#LemonFaceChallenge for PCOS!

I’ve been nominated by a lot of awesome ladies to do the #LemonFaceChallenge for PCOS awareness! Many, many apologies that it took me FOR-EV-ER to get to it!

This fun, easy challenge was devised by the wonderful PCOSgurl, a twitter account you should definitely be following by the way. Why lemons? Because women with PCOS are getting a “sour deal,” and when life gives you lemons? Make lemonade.

But Queen Bey has the monopoly on the #carwindowsmashchallenge so let’s stick with the lemon face. Mine’s pretty tame. As kids my sisters and I would see who could remain the most straight-faced while eating a lemon, and not to brag, I was pretty good at that game.

Anyway, I do have PCOS. I’ve shared my story here before, but I’ll sum it up real quick: while being treated for endo, Poly-Cystic Ovary Syndrome or PCOS was mentioned in passing, but I didn’t learn much about it until we started trying to have a baby. One symptom of PCOS is irregular periods, and no period means no egg was released, which means no baby. Over two years, we tried a few kinds of fertility medication, at home injections to stimulate the release of an egg, and finally an IUI which resulted in our first son, Junior.

The upside? Hey, no need for birth control, right? Yeah no… because with PCOS, your body can release eggs, just you know… randomly. When it feels like it. Which resulted in our second (surprise!) son, Finny.

And of course, having both PCOS and endometriosis means that periods are god-awful (when they show up) ((which is completely unpredictable)). And frankly, normal periods are a “sour deal” all by themselves that half the world is cursed with. Let’s not play. I mean sure, it’s a beautiful, life-giving miracle, but so is labor and they both suck. So on top of having to have periods in general, PCOS is an extremely sour deal.

Also, having PCOS and IBS means that my relationship with food is rocky. Appetite comes and goes, and it’s really, really difficult for me to gain weight. I’ve been underweight for much of my life. I had a baby a month ago and I’m down to my “healthy” weight, but before I got pregnant I was 10 lbs underweight so

To find out more about PCOS and the lemon face challenge, check out PCOSchallenge.org . I hereby challenge all of YOU to snap a quick pic or video of you taking a big sour bite of lemon and link to your social media/blog posts in the comments!

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Seeing Invisible Illness in Modern Storytelling

Illness is portrayed in many modern stories, and most often, the illness is invisible. This allows for the hero or heroine to remain beautiful – something our society values above all else. The one thing these ten stories have in common is that somewhere in the plot, there is sickness. Illness often appears as an antagonist inside the hero, and only rarely as something the hero must come to live with. Sometimes, the illness is not the hero’s, but it belongs to someone the hero loves. In this case, illness is the catalyst that drives the action. Sometimes it is the villain who is sick, and the illness drives the acts of evil in the story. In any case, the story is somehow about illness, life with illness, or overcoming illness. No matter how illness is used, there are positive and negative social implications.

The Pros

There are many pros to the ways illness is used in modern storytelling. Having illness figure prominently in the plots of films and TV shows has one over-arching positive impact, and that, of course, is awareness. The fact that people hear about these invisible conditions is a huge contribution to the world of someone with an illness. It is much easier to find support and acceptance when people can say “Oh, I’ve heard of that.” Storytelling shows us the trials and tribulations of living with illness. Some may rise to the occasion, like the heroes, and some may become corrupted by it, like the villains. Either way, storytelling offers insight into the world of someone struggling with illness.

The Cons

As great as awareness is, there is also a lot of bad coming from the way illness is currently portrayed in modern storytelling. Obviously, the fact that many villains are driven by some kind of illness does not really paint a pretty picture of those of us who carry the burden of illness. Generally, ill villains become evil by stopping at nothing to get their “cure.” But even the ill heroes and heroines have some cons to them. In these stories, is illness too glamorous? Too melodramatic? Usually it is, at best, unrealistic. At worst, it beautifies being sick until it ranks with hubris or some other trite trait. You know the saying “Some are born heroes. Others have heroism thrust upon them.” This is the way that heroic illness is often presented. What are the implications of equating fighting illness with heroism? Is this a realistic view? What are the problems here?

How To Be Sick

By including illness in the plot of these stories, the author does seem to imply some kind of advice on how one should be sick. In some cases, the author is sick, and in some cases not. Generally, though, an image is painted of how a sick person “should” be. The archetypes are not realistic, and perhaps even harmful to real people who are sick. There are basically three types of sick people in stories:

  • –  The Hospitalized Angel – usually a beautiful and innocent female character who is totally helpless.
  • –  The Tragically Ill Hero – the one who stands up to fight their illness, usually alone, and usually triumphant. Generally finds a cure.
  • –  The Desperate Villain – usually sympathetic and male. Will do anything to find a cure to his illness.

How to Be Well

Inversely, as these stories offer advice, both good and bad, on how to be sick, they also offer advice on how to be well. There is really only one person in a sick person’s life in movies, right? Their hero. Their champion. The person who rides out into the sunset, vowing to find a cure. Sure, when a Western hero does that for his little sister, we all cheer. But there is one thing about this that is very destructive. Say you are a healthy young man, and you have started dating this pretty girl. You like her a lot, and as the relationship gets more and more serious, you find out that she has an incurable, lifelong disease. Suddenly, you realize that the world will expect you to be her hero. Can you devote your life to that? Do you want to? How terrible must it feel to know that anyone you get involved with will have to take that place – the sick person’s champion? Wouldn’t you rather be a Tragically Ill Hero, and go off by yourself to find a cure?

What’s the main problem here? This entire scenario revolves around finding a cure. Rarely, if ever, does a couple in a story learn to live with illness.

Change It

I want people to look at these stories and, after weighing the pros and cons, and examining the stereotypes, decide what parts of the story are valuable, and think about what would need to change. Stories about illness should convey illness realistically, and offer help or comfort to those dealing with it. Some of these stories may not need changes. Others may only need a small tweak. Others still may need to be rewritten completely or altogether thrown out. I want to get people talking, get people writing, and get more stories out there about illness. I want stories that raise awareness and bring light and hope back into the lives of those who suffer.

The Stories

Repo! The Genetic Rock Opera

Synopsis: In a dystopian future, the human race almost died out from an epidemic of organ failure. After GeneCo., a company run by Rotti Largo and his three children, begins financing organ transplants, mankind is saved…but when the repossession of organs is legalized, Repo Men begin hunting their patrons down and brutally murdering them to re-attain the organs.

Nathan Wallace works for Rotti Largo as a Repo Man after the death of his wife, Marni. Rotti, who also loved her, has convinced Nathan that her death was his fault, and uses this to blackmail him into being a Repo Man. Nathan and Marni’s daughter, Shiloh, has the same grave illness her mother had, and has never left her own house. She lives a very sheltered life. She has no outward signs of illness except hair loss, which she hides by wearing a wig.

When Rotti finds out that he has a fatal disease, he decides it is time to collect and exact his ultimate revenge on Nathan for winning Marni. He lures Shiloh away from her home, promising a cure. Shiloh meets him at the Opera, where it is revealed to her that her father is a Repo Man and a murderer.

SPOILERS (skip to next title if you want to keep the ending a surprise)

Not only that, but he has also kept her sick when he could have cured her – he wanted to keep her locked away at home, sick, to protect her. Rotti hands Shiloh a gun and tells her to kill her treacherous father. She refuses, and Rotti kills him himself. As she holds her dying father in her arms, she assures him that all is forgiven, and leaves the theater with her head held high, vowing to find a cure and be the master of her own fate.

How To Train Your Dragon

In a Viking world where dragons fly, a village lives in constant fear of the onslaught of attacks from wild dragons. Children are raised to hunt and kill dragons to protect the village. As a rite of passage, each child must fight and kill a dragon to be considered an adult.

One outcast boy, Hiccup, finds a rare type of dragon sleeping in the woods. Seeing this as his only chance to kill a dragon, he attempts to kill it. He finds, however, that he does not want to. He observes the dragon from afar, and realizes after a few days that the reason it is stuck in the forest is that it’s tail is injured and it cannot properly fly.

Hiccup begins to befriend the dragon, gaining its trust. He starts trying to train him, and at the same time, he works on designing a kind of fan to attach to his tail so that he may fly again. When the Village decides to send a crew to the Dragon’s island, Hiccup shows the youth of the village how to train dragons, and together they help save the dragons’ home.

SPOILERS

In the climactic battle, Hiccup is grievously injured. He ends up losing part of his leg and must build himself a mechanism to walk again. He and his dragon are rehabilitated together, both of them learning to live with prosthetic help.

The Amazing Spider Man

Peter Parker begins snooping for clues about his parents’ mysterious disappearance when he was a child. His hunt leads him to a scientist who his parents worked with – Dr. Connors. Dr. Connors has only one arm, and is working on a serum to help humans heal themselves the way lizards do. He tests the formula on himself, and mutates into a giant lizard-man who terrorizes the city.

Meanwhile, Peter is experiencing new mutations of his own, as he develops spider powers from a spider bite he got at the lab. He rises to fight off the deranged lizard doctor, and bring peace to the city.

Final Fantasy VII: Advent Children

Cloud Strife, an ex-mercenary, has been living in isolation after he came down with the geostigma disease. The geostigma is an epidemic that has been raging all over the world. When all the children with geostigma in town start disappearing, he reconnects with his old friends and comes out of self-imposed isolation to try and find them.

SPOILERS

Three mysterious men have kidnapped them and begun to brainwash them. In a clash of swords, magic, and muscle, Cloud and his friends fight them off and save the children. A cure is found, and Cloud and the children bath in a magical pool and are cured.

“Peggy’s Turtle Song” (King of the Hill)

Bobby Hill is diagnosed with ADD and put on Ritalin. (you can read my detailed analysis here)

“Junkie Business” (King of the Hill)

Hank Hill hires a new part time employee at Strickland Propane. When he finds out the man is addicted to drugs, he tries to fire him. The man finds a loophole in the law and enrolls in a rehab. Under the Americans with Disabilities Act, Hank can no longer fire him and, in fact, must actually make ridiculous accommodations for him. In response, the other employees self-diagnose their own disabilities and demand accommodation.

“Hank’s Unmentionable Problem” (King of the Hill)

Hank Hill begins having problems with constipation, and is extremely embarrassed about it. Out of concern, his wife Peggy talks about it with everyone. Hank and his family must bond together to overcome the medical problem, no matter how embarrassing it might be. (check out my video review of this here)

The Secret Garden

After loosing her parents in a tragic epidemic in India, Mary Lennox comes to live with her uncle. She discovers a house full of secrets, a very sick cousin of hers, and a garden that’s been locked up forever. Through curiosity and bravery, Mary opens the garden, frees her Uncle from his depression, and helps her sick cousin Colin to get well and walk again.

The Secret of NIMH

When her son falls sick, Mrs. Brisby must venture forth from their small home and unlock the secrets of her husband’s life and death to save her son’s life.

The Directive

When Lynne, an introverted college student who loves books and reading, is diagnosed with Crohn’s disease, her whole life is turned upside down. As she navigates the turbulent new world of hospitals and doctors, she realizes that she must come out of her shell and change herself and her life if she is to now live with Crohn’s. (check out my review of this amazing book here and read my interview with the author here)

Summary

It was actually quite challenging to find illness portrayed in modern stories, and as you may have noticed, I did end up including one story that is not exactly modern – the Secret Garden. I felt, however, that its inclusion was valid, as this book is considered by most to be a “classic” and is still widely read today.

I had a really great time putting all this together. I keep a running list of movies and books I come across that pertain to life with illness, though I was only able to used a few from that list for this particular project. Many of the stories were allegories for illness, and those would simply not work in this setting. Perhaps one day it would be fun to put together a sister collection to this one that is mainly allegories. But for now, I focused on stories that actually featured illness as a big factor in the plot.

I would have liked it if illness was the main driving factor in each plot, but I feel that a collection like that would feature only one type of story – the Tragically Ill Hero story – and it was very important to me to show a variety of ways that illness can be used. Some of the examples are wonderful and realistic, and others are stereotyped and beautified. I am glad I was able to find a good mix, because I think that people in general have mixed up feelings about illness.

(NOTE: I wrote this as a part of my final for my storytelling class back in 2012. What are some good newer stories dealing with illness? Leave your ideas in the comments below!)

Murder in a Public Bathroom– Just Kidding This Post is About Poop

I have a story to tell. It’s not the story of me murdering someone in a public bathroom and hiding the evidence, but I wish it was. That would have probably been less traumatic.

Anyone played Indigo Prophecy? If you answered yes, I’m sorry.

So let me take you back to when this actually took place: I was in college, living in a one-room apartment with my husband. I had decided to investigate my gastrointestinal problems, and my new gastro doctor needed a stool sample. Ok. So I scheduled a day to go to the diagnostics lab. I’m thinking it’s a lab, they do this all the time. I’ll go and do it there, just like when you do a urine sample. Right? Right?

No.

I can’t blame them for not wanting this dirty work done on the premises. But I don’t want to do it in my one-room apartment either. We don’t have an outside trash can, I’d have to transport everything to the dumpster. And that was one trek I didn’t want to make with this particular cargo. Plus, I was, ahem, prepared. I didn’t want to drive all the way home.

And at this point, I am still pretty naive about what all this will entail. Well, next door to the lab is a gas station. I think, this is an industrial restroom that has probably seen worse. I will go here.

And now let me just flip over to talking about murdering someone there because like I said, that would have been less traumatic.

Of course, when committing murder in a gas station bathroom, you’re going to be scared someone will walk in the entire time. So adrenaline levels are running high to begin with. You also pray it will be quick and quiet, but no matter how well you prepare, you just can’t be sure.

Once the deed is done, the real work begins: disposing of the evidence. There’s a lot more evidence than you might initially suspect. Even with an industrial-sized trash can and a near-infinite supply of toilet paper and paper towels, it’ll take time and craft to get it not only in the trash, but hidden and without staining yourself with any suspicious materials.

And once it’s all done, you must rush out and try to avoid turning your face towards any security cameras.

I delivered the goods to the lab and went home and took a really long shower.

I stand by the idea that this would have been just as traumatic at home. I would have had to tell my husband to just stay on campus and not come back until I give the word. A diagnostic lab should be equipped to handle this, really that’s the only solution I can come up with.

Am I just going to go radio silent and then post every few months about weird things like poop? Um… that’s not my plan, but I can’t rule it out.

More posts coming soon.

Sometimes People Suck

I love participating in WEGO Health’s twitter chats (follow @wegohealth on twitter to check it out). And each time, no matter what the topic that week is, the subject of losing friends seems to always come up. Chronic illness, whether physical or mental, tends to encroach on our social lives and that can bring out the worst in people. We don’t want to cancel plans or spend all of our time talking about our illness, but when we do, it would be nice to be met with understanding. Unfortunately, it can often break a friendship or even a romantic relationship.

Sometimes one too many cancellations causes a friend to give up on hanging out with you. Sometimes one too many suggestions to “think positively” or “try yoga” or “maybe if you just…” causes you to hit the unfriend button. Sometimes, after an awkward encounter with your illness, a friend or loved one “ghosts” you, falling off the face of the earth. Maybe they can’t deal with facing the idea of mortality when they see an incurable illness. Maybe their desire to “fix” you has made you feel unloved or unvalued, because as much as our illnesses don’t define us, they’re still a part of us. Maybe it was simply more baggage than they signed up for when they decided to be your friend/significant other.

It’s harsh. But it’s also true. Sometimes, people just suck.

A while back, I wrote a post on the story of Job, specifically looking at misguided attempts at “comforting” friends in hard times. Job is a bible story I think many people with chronic illness can relate to, and there’s verses that apply to losing friends as well.

Check out these excerpts from Job 19:

“He has alienated my family from me;

my acquaintances are completely estranged from me.

My relatives have gone away;

my closest friends have forgotten me…”

“My breath is offensive to my wife;

I am loathsome to my own family…”

“All my intimate friends detest me;

those I love have turned against me.”

When we go through something really tough, like an illness, sometimes it feels like everyone abandons you right at the moment you need them the most. Loved ones may be visibly drained by your experience, making you feel like a burden. When you stay home ill, it’s easy to feel forgotten. Illness is alienating. Healthy friends don’t know how you feel, and maybe you don’t know how they feel, either.

A more modern quotation that captures this can be found in the song “People Just Ain’t No Good” by Nick Cave.

“It ain’t that in their hearts they’re bad.
They can comfort you, some even try.
They nurse you when you’re ill of health.
They bury you when you go and die.

It ain’t that in their hearts they’re bad.
They’d stick by you if they could.
Aw but that’s just bull, baby.
People just ain’t no good.”

***

I know that it’s not everyone. I often say that, especially when it comes to dating, illness can be a good thing because it weeds out the insincere. At the end of the day, you’re left with people of heartier stock. True friends, true love. But when you care about the ones you lose, you don’t want to hear that.
Sometimes, people just suck.
Listen to some moody music, wallow in it, get mad, get sad, but then remember the true ones. Find them, because they’re out there.
But if you’re reading an article called People Suck, you’re not here for that, so yeah, people do suck. Most people.
But you don’t suck.

#spoonieragecomiccontest WINNER!

Alright, a month is up and we have our winner! Congratulations to Claire at Living, Being, Doing with Chronic Fatigue Syndrome!

I’ll be in contact with you soon to get you your prize!

Stay tuned for more posts about living with chronic illness, contests, reviews, and BIG NEWS.