BIG Project Reveal: The Differently Abled Bride Guide

Those of you that follow this blog closely know that I have been hinting at something big. Something huge that I’ve undertaken, a research project that I hope will change the world.

It’s called The Differently Abled Bride Guide.

I came up with The Differently Abled Bride Guide after mourning my own wedding planning experience and still grieving my diagnoses. What I wanted to do was use these two strange experiences to help other women.

In the media, the female disabled body is never portrayed, and when if it is, it is pitiful or evil. There is a lack of understanding from the outside in, and ultimately a lack of representation. More specifically, there is absolutely ZERO representation of disabled women in the bridal industry.

I decided I would write a book about this phenomenon. I’m almost there. All I’m doing is waiting for permission from the people I need it from and to get in contact with an editor.

This book I intend to go the traditionally published route after I was inspired by friends and professional book people in my circle to do so. I had originally planned a KDP book, but after I shared the idea in real life and was met with high praise, I decided to learn how traditional publishing works. As a result I am now a member of my state’s premier literary society.

It’s been a wild ride, and if you’re interested in learning more or helping out with the research, you can email me.

As always, I designed an amateur book cover using a commissioned watercolor used in the book by redlittleberry who, authors, if you need illustrations is fabulous. My book covers are always meant to be motivational for myself. I think these 4 book covers turned out pretty well. However, I could use a little sensitivity. What do you think? Offensive?
The last thing I want to do is hurt someone, so please give me feedback. Note: this book is an all-inclusive look at people with chronic illnesses and varying abilities.

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.

Gasping for Air

Many times I wake up at 2 or 3 AM gasping for air. It takes me a few minutes to catch my breath. The whole time this is going on, my husband is fast asleep beside me, oblivious to the world.

I don’t know what a marriage is, other than it’s a struggle. Sometimes huge explosions happen in a seemingly innocent manner after dinner to be repaired in the kitchen in the morning. There are those times when the explosions last for weeks. Usually that’s because I can hold a pretty hefty grudge.

I don’t want to put myself down. I don’t wanna put anybody down. But it’s down to yourself to get up out of the muck and mire.

Jesus said, “Pick up your mat and walk!” If you want it, you have to receive it.

Those are my thoughts of the day.

These thoughts are echoed in my book, It’s Okay, Magic Happens, available in print and as an e-book.

Collecting Wedding Interviews: The Chronic Illness Wedding Project

I am working on a top-secret super spy project that involves interviewing brides with different chronic illnesses. Anywhere from AFO wearers, the blind, to Crohns, and everything else, I need info about your wedding.

Email me here to get the ball rolling with the subject line “Wedding Info [your condition].”

Thank you!

National Endometriosis Awareness Month: My Story

In honor of National Endometriosis Awareness Month, I’ve decided to share my endometriosis story.

Endometriosis is a chronic illness affecting the endometrial lining of the uterus that causes it to spread throughout a woman’s body. It typically affects older women, but I am 27 and developed endometriosis at age 14.

The first time anyone could tell I had endometriosis was when I was a young high schooler. When I was 14, I bled onto the Youth Pastor’s leather car seat in a Cadillac full of boys. In my youth group I was the only girl, and I was in excruciating pain – and embarrassment. Not to mention I was the Preacher’s daughter, and Preacher’s daughters are to be perfect and not unclean.

We were on our way to a regional convention for our denomination to compete in various disciplines, from bible knowledge to puppetry, and were being quizzed on the book of Ruth in the car. Eventually we stopped at a rest stop on our way to Dallas and we saw the seat was doused in blood. The endometriosis was imminent.

My periods have always been unpredictable. This is a symptom of endometriosis. Age 14 was no different. I had previously bled through at a dentist office to be shamed by the dental hygienist for not knowing my cycle by now, to which my mother yelled at her, “Her periods are irregular!” Thankfully, we both always kept overnight maxi pads on us.

But where was my mother now? She got out of the car and noticed I was woozy, unsteady on my feet, and practically carried me to the bathroom after apologizing to the Youth Pastor, who thankfully had grown daughters. In this gross roadside bathroom stop, I screamed over the toilet as fibroids came flowing out of me. This was the first time in my life I thought I was going to die, endometriosis would claim me, and I begged mom to take me to the ER. She said no, we were on our way to a Jesus conference, and He came first. I needed to learn that.

I was sick and lightheaded the whole time I was there. We didn’t win gold in Bible Quiz. I mostly blamed myself and mom for that. What I didn’t know was that it was really endometriosis’ fault.

To my good mother’s credit, after Easter when we arrived home, she immediately took me to a Gynecologist. They ordered an ultrasound, the noninvasive way to test for endometriosis, and sitting in the lab I was afraid people would think I was pregnant as I downed glasses of water. I was as skinny as a string bean, but suffered from an eating disorder that made me feel as if I was the size of the moon. I went into the ultrasound, and I swore I could hear the technician laughing. I’m sure he wasn’t, but I was 14 and not used to the medical world that would soon become my whole life.

In two weeks, the doctor phoned us in to tell me I had endometriosis and polycystic ovary syndrome. My records have since been lost and no one believes the endometriosis part, but I was recently re-diagnosed with polycystic ovary syndrome.

I do know that the endometriosis diagnosis was real because my mother was there when the doctor talked about the lining found in my ultrasound. She talks about it, and my grandmother and great-grandmother also had endometriosis.

The doctor quickly prescribed birth control pills and the endometriosis improved. However, eventually they stopped working, and I was given a Mirena IUD.

I experienced pelvic pain similar to when I first developed endometriosis, and over the course of six months learned that my body was rejecting the IUD.

I’m now on the Kyleena IUD, and once again, my endometriosis is improving. The tricky thing about endometriosis s that it is fickle – it can love you one day and hate you the next.

According to womenshealth.gov, endometriosis “may affect more than 11% of American women between 15 and 44.” 11% of American women, this is for you. May you feel less alone in your endometriosis journey.