Emily M. DeArdo

writer

A day trip to Waynesville, Ohio

family, travel, ohio, journalEmily DeArdoComment

So, two weeks ago was my cousin's first communion day. My parents and I were planning on going to Pittsburgh to celebrate, like we do for every first communion, but since this was the last of the grandbabies, it was going to be sort of bittersweet. 30 some years of first communion parties, over! 

The day of the party, my mom got a call from my uncle--my aunt was sick, so the party was cancelled. :( But we were all up anyway, and dressed, and it wasn't even ten o'clock, so....we decided to take a road trip down to Waynesville, Ohio, a little village in the southwest corner of our state. 

First order of business: Food. 

 

The food at Cobblestone cafe was amazing, guys. You even get complimentary chai tea lattes at the end of the meal! They're tiny and adorable! The cafe is also a shop, so you get two great things in one place. Mom, Dad, and I are hard-pressed to find a place that all of us like equally when it comes to eating, and Cobblestone fit the bill with their amazing menu. And dessert. Can we talk about dessert? Holy moly, it was good.  Key lime pie! Pina Colada sundae! (Or was it a cake thing? I can't remember. It was good.) 

I will take one of each color, please.... (taken at Cheap John's.) 

I will take one of each color, please.... (taken at Cheap John's.) 

 

I had way too much fun shopping, and so did my mom--and even my dad. (He is a licorice connoisseur and he found homemade licorice that apparently passed His Testing at Cheap John's.) 

The town is full of craft and antique shops, and I found a yarn store (of course), where the excellent proprietor gave me a free (?!) yarn book and even gave me some advice on the knitting project I was shopping for (it's this one--it won't be made for awhile yet, but I was glad to get advice and find the yarn I needed for this project!).  She had recently worked on the project with another customer, so she gave me needle and gauge advice! Win! 

Waynesville isn't far off I-71, so you're close to King's Island in Mason, and also Cincinnati proper, so, in theory, you could probably stay at a Waynesville B&B and visit these places from there--or visit Waynesville during a Cincinnati trip. It's only a little over an hour from Columbus. Perfect day trip distance.

Flowers outside the Cobblestone Cafe. 

Flowers outside the Cobblestone Cafe. 

 

It almost felt like a movie set, it was that cute. I think all of us want to go back soon, and since it's so close, we can definitely make that happen. Besides, Dad wants more licorice! 

 

The Simple Things

journalEmily DeArdoComment
It is the sweet, simple things of life which are the real ones after all.
— Laura Ingalls Wilder
This candle always reminds me of college, specifically my freshman year. One of the girls who lived next door to me kept this candle on her desk.  

This candle always reminds me of college, specifically my freshman year. One of the girls who lived next door to me kept this candle on her desk.  

Even after just a few days of hospitals, it's so nice to get home to my nest and be surrounded by what Laura Ingalls Wilder called "the sweet, simple things".  Candles, books, journals, my favorite pens, pillows, and even pretty soap dishes--it's nice to be home. 

(sources: Live Thankfully pillow and ceramic berry basket Elm and Iron

Surgery wrap

healthEmily DeArdoComment
IMG_4943.JPG

Above: Post-surgery necessities .

I'm back! I didn't have to stay overnight, either, which was great. 

So, mostly the surgery was uneventful. The nurse I had didn't want to use my port because she was afraid it would get infected. Um, OK? I mean, unless you're planning on rolling around in mud with hogs and then inserting it, I think we're good. Anyway, Dad and I made it clear that the port was all I have going on, good vein access wise, so people came in and got it going. Per it being mine (and therefore, difficult), it took two tries to get it working, but once it got going, it went merrily on. 

The anesthesiologist was a Penguins fan, so I appreciated that. I tend to get really nauseated after surgery, but this time the hospital gave me a little anti-nausea patch to wear, that worked like a charm! I'm a fan!

The only other issue we ran into pre-op was what to do with my CI. Since we were moving scalp around, I didn't want my CI to become lost in the process. At the same time, I needed to be able to hear if people were talking to me in the OR. So I managed to keep it back into the OR with me, but not my glasses, which annoyed me, since lip reading and being able to see are important to my being able to figure out what's going on around me. Oh well. (Another difference between a children's and an adult hospital--at NCH, I can keep my glasses with me the whole time. Makes my life easier.)  

The surgery took about an hour and then I was in the recovery unit for awhile. Dad and I got home around 5:30, 6:00, and I had a very small dinner because I had a very sore throat, and was in bed by nine. God bless Halo Top ice cream! (Yes, I've been intubated many times before, but I don't remember it being quite so uncomfortable after. But whatever. It's fine now) 

Today I am feeling pretty good. The pain meds I have keep the pain really well in check, which always makes me happy. I'm not allowed to exercise until next week, post-surgeon clearance, so there's going to be a lot of reading happening this week. Not that I mind that. I can make a dent in my book pile! 

The other thing is the lovely dressing I have on my head. I can shower--yay!--but there is part of the area that the surgeon left open to drain a bit--in order to get it to close he would've had to have made a much larger incision. So we're just letting it drain, but that means I have to keep ointment on it, and gauze pads. It's not nearly as bad as post-Mohs, or even immediately post-surgery, but it will look sort of odd. I'll probably be trying to hide it under my hats. :) 

 

 

Les Incompetents

healthEmily DeArdo4 Comments

(Credit to my mom for the title of this post!)

This week has been, for various reasons, Full of Wrath. There was general annoyance from having a busy week, trying to get a lot of things done pre-surgery, and my sinuses being silly, which laid the groundwork. Then my hockey team played two EXQUISITELY CRAPPY games. Super enjoyable. (NOT.) But they redeemed themselves Wednesday night and are going to the conference finals. 

However, all of Wednesday (before the Penguins won) was just terrifically wrath-y. Because some hospitals are terrible. Namely, adult hospitals that aren't used to dealing with people who have a complex medical history! 

Settle in for the story. 

As we know, I am having surgery next week. Now, the docs set the surgery date three weeks ago. And at that time, we (meaning me, my family, and my transplant team) asked the surgeon and his staff if I would need any pulmonary testing (like PFTs).  Do I need to see my doctor ahead of time? Etc. etc. 

"No, no, nothing like that. We have our pre-admission testing and that's all you need," they said. 

So I wake up yesterday at 5:15 and get myself to the hospital for pre-admission testing. It is in a small room off, quite possibly, the ugliest hallway in creation. 

Right? UGLIEST HALLWAY EVER. 

Right? UGLIEST HALLWAY EVER. 

After filling out paperwork and listening to a guy have a very loud conversation  on his cell phone in the waiting room, I got called back to register. Here, I was asked to give a "down payment" of $320. 

Yeah. I was thinking a co-pay of like, $40. NOT three hundred and twenty smackers. But I fork over my credit card. You would think, right, that if something like this was coming, they might have told me ahead of time? I've never had to give a "down payment" of any type before.

I'm then seen by a nurse, who goes over my stuff (meaning my paperwork and my med list), takes my vitals, and does an EKG. She is inordinately concerned about whether or not I have sleep apnea. I don't. 

Finally the doctor comes in. This guy is a "hospitalist", and from what I can tell, his job is to basically make sure that I'm healthy enough to survive surgery. He verifies this by listening to my chest and checking my throat. He tells me I can take my meds the morning of surgery, which I knew, but I trust but verify. The guy's nice, but basically useless for my intents and purposes. I have to explain to him how prednisone and immunosuppression affects blood sugars, which is why the last time I was at this hospital, I was on insulin, but now I'm not.....

So at this point, this morning has been a total waste in terms of actual surgical prep, but whatever. We're almost done. 

Now it's time to take blood. 

The nurse had asked me if I have vein access other than my port. "Um, you can try," I said. "Well, we don't access ports up here," she says. * 

At this point, I'm thinking that, if these people had been on the ball, I could've had a blood draw at the Resort, from my port, and had the results faxed over to this hospital. But I had no idea what was involved in this visit, because Adult Hospital told me nothing. So obviously, I could not have made good preparations, because I am not a mind reader. 

My veins are very tiny. My veins are very scarred. My veins are basically terrible. If you want to torture a person, ask him to take my blood. It can take over an hour. For IV insertion, it can take all day. And no, I'm not kidding. There was one time, pre-port, where it took about four nurses all day to get any sort of peripheral line in me. (A peripheral line is your basic IV.) Ergo, I like to save my veins for when we really really really need access and really really really cannot use the port. This doesn't count as a really really really need situation. 

"Our guy is really good," she says. Internally, I roll my eyes. Some people are magical, it's true. But they are few and far between. 

So, the "really good" guy comes in. I know this is most likely not going to work, because he won't have needles small enough for my veins. Which he doesn't. He will also have to be creative in finding a good vein. Which he's not. Sure enough, he sticks me in the back of my left hand ( in a tiny tiny tiny almost invisible vein), which doesn't work. So he sticks me again, near the crook of my right arm, and does manage to get blood. "That might bruise," he says. 

(Yeah, it might. At the moment it's a lovely shade of black, deep purple, and yellow. It almost looks like a spot of velvet. There's bruising, and then there's bruising. My hand looks OK though.) 

So I go home, get lunch, and decide to go over to my parents' house to apprise Mom of the morning. This was a good idea. 

Because, at my parents', Mom gets a call from Riverside. The "really good" tech had ruined my blood samples by allowing them to clot. So we can't use them to run the blood tests. I now have to have more blood drawn

Imagine Beeker swearing, and you'll have a good picture of my reaction. 

Imagine Beeker swearing, and you'll have a good picture of my reaction. 

But at least I can go to Children's and go to infusion. So I finish my lunch, and, in full Wrath mode, drive to Children's. In infusion, my labs are drawn competently! Yay! They commiserate with me, and I leave.  

What makes this even worse? The Adult Hospital didn't even apologize for this massive inconvenience. Not even a form, "We're sorry that this happened."  And what if I was working? I'd have had to convince my boss to let me leave work again to go and get blood drawn. Because, obviously, it must be done that very second. (Seriously. The woman asked my mom when I'd be at the hospital--she wanted a time. I had an image of her hovering over a fax machine, breathlessly awaiting my results....)

(Just a note about blood draws: It's not the blood draws that were bothering me. I've been having blood taken from me regularly since I was a toddler. I'm not afraid of needles and it doesn't hurt. What made me angry was the sheer incompetence and idiocy.) 

When I get home post-draw, I find out that Adult Hospital has now decided they need me to see my pulmonologist before surgery. Meaning, before Wednesday. Meaning, Monday, which is the only post-transplant clinic day. 

Remember how they said I didn't need to do this? Yeah. So do I. 

So clinic, magically, wonderfully, arranges for me to be seen on Monday morning. (And, again, imagine if I was working. I'd have to tell my boss that now, I also need all of Monday morning off. When I was working, Monday morning was one of our busiest times all week.) 

This is why Emily doesn't like adult hospitals. They have no idea how to deal with a medically complex patient. NONE.

Les Incompetents, indeed. 

 


*For the record: ports are not hard to access, once you know how.  My mom was taught by the NCH nurses, and we access it at home every month, to make sure it's working and give it a nice Heparin flush to keep clots from forming. I could probably do it**, if I had the right materials. (I do de-access myself, a lot of the time.) I could definitely walk someone through it. I hate that hospitals don't teach more nurses how to do this. IT IS NOT HARD. It's not like brain surgery, here. It can be taught to any competent person, and performed by a competent, detail-oriented person. My mom does it every month without any issues. But then, she's sort of magic like that. She's also learned to change burn dressings and clean them, give and constitute IV meds, and all other sorts of magical things. 

** Many people do access their own ports. Mine is in a sort of wonky position, so I don't do it. But I know how, if I ever had to. 

 

 

 

 

The forgotten demographic: Catholic Single Women

CatholicismEmily DeArdo8 Comments

(And no, it's not just because I am one.) 

There has always been a fundamental difference between the experience of single men and single women. Single men--"Bachelors." Single women--"old maids." 

Which would you rather be called? 

But the biggest problem, at least where I sit, is when the church gives us the Smug Marrieds from the Bridget Jones novels and turns it into an area of completing overlooking/forgetting/not attending to the single women in their midst. 

Really, don't need to feel like an idiot because I'm not married at church, when I already feel that way from society at large....

Really, don't need to feel like an idiot because I'm not married at church, when I already feel that way from society at large....

This isn't just a parish problem. It's a whole church problem. 

If you are a Catholic single woman who is relatively young (I'm 35, am I relatively young?) , I challenge you to find a ministry that cares about your needs. Most of them say "oh, we cater to all women!" No, you don't. 

  • You don't if at women's conferences, it's all about married women and women with kids (Or it's like, a 90/10 split in favor of the marrieds.) 
  • You don't if there are groups for moms of preschoolers, married couples, older women, men, and youth--but nothing for women or men who are unmarried and older than 21 in your parish, or that top out in the 30s. Because, of course single people who are in their mid to late 30s just don't exist....
  • You don't if the big social events in your parish are dances or things that otherwise require a partner--even if you say they don't. Seriously, who goes to a dance stag once they're out of high school?!  

Now, I can understand that married Catholic women need something that's for them. That's fine. I can see the need there. There's a lot of pressure for married Catholic couples in this society. I can see that they need time alone (as in, sans kids) and to re-charge. Totally. That's a legitimate need. 

But it's getting old, because there is nothing for single Catholic women that aren't discerning a religious vocation. Seriously. NOTHING. Big. Fat. ZERO. And not only is there nothing specifically for us, but the things that are supposed to be for women in general are almost always totally geared to women who are wives and mothers--and it's not advertised that way. 

When I go on retreats, there's almost always a lot of mentions of husbands and kids. Why can't we just focus on being Catholic women?   I just sit there and smile and doodle in my notebook. 

When I read Catholic women's devotionals, there is such an undertone of being geared to wives and mothers. Why?  (And for the record, the Protestant books and devotionals I've read don't seem to do this. Why is that? [And yes, I read them because most of the Catholic ones do not speak to me. At all.] When I read Made to Crave, Uninvited, or 1,000 Gifts, it's not all about the authors being moms. It's about being women. And yes, these women write about being a mom, but it's not the end all and be all of what they write.)  

When I go to my diocese's Catholic Women's conference, a lot of the time, all the speakers are married women. As a single woman, I often sit through talks that have absolutely no bearing on my experience. But that never happens the other way around--a talk about single women, with married women in the audience.  

You can be a wife and mother, and yet talk about things that are applicable to all women

Believe me, I'd love to be a wife and mother. It would make me incredibly happy. But I'm not. I can't wish a husband and children into being a la Cinderella's ball gown.  A lot of Catholic women's organizations do not realize, or meet, the need that single Catholic women have for fellowship (which is a word I hate, but it works here), understanding, and the desire to live out our vocation as a Catholic woman authentically, no matter what our family situation. 

Does this happen to men? At the Catholic men's breakfast or lunch or the men's retreats, is it all about being a husband and a father? I dunno. But I would sort of think not--and hope not, because then they're in the same boat that we single women are. 

And no, I don't think that being single is "my vocation." 

(And also--what about married couples who have no kids? I sort of get the sense that they're in a weird place, too. Because, no kids. )

I'm just saying, throw us a bone once in awhile. Or at least, don't be a Smug Married. Please, please, please, Catholic parishes and Catholic women's groups, focus on all women. Not just the married ones. Not just the moms. All women

How do we do this? I think it's pretty simple, myself: Focus on creating groups that help everyone live out their faith, together. Things like parish-wide Bible studies. Faith sharing groups. Even coffee groups that meet once a month in the evening or whatever, for everyone to get together and talk and pray. Have a book club that's open to all adults. Don't have meetings at 10 AM on a week day that are the only meeting of the women's group! That's great for retirees, but not so much for working young people. 

And in the social media realm--focus on all women. Ensure that if you say you're for all women, that you really are in your representation. 

Now, the obvious response to all this is, "Well, start one! Duh, Emily. Get off your duff!" 

I don't mind running things. My personality is actually really good at running things (I'm an ESTJ, for you Myers-Briggs people) . And maybe, eventually, I'll get there. But this isn't a problem just for me. It's a much larger problem, outside the realm of my parish. And I am, actually, talking with friends of mine about getting things going at my own parish. 

But that's not why I'm writing this. I'm writing this to bring attention to the larger issue that a lot of us face. 

I love you, married women. A lot of you--you know who you are--are great friends and mentors to me. But

Lara Casey said something really good at MTH: All stories matter. 

And yes, that includes the stories of the singletons. 

 

Surgery updates!

healthEmily DeArdo4 Comments
The reaction of most people when I say "skin cancer" is a lot like this.....

The reaction of most people when I say "skin cancer" is a lot like this.....

So, I have dates for my procedures/surgeries, etc.! 

This coming Wednesday, I'm going to the hospital to have the pre-admission testing done. I'm guessing this will just be heart stuff and vitals--like an EKG and regular stuff. It could be more than that, but that's not what I'm anticipating. Apparently I will also be talking to a doctor, for some unknown reason. This isn't normally how I do pre-admission testing at the Resort; in fact, sometimes there's no testing at all, just a phone call from a surgical nurse to get a history. So this is all new and so much fun! (sarcasm off.) 

Next Tuesday (the 16th), I have my Mohs surgery to actually remove the cancers from the top of my head. These are both squamous cells, not melanomas--so it's not nearly as serious as it could be. However, these guys are bigger than what I've dealt with thus far, so I imagine it will take more than two rounds of surgery to remove the cancerous cells. (For more on how Mohs surgery works, read what I wrote about it here.) The procedure is at 9:30 and I'm to wash my hair really well before I head to the doctor's office, which makes sense, given that it won't be able to be properly washed for awhile. 

After my dermatologist removes all the cancer cells, I get to go home. The next day (May 17), I will go to the hospital with my dad to have the surgery which will actually close the spots my doctor made the previous day, and he (my doctor) will do all the plastic surgical magic to ensure I have hair and not bald spots. (You can read about that here.) I may or may not stay overnight at the hospital. But I will definitely spend a day or two at my parents' since I won't be able to drive and can't be left alone for various reasons, so...whatever. No biggie. 

I'm not anticipating this to be any sort of big deal. But then again, when you've basically been cut in half, nothing is a big deal anymore. Really. And even in the area of head surgery, this is low-key on the Big Deal Chart. When I had my CI implanted, part of skull was removed. That, to me, is a much bigger deal. :) There's a magnet in my skull, people. Moving some scalp around? Not  a problem. 

As far as blogging: There will be a yarn along this week, and mayyyyybe next Tuesday before I go in for surgery. But after that, there may be blogging hiatus. :) 

 

What I Read In April

booksEmily DeArdo2 Comments

(This post contains affiliate links.) 

I haven't done one of these in awhile, so I thought I'd get back to them. Although instead of listing everything I read, I thought I'd pick my favorite books of the month. Some of them will be re-reads, some of them will be new to me, and some will be new releases. 

27% of adults didn't read a single book last year. I'm imaging that if you read me, you read books. But in case you don't, or if you want to read more, I hope you find something in these that piques your interest!

(And I'll also include books I really didn't like, if any pop up, so you can avoid them!)

The Wife, The Maid, and the Mistress, by Ariel Lawhon: This was a book club pick, and I really enjoyed it. At first I thought it looked sort of 'eh', but once I started, I couldn't stop. The novel is based on the true story of the disappearance of New York State Supreme Court Judge Joseph Crater, which has never been solved. The novel, of course, offers its own interpretation of what happened. The title refers to the three women in Crater's life: his wife, Stella; his maid, Maria Simon, and his mistress, Broadway showgirl Ritzi. I don't want to say any more, because I went into the book knowing nothing, and I think it paid off for me. But if you like good, absorbing reads, this is one for you. I think it would make a good beach read. 

Inheriting Edith, by Zoe Fishman, also has to do with maids. In this case, a housekeeper, Maggie, inherits a house in Sag Harbor when her former employer and friend, Liza, dies. The catch? The house also comes with Liza's mother, Edith, who has Alzheimer's. If Maggie takes the house, she also inherits Edith. If she sells the house, Edith will go into a care facility. Maggie decides to take the house, so she and her young daughter, Lucy, move from New York City to Sag Harbor to take care of Edith--who doesn't want strangers living with her. 

The characters in this book are really delightful. You want to keep spending time with them. Fishman does a great job drawing the setting and the relationships between the characters, with great secondary characters like Edith's wacky friend from their Broadway chorus line days, and the toy shop owner that Maggie is attracted to. I also loved the character of Lucy--she's a totally believable little girl, who talks just like little girls do. Sometimes novelists make little kids too erudite and well-spoken, but not here. Another good beach read, probably because it takes place at  a beach, but there's a lot of pathos in this book, too. So if you don't like anything that could be sort of sad, this isn't a vacation book for you. 

The Girl With the Dragon Tattoo series, by Steig Larsson. These are re-reads for me--I re-read these pretty regularly, and I don't know why, since crime books aren't really my preferred genre. I don't read a lot of thriller/crime novels. But these, I really like. Is the writing the best? No. But the characters are just great, so I overlook the cliches and sort of stilted writing style so I can enjoy Lisbeth Salander and Mikael Blomkvist. The original trilogy is completed with The Girl Who Played With Fire and The Girl Who Kicked The Hornet's Nest. A fourth book, written by another author (Larsson died before the books were published), came out last year: The Girl In the Spider's Web, and another is coming out this year. I haven't read Spider's Web--I'm not sure I want to read another author's take on Larsson's world and characters. But we'll see. Anyway, I really enjoy these, and they're quick reads. They're big, but with the exception of the last one, they're quick. The last one gets sort of involved with too many characters and Swedish history side notes that slow it down, so it's not my favorite in the series. But the payoff is worth it. 

Grace, Not Perfection by Emily Ley. Emily was also at Making Things Happen, and as soon as I got home, I re-read her book. It's about getting organized, inside and outside yourself--both your environment, and your heart. There's so much goodness in it. And it's a beautiful book. You can really tell Emily loves paper and design, because the physical appearance of this book is just all the goodness. And it's on sale right now for $10! (And remember, Lara's second book comes out in June! Pre-order!) 

The Cardamom Trail, by Chetna Makan. Do you watch The Great British Bake-Off? If not, it's n Netflix. Do it! The first season that we have here (as in, here in the States) featured a ton of great contestants, including Chetna Makan, who was raised in India, but moved to England as an adult. Her entries during the contest often featured Indian spices and inventive takes on classic recipes. So when her cookbook came out, I asked for it as a birthday gift, and my friend Mary gifted it to me. 

This is a really gorgeous cookbook. Yes, the measurements aren't in "American". :-P But you can convert them pretty easily. The recipes are mouth-watering. There are three I need to try almost immediately. I read cookbooks for fun (yes, I'm weird) and this one is just so gorgeous, I almost hate to put it away. There are sweet and savory things in here, as well as things like British "pies", which are what we'd call "pot pies" here in America. It's not just sweet things. If you like to bake, this is a book for you. 

 Did you read anything good last month? What's your favorite fiction genre? 

Cultivate: A new book for intentional, God-centered living

books, goal setting, Making Things HappenEmily DeArdoComment

Guys, I am so excited to share with you a new book from Lara Casey, who is the founder of the amazing Making Things Happen Conference, and the author of Make It Happen

Lara and I in March. 

Lara and I in March. 

Lara is an amazing woman, y'all. She is a true lover of God and a woman of prayer. She is so supportive and a fantastic cheerleader. Without her products (the power sheets!), I would not have been able to accomplish the things that God wants me to do, and I say that and mean it. They helped me get so much clarity  about my goals and what really matters. Make It Happen, Lara's first book, helped me go even deeper, but truly, the conference was a breakthrough. Lara is so generous and shares so much of her hard-won wisdom with anyone who follows her on social media or attends the conference or reads her blog or her books. She has a huge heart for women and God. 

That's why I'm so excited about her new book, Cultivate, which comes out this spring! If you've never met Lara, or can't attend a MTH conference, then I hope that you will get your hands on Cultivate

Lara knows that good goals are goals that are deeply rooted in what mattersCultivate, according to Lara, is a story about God's grace--how it's transformed her life from an instant life into a cultivated life. 

Cultivated lives are messy. They grow slowly. But they are lives that trust in God, and wait on His perfect timing. And believe me, I know about waiting for that perfect timing! I know how hard it is. How often my prayer has been, "God, I know you're in charge, but if you'd just let me see the ending now, I'd be so happy." 

That's not how it works. 

Through Lara's writing and her ministry, I've been able to further my relationship with God, to open up, and to trust more completely in Him. It's been a wonderful boost to my faith and encouraged me to become more rooted in my faith and its practice. And with Cultivate, Lara will share how focusing on what God wants her to focus on has changed her life--for the better. 

So, Cultivate details: It comes out on June 27th, but you can pre-order now! If you do, there's a great bunch of pre-ordering gifts you will receive, like a getting started video, desktop backgrounds, and more (a coloring page!!!!), to help you really cultivate what matters.  The book also has a study guide included! Yay! 

The link takes you to a landing page where you can  preorder (from your book seller of choice),  claim the bonuses, and access even more goodies! 

Lara is real. She's not afraid to share the mess. And in doing that, she helps you do the real work. 

She didn't pay me to write any of this. :) I am so privileged to be a part of the Cultivate launch team, so that's why I wrote this. But it's not an ad--I genuinely love Lara. I know this book will be extremely helpful to you, and I personally can't wait to read it for myself! (And yes, I'm going to be talking about this book a lot, because I'm really excited about it! There will even be a place in the sidebar where you can click to pre-order.) 

Do yourself a favor and pre-order the book (pre-orders are really helpful to both authors and publishers), get the bonus goodies, and prepare to be changed and to learn! 

 

 

Yarn Along No. 58 and a Medical Update (Oh, joy!)

books, health, knitting, yarn alongEmily DeArdo1 Comment

The kerchief continues! The nice thing is that I'm finally getting used to working with linen, and I really like it. I think this is going to be a great finished product. I also have the blocking mats and pins that I'll need to finish this project, even though that's a ways off in the future--I wanted to be prepared! I've never blocked anything before, but fortunately Hannah has some great advice on finishing linen pieces.   

So here's this week's progress. I'm getting near the end of the first ball of yarn, and there are three, total, for this project. So even though it doesn't seem like it, I am making progress! 

 

 

Ravelry notes here. (The pictures here are where you can really see the progress.) The book is Crossing to Safety, by Wallace Stegner. I've heard good things about it, but I've never read it--so I decided to fix that! I'm enjoying it so far. 

So, on to the Medical Update. 

As you may remember, I've been having some skin cancer issues. I actually really hate it call it that because it's so not cancer, in my book. I mean, it's stuff we're removing with local anesthesia and it's so easy. It's not cancer, to me. But technically, it is. So, I suppose for our purposes I'll be technically correct. 

(And no, this isn't because I'm fair, and I just didn't wear sunscreen. I've had some people react like that when they see the scar on my forehead from my last Mohs surgery. I then have to tell them that, no, it's not because I was negligent. Anyway, all those details are in the link in the above paragraph.)

So! There are four spots that we wanted to deal with--three on my head, and one on my chest. The three on my head and divided into two areas--one on my forehead, and two on my scalp. The forehead, chest, and first scalp one have been dealt with. But the last one is on the back of my scalp, it's rather large, and my dermatologist wanted a plastic surgeon to "close" it. 

I met with the plastic surgeon yesterday. He is very nice, very smart, and my kind of doctor. The easiest thing to do would be to do a skin graft, like the one I have on my right arm. But that also means that you have a bald spot on your head. So we're not doing that option. We're doing something called a scalp rotation flap, which basically means we're going to move part of my scalp to cover the surgical site, so that I have hair there! I'm not really sure of all the ins and outs of the procedure, technically, and I'm sure you don't want to know. :-P The end result is much more cosmetically pleasing, and, honestly, for me, it's probably easier. Skin grafts involve taking skin from other places on my body, and that means you have two surgical sites you have to deal with. That's not fun. So I support the doctor's plan. 

Because of my medical history, this is going to be done at a local hospital (the same one where I had my cochlear implant surgery, so I'm familiar with them, and they have records about me already!). That way, my surgeon can either discharge me the same day, or, if he needs to, he can keep me overnight. I like this plan a lot, because I want to make sure that any issues are dealt with appropriately, and in a real hospital setting (as opposed to an outpatient surgical center), my people have all the things they need to take care of me, should the need arise. I like that. It makes me happier. 

The process is in two parts: my dermatologist will remove the actual cancer, and my plastic surgeon will close/reconstruct it. Thus, the two of them have to coordinate their schedules to make sure we can do this in a timely manner--meaning, in May, and in a way that doesn't leave me with an open spot on my head for days on end while we wait for a surgical slot to open up. So by the end of this week, I should have dates and times and all that good stuff. 

Being me is never boring. 

 

Making Things Happen 2017: One Month Later

current projects, goal setting, Making Things Happen, writingEmily DeArdoComment
photo by the amazing Amy Nicole Cherry

photo by the amazing Amy Nicole Cherry

So it's been a month since the Making Things Happen Conference began in Chapel Hill. 

And I can happily say that I've spent this past month doing things that matter--intentionally. 

Here's some of the things I've been doing: 

  • Daily Bible Study with the She Reads Truth app. Every morning, I do morning prayer, morning offering, and this. On the rare days I don't start with this combination, it is not a good day! I've even gone father in this area by  adding a small segment of Bible time in the afternoon, too; reading a chapter of an Old Testament book, and starting to read the Gospels again. It's quicker--maybe five minutes?--but it's a good check in. I'm being much more intentional about prayer, and starting my day with it, in various forms. 

  • Cleaned out my office closet from top to bottom! Yay!!!!! There are three areas of my house that are crying out for organization, and this was the first one I tackled. So much trash, so many instances of What the heck is this and why do I still have it?!?!? later, I have a clean closet, and a much cleaner office, too.
     
  • I've read through my ebook and made the first revisions. Huge step forward there. Now I know what I have to do to get it ready for some beta readers and I can make an action list of items to complete there. 
     
  • I did a lot of blog research and reading. I read a series on search engine optimization and I finished reading and implementing the ideas from a blog how-to series about using Pinterest and making blog upgrades. Maybe you've noticed, maybe you haven't. Most of it's been very subtle. :) It's part of an ongoing series about better blogging that I'm working through. One thing I really want to do is be a better blogger, so this research and workshops are things I've been needing to do, but felt so overwhelmed at the idea of doing all the things. But by reading one article, or implementing one change, every day--growth! Things get done. 

For the first time, I think ever, in the few years I've been doing Power sheets, I checked off all my monthly goals!

I'm deeply realizing that little by little is powerful.

Good things grow with that little by little, concentrated effort. 

 

When I sat down to do my April Powersheets, I read through all my conference notes, my goals, and the past months work I'd done so far this year, and I decided to be very deliberate in my goal setting--to choose to work slowly, to plant good seeds, and to let them unfurl in their time. Writing this actually makes me realize how much more I did than I thought I'd done since I came back, and that makes me feel fabulous!!

I am so excited to do my May Powersheets next week. In fact, I might even do them early. 

Has every day been a perfectly cultivated day? No! (haha.) But that's not what matters. What matters is that forward progress and growth. Not minute-by-minute perfection. And that's where I'm making strides. 

Yarn Along No. 57: Continuing the Kerchief

yarn along, knitting, booksEmily DeArdo2 Comments

Continuing with the kerchief. I'm really enjoying this project, which is good, because I can't rush through it--the variation in the pattern with every row means I can only do about 3-4 rows before I stop. I really don't want to mess this guy up! 

You can see--sort of--the texture that's going on here. It'll be more evident after it's blocked, I think, but that's a long, long way in the future! 

 

 

The book this week is sort of unorthodox. :) But I love to actually read cookbooks. I have a few where I only make two or so recipes from them, but I keep them because I just love to read the stories and recipes. Yes, I'm weird. 

Anyway, my friend Mary got me The Cardamon Trail for my birthday--the author, Chetna Makan, was a contestant on The Great British Bake Off, and she got to the semi-finals (I think) in her season. She's from India and moved to the UK about ten years ago, so all her "bakes" (as they call the items the contestants make on the show) featured unusual flavor combinations that called to mind her Indian background and heritage. And man, they all looked yummy! So Mary gifted me Chetna's first cookbook and it's SO gorgeous. I can't wait to dive into it! 

Ravelry notes for my project are here

 

 

Easter notes

Catholicism, books, writingEmily DeArdo2 Comments

Happy Easter Octave! Yup, that's right--Easter, like Christmas, has an octave. We are going to celebrate intensely for at least eight days. So get out the party hats. Eat the chocolate. He is Risen!

So just a few notes from around here, vis-a-vis Holy Week and other things that Happened on My Week Off: 

  • There is something about Holy Hour that is just so calming. No matter how I go into it, once I've spent any amount of time in front of the monstrance/tabernacle, I just feel soothed. This Holy Week was a little crazier than usual, due to getting spots removed from my skin, and my basement flooding over the weekend, so workmen in and out to fix that....but I did get my Holy Week adoration period on Wednesday. Whew. I needed it. Felt a lot better after that. :) 
     
  • Claire in Outlander talks about this: when she's before the Blessed Sacrament in the first book, praying for Jamie, she goes to leave, and a monk is coming in (you can't leave the Sacrament alone during perpetual adoration). She says that she was alone, and the monk said, were you? Claire thought about it. No, she wasn't alone. It's like that. (It's at the end of the first book--don't have it to hand for the references at the moment.)
     
  • (And yes, I will be doing a post about Outlander and Catholicism later this month!)
     
  • Holy Thursday is probably my favorite Mass of the year. It's just gorgeous, we get to chant the Pange Lingua, which I've always loved, and which was written by a Dominican (St. Thomas Aquinas). If you haven't heard it, "educate yourself!" Really. Sublimity. 
  • There's a solemn procession to the Altar of Repose, and then silent adoration until midnight. This year, you could've heard a pin drop during adoration. Seriously, when I put my rosary back in its plastic case, it sounded loud (and I was being careful!). It's indescribable, really, but just so heavy with solemnity and prayer. Love it. 
     
  • My favorite part of Good Friday is the veneration of the cross. I know some people think it's weird. But getting to kiss the cross (or bow/genuflect to it, whatever you choose to do) is such a small thing, but it feels so significant. Here's some more about it, if you're curious.
     
  • The Vigil, on Saturday night, is always happy, because we welcome new members into the church. But it's also sort of nerve-wracking because: CANDLES. FIRE. Small children! This year the woman in front of me had a Big Issue--the paper wax-catcher thing around the candle actually caught fire! Yikes! Fortunately she was able to put it out before the pew caught on fire. :) 

How was your Holy Week and Easter? Do you or your family do anything special? 

 

Yarn Along No. 56: New project!

books, yarn along, knittingEmily DeArdoComment

It seems like a pattern--every time I do a new project, I have to start it three times. And the third time, it holds. 

Such was the case with my newest project, the Supermoon Kerchief. And let me tell you, ripping it all out twice was really, really irritating! But I think I have success! 

 

This project is knit with linen yarn,  and it's almost a lace pattern--the varying stitch pattern gives some really nice texture (which makes sense, since the book the pattern is from is called Texture.) This is the first project I'll have to block, so I'm also sort of nervous about that, but I'll worry about that later! 

I'm using Quince and Co. Sparrow yarn in Venice, and Knitpicks circular needles, size 4. Ravelry notes here

Since it's Passiontide, I'm trying to be more overtly religious in my reading. So these two are on the pile for this week: Anima Christi, and Death on a Friday Afternoon. 

 

Transplant side effects: Skin Cancer

health, transplantEmily DeArdoComment

I generally don't worry about statistics. 

Before transplant, I caught bugs that very few people caught. Non-infectious Tb? 4% of the CF population gets that. The bug that almost killed me in college? One other person in the world. Seriously. Not kidding. At least, documented, one other person

Post-transplant, my stats are flipped. I'm still in the small percentages, but it's good. I'm one of the 55% of women who made it to five years post-transplant. There isn't even data for 10 year survival rates on the UNOS (United Network for Organ Sharing) website--and I'm looking at hitting 12 years in July. 

So when my transplant coordinator, way back in that first July, talked about skin cancer and sun protection, I just sort of nodded. Our ("our" being transplant recipients here) risk of getting skin cancer is 10x higher than the general population. But, I've always been really good about sun protection. I've burned maybe three times in my life. I keep lots of sunscreen around. I seek shade. I go to the dermatologist every six months to get checked out. I am fair, but I'm also Italian, so that probably helps a little bit--but I am generally quite protective of my skin. I'm very familiar with SPF and its iterations in products. 

But. All that being said--eventually, the statistics might catch up with you. 

And so it was that, when I visited the dermatologist last week for my yearly skin exam (I see her more often than that, but this was the annual full body check), she biopsied three suspicious spots. 

And all three of them came back as types of skin cancer. Squamous Cell Carcinoma, (SCC) to be exact. 

So tomorrow I'm having mohs surgery to have these spots removed. We're not doing all three at one go; we're breaking it up into two sessions, one this week, and one next. Mohs surgery involves the surgeon (which my dermatologist is) taking very very very thin slices of skin, examining them under a microscope, and checking for cancer cells. She removes these layers of skin until the microscope shows no more cancer. And voila! No more cancer! So I don't even want to call it cancer, because seriously, this is like, minor leagues. I go in, I get some skin cut off, and we move on. Easy. 

Now, that being said, SCC can be fatal. 8,000 people die of it in the U.S. every year. And of course now I even have to be more careful about sun protection. All my v-neck t-shirts? Gone. I'm going to be adding to my hat collection. There are going to be multiple SPF products in my purse at all times. 

But I can get this fixed and keep it in check with regular dermatologist appointments, and possibly some immunosuppression tweaking. Because that's the big part of the issue. 

Some of the meds I'm on  make the skin photosensitive--really sensitive to light, and can cause it to burn much faster than a normal person's. Hence, the good sun protection strategies I had in place. 

But the immunosuppression drugs also keep the immune system from functioning properly, as we know. And that includes hampering its ability to kill potential cancer cells. 

I've gotten rid of one med that made my skin photosensitive--good! And now we're trying to see what we can do with the immunosuppression. We might not be able to do much, because there's not a wealth of pharmaceutical products we can choose from, here. But we'll see what can happen. Obviously, we want to keep my lungs in tact! And if push comes to shove, that's what I'm choosing. I can wear more sun screen and have my skin checked more often, but it's really hard to find a new pair of lungs, as we know. 

I'm also using this post to implore you to protect your skin, especially if you're fair like I am. Seriously. I know I'm a a much higher risk for these things than the general population, but skin cancer, in general, is skyrocketing in the U.S. Tans are not cool, people. Don't go to tanning beds. Don't "lay out" for hours to get toasty brown. That's not a good look.

  • Wear hats (big sun hats when you're at the beach--baseball caps don't cut it. If you do wear a baseball cap, put sunscreen on your ears!).
  • Wear sunscreen all the time. You can get sunburned on a cloudy day. 
  • Get sunglasses with UV protection in the lenses.
  • If you really need the extra protection, do what I do and get face cream with SPF in it. (This is my favorite. And if you get the big one, it will last you almost a year. Seriously. Mine has. So it works out, budget-wise, because it's cheaper than the drug store bottles of moisturizer that you keep buying. And it's very hard to find SPF 30 in a moisturizer!) And it's worth it to get SPF protection anyway, even if you just want to minimize/delay signs of aging.There's also Clinique City Block.
  •  Fresh's Sugar Lip treatments are what I wear during the day now instead of lipstick, because SPF 15! I really don't want to get part of my lip cut off, guys. And neither do you, I bet. Or grab a regular lip balm with SPF in it. Those aren't hard to find. Foundations and BB/CC creams also have SPF in them. (Bobbi Brown, Supergoop, and Smashbox are three brands to check out.) 
  • This is a revelation to me--hand cream with SPF 40. Seriously? Awesome. 
  • And finally, get clothes--or at the very least, swimwear--with UPF, which is like SPF for clothes. I started wearing one of these last year, and I'm getting another one for our trip to the beach this year. Yes, I can go to the beach, and I'm going to be there with an umbrella, lots of sunscreen, this coverup, and hats! Other companies that have UPF items include Lands End and Duluth Trading Company. It's becoming more and more common, thankfully. 

Anything you do to protect your skin is better than nothing. So even if you're not nearly as high risk as I am, do yourself a favor and learn how to protect your skin--and do it. Be smart. 

 

Growing through the dirt--Making Things Happen Conference 2017

goal setting, travel, Making Things HappenEmily DeArdo4 Comments

This isn't just a normal hallway. 

Off this hallway, big things happened. 

Weeds were pulled. Seeds planted. Connections made. 

Last week I had the incredible privilege of attending the Making Things Happen conference. It's a hard conference to explain. Essentially, you could say it's about goal setting. But it's about more than that--it's about living the life that you want to live, about being in touch with your purpose and getting rid of fears, lies, assumptions, and other muck that's holding you back from pursuing dreams and the fullest life. 

These dreams don't have to be big. They could be, in the world's reckoning, quite small. But to each person I was privileged to meet at this conference, it was about making their lives, and their small corners of the world, better

I went into the conference feeling discouraged. I didn't feel like I was ever going to meet my goals of getting the book published and meeting smaller, more personal goals. I felt like I had been planting seeds, but wasn't seeing results. 

"How would it feel if we got pregnant, and then had a baby the next day?" Lara Casey (the conference founder) asked at one point. It's absurd, but it's true. One of my big takeaways was that I wanted success to be easy. I didn't want to have to keep sending out proposals, keep exercising....keep whatever-ing. I wanted success now, measurable results NOW! And that's not how it goes. 

It's about God's timing. Not mine. Lara loves gardening, so her talks had lots of gardening metaphors. "Peonies grow through the dirt, and so do we" was one I really liked. 

It takes work for a seed to grow. And faith for a farmer or gardener to plant that seed and hope for a harvest. 

As part of "growing together", we had focus groups. The ladies in my focus group were amazing. We got down to the real, hard things and then started to build up from there. 

I met amazing, God-loving women who want to make good things happen, and that inspired me. I know that these women want to help me grow, just like I want to help them. When you're real with someone--really real, no holes barred, crying in front of them sharing fears real--for two days, you know that at the end of it, you're accepted and loved and supported. It's truly an amazing feeling to have that support. 

Growing little by little is powerful. The items on my action list are slowly being tended. I'm being very intentional in how I spend my days and my time. This time is all I get--I don't want to waste it. 

Another big take away for me? "We practice to get better!" That's one of the things I hate about exercise--I'm not good at it. But hearing this, even though it's sort of a duh truth, gave me the encouragement I needed. We do practice to get better. And often, I don't want to practice the stuff I'm not good at. But I have to, to see any growth. 

The Carolina Inn, where the conference was held. 

The Carolina Inn, where the conference was held. 

At the conference, one of the questions we journaled about was: what is your definition of success? Here's mine: 

Doing what God has created me to do with a joyful and contented heart.

So everyday, I'm going to sit down with my planner (which Emily L. so graciously gifted all of us!), my mug, and my PowerSheets, and make things happen. Especially things that will further what God has created me to do. 

The Work of Acceptance

books, essays, healthEmily DeArdoComment
Andrew Wyeth, "Christina's World" 

Andrew Wyeth, "Christina's World" 

A lot of people equate "acceptance" with "giving up." 

This is not true. 

I'm in a book club that's reading A Piece of the World and one of the discussion threads that keeps popping up is that the main character, Christina (who was a actual living, breathing person) is too "accepting" of her disability. She doesn't fight back, she doesn't try, she just gives up. 

Now, the book is about Andrew Wyeth's famous painting, Christina's World, and the woman behind it, Christina Olson, who is our narrator. We aren't sure what sort of illness she had, but it was a degenerative one that eventually took away the use of her legs and other parts of her body. 

In the novel, Christina is first fitted with braces to "fix" her legs. The braces are incredibly painful, causing her to bleed and bruise, and they don't help. She stops wearing them. Her parents want her to try a treatment at a hospital, but when she and her father get to the hospital, she refuses to enter. Later in her life, she tries one last time, but is told to "rest". 

But Christina doesn't pity herself; she goes on with life as usual. She doesn't want treatment because she doesn't think they'll work, and she doesn't see her body as something that is  wrong--she's just the way she is. 

Some people in the group, though, are so irritated that she doesn't try. But what is gained from constantly trying to change things, in pursuing futile treatments that may not help? Christina has decided that she doesn't want to keep trying things that are painful and unhelpful. That's her choice, and that's her call. But it doesn't mean she's just flopping over on a couch and saying, "I give up! I shall Lay Here On My Bed For the Rest of My Days!"  

All of us eventually die. All of us will, eventually, have our bodies betray us. Christina's mother says in the book that Christina is just the way God made her. And that's the way I feel, too, about my body. This is just how I am. Christina accepts it, and goes on with her life.  

Now, does that mean I don't try to fix things? Well, no. I wear glasses and got braces and I do love useful medical treatment that keeps me alive. :) But there are also things that I know I won't do, treatments I won't try, and bridges I won't cross, in the name of keeping me alive or "fixing" things.

Some Deaf people will not have cochlear implants. It's actually a big topic in the Deaf Community (or it was--not sure about now?). Do we try to "fix" a disability (being unable to hear), or do we see it as a disability at all? We know how I came down on that side of the question, but again, I wasn't born Deaf. And a CI is a bit different that a situation that really can't be fixed or cured or changed.

Have I given up? No! But I have accepted my body the way it is. I have accepted its limitations and I'm not willing to do things that may or may not "fix" me. 

This isn't giving up--it's just acceptance. And that takes work. It's hard to try to be even-keeled about things like maybe never having my own children. It's taken years of work. But without acceptance, I'd be constantly chasing some ideal of physical perfection that just isn't possible. I'd be wasting money and time. There are other things I'd rather do, honestly, than sit in another doctor's office. 

As Christina's body declined even further, she still tried her best to do her everyday things. To some, her world was very small, because she never lived anywhere but her small town in Maine, and even then, nowhere by her family's farmhouse. She lived with her family all her life. But by saying that her life was less than, or sad, or that she gave up--that denies her any agency in her life. It denies her hard work of acceptance and living her life on her terms. 

Does her life make other people uncomfortable? Well, probably. She didn't use a wheelchair so she dragged herself around, propelling herself by using her arms. This was probably quite...well, odd, for a lot of people. But too bad for them.

I remember when I needed insulin right after transplant, and a friend of mine said "ew!" when I injected myself at the dinner table, in my own house. "You don't have to look," I shot back.  Normally, if I went out to dinner and I was with people, I'd go into the bathroom and inject myself. But in my own house? Nope. Not happening. 

People used to complain about my CF treatments. "When are you going to be done with that?" Like the nebulizer was some sort of icky contraption, or a poisonous animal. "When I'm done."  I had a roommate once who didn't want my machines in the bedroom we shared; she wanted me to put them in the living room of our townhouse. I didn't want to be doing my treatments in front of total strangers, or getting lots of nosy questions about what these machines were and why I needed them. I wasn't some sort of sideshow exhibit. 

I don't need to make my life easier for other people. I need to make my life work for me. And so did Christina. 

 

 

 

 

Insurance/ACA/ Health Care Part III: Thoughts and Suggestions

politicsEmily DeArdoComment

So, in the meantime, what can we do about health care/insurance costs, and the like? Here's some suggestions: 

1) Realize that even in a hospital, you are the consumer. If you don't want a certain test run, you don't have to have it run! If you don't want to go to a certain hospital, you don't have to go there! A few weeks ago I had to tell ambulance guys (I'm fine, btw) to take me to Children's instead of the nearest hospital. They looked at me oddly. "It's because of my transplant," I said. When we got to Children's, and one of the nurses recognized me immediately, the EMT realized, Oh, yes, she knows what she's talking about! 

You do not have to do everything a doctor recommends. You really don't. I know, we don't want to be difficult. We assume the doctors know what they're talking about. And yes, most of the time, they do! But not always

(Caveat here: If you don't know anything about your condition, then I don't recommend this pathway. It's only after, say, 34 years of messing with my body that I know what most tests are being run for, and what their purposes are. If I don't know, I ask. If a doctor suggests a test to me that I don't think is necessary, we have a "conversation". Or if it's contraindicated for me, it doesn't happen. Don't be in the ER and Googling random tests. That's annoying.) 

2) Know Your Body. Know what you're taking, what you're allergic to, what tests you may not be able to have. Use the Health app on your iPhone! Why know all this? Because hospitals and doctors don't always know. They don't check the chart all the time! You must advocate for yourself. That's not really a suggestion. It's something you have to do. 

I was at a Big Adult Hospital once and the nurses would come in and say things like, "We're going to do an MRI." Me: "No, you're not. I have a magnet in my head. Contraindicated." 

"We're going to give you a PICC line." "No you're not. There's no more spots for them." 

Etc. Had they read my chart? No idea. But I--and my parents, who took turns being with me--knew enough about me to say, "Nope. This isn't happening." 

If I hadn't known, or hadn't been able to speak up, then things would've been done that would've been reallllly bad. 

3) Almost all--if not all--hospitals have financial aid departments. Call them. Email them. Fax them. Whatever. Talk to them. I currently have a stack of bills from the resort next to me. I will fill out the application for financial aid, and I will send these to the financial aid office at Children's, and once they see that my "paycheck is a disgrace to paychecks", I will probably not have to pay anything, or a severely reduced amount. 

Is this a pain? Yes. Have my parents and I dealt with many, many financial officers and insurance people? Yes. Does it take time? Yes. BUT IT CAN BE DONE. DO IT. It's worth it.

4) Do not mistake "insurance" for "health care." Not the same! 

5) It is important that people with pre-existing conditions, that need health insurance, can get it. It is important to remove the work connection to insurance. But one of the big parts of the ACA is the "insurance marketplace" idea, and the idea that the care would be affordable, because you could choose what worked for you and your budget. 

But right now, there is no "marketplace" if an entire state has only one insurance company from which to choose. That completely defeats the purpose of a free market, in which competition is what is needed to keep prices low and provide consumer choice. If the choices are Insurance Company X, and Medicare/ Medicaid, that's not a choice for the average bear. 

Different people have different insurance needs. I use health care incredibly often. My brother is as healthy as a horse and has used an ER once in his entire life. He and I, obviously, do not need the same insurance plans! Thus, when I worked, I chose the most expensive insurance plan. My brother could choose the cheapest one and be OK with that. 

Right now, I have one health insurance option. Thankfully, it covers the Big Things I need. But financially, it's a tough plan, given my co-pays and the premium is crazy.  But I don't have the choice of any other insurer, whereas before, I had three choices. This is a problem, no? Because I cannot make choices about my health care. I have to "choose" the only option available.

The ACA, like many things, might be "good in theory". But in practice, there are definitely things that need fixed, while still keeping key provisions of the law that allow people with complex medical needs to get what they need. 

 

Thoughts on Insurance and Health Care, Part II: The Government Side

politicsEmily DeArdo4 Comments

I worked for the state government for 10 years, in various capacities. Before that, I interned in my congressman's office. And in both places, I paid special attention to any health care stuff that was going on. The first budget I worked on in the Senate, I had the good fortune to meet an excellent lobbyist (yes, they exist) who fought to keep the state's Bureau for Children With Medical Handicaps (BCMH) funding alive in what was a very, very, very tight budget.

The State of Ohio has to have a balanced budget. We can't run a deficit. So we can't pass a budget that doesn't add up, and that means that, as great as many programs are, we can't keep them all if the funding isn't there. Fortunately, BCMH was saved, because BCMH works with many families with kids and adults with chronic diseases, like CF. We never had to use BCMH funds, but I know that they were, and are, extremely useful to families who need money to help pay for treatment, equipment, and care. It's a nice safety net and really makes a difference to a lot of families.  

(To me, this is an important part of the pro-life ethos: helping families and adults who have chronic conditions receive good care for said conditions. That's what BCMH does. And right now, in Ohio, they're talking about cutting it again, which irritates me, because it's a program that does a lot of good for small(ish) output. So, back to the crusading we go!)   

Now, like I said, Ohio has to have a balanced budget. The federal government does not.  Hence the "debt clock"    .  (There have been various efforts at a "balanced budget amendment" over the years. Hasn't happened yet.) But that doesn't mean that the government can just make stuff happen--poof! Magic! Being $19 trillion in debt is probably not the best economic policy. And when there isn't enough money, you run into issues like the one we currently have with Social Security--it's not going to be solvent forever. At some point, all the bills come due. 

If you work for a particular member of Congress or the state legislature, you get lots of phone calls, emails, and letters. Most of these involve wanting the government to do something--and that something usually involves money. Any time you hear the word "free" come out of a politician's mouth, you should laugh. NOTHING is free. Someone is always paying for it. Now, that someone might not be you. But someone is

"Free" health care. "Free" college. "Free" preschool. "Free" whatever whatever whatever. 

Someone, somewhere, is paying for that. Let's not debate the ins and outs of whether or not these people should, or types of taxation. Let's just all agree that somewhere, someone is paying for all the "free" things. "No such thing as a free lunch" also applies to everything else. 

*     *     *

One of the things that makes America different from other countries is federalism. (Federalism--the divide of power between state, local, and federal government.) That idea is enshrined in the Constitution and it's something that also makes life....hard, when it comes to spending. 

There is always an underlying argument about the powers of the federal government and what the federal government should do. Really strict interpreters of the Constitution say that the federal government should only do the things listed in Article I, section 8, which includes things like: 

  • Maintaining "post roads"--we could probably say road maintenance today. Highways, especially, since they're interstate. 
  • Borrowing money
  • Regulating foreign trade
  • Creating and regulating the lower court system  (as in, everything other than SCOTUS). 
  • Declare war, and maintain/provide for the armed forces--there is quite a bit about this in section 8.

(Like it or not, national defense has always been something the federal government has been charged to do. It's a big part of the Constitution. "Provide for the common defense" is part of the preamble. We can argue about what "maintain" means, in concrete terms. But it IS one of the few direct things the government is charged with doing. Ergo, military spending belongs in the federal budget.) 

Now, we can argue all day about what the government should provide for its people--and there are some things the government, at the federal level, just does better. The military comes immediately to mind, as does anything to do with foreign trade and foreign governments. We need a Secretary of State and a Secretary of Defense and a  Secretary of the Treasury. Those are important Cabinet positions that do important work. 

If we, as citizens, want the government to provide something, we have to determine what we would like them to cut in order to pay for something else.  We cannot have everything, it just doesn't work. Everyone who's ever had to balance a checkbook knows this--or any kid who got an allowance. You have $10. You can buy the books, or the My Little Ponies. But not both. (Childhood examples, right there.) 

So, if we want a minimum floor of health care that the government provides--what are we willing to lose? Sesame Street funding? The calls for universal Pre-K? Head Start? Highway maintenance? Disease research? National parks? Foreign aid? Humanities spending? Public health stuff? 

No one wants to be the politician to say "we cannot afford everything", because that politician will lose in his next election. But it's true. We really cannot afford everything. It's just not possible. 

*     *     *

What if we revamped the ACA so it was more like a safety net of health care? 

And by "safety net of health care", we could say: vision. Dental. Basic medical care: primary care guys, basic surgery, urgent care/ER stuff. Maybe specialists and certain types of special care (chemo? etc.) Not Viagra. (Sorry, guys.) Not birth control. (Sorry, ladies!) Not cosmetic surgery, etc. But things that actually are vital to health. To keeping you alive, or fix big issues, like eyesight or hearing, that can really improve people's lives.  

Again, this would be nice. The question is: how do we administer it? How do we make it happen? How do we codify it? (Get it into law) And above all, how do we make it effective, so people aren't waiting years and years to get things they need?  

The easiest thing, in my mind, would be to just call a spade a spade and say it's a tax. It just is, like Social Security. You just pay it. It gets taken out of your paycheck. Stop it with this whole "you have to buy insurance but it's not a tax" thing. It is. It's a tax. Just call it what it is. Say that we're going to have a certain bedrock level of care that's going to be low-cost because everyone is paying for it. 

We do have to get rid of the connection between employment and health insurance. And we have to get rid of the inability for people with actual health problems to get said health insurance, because we're the ones who need it. We also need to fix Social Security Disability so that states cannot deprive certain populations in their states from being eligible for SSDI. 

But all of this is insanely complicated to codify, especially since we have 50 different state laws regarding health insurance mandates and what needs to be covered. The national law generally overrides state law--so while Colorado has "legal" marijuana, technically that's against federal law, and if the feds wanted, they could prosecute the state of Colorado. But, for example, Ohio can ask insurance companies to cover blood sugar monitors for diabetics, but Illinois could say, "nah, we're not going to require that." 

So really, in my mind, we need to get rid of the employment thing first, and cover people who need covered. That has to happen. Then we can talk about what else we want. 

Because American health care--as in, actual care--is quite good. I'm alive because of it. We do lots of crazy things here that are awesome, groundbreaking things. 

What is not awesome is the insurance system. It is, to be kind, a bit insane. 

"Politics is choosing," some one in some political movie said. (I think it was The American President.) We have to choose. What do we want our government to do? What is our government's job? And then go from there--but realizing that nothing is free, and that if we want something, we have to be willing to give up something else.  What are we willing to give up? 

 

 

Yarn Along 55: When Following the Pattern Goes Awry

books, knitting, yarn alongEmily DeArdo7 Comments

When you're knitting, usually, if you follow the pattern, you'll get something like the picture in the book. 

Unless the pattern is really, really off, as such was the case with this week's project. 

After I finished my scarf, I was just totally in love with knitting. I began to plan and plot for my next several projects, one of them being this envelope bag from the Chicks With Sticks Guide to Knitting

I followed the pattern precisely. I got the types of yarn indicated. I used the right size needles--which meant I had to get them, because I didn't have size 15s, but hey, I needed them for the next project too. 

And it turned out...oddly. 

It's supposed to be tiny. Like, glasses size case tiny. This is NOT tiny. It's like 13 inches! Now, I didn't felt it--because apparently you're only supposed to felt with 100% wool, and that's not what this wool was. (That wasn't specified in the instructions, either. Grrr.)  Ravelry notes here. 

However, even though it's enormous, I did like knitting this, and I liked whipstitching the edges of the bag, because one of my hangups had been "sewing and knitting? Whaaa?" Now I see how it works. 

I'm using the bag to hold my knitting notions: extra tapestry needles, my tape measure, needle gauge, stuff like that. I will sew a button on this guy at some point. And I do love the colors I chose. 

My work in progress is this guy: a basic washcloth. But different! 

I know--books, not magazines--but I love the dark yarn against the pale cover!

I know--books, not magazines--but I love the dark yarn against the pale cover!

 

It's done with a cotton/linen yarn. The next "real" project in my queue is a linen kerchief, and knitting with linen yarn is really different. (I did a few rows of the kerchief pattern with the linen yarn--Quince Sparrow, Venice colorway.) So I decided, before I go to work on the "real" project, let's use this linen/cotton blend and make up a washcloth, to get a feel for linen, even in a blend. 

Linen tends to really slip off needles, I learned (quickly!). But the stitch definition is amazing. You can't really see here, but even in a blend, the linen makes a difference.  It's going to be great in the kerchief project, which is all about texture.  

(Colorway for washcloth is Planetarium, Knitpick's Cotlin.)

As for real books, I have Adam Bede and The Mill on the Floss to read next. 

 

 

Thoughts on Health Care/ACA/Etc Part One: Some background

healthEmily DeArdo1 Comment

I realize that's not the sexiest title, but I thought that it might be worth sharing some of my thoughts on health care, as someone who both uses the health care system extensively, and someone who worked in government. And since, if I tried to make this one post, the post would be approximately the length of Moby-Dick (and about as fun to read), it's going to be several posts. 

Today: My background in health care and using the American Health Care System 

Tomorrow: Working in Government and Seeing How Things Work (ie, nothing is free!) 

Day Three: Suggestions

I wasn't diagnosed with CF at birth. I was diagnosed when I was 11. However, I had epilepsy before that, and my first hospital admit was at the age of 9 months, so I've been using the health care system intimately for a long time. I always had insurance under my dad's work plan. Sometimes the plan would change and we'd have to deal with companies that weren't quite as good as others (Cigna, I'm looking at you), but I always had insurance. And it was insurance that worked, meaning it paid for the big things, like a two-week ICU stint my sophomore year of college, and lots of not-so-big things, like IV antibiotics at home. 

 I always knew that I had to have a job that would provide good health insurance. Salary wasn't as much of a priority as that was. Working for the government was ideal, because, while the pay was less, the benefits were good. I had three choices of health insurance plans. I chose the most expensive because I knew that my doctors at Children's liked them (meaning, they didn't have to argue with them too much), and they were what I'd had with my parents, so we were familiar with their coverage and co-pays and all that jazz. We knew how they worked. Like I said, this was the most expensive plan and took the most out of my paycheck, but that was secondary to having insurance that was good and would cover things, like the transplant I knew I was going to have soon.  

At that point--2004--I knew I had to have a job, because I couldn't stay on my parents' plan. Back then, you could only stay on your parents' plan through college. The details are sort of fuzzy now, but I think there was a way I could've stayed on their plan, or something, because of all my issues. 

The other option for health care coverage, if I didn't get a job or didn't want to get a job, was Social Security Disability Insurance (SSDI), but I never even considered that, because 1) I wanted to work, 2) I didn't consider myself disabled. Yeah, OK, so my lungs were crap and I spent a lot of time in hospitals. But I could work. I had a brain that worked, I was intelligent, and I was going to use my fancy degree, dang it! I never considered not working, or not going to college.  

So, I had a job, I had health insurance. My  plan paid for my transplant--the surgery, the hospitalization after, the rehab, the drugs. It was good. It did what it was supposed to do, in short. I went back to work and continued to have health coverage. And I still, today, have health coverage (although not as good). 

Obviously, I am a person who requires lots of health care stuff. I require multiple medications to survive (although not as many as I did pre-transplant. Yay!). I wear contacts. I have a cochlear implant. I see a pulmonologist, a cardiologist, an ENT, a dermatologist (because my skin cancer risk is about 10X as high as the general population), a dentist, and an optometrist. In other times during my life, I've seen a rheumatologist, a neurologist, a plastic surgeon, doctors who treat burns, a dental surgeon, orthopedists (two broken bones), and a general surgeon (for when my port was implanted). It's easier to list the departments I haven't been seen in at Children's than the ones I've seen.  I am expensive to keep alive. 

And even with insurance, my family and I have to pay for things. A cochlear implant upgrade? $10,000. Visits to the infusion lab at Children's for blood draws? A few hundred. Pulmonary Function Tests, chest X-rays, CT scans, and EKGs? Yet more money. 

Now, that's the insurance side of it. How about the waiting side of it? Do I ever have to wait for care?

No. 

That's the quick answer. The longer answer is, sort of. My ENT, for example, works at various hospitals. When I need sinus surgery, we do it at Children's because they are so familiar with me, and that's where my lung transplant team is. So if I need surgery, I might have to "wait" if he doesn't have an immediate open slot on a Children's Surgery Day.  Even then, though, it's maybe a month or two month wait, and that's because my sinus surgeries are generally not urgent deals. They need done , but it's not like I'll die if they're not done quickly. 

I have never had to wait for any sort of testing or treatment. That's excellent. And it's almost always been like that, with any insurance I've had throughout my life. 

I obviously have a stake in how health care is "done" in this country. However, that doesn't mean that I fell to my knees in gratitude when the ACA was passed. But that's for tomorrow, when we talk about what I learned when it comes to government and health care.