I understand I’ve been missing these past few months. I’ve been struggling to find a way to be useful and not self-destructive with this blog while suffering from difficult emotions, and I have to say that while my posting regularity may not be up to speed yet, I’m happy to interact with people again.
I am working with an editor on the book, Wedding Planning for Spoonies, and an old family friend with a degree in design is working on my final book cover. Both iterations of the project should be done by January and I hope to release the book six months from that time (with preorders!).
I’ve also created a Facebook page for the book if you’d like to give it a like and a share.
The Spoonie Bride Project, my largest social media project to date, has not reached a road bump or a stopping place. I am in the process of interviewing 3 Spoonie brides and will hopefully have their info by the end of the week.
I am very excited about all of this. Wedding planning can feel so lonely – especially when you have a chronic illness or disability – and I hope the Spoonie Bride Project helps alleviate that.
Part of the project is to help vendors understand the needs of this base of their clientele. The 8 questions include the final, “What would you want a vendor to know?”
Today please enjoy Holly’s wedding story on Pink Fortitude. She shared it with me and it is a beautiful story. Do enjoy.
Want to be part of the Spoonie Bride project?
Contact me at email@example.com with the title “Spoonie Bride Project [insert your condition here]” and we’ll get the ball rolling with your interview!
I was diagnosed shortly after my engagement to Bear, and whenever I looked for help or advice on your typical bridal forums or websites (such as The Knot or Wedding Wire) I was always called a bad person or shunned. I was even told I had lupus 3 days before my wedding!
The Spoonie Bride Project exists to be a single source of information for brides with any condition to come for information about their day. It also provides to serve as a source of confidence to say, “Yes, I have X, but she did Y!”
The information will start out as interviews on my blog as I like to have a daily blog post, but will later be compiled.
I will go back to usual programming eventually. But I do have several big projects looming on the horizon.
My groom came running into my bridal suite – that is, my childhood bedroom – screaming about how no one had the time to help him tie his bow tie. His father would be ashamed of him and give him a hard time. Never once did he call me beautiful, or seem in awe, and I had just gotten ready, makeup and dress. At the time it really hurt, but the ridiculousness of the bowtie situation is laughable now.
2.You Struggle to Fit in Your Dress… But You do!
This is every bride’s worst fear. It nearly happened to me. But I had… wait for it… Walmart Spanx on hand! They were super soft and just what I needed to slip into my dress.
I think the cheap Spanx is the best kind. I’ve had many throughout the ages and the best compression shorts (the kind I wear) have held up since 2014 and are extremely soft.
3.Your First Kiss is Interrupted
Babies crying, phones ringing… for Bear and I the doorbell rang with an Amazon package of our aisle runner (my family did my wedding by the seat of our pants) and our flower dog came running down the aisle barking!
4.The Music is Messed Up
Bear and I didn’t have the budget for a real DJ, despite me finding one, my parents are against real music at weddings for religious reasons; it really was their wedding anyway. They didn’t even want us to have a first dance! So we had an iPod DJ. My mom volunteered but couldn’t figured it out, so the ceremony was messed up until a college student family friend took the reins, then we had no music the entire reception, as is my parent’s religion’s custom. Finally we got to have our first dance despite some resistance.
5. It Rains on Your Wedding Day
It did rain on our wedding day! But we had gorgeous pictures. The lighting in the rain makes for the best photographs.
6. You Lose Your Day-Of Coordinator
Unfortunately, this was the case for us. It wasn’t her fault. My health took a turn for the worse and we had to reschedule the wedding; she couldn’t accommodate us. Spoonie weddings are hard to keep track of because they are so unpredictable, especially if the bride is a new Spoonie.
However, we ended up feeling the love from our community. This was a great gift.
Weddings can have all kinds of blunders, or “mistakes”, but they’re nothing to be worried about. None of them mean your marriage is doomed or that you’re not beautiful.
However, as a bride, you’ll quickly learn that your wedding is not about you – it’s usually about your mom, your MIL, your aunt, the groom… because after all, weddings are a team sport.
Keep that in mind, and also keep in mind that even the best of us turn into bridezillas.
It’s okay. Hugs to you, you’re marrying the love of your life!
When it comes to planning your Spoonie wedding, it’s all about the dress. If you suffer from chronic pain from a chronic illness, the dress will be a big factor in how your wedding day will go. This is because it dictates your comfort level. There are easy ways to figure this out without wasting spoons trying on tons of dresses, which will drain your energy.
Tips for figuring out which dresses totry on
1. Consider a non bridal dress that happens to be white.
These will have less layers and will be less heavy, and also less expensive. I try to be budget friendly on this blog because I know with medical expenses everything else can get in the way. Prioritize your health.
2. Look for a dress with only two or three layers.
Wedding dresses are like cakes. Some have more fabric layers than most. Some have up to 12, and this makes the dress heavy. The heavier the dress, the more uncomfortable you will feel as it places pressure on your body, causing pain and exhaustion.
3. Consider the fabric. The softer and lighter it is, the better.
Jersey knit, lace and satin are favorites. Make sure you bring a flash light to test if the fabric is see through!
4. If your weight fluctuates, consider a corset top.
The dress I landed on was a soft lace up all the way with a ribbon. That meant that no matter how my body changed, the dress could be altered through tightening or loosening the corset lacing.
I originally bought the first dress pictured, and it was zip up all the way which ended up hurting me in the end.
Where should you buy a dress?
My dress was not bought at a traditional bridal shop, so I suggest getting creative with your search. Personal favorites are:
1. Secondhand bridal shops
This way, you can buy couture for less, and get it off the rack the same day.
2. Quinceanera shops
This is where I found my dress. You can find excellent customer service and a different style of dress if you don’t like current bridal fashion, like I do.
3. Department stores
These are good places to find dresses with less layers. The dresses will be simpler and more low key, and a simpler dress is usually a more comfortable dress.
Good department stores are:
I had a bad experience at David’s Bridal with my body fluctuations. I do not recommend them.
How to shop
1. Do NOT shop online.
2. Only go to one store per day.
3. When you dress shop, make it your one goal for the day.
Try to wear as little shapewear and other undergarments as possible. This means no complicated slips or spandex. You’re going to need to pee at some point. These items are also restrictive and uncomfortable. I did wear a soft, expensive strapless bra and soft spandex shorts on my wedding day. I made sure my undergarments were soft and necessary. If it’s your wedding day and you think you look good without your spandex, skip it. I was still comfortable in mine because of the type I wore.
My dress was satin and silk. It didn’t have structured hard boning in the corset. This meant the corset was soft, which was good for my costocondritis. The dress had an empire waist, so there was no pressure on my abdomen, which is a constant painful spot for me. It had crystal sparkle detail on the bodice, and a simple three layer skirt. It was not heavy at all and twirled!
You can still have a princess dress and comfort. Just know what to look for, and don’t give up on the dress of your dreams!
My husband and I were struck by two tragedies after our wedding, and we’ve only been married a month. I’m trying to cling to the magic moments in these dark times to superglue myself to him.
Because I was bed bound most of the time and walking with a glitter cane the month of the wedding, my parents took my $5,000 wedding at at a family friends children’s camp and moved it inside our house so I wouldn’t have to walk far and could rest in my bedroom if needed. We lost a ton of money but gained spoonifying the wedding this way. After all, a small house wedding was originally what I wanted.
We DIY’d all of our decorations. My mother, sister, father, myself and family friends set out heirloom china. Early on in the planning process my mom and I found a pack of vases, orchids, pearls, and tea lights used in a previous wedding on Craigslist, and they were used everywhere as decorations. Our tablecloths were also from Craigslist from a previous wedding.
Please note that while I did help set up I lost spoons and did have to rest during my wedding. I’ll get to spoonifying your wedding in a moment.
Why I considered my wedding spoonifyed
1. I didn’t have to travel to a venue. All I needed was right there.
2. My walk down the aisle was a walk down the short hallway. At the 30 acre venue, where I would have to cross a creek to get between the ceremony site and the reception space, we were afraid I would have to use a cane. It was also outdoors and could be muddy. This way, no one would know I was using a cane as I didn’t use it around the house.
3. I could rest during the wedding reception, and I did. The reception was a vegan dinner with a fabulous vegan cake held in my parents formal dining room that shared a wall with my bedroom.
4. We had a 20 person guest list cut down from 80. This was hard to do, but worth it.
Dos and Dont’s of Planning a Spoonie Wedding
1. Hire a full package wedding planner. You may be on a budget but my wedding stole my health because I didn’t do this! Please at least hire a day of coordinator, some of these are very affordable if you go to your local bridal expo.
2. It’s all about the dress. Choose a simpler dress that is comfortable! You will still be beautiful even if you’re not in a Pnina Tornai!
3. It’s honestly about the shoes. Don’t even wear kitten heels. Wear flats, sneakers, or even crocs that don’t look like crocs (don’t cringe but crocs makes flats and they are my fancy shoes). I have lots of foot problems so this is my go to.
4. Thou shalt NOT go dress shopping without watching Say Yes to the Dress at least 10 times, and thou shalt NOT be ashamed of your tiny budget. Not every girl can drop even $600 on a dress. I dropped $200 each on two dresses, one I couldn’t wear anymore because of swelling and the one pictured I wore on my wedding day that was really perfect. I found my wedding dress at a quinceanera shop that was local, and they were really kind to me when I explained my situation.
5. Let. People. Help. Please. You need your spoons for the wedding. Your community will be your rock through the process.
6. House weddings are the way to go if you can’t afford a hotel. See if you are close enough friends or family with someone with a nice house. With a house or hotel wedding, you have the option of going and resting during the wedding day. A house option is cheaper.
7. Be open with your vendors about your illness. You don’t have to disclose what type, but by being open I was able to move my wedding date 3 times due to my diseases progressing. You may also get free stuff and advice!
Make sure you know what you want in a dress before you buy. I had no idea I wanted a glittery ball gown until I watched an episode of Say Yes to the Dress, but I had a lace sheath that I couldn’t fit into three months out that I bought the day I got engaged (I know…).
We had an awesome day of coordinator, but we lost her when we moved the date due to a medical emergency. In Texas wedding season is winter, so we only found a set up/tear down person.
The doorbell rang with our aisle runner as soon as Bear and I kissed to seal the deal and our flower dog ran off.
We threw the wedding together in 48 hours. Don’t do that. Plan more meticulously like I was for my big outdoor wedding.
We weddinged, it was spoonifyed, it may have inconvenienced a lot of people, but now we have each other.
I never thought I would meet a nice guy. Or a decent guy. A kind guy. Someone who was sweet to his mother and animals. The kind of guy who had interests, passions, and hobbies. A real person that cared about things that mattered, who lived for a cause, and wanted things in the earth to grow.
This is, to many people, the definition of an interesting person. But when my fiancé went out of his way to meet my dog, get to know my roommate, FaceTime my father, all before we became an official couple standing in my doorway with a bouquet of wildflowers, wherein I made the move – I knew he was intentional. Nothing he did was by chance. He saw the world in a grand design of patterns, a graph of charts and maps to set upon to reach a glorious destination. His heart was tender but it’s beat was strong, rhythmic and deep, he was searching for someone with whom it could roam the forests with in the daytime and snuggle up with by the firelight after dark. That heart saw something in mine and it didn’t want to leave.
If I seem like I romanticize him here it is in part true. He deserves it because of what I’ve put him through, and the path that he’s chosen that I’ve so often warned him about: a life married to someone coming to grips with chronic pain.
Very often I flip flop between positivity and deep negativity on this blog. It’s hard to remain objective at age 27, engaged and not used to parts of yourself you didn’t know exist emerging in pain on random days of the week. My fiancé has been a real trooper in that he miraculously understands that when I try to rain on his parade, it’s my physical pain talking. This is why he is my Bear. He is strong and elusive, yet fuzzy, warm and a great comfort.
A few weeks ago I wrote Bear a letter and asked him to put it on the wall, somewhere he could easily see it, in case my pain took over and I didn’t behave how I wanted. In the letter I put a piece of myself that was still gentle and loving and would give him a kiss when he needed it if he would only look at it.
Maybe that’s marriage insurance, but I can only do so much for my dear Bear right now.
To my Bear, I give you all the tenderness in the world and I thank you for sticking by me through all my inexplicable suffering. I’m glad you’re the team optimist. Let’s make it to the wedding day.
It’s almost a month left until my wonderful, creekside spoonie wedding, and I’m left with some thoughts.
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.
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.
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.
There is an old Final Fantasy meme that comes from a translation error. In every Final Fantasy game, a character uses the insult, “You spoony bard!” The internet took off running with it, and so did my fiance when I was first diagnosed with Fibromyalgia in August 2019.
I was suffering for months and losing hope. Once, in one of our stay-in dates, we talked about what we would do if we could design a videogame. I suggested we create one about a girl whose power was music. In the beginning of the game, she loses her powers, but not her voice. The goal of the game is for her to take down an evil ogre and receive her powers back.
When I was diagnosed, my fiance suggested I start a blog called “The Spoonie Bard” to cheer myself up. When I asked why, he showed me the Final Fantasy meme on Know Your Meme.
Christine Miserandino’s famous “Spoon Theory” essay, in which Christine, diagnosed with Lupus, teaches her friend about life with a chronic illness using spoons at a restaurant. The friend was given twelve spoons, and for each action a spoon is taken away. It’s an excellent illustration for those recently diagnosed who wish to explain their new predicaments to their loved ones.
The Spoon Theory is where the term “spoonie” comes from. Spoonie refers to a person with a chronic illness. So my fiance, upon learning about the Spoon Theory from Jenny Lawson’s funny books, applied the meme to my situation – the falling star he had put in his pocket was applied to my starless night.
So, welcome to my blog, where I, the Spoonie Bard, offer you my pocket full of starlight, and all of its darkness too. Because let’s face it, chronic illness is hard.