Reshare: Illness Saved My Sex Life

I’ve been seeing a lot of buzz on twitter and other blogs I follow about sex in relation to illness. I’m really glad people are talking about this because it can be a very difficult thing to navigate!

I wanted to take a minute to reshare a post I did a while ago for Hearing Elmo titled “Illness Saved My Sex Life” since it’s a hot topic right now. CLICK HERE to read it and keep the conversation going!

I know my blog has been a ghost town for a while. I’m still trying to figure out this whole “getting anything done with an infant in the house” thing. Hopefully this reshare and my last post about Linus and his blanket will tide you over while I work on some exciting things for you including a review of a really cool tool from The Allergista!

Stay tuned…

Linus Without His Blanket is All Of Us

Few things in this world capture the struggle of life with chronic illness as well as the dynamic of Linus Van Pelt and his blanket. Most days, Linus is just like the rest of the gang – he just happens to need a blanket at all times.

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And when he has to be without his blanket, he kind of falls apart. Occasionally he can go without it (“Look! I don’t need my blanket anymore! I’ve gone four whole minutes without it!”) but for the most part Linus without his blanket is a much different boy.

And Linus without his blanket so captures me without medication, or me in a flare, or me without access to a doctor. Sometimes I calmly mope by the dryer like Linus up there, but more often I’m like Linus in the special “A Boy Called Charlie Brown.” See, Charlie Brown is going to represent his school in the regional spelling bee, and Linus gives him his blanket to take as a “good luck” charm.

Of course, Charlie Brown hasn’t been gone long before Linus needs to go and get his blanket back. CLICK HERE to watch starting at 53:47, or check out the embedded video if you want to watch the entire special.

Linus is in a state similar to one I am in when I’m in a flare. Let’s see how his sister, Lucy, reacts.

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Linus explains his predicament and ends with “now I keep passing out!” Been there, buddy. And Lucy, after much eye-rolling, suggests he step outside for some fresh air. Points for listening and even suggesting something that could be moderately helpful, but it’s pretty obvious she’s more annoyed than concerned. Frankly, I’ve had swirls and dots around my head and had my family act as though I was a child without a security blanket – in other words, someone who is overreacting to a stupid problem.

But still, Linus does try going outside. But it isn’t enough. So he enlists help from Snoopy. He says he needs to find Charlie Brown and get his blanket back! And Snoopy agrees to accompany him. With much eye-rolling but at least he’s kinder than Lucy was. Good on ya, Snoopy. Way to help a friend in need!

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Also, this is the most accurate representation of my face on the way to doctor or medicine when panic has set in. Doesn’t matter if I’m in physical pain or having a mental anxiety attack. This is me:

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And my healthy friend is just lookin out the window like “Is that a pokestop?” (YES I’M ON POKEMON GO- we can gush about how amazing it is later).

Meanwhile, Charlie Brown isn’t feeling so great either. He’s been studying spelling all night! He even exclaims that this is too much! He needs to put his health first and take a break! Which of course he doesn’t, because the spelling bee is too important (as an apparition of an angry Lucy reminds him). Surely he will be able to relate to Linus and sympathize…

Except no! Because just like every healthy person who thinks they “get” chronic illness, he might think that feeling sick or stressed from overworking himself gives him insight. But it doesn’t. Do you know what the main difference is between chronic illness and acute illness? Watch this– CHARLIE BROWN JUMPS RIGHT UP WHEN HE SEES THEM. When he sees his friends he’s suddenly lit with sprightly enthusiasm! Huzzah for you and all your spoons Charlie Brown!

Meanwhile poor Linus passes out waiting while Charlie Brown and Snoopy exchange pleasantries.

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This scene is actually comedic genius. Snoopy runs to the bathroom to get a glass of water – which he comes back to drink himself while he watches Linus come to and explain that he needs his blanket back. Damnit Snoopy.

And after all this, Charlie Brown really doesn’t know what happened to the blanket. He’s been so busy with his own problems you see. The language here is great. Charlie Brown calmly says “Gee I’m sorry Linus” with almost no emotion while Linus is panting and yelling “FORGOT?!?!??! FORGOT ABOUT MY BLANKET?!?!?” Because it’s his entire freaking world.

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Screw you, Charlie Brown. Maybe it’s in the lobby? If not, it’s between here and the library?! I’M LITERALLY DYING. I DON’T HAVE TIME FOR YOUR MAYBES.

Now Linus is getting mad. Because everyone around him is horrible so he has every right to be. “He THINKS it’s at the Library!” yup, he even gets a little Gollumy. Nasty hobbitses… they lost the precious…

Then he snaps. He turns around and yells “CHARLIE BROWN I OUGHTTA KICK YOU.” But then he passes out because flares tend to keep you from fulfilling promises of violence.

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DAMNIT SNOOPY.

Then Charlie Brown makes him leave, noting aging how IMPORTANT it is that he keep studying. Yeah no problem buddy, it’s just MY LIFE. But it’s no SPELLING BEE so I understand! Asshat.

So now Linus has to go walk all over town looking for the light of his life that his “best friend” just “forgot about.” And Snoopy tags along, which probably makes him feel good about himself even though he’s not actually helping AT ALL.

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And WTF is this Snoopy? You’re going to wander off and have an ENTIRE FREAKING ICE SKATING MONTAGE while I SLOWLY DIE ALONE? It’s not even just ice skating, it turns into an entire imaginary hockey game. DAMNIT SNOOPY THIS IS IMPORTANT.

And then the blanket isn’t even at the library. All that for nothing! Linus snaps. All hope is lost and Snoopy’s down there making faces at statues, that’s IT. YOU’VE BEEN NO HELP AT ALL, SNOOPY!

But it doesn’t make him feel any better. Snapping at people when you’re suffering rarely does. But it made me, the audience, feel better.

Damnit Snoopy.

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“THE WORLD IS ENDING AND HE CAN’T EVEN HELP FIND A BLANKET.”

I feel you Linus. I feel you.

And after vowing to never forgive Charlie Brown for being a self-absorbed idiot who looses blankets, he returns to find IT WAS IN CHARLIE BROWN’S STUPID ROOM THE WHOLE TIME. AND HE’S USING IT TO SHINE HIS SHOES FOR HIS F%#!$)*@ SPELLING BEE.

DAMNIT CHARLIE BROWN.

YOU’RE THE LITERAL WORST.

But, much like when the cold find warmth or the hangry get fed, once Linus is reunited with his blanket and stabilized, all is forgiven. He even goes on to support Charlie Brown as he faces the spelling bee.

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You da real MVP Linus.

Anxiety? OCD? Or is Everyone This Weird?

It’s time I told you I’m crazy.

When my gastroenterologist diagnosed me with IBS, he said it was anxiety-based and I was put on zoloft. That’s the closest I’ve come to a diagnosis on my mental health. A long time ago I was screened by a psychologist and diagnosed with some temporary teenage form of depression. We stopped going and I never heard much about it in the first place. And here I am, on zoloft (because one does not simply ‘quit’ zoloft) with no real diagnosis or idea if I have a mental illness or if I’m just a little uptight.

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Sometimes I read things online about depression, anxiety, OCD, or even autism, and think “hey that sounds like me, weird.”  There are some bizarre things I do all day every day. Why write about them? Well for one thing, I like doing them and people seem to find it interesting. Some people even seem interested in implementing my “systems” or rituals into their life in a much less obsessive/extreme way. Plus I’d like to know– do you do this too?

There are two major “systems” in my life. I’ll start with the smaller one: my clothes system. I started doing this as a child and refined it over time. It began as me organizing my clothes in a particular way. It’s hard to explain, but it has to do with randomization and color. I’d choose something like a book or poster with colors on it and order my clothes according to it… let’s say I was using an image of a rainbow (which I never did because randomization is a big part of this, but for the sake of example):

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I’d hang up (or stack folded clothes) like this: A red shirt, then one with orange on it, then yellow, green, blue, dark blue, purple, and then white for the clouds. Then I’d choose another image and keep going (I do this to organize other things too, like movies or our toy displays…). But I had trouble keeping them in order because my mom would put away laundry for me sometimes or I’d forget where I was in the “line” or I’d need to wear something specific one day. Over time I refined my system. I’d put a penny inside the folded shirt I wanted to wear next, stacking newly washed clothes on top to await integration into the “system” until I reached the end of the stack. I also alternated between stacks in the drawers and the hanging clothes. I marked my spot in the closet by simply keeping my extra hangers between the new clothes and the “ordered” clothes. My pants are a separate, more flexible system not organized by anything really, just hung up in whatever order they’re washed and separated by not yet worn and worn once or twice before it’s time to wash them. I even have a very rudimentary organizational system for my underwear?

WHY? I’m sure you’re asking. I don’t actually know. It’s not like there was a day I decided to do this, it happened over time. My mom was bewildered to find pennies sprinkled throughout my drawers and she can’t believe I still do it as an adult in my own house. I remember that my mom encouraged me to lay out my clothes for the next day before I went to bed, and I remember that I hated doing that. It really stressed me out. I guess this is my elaborate response to that stress – now I just get up and put on whatever is next. If it’s inappropriate for the occasion or I need to wear something specific, I don’t mind breaking the system. For just one day I mean.

It has a lot of pros. For one thing, it has a similar effect to this cleaning tip:

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When a shirt/dress comes up in the system that I don’t want to wear, I question why that is and usually decide it’s time to let that item go.

Cons? Well…mostly just that it’s a crazy thing that no one does.

But that was the tamer of my two systems.

Get ready folks.

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We’re going down the rabbit hole.

Everything I ever do is governed by a system. I have a list that takes up about one page of a word document. On it are items like this:

  • Work on Writing Script A
  • Work on Writing Script B
  • Blog Post
  • Clean House
  • Laundry
  • Manage Billing/Freelance Work

and items like this:

  • Watch a Movie
  • Netflix
  • Read
  • Video Games

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ect. ect. basically everything I ever want to do, work or hobby or laziness or practicality. Things like “eating” and “sleeping” are not on the list.

This is my time management tool. There are “fun” things and “lazy” things and “project” type things and “chore” things all mixed up. Using a random number method (I used to draw from a deck of playing cards – now I use a 12-sided dice) I count down from the last thing I spent time doing and do whatever is next, giving each day a (hopefully) fair mix of “fun” and “work.” I roll the dice for things like eating and sleeping too – whatever comes up on the list at bedtime I trade for “sleep,” same for mealtimes. I roll the dice and count down the list to what’s next – say, reading – and instead of reading I eat dinner. Yes, this does mean sometimes I miss meals in favor of doing something on the list, and sometimes I stay up late to do something on the list. Those are cons.

But the pros far outweigh them. For one thing, I’m always steadily making progress on my goals – writing stories, working on my blog, watching through TV shows on Netflix, and reading good books. I don’t feel bad when I take “me time” because it’s all structured. And I never feel “bored” or like I have nothing to do.

The biggest downside really is when I have to break the system for something like the holidays. Around Christmas, for instance, there’s too much to do to stay on the list system. So I have to go commando for a few days before I re-randomize the order of the list and start again. It’s usually fine. But having this ritual of looking at the list and counting throughout the day helps keep me calm and focused. Sometimes to my detriment – it can really annoy my husband when I get bent on doing something because “it’s on the list” when he wants me doing something else. I try to be flexible and “trade” tasks for whatever he wants to do or if I need to go in to work or something like that. But it can be annoying. I understand. BECAUSE IT’S FREAKING BIZARRE. But this is my life.

This one also started when I was a kid. Initially, I had four different colored balls. Yellow for “chore,” pink for “projects,” blue for “relaxing,” and green for “fun.” I mixed them up in different orders and made sure to do one thing for each category each day. But this spiraled into listmaking: I made a list of all the movies we owned so I could watch all of them before repeating viewings. Stuff like that. Then when I was a teenager I inexplicably became a morning person: I woke up at around 4 each day and I had a little box of tiny ripped up pieces of paper with my “morning routine” on them: this included writing my daily xanga blog post, enjoying a cup of tea, and even taking naps in between getting dressed, eating breakfast, and packing my things for school.

I DON’T KNOW WHY.

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I definitely didn’t STAY a morning person.

Then, around the time I got a computer, I was taking an interest in filmmaking and screenwriting. I wanted to film stuff and write stuff, but when I wasn’t at school or at marching band practice, I felt overwhelmed. I needed to do homework and practice colorguard, but I wanted to study film and write scripts too. And having so much to do usually made me freeze up and not do anything.

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And so, The List in it’s current form was born.

So I guess now that I’ve written it all out, it does seem like there was some level of problem-solving going on here. But why am I such a spaz that I solve problems in the most random, round-about way possible? I don’t think I’ve properly explained either of my “systems” but even if I could, it’d probably still sound like mad ravings of a seriously anxious person.

Which I guess they are.

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I don’t need to flip the lights on and off to keep my family from dying or anything, but at least that sounds crazy enough that you’d feel sympathetic – clearly that person can’t help but be that way. But me? I can get off my systems, bend them, and change them. I seem perfectly capable of living like a normal human, but for some reason I chose this.

My sister is terrible at making choices. She’ll ask us all what she should do or wear or say, take votes, then ask if we’re really really sure. I think I have the same issue, but instead of finding someone to make my choices for me, I chose… randomizing.

Like a crazy person.

Anyway, I don’t feel bad staying on zoloft without a “real” diagnosis. I’m pretty sure I need it.

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Book Review: The Mayo Clinic Guide to a Healthy Pregnancy

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My son did just turn five months old, but I still finished reading this book (however slowly) because 1.) I am a book completionist and 2.) out of all the pregnancy/childbirth books I read, this one was my favorite.

My insurance company is Blue Cross Blue Shield, and they surprised me during my pregnancy. I mean in a good way – yes, it is possible for health insurance companies to have good surprises. For one thing, I was given a case worker who called me every month to ask me how my pregnancy was going and check up on my physical and mental health. That was pretty nice. But what I liked more was getting this surprise package in the mail. A free book!

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And I really really liked this book. I was sort of predisposed to because it’s from the Mayo Clinic. I admit I don’t actually know a lot about the Mayo Clinic, but when it pops up on the health blogs I read, it’s always a good thing. I think of the Mayo Clinic as the place you go when doctors fail you. Like, going to the Mayo Clinic is actually a little medical fantasy of mine.

(Side note: how sad is it that I have a medical fantasy instead of fantasizing about just being well?)

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This really is the perfect pregnancy book in my opinion. It’s all fact-based and it focuses on delivering medical information in a way that’s simple enough for a non-doctor to understand. There’s no kumbaya in this book. I’m an emotional person who loves romanticizing things but when it comes to my health and my body, I don’t like to wade through fluff. I want the facts. I will add my own kumbaya, don’t worry. It’s childbirth, I was drunk on kumbaya hormones the ENTIRE time. I needed to understand what was happening and what was going to happen, and I only had nine months to learn.

Speaking of which, that’s another great thing about this book – it’s quick. It’s also got a great reference section that will point you exactly to whatever information you’re looking for. This book is definitely set up to be a reference book – you can read month by month chapters on the developing pregnancy, and you can look up any symptoms, illnesses, medicines, diet questions, basically anything that pops into your head very easily. Of course I read it cover to cover because that’s what you do with books in my opinion. If I need a quick reference, I’ll reach for google faster than I’ll reach for a book. Still, it wasn’t bad as a cover-to-cover read either, and I appreciate that versatility.

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Look baby, no hands!

It did pull the same thing as What to Expect When You’re Expecting and the Official Lamaze Guide did in the chapters on complications and loss – saying not to read this unless you’re experiencing a complication. I get that pregnancy involves a lot of undue worrying – BELIEVE ME, I know – but I don’t know. Education eases my fears. I know not everyone is that way. But I’d prefer to see warnings more like “read this section only if you feel learning more will ease your fears – anxiety is very bad for expecting mothers and you may skip this section if you feel it would distress you.” Or something like that.

As much as I really liked this book, it was pretty far from perfect. I admit that some of my thoughts may be biased because of the fact that this book was free. I automatically assumed that because it was free, not as much effort was put in to it.

This book does seem like it was largely copy and pasted from a conglomeration of Mayo Clinic sources rather than compiled by an actual writer. I say that because there are a lot of formatting errors, like a lack of spaces between words or extra spaces around punctuation. And occasionally there are typos, usually in the form of tenses that don’t make sense. There was even one instance in the pregnancy loss section where a paragraph was straight-up repeated. That’s pretty sloppy and does sort of make you wonder how much you can trust it when there were clearly…. lapses in effort.

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But I also got this book for free. And the information was good. It never showed bias towards natural childbirth or more medicalized childbirth. Plus, even in sections where you might think they’d have to get fluffy (like the section on pregnancy loss) they keep it very respectfully informative. They discuss the emotional recovery aspect very seriously, encouraging the reader to seek support and care, but the book also remembers its role as a giver of information, and offers data as a was to understand what physically happens in the hopes that it might bring some level of comfort and acceptance. It also very pointedly lays out things that cannot cause pregnancy loss, to lay to rest any blame game the reader might take up.

It also had an entire section on chronic illness and pregnancy, and it was pretty extensive! That’ll always win you points on this blog.

All in all, I do recommend this book. If you get it for free, definitely read it. If you’re interested, go by your local Half-Price Books or check online and buy it used. It’s not going to read like a New York Times Best-Seller, but it’s got accurate, unbiased info, and that’s very hard to find. Especially when it comes to pregnancy.

After reading this, I am definitely going to seek out the Mayo Clinic Guide to Your Baby’s First Year (even though it’s almost half-over already) ((*cries in the corner*)).

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They hooked me with their free book and now I’ll buy the rest of them. That’s how they get you!

Madeline and Childlike Pride Amid Illness

In an old house in Paris that’s covered with vines

lived twelve little girls in two straight lines.

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When I think of Madeline,  I think of my sister. All three of us loved the Madeline books, cartoons, and dolls, but most of our Madeline books and dolls belonged officially to my middle sister. I was 7 years old during her Madeline phase. She was 5. And she also happened to be in the hospital. She had a brain tumor, two surgeries, and spent over a year in the children’s hospital. She’s now a happy, healthy adult.

Being that I was 7, my memories of that time are trivial, and as I’ve grown older, I’ve gained more and more insight into the gravity of the things that happened then. Being diagnosed with a chronic pain condition as an adult has also given some of those memories new meaning – like Madeline. Because now I feel more deeply connected to Madeline, and I wonder if the people giving my sister Madeline dolls and books did so with these same thoughts in mind.

Madeline is, on the surface, a series of stories about an impish girl who, as the stand-out scrappy runt of an orphanage run by a fretting nun, gets into heartwarming shinanigans in gay old Paris. But there’s a bit more there.

The Madeline book that I remember most vividly and that, I believe, is the most famous, is one in which Madeline has appendicitis. Miss Clavel, the nun, wakes in the night because “something is not right” and instead of finding Madeline making her usual trouble she finds her in bed with a burning fever. Madeline is rushed to the ER and undergoes emergency surgery.

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Everything turns out alright. And Madeline is thrilled by the whole thing. The iconic moment from that story is when she proudly shows off her scar.

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And that stuck with me because that’s exactly what my experience with my sister was. Her room was full of the most wonderful toys and snacks and very interesting hospital things, and across her head was a scar, just like a headband would be across her head. I honestly don’t know how she felt about it– if she was self-conscious or if perhaps Madeline helped her feel proud of it. I thought it was cool. I didn’t have very interesting thoughts. I was told repeatedly not to touch it so I spent most of my time thinking about touching it.

Sister of the year right here.

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Anyway.

So that’s probably why Madeline books are a good present for kids in the hospital. I don’t know. But what’s really interesting to me now is the Madeline dolls my sister had.

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Pretty run-of-the-mill dolls. Some stood on the shelf, others were floppy rag-dolls for cuddling. But they all had something in common.

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You could be sure that whether she was a doll, in a book, or on the screen, she had her scar. Why? Because it’s a part of her character. You can’t have Madeline without her scar. You can’t have Madeline without her story.

And dolls get such a bad rep for promoting unrealistic standards of beauty. And now we have these companies working hard to make more “realistic” dolls to teach better values. But twenty-odd years ago, Madeline was waaaay ahead of you.

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Every time we saw a Madeline doll, we pulled up her dress to point out her scar. Was that an intentional outcome that the adults in our lives hoped for when they gave us Madeline? Maybe. Probably. I don’t know.

But now I’m all grown up, and I’ve got three scars on my tummy. And sometimes when I look at them, I think of Madeline.

When we’re kids and we get hurt or sick, we’re so freaking excited to tell people about it. We show off our band-aids, we tell the exciting story, we make you sign our cast, we brag about getting shots or taking medicine. Why? Probably because grown-ups are constantly praising us through any medical adventure. The doctor gives you stickers and lollipops for a reason. Your parents coo to you that you’re so brave and so good. A team of doctors and nurses work tirelessly over you while your main job is to sit still, and you’re the one who gets told “good job!”

Illness is universal. Everyone winds up on a medical adventure at some point. But the older you get, the more autonomous you want to be. Illness is like crying: it’s private. But humans evolved to cry when they need help, and keeping it behind closed doors is completely counter-intuitive. Same with illness. Illness should be something people come together over. You need praise and encouragement and pride to get through it.

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I should be wearing my bikini and pointing at my stomach proudly, saying “look at me! Look what I did! I was very brave and good! You’ll never believe what happened!” When you’re drugged up at the hospital, you get that child-like pride back. You never really see shy drugged-up people do you? Without inhibitions, most people recovering from a severe injury or illness act like it’s an exciting story to share. And it is!

Why do you think Madeline is so popular?

If, for any reason, there’s ever dolls made of me, I hope they all have scars. Madeline is doing a lot of good out there. I never felt like dolls were shaping my view of beauty and self worth… but 7-year-old me would be quick to tell you that her Madeline doll has a scar, and it’s really really cool.

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And that had to be good for my sister.

And it has to be good for me now.

Thanks Madeline.