2 Traditionally Bridal Things I Didn’t Care About As A Chronically Ill Bride

Bride with sequin shoes. sign overlay 2 Traditionally Bridal Things I didn't care about as a chronically ill bride spoonielifestyle.com

When I was engaged to my husband, I was in the process of being diagnosed with lupus and fibromyalgia. During what should have been my time of joy, I was ridiculously sick. Therefore my wedding, although I tended to it the best I could, did not have all the typical girl-things most brides obsess about.

To most women, your wedding day is your most beautiful day – and that means your physical self. I had some radical self-acceptance when it came to my appearance. There were just some things I couldn’t control, some things I had no energy to control, and some things I knew would pain me to control to the point where the gain wasn’t worth the cost.

I wondered if other chronically ill brides had similar experiences, so I wrote this short listicle.

1. Losing weight

At the time I was a vegan, swimming for 2 hours each day, and doing 45 minutes of yoga. By the time the month of my wedding had rolled around I had astronomically gained weight from pain meds. I was also bed bound and couldn’t walk like I used to. When you’ve gone from standing unassisted to needing a cane, you’re gonna nope out of doing crash dieting, binging, and sacrificing your hate-selfies to the weight loss gods. I bought WalMart spandex to get into my dress and got on with my life.

After the wedding, almost immediately after the honeymoon, I was also diagnosed with hypothyroidism after about six months of looking for it. Chuckee darn, y’all, I could’ve guessed that!

Now Pinterest and any other god awful website (I’m looking at you, Instagram) shows me body shaming, hateful things that I wish I knew how to tell the website to block, because back when I was thin I didn’t have these problems. I wonder if it’s looking at me through the camera and going, “Oh, look, a fat girl. We have to make her hate herself so she’ll use the site more.” Kinda like the time Pinterest kept sending me suicide notes while I was starting therapy. Who writes these algorithms? Yeah, I don’t know either. I only use Pinterest to pin Chronic Illness Business stuff.

In all, I gave up on sweating for the wedding, because I couldn’t move. I don’t regret it. During the time I still had a gentle yoga workout regimen, but the cards weren’t in my hands.

2. Having perfect skin

I was super stressed out and so sick I couldn’t communicate to my doctors I didn’t deem essential. For my doctors I deemed essential, such as my rheumatologist and neurologist, I would create PowerPoints on my tablet. When it came time to talk, I would pass the tablet over to them. So when it came time to see the derm, I didn’t create one. I figured he’d look at my skin and be done with it.

Unfortunately I was expected to talk at the derm, and I was not coherent due to the pain I was in. I remember the smirk on the doctor’s face. Not to mention when I was prescribed an acne cream, I couldn’t remember to use it due to brain fog and constantly being on the go with doctor’s appointments sometimes at 8AM. I lived 45 minutes out from the city.

During this time, I was also watched for developing a lupus rash, which the derm didn’t seem to understand, and proceeded to tell me what allergy shots were and how they worked like I was in 5th grade.

Are you a fellow spoonie bride?

Don’t worry. You’re still going to be beautiful whether you labored over your appearance for months or years or not. You should be yourself on your wedding day. Whatever form that is, just is. Nobody owes the world a physical beauty that is strictly theirs to keep, not even on their wedding day. Sometimes we are all forced to be who we are. If you fall in that boat, don’t worry.

I Got Cinderella’d and It’s Not All Great

My husband and I come from two different worlds. He comes from a different stratosphere than I do. I don’t get along with his family, even before I ran away twice. They mistreated me while we were just dating, and I never really understood why until I looked at class differences and ableism.

I can understand not liking me after what happened in January, but the hate I received before my wedding day didn’t make much sense to me. I was threatened with a letter from a church to stay away from my husband because I was “depressed.” Not to mention all the snide remarks about me being a bed warmer and my husband needing a vasectomy.

Unfortunately most of this was communicated to me through my husband, so it was all secondhand information. But it took me to the point where they have to ask permission to come into my house (which I usually do allow because I was raised to be a hospitable southerner) and I will never, ever voluntarily go into their homes.

In rich families, children are investments. Not in a way that children are investments for the future, but in that they can make money for the family. Who they choose to marry has a direct impact on how much cash the child makes for the family and how much of a financial burden they will be.

I was developing fibromyalgia and lupus symptoms while dating my husband. Most likely I was seen as a money pit. My husband told me his family was afraid I would drag him down.

Let me stop right here with this gosh darn ableism. An able bodied person can drag any slooshin person down. Anybody can drag anybody down. I have some friends I cut out of my life who were nightmares. And dragging someone down is cyclical. I most likely will reintroduce those negative friends again once I feel I can. We’ll start out positive and go back down the negative gravy train eventually, then it’ll get too much. But a marriage is commitment. Part of commitment is saying, “I will love you even when I think you suck.”

People fall down and then they come back up again like a dolphin out of water, complete with sex for pleasure and all.

Rich people tend to hide these basic life lessons from their kids by controlling them with gifts that come with invisible strings only made visible when the kid steps out of line. Basically, rich people scare me.

Mental Health Awareness Month AKA My Life: Why I Am Thankful For Every Night I Spend With My Husband

I suffer from an extreme form of fibromyalgia, which gives me constant pain and even worse pain flares, and post-traumatic stress disorder, which can turn ordinary life experiences into nightmares. Because of this living my life is a bit like Russian roulette: you play your cards but there’s always a price, no matter how they’re dealt. You’re never sure when you’ll get shot, either.

My husband and I have an extra bedroom, and during pain flares I often find myself retreating there to avoid skin-on-skin contact. Even worse is when my PTSD is acting up, or when my pain and PTSD are going bananas at the same time. The spare room is my hidey-hole. It’s right next to my office, and it makes a sort of blanket fort.

After beginning EMDR, my marriage with my husband has significantly improved. The best thing about EMDR for me is the use of imagination to cope with daily life. That’s me in a nutshell. If I feel scared by a loud noise, I can escape to my private worlds and receive comfort instantaneously.

I’ve been in a pain flare for a month, and have spent most of my time in my figurative blanket fort. One time the pain got so bad I started crying. I wanted a friend. Anyone who could acknowledge what I was going through.

I plodded through the house in tears, calling my husband’s name. I knew he was my friend. He was and is my best friend. It was midnight, and I was afraid he would come out of our bedroom in a huffy attitude. But I was met with buttery, gentle sympathy. He caught me in a warm, tender embrace as I cried, and I knew I wasn’t alone in this battle.

“Do you want to spend the night in bed with me tonight?”

I didn’t hesitate.

“Yes. Yes, yes, yes.”

We went off to bed and I slept hard, for the first time in a month. I woke up in time for breakfast with him. My pain flare wasn’t gone, but it had abated a little. But I was happy to see his face next to me in the morning.

Marriage gives you a guardian angel to watch over you, someone to fight with you and for you, and you likewise, when it’s a good one. I just needed to remember to reach out. My husband had been shelved by my physical and mental turmoil, and I merely had to remember he was my friend to find peace and solace.

Spending the night with my husband is not something that happens every night, and I don’t think that’s a doomsday marker for my marriage. It’s not because we fight. It’s not because we don’t love each other. We are learning how to cope with my physical and mental ailments together, and we will spend the night together every night as I improve and we both learn to communicate. I have hope and gratitude for us. This is why I am thankful for every night I spend with my husband.

5 Tips For Reaching a Diagnosis

Experiencing bodily discomfort can be scary, especially if it’s new. At first, you may have no clue what to do. You start out talking to family and friends. Eventually, you consider a doctor. The first visit is more confusing and angering than you expected. Aren’t doctors supposed to be like vending machines? You get the sniffles, you go in and out comes an antibiotic or nasal spray? Why is this so complicated?

That’s because the journey to a diagnosis is a long, hard one. If you’re reading this I can guess you’ve been on WebMD self-diagnosing yourself with everything from leprosy to cancer. You may have even come across fibromyalgia by this point, and you might want  to ask your doctor to test you for that. Don’t do that. Fibromyalgia is a diagnosis of exclusion, to be explored in later blog posts, as this is a somewhat controversial statement depending on where you live. It’s basically what you end up with after about a year of tests for everything but fibromyalgia. But there is a way to streamline your diagnosis journey.

For example, I have a severe form of fibromyalgia. It developed over a series of 3 years. There is, honestly, no use in me railing against the medical neglect I received that led to the lack of catching it before it progressed so far. Who knows what might have happened if doctors had seen the tan, fit, blonde pretty twentysomething with a mental health record’s complaints as valid back in 2016? I may have ended up just as severe as I am now. What I do want to do is give you a short regimen for gathering data should you find yourself in a similar predicament.

  1. Know what pain is.

I honestly didn’t know what pain felt like. As a small child, if I fell down and scraped my knee, my mother did not come over, pick me up, and kiss my booboos. Even when I developed endometriosis at age 14 I thought I was just sick to my stomach, light headed, and bleeding like crazy. I could describe what was going on poetically: “Something is clamping on me,” “this burns,” but I never thought of it as pain, because I was taught to ignore, belittle, and never admit pain from a young age. If you can describe what you feel in metaphors, think about people in movies or books experiencing similar situations and if they were described as being painful. If painful doesn’t work for you, think of “this hurts!” Answer “yes” when the doctor asks you if you are in pain if you can pass the metaphor, movie, or hurt test.

2. Keep a log of symptoms.

Buy a little pocket journal. When you get up every morning, write the date. Whenever you experience a symptom – nausea, vomiting, tingling, bowel movements – write the time and the symptom next to it under the date. Repeat. The point of the log is both for you to show the doctor and for you to learn patterns.

3. Exercise

Track your exercise in your symptom journal. Do you feel dizzy or lightheaded? How long are you able to exercise? What type of exercise are you doing? Even if you’ve never exercised before in your life, do this anyway. It will give you a more accurate depiction of your endurance. You can even start off just walking at your local mall or around your neighborhood.

4. Food

Log what you eat, when you eat, in your symptom journal. Your symptom journal should be written chronologically.

5. Clothing

When you write your date in your journal, record what clothes you are wearing and when. Make sure you write down the fabric type of the clothing. This can be found on the tags inside your clothes. This can help you see if there is a pattern between what you’re wearing and whether that triggers a symptom. Numbers 2, 3, and 4 are good things to do post-diagnosis as well.

This 5 step list is great for any diagnosis journey, no matter what the diagnosis may be. Remember to be patient and kind to yourself, because most diagnoses take quite some time. It’s okay, many people have been there before, and get off of WebMD!

3 Mental and Spiritual Ways to Cope With a Pain Flare

When you’re stuck in a pain flare, it’s hard to envision the light at the end of the tunnel. Here are some small (albeit unorthodox) ways you can keep your head above the pain for perhaps a little while.

I’m keeping this list short due to the nature of pain flares. Some of you might be frustrated with all the multitudes of things you think you have to try to get out of a pain flare. I will tell you that some of these might help for only some of you, but these are generally good practices. There are no magic wands to make pain flares go away, but there are ways to make us feel more comfortable.

Why I’m Using Spiritual and Psychological Techniques

Generally, pain flares affect your mood, and your mood affects your pain flare. It’s like a dog chasing its tail that catches it and devours itself. Without cultivating positivity, escaping your pain flare is postponed.

Using Your Mind and Spirit to Escape a Pain Flare

  1. Write down (or tell Siri) 3 things your grateful for.

Each day you’re in a pain flare, take out your journal, your phone’s notepad app, a video or voice recording app, or if you can’t move, tell Alexa, Siri, or Google Assistant 3 things you’re grateful for. Pain flares are tiring, and 3 is all you need right now. No need for pages of gratitude to cultivate it.

2. Read your favorite book with a character you relate to the most. Let yourself cry.

If you relate the most to Jane Eyre and her suffering, read it. Relate to how tragic her life is. Throw a pity party and sob. You need the emotional release, but above all else, you need to relate to someone on an intimate, internal, mental level. Your friends may not understand, but you can make a fictional character understand.

3. Connect to a higher power.

This can be your version of God, the Buddha, Jesus, or the Universe. Connect with the energy around you with meditation, prayer, bed yoga (you can find videos on YouTube), coloring mandalas on your phone, or reading holy texts. Knowing there is something bigger than you gives you the peace that you are taken care of and that the pain flare will go away.

This is a little list, and I wanted to keep it small – pain flares can be overwhelming, and someone on the internet screaming at you to do 12 things might make you upset because you can’t get out of bed. You’re most likely phone surfing from your bed. But pain is cyclical, and this too will pass. Hugs to you.

Wedding Dress Preservation Gift

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.

As most of us are short of cash due to this COVID nonsense, every time I would wistfully express my dream of getting my wedding dress preserved I was met with a staunch “no” from my husband and my finances.

Most of the bridal industry is aware of the state of the world, such as David’s Bridal, whose prices have slashed to $119 for their gown preservation, but that still wasn’t low enough.

This weekend my husband and I finally got around to writing our thank-you notes. We finished in one go, and in the process found a $100 Visa gift card. I figured we would save it for grocery shopping.

At the end of writing our thank-you notes, my husband turned to me and said, “M.B., I think you should use this on that thing you want. The thing that’s wedding related.”

I literally did not know what it was in that moment, so I said, “I don’t want to guess, sweetie,” More books?

“Come on, you know what it is. You’ve been asking for it for months.”

“I don’t want to be presumptuous. Jus tell me hon.”

At this point he smiled huge and said, “You can use this to preserve your wedding dress!”

Well, my goodness, finally!

At first I did try to go to David’s bridal, thinking I could use two forms of payment, but to no avail. Then… I had an idea.

Go to Amazon.

I had seen wedding dress preservation kits there before while googling for them.

I saw one for $101… another for $101…

Finally one for $75.95 with decent ratings and an instructional video link on YouTube.

This is not a product review, but I ended up purchasing the Foster-Stephens, inc White Heirloom Wedding Gown Storage and Preservation Box, and I am ecstatic. I called my mom and sister about it. I told my old roommate about it.

I will have a product review of the kit when it comes in on Sunday.

FYI: My husband had written me a calligraphy note, and did you know he’s designing me my dream garden in Autocad?

Sometimes, people think of you in the strangest of times. I guess that’s part of marriage.

It’s Okay, Magic Happens

My book, It’s Okay, Magic Happens, is finally here! Over the course of about 6 years I wrote this collection of poetry. I do believe this is chronic illness related, as these poems are related to PTSD and the general feelings that come with developing chronic pain.
I have worked on this for the past week, so please, give it a look over and a nice rating for me. It would be appreciated.

Preliminary Ebook Covers

Those who have been on this blog for any amount of time know that I suffer from PTSD. I also believe that it is the root cause of my chronic pain.

There is a lot of evidence that if one has untreated trauma, it explodes into fibromyalgia, and later other diseases. The therapist I work with now specializes in people with chronic pain and their trauma. I am blessed to have found her.

The year following my trauma I began writing poems. I have written poems since 2013 up until today. When I was in DBT I made a writer acquaintance who shared her writing resources, one of which was Scrivener. I got into the program and wanted to see how easy it was to publish on Kindle Direct Publishing (KDP).

It was very easy, however, there were some blunders. I will need to get better and this poetry book is my guinea pig book. Printed in a PDF it’s about 72 pages. I’m still figuring out how to create a print book through KDP.

Anyways, my poetry book It’s Okay, Magic Happens is on the Kindle store. I’m only not linking to it yet because I’m still trying to figure out cover art.

The magical cover
The blue Cover
The glitter cover
The flowers cover

Comment/tweet/contact me with your favorite cover (tell me magical, blue, glitter, or flowers) so I know which one to use.

Thank you so much and I hope you have a wonderful quarantine.

5 Weird Things Newlyweds Do

Bear and I only cohabited for 2 months before the wedding (although I pushed for longer) so the good ol’ moving in together strangeness is upon us, besides being married is just weird. Here’s just some of the weird things we’ve done as newlyweds.

1.Fighting Over Pizza

As newlyweds, you will fight. Wedded bliss isn’t exactly a thing where you’re fight free, but one of the sillier, harmless fights is whether or not to order pizza, what gets put on it, et cetera.

2.Random Classy Twerking

You two will just twerk on each other. (It’s classy twerking because you’re married and it’s done in the privacy of your own home.) Whether one of you is in an office chair working at home, cooking in the kitchen, or doing your makeup. Twerking of this kind can be dangerous, and neither of you will exercise caution. Just speak up if you are cooking, putting on mascara, or on a conference call.

3. Never Leaving Each Other Alone

Want some spare time to make a phone call? Need to see your friends? Is your spouse looking over your shoulder as you write this?

Yeah, it be like that.

But would you have it any other way?

4. Getting Frisky In the Kitchen… With the Windows Open

You wake up, make coffee. Wait for him to get up so you can have breakfast together, and well… he is excited to see you. Very excited to see you. So you oblige him a little, and eventually you realize your large windows were open.

5. Incorporating Your Dog Into Your Married Unit

My fur child, Pupper Princess.

Now, I never officially made Bear Pupper Princess’ Doggy Daddy. I know some girls who make their boyfriends their pet’s dad after a year or so, but I wasn’t comfortable with that. What if she got confused? What if there was a custody battle?

I’ve had my dog for 8 years now. Bear keeps introducing Pupper Princess as our dog. It’s been hard to accept that she is, in fact, an “us” doggo instead of just “mine” now.


Being a newlywed couple comes with many emotions. Anger, lust, adventure, fun, awkwardness… and weirdness, as explored by this post. I assume cohabiters can relate to this as well. Hang on for the roller coaster ride! I hear it gets better!

Handling Church Communications During COVID-19

For the past 10 years, I have been the Media Director for a small rural church that is somewhere between 119-120 years old. In American years, that’s super old for a church in the middle of nowhere away from the East and West coasts.

I began this volunteer position because my father is the preaching minister at this church, and a hobby of mine as a preteen and teen was learning HTML and CSS. I also enjoyed teaching myself graphic design and software tools for fun. Yes, I was a nerd. Before the days of YouTube I was on LiveJournal reading tutorials on how to use GIMP and Coral.

The church did not have a functional website, so one day in my senior year of high school, I simply decided I was going to build them one.

I have built 3 iterations of the website since, and they have all been progressively better. In addition to web building, I added on social media, which has been crucial to the church’s growth and sense of community.

So why am I talking about this and COVID?

Well, social distancing has forced pretty much everyone with a level head to quarantine. Worried about the future of the church, many churches have turned to live-streaming.

Now, all over the internet I have seen Christians bash churches going online, and I want to say, shame on you!

I am immune suppressed, and the majority of the congregation I serve is over 60 or under 2 years old – the most vulnerable populations. Never would I ever spit on wanting to keep any of these precious people safe in the pursuit of personal holiness, such as not being afraid of no virus!

Hello, there’s more than just you on this planet!

This attitude is what makes me afraid of living in the Bible belt, that my fellow Christians are going to kill everyone else off.

So, to go back to my congregation. We are less than 40 people in size, and most people are technology illiterate. The best can use Facebook and go to a website on their smartphones. Most don’t have laptops or a desktop. Many don’t have smartphones or email. The ones who do have Facebook have been posting wild conspiracy theories.

What too many churches and Christians I’ve seen online is that they take their technology for granted, as well as their urban and suburban settings. Not all churches have Twitter accounts, or laser shows, or a stereo setup in their buildings. Some flat out don’t want a few of those things.

I’d like to shed some light that the US is not the most technologically advanced country in the world. There are internet and cellular dead zones 45 minutes away from major cities – this is where the church I volunteer for is and where I grew up. People manage without it. Living there was like a time warp back 50 years, and when I moved away I hardly didn’t know what to do with myself.

Nowadays, rich folks have discovered the area, and things are slowly starting to change. But most of the people at the church are still technologically illiterate, although some of the newcomers work in IT.

My father’s question was, how do we keep the church together, how do we keep them uplifted, and how do we keep them safe while in quarantine?

We had never live-streamed before. Until about 2009 media wasn’t used at all during service – just a basic PowerPoint. The answer we knew was to livestream, however, we had to get the word out, and to convince the deacons of the church live-streaming was the answer.

After setting up and testing technology for a live-stream, my father successfully received approval from the deacons. Next was to communicate to the congregation what was going on.

We decided to use Zoom for our live-stream, because people without internet could phone in and listen to the service. That way, everyone was included. The rest of my team and I took to social media, Canva, and various word editors to create attractive, clear and concise graphics, letters, and emails to send out to the congregation. My mom called all 40 people in the congregation.

It’s been all hands on deck and none of us has gotten a break. This is to say, if your church is actively trying to communicate with you in any shape or form during the COVID quarantine, please be grateful to them. It isn’t easy on them, and they’d rather not be quarantined either – but we’re all in this together.