List of all the ways I’ve been loved TODAY

When a person comes around to recognize their blessings, they need to record them. It’s like taking photographs of favorite destinations, making a collage, and displaying it teenager-style like your soul anthem on your bedroom wall. There, your memories wait for you each time you go to sleep.

I’ve been suffering on multiple fronts lately and I want to acknowledge the ways people have loved me TODAY, even if it was part of their job description:

  • The librarian who showed me Convenience Store Woman, recommended it to me, and had a conversation about it with me after she noted how much I read in a short amount of time. Thank you for your book love that is a part of your job description but still needed.
  • Sayaka Murata, for writing Convenience Store Woman, so that I could find it today and laugh my ass off when I asked the librarian for the happiest book in the library
  • Bear, for buying me books, queso, and enchiladas. Money can’t buy you love but they can buy you comfort. Thank you for loving me in this dimension today.
  • Bear, who shows genuine love and concern by answering all of my phone calls at work despite our current living situation, who truly does care, and won’t let me forget it. Thank you for loving me genuinely and unconditionally.
  • Bear’s friend, who was asked by Bear to check up on me, and did even though she didn’t have to. Thank you for being a friend of Bear and consequently, of mine, even if you may have gotten more than you bargained for.
  • My friends, for periodically checking on me, texting and calling throughout my day.
  • Random person on roll20 who noticed my distress at being unable to dungeon my dragons, thanks for reaching out to a freaked out person going through a DBT skills breakdown.
  • Mom, for driving me to DBT and the library because the doctors say I can’t drive right now.
  • Mom and dad, for driving me to meet Bear tonight for our date.
  • Dad, for trying to fix the record player so I could experience vinyl and not rely on digital technology to listen to music.
  • Indoor plumbing, for giving me a hot shower and a soaking bath. You do you man!
  • Me, for taking time out of my day to try to learn some new ukulele songs, devote time to music when I haven’t in years, and feed my brain. Learning to love you too boo.

Feel free to share ways that you felt loved TODAY in the comments! I would love to feel the love, and I’m sure you would too!

Amarillo by Morning

It’s my usual early morning. Most days I wake up at 4 or 5 am, except for Sundays where I sleep till noon (the one day my religious family would like me to be up early).

As I sit here at the keyboard, I’m thinking of a song that’s stuck in my head: Amarillo by Morning by George Strait, or the unofficial Texas National Anthem. (It’s totally not, I had to sing the anthem in choir and I guarantee it is not as awesome as Amarillo by Morning.)

With all the crazy psychonautical bullshit that is going on with my health and personal life, the yearning, symphonic nature of the song really speaks to me, especially these parts of the song.

Amarillo by morning, up from San Antone
Everything that I’ve got is just what I’ve got on

When that sun is high in that Texas sky
I’ll be bucking at the county fair
Amarillo by morning, Amarillo I’ll be there

They took my saddle in Houston, broke my leg in Santa Fe
Lost my wife and a girlfriend somewhere along the way
Well I’ll be looking for eight when they pull that gate
And I hope that judge ain’t blind
Amarillo by morning, Amarillo’s on my mind

Amarillo by morning, up from San Antone
Everything that I’ve got is just what I’ve got on
I ain’t got a dime, but what I got is mine
I ain’t rich, but Lord I’m free

Amarillo by morning, Amarillo’s where I’ll be
Amarillo by morning, Amarillo’s where I’ll be”

-Amarillo by Morning, George Strait

I’ve lost all of my worldly possessions about three times in this life, and the notion of finding freedom in that in the song I wonder is what the singer is truly feeling or if it’s a wish. If it’s a state of mind, a place you lock yourself into so you can make it to Amarillo. But once you’ve lost everything three times, I guess it’s safe to say you know you’ll be okay.

Amarillo by morning this 5am. Amarillo is where I’ll be.

(I don’t live in Amarillo please don’t try to find me.)

Reflection

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.

A Dream Is a Wish Your Heart Makes

My view from my Sansa 12 passenger plane in Costa Rica.

My mother was a pilot.

She flew Cessnas back in the 1980s.

Whenever I would ask her about it, she would talk about it as if it were some frivolous, silly thing. That is, until I told her I wanted to be a pilot. That I wanted to fly Cessnas.

Yes, I want to be a bush pilot. I want to fly people out into the middle of nowhere, go on adventures up in the sky, and I want to write about my adventures. My big dream is to see the world from up above and chronicle it all.

My hands aren’t working right now, but I’ll close out with some wisdom from Disney’s Cinderella:

“Have faith in your dreams and someday
Your rainbow will come smiling through
No matter how your heart is grieving
If you keep on believing
The dream that you wish will come true”

For now, I have Google Earth Pro’s flight simulator. With my hand’s being messed up I keep crashing my little propeller plane. Maybe once Bear and I get through these crazy medical bills, I can get a joystick.

Keep dreaming, and I’ll see you on the skyways.

Recording the Moment

When you feel happiness, it’s just as important to write it down as sadness.

Sometimes we’re all too tempted to stand out in the rain and put it down as inkblots on a page than let the sunlight bathe our journals in warmth.

Life as newlyweds has been uncharacteristically hard for Bear and I. We have both been grieving my illnesses. It can be hard to forget that my sickness is just as hard as him as it is on me. But Bear is a strong and mighty bear, and he fights for me. He may not fight in all the ways I thought he would, but he does so much more than I expected.

In the morning before I wake up, he kisses me. While my hair is still crazy and he changes out the coffee filter for me as I’m standing in my completely unsexy pajamas half awake, he worships me. From my head to my toes he caresses me, telling me how beautiful I am, how smart I am – this translates to me, how worthy I am to be on this planet even though I can’t do all those wife things and we’ve only just started. In the corner of my eye I notice a dozen of red roses, one of my favorite flowers, on the kitchen table he bought for me last week.

There’s a bag of oatmeal in a recyclable bag on our white Formica countertop in our lovely sea-foam green newlywed kitchen he claims he bought for me but he picked out himself. The large bay windows over the breakfast table bathe us in pure morning light as we flirt with each other.

Moments like these make me realize that life may be full of pain and anger, but it’s also full of love and hidden rainbows at 7am. If I’m going to live fully, not just survive, I need to continually take mental photographs.

How to Shop For a Wedding Dress When You Have a Chronic Illness

This jersey knit sheath from David’s bridal for $199 is extremely comfortable.

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 to try 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:

– Nordstrom

– Macy’s

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.

Shapewear

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

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 photographer had me take bridal portraits sitting down to save spoons.

The Spoonie Wedding

Imitation meteorite band for my husband with my diamond baguette ring on my Texas themed bouquet.

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.

The ceremony space that later doubled as a dance floor, AKA my parents living room.

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.

The very fabulous vegan cake that got compliments from the non vegans present.

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.

My glittery yet still simple wedding dress that was comfortable but forgiving.

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!

The send off in the rain (yes, it rained on my wedding day).

Blunders

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.

Flower dog 🌸 🐶

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.

Let’s dance the night away forever.

Are you chronically ill, differently abled, or a general Spoonie planning a wedding needing support? Check out my Facebook group, Differently Abled Wedding Planning Support Group.

At this group, you can find support from other people whose needs may be different from the mainstream and brainstorm ideas, find support from stress, and connect!

Continue reading “The Spoonie Wedding”

Fighting the She-Wolf: Fibromyalgia Painger Coping Techniques From a Weird Hippie

I had a great day today, filled with productivity, intimacy with my fiancé Bear, a side quest to find cake balls, and the two of us pretty much telling my parents I was moving in. They took it as well as you could expect a preacher and his wife could.

Bear and I celebrated all night long until it was bedtime. I was sure that my alter ego, the She-Wolf, would not appear as I had such a wonderful day. I was wrong.

What is the She-Wolf?

The She-Wolf is an irrational, bitter, negative version of myself that exists around sunset til 12pm the following day. Symptoms of lycanthropy include extreme anxiety, nervous chittering, catastrophizing, only seeing negative outcomes, thinking someone said horrible things, general paranoia and moodiness.

My mother coined the term lycanthropy two days before Bear and I initiated operation secret move out and called me a She-Wolf. As a Technical Writing major I wrote an actual step by step procedure on how Bear could deal with me as a She-Wolf. Becoming a She-Wolf with the onset of fibromyalgia pain worsening in the evening and realizing this made me and Bear realize I needed to book it out of the ‘rents place.

The She-Wolf Does Not Rest

As previously mentioned today was great, and I was not symptomatic at 5:30 as usual. She-Wolf didn’t come barging in until 10:30 and Bear and I were trying to sleep.

In Bear and I’s house we each have separate office spaces. Mine contained a new order of books, one of which was Heal Your Body by Louise Hay. I previously read You Can Heal Your Life by her and thought it was fascinating, a new viewpoint I had never heard before.

Hay’s book contains a diagnostic list of diseases and affirmations to be recited in a mirror. I went through and said anything that applied in the mirror by my desk and I felt She-Wolf backing off. This took about 30 minutes.

Next I brewed some chamomile tea and tried to softly sing a song in our kitchen. I drank it and went through the affirmations again after becoming thoroughly depressed while reading Being Well When We’re Ill by the theologian Marva Dawn. I’m sure I’ll sink my teeth into it later but when the She-Wolf is rising I need something fluffier. I think I need an All the Shit I Am Reading post soon.

Finally, I used my green aventurine stone and did a two minute meditation after playing with my crystals.

I felt safe enough to go back into the bedroom, but the She-Wolf came back after my rib cage cried out upon lying down.

I am back in my office and have just recited the same affirmations from Hay. This seems to be a rinse, lather, repeat thing. At least it keeps my She-Wolf away. But my lack of sleep is here. However, I felt a storm blow in so that may amount to something too.

My Identity Outside Chronic Illness: Simple Vanilla Cake

I’ve begun doing affirmations in the morning and evening. Finally, for the first time in weeks, I was able to do a yoga routine yesterday morning. The happy feelers were abuzz and I knew the sun was shining on me. I was absolutely not going to waste this gift of a day sulking in bed or in my armchair. Today I was going to create.

Today I was going to do something I truly loved.

I have been a vegan for 8 years. During college and my single years I would bake intricate vegan recipes and deliver them to churches and other charitable events. As I baked this cake I planned my married baker gal goals in my new house in my new neighborhood. Before my illness I baked too much to eat everything myself. Recent news of my gallbladder means I really shouldn’t eat much baked goods, so I’m researching organizations in my new area that could use an ever loving Spoonie full.

Without further adieu, may I present the debutante:

Simple Vanilla Vegan Cake

Ingredients

1 1/2 cups all purpose flour

1 cup turbinado

1/2 tsp salt

2 Tbsp rice vinegar

1/2 cup vegetable oil

1 Tbsp vanilla extract

2 Tbsp confectioner’s sugar

Directions

Preheat oven to 350 degrees.

Combine dry ingredients in a bowl and stir in the wet. I used an old hand mixer from the 1950s I picked up at a thrift store.

Pour into a greased 8”x 8” pan and bake for 30 minutes.

Remove and cool for 15 minutes. Sprinkle confectioner’s sugar lightly with a spoon as seen in the picture. Optional: top with blueberries and a mint leaf.

This was adapted from I Can You Can Vegan. I didn’t have all the ingredients, so I improvised. It turned out tasting a little bit like funnel cake. If you have Coco Whip available to you, it could also make a great topping instead of the confectioner’s sugar. The texture was spongy and this would be great piled high with plenty of fruit!

So, my fellow Chronic Illness Warriors, happy baking!

Grace and Gratitude

The Bouquet that started it all.

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.