"Invisible" Illness

“Invisible Illness”

I hate that term. I hate that it implies that there’s nothing visible about my illness, or the illnesses of many others. It’s an echo of doctors’ past “It’s all in your head”. It beats me down, and continues to gaslight me into believing that somehow, I’ve caused my own pain.

My illness is not invisible to me. Endometriosis affects me every day, even on a ‘good’ day. It affects the ones I love, because I affect the ones I love. I don’t bring it up for attention, or to make an excuse - I bring it up because speaking it out loud takes away its power to intimidate me into silence.

I can see my ‘invisible’ illness in the way I have to eat. To most everyone it’s weird and funny, but to me, it means the difference between being incapacitated and being a capable adult human. It requires responsibility. 

I can see my ‘invisible’ illness in the way I have to move. I long to stretch my legs and run, but I know that it causes flares that cause me pain. So I choose to hike, bike and walk - but I can’t run and that saddens me. 

I can see my ‘invisible’ illness in the way I dress. I joke about wearing stretchy pants and blousey tunics and dresses, but when you wake up a size 8, and a flare can make me swell to the size of someone 8 months pregnant, it’s a very real consideration. 

I can see my ‘invisible’ illness in the way I speak. Years of doctor’s appointments, of countless scares and worries, caused me to be precise, to be guarded, to measure every sentiment and what the reaction could be. The only way to be properly treated is to attempt to know more than the doctor knows. You must keep meticulous records and study every aspect of how your body is affected. Years of behaving like that, medically, and it seeps into your every day life. 

I can see my ‘invisible’ illness in the way I work. I look for jobs with flexible hours and scheduling, because I never know when the endo-beast may strike. Yet, I end up working more jobs than I should in order to make ends meet - and push through, trying to never miss a day, because to me, failing to function is admitting defeat.

I can see my ‘invisible’ illness in the way I love. The ones I love are the ones who have stuck around - through the good and the bad, the ups and the downs. They know that some days I can’t function, that I will be cranky and lash out. It’s not an excuse, and yet they still support me.

I can see my ‘invisible’ illness. The question is, when face to face with someone who has one of the myriad of ‘invisible’ illnesses, will you take the time not just to look, but to see?

#EndometriosisAwarenessMonth

How to be more Adultier

It has come to my attention that this weekend, I will have been out of college for three years, which really isn't that long in the grand scheme of things, but these years out of school have been almost as formative as the time I spent in it.

So here's what I've learned since graduation....

• Always carry a set of cutlery - If nothing else, at least a spoon. This is probably the most immediately useful piece of advice I can give you. When you are on the go, and you don't know when/where/how your next meal is coming from, you best be prepared to eat it. And because soup is cheap, but its something you really can't eat from your hands, you'll thank me later for insisting upon the spoon. No one wants to see you drink your soup. 
• Don't work for free. If you are putting in a full day's work, you deserve some kind of compensation. Make sure that if you are being paid in 'experience' that doesn't mean you are starving.
• If you work a job that includes 'housing', make sure your contract includes running water. You think I'm kidding. I am absolutely not kidding. I'm looking at you theater youngin's. Don't do summer stock if they can't guarantee that you won't have to use the toilet at the 24/7 Cumberland farms across the street at 2AM.
• Don't let money eat you. Don't be lackadaisical about tracking your budget, but don't let the price of things turn you off. Go to that concert, eat that dinner with your friends. The memories are worth more than the extra few bucks in your account. 
• Learn how to make your own coffee and tea. Be an adult. Make your own damn beverage and save money too. You don't need the sugar.
• Treat yourself right. Drink lots of water, make sure you get up and move (if you are in a sedentary job), make you take time to rest (if you are in a physically demanding job), Paint your nails, read books -- your mental well being is more important than anything else. If you are miserable with your job, why are you doing this job?
• Treat others right. Foster healthy relationships with friends and family. Volunteer. Don't judge everyone that you cross paths with. Negativity breeds discontent.
• Worry less. Things have a way of working themselves out if you work hard and do right by your life. 
• Eat more avocados. You can't be sad while eating an avocado. 

So there you have it. My list of advice that may or may not be useful to others. Do with it what you will, but most importantly: Put a spoon in your purse/briefcase/backpack right. now. 

Gluten and Dairy Free Mac and Cheese

Since posting this picture on my Facebook the other day, I've gotten quite a few requests for how to replicate the unattainable: actually delicious gluten and dairy free Mac and cheese. 

There's no nutritional yeast or kitchen wizardry going on. It's very simple, just a slow and careful process. 

My recipe here isn't super precise and it only makes enough to serve one, but it may be a starting point for your needs. 

I used corn noodles (the tiny seashells work the best for texture), about a cup - cooked however best you'd prefer. Follow your package but I find I prefer them slightly al dente.

The sauce is a cup of unsweetened Almond milk, 2 heaping tablespoons of dairy-free butter (I used organic earth balance), a half cup of daiya cheddar shreds, and (the big secret) a tablespoon of gluten free all purpose flour. I used King Arthur brand today, but there are cheaper ones 😊

You begin by heating up the almond milk over NO HIGHER than medium heat. Then slowly mix in and melt the butter and cheese, adding the flour when you have about half the amount of cheese melted. This is the secret, because it helps thicken the sauce.

Drain your pasta when ready, and then add it back in the pot. Pour the thickened sauce over it, keeping the pot over low heat and mix until thoroughly coated.

Serve asap and enjoy the goodness you have missed!! Revel in the creamy, cheesy, nirvana.

Hope it works out as well for you! Feedback is appreciated, let me know how you've adapted it!

Thinking out loud (minus Ed Sheeran)

Sometimes it can be hard to define what you want. You may know, inherently, that you are craving, longing, for a change. How do you determine what that change is? Sometimes we don't get a choice, change is thrust upon us and we must either adapt or abandon ship. Sometimes we get swept up in the motions and find that change has occurred without us even noticing it at all. 

I often find myself in the liminal world of inbetween change. It's not often pretty or sane. Typically it involves a little bit of insanity and a whole lot of mess.

When you are young, they tell you that it's part of being an adult. They don't warn you that even when you are an adult, you may still not be qualified to deal with whatever life is throwing at you. 

How do we move forward, accept the changes, for better or for worse? I don't know. There are things that are imminent in my future, short term, long  term, permanently, that have to be addressed. Procrastination becomes denial. And denial is never becoming of a young lady.

So I pray. I try and keep the faith that the cosmic plan is a far better story than any I could write for myself. And yet, sometimes my knees knock, I start to shake whenever I see my future walking down the driveway to me. Anticipation only becomes acceptable when the outcome is positive. So this year, the next year, however many I've got left, I've got to learn how to focus on my many optimistic outcomes and try to push the potential for disappointment and failure out of my mind.

It may take some faith, trust, pixie dust, but life goes on and I have rambled far  too long here for now. 

You Can't Get Enough, But Enough Ain't the Test

When I was 15, I had it all figured out. 

Obviously, if I did, I would have two Oscars by now. 

Where are my Oscars?!

In any case, have you ever been so sure of what you wanted,  pursued a dream so relentlessly, for almost 10 years, that you've found you are no longer sure thats what you want? Don't get me wrong, I still want that dream very much. But I am convinced that the conventional method of obtaining it is not for me. 

Its funny how words can change their meaning - not literally, but how you interpret them. I used to look at compromise like a dirty word. I was focused - I did not compromise my goal. Nowadays, I don't feel like I dreamt big enough. Why can I not have my cake and eat it to? Compromise - I will relentlessly pursue my dream, but I can have enough time to focus on friends, family, relationships, faith -- I don't have to work every waking hour of the day on becoming a top notch costume designer.

Sacrifice, my dear starving artists, sacrifice. We must take pieces of our souls and sacrifice them to our art. For me, I prefer that sacrifice to not be moral or mental. And honestly, I'd simply like to go out to eat once in a while and not scan the menu for the lowest price first. 

I've learned that I shouldn't have to work every evening and weekend for next to no money. What does that get me? Taking every gig, treating them with equal importance, building the resumé... what good does that do if I am burning myself out and letting life pass me by? When you begin to lose passion for your favorite occupation, it is painful to your core. When you wonder, can I do something else? I've been working in this field for so long, is it possible to take a break, pursue something else for a bit, until I recharge my heart?

I've got a birthday coming up, and even at a young age, I realize that I can't waste time. There's not enough time in this life to be spending it with heartache, tears and working for pennies. Compromise - I can work on my dreams, and work on having the life I want as well. 

I have faith that it will all work out well, if I give it up to Him, and focus on being a human again - not a costume-design robot.

I don't know where I'm going from here, but I promise it won't be boring. 

David Bowie (and Me).

No one start singing that Sara Bareilles Song.

Being brave is not easy.
In fact, the most amazing people to me in the world, are truly brave men and women.
There's no doubt that there are different kinds of bravery.

There's bravery in be willing to lay down your life for your country.

There's bravery in be willing to lay down your life for your God.

There are men and women missionaries in Iraq right now, with full knowledge of ISIS baring down on them, ready to be DECAPITATED for their faith -- they have full ability to leave or denounce their beliefs. That's pretty damn brave.

There's bravery in being honest, in openly sharing your feelings - whether it's as simple as telling your friend she's being silly for worrying about a color of candles, or as complex as revealing a side of yourself you never show, with your shortcomings and all.

 There's bravery in listening to someone tell you horrible things about yourself and still being able to respond with love.

There's bravery in holding someone while they cry and telling them things will be okay, when you yourself want to cry.

There is bravery in accepting yourself for who you are. There is bravery in acknowledging that there are things about yourself that need to be fixed. There is bravery in realizing they cannot be fixed on your own.

There is bravery in acknowledging that things are bigger than you are. There is bravery in putting someone's welfare ahead of your own.

There's beauty in bravery. Being brave requires showing that you care a great deal. It means being vulnerable, emotionally or physically. It is scary and difficult.

The greatest things you will ever do are the bravest things you will ever do.

"There are all kinds of courage," said Dumbledore, smiling. "It takes a great deal of bravery to stand up to our enemies, but just as much to stand up to our friends. I therefore award ten points to Mr. Neville Longbottom." 

Things They Don't Tell You When They Say "Never Eat Gluten Again"

When I found out last August that I could no longer have gluten, my main thoughts involved bread and pasta. Little did I know, I would feel amazing and much healthier, despite my lack of wheat-laden products. That being said, I'm very happy I'm gluten-free. I'm happy there are so many options, and I'm happy I have friends and family who are considerate of my needs.

But its not an easy life. Without careful and due diligence, you can screw up.

Screwing up is easy to do. You misread a box of Captain Crunch and rationalize that "oat flour" is probably safe. It's 730pm and its the only cereal in the house. You're starving. Look at that little Napoleon-wannabe, he's practically begging you to eat that crunchy goodness. The box doesn't say "contains wheat", and oats don't have gluten.

It's safe right?
You rationalize that it probably is. You'll be fine.

[What you don't know during this process, is that "oat flour" can actually contain up to 50% wheat flour without having to report it... and it does just that.]

Gluten tastes good.
Like daaaaamn gluten, can I has your numbah? Your momma must be a meter maid cause gluten, you've got fiiiiiine written all over you.

It takes a few minutes, but if you have no gluten in your system and you suddenly eat gluten {especially if you medically cannot have gluten}, you STRAIGHT UP FEEL LIKE DEATH. Monty Python better swing by with the "bring out your dead" skit, cause that's where you go. If you're like me, you get a massive headache, stomachache (and I'm freezing cold... in the middle of summer.) All you will want is your bed and to go to sleep. You might even cry a little for no reason.

Once you taste blood, you want more.

Here's what I don't get about "bandwagon-jumping" Gluten Free People. If you CAN eat gluten, WHY WOULDNT YOU? I'm here, sick and miserable because I ate gluten, and yet.... I want more. I would eat that whole damn box, with that sick little naval bastard smiling maniacally all the while, if I wouldn't die. And half of me irrationally wants to go do that right now. So, now, after months of not screwing up, and almost being able to pretend that "rice bread" and "corn pasta" are just as good as the real deal, its back to stage one of craving all that gluten.

So please, if you can eat gluten, do. Be my gluten proxy. I'll be over here, in a blanket in the corner, trying not think about Captain Crunch