Seven Quick Takes No. 77

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

I.

Next week there won’t be a 7QT, since I’ll be in D.C. and attending ordinations that day, so I won’t have time to write! I’ll be churching. ūüôā But I am so excited to be heading to D.C. since I haven’t been in so long, and I’ll be with some great friends. Plus, our hotel offers¬†free¬†homemade cookies–hot–for all visitors.

Really? Can I just live there forever?

II.

Let’s talk about some season finales of TV, shall we?

I love¬†The Middle. Sue Heck is an awful lot like me, from her love of Disney World Planning to her academic endeavors. Last night’s season finale really struck a chord with me.

Sue has been trying, all year, to have the Best Year Ever. It’s her Senior year of high school (AKA, The Year of Sue), and she tries to win one of the class superlatives (best smile, etc.), get accepted to a great college, have the most school spirit, and generally be all around awesome.

But leading up to graduation, everything goes wrong. She loses her yearbook–and her name is misspelled under her photo She’s not eligible for any honor cords because ¬†her activities “don’t count”. She misses getting the perfect attendance award because she snuck of campus to eat lunch. Her graduation motorboard is way too big. She doesn’t even¬†want¬†to go to graduation now, because she feels like nothing she did mattered. She has left no legacy. She feels like a loser.

But her mom convinces her to go to the ceremony. At the ceremony, her yearbook is returned–full of notes from people who¬†did¬†notice her, and appreciated her, even if she didn’t get any honor cords or win any Senior Superlatives. She sees the impact she had on the members of her class, and she had no idea they even felt that way.

I feel like Sue sometimes, like everything I do is just passing and I won’t have any lasting legacy anywhere. But¬†The Middle¬†reminds us that people do notice those little things, even if they don’t write about it in our yearbooks.

III.

Another TV finale wasn’t quite so satisfying, and that’s¬†Bates Motel.

Now, I love Bates Motel on a lot of levels, as I’ve previously discussed. But this year it started going off the rails, relative to actual CF/transplant things, and this makes me Displeased.

Emma’s been on the lung transplant list the entire time the show has been on the air, so three years. She hasn’t moved up the list in all that time–her condition has been pretty stable. But this season she started to deteriorate a bit.

Now, the way lungs are allocated is something called an LAS score. Basically, it takes into account how sick you are. The sicker you are, the higher up you are on the list. Emma, actually, probably isn’t sick enough to be first in line on the list. Yes, she’s on oxygen, but her condition is pretty stable.

However, on the show, her dad tells Dylan (Norman’s brother) that the reason Emma hasn’t gotten her transplant is because they don’t have $20,000, which they apparently need to bribe someone to move her up the list.

Um, no. No no no no five thousand nos.

The only way you move up the list is by getting sicker. When I was called for my transplant, I was the top person on the AB+ blood type list, because I was the sickest person that was also the best match for the lungs I received. It’s sort of a complicated process. Organs have to match blood type, tissue type, body size, etc. Emma could only move up by getting sicker, or by people passing on the chance to have the operation, or being removed from the list.

So anyway, in the season finale, Emma gets her call (this is after Dylan has come up with the money and given ¬†it to Emma’s Dad). Emma then proceeds to have a crying jag/meltdown in front of Dylan. Now, I know this makes good TV because it’s cathartic and all that, but you have to talk to social workers and therapists about this stuff before you can get listed. You have to be¬†totally¬†on board. You can’t be sort of wishy-washy. Now, yes, I understand that Emma’s a little freaked, but by the time you get the call, you are¬†about to die, normally. Dying on the operating table doesn’t really phase you, because you are going to die¬†without¬†the surgery very soon.

So anyway, this is all so wrong, people. So, so, wrong.

However, she is right about lungs being tricky, in the transplant world. They are. Lucky us.

IV.

A few reading notes:

The Royal We:¬†Totally based on Prince William and Kate Middleton (right down to Kate’s fashion choices and wedding dress), only the girl is an American, this story of the future King of England meeting his fiance at a British University is well-told and charmingly written. Nicholas and Rebecca meet cute, break up, and finally get engaged–but will they make it to the altar? Nicholas’s brother, Freddie, is hysterical, but Rebecca’s twin is sort of annoying. But this would definitely make a great beach read. If you’re a fan of the British Royal Family, then give this one a whirl.

Made In¬†the U.S.A.:¬†I found this on the remained table at B&N, read the first chapter, and was drawn in to the story of Lutie and her brother, Fate, who are left alone after their stepmother dies of a heart attack in the local North Dakota Wal-Mart. Intent on escaping Child Protective Services, Lutie and Fate drive to Las Vegas, the last known address of their ne’er-do-well alcoholic father, sure that if they find him, he will take them in. But things definitely do not work out like the pair plans, and they’re finally rescued by Juan, a Mexican immigrant who takes the children to his family in Oklahoma.

The book had a pretty dark first half–Lutie does a lot of things to survive and to heal some serious wounds in herself–but the final pages give the characters chances for redemption. ¬†I don’t generally mind dark books, and I’d probably read this again, but reading it the first time had me going “are these kids going to be OK? Because they better be, or I’m going to be¬†really irritated.

The Happiness Project:¬†This is one of my must-reads, and I’m reading it again. It’s a great kick in the pants for self-motivation to Do Better and Achieve Goals.

V.

And since we have book notes, let’s have some movie notes:

Still Alice:¬†The movie that won Julianne Moore her elusive Oscar is much better than I thought it would be. The book is good, but the movie is better–this falls into a small category of books and movies where this is true, for me (some of the others are¬†The Wizard of Oz, Gone With The Wind, and¬†Harry Potter and the Order of the Phoenix). ¬†Moore plays Alice, a linguistic professor at Columbia who is diagnosed with early-onset Alzheimer’s. Moore’s performance is realistic and sympathetic, but the other best part of the movie is Kristin Stewart’s role as Lydia, Moore’s “black sheep” daughter, who comes home to take care of her mother while her father (Alec Baldwin) moves to Minnesota to run a study at the Mayo Clinic. Stewart and Moore could be mother and daughter in real life, and they play beautifully off one another here. I loved how their¬†relationship evolved throughout the movie.

Panic Room: Yes, another Kristin Stewart movie! This time she plays Jodi Foster’s daughter in a thriller that places both of them at the mercy of three robbers. This is one of Stewart’s earliest film roles, and she and Foster are a believable mother daughter pair, complete with the sass and eye rolls. It’s a tidy thriller that ends somewhat predictably, but it’s a good movie to watch if you’re not up to following a complicated plot.

 VI.

CCD winds up this weekend. I’ll miss this class, which was much smaller than my previous class of 35 kids. But each year’s class has its own plusses and minuses, and this has been a pretty good group. I’m curious to see how many we have next year, since that affects the “arts and crafts” aspect of the curriculum. With a group of 35, you really can’t do too many art projects, but with 20, you can.

VII.

Can you believe we’re halfway through May already? I can’t. I swear things move faster as we get older.

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. ūüôā 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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CF on TV: Bates Motel

Emma Decody (Olivia Cooke), Bates Motel

Emma Decody (Olivia Cooke), Bates Motel

Horror movies aren’t really my thing. I also have a deadly fear of stabbings. So that would seem to make me¬†not¬†the prime audience for the TV series¬†Bates Motel, which, as the name suggests, is the prequel, of sorts, to the film¬†Pyscho.

But then I read that there would be a character with CF, and that clinched it, because I’ve never seen a main character with CF on TV. Ever! So now I had to watch, mostly to see how the writers would portray a character who sounded an awful lot like me.

Emma Decody is a British transplant who lives in White Pine Bay with her taxidermist father. (Her mother ran off a few years ago) When the show starts, both Emma and Norman are juniors in high school and are in the same English class. Emma is smitten pretty quickly with Norman, who treats her a lot like the sister he never had, and it isn’t until the current season that they get together romantically, although Emma’s been hankering for it for a long time.

Emma, like Norman, is pretty much a loner, although she seems to get along OK with everyone at school. No one teases her or openly shuns her due to her illness or the oxygen tank she carts around. It’s established in the beginning that Emma’s disease is pretty progressed, and that she’s on the list for a transplant. That being said, Emma tries to live as normally as possible, which means going to school, helping her dad around the house, and even taking a job at the motel. She’s pretty insistent about doing things that people her age do, even when it’s a big strain on her (like jumping off a cliff into a pool of water in season two, like Norman and his friends were doing, or hiking up mountains with Norman).

Emma is, to my mind, portrayed well, sympathetically, and accurately. Olivia Cooke does a fabulous job bringing her to life. Her desire to be normal and to have a normal life are apparent, but occasionally her illness will flair up and interfere, like in a recent episode where she asked Caleb, Norman’s half-brother, to give her chest PT on the floor of the Bates house bathroom to help loosen the thick secretions that are what slowly destroy the lungs of CF people.

The thing I like best about this is that Emma is portrayed as a normal teenager. She has hopes and dreams and fears just like everyone else, and I especially like that both Bates brothers treat her as a friend and an equal, not as something strange or inordinately fragile. When they try to be too careful with her, she normally smacks them back to reality.

I’ve never seen Emma eat on TV, so they haven’t had to work enzymes into the show, or insulin. ūüôā But what I’ve seen is accurate and humanizing. The show gets good ratings, so I’m glad that more people can become aware of CF and what it does to people, and also that we’re “just like you!” (insert fakey smile here) Emma’s blog on the A&E website also links to organ donation, which is also a total plus.

Giving Tuesday

OK, so it’s Giving Tuesday. Basically, the day we all spend money on charities. ūüôā

I love a lot of organizations–arts organizations, historical organizations, Catholic organizations–but the ones closest to my heart at the ones that support CF research, treatments, and support.

So, if you have some pennies you’d like to donate this season, may I suggest:

  1. The National Cystic Fibrosis Foundation
  2. The Boomer Esiason Foundation
  3. Nationwide Children’s Hospital, which has kept me alive all these years, and has a¬†WONDERFUL¬†CF team and center!

These places don’t run fancy ads with celebrity spokesmen. (Unless you count the BEF, since he is¬†¬†famous.) NCH runs ads here in Central Ohio. But all of these organizations have helped me stay alive, so that makes me extremely happy and grateful.

So, if you have spare pennies–donate them here?

Grace will lead me Home

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There’s been a lot of talk lately about Brittany, the girl in Oregon who is 29 and has decided to end her life in a few weeks, because she has cancer.

I was going to write about this. But then Ann Voskamp put this on her blog, and…all I can say is¬†yes.

Yes, five thousand times yes.

Suffering is pain. Suffering is darkness and doubt and horrible things, and there are times when in that suffering and pain we want to end it all, to end in on our terms.

I know. I’ve been there. I’ve almost said no so many times. So many times I wanted to close my hands, like Ann says in her book, and say¬†no, God! No God, I will not take this from your hand!¬†

No, no, no. I will not.

But the thing is…..that’s where the pain all¬†comes from. From saying no.

What kicked Lucifer out of heaven?

Saying, no, God. No, God, I will not do this. I will not serve. 

And finally….

Thousands of years later….the world was healed and saved with¬†yes.

Yes, God. Yes, I will do your will. 

“For I have come down from heaven, not to do My own will, but the will of Him who sent Me.”

–John 6: 38

I have laid in the bed, in the dark nights, with tubes in my body and pain in my mind and thought¬†I can’t.

I have fought against that will. I have wanted to stop.

But then I realized that God is in all those details. He knows when I sit and when I stand, and He has marked out my day aright.

There is a plan…it’s just not one I know, all the way to the end. But to end the story before it’s really over? To deny myself, and others, any of the precious days that God gives?

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I can’t.

We have to–all of us have to–trust in the plan. Open our hands and say “yes” to whatever is placed in it.

God is always good. Always. No matter what is happening.

In the suffering is the good, the glory…its beauty.

And I say that as someone who knows it, and who has wanted to run away from it and deny it and has wished for something that would be easier.

But that’s not His plan for me. His plan is for me, right here, and right now, with this body.

When He calls me, I’ll go. But until then….He’s the author of my story.

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A thought on healthy and not

Tell me how many times you’ve heard/read the following:

“I just want a healthy child.”

“All the kids are healthy, so that’s what matters.”

“i don’t care if it’s a boy or a girl, just as long as it’s healthy.”

(Or even the St. Jude’s tagline at Christmas: “Give thanks for the healthy kids in your life, and give to those who are not.”)

Of course you’ve heard these. They’re almost cliche, given how often we hear them.

How about we change it to:

“I just want a child¬†who’s alive.

“All the kids are¬†alive, so that’s what matters.”

“I don’t care if it’s a boy or a girl, just as long as it’s¬†alive.

(and what if you don’t¬†have¬†healthy kids in your life? There are CF families¬†where every kid has CF. No “healthy” kids there.)

This may shock a lot of folks, but health is not the be-all and end-all of life. I’m pretty sure my parents have often felt they’re glad to have a child who is¬†still alive.

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I will never be healthy–so, does that mean my parents shouldn’t be glad about me? Since I’m¬†never¬†healthy, “what matters”?

No one gets out of life alive.¬†Everyone dies eventually. Eventually, the body gives out, and guess what? That’s a preordained outcome!

Some of us are healthy our whole lives. I will never be one of them. That’s OK. But it does get grating to hear people read and talk about “health” is all they want.

That’s a fairly tall order, ladies and gents.

Divine Mercy on the sideboard (with tea :) )

How about, “life is all you want.”

Hmmm? That might work a little better.

I don’t want to be “healthy.” I want to be¬†alive.

So let’s be glad for the people that are with us, in any state that may be, and let’s celebrate that. Let’s cherish¬†that. The moments when we are all together, and all¬†alive together. Who cares if someone in the room has cancer or seizures or CF or someone else’s liver? At the moment, we are all here. We are all doing whatever it is we do, and that makes the moment even more precious, because of the fact that life is so incredibly tenuously fragile.

Every single moment is fragile and wonderful and full of….everything, really. Virginia Woolf wrote about that in¬†Mrs. Dalloway, and it’s true.

So stop thinking/saying that all you want is “health” for whoever. How about–all you want is¬†life.

That’s still a pretty awesome gift.

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on self hate

Yeah, bet that got your attention, oui?

Don’t worry, I don’t hate myself. This isn’t going to be a 90s emo post (for those of you who remember the 90s emo days).

I have a friend who had a chronic illness, diagnosed later in life, and recently he was talking about how he wrestles with hating himself for being this way. And, me being me, this made me think, and this is basically a longer version of what I said to him.

I don’t hate myself. I’ve never hated myself. Hating myself for having CF would be about as sensible as hating myself for having blonde hair or blue eyes or freckles. It’s part of who I am, and I’ve never seen a reason to hate that.

Now, does that mean I hate¬†some of the things it does?¬†Well, yes. Do I hate the stress it puts on my family? Yup. How it impacted my siblings’ lives? Yup again. Do I hate always having to explain and sometimes wrestling with my body? Well….I don’t hate it but, but it’s darn inconvenient.

This is the way God made me. I am fearfully and wonderfully made, and yes, that includes my really screwed up genetic code. But that doesn’t make me hate myself. It gives me a different perspective, yes. But I’ve often pondered what my life would’ve been like¬†without¬†everything. I wouldn’t be the person I am, and most of the time, I like who I am. ¬†God made me this way for a reason, and part of my being on Earth is to use that reason for His greater glory.

In my first grade class, we teach the kids this at the beginning of the year:

Q: Why did God make you?

A: God made me to know him, to love him, and to serve him in this world, and be happy with him forever in the next.

This is how I come to know and love and serve God.

I know some people have come closer to God because of me. Well, OK, not because of me, but because of my situation. The man I almost married had almost zero religious upbringing, but when I was in the ICU and almost dead, he went to a Roman Catholic church and prayed the rosary. He went to Mass with me, and he carried a rosary with him most days. I don’t know if he still does this, or if he ever became Catholic (I wasn’t going to make him convert, by the by), but I do know that he knows about these things now. He knows about prayer and its power.

Now have I been¬†angry¬†at God? On occasion, yes. But not because of being the way I am; it’s usually because I’m frustrated with the way things are currently going. Why did he give me the desire to be married and have children if that’s not going to be fulfilled (at least not yet)? I dunno. But I try to channel it in healthful ways.

I know people with CF who hate their bodies, hate the way their made. There’s a desire there to punish themselves for being “weaker”, or “less than” other people. But I’ve never been one of those people.

 

 

Seven Quick Takes No. 49

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I.

If it’s Friday….it’s time to go back to River City!

Really, peeps, I am so excited about this show. I have a “family” now–one of my good PCT friends, who is also the constable in the show, is my “husband”, and we have three children, ages 7, 10 and 15. They are great kids and I’m glad they’re in my “family.” We got along immediately, so I think that bodes well for the future.

Last week we started blocking the opening, “Iowa Stubborn”, and tonight we’ll review that (and finish blocking it), work on music and blocking for “Trouble”, and work on the music for “76 Trombones” and “Wells Fargo Wagon”. Tomorrow it’s the gym scene (“76 trombones”, the Fourth of July sequence, if you’re familiar with the show) and the first Pick-A-Little rehearsal, which I am¬†totally so excited about¬†that it needs to be in italics. ūüôā

II.

My Pulm Rehab stint got extended again for another two weeks, and this is definitely not a bad thing. It means I’ll be in¬†awesome¬†shape for Disney World (which is also in about two weeks!). ¬†All of our dining reservations are made and we’ve planned out what days we’ll go to what parks. Extra Magic Hours (EMH) work in our favor this year, meaning I’ll get to be at Magic Kingdom until midnight (yes, very poetic on their part) and EPCOT until 11 another night. We are super loving that, especially Dad, who loves EPCOT and we didn’t get to spend nearly enough time there last year.

III.

EMH are basically extra time in the parks for people who are staying in Disney resorts (in WDW lingo, “On property”). It’s one of the nicer bonuses, besides just staying in a ¬†really awesome hotel, which is a bonus in and of itself.

IV.

So I wrote this this week, and apparently people like it, so read it, please? Thanks. ūüôā

V.

And while we’re talking about health-ish stuff, here’s another thing:

May is Cystic Fibrosis Awareness Month. If you read this blog regularly, you are pretty “aware” of CF, because, yeah, I write about my health a lot, and CF is a huge enormous part of that–it’s what led to my transplant, after all.

Now, CF is what’s called an “orphan” disease, because it doesn’t affect a lot of people (it¬†is¬†the most common genetic disease in the US, but that doesn’t mean much in terms of sheer numbers). As such, it doesn’t get the funding that other diseases, like cancer or AIDS or whatever, get. It does get¬†some¬†government funding for research (from the NIH), so when people say CF receives no government funding, they’re wrong. The¬†foundation (the CFF) doesn’t. But CF itself does.

So, anyway: if you have any extra pennies, could you consider donating them to the CFF? I’d appreciate it. Lots of people would appreciate it.

Merci.

VI.

An addendum to that: Since I’m “friends” with a lot of people who have/are affected by CF on Facebook, there’s been a lot of CF Awareness Month stuff going on. And I fully realize that what I’m about to write it just about me, but I’m gonna share anyway.

A lot of people call us “heroes.”

I am not a hero.

I’m a regular person doing her best with the life she has. I’m not saving anyone else, I’m not doing anything brave. I’m living my life like bazillions of other people all over the planet and mostly trying not to complain about it and do the best I can.

This does not make me a hero, guys. Negative hero-ness.

In the words of¬†Harry Potter: “But I’m Harry! Just Harry!”

Yeah, I’m just Emily. I’m cool with that.

VII.

And also speaking of CF, one of my favorite TV characters¬†ever¬†has CF, and I’m basically her, so I leave you with this photo ūüôā

(For those of you who don’t know–she’s on¬†Bates Motel, on A&E, which you really should watch because it’s AWESOMESAUCE)

Emma D

Seven Quick Takes Vol. 35

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I.

What a week.

So we started with this, which lead to me being hermit-ish all week, which worked out well, because now I have a cold. ¬†Now in the grand scheme of my life, a cold is not a huge deal–even with a suppressed immune system–but since we’re doing Super Immunosuppression This Week, it’s a bit more of a Deal that usual. I’m hoping that I can get over it with a day and half of hermitness.

The Massive Steroid doses have stopped, praise Jesus, so maybe now I’ll stop wanting to eat the table?

II.

In addition to the steroid doses, there’s also two new antibiotics on board, which you would think would help with the cold thing, but….not so much so far. Oh well. At least I can take cold meds now; I couldn’t before, with CF, since the last thing you want is anything that’s a cough suppressant in any way.

III.

The huge benefit to all this, obviously, is that I’ve gotten to read a lot. ūüôā I ordered four Dickens novels from Amazon last week and they arrived, thankfully, on Monday, so I was able to read two of them. I’m hoping to get through¬†Pickwick Papers¬†today. Of course my overriding sentiment with Dickens is that his books would have been much better with an editor. I do realize that he wrote and got paid as a columnist for most of his writing. But still.

That being said, I really enjoyed Dombey and Son (much more than I thought I would, even if the titular son does, erm, disappear rather early), and I liked Old Curiosity Shop, although there is a clear instance of toooooo mannnnny characters. Oh well.

IV.

I do need to leave the hermit nest today, if briefly, to re-stock the kitchen. It’s going to get really cold again. When I say “really cold”, I mean temps below 0 sans wind chill.

I am aware it is winter. I am aware, in winter, it gets cold. I have lived in the state of Ohio my entire life, and I’m well-aware of this.

But I severely dislike cold that is in single digits, and below zero. And yes, I’m gonna complain about it. It’s pretty if I don’t have to go out into it (snow, anyway.). But it shouldn’t be like getting ready to go deep sea diving just to take out the trash. That’s ridiculous.

V.

Another thing I did this week was knit some bookmarks. I have actually gotten much better at this, and they LOOK LIKE bookmarks! Huzzah! The yarn is from Knit picks, and I think it’s been discontinued, sadly. It was called Imagination and had all sorts of fairy tale colors. I’ll have to put pictures up later. The two completed bookmarks are in “Unicorn”, with lots of baby pastels, and I’d like to knit one in “Loch Ness”, which is deeper blue, greens, browns–very Scottish looking.

VI.

In a sampling of why you will never be totally prepared for CCD in 1st grade, this is what the kids asked last week (small sampling):

“When did St. Joseph die?”¬†(we don’t know, but before Jesus began His public ministry at age 30)

“How did St. Joseph die?” (Again, don’t know)

“How did Mary die?”¬†(Explanation of the Assumption)

“When we use holy water, are we re-baptizing ourselves?” (Explanation of sacramentals)

VII.

And, finally: this.

Praise Jesus. An anthem singer I can tolerate!

Doctor update 11/4

OK, so in the “education and awareness” category, here’s how today’s doctor appointment went down:

  • blood draw via the port. It liked me, life is good. Numbers here look happy except for a few things we’ll talk about later.
  • chest X-ray (CXR): No problems here
  • PFTs: WE just did basic pulmonary function tests (PFTs). These are stable. I was hoping the overall capacity would go up, but when I talked to my doctor he said that that probably won’t happen because: 1) Lot of scar tissue in the chest cavity limits the ability of expansion; 2) my lungs were trimmed, so also, limits expansion possibilities (lungs are “trimmed” when they are a bit too big for your body. I actually grew about 2 inches post transplant, but at the time I was about 5’2″. So, small.) and 3) my numbers are above normal for adults. ūüôā So Unless I Become Michael Phelps (swimmers actually can increase their capacity, to over 100% sometimes), we’re limited on what we can do here. I actually didn’t know all this, so I felt good after this talk
  • I have to have a colonoscopy next year for a baseline. I really don’t mind this. I’ve had all the “prep” drugs, or anyway, drugs of that ilk, before, so I’m fine with that. And it’s fun drugs. We’ll have to work our port access for IV access because, you know, my veins are FUN, but we can do that later. CF folk have a higher risk of colon cancer, and transplant increases that¬†again (cancer, in general, although lymphoma is the most common one).
  • I’m seeing my ENT in January, because the sinuses hate me. So we may need surgery on¬†those¬†next year, too. My ENT likes to do it every other year, so 2012, 2014….
  • My blood work was good, but my iron levels were lower than normal (I”m anemic, so they’re usually low). So we’re trying to raise that level a bit by eating more red meat, and other iron rich foods. Apparently clams and oysters are high in iron, as well as things like sesame-seed bagels. Who knew?
  • Also the dietician has given me full rein to indulge the CHEESE. Because my bone density is¬†awesome, and we like that, so cheese please! And dairy! She likes the fat free milk I drink from a nearby farm in Athens.
  • ALSO: I got to drop a drug! Yes! One of my meds is being removed from my list. My doctor, Dr. H, gave me the option and I took it. So yay! It’s weird seeing my drug dosages slowly reduce.
  • Don’t have to go back until Feb. 3. Score!