Wedding Planning For Spoonies: Now With Actual Spoons! 🥄

It’s time for book talk! I’m back to almost 20,000 words after getting the book down to 16,000. That’s quite a feat for a week. And now I have this adorable cover!

It probably is a bit cisgender – but I wanted the rainbow background for a reason. Please give me some #feedback for fun!

For those who don’t know, this is a wedding planning book for the chronically ill and disabled that covers LGBTQ+ as well as cisgender weddings.

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.

The Absolute Realness on PTSD and Marriage

Before Bear and I married, we honestly didn’t know how bad my PTSD was. I knew I had it to some degree, but it was vanquished because I didn’t talk about it. It was simply buried like a honey-badger about to attack our tiny baby marriage from beneath the surface. Does anyone remember that meme?

I remembered how bad my PTSD was when it first started. I would scream in the shower and twist my shampoo bottles across the water. I’d cry randomly in everyday places. Eventually I developed chronic pain once I did stop talking about it. I turned online to vent my fears. But the biggest thing was, the medical professionals denied my PTSD because I kept it under control by staying single for 6 years until I decided to date again, at my roommate’s suggestion.

Once I did, my career spiraled out of control. I began to see and hear things that did not exist at work coming from my male coworkers. There was no way I could work in an office. By the time I quit my job was the time I started going steady with my husband, who had no idea what was actually going on. Neither did I – I thought I had developed schizophrenia.

The same thing would happen at three more places of employment before I gave up and went to grad school, which was a lovely experience. But once I had a new permanent male figure in my life, the craziness exploded again – this time at my husband.

We’ve discovered that letting each other be open and vulnerable even over subjects the other thinks is stupid is the key to getting through our current situation. I’m no longer hearing monsters in the night. Tonight we slept in the same bed for the first time in two weeks. Not because he asked me to leave the room, but because I was hiding. That must have felt horrible to him.

I accomplished two sessions of EMDR this past week, and I think it’s responsible for getting my mind to chill out enough to communicate with my husband. I recommend it for anyone needing trauma therapy. Yes, you can do it remotely.

Warm hugs.

My 1/3 Anniversary

Yesterday, on 4/20 (I did that intentionally) I had my third of a year anniversary.

My marriage has been a fairytale. But not the easy Disney kind. More like the Brothers Grimm kind or the Central Europe kind, where people become disfigured or disabled in the quest for true love. What I’m saying is, you get your magical happily ever after, but magic takes manna and happiness requires danger.

Bear and I have been through a lot over the past four months. Most of it has been because of my untreated PTSD that I’m just now getting treated. I sought help throughout my life, but because I had it buried so deep within me it exploded on my wedding night.

Today I performed a literal song and dance number to express to Bear my feelings about our situation. Then I decided he just needed to hear that he was a good husband, to keep trying, as I would keep trying.

On the day of our anniversary I went into our back yard and picked two of our roses. I put them in the cup we painted together on our first valentines day. I hoped the effect was special enough to override any of the bad juju we’d been through.

When I picked the roses, I noticed how soft and velveteen they felt. I grew up in a literal rose garden. My mother’s yellow roses and my grandfather’s red heirloom roses climbed the walls of my childhood home.
Whenever I see a rose, I am reminded of childhood play, happiness, and my mother’s love.

I had quite a garden as a child, and I grew up exploring the plants and little critters that came with it. But there were always the roses climbing the walls and flower beds.

Bear isn’t giving me a rose garden, but he is giving me a pergola covered with climbing roses once the coronapocalypse is over. We’re going on a road trip to the best rose seller in the state, and I will pick out my favorites. I’lll most likely be a kid in a candy store.

Anyways, Bear, life may not be a rose garden, but it will be a rose pergola with you. Happy one third of an anniversary!

How My Relationship With My Husband Changed After Chronic Illness: Assorted Roses, Assorted Feelings

Typically I try to paint as positive a light as possible of my husband and I’s relationship on this blog. This is partially because I try to do my part to build up our fledgling marriage, but I need to talk about something some of the recently diagnosed may be experiencing by their romantic partner:

Infantilization.

Your parter is now the parent and you are now the child in the relationship. The equality you once sought and enjoyed is gone.

At first you may have fell into the parent/child relationship out of need or heaven forbid, preference. But you quickly realize that the unequal power ratio is unhealthy and you seek ways to make your partner value you for who you are despite your meager bringings to the capitalist table.

You may be completely disabled. So you go online for activism, community, and to see if you can make a buck that way. Or perhaps you can work part time. But before, you had a job job. And your partner has a fancy job job and multiple degrees.

Distraught by the bullying, mockery, and name calling, you wonder why they fell in love with you in the first place. In your mind it certainly wasn’t your soul and ability to make a vegan gluten free jambalaya from scratch. Otherwise, they’d treat you better.

But your partner is power tripping, and you don’t know what to do other than leave and find someone in the underworld like you.

If you can relate to this, you aren’t alone, and I’m still figuring it out too. Take heart.

The Safe Man

I’m going to be writing about trauma therapy and marriage again today, because that’s my life right now. This is not a Whiner McBabypants post where I talk about my specific trauma, rather, these are my reflections on life, love, and marriage as a disabled woman.

You know when you just feel sad, and you just want to be sad? Your husband will cook dinner, do the dishes and watch romcoms with you but you don’t want any of it, you want to feel your own pain?

When I look back on my former life as an able-bodied model, I would call myself ungrateful. This lack of gratitude drug into my life as a disabled person, and later as a disabled married person.

Part of this led to walls-up mode. Most people think I wear my heart on my sleeve, but really this is an act of pushing people away by oversharing. If someone really wanted my honest opinion, they’d probably have to cross Jurassic Antartica with added volcanoes to get it.

I finally revealed this to my husband today, with the caveat that for most of my life, I didn’t think people were safe. But when I put his wedding band on his finger, I marked him as someone who was safe. It was my job to get out of Jurassic Antartica and place him in the sunnier meadows of my mind so I could hear him out, and ultimately communicate with him.

I really don’t have anyone or anything I’m more grateful for than him. He finished building a 4 ft tall aromatherapy garden for me today. It’s that tall so I don’t hurt myself by bending over.

Remember, learning to love is just as hard as accepting it!

On Being Loving and Kind

A few years ago, I came across a slew of articles against teaching kids the importance of self-confidence and self-worth. These articles were on reputable websites such as Huffington Post around 2011.

At the time, I felt something acute pierce my chest, a sort of pallid, sudden sadness for these authors who blamed Disney and participation trophies for their own failures. It was pathetic. Couldn’t they see that pointing fingers at children’s movies was embarrassing and only they were in control of how they reacted to their lives, not a woe-earned participation trophy in fourth grade?

As I grew older, I saw more pointed blame at elementary school gifted and talented programs. Why? Because the child was told they were special, and they didn’t have to earn it.

Let me tell you a few things I have always believed that nobody ever taught me:

  • All individuals are unique, there are no unique individuals or nonconformists because we are all born under different circumstances and think different thoughts. We are all unique nonconformists.
  • Everyone is inherently divine and has a light inside them, which makes them worthy of respect. It doesn’t matter if you’re the lawyer or the janitor in the office. Most of us have flipped a burger at least once and we all fall on hard times.
  • This means you are special, you are worthy, and you don’t have to earn it.

Thing is, I believed this for other people. I didn’t believe it for myself.

This meant these thoughts were inauthentic, because if you don’t hold these three key truths for yourself, you will never go all the way genuinely in your mind and actions for anyone else.

What you’ll end up being is a ditherer – a washout – who is a mouse of a person. People will push you around and you’ll think it’s okay because of the three principles. They are inherently special, so you have to do what they say. But because you don’t hold yourself to be inherently special, your self-esteem suffers, and you begin to think nasty thoughts about these other people. The people who “push you around” may not even be pushing you around, they might be decent, ordinary humans trying to get on with their lives. But your warped point of view has them out to be devils. Or the pushers really could be pushy – your lack of self-esteem has driven you to choose bad friends.

What’s the point here? If you see your loved ones as hecklers, you aren’t going to love them well. You will make yourself out to be a victim. Yes, you might have good reasons – a troubled past, or a Disney movie (Bambi is very traumatic) but at the end of the day, being the loving, kind self you think you are starts with being loving and kind to yourself. Maybe start with Wreck-It-Ralph and work your way up.

Product Review: Foster-Stephens, inc White Heirloom Wedding Gown Storage and Preservation Box

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 past week, my husband found a $100 Visa gift card and did a very kind thing for me. He gave me the gift of a wedding dress preservation box, something I had been dying for months to get.

I loved my dress. I loved it so much I wrote an article on Offbeat Bride about it. But I love my husband more.

My husband and I have been through some real hell. There is no doubt in the medical professionals’ minds that I have PTSD although I’ve been saying that for years in an attempt to get help. It all exploded when I married Bear. I exploded HUGE twice.

I’ve got some major guilt about what I’ve done in the light of my PTSD. But I’ve started trauma therapy (and missed one day due to being extremely ill) and hope that I’m on the path to recovery. Bear is who I want and who I love. He’s who I am eternally grateful for in the midst of all this crazy inner turmoil.

Lately I’ve come to realize that Bear is a human being *GASP* who has dreams, and gets frustrated and anxious when those dreams are delayed or seem thwarted. This realization came to fruition with the writing of my next book, when my beta readers wouldn’t get back to me, finding editors and agents, and not knowing my way around the book world whatsoever.

I mean, I always knew that Bear had dreams, interest, and goals. But the experience of chasing after things most people would deem trivial, such as Master Gardener, while constantly being thwarted by circumstance, enabled me to understand him on a deeper level.

When it comes to marriage, it’s easy to make the bogeyman out of your spouse, but most of the time they have good intentions. At least that’s the case with mine.

Anyways, those are my marital musings of the day, on to the review!

Product Review: Foster-Stephens, inc White Heirloom Wedding Gown Storage and Preservation Box

The Foster-Stephens box arrived in style with a neat color scheme and design. But because it’s a box within a box within a box, the actual box that holds the dress ripped when I attempted to take it out. This wedding dress preservation kit is all cardboard.

The box within the box whose corner ripped.

It’s an attractive box, in a grandma sort of way. Cheaply made and flimsy, we only paid $75 when some kits are over $200. As I was working to put the acid-free tissue around my dress, the cardboard box was bending.

This is the inside bottom of the box where the DIY bustier form is. I could somewhat make the cardboard bustier, but it was too large for my wedding dress as my dress had an empire silhouette. Or maybe it just wasn’t cooperating. In the end I stuffed my dress with acid-free paper provided with the box.

I don’t know how I was supposed to wrap the rest of my dress and stuff my bodice with the acid free paper provided because the pieces were so small. My dress doesn’t even have a train.

The DVD included with the information zip-lock, I just watched their YouTube video.

This Wedding Dress Preservation Kit Comes With

  • DIY Cardboard bustier
  • Window viewer
  • Acid-free paper
  • Cardboard box
  • DVD
  • Instructions with how to watch on You-Tube

This Wedding Dress Box Does Not Come With

  • Muslin
  • Gloves
  • Dress cleaning supplies

Before using this box or any other, you should get your dress dry cleaned!

Overall?

I put my dress in a white box partially wrapped in acid-free paper.

It cost me $75.

If you really want gown preservation, I suggest saving up and going elsewhere, but if you have a case of the poors like we do, this is a box and it does something for your dress.

If you’d like to buy it, try here.