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.

A Disabled Body is an “Every Body”

I love my beta readers. Without them The Disability-Friendly Wedding Planner would not exist. Most of them are my family, so I owe them my life. However, I struggle with my beta readers from an ideological standpoint. This is something very real.

Before the book changed its name and content, my beta readers were great. They still are great, but with much crappery.

When the book transitioned to The Disability-Friendly Wedding Planner, things changed between me and my beta readers. I told my beta readers I wanted to include men, they responded men weren’t to do any wedding planning. Then, when I said I wanted to include genderqueer people, they responded with, “But they already have wedding books. Everything is already about them. You see them everywhere.”

Them. Them should be a curse word, unless you’re referring to gender-neutral pronouns.

We live in an Us vs. Them world, where many people see themselves as an US, while everyone else is a THEM. Thems are subhuman, immoral, and undeserving of what US have. Us are kind, intelligent, noble, moral, and good. Us deserves their rights and protection.

Ultimately, Us does not understand Them.

There is a way to be a Them on multiple levels, an Us on multiple levels, or partially an Us and partially a Them. This is called intersectionality – the blend of a person’s social identities that either brings them a cocktail of power and/or submission.

For queer disabled folx, they have many blends of social identities that make them a big ol’ THEM to the white, cisgender, Christian folks that have been volunteering to read my book.

Not everyone like that THEMS folx, but a few do. I hope with my book, the thems of the world are exposed as US to somebody – a lot of somebodies – and eventually everyone.

Good day.

If you are a good person, hit me up in the comments. Please help me with my project. Please please please. Even if you aren’t queer, if you have chronic illness or a disability, this project can help you. This book is a traditional wedding planner for everybody – and I mean every BODY. A disabled body is an every BODY. People never realize it, but in the blink of an eye, the progression of age, anyone and everyone eventually becomes disabled. Just think of your 80 year old grandma, or how I went to athletic and active to occasionally using a mobility aid and unable to walk my dog.

A disabled body is an every BODY, so the book includes everybody.

National Mental Health Awareness Month: Trichitillomania

This month is National Mental Health Awareness Month, and I’ll most likely be posting quite a bit about mental health, as I typically do.

I entered the mental health world when I was 12 – I was being bullied at school and my parents didn’t believe me. Eventually I developed trichitillomania because I was being bullied for my hair, which I grew to hate.

Trichitillomania is compulsive hair pulling. My self-hatred and misery led to a golf ball sized bald spot on the back of my head that I covered by gathering what I had left into a ponytail.

I never particularly cared that I was depressed, angry at my parents, or that I had trichitillomania – I just wanted someone to do something about the bullying. My boomer parents expected me to punch somebody in the face and be done with it. If I had done that, I would have gotten into a melee with the entire school. Besides, it wasn’t in my nature to throw hands.

My mom noticed the pile of hair by my bed growing ever higher, and took me to the GP one afternoon. He promptly referred me to a childhood psychiatrist, who barred me from therapy until I was on stable medications.

I just wanted someone to talk to. I didn’t perceive any of my so-called friends at the time understood what I was going through, and if they did (they most likely could but were unable to articulate, this is middle school here) and would have happily opened up to a therapist. But Dr. Whatserface? No.

Over the course of two years I would come to take 13 different pills a day… all for my mental health. Within four years I would receive a bipolar diagnosis.

Ten years later I developed chronic pain, which has been linked to bipolar meds I can’t get off of for the sake of my functionality.

Eventually the docs would tell me that all the chemical grief I went through as a child and teenager was unnecessary, but hindsight is 20/20. You live with what you are and what you become. Own it.

I hope this article helps a teenager or parent before hauling off their moody but normal kid to the psychiatrist.

Conducting Research: THE DISABILITY-FRIENDLY WEDDING PLANNER

The whole point of The Differently Abled Bride Guide is to help people. I want to help people by letting them know they are not alone, provide practical advice and inspiration, and ultimately show the world we exist. We are here, we are loved, and need to be treated fairly.

While I’ve been promoting and asking for research for grooms, a kind fellow member of the Chronic Illness Network informed me that Differently Abled is a slur. When I was in University, before I became disabled, I learned that Differently Abled was how to refer to a disabled person.

I admit that I grapple with the term disabled, as I assume many do, which led to the original title of the book. Usually I rejected the term because of able-bodied friends throwing shade at me or they could not believe that the high achieving, hyperactive, goal-oriented girl who wanted to save the world couldn’t go to the grocery store without a mobility aid because…. she had some Whiner McBabypants fake disease like fibromyalgia. People with fibromyalgia weren’t “supposed to have this problem.” I had something else, it was my husband, I should be a better vegan… You know, I’m sure, if you’re reading this, how it goes.

Honestly I wanted to be able to catch those with invisible disabilities who didn’t have the image of disabled in their heads in this book as they are covered as well. The book also covers wheelchair users, paraplegia, the blind, the Deaf, and other classically-thought-of nomenclatures of disability.

The project is renamed The Disability-Friendly Wedding Planner and will cover brides, grooms, and non-binary folx who are disabled. I need people to interview, so please consider contributing to the project.

If you would like to help my project, email me or comment on this blog.

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.

Self-Encouragement

I’m not looking for feedback but I feel this is the classiest one, as the watercolor accessibility symbol is gone.

In the past, I was an art student studying graphic design. It was my dream to create beautiful things for others. But then I dated some jerk who told me I was too fragile to spend time in the studio without him, and I switched to the liberal arts.

It was the greatest regret of my life. I vowed that I would never let anyone or anything keep me from achieving my goals.

As some of you may know, I’m in the process of being published. I will be talking about this a lot for more than one reason, namely because it’s an emotional rollercoaster, and anyone who reads this blog knows I am pure emotion. I am 100% F in the INFP.

My post yesterday revealed the staggering amount of rejections I received in a month as well as someone attempting to con me. I’m not giving up, but I do need self-encouragement on my journey.

A weird thing I like to do is go back to my art roots and design dummy covers. Every morning I design about 6 and choose one to three that I like best. I choose my favorite to be my wallpaper on my phone and computer, and the grand slam of the week is printed out and taped to my desk. It helps me imagine a book on the shelf.

I have a creative vision of what the book will look like: delicate, cute watercolors. Because the book covers so many different types of conditions, I wanted a classy way to be inclusive. No bodies will be represented with images. No mobility aid depicted in a pictorial form. Just symbolic representations of what it means to traipse along the wedding planning process in a whimsical way. The book is full of whimsy.

The book needs to communicate that the differently abled, disabled, and chronically ill are people who are loved. People love us. The world needs to know that.

And with my pep talk, I hope you are looking forward to the weekend, and have a happy Thursday.

Not Giving Up

NOT a novel

When I first shared my covers on Twitter, there seemed to be some confusion about “the brides different ability.” This discouraged me a bit about my communication skills. I think this is partially because I am keeping this project a little bit under wraps.

The Differently Abled Bride Guide is a wedding planner book for women with chronic illnesses and disabilities. Differently Abled is the PC term for those conditions, as either of those groups can define themselves as disabled, not disabled, or differently abled.

I am trying to create a one-stop wedding planning resource for women with conditions ranging from fibromyalgia to paraplegia and everything in between. This is why I have been conducting so much research. I want accurate and inoffensive information.

Yesterday, I had some discouragement. I was approached by a publisher who asked me for $20,000 dollars to publish my book.

I’ve never even spent that much on a car. That is a fancy car to me.

This came immediately after my favorite publisher rejected me. So far I have 12 rejections in a month.

I know what I am doing is risky and out of the ordinary. My friends were so encouraging. But I’ll stick to it.

Don’t give up y’all. Some day we’re all gonna change the world. We’re gonna help people.

My PIXAR Movie PTSD Metaphor

rainbow background with text"what's your metaphor? my pixar movie ptsd metaphor. spoonielifestyle.com"

You live in a black and white world except for four colors: red, green, yellow, and blue. As you look around in your periphery you see patches of green, yellow, and blue if you don’t have trauma. If you do have trauma, you may sometimes see a spot of red that engulfs your vision. When that happens, you collapse backwards.

Every day of your life you wake up a new person. For every past day of your life you have been a different person tainted with the different colors of that day. Each time you wake, you are a grey, blank slate ready for the day. Your past selves wake too and follow you in a line in chronological order.
Let’s say you and your past selves get on a yellow bus with mostly blue passengers, but you pass a red building. Suddenly, you collapse backward to the person who saw red in that building on one particular day. Your present day self is gone, and you begin to shake.

This can happen for other memories too – perhaps autumn leaves make you see green, and you acquire green for that day and all your past selves with green autumn leaves collapse backwards and you collectively enjoy the leaves together.

See, I always thought people were always more than just who they are when you meet them or greet them for the day. They are moments upon moments of themselves. This is how I’ve tried explaining PTSD to my husband. I think it’s working.

Do you have any PTSD metaphors?