I like to write songs, and from time to time I think I make a good one. This one hasn’t been set to chords yet – and when it would be it’d be ukulele chords – but this is in 3/4 time and is a little indie pop/jazzy tone to it. Most songs I write are a bit soulful, this one is more whimsical (as it fits the instrument).
If you can imagine ukuleles sounding sad, that’s what I do with my music.
I actually wrote this song feeling happy while hanging out in the living room with my husband, and some melancholy apparently came out.
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.
I follow the Memes for Jesus page. One time I actually messaged them and got no response.
Recently I thought of a meme about PKs, or preachers kids. Often times in the comments of the Instagram page people seem to have the idea that the PK does whatever they want. That wasn’t my experience.
My idea was that PKs on the inside were the song Reflection from Mulan. In the song, Mulan expresses sadness and anxiety for perceiving to not live up to her family’s expectations. Generally all PKs I know are balls of perfectionism and anxiety, whether they end up functional or heroin addicts, Christian or otherwise. This is a mix of expectations from their parents congregation and expectations of their parents to be perfect examples of Jesus to the community.
I still grapple much with my upbringing and my faith. There’s a lot I wish were different, but you do the best you can with what you have.
Sometimes all you have is six chords and the truth or a bible and your tears, and that’s enough.
Whatever enough for you is, know that you are worthy, no matter who your mother or your daddy was.
Throughout history, different people have come up with numerous ways to determine how to define a human being, or rather, a person’s worth.
The most common in the west is money, that ones value is determined by what a person gives to the economy. I tried so hard to give to the blessed mother economy that has given me so much. Say what you want but in the end I was its slave. A marker of adulthood is being a willing one, and I was, but I had fallen down and was thrown to the side with the chaff.
Worse of all, I am now applying for disability. I am asking money from the government, an act considered so heinous by many people I know I don’t deserve the donated clothes on my back.
Many conservative people will tell you a woman belongs with a man. I will not disclose why but I have decided my husband and I cannot do this marriage journey in our short time together. This will bring me shame from my surrounding conservative community.
Oftentimes when I volunteered to cook at funerals people would ask when I was going to get a man because my food was so good. It took me six years to find one, but it turned out to be a bad love.
At first I thought I would be relieved, but then the tears started coming every day. I’ve been listening to “The Redheaded Stranger” album by Willie Nelson on repeat the past two days.
I am afraid I will lose my sense of personhood through all of these losses, but I am doing what I can do hold on to Christ and what he says, that I am God’s child and his princess. I am royalty, even if the world says otherwise. No one can take my crown. If it needs adjusting then I do and keep marching on.
Does this all go down to the choices we make consciously?
Could I have foreseen being rejected by a dollar, or what was to go down with my husband?
I don’t know if I could have at all. But there were points where I could have demanded more or walked out. And I did try that, to no avail.
You end up where you are and there’s no use reminiscing. You straighten your crown and march on.
That’s a crown from God that no illness or man can take away, ladies and gents, and it’s on your head whether you believe in it or not.
If you read my Mission page, you’ll find that I want to make hobbies accessible for those with disabilities and chronic illnesses (however you may identify). Before my whopping 6 diagnoses (RA, fibro, lupus, gout, and hypothyroidism) in the past year, I loved to cook and bake. As I became progressively sicker, I found myself ordering more takeout. Then I married, and as newlyweds on a budget, I discovered the magic of crockpots.
Let me tell you, crockpots are magical. I will eventually come up with a list of kitchen hacks I’ve come up with for this blog.
The number one rule of crockpots is thatanything you can make on the oven or stove, you can adapt to a crockpot.
For this recipe, I am especially proud because I came up with a genius hack (that I forgot to take pictures of) that I hope will help you in your cooking endeavors.
I used a vegetable steamer to cook plantains separately inside the slow cooker at the same time as the rest of the recipe.
I am not a meat eater, but let’s say you need to make a dish that isn’t a stew and has something cooked separately, like tofu for my fellow vegans, or chicken for my meat eaters.
Put all of your other ingredients below, place the vegetable steamer in the middle, and put your separate ingredient on the vegetable steamer. Let the slow cooker cook as usual. Et voila!
Vegan Costa Rican Casados
There are two types of Costa Rican food that come to mind for me – Gallo Pinto and Casados. The difference is in Casados, you don’t mix your rice and beans together.
– 1 can of black beans, not drained
– 1 cup brown rice
– 2 cups water
– 1 pack of Goya frozen yellow plantains
– 1 medium avocado
– 2 tsp garlic powder, divided
– 2 tsp paprika, divided
– 2 tsp adobo seasoning, divided
– 2 tsp cilantro, divided
– 1/2 tsp black pepper, divided
– 1/4 tsp salt, divided
1. Pour the black beans into one side of the crock pot. Remember we are trying not to mix our rice and beans!
2. Place vegetable steamer in the middle of the crock pot.
3. Pour the rice into the far other side of the crock pot opposite of the black beans.
3. Slowly pour water on top of rice.
4. Evenly sprinkle seasonings on the rice and beans (so there’s 2 tsp adobo, sprinkle 1 tsp adobo on rice and 1 tsp adobo on beans).
5. Take the frozen plantains out of their packaging. Don’t try to break them apart. Put them in the steamer. It’s okay if they lean to one side.
6. Set the slow cooker to low. Because of the plantains, you don’t want to set to high. Set to low for no more than 5 hours, preferably less.
7. In the end, your plantains will be dark, a dark brown that is almost black, which is not traditionally Costa Rican, but they will taste delicious and not be burned.
8. At the end of your 5 hours, find your avocado. Take the avocado and slice it in the number of how many persons are eating. Each person gets a slice. I made this for my husband and myself, so we each got half an avocado. Traditionally the avocados are cut up into thin long slices, but this is for people who have limitations. If you have wrist problems (like me) try using an avocado slicer or a handy friend or family member. I merely sliced the avocado in half with a plastic chefs knife and scooped the avocado out with a spoon. Do not put the avocado in the slow cooker! Keep fresh by storing it on your cutting board or plate.
9. Grab a plate and oven mitts. Take the vegetable steamer with the plantains out of the slow cooker and dump the plantains on the plate.
10. Scoop some rice, beans, plantains, and avocado on your plate and enjoy!
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 had a scary ER visit last week where they suspected I had walking pneumonia or a gallbladder problem of some kind. They tested me and because I am miraculously always okay, nothing was found.
The past few days I’ve done nothing but lay in bed.
At first I thought it was because I had to help my fiancé put a king size mattress on our bed frame – wherein my nails were all ripped off and I proceeded to shout at him when he asked if I could do anything at all, I thought things were going well teamwork wise until that point – and even though we purchased a luxury hybrid Casper I felt like I was sleeping on glass that first night.
I had a doctors appointment wherein I went over the mattress duel and my nurse said I needed to make sure my man did not do that to me again; he needed to call in some man force and get a friend to help. I should not be doing that.
Anyhoo, after the bed made it into the bed placement zone on Wednesday I have been broken physically. Before the bed made it here I began suffering from costocondritis, or inflammation of the chest wall, and do not wear bras anymore. Not even when the in-laws come. Or when I go to Jesus’ house. I think Jesus is more okay with it than the in-laws but people get lots of things confused with Jesus.
Two days ago, about the time the mattress fiasco killed me, my costocondritis worsened and I began breathing like a flat nosed dog in July. It felt like the flu.
Last December at exactly this time, the week of my fiancé’s Christmas party, I came down with the flu, and I had it for 3 weeks.
I’m getting married in less than two.
Lord willing and the creek don’t rise, we’ll have ourselves a wedding. Or maybe it will be postponed, held in a hospital room, I don’t know.
I’ve had Being Well When We’re Ill, a Christian take on Chronic Illness by the theologian Marva J. Dawn for a week now. I was wary of it at first, as the first two chapters are rather dark, speaking to the soul of a downtrodden spoonie, and this I understand. I often cry out in writing to other chronically ill and disabled people in the hopes of touching someone else – and Marva does exactly that.
Marva herself has multiple illnesses and at times is a wheelchair user. Still, she does many wonderful things. She travels to speak at conferences, sings, teaches children, and still goes on missions trips! The book quickly becomes uplifting and a delight to read, while still staying doctrinally sound while never being preachy. The book is full of tenderness while explaining some basic tenets of Christianity, as if she is grabbing a long time Christian and slowly guiding them home to comfort, or bringing a new visitor in and seating them home on the couch.
There are many golden nuggets in this book and I’m not quite a third of the way in yet, but this gem made me smile from my lower belly up to my retinas:
“Author Flannery O’Connor (1925-1964) is known for her novels and short stories dealing with people’s vain attempts to escape God’s grace. Before she died of the lupus that crippled her for the last 10 years of her life, she recorded some of her struggles in letters to friends. In one letter to Louise Abbot she wrote,
‘I think that there is no suffering greater than what is caused by the doubts of those who want to believe. I know what torment this is, but I can only see it, in myself anyway, as the process by which faith is deepened. A faith that just accepts is a child’s faith and all right for children, but eventually you have to grow religiously as every other way, though some never do.
What some people don’t realize is how much religion costs. They think faith is a big electric blanket, when of course it is the cross. It is much harder to believe than to not believe…
Whatever you do anyway, remember that these things are mysteries and that if they were such that we could understand them, they wouldn’t be worth understanding. A God you understood would be less than yourself.
… I don’t set myself up to give spiritual advice but all I would like you to know is that I sympathize and I suffer this way myself. When we get our spiritual house in order, we’ll be dead…. you arrive at enough certainty to be able to make your way, but it is making it in darkness. Don’t expect faith to clear things for you. It is trust, not certainty.’
The spiritual practice of recognizing that Jesus called us to take up our cross (and not our teddy bear!) enables us to live with the uncertainty of abiding in faith. Even though we cannot know or feel with certainty, we can know the Trinity with trust because we participate in it with Jesus, whose cross conquered sin and death forever. That we know!” – Marva J. Dawn
As someone who has grappled with the idea of God on an emotional level since childhood, but still looked for him everywhere, searching until my heart broke and I left the faith to come back as an adult, I often felt defective. I never felt like a real Christian. But this passage maybe makes me believe I have credibility of a sort. We seek and we find, but what we find may all be different. For those of us with chronic illnesses, our finds may be drastically different!
I am looking forward to the rest of this book. For any other struggling Christians, I have a question so I know I’m not alone:
Have you watched the SNL movie Superstar? If you have, do you find Will Ferrell Jesus weirdly comforting? I always find the idea of God easier to grapple with after watching Will Ferrell Jesus. It’s weird. It’s irreverent. I know. Probably need to get my salvation card back from the library.
Pocket full of starlight: “Happiness can be found in the darkest of times, if one only remembers to turn on a light.” – Albus Dumbledore
Pocket full of darkness – Was Albus Dumbledore just that kid who made one-liner witticisms in class? Then he grew up, became super old and grew a beard so instead of being that jerk in class people now think he’s wise?