Post-Wedding Depression is Real

When I first became engaged to my husband, I ordered all the wedding books, researched, and meticulously planned until I ended up in the ER with nerve damage. I was also pulled in all sorts of directions by my in-laws and family, who paid for the event. My planning season was an emotional rollercoaster, but I loved the planning part. I designed so many things and perused so many websites I can now call myself a wedding connoiseur.

After my wedding, in the 12 hour timeslot before I left for my honeymoon, I felt despair. I didn’t get exactly what I wanted. I didn’t even have a real wedding dress, but a white prom dress, because of low funds due to my medical situation. During this time I had become obese, and I felt I was no longer beautiful. I dreamt of being beautiful on my wedding day. Instead, I had a pixie haircut, a round face, acne and pale skin. There was, also, well, my new walking stick. During my planning season I had gone from abled to disabled.

The honeymoon provided another high, but immediately after coming home things turned south. Why didn’t I get to be gorgeous on my wedding day? Why had my husband never told me he thought I was beautiful during the wedding? Where was the romance? And most importantly, why couldn’t I walk on my own?

Growing up I was the little girl who played wedding in diapers. I was the ultimate wedding dreamer. But the bubble popped and here I was, married, unemployed and disabled. I was going to grad school in the fall after having to drop out due to developing lupus three days before my wedding. I felt worthless as a housewife.

When COVID hit I had a giant brain worm: a wedding planner for disabled couples. I wrote about 100 pages of it in two weeks, then fleshed it out with interviews from the community.

In trying to cope with the post-wedding blues, I turned back to weddings (one of my favorite things) to try to help people. It works best when I’m coming hard at it on the weekends or discussing it with my professors, who have taken an interest in the book.

The beauty, purpose, and creativity involved in weddings lit my brain up like a live wire. To see it POOF out of thin air, after its most important culmination, drove me to writing more seriously. I wrote about fashion, Post-Traumatic Stress Disorder, and my experiences as a newly disabled wife facing an unknown world.

If you found this because you’re feeling guilt about the post-wedding blues, you aren’t alone. You’ve definitely got a friend in me.

Self-Care For Fibromyalgia

woman receiving massage with pink border. text: "self care for fibromyalgia"

I’ve been off the internet for a while trying to figure out good ways to care for myself as I went through my latest pain flare and manic episode. With the help of my EMDR therapist, I came up with a daily routine, scheduled by the hour, for about 4 different tasks I could do, excluding morning quiet time hour.

I’ve been practicing a rough version of the routine for about 4 days now, and it really helps when the anxiety kicks in. Knowing I have something to do at all times is extremely grounding. In the back of my mind I do know I have something to do at all times, but having a printed out schedule for a visual cue really helps.

So, my biggest tip for fibromyalgia self-care is to have a broken up schedule, especially for days you don’t work, or to manage your work day.

Morning Quiet Time Hour

I have about 7 tasks I do in morning quiet time hour. That sounds like a lot, but they’re all in the same vein – spiritual and relaxing.

I begin by putting on some chakra healing music. Then there’s yoga, with a minimum of 5 asanas (AKA poses), each held for 10 breath cycles. After this I grab some water and I meditate for at least 10 minutes, maybe more, to a morning time meditation on gratitude. Then I do intention setting, a type of meditation where you place your hands on your heart and reflect on what makes you afraid, what gives you strength, and a spiritual power. The point is to find a word that comes to mind when reflecting on the spiritual power to center your day around. When you know your word, write it on a piece of paper and place it in a drawer or your pocket, and at the end of the day read what it was. Once I find my word, or intention, I write a gratitude list with the chakra music on and sit in the dark until the sun comes up. Once the sun is up, I grab a coffee and sit on my back porch with a sacred text to read and my journal to reflect in. The point of this last step is to grab the first 20 minutes of sunlight.

I do set an alarm every day to wake up before everyone else. Some might think this is pretentious or impossible, but I really do think with fibromyalgia personal quiet time is key to starting off your day right. Investing in yourself alone and having niches for yourself is paramount to cultivating positive energy that you will need to fight the pain off throughout your day. Sometimes putting in a little more effort at the start results in ease the rest of your day.

The Rough Schedule

7AM is breakfast and more coffee. I mix up writing, laundry and job hunting until 11AM, when I hop in the shower and make sure I’m dressed with my hair and full makeup done for lunch. After lunch, around 12:30 I do “music in the dark” – either chakra healing music or my favorite tunes of the day for thirty minutes to an hour. At 1 to 1:30 PM I start continuing education. I have a few free Udemy courses on web design and writing I’m taking, and I spend this time until 5pm with a few music and writing breaks. It’s time to cook dinner at 5. After the family finishes at 7, I either hang out with a friend over Zoom or read a book and do a DIY home spa. Lastly, I finish the day with a relaxing meditation. I’m done by 9:15, and it’s off to bed.

DIY Home Spa

I’m big on physical pampering to fight fibromyalgia. I like to feel physical joy, and I take pride and pleasure in grooming myself. This is why I put on makeup every day and do my hair. Another thing I like to do is take a large tupperware container, big enough for both my feet to be submerged in water, and put a kettle of hot water (not boiling), 2 cups regular temperature water, 1 cup lavender epsom salts, 1 cup coconut oil, and 10 drops eucalyptus essential oil in it. I have a little space of the house to myself and a comfortable chair. Then I turn off all the lights, light a candle and soak my feet for 20 minutes while reading a light, fluffy book and listening to my current favorite music. If you do the foot soak, be sure to put lotion on your feet afterwards!

The alternative variation of my nightly home spa is a epsom salt bath without the coconut oil and two cups of epsom salts.

How to Feel Gorgeous on a Bad Pain Day

Bring the spa to you on a bad pain day when you have chronic illness!
Disclosure: Bear in mind that some of the links in this post are affiliate links and if you go through them to make a purchase I will earn a commission. Keep in mind that I link these companies and their products because of their quality and not because of the commission I receive from your purchases. The decision is yours, and whether or not you decide to buy something is completely up to you.

I’m a big believer that you should feel fabulous all the time, even if you don’t think you look it or feel it. As someone with a chronic illness, particularly a stigmatized chronic illness like fibromyalgia, this can be hard. A large obstacle to me feeling like I’m gorgeous or believing I’m fabulous is when my pain levels are high. Nothing can make me hate myself more when my body leads me to believe it hates me – even though from a logical standpoint, I know it doesn’t.

Removing myself from my chronic pain is impossible on bad pain days, nor should I do so completely. But there is a way to be friends with yourself and your body to feel gorgeous on a bad pain day with chronic illness.

Listen to a lighthearted audiobook

I especially enjoy Rainbow Rowell’s audiobooks, and right now a favorite is Eleanor & Park. A good, girly audiobook to transform me into the Chronic Illness Warrior Princess of my dreams is just what I need to feel gorgeous on a bad pain day.

Bestsellers to help you build your reading list.

Soft, fabulous blankets

Help your body feel gorgeous with luxury fabrics in – and this is important – your favorite colors! Looking at your favorite colors will remind your mind of pleasant things, and the wholesome, needed comfort of the blankets will bring your body back to a sateen Earth, where you are queen of your own world. A mind-body tactile connection is perfect for conquering all kinds of chronic illnesses and the pain that comes with them.

Stick-on nails

I’m the kind of girl who has to have her nails done, but was a budget bride and is a thrifty wife short on cash. Any day of the week can be manicure day with imPRESS Stick-On Nails available on Amazon or at your local drug store. Even on my worst chronic pain days, with swollen hands, I can maneuver these easy to use press-on nails for a glamorous from the spa manicure. (They’re better than the spa manicures I’ve gotten, honestly.) If one falls off, simply pick it up and gently press back on.

Scented Lotion

Lotion is one of the many ways I cope with chronic pain and anxiety. I’m a big believer in aromatherapy, which will be outlined further below. My holy grail lotion is Dream Cream from Lush. It’s lightly scented with rose water and is a cult favorite for those with eczema and psoriasis. The lotion is extremely decadent and creamy, making you feel as if you deserve this luscious treatment. You do, my fellow Chronic Illness Warrior Queen! This is an excellent, simple way to feel gorgeous on a bad pain day.

Bring the spa home with these skin care products.

Candles

Bring the outside in or travel to exotic destinations with your candle scents of choice, or if you are sensitive to smells, simply watch a flickering flame. When my chronic illness keeps me from traveling I love to imagine a high desert sky with a tuberose scent or trekking across Morocco with sandalwood. Please note that like unscented candles, there are also unscented lotions to help you feel safe from migraines and luxurious.

Create Your Own Story

If you absolutely can’t move or get out of bed because of a flare from your chronic illness, record a video of yourself telling a story about your day from your imagination. Perhaps you are an enchanted knight, a princess in disguise, or a fairy queen out for revenge. Or maybe you’re just out for morning coffee. Make it as simple or grandiose as you want. Maybe just vent! Be your own best friend. It can be lonely trapped inside because of fibromyalgia, lupus, rheumatoid arthritis, or any other chronic illness imaginable.

Remember, it’s just one day.

No matter how long you’ve been in a chronic pain flare, don’t let your mind extend the pain into tomorrow. We only ever have now. Feel what you feel now, and honor yourself by saying, “I’m in pain, and I can handle this,” or if you can’t believe that, try “I’m in pain, and I am not alone.”

My Chronic Illness Warrior Queens, we are never alone when we have bad pain days. We find fabulousness in ourselves and in each other.

Remember you’re gorgeous,

M. O’Shea

Why Body Positivity is So Hard For Chronically Ill Women

I had my first EMDR session yesterday, and it went… badly.

In EMDR one of the first things you do is create a safe space for yourself, and I could not visualize myself as I am in that space. I kept seeing the old me, the beautiful former model me, and I began to sob.

As someone who attempts to champion body positivity and beauty is every-ability, I was ashamed at my reaction. I knew that my issues ran deep, but I didn’t know they were this invasive. I saw the girl who I once was in my head and longed to be her. I felt that she as lightyears away, a completely different person from me, and this person existed only a year ago.

Grieved by the fact that I was two different people in such a short amount of time, the tears came. Pain shot up my esophagus, and my shoulders ached.

What’s important to remember is that I am a completely gorgeous, unknown sized, purple haired, green eyed vixen with glittery pink catseye glasses. My double chin? That is fucking gorgeous y’all. My acne? Sexy as hell. My swollen hands and legs? Hot, even if it is part of my disease.

My therapist taught me the Vegas Nerve Stimulator for times of distress, and I must say, it works. She instructed me to put my thumb on my clavicle and my other thumb below my rib cage, and silently repeat to myself “I am a beautiful human being.” I almost believed it, which was better than being in the negative hit points.

I am sexy as hell, and I believe it.

So, why did I have this problem? Why do so many women who go through life altering events, and body altering events, have this problem?

As women we are taught we are our bodies, and that our bodies do not belong to us. Someone else gets to decide if we are sexy as hell, not us. And if that is decided, they have the opportunity and the right to act upon their urges.

But at the same time, beauty is a sacred thing, like art. I believe all life is a form of art, which is a reason why I enjoy painting and drawing nature. There is inherent divinity, and therefore beauty and light, everywhere and in everyone.

When a woman becomes sick, it’s as if that divinity and light is becoming assaulted, because society says sick isn’t beautiful. But real beauty is still there. No other person can negate her divinity and inner light, even if she becomes bitter.

I’m here to tell you to all my ladies down with the sickness, you never lost your beauty.
Now I’m reminded of the Alanis Morissette song that goes, “I’m sick but I’m pretty, BABY, and what it all goes down to my friends, is that everyone’s gonna be QUITE ALL RIGHT!”

My fellow gals, you are sick and you’re pretty, you are beautiful and divine, own that acne, own that messy hair, YOU ARE SEXY AS HELL.

Style for Spoonies

Style for Spoonies

Please note that this post is intended for personal empowerment, not to push anyone into a mold. Style does not equal fashion, as will be discussed later in this post.

My goal is to let everyone know there are parts of themselves they can still have fun with, even with chronic illness. I hope I do not miss the mark.

I am a certified Girly Girl ™ and Chronic Illness Warrior Queen. It is my duty as a feminine chronic illness warrior to have some fun and write about something that tickles my fancy, which is how to develop a personal style post-diagnosis.

What is style, and what does it have to do with chronic illness?

Paste Magazine outlines style as a sort of essence or tone  to a person or thing, like food or writing. When a person becomes chronically ill, it is easy to lose their essence. So much of how daily life is lived must be changed. Everything from food, speech, walking to clothing choices must differ due to health conditions. But the essence of who a chronic illness warrior is, who you may be, dear reader – must not change. It must adapt.

Why should people with chronic illnesses care about style?

Firstly, a person with a chronic illness does not have to care about or prioritize style! I certainly don’t 5 out of 7 days out of most weeks. 5 days is a good week. However, when I do have the spoons to waste on style, I do feel better, and I am all about feeling better. I would like to make other chronic illness warriors feel better too. If you, as a person with a chronic illness, believe you would benefit from a silly cathartic article written about style for spoonies, please read on.

Types of Spoonie Style

The Lounger

If you are a certified pajama queen and live strictly for comfort, go you! You are putting your health first. This is good! No need to feel shame here, spoonie fashionista.

The Yoga Pants

There’s a lot of fun you can have with yoga pants. Yoga pants are basically the new blue jean. Once again, you’re practically street style honey.

The Leggings and Flowy Shirts

This is a definite style many musicians and bohemian ladies rock. Nothing to be ashamed of here, my chronic illness warrior princesses.

The Big Dresses

I don’t know if it’s just me, but hey soul sister if you’re reading this! Do you suffer from rib cage pain? Is your stomach and lower body in too much pain for yoga pants or leggings? Welcome to the Dress Mess tribe!

Everybody Else

Of course, this list is not exhaustive. There is no one way to describe the many ways women with chronic illness dress, and it’s usually function over form. This post aims to put a little form to the function, acknowledging form is less important than function, but can be used at times to add some style, or fun, AKA essence.

The Fab Fibromyalgia: My Chronic Illness Makeover

Exhibit A: Myself, the Spoonie Bard.

I had always been into rockabilly and retro fashion, a bit of a throwback if you will. My street style had always been a bit dark, glittery and rock and roll. Lipstick was always my cosmetic of choice as I had eye allergies.

Before my illness, I wore ripped cutoff booty shorts, complicated lace and tulle black structured blouses tight under the bust, combat boots, dark wash skinny jeans, a full face of makeup, thrifted motorcycle jackets, clear contacts, and a short pixie haircut I blow dried with a hair dryer and straightened with a flat iron every day. Each morning I showered, shaved, and applied fake tanning lotion. My hair was always colored.

At the core of my look was an essence, or style: edgy that said “I’m here. You can see me and judge me immediately so my anxious mind won’t go on a worry trail imagining all the mean things you’re saying in your head. I know you’re noticing the purple hair, the fake bake, the eyeliner, and the combat boots.”

Now, let’s look at me after  chronic illness.

After chronic illness: pixie haircut styled naturally curly or straight with a hot air brush, natural brunette hair color, tortoiseshell vintage cats eye glasses, loose fitting T-Shirt dresses in darker colors from Old Navy, vest cardigans, tall chestnut riding boots, ASICS sneakers, grandpa sweaters, an investment black pleather Guess jacket with gold details, knit polka dot dresses and shirts, flowy knee length skirts, and a bold lipstick color. I am currently pale as a ghost and hairy as a horse.

The current essence screams 1950s librarian to me. A librarian that one day, in January, hopes to have purple hair again. Still, it’s different – wearing my hair curly makes me look like I have hair from the 1920s and barely an inch long. The call of “look at me so I know you are first” still stands. I still have an essence, even if I can’t wear pants anymore. Despite chronic illness, I still have a style.

How to Develop a Style After Diagnosis

  1. Decide what you want to say when you enter a room

Is it “You saw me first and I know what you thought?” Are you daring and bold in this manner?

If so, experiment with a bold lip color or eye shadow. Which one of these you choose depends on if you have eye problems like I do (I suffer from ocular migraines and every allergen imaginable).

If you want to tell someone you are glamorous, invest or thrift for good accessories. A luxury handbag, jacket, jewelry piece or scarf can go a long way to dressing up yoga pants and a T-shirt.

2. How trendy are you?

And, generally speaking from experience… Trendy clothes are far less comfortable.

This determines what era you’ll set yourself in, and how up-to-date on fashion trends you’ll be. It also helps determine a budget, because if you’re trendy, you have to buy clothes more often!

Going for a more classic, timeless style means buying less clothes over time, unless you suffer from body fluctuations like me. However, generally knowing what you like makes it easier to shop online or at a thrift store once you know whether you’re more dramatic or low key.

Trendy vs. classic helps determine what type of fabrics you buy. I like to thrift for Old Navy knit dresses. These are rayon cotton or jersey knit dresses with a polyester blend. Generally I find these fabrics are gentler on my skin than the tulle or lace I used to wear. I aim for different patterns and polka dots in different colors. However I am a polka dot and not a stripe, and you may be a stripe; do as you wish girl.

Always choose fabric over looks. That sequin shirt is going to really rub you sore. But I guarantee you a jersey knit top with the right pattern or embellishments that do not stick up will treat you right.

3. What are your limitations, and can you have fun with them?

Do you use a mobility aid? Do you need to wear glasses? To wear pants or not to wear pants? Can you only wear pants?

If you use a mobility aid such as a cane, consider something elegant or antique if you’re female. To find one of these, I suggest eBay. I recommend The Disabled Diva’s Six Stylish Canes to Keep You On Your Feet for more direct references. If you’re partial to Ireland or Irish folklore, I once used a shillelagh as a mobility aid. They are available on Amazon.

As for glasses being trendy these days, there are so many options to appear on point. I prefer cat eye because they make me look more sophisticated and slim my face, and I cannot wear contact lenses. Now I will refer you to Zenni for an affordable range of glasses frames to help you find the right pair. On Zenni you can upload a photo of yourself and do a virtual try-on.

Assess whether you can wear pants. Pants are a nope, even leggings and yoga pants in my case. I can wear yoga pants around the house, but I can’t even go out my front door to get the mail. However, if you pants the pants, you pants the pants, and this is well and good. Pants the pants.

I am not anti-yoga pants or leggings by any means, however, I cannot personally wear them. I do know that folx that can wear jeans should check out Maurices. They are the only jeans I can wear when the temperatures drop waaay down low. Maurices comes in a wide range of sizes, are incredibly soft, and do not press on my hips to aggravate endometriosis pain.

Do you need to wear sunglasses? A spoonie guy or gal can really have fun with this. Designer sunglasses or sunglasses that look like a million bucks for cheap off of Zenni to create an ensemble can really help create a wardrobe in and of itself.

4. What is your hair texture, and how can you live with it naturally?

I recommend going to a highly rated barber shop in your area for help in regards to this matter if you need a haircut. Curly and wavy hair can look good short in the hands of a skilled barber even if you are a female spoonie. It’s also easier to take care of. Be sure to pay attention to how they style it at the barbershop and ask questions, such as “What are drug store dupes for this product?” if and when they try to sell you a salon product. Be persistent if they try to tell you there aren’t any. Believe me, there are.

In general I am more in favor of short hair for female chronic illness warriors because it is less likely to become matted in the unfortunate event of poor hygiene. If you find yourself going a few days without a shower and aren’t getting second or third day hair, beanies and other cute hats are your friend.

For tips on how to care for your hair with a chronic illness, check out my post, The Spoonie Girl’s Guide to Personal Care. These are good tips for men and non-gender conforming as well.

Conclusion

It is possible to cultivate a personal style post diagnosis if a spoonie so wishes, but it should not be expected nor should it be prioritized. I wrote this for fun as a silly girl post, though folx not identifying as girls are welcome to use this as well.

Now, a recap:

Pocket full of starlight: You can have fun with your spoons if you so wish.

Pocket full of darkness: Fun costs spoons.

Use your spoons wisely!

The Spoonie Girl’s Guide to Personal Care

Disclosure: Bear in mind that some of the links in this post are affiliate links and if you go through them to make a purchase I will earn a commission. Keep in mind that I link these companies and their products because of their quality and not because of the commission I receive from your purchases. The decision is yours, and whether or not you decide to buy something is completely up to you.

This is a basic guide of products I use as a woman with chronic illness to help keep myself looking 2% decent, instead of 0% decent. Some of these products have saved my spoonie life. In this blog I talk much about body image and self-esteem, so I decided to write a post about how to cultivate that with easy things I do on good days. These are the bare minimum steps I do on good days when my chronic illness lets me. I will include links to Amazon, because what chronic illness warrior doesn’t love Amazon?

First, please acknowledge I have oily skin and short, curly hair cut into a pixie. I typically wear the pixie natural so I will include ways to wear your hair natural and ways to straighten it (the easy way!).

1.Jinri Hot Air Brush

Jinri 1inch Hot Air Brush

A hot air brush is basically an electric hairbrush that acts as a hair dryer, straightener, and brush. I use the Jinri because it is 1 inch around the barrel which is good for short hair. All you need to do is get out of the shower, brush your hair with this, and your hair will be silky smooth like a salon blowout. If you have longer hair, I recommend the 3 inch Revlon Hot Air Brush

The Jinri is about $35, while the Revlon is around $55. Those of you immersed in the beauty word may be familiar with Dyson and Drybar, but those cost hundreds of dollars. Spoonies generally are short on cash with all of our medical expenses, so I want to make this list pocket-friendly.

2. Cantu Shea Butter for Natural Hair Double Combo Shampoo and Conditioner

Cantu Shampoo and Conditioner

This is only for ladies with curly crazies! As a curly haired vixen, this is what I use on my hair every day. It’s great whether I want to use my Hot Air Brush or wear it natural, which I will give a tutorial below. If you want to find this in person, the Cantu Shampoo and Conditioner can be found at Walgreens and CVS.

3.    Cantu Shea Butter for Natural Hair Leave In Conditioning Repair Cream, 12 Ounce

Cantu Leave-In

I always put the Cantu Shea Butter Leave-In Conditioner whether I use my Hot Air Brush or not. Because I have a pixie, I use a dime’s worth on one finger and run it through my hair. This stuff is powerful! When I want to wear it natural and air-dry, I use the same amount, and run it through my hair. Then I brush it while wet. Next, I take sections of my hair and twirl it up into twisted sections with my fingers to hang loose in defined locks. When I do this, it looks like dread locks when it is still wet. Then I let it air dry, and I receive perfect ringlets. Just make sure you don’t use too much of this – if you have chin length hair, it’s okay to use two dimes on two fingers, shoulder length, a penny. Beyond that never use a glob because I haven’t had shoulder length hair since 2005.

Another tip is that if you don’t want to twist your hair and need to go to bed, is to use the prescribed amount, brush your hair while wet and wear your hair in braids while sleeping.

4.    Neutrogena Oil-Free Acne Stress Control Triple-Action Toner, 8 Fl. Oz

Neutrogena Oil-Free Stress Control Toner

When I get out of the shower, I use this Neutrogena toner on a cotton pad on a good day. A very good day. It helps keep the acne under control. Now I’m no beauty superstar. I use this maybe once a day, twice a week, but it helps.

5. Pan Oxyl Pack of 5

Pan Oxyl Face Wash

Pan Oxyl was recommended to me as a teenager and it’s the only thing that does anything for my acne and body acne. This is for my oily skinned chronic illness warriors. Note the price tag on this – but it’s a pack of 5 Pan Oxyls, and they are really hard to find in real life. The only place I’ve been able to find them is some CVS. I used to apply this with a sponge, but I recommend simply using your hands. Sponges can hide bacteria.

6.    Neutrogena Oil Free Acne Facial Moisturizer with Salicylic Acid Acne Treatment Medicine, Pink Grapefruit Acne,4 fl. Oz

Neutrogena Pink Grapefruit Moisturizer is the only moisturizer that works for my spoonie oily skin. Yes, oily skin needs a moisturizer. Now I won’t claim to be high functioning enough that I do all of this every day – this is just for good days. Below I will show you how to accomplish these self-care tips with some chronic illness hacks.

7. Sit Down, If You Can, To Get This Done

Without purchasing anything, if your toilet is near a shower or a sink, sit with the lid of your toilet closed while you apply toner, moisturizer, or shea butter.

Vanity Mirror to put on a flat surface when using hair tools outside of a bathroom

If there are outlets near a chair or your bed, use your hot air brush there and place a small standup mirror where you can see it. Who says you have to use hair styling products in the bathroom? It’s dangerous and frankly, I never did before I became chronically ill.

If all else fails, and you need help brushing your teeth, consider a Sonicare and a backed medical stool to use in your bathroom if it’s large enough. The closed toilet seat hack still applies if you need help brushing your teeth (such as not being able to stand for any period of time) and cannot afford the medical stool or lack space.

Again, let me say that I too have days when it’s hard for me to get out of bed, brush my teeth, or shower. I hope I don’t sound preachy, these are just ideas for good days – days that are almost in the normal range, but us chronically ill girls don’t want to push it too hard and send us into a pain flare.

If you have any more tips, please comment below.

And now, a recap:

Pocket full of starlight: You are not your body, and you are not who you look like.

Pocket full of darkness: Looking good can take too many spoons.

The book of love

It’s almost a month left until my wonderful, creekside spoonie wedding, and I’m left with some thoughts.

Photo credit: Tauni Joy photography

Communication is hard. Love is hard. It can be scary. Love is a literal battlefield, but as long as you and your partner are on the same team fighting for each other, it’s worth it.

Photo credit: Tauni Joy photography

To take someone as they are every day is a blessing and a challenge. My fiancé has Aspergers and cannot smile on command, as seen in the photos. He can smile in real life. When these photos were taken a few months ago, he was coming down with shingles and feeling sick.

Photo credit: Tauni Joy photography

He tried his best to smile. The next day when the shingles appeared I drove him to the doctor despite my own illness showing up and not being able to drive very well. But I cherish these precious photos – the colors, the lights, the way we accidentally matched.


I ordered my engagement photos dress from Chic Wish, which I was initially afraid was a scam. But the dress came in, and it fit! It was the most unique thing I had ever seen, and matched my fiancé’s seersucker and khaki ensemble. Plus it made me feel beautiful.

It can be hard to feel beautiful in my new body. I looked through my old photos of selfies over the years and I looked at my model days. I look sicker than I do now – face all hollowed out, giant under eye bags.

And with that, a recap:

Pocket full of starlight: loving yourself and someone else is worth it though not mutually exclusive.

Pocket full of darkness: all the things they tell you about love aren’t really true. The truth you find comes for your own self.

Photo credit: Tauni Joy photography

Beauty can come late

Pink roses with pink text "Beauty can come late"

I have a jar of wilted roses in front of my happy light. It’s a wonder my office doesn’t smell like roasted roses, because the happy light has been on for about 12 hours. By the way, a happy light is artificial sunlight, and if you don’t turn it off after 30 minutes, it can catch fire. Maybe it’s the cold or maybe it’s luck, but my flowers (that I’ve had since August) haven’t caught fire yet. Or my house. It’s all right, it’s all good. Have a good time.

And I think about my roses not catching fire, and what it means from a metaphorical standpoint, because I catch on fire frequently. Right now my shoulders and right knee are on fire. But it’s all right, it’s all good. Have a good time. I guess. As far as mornings go this isn’t too bad even though my dad broke the coffee pot. I guess it’s a penny arcade.

But I guess if you’re a rose, even when you’re really dead, long dead, you’re beautiful. And I think about all the times I’ve felt dead inside for years, such as wasting my childhood and teenage years feeling empty inside – and not in the emotional sense. I couldn’t feel anything. Until I took yoga in college for three semesters, I couldn’t see anything. I wasn’t aware of the world around me. It was like having tunnel vision. What I saw was a laser focused object right in front of me in order for me to move. Other times, when I didn’t have an object, it was all a gray or black blur.

See, the beauty was still there for me, even after I came back to life and gained my vision back. The wilted jar of roses is still beautiful, though not socially acceptable, although my fiancé has not said anything about it.

I’m on The Latest Kate’s emailing list and today’s illustration really struck me. It was a pink dragon (!favorite! thing!) that read “Sometimes all we can focus on is making it through the day. And that is enough.”

Just make it through today and you can still have your unburnt jar of dead roses that are still somehow beautiful, and make it to the next morning to have a pink dragon cheering you on (and a plethora of other blessings).

So, a recap:

Pocket full of starlight: there’s lots of beautiful things to see in this world, even if you arrive late.

Pocket full of darkness: you might set your house on fire in the process.

Fibromyalgia pain and loving yourself

Your fibromyalgia body still loves you. Please love it back.

After pushing myself hard last week, I found myself in a fibromyalgia pain flare. Thankfully it lasted about 6 hours instead of a few days, at least that I can tell. Fibromyalgia is pesky in that it’s nearly impossible to tell how it will jump ya.

My fiancé and I were checking on our new house, which is undergoing renovations. We hired a contractor from my hometown to replace the carpet with tile floors. No way were we renovating ourselves with my fibromyalgia! By mistake one of the workers busted out the fireplace. Fiancé and I took this as a great opportunity to replace the builder grade tile that was there with mock marble. We will have a very classy house by the time renovations are done.

When we arrived at our house, we could tell that the garage door was broken, and the vent above the garage that leads to the attic was knocked out. My fibromyalgia pain level was manageable, but I was freaked out – had someone broken in? Our packing boxes were inside.

After going inside and finding the packaging intact, my fiancé climbed into the attic and nearly fell through the ceiling into the garage. I about died. My dad was about to go up there after him. My friend had come over with us to see the house expecting the renovations to be done, so we took her car to go to the nearest grocery store to buy duct tape so my fiancé could duct tape the vent back to the attic. I quickly developed fibro fog, so it took a while to find the duct tape even though the grocery store was less than 5 minutes from our house and about a block away.

Once we got back with the tape, I sunk into the couch with my friend. I hadn’t noticed it, but my fibromyalgia pain had crept up during the car ride over to the house. Currently my fiancé and I live in separate cities – when my fibromyalgia pain became severe, I left my apartment in the city and stayed with my parents. My father is a minister and very old school. Despite my fiancé and I being engaged with my father’s approval, he insisted that we not live together. My fiancé, the sweetheart (sometime too much) that he is, respected my father’s wishes as he wanted no bad blood. He is, after all, paying for the wedding.

Which brings me to another point. The wedding.

My fiancé helped me off the couch after he and my dad worked on the house for a few hours. On the car ride home, my fibromyalgia pain was so severe that I had to lean the car seat all the way back. The town I’m living in is 45 minutes from my new house. It’s a doozy with fibromyalgia pain.

During the last year, my fibromyalgia has taken from me something I never thought I had: my beauty.

I had once been a model for a photography class and a size 0 for all of my life until this past year, due to fibromyalgia and fibromyalgia medications. As I am a lady I will not disclose my size. Once I searched for plus size wedding dresses on Pinterest, only to find trolls commenting on beautiful women saying they were stuffed sausages, or too well fed, or that they ate too much. As someone who went from a size 0 to a size whatever, I can say it was not because I stuffed myself because I felt like it. My precious metabolism disappeared and the fibromyalgia drugs packed the weight on. And can all of us with fibromyalgia say pain eating is real?

But even when I was the social norm for beautiful, I never felt beautiful. I feel wretched looking back on how I didn’t love myself as a model, didn’t love myself as an Audrey Hepburn lookalike…

My biggest fear is that I will look at my wedding photos and cringe at how I looked. I am afraid of looking the worst I ever looked on the most important day of my life because of fibromyalgia.

But I know I have to love this body, this painful, plus size, chronically ill fibromyalgia body. It has carried me through so much. Even though I wasn’t aware of this before, it has always been there for me. Maybe I don’t register this, but my body doesn’t want to be sick, it wants to be healthy too, and it’s in this battle with me. She deserves my love and respect the way I deserve love and respect, whether I have fibromyalgia, a pain flare, a fit body, or not. Because we are not our bodies, and that includes me.

So, a recap:

Pocket full of starlight: Your body still loves you, even if you hurt. It doesn’t want to hurt you, it hurts too.

Pocket full of darkness: You and your body both hurt!