Catching Curveballs: How to Live to An Abnormal Life

When life throws you curveballs--how to live and abnormal life @emily_m_deardo

“Normal is just a setting on the dryer.”

We’ve all heard that one, right? While it may be catchy, and even comforting, it’s not really helpful when your life goes from normal to really abnormal, especially if it happens without warning. A phone call, a doctor’s appointment–these things take only seconds to rearrange our lives.

Over the past few months, I’ve seen a lot of dear people’s lives go off kilter in the medical sense of “off kilter”. So I thought I’d share some of my thoughts on living a life of abnormality.

 

life throwing you curveballs? Here's how to deal with it @emily_m_deardo

“Normal? What does anyone in this family know about normal?”

1. You have to embrace the abnormality as the new normal. This is the most important and perhaps the hardest thing. No, most people’s lives do not involve random Sunday morning runs to the ER, or IV malfunctions at two a.m. But guess what. Yours does (or whatever your circumstances dictate).The sooner this becomes “no big deal” to you and your family, the better. This is especially important if you have kids. The kids will react much better if you are calm and treat what is happening like it’s the most normal thing in the world. Now, sometimes, this isn’t possible. But regular hospitalizations, tests, ER visits, and the like are much less scary if they feel routine.

 

2.Remain calm (at least in front of medical personnel) when you hear that your plans are about to radically change. (That doesn’t mean you can’t get upset about it. I’ve had my share of crying jags in empty exam rooms about hospitalizations I didn’t want.) However, if you’re going to get upset, do it fast, ugly-cry, and then move on.

Think about what you need to do immediately. What do you or your child need right now–medications? A favorite toy? Does your cell phone need charged? Are there people that you have to meet with later today, and now that’s going to be impossible? Write a list, call people–whatever you particularly need to do right away, do it.

(I tend to think the following: I need my CI battery and charger. I need my glasses, contact case, and solution. My meds are mostly in the hospital formulary, but some of them aren’t, so I need the bag of meds brought in so I can give the nurses what I need to take and they can put it in my med drawer. I will need the charger for my phone and iPad, which is plugged into my computer, and I’ll need the wall charger, which is in the other bag. Etc.)

When I first heard about transplant being an option for me, I had to admit, I was FREAKED. I had no idea this was actually something that I had to think about now. Thinking about the immediate things I needed to do with this information was much less scary than letting my imagination run wild.

 

3. Be upfront with important people in your life. When I worked, I told my bosses, this is my medical situation. There are times when I may be out of the office for long stretches. I cannot control when this happens. I will update you with information when I have it. This means that there have been calls from ERs to my bosses. If you’re a parent who has a child who’s sick, and you will be missing a lot of work, I suggest you talk to your bosses and get really familiar with your leave options.

 

4. Talk to Patient Accounts at the hospital. Really talk to them. They are your friends! Use the resources that are available to you. If there’s a social worker handy, it can’t hurt to talk to said person and see what’s there for you and your family to use.

 

5. For parents: treat your children as normally as possible. I really, really, REALLY cannot stress this enough. Do not give them the mindset that because they have health problems, they are “super special” and don’t have to do homework or are entitled to things that other kids don’t get. They may need accommodation. That’s one thing. And they may get more toys, etc. because of their hospitalizations. OK. But telling them they don’t need to do homework or whatever because they’re “in the hospital” or “sick” or whatever is not helpful and not good for their development.

I always had to do homework. When an IV bled out at 2 am the night before my Algebra II final, I didn’t get to skip the final. I took it later that same day. If I’d have been admitted to the hospital, I’d have taken the final when I could, or we would’ve made arrangements. I never got out of schoolwork.

 

5. Be prepared, but don’t be Eeyore: Obviously, expecting that things can happen, and being prepared for them, is a mental help. But don’t be overly freaking out. Don’t think that everything is catastrophe, or feel like you cannot plan anything because who knows what is going to happen. There will be seasons of life where things need to be readjusted–holiday plans, vacations, etc. But there are also times when everything’s fine.  You have to ride it like you’re surfing. Do not let worries control your life, especially if you’re the parent. Your kids can sense this. Really. And it just makes them tense up and freak out because the parents are worrying about me so there must be something to worry about. For example: I knew that CF was fatal when I read about it in our World Book encyclopedia (ah, the 90s!). But my parents weren’t going around wailing and gnashing their teeth about my demise, so I figured, hey, I’ll think about this when I’m 30 or so.

If you’re a parent, try to do your freaking out when the kids aren’t around/awake. See point above. This doesn’t really go away because your kids get older. It’s hard to control yourself and console someone else.

 

6. As far as sharing on social media: let’s just say I was really glad I didn’t have Facebook in the years leading up to my transplant. There was no place–and there still is no place–for my parents to share photos of me in hospital rooms, in recovery, etc., because they do not have Facebook, or blogs.  If your child is old enough, talk to the child about sharing this private information on social media platforms. Some kids don’t care. Some kids, like me, care greatly. I did give dad permission to update my friends with regular emails when I had my transplant, but I would not have wanted him to attach any photos.

There are few things you can control, as a patient. You may not want these moments splashed all over Facebook or twitter. But talk to your family/your child about these things. Get everyone on the same page.

 

7. Do not worry about the things that MAY or MIGHT happen in five, ten, fifteen years. This is a waste of brain space and a huge source of stress. Think about what is currently happening. Focus on the immediate moment. What needs to get better? What are people trying to find out?

 

8. This probably should have been first, but: pray. Really. Get in touch with your pastor/priest/rabbi/whatever. I found it immensely comforting to talk to certain hospital chaplains that I really liked (Fr. Mark! More on him later!). God is in control, guys. He really, really is. Remind yourself of that frequently. Know that I still have to remind myself of this often. 🙂 I don’t think it ever stops, really, the need for Him to take care of all this. But if you don’t pray—start. It helps.

 

What do you do when life goes off the rails? How do you adjust? Do these suggestions help? Let me know in the comments.

 

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Seven Quick Takes No. 75

It's Friday, so that means Seven Quick Takes! @emily_m_deardo

I.

People, this is a thing:

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So it was yesterday, but next week I’m going to have a post up on Books You Need To Read, so please check back for that! I’m really looking forward to sharing some of my favorite books with you (and yes, Jane tops the list. Let’s be real, people.)

II.

 This week on my other page I wrote about How I write  and A Tour of my Office.  Let me know what you think? (And follow the page there, too, please? This ends our commercial. :-p) Next week I’m writing about journaling and research. I’ve been journaling since I was 12 years old, so I have a few things to say about it!

III.

The fitness Regimen IS BACK! I worked out three days in a row this week, and I’m heading to the gym today. My “off” days are Thursday and Sunday. I’ve also brought back the weight training. AND I’m pondering kicking off a Whole 30 in May. Have I gone crazy? Maybe?

But no, I really need to focus on this stuff now. I fell off the fitness wagon in March, but now it’s time to get back on, entirely. I began adding back some activity toward the end of March/beginning of April, but I want to have good numbers when I go into clinic again in June for my ten year yearly.

IV.

(Ten years? For real? REALLY? I’m going to write more about this later, but holy cow: time flies when you’re having fun.)

V.

Planning for the Charleston Trip is in full swing–Mom and I have narrowed down a huge list of restaurants in the city to a manageable list, and we want to visit the plantation where parts of North and South and The Notebook were shot. MY ten year anniversary, coincidentally, will occur when we’re down there, and when I’m attending Edel! Whee!

VI.

It was chilly here this week–we had frost this morning and I actually had to turn the heat back on. So we’ve gone from like 80 to….34? Crazy weather is always with us. But hey, there’s no snow, unlike Pittsburgh, which had some yesterday during the Pirates game. Brrrr!

VII.

I started the Great Jane Re-Read Early this year–I just re-read Sense and Sensibility. I’ve got the Annotated Northanger Abbey here, so that’s next–going a bit out of order. 🙂

Seven Quick Takes Vol. 74

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I.

Welcome to a sunny spring day. 🙂 I just want to curl up in the puddles of sunshine like a cat. However, I will be sure to get out today and enjoy this weather!

II.

This week I’ve been really watching what I eat and weighing myself every morning. I know that does not sound like a load of fun. But for me it’s good to keep track on the numbers so I can adjust my plans when necessary. I want to lose a substantial (read: more than two pounds) amount of weight before my next clinic appointment in early June, so that means being on top of these things. I should probably do a Whole 30. I’ve been thinking about it for a long time and I have the book upstairs, but….I keep saying “I love my coffee creamer!” (Which I do.)

The time has come, people, to just Do It. (Mayhap with modifications. Because me and dairy, we’re tight, and vitamin D/calcium are quite important for my bones given my CF history of malabsorption of vitamins. But I’ll ponder.)

I shall keep y’all updated.

III.

My new editorial calendar is all set up for the next few weeks, and I’m excited about this .

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Essentially, I’m working with Trello for my calendar. It’s a flow where I have my ideas column, then every step in between. This way I keep all my projects organized and I have a sense of what’s going where, when. It also means that this site and my author site (please follow!) will have regular, high-quality content being posted. That’s exciting!

Some of the topics coming up are: a tour of my office; confession 101; my writing process, and Jane Austen’s views on marriage.

IV.

It’s Donate Life month, y’all. As you know, I am a big supporter of organ donation, because without it, I’m not here. Really. I would’ve been dead before my twenty-fourth birthday. That’s pretty sobering stuff.

But because Suzanne, a woman in Minnesota, decided to be an organ donor, I am here, writing to you. 🙂

There are more than 123,000 people on the waiting list for an organ donor. That’s more than the amount of people that can fit inside Ohio Stadium during an OSU game. 21 people die each day waiting for an organ–when I received my lungs, that number was 18.

To find out more about organ donation, go here. And please consider being an organ donor. I’ve had an entire decade of life I would not have gotten otherwise, thanks to my donor.

V.

For your viewing enjoyment:

A

VI.

I’m reading Ivanhoe right now, and I’m more than 60% done with it. I have to ask–Why is it called Ivanhoe? Because he’s barely been involved at all. 

VII.

I’m teaching the CCD kids about the Ascension this week. Since we covered the Assumption last week, they should be OK with this. We’re also throwing in a dash of apostolic succession, because, why not?

Daybook No. 88

Don'tLetTheEveryDayRoutines

Outside my window/health stuff::

Lots of wet, wet snow. I had a doctor’s appointment this morning and Dad drove me. It took us almost an hour to go 12 miles. Sigh. But we made it on time and in tact, so that was good. (Dad gets a wee bit overprotective about me and snow. I love him for it.) Anyway, my PFTs are up two points, so that’s a good thing. We’re happy about that. Most of the visit was spent talking about the switch from my current insurance to the new insurance and how I may be without insurance for a period during this transition, which makes us slightly nervous, because MEDS. Like, Meds I need to Keep The Lungs Happy. Sigh. But we’ll work it out. I can get the meds….somewhere. I think. I hope!  There’s getting them and then there’s paying for them. Two separate things. But we’re working on it. Yes. We are.

Wearing::

Jeans, SmartWool socks (I LOVE these things), and a turquoise/teal sweater with a cute little bow details. I try to look cute but also utilitarian for clinic, because you have to take off clothes for the X-ray, and if they want anything else, you want to be fairly comfortable but presentable. (Sometimes I’ve had bronchs when I’ve been all prettied up for work, and those always suck, because you’re in nice clothes that then get all wrinkly because you have to take them off and put them in a bad. Sigh.)

Reading::

Re-reading Lara Casey’s Make it Happen, and just about done with Pope Benedict XVI’s Prayer .

Creativity::

Still working on the cowl and bookmarks. Yay! 🙂 And adding new sections to the BOOK.

Around the house::
The tree is finally down! I vacuumed the section of the rug that was under it but good, let me tell you. I have to do some more loads of dishes, because you know, I cooked last night, and that means more dishes than my dishwasher can handle.

Meals for the week::

Um, right now, I’ve got nothing. I had chicken piccata with roasted fennel last night, and that was good. Tonight might just be quick two bean chili. I need to make my list and go shopping tonight or tomorrow.

In the CD player::

The Original Broadway Cast of Parade. The best show I have ever done, period.

Final scene of Parade (I'm in the blue pinafore in the center).

Final scene of Parade (I’m in the blue pinafore in the center).

Bible reading::

I’m reading the letters of St. Peter this week and probably next week, and then it’s a study of Esther.

Seven Quick Takes No. 64

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I.

Happy Friday! This week was short, and also long. If that can happen. Monday was long because, seriously, when you can’t eat anything but jello, it’s a long day. Tuesday was short because you know, fun drugs. 🙂

II.

Monday was also long because of waiting for the OSU game. Normally I’m not a huge OSU fan–my parents didn’t grow up here, so we weren’t really into it–but when it’s the National Championship, you can get swept up in it. I’m glad they won. I’m not glad that they scheduled their celebration for the same weekend as the NHL All Star Weekend, which is also here in Columbus.

Seriously, this is my big beef with OSU sports. It’s college sports, but this town treats them like they’re the end-all and be-all of sporting events. All-Star weekend is a big deal, and we have to compete with freaking OSU again?

When my parents moved here from Pittsburgh, one of the things they didn’t understand was this OSU insanity mentality. My Dad is a Pitt alum, and the year Pitt won the National Championship, it was minor, because the city’s major league teams were winning things like the World Series and the Super Bowl. He couldn’t understand how a college team could garner so much press and devotion. And honestly, I still don’t understand it. I realize it’s “all we have”–but that’s not true anymore. We have two major league sports teams. They do not get nearly as much love as the Jackets. It’s sad and irritating.

III.

 The colonoscopy on Tuesday was OK. My doctor was sort of a jerk. He kept us waiting for over an hour and when I got into the procedure room he was playing around with his phone! Seriously? Hint to my doctor friends: don’t do that.

IV.

Here’s the wrap up of  my “big six” Oscar categories from yesterday. I’m looking forward to seeing American Sniper this weekend. Boyhood, Grand Budapest Hotel, and How to Train Your Dragon 2 are on DVD now, so I could catch up with those if I felt so inclined. (I probably won’t do Grand Budapest. That just looks….strange.) The Best Actor race is going to be insane. I think the two contenders are Keaton and Redmayne, since they won the Golden Globes in this category. I love both those actors. I’ll be happy either way, but I’d really like to see Michael Keaton win. As far as Best Actress, Julianne Moore has never won an Oscar, so this would be a first for her, and I’ve been hearing great things about her work in Alice. I’d really like Felicity Jones to win, though. All the acting categories are just chock-full of great names (for the most part), although I think Meryl Streep’s was sort of a…I dunno. Not a throw-away, but something akin? I mean, she’s Meryl Streep. She’s won how many Oscars at this point.

My theater is currently showing Sniper, Imitation Game, Big Hero 6, and Selma, so those are the ones I could see in the theaters right now. I’m hoping Theory and Birdman will swing by.

V.

Reading: Just finished the Big Stone Gap  series, and I should finish Own Your Life today. I really need to get back into The Artist’s Way. I’mw wondering if I should just start over in that regard.

VI.

I have finally joined the masses and watched House of Cards. Wow. What a show. Now, of course, some of that stuff wouldn’t happen in “real life”, but politics is a mean business. It just is. I was talking to my brother about it, and I had the good fortune to work for/with some politicians that were truly servant minded. They wanted to be servant leaders and do the best things for both their employees and the citizens of Ohio. (This is especially true of the Senate President I worked under when I had my transplant. Such a good man.) However, they are not, sadly, all that way. I’m interested to see where season III goes, now that Frank is (SPOILER) President, and I’m interested to see if characters like Linda stick around and work for him.

And, like many others, I want Claire Underwood’s clothes. Not her haircut. I don’t look good with severely short hair. But the clothes!

VII.

Weekend plans: Spending time with a friend tonight; Mass tomorrow; American Sniper with my brother on Sunday, after I teach CCD.

daybook no. 86

daybook no. 86

ThereIsNeverAnythingToFear[5]

Outside my window::

Cloudy, and icy. We had rain, then snow, then rain, then cold….so ice. LOVELY. Glad I don’t have to leave the house today for that.

Reading::

Own Your LifePrayer, and Day After Night, by Anita Shreve.

In the CD player::

Renee Fleming’s Dark Hope–one of my favorite CDs.

wearing::

my PJ’s. I’m having a colonoscopy tomorrow, so today is all about, yeah, prep. What joy. So no point in getting really dressed, right? 🙂

Around the house::

I need to start taking the tree down. 😦 SAD FACE. I do love my tree. And I need to sort through the Christmas cards. I generally keep the ones with photos so I have to sort those out. I keep the nativity scene up until Candlemas, the same as my parish Church, because why not. 🙂

Otherwise, it’s just putting things away, general tidying up. No cooking today, so that won’t be a problem. 🙂

From the kitchen::

Nothing today, and nothing tomorrow.

Wednesday: pork chops

Thursday: Chicken Milanese

Friday: Pasta from Cooking with My Sisters, by Adriana Trigiani and her sisters. I have some pasta I want to use up here, and since I’m trying not to eat meat on Fridays, pasta is a good substitute. That or fish.

Saturday lunch: Chicken curry with apples.

Plans for the week::

Colonoscopy tomorrow. Whee! 🙂

Lunch with a friend on Wednesday

Saturday I want to see The Merry Widow at the movie theater. I love the Met’s Live in HD series, and this one has Renee Fleming and Kelli O’Hara, so win! 

And of course the gym, starting on Wednesday….I’ll be able to take my vitamins and all that again, so I can stop shoveling red meat into me to make sure I’m getting my iron quotient, and I’ll be able to really exercise because I think it’s going to be above 0, so I can leave my house! Yay!

Seven Quick Takes No. 61

Seven Quick Takes No. 61

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I.

This week felt like it flew by.It’s that time of year again, when it just gets closer to Christmas and there’s so much to DO and not enough time to do it! Totally the theory of relativity, right? As a kid, you remember these days going so slowly. And now? Gone so quickly. It’s amazing.

II.

This is partially because there’s a lot going on–tomorrow I’m going to a Penguins/Jackets game with my parents (in which I will be happy with the outcome, because one team I love will win!). On Sunday, it’s the last CCD class before the break, which basically means a video on St. Nicholas and bingo games; then we have a catechist meeting; then there’s a Third Order meeting which concludes with life promises (EEEEK), and then dinner with Mary and lessons and carols at my parish. WHEW. And Monday I have a doctor appointment with all that attends that, and an audition that night.

III.

So, life promises. Yes. Basically, this means I’m a Lay Dominican forever and ever (amen), I promise to live by the rule of St. Dominic for the rest of my life, and be a good Lay Dominican. 🙂 The rule requires that I say morning and evening prayer of the liturgy of the hours, attend Mass as often as possible during the week, go to confession once a month, say a daily rosary, and perform individual religious study. None of these are bound by pain of sin. If I miss vespers one day or something, it’s not a thing I need to confess. But these are the “pillars”, so to speak, of my life, forever, after Sunday. I’ve been in formation for five+ years now, and I’m so glad to be making this final step.

IV.

My Christmas shopping, however, is 98% finished. I still have to get something for two more people, who are hard to shop for. Sigh. I’m hoping to come up with magic inspiration over the next week.

V.

My 2015 calendar is starting to fill up–January has good things (a Symphony concert!) and some unfun/fun things–a colonoscopy (Oh YAY!). Yes, my friends, I need to have one, and the hospital, of course, is freaking because I have a PORT, and we’re going to USE IT, and OH MY GOSH!

Really, guys, it’s not that hard. They don’t even have to access me–mom can do it. All they have to do is push the lovely happy meds into the tube. I do not understand the freak out. It’s an adult hospital I’m going to, but they treat cancer patients, so a port isn’t some exotic medical things they’ve never seen. Sigh. I guess it’ll be a “teachable moment” for them. AS long as they don’t break the port, I don’t care. Just give me the fun meds and do what you have to do, doc.

VI.

in 2015, revision on THE BOOK will begin in earnest. Yes. I have left the draft alone for a few months, I’ve gotten some feedback from my beta readers, and in January it will be time to start massaging it into shape again, and bring out the long knife of editing. Oh yes, my friends. The knife is coming out!

VII.

Next week has two of my favorite days! JANE DAY, her birthday, on Dec. 16, in which we shall all drink tea, watch the Wet Shirt video, and read her books, and Dec. 17, which is Beethoven Day (it’s the day Beethoven was Baptized.) Such great genius!  They were born five years apart (Beethoven in 1700, Jane in 1775), and died ten years apart (Jane in July 1817, Beethoven in March 1827). So on Beethoven Day we will listen to much Beethoven and rejoice in his genius. (Yes, he’s my favorite composer, why do you ask?)

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(Side note: people: stop using this to mean “pounds.” I See it all the time: “The fish was 8#!” REALLY?!?!?!)

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