEmily DeArdo1 Comment

On the Solemnity of the Sacred Heart of Jesus, it is so appropriate that one of the worst SCOTUS decisions in history is overturned, joining Dred Scot and Plessy on the ash heap of history.

Every since I was old enough to know what abortion was, I—and so many others—have prayed and worked for today. This is a victory for the pro-life movement, and I don’t think it’s a bad thing at all to take today and celebrate and give thanks for this.

I am happy on a more personal level as well. If you’ve read my book, you know that I have often had people tell me that people with genetic diseases are not “worthy” of living, because our lives are too hard or we suffer.

Ninety-six percent of babies who are discovered to have CF in utero are aborted.

Today, that number will begin to decrease, and more people like me will have a chance at life.

It’s important to note that Dobbs doesn’t make abortion illegal in the United States. Instead, it throws the matter back to the states (which is where it should have been all the time.). Every state can determine their own abortion laws.

This is not the end of the pro-life movement. In the words of Winston Churchill, “It is the end of the beginning.”

We know that there is work to do to change perceptions. We know that more pro-family legislation is needed, and we need to continue to support the work of maternity/crisis pregnancy homes, pro-life charities, and other supportive networks.

If you want to contact your state legislators about this, be sure to do it politely (always, please, especially if you’re calling them).Let them know that you support legislation that helps the vulnerable. See what your state already has and then work to support it, financially, materially, or with your time. I’ll be compiling a list of resources later, but you can always start with the Sisters of Life, who do such great work in the US and Canada.

And let’s stop talking about how children are barriers to our lives, OK? Let’s stop talking about how women have “fewer rights” then men. Women, it’s time for us to stop believing the lies that the sexual revolution taught us. Sex is not free. Having sex with multiple partners is not liberating. Let’s reject this mindset for the lie it is. Let’s teach our daughters that. Let’s not continue to perpetuate a lie—which is really a malicious, twisted lie—that sexual freedom is a good thing, that we are “entitled” to do whatever we want, when we want it. That’s a perversion of our freedom.

There are certainly times when women find themselves in situations that they didn’t expect. The pro-life movement is there for them. We need to champion life in all its stages, and Dobbs gives us the framework to start doing that legislatively—but it also gives us the freedom to start doing more outside of the statehouses, to step up our advocacy and demonstrate that it’s truth that sets us free.

Women deserve better than abortion. Children deserve better than abortion. We all deserve better than a culture that takes innocent lives and treats them like garbage, and cloaks its satanic mission in words like “care” or “health decisions” or “choice”.

Today is a victory for life.

Let’s celebrate it, and then continue our work.

(NOTE: normally, I let the combox be totally open. But I will delete any comments that have bad language on this post, OK? I would do that anyway, but….just a reminder.)

Travel Tips: How I Travel With All My Medication and Medical Stuff!

CF, transplant, travelEmily DeArdoComment

I don’t leave home without my pink InPen, obviously. :)

A lot of people assume I am a “bad packer” because I always have to check a bag—I can’t do any trip with just carry-ons. That’s not because I bring a lot of stuff for fun—it’s because I have so much medical stuff to pack! Traveling is easier now that it was pre-transplant because I don’t have to bring machines with me, like my aerosol machine and nebulizers, and all the parts that go with that. But I still have quite a few things that I have to take with me, so I thought I’d give you my tips and strategies in case you ever need them.

The first thing is my big bag of meds. I probably started doing this about 10 years ago. I keep all of my medications (except my vitamins) in a large zip top bag. (I use one of these). That way I can just grab the bag and go (this was actually done in case of random hospital admits. My parents would be able to just grab one bag and take it to the hospital without wondering if something was left behind.) When I travel, I do put my supplements and vitamins in here, as long as they fit. If the bottles don’t fit, I just put them in plastic bags. The reason I take the bottles along is in case I need a refill or something happens (always be prepared!), I have the pharmacy bottle and people can see exactly what I take. It’s also good in case I get stuck somewhere longer than I had planned; this way I have all my meds with me at all times.

Once I’m at my destination, I don’t have to carry my meds around with me, because they’re morning and evening meds, so I just take them with breakfast and whenever before bedtime is at my destination. (In Denver, I took them whenever we got back from my sister’s house.)

The big bag of meds on my insanely covered kitchen table!

Second is my insulin and other diabetes things.

I always carry in my purse my glucose meter (just in case my continuous glucose monitor has a hiccup) ,as well as backup insulin (both types), pen needles, and my emergency glucagon kit (this is “emergency glucose”, basically.) I keep all of these things in one of these pouches and that pouch always lives in my purse. I also try to remember to keep candy in this pouch in case I need it. I make sure my glucose monitor has lancets and plenty of (non-expired!) test strips. I will also keep two cartridges of short acting insulin for my inPen in there when I travel, so if I had to reload it when I’m out I can do it easily. (The inPen is the pink item in the top picture.)

Here’s what goes in the blue pouch: Pen needles, backup insulins, emergency glucose (in the red case) and my glucose meter. There are more pen needles inside.

For traveling, I have to bring more insulin. I take two kinds: short acting (right before meals) and “intermediate acting” that lasts for about 10-12 hours. These live in the refrigerator until I need them. When I travel, I take the supply I need and put them in one of these pouches* (do you see a trend here with pouches?) These pouches are great because you don’t need ice or ice packs! They work with cold water and keep insulin cold for up to 45 hours. These are fabulous and they come in tons of sizes!

So what I do is prep the pouch the night before and then stick my insulin in there. I pack waaaayyyy too much insulin—I’m getting better about that!—but I’d rather have too much than not enough. It stays in a refrigerator once I get to my destination (if you don’t have a fridge, you can use the pouch—there are instructions for continual cooling included) and then I prep the pouch again the night before I leave. When I get home, the insulin that I took with me is first in line to get used at home, so that way there’s no issues with waste or things not being cold. (My insulin can be used at room temperature as well, as in, it’s not “bad” if it’s at room temperature. I just use it first. But not all types are like this, so check yours!)

The other things I pack are: keto urine test strips, and a backup continuous glucose monitor, in case the one I’m wearing comes loose or gets accidentally removed. I also pack alcohol wipes. I put the monitor and the alcohol wipes in their own plastic bag and hopefully I won’t need to use this, but better safe than sorry!

The third thing I pack is candy or something that will raise my blood glucose if I need it. This is usually candy or a non-diet drink (like regular Gatorade that I’ll pick up at the airport if I’m flying). If I’m staying with someone I usually ask them to get me regular orange juice just in case I need it. (Or really any kind of juice, orange juice is my current favorite.) For the trip to Denver I put a few boxes of Sour Patch Kids in my luggage and in my carry on backpack, and picked up some additional candy and Gatorade at the airport. (This is also useful for taking my meds, since some of them are really nasty if taken with plain water! Steroid, looking at you.)

You can see, this is quite a bit of stuff; it all goes in my carry-on, which also holds my makeup and anything else I don’t want to risk being lost (like jewelry) and my chargers, which I need for my phone, but also my cochlear implant charger. My extra CI battery goes in my eyeglasses case, which is also in my carryon, as well as my contacts. (I have two CI batteries; one that is the backup and one that’s being used. I try to rotate them daily so they don’t wear out quickly. A battery can last up to 24 hours when fully charged.) In case you’re wondering, I use an LL Bean backpack as my carry-on, because it has lots of compartments and it’s extremely sturdy.

And that is all the medical stuff I pack! Whew! I really find that the pouches are great in keeping my organized, so I highly recommend those. I don’t use any pill boxes because I can remember what I need to take and for me it’s easier to just dole out the meds individually each day. This is my system, and it might not work for you, but I hope that some of these times are helpful!


A Truly Massive Birthday Yarn Along!

books, yarn along, knittingEmily DeArdoComment

In the words of an Eva Cassidy song, “People get ready”—there’s a lot of yarn and books to discuss!

For my birthday, I received a lot of books and yarn gift cards/money I used on yarn. Since it was a milestone birthday I definitely was spoiled! I can’t wait to walk you through the goodness.

The yarn you see above was bought with some birthday money. It’s La Bien Aimee’s cashmerino yarn, all the way from Paris! Aimee, the owner, is known throughout the yarn world for her amazing colors and yarns, and I was so glad to be able to finally get my hands on some of it. From left to right, the colors are: Nymeria, Hegelia, and Winterfell. Knitting with it is a delight! I’m turning the yarn into this project.

I love blue, but I don’t actually have a “plainer” blue lightweight shawl or wrap, and that’s something I definitely need in my wardrobe, so this is a good addition to my knitted accessories repertoire. (By “plainer” I mean, one that’s mostly shades of blue and isn’t knit up with other wilder/brighter colors or mixes and that is also lightweight. I do have a shawl that is mostly blue and gray, but it’s a sport weight so it’s a little heavier than what I’m currently knitting up.)

Onto the next batch of yarn! Behold!

Wanna talk wild colors? We got your wild colors right here!

This is more La Bien Aimee yarn, but this time I got it from a US store, so I didn’t have to pay shipping and I could pay in dollars, not euros! Yay! :)

Knit Stars is both a knitting masterclass series and a yarn store in Tulsa, OK. Every Spring and Fall they rearrange their “hot loops” wall, which is a bunch of projects and yarn they’re featuring that particular season. This spring, knitter and designer Gaye Glasspie (aka, GG, aka, the Iconic Orange Lady) designed the wall and picked the projects. So obviously orange figured in a BIG way.

At first I wasn’t sure about this because….orange is not really a color I use. My friend Andrea loves orange. But I am not really much of an orange person.

However I did want more LBA yarn….

And these flowers arrived on my birthday, which was also the same day as the Spring Hot Loops wall reveal:


Hmmmmmmmmm. That’s a lot of orange! And bright pink! And purple!

And the yarn could capture these flowers and I could have a shawl that would echo these flowers and pay homage to a special birthday……

BINGO.
So I’m making my second Find Your Fade shawl using these colors, which is the LBA Merino Aran base. (You can get it at KnitStars here) My Ravelry notes are here. The shawl is originally designed for a fingering weight yarn, and I’ve obviously bumped it up several thicknesses to an Aran base, but I’m using the same yardage amounts (which means I’ll need to order more of some of these colors). I’m also only doing one lace repeat per color, which is also what I did with my original Find Your Fade. (This is a shawl that can be huge.)

Here are the colors in the order I’ll be using them in the shawl, starting at the bottom (blue) and working up:

From bottom: Hegelia, Winter Garden, Sari, Fiori, RGO, Le Littoral

I just couldn’t wait to start….so I didn’t….and I’ve finished two colors (Hegelia and Winter Garden) and moved on to the third (Sari)! I am seriously obsessed with this project.


Sari comes in…

Whew! I love it! And I’m still working on a baby blanket for Miss Alice and I’m about to start the sleeves on my Ursina! Hopefully I’ll have some finished objects to show you in May!

Now let’s talk books.

I got a lot of book gift cards for my birthday so I, of course, got a lot of books with them. There are so many that I think I might share them with you over the coming weeks (and Yarn Alongs!). So let’s take the first four: (yes, FOUR!)

Time for Tea* is in the first photo. This is from Fortnum and Mason, the big food emporium in London. If you’ve been reading here for awhile, you know that I love tea! So this book discusses the history of tea, types of tea, hat tea is best for various occasions, and also, recipes for tea time! It’s gorgeously produced and its cover is Fortnum and Mason’s signature “eau-de-nil” color.

The second book, which is perched on the shawl above, is Queens of the Conquest: England’s Medieval Queens.* You should also know, if you’re a longtime reader, that I am an anglophile. A big one. :) My friend Amilia got me this book, because we both share a love of British history. Weir has written many, many books about British royalty—both fiction and nonfiction—and this is the first in a series that will look at England’s early queens. I really loved this book and I loved taking notes and adding to my research files, because, yes, I do research files for fun, because I am a nerd! The second book in the series is Queens of the Crusades: England’s Medieval Queens*, which I need to read next!

I also just finished All The Queen’s Men*, which was another birthday book. I actually got the first book in the series, The Windsor Knot*, too. The books revolve around the premises that Queen Elizabeth II isn’t just queen—she’s also. sleuth who has been solving mysteries since her father, George VI, was on the throne. with the help of her Assistant Private Secretary, Rozie, and a retired member of her protection detail, she cracks the case of a murdered pianist in the first book, and a murdered housekeeper in the second.

This installment definitely has a British flavor, doesn’t it? I didn’t just get books about England for my birthday, I promise. I’ll share the rest of them soon!

Forty

CF, essays, organ donationEmily DeArdo1 Comment

I’m forty.

I wasn’t supposed to be forty. This was a birthday I was never supposed to see.

When I was diagnosed with CF, the average life expectancy was mid-thirties. Then I almost died at nineteen.

If my organ donor, Suzanne, hadn’t made the decision to donate her organs, I’d have died at twenty-three.

But she did. And seventeen years later, I’m forty.

FORTY.

Unlike a lot of people, I don’t dread my birthdays. I celebrate them with full vigor, and this one, especially, was celebrated to the hilt.

My door was decorated by my brother Bryan and my sister-in-law, Sarah.

They also sent me a truly stupendous bouquet of flowers.

That night, my parents hosted a party for me at a local restaurant. We had a private room!

I did the name cards!

(Sarris chocolate is my favorite chocolate in life. It’s a Pittsburgh-based chocolate company and I’ve been eating it since I’ve been old enough to have teeth. My grandma used to have little bowls of their foil wrapped Easter egg chocolates in her house and I loved to eat them. So I thought they’d be a sweet treat for our guests!)

Some of my favorite people were there…..

Amilia came all the way from Illinois for the party!

Tiffany and Bill were there! (Alice was with her grandparents.)

Mary was there!

If you’re read Living Memento Mori, then you know about Rita, one of my favorite nurses—she was at the party!

And my brother and SIL were there too!

It was a fabulous party—it went on for four hours, which didn’t seem quite possible.

It was, simply, way too much fun.

Suzanne made all of this possible. She makes my writing this possible.

If you’re not an organ donor, please consider it. You can sign up online here.