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Baby Hermione wishes you a very happy Halloween and All Saints’ Day. :)
Last night Maddie went to her first Trunk or Treat at their parish! She wasn’t sure if she wanted to go—she refused to get into costume initially—but eventually she decided that it sounded like a good time.
She’s also greatly enjoyed playing with the pumpkins! There was even a trip to a pumpkin patch (more on that in her monthly write-up.)
Happy Halloween!
Fall near my transplant center
Social media can be a den of vipers, as the Bible says.
But it can also be a great place to correct myths, evangelize, and truth-tell.
Last night, a friend of mine on Twitter directed my attention to a thread (by a doctor, no less, sigh) talking about how only the “wealthy” get transplants. She (my friend) was wondering if this was actually true.
It is not, and I did a short thread dealing with the issues she talked about, but I thought it deserved longer (and slightly more permanent) treatment, so, here we go! Time to myth bust.
Transplants are expensive. It’s true. It’s not just the cost of the surgery, the hospitalization, and the rehab, it’s also the cost of the medications that one must take in perpetuity. That’s why, when you’re first being worked up for possible transplant listing, an insurance check is run. What that means is that your policy is looked at and its coverage limits, etc. are determined. Back in the day when I got mine, my policies (they were different as I went through the process) had a cap of a few million. (Yes, a few million.) That covered the surgery, the hospital stay, the rehab, meds, and also some of the relocation costs, because a lot of people have to relocate to their center for a few months if they don’t live nearby. I did not have to do that, a thing for which I am eternally grateful. So no, I didn’t use all of the cap for my surgery and recovery. But it was there.
The medications are key to transplant success. If you don’t have them, you will die. Ciao, adios, kaput, end of story, Elvis has left the building. You get the idea. So you either must have insurance coverage for them, or you have to be eligible for the low-cost co pay cards that drug companies offer.
The hospital doesn’t run this step just to say, “well, sucker, you don’t have good insurance? TOUGH LUCK!” They do it to get an idea of what you have, but also to get you help if you need it.
Medicare covers transplants, as does Medicaid. So the idea that “only rich people” get transplants isn’t true on its face.
But yes, the hospital has to know that the patient can access their medications, otherwise the transplant isn’t going to work. Before I was discharged after my transplant, the transplant pharmacist had my parents bring in all the medications we’d gotten from our local pharmacy so she could double check that everything was correct. It’s imperative.
But even if we stripped away all the monetary things—let’s say we had the magical Medicare for All that some parts of the left talk about—that doesn’t mean that everyone would get listed. Why?
I’ll tell you.
To be a good candidate for transplant, you have to check a lot of boxes. You have to be sick enough to need the surgery, but strong enough to survive it. You have to be cognitively capable of understanding when to take all the medications, what symptoms to report, how to take the medications, and why you need to take them. You have to have at least one caretaker during the initial process, because you won’t be able to do things on your own for a bit. (I couldn't drive for three months post-transplant.) You have to have appropriate housing (ie, nothing from Hoarders). You have to have reliable transportation so you can get to and from appointments and tests.
And you have to have a record of giving a crap about yourself.
I’ve told this story many times, but it’s worth rehashing here. At my last CF clinic appointment before transplant, I was sitting in the waiting room next to a girl about my age (early 20s). She had a baby with her. She told me she had two other children and she lived with her mother. She was on IV antibiotics, but she was sort of haphazardly doing them. And then she told me that she knew that she wasn’t doing well and that she needed to find a better living situation and take care of herself better, but that she was “going to die soon anyway” and so what did it matter?
My heart broke for her—it still does. I often wonder what happened to her. She knew that she wasn’t taking care of herself, she knew it was going to lead to nowhere good, but she didn’t change it.
She is the type of person who is not eligible for transplant. You have to be willing to change things if they need changing. You have to be willing to fight for yourself. I don’t know if she was just tired by all of it—because we all have those days—or what. But she was pushing her body to its event horizon very quickly.
I also remember neighbors I used to have, senior citizens who were husband and wife. The husband had quadruple bypass surgery. His wife, a compulsive smoker, continued to smoke even after his surgery. She would laugh if off as we talked outside—I tried not to get too close either, because the smoke wasn’t good for me, but I didn’t want to be rude.
Transplant doesn’t just affect the patient, it affects the families. You can’t have certain pets in the house (ie, birds). No one in the house can smoke. Certain foods are off-limits for transplant patients (ie, grapefruit). The family has to be willing to support the patient through the process. You can be as wealthy as Scrooge, but if you don’t have someone to help you through it, that money is not going to help you get listed. There’s a psycho-social evaluation component to listing as well.
And even when all the stars align, that still doesn’t mean you will get a transplant.
My friend Sage died waiting. I have no idea why she died, and I didn’t. I have no idea why I’m here today, other than God must still have something for me to do. I got damn lucky and all the stars aligned.
There are not enough organ donors to meet the demand for them. This is especially true among minority populations. If you want to increase transplant equity, this is great place to start, and UNOS is already doing good work here, but it needs amplified.
It’s very easy to say, “Oh, it’s all about money” but it’s not. It’s easy to say many things about transplant that aren’t true.
But transplant medicine is the most intense high-wire act in all of medicine. Even when all the stars are aligned, it’s not guaranteed to happen. That’s the truth.
“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!
Maddie is nine months old!!! I cannot believe this. I know I say that every month, but watching her grow is such a treat.
Here’s the report from her mom:
Can walk with assistance
Stand/ Walk against the couch
Is way more vocal!
Recognize her name!
Has found her ears and nose… likes to put fingers in them!
Has grown a ton of hair
The hair is fabulous.
Has 6 teeth!
Is turning pages of books
Can drink from an open cup!
She might like hummus. A little bit. Maybe.
Fits in size 18 month clothes
Doggy and Kitty; she gets so excited when she sees them and tries to throw Duke his ball
Maddie and Duke, best buds.
Command Center
Hook ‘em, Horns!
Picking grass
Alone time in her crib
Eating!
Falling off the couch and mommy catching her
Facetimes
Auntie Em likes them too, because she can take picture like this that clearly show the chompers.
Taking selfies
Looking in the mirror/ photos of her
Smacking noises
Splashing in the tub!
Books
LOVES the lights to be turned on and off
Sleeves; never
OK she might not like sleeves, but I ADORE this photo.
To be put down
Being left alone
Getting her face washed
Her changing table, especially when she’s tired
Monthly photos:
I’m thrilled that Living Memento Mori has been selected as part of the Seton Shrine’s Memento Mori book club series!
The other books in the series are written by Sr. Theresa Aletheia, who wrote the foreword! So you know this is going to be a great series.
The Seton Shrine is the shrine of St. Elizabeth Ann Seton, located in Emmitsburg, MD. You can register for the online book club here; it starts on October 13 (so next Thursday!) I will be joining the book club on the last meeting date (November 17) to do a Q&A!
You can purchase your copy directly from the Shrine if you don’t already have a copy.
You can also register for the entire Memento Mori series and save 35%!
The Seton Shrine is home to St. Elizabeth Ann Seton’s grave, a basilica, a museum, and several historical sites. It’s a wonderful place to visit and I am so glad they chose my book for their book club!
I hope to see you there (virtually, that is)!
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!
Being the Anglophile that I am, the past week has been pretty much non-stop immersion in British media (especially the BBC’s streaming) and soaking up all the history and pageantry that comes with the death of a monarch.
The royal website upon the queen’s death.
I had written the queen a letter—a brief one—at the time of her Platinum Jubilee, just expressing congratulations and thanks for her service. I didn’t think I’d get anything back, since I’d read that the postage allowed to the monarchy offices had been reduced in the last round of government austerity, so I just sent the note without expecting anything. I just wanted to say thanks. (I think it’s important to say thank you to people!)
When I went to my mailbox yesterday, I found this—the card was postmarked the day before she died.
It was a card from the queen thanking me for my note.
The front of the card, with her royal cypher.
Image on the back of the card.
Getting this card, during the time we’re turning the queen’s passing, was very memorable (And a little it eerie, if I’m being honest!). It’s definitely something that I will treasure!
I cannot believe that Maddie is EIGHT MONTHS OLD.
Time is surreal when it involves kids.
Here’s what she’s up to, from her mom:
Maddie can:
Sit for a long period
Stand with very little assistance
Trying to bounce!
Crawl!
Use utensils
Use her voice.. loves to scream and babble
Now drink out of an open cup and a 360 cup (by herself!)
She puts herself to bed now
Trying to crawl toward Bella (the cat) and pet her
Know the words “mama” “doggy” “bottle” “night night” “daddy” “bath”
Maddie likes:
Audio books
music
Her “command center” (it’s a sort of baby gym—she goes in the center and she has toys all around her in the circle, but the bottom bit isn’t stable, so she works on her muscles while she’s playing )
Fishy and Sophie of course (toys :))
Her stacking blocks
Using utensils herself! Don’t help her!
Going out to eat
Car Rides
LOVES Doggie (Duke their dog)
Lemons and limes
Swings!
Looking at herself in the mirror
Maddie does not like:
Sleeves
Being overtired
Put in stroller (initially or when it’s not moving)
Face being washed after meals
She likes limes and she cannot lie.
Maddie and Duke
Monthly pictures:
(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.
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!
Brace yourselves, everyone. Maddie is seven months old. Ahhhh!
Here’s the monthly update!
CAN DO:
Sit up for a good amount of time!
Blow raspberries and babbles a ton. She loves blowing raspberries!
Getting really close to crawling!
Mama thinks she’s getting another tooth, and she has her first dental appointment!
Say Maaaaaa….we think :)
Feed herself!
Recognize people in pictures
Playing peek-a-boo!
LIKES:
Giving Duke some of her food. (She’s eating some solids, and she will drop things for Duke to eat. He loves it.)
FOOD! We love food!
Giggling
Here she is her in favorite chair! She can sit here and supervise whatever Mama is doing.
Seeing people. She’s so, so social. And then talking to them.
Audiobooks!
Her pool
Watching English Premier League with Dad on Saturdays
Still loves playing with her feet
Going outside
When grandma (our mom) blows bubbles at her on FaceTime!
Songs
Adventures. She goes on a lot of them. Car rides are so fun!
She and Duke are very good buddies. (Duke is their dog)
At the local coffee shop with Mom and Fishie!
DISLIKES:
Being ignored, ha!
She doesn’t seem to like bananas—as in eating them as they are. She likes them pureed, and she likes to play with them, but eating them? Nope.
Cold food—still not a thing she enjoys!
Sleeves!
When she can’t see her mama—although with the peek-a-boo playing she’s getting OK with this. :)
Gallery:
One month
Two months
Three months
Four months
Five months!
Six months!
Last Saturday :)
Last weekend, I made my first sourdough loaf!
I know, I know, everyone was doing this in 2020. But I didn’t have a starter in 2020, and I didn’t want to mess around with making one.
So when I visited Diane and crew this summer, I made a point of asking for a sourdough tutorial, because Diane makes it frequently. And she obliged me!
Patty enjoys the fruit of her mom’s labors—sourdough and penne with homemade sauce!
I wrote it down carefully. I asked questions. I was given some of her starter, which was carefully placed in my suitcase.
I fed it for about a month, every other week. And then this weekend, once I had all my equipment, I made it.
And it was yummy!
The nice thing about it, I think, is that you don’t have to knead it—at least not in Diane’s recipe. You do stretch the bread a few times, which is like kneading, but it’s not the intense kneading you need either by hand or with your stand mixer. That was nice.
Starter after sitting out all night…
I was a little worried after adding the flour and water because it seemed so dry. But Diane said it was OK!
It looks dry but it’s FINE!
And indeed it did become more and more “dough like” as the process went on.
After the first fold
After the second fold, about to go into the proofing basket. Lovely!
It went into the floured proofing basket and flopped perfectly into the Dutch Oven…..and came out looking so pretty! And it was delicious!
It has a nice crust, sharp but not so sharp you can cut yourself with it. It’s chewy, but not too chewy. In short, it’s good bread, and I might be addicted to making it now. Next time I will let it rise a little longer so that it’s a bigger loaf with a slightly more pronounced sourdough flavor.
If you want to try Diane’s recipe, here it is! (With my notes) (NOTE 8/9/22: The document has been updated!)
Have you ever made sourdough? How’d it turn out?
(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.
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*.
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
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.
So many of you will remember that I was a Jeopardy! contestant back in 2016! (You can read all about that here.)
I have FINALLY found the episode online! So if you want to watch it, here you go!
(I can’t embed the video because there are restrictions on it, sadly. But that link works!)
Ave Maria Press is running their big summer sale from July 11 to July 24 on their website! Use the code SUMMER22 at checkout to save 25%!
So of course that means it’s a great time to stock up on Living Memento Mori!
Get copies for yourself, and for friends and family! This is a great time to do it and support your local Catholic author.
Me and my first niece, the Maddie Bear!
There’s something about this transplant anniversary that just hits differently. Maybe it’s because it’s seventeen, which is getting up there in transplant years, and it feels more remarkable. I think it’s because some big things have happened in this transplant year.
My sister became pregnant, had Madeleine, and I got to meet the sweet little girl, who is my first niece! Then my brother and his wife announced they too are pregnant, with a girl, so I’ll have two nieces by the end of January 2023. Wow!
Something about nieces just hits differently. Maybe it’s because of the genetic connection. Maybe it’s seeing my siblings become parents. Maybe it’s both? It’s undefinable, I think. It’s just a special thing, to be an aunt. It’s different than being a godparent, which I also love!
How can you resist Patty? You can’t.
And I turned 40, which, to be honest, wasn’t something I was sure I’d see. But I did.
When I was twenty-three, my sister hadn’t met her husband. My brother had met his wife, but they weren’t dating. Diane, Patty’s mom, wasn’t married yet (although she was dating her husband) so her kids weren’t even thoughts. (Well maybe they were thoughts. haha.) My godson was seven years old.
So many things hadn’t happened yet.
Thanks to Suzanne (my organ donor) I was able to see all these things, and more.
I CANNOT believe that Madeleine Grace is six months old! Holy moly!
We’re leading off with a picture of her in the Stanley Cup Champion Avalanche onesie that people at the grocery store dearly loved (as well as dearly loving her cuteness).
Here’s what she can do, what she likes, and what she dislikes, at six months!
CAN DO:
Feed herself bottle pretty much independently
Sit in high chairs/ shopping cart! (See above!)
Laugh!
Trying to crawl
Brush teeth
Look for objects when she drops them
Very vocal! Especially when she is not paid attention to
Sleeps with her pacifier and will grab it to self soothe, she likes chilling in her crib before we get her.
She LOVES:
Baths and the baby pool! (Hoping to do “big kid” pool soon)
Balls
Sitting in the high chair
Duke the Doggie—She laughs when she sees him and when he gives her kisses
Falling asleep to audiobooks. She will turn her head toward Alexa when Mom hasn’t turned it on yet.
Tummy time. She just loves to move!
Going to the park and watching all the bikers/ walkers.
Playing with her feet
Going on a adventures
The lotion song, or basically any song (Melanie has many, many songs for Maddie, they’re all adorable)
Playing with her feet
Being outside
DISLIKES:
When mommy is out of sight
When other people put her bed
Sitting too long— she gets bored
When people are talking but not to her (ha! This sounds a lot like when her mother was little :) )
When she is tired
When she drops her bottle / ball
Staying still for diaper changes (Her Aunt Emily also struggled with this. :)
newborn
One month
two months
3 months
4 months
5 months!
Six months, cowgirl!
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?