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Crohnie Chronicles #3: Flying with A Carry On Rather than a Checked Bag

Whatever you'd like to call it these days "in your bag," or flat out "baggage;" quite frankly I have zero dollars and zero cents to pay to check them, so I've stuffed all my emotional exhaustion into a convenient carry on. If you've ever packed a bag before you know that this is a contact sport. You will call on the strength of your ancestors and all of Popeye & Olive's children to complete this Herculean task.

But when you finally close that pandora's box, and calm washes over you, you know it's worth it.

Let's Talk About Emotions

In my last post, I talked about the emotional rollercoaster that comes with having a chronic illness (see Crohnie Chronicles #2: Year One) and I promised to talk more about overcoming those challenges. So here's what I've figured out...kinda...I'm working on it too.

Say It With Your Chest

There are times when I'm upset and have absolutely no clue why. With all the demands of school and adulting, sometimes you really don't have time to sit down and check in with yourself. Whether it is to someone else (a close friend, family member, etc.) or just in the shower, I take the time to verbalize the most basic or seemingly irrational fears. Once I say it out loud and validate my feelings, I am immediately relieved. Now, that doesn’t mean that I’m skipping through the rest of my day, but it’s a little like flipping on the lights and realizing the boogie man is just a bug.

Anthems

You need some feel good anthems; especially in the morning. I don't know if you've ever woken up in pain, but if you have then you know that it is basically counterintuitive to get out of bed.

My short list includes: Alive by Sia, Dog Days by Florence and the Machine, and oddly a few aren’t songs at all. If you’re not moved by music, I’d suggest you explore Eric Thomas - the Hip Hop preacher. He’s not your mama’s motivational speaker; he inspires through tough love and a little perspective (something I think everyone with a chronic illness could use once in a while).

Decompress 

At the end of the day, I'm the only one that has to worry about checking or lugging around my bag. In the past, I've made the mistake of pretending it wasn't heavy. After a full day of classes, I'd still drag myself out to an event with friends or a Scandal night. Of course it was fun and lighthearted, but it was absolutely not the venue to unzip my pandora's box, so I'd drag my bag back to my dorm.

Over time, I realized that somedays I had to be honest with myself about the weight of my bag. Rather than collapse under it at the end of a 19 hour day, why not take an early return flight and park it until I'm ready to unpack? I use all these analogies to say: you need at least one restorative, leisure activity and the discipline to use it routinely. For me that undoubtedly came in the form of Disney & Pixar movies.

Top 5? The Lion King, Pocahontas, Mulan, Lil & Stitch, A Bug's Life

Now, some people don't like animated movies, but you understand the concept. The idea is to protect your peace. I always found comfort in wrapping up in a blanket, like a burrito, and ingesting some positive, familiar content. As someone with a chronic illness and pain, I probably do this more than the average person; which at first made my feel "old," particularly during my college years. I wanted to create memories with my friends. How could I do that if I was folded up on my couch 3-4x a week (which really doesn't have to be a solo activity but I digress). Honestly, I didn't miss out on anything. In fact, by taking my time, I made sure that those events I did attend I could be fully present for.

I know, I know- TGIT is your favorite guilty pleasure and Shonda never disappoints, but the truth is the murder scenes, the strain of the social activity (a watching party), the heavy storylines (abuse, trauma, cancer) are all very harsh on your psyche. Whether you recognize it our not, it is draining to consume and when you're already running on E this may not be the smartest move.

Almost 5 years into my diagnosis, I can say confidently that I know when I can and cannot manage this added stress. Don't believe me? Test it out. The next time your friends invite you to an event, big or small, at the end of a long draining day or even week, listen to that voice in your head that says "I'm just so tired." You'll wake up the next day refreshed and ready to take on the day, instead of feeling groggy and even less enthusiastic than the day before. Who knows? You might even be in the mood to hit up the Caribbean Student Organization G-body meeting.

SUMMARY

So today we focused on our mental health. I like to think of these tips as holistic uppers. You'll have to make the time to detail your own regimen and tailor it to your schedule, but hopefully you can skip a few torturous steps using this guide. As you navigate your journey, you'll find that you naturally become more open with people who have chosen to remain in your life. I'm just hoping that sharing my experiences will catapult you to the eureka moments that took me years to stumble upon.

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On Layaway

If I close my eyes right now, I can still smell Speedstick

The smell lingers like it’s stitched to my receptors

And I receive it because I’m still not ready to let go of you.

I still hear the bass through the tip of my elbow balanced against the frame of the car,

Migos bumping as we Take Off.

I see a perfect constellation of beauty marks swept across your eyelid like a Vincent Van Gogh masterpiece

And I’m starry eyed.

I taste Moscato and a waffle-chaser, scrambled eggs with bacon and Mario Cart on the side.

In this limbo, all my memories are

Tangible

Love, I’ve found, is expensive

It puts a lien on your senses and demands to be paid in full.

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Don’t just defend your dark-skinned homegirl when some goon insults her; tell her, her melanin popping at breakfast so she knows it’s real

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Crohnie Chronicles #2: Year One

The reality of living your 20s with a chronic, autoimmune disease is different for everyone. It's different based on your status (whether you're active or in remission), your access to care and quality treatment, your family's and friends' ability to understand your limitations all impact your experience.

I'm 22 and I've been navigating the Crohn's minefield for 4 years. I was diagnosed during my first semester of my freshman year. Looking back on the situation, I'm pretty amused by my determination to ignore what was happening with my body. I was perpetually bloated, out of breath when I woke up in the morning, sweating and having night terrors in my sleep. And of course there were all the bathroom pleasures. To be frank I'm not comfortable enough to share those stories so just use your own imagination. I'd been eating very well; lean proteins, fish, salads, fruits and water every single day.

I'm talking clean eating and good chi all of that (mostly because I was not about to eat chicken fingers and fries everyday... I wasn't raised on that). Anytime that my symptoms worsened I would attribute it to the slice of pizza I'd had after committing to such a clean diet. But as that slice got further and further into my rear view mirror I became suspicious. Long story short, after basically poisoning myself with a cup of grapes, and one million lab tests I was officially diagnosed with Crohn's disease.

After that, I'd say I spent the better part of two years dealing with overwhelming guilt, feelings of inadequacy, and crying spells. Now I know most people with autoimmune diseases have experienced this, but I guess it's different in your 20s because of the recipients of that expression of emotions. I always felt calmest with my own family, especially considering that one of my loved ones shares the same illness. I didn't feel like I had to fake the funk, I could always just say I was sad and I never had to remind anyone of what I was going through. I'll admit, it was very self-centered, but this is not a part time disease and it really takes some time to adjust.

I felt guilt that my friends were being forced to be around such a loser who never went out, was tired and in bed by 10pm, and of course they couldn't get rid of me because that would seem shallow. They were trapped. For whatever reason it never crossed my mind that they could and did happily trot along to any party they wished, no, the fact that I had to turn down the invitation was some how more damaging to them than it was to me.

My feelings of inadequacy mostly came from having to leave school. While everyone was posting their grades, new internships, and moving forward in life I was stuck on the couch trying to stabilize an illness that no one outside of my family had heard of (Crohn's & Colitis have only recently become mainstream illnesses). We can all say stay off social media, but when you're at home cut off from everyone you just want to keep current. When I returned to school I really pushed myself that year to catch up. I was shocked to find that my body could not handle it. Tired was not the word, exhaustion didn't come close. My body simply shut down.

All the while, my well meaning friends were asking, "But what does it do? Isn't it basically a food allergy?" I was too sad, tired, embarrassed, and frustrated to try and explain all of the nuances and science behind the disease. Eventually I found the best way to explain was not to at all, but to kindly direct them to the Crohn's & Colitis foundation website where they could get an inkling.

In hindsight, the crying spells were obviously my outlet for all the stress I was enduring. In the beginning, it really did just wear me out, but I don't think I had a choice when it came to that. It would always happen at night when the guilt and inadequacy were stitched into my thoughts. Don't bother trying to force yourself not to cry it's therapeutic, and the longer you hold it in the more likely it is that it will come out when you're around people. Ughhh! I've experienced this first hand.

I guess this whole post is really about understanding that you're going to feel these things no matter how hard you try. I just want to remind you that you're not crazy because of it. Anyone in their right mind would have a reaction to their everyday life being turned upside down. You may feel like no one understands but things will improve if you take the bull by the horns. In my next post we'll discuss overcoming these challenges and developing a unique skillset.

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Unwilling to speak about anything but how gently this baby says “cheese” today. Thank you for understanding.

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The Last Bite

Three silver forks perch on the perimeter of a porcelain plate surrounding a golden piece of calamari and a deflated lemon wedge. ~Amber Emerald

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wrote this a year ago, and i still feel the damn same.

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Because you’ve wallowed within

darkness for so long, why didn’t I

realize that my light would be far

too unbearable for your dilated eyes?

Dimming myself for you is out of the

question. And the fact that you’d expect

me to do so proves that you recognize

how           lit       I          am.

−      Golden Child, XXV, Aliyyah Dizly

https://www.amazon.com/XXV-Aliyyah-Dizly-ebook/dp/B01MV1IDCY/ref=sr_1_1?ie=UTF8&qid=1486588774&sr=8-1&keywords=xxv+aliyyah

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I am not sunkissed. The sun and I, we made love. I’m left as dark as the tree bark he used to carve our names in lopsided hearts.

n.s. (via niasimone)

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Thank You, Mr. President.

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“A Thread of Tips” by Shelby

• #16 is missing but to find out more tips, follow her on twitter; be sure to thank her! 😁

disclaimer: check sites and tips before using at your own discretion.

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What Happened to the Pulp in Politics?

I wasn't raised on Orange Aid

My Jamaican mother was having none of it

"Eat an orange or if you want orange juice pour some Simply."

No, I wasn't raised on Orange Aid.

For those that don't know, that is Orange flavored Kool-Aid.

Something about it was always strange.

No pulp, and left your lips stained.

And when you drain the cup, at the bottom are crystals that look more like detergent than food.

"It's just sugar."

But shouldn't I see pulp?

A gentle reminder that the "Orange" in Orange Aid should refer to a fruit rather than an artificial color.

Seeded

And cultivated

And drawing on the minerals of each grain of soil.

In the pith, the soil has transformed into fibers that intertwine and piece together the segments and form a whole.

From that orange comes the sweetest juice full of comprehensive diversity

That's what my mama raised me on

But it's in his pores

Rather than aiding others, the Aid, sticky and unsavory, bleeds from his skin

He is not a victim;

He is the origin.

Under his nails, behind his ears, at the corners of his "shithole" mouth, lie sugar crystals concentrated enough to put you in a coma.

I wasn't raised on Orange Aid

And I'll never acquire the taste.

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#GrowingUpCaribbean

#GrowingUpWestIndian 

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Crohnie Chronicles #1: Everyday Survival Kit

*Scroll to the bottom for a quick and easy summary*

Let's cut to the good stuff. I was diagnosed with Crohn's Disease in November of 2013 after a rather dramatic episode of thrombocytopenia. I imagine whoever is reading this has already heard of Crohn's, but just incase: Crohn's Disease is an autoimmune, inflammatory bowel disease that most notably affects your digestive tract. This can cause severe pain, nausea, diarrhea, and a whole other host of symptoms and complications (many of which medical professionals will tell you are unrelated to the disease but we Crohnies have pretty much come to a consensus). Thankfully, up until this point, I have avoided hospitalization, but I'm on a mission to improve my quality of life. Anyone that suffers from Crohn's knows that you are constantly fighting your own body just to complete everyday tasks, and the threat of an earth-shattering flare is always looming on the horizon. For those of you that sum up Crohn's as a few extra trips to the bathroom per day, let me put it in terms you can understand. You nourish your body using food, your intestines are now inflamed and rejecting everything that you give to it, no food = no energy, no healing, no nourishment.

I'm now a MSN (Master of Nursing) student at Columbia University which comes with a heavy workload and tremendous stress. But I have things to do and people to see so I have to maintain some level of stability. At the start of a flare, when the pain, fatigue, and discomfort set in, I'd sacrifice my beloved edges to stop it in its tracks. Here are a few natural remedies that I use to keep me afloat.

Hot tea

In general, the heat helps to soothe inflamed intestines and break up gas to prevent nausea. I typically make moringa in the morning to help with the fatigue. Please be sure to eat something as moringa can cause low blood pressure. Believe me, I've come close to passing out. You can shop for moringa online or in health food stores that cater to the Caribbean population. Moringa is huge in Jamaica and my family members typically send a couple dozen boxes. Ginger root is fantastic for nausea ginger and turmeric root helps to reduce inflammation.

Corn meal porridge

This is straight out of the Yaardie Handbook. Corn meal porridge heals all. If you are suffering from IBD you may want to omit the cow's milk and use coconut milk instead. It gives it the same rich and creamy taste without the difficulty of digesting lactose (dairy in general is a huge trigger for me). Corn meal porridge adherea to the gut and intestines and protects it from the natural acids in your stomach. Now I love all my porridges equally but when I'm in a flare I lay off the oatmeal. The shelling from the oats can get caught in your intestines and increase inflammation.

Leave the Roughage Alone

You will have plenty of time to eat kale with your friends. For years, I've been baffled by medical professionals who encourage IBD patients to eat high fiber diets regardless of their inflammatory state. Now it's true that high-fiber, low-residue diets can be great for keeping your intestines inflammation free and your energy levels high. But during a flare?! It might actually be safer to drink bleach. The idea is to get the most nutrients with the leasst amount of digestive distress. And let's be real, if you're really having a flare your intestines probably don't need help getting emptied...just saying. Stick to broths, porridges, smoothies, scrabbled or boiled eggs, just to name a few.

The Guts of It All

If you aren't in the mood to read my fluff or you're a Crohnie who needs solutions quick, here's what you need to know:

Go to the nearest grocery or health food store get ginger root, moringa, and/or turmeric root. Pour hot water on the crushed root or moringa tea leaves. They will help with nausea, pain, gas, and fatigue.

Purchase a bag of yellow corn meal (my family lives for Indian Head) which can also be found at the grocery store. Since it will likely worsen your flare, fix your corn meal porridge without cow's milk. Coconut milk is an excellent substitute, but make sure that the milk cooks properly.

You'll want to drink most of your meals. Smoothies, soup broth, porridge have tons of nutrients and require very little work to digest. Give your stomach a break while still getting energy and nutrients from your food.