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.
As some of you may know, I am conducting interviews on brides who have chronic illnesses. This is because when I was planning my wedding, I felt extremely alone. Everywhere I looked, there was no information for someone like me. I knew there must be other girls in my shoes who felt the same way.
My goal is to be as inclusive as possible – it doesn’t matter what makes you differently abled, chronically ill, or disabled, however you may identify – this blog post series aims to shine a light on an underserved group by the wedding industry.
Yesterday, I had the pleasure of interviewing Jenny from Life’s a Polyp. Jenny has two rare diseases stemming from childhood – Familial Adenomatous Polyposis and Short Bowel Syndrome. They give her chronic pain and diarrhea, which can be life-threatening.
Now, let’s go on to the interview!
This interview was lightly edited for clarity and formatting.
Q1. Tell me everything there is to know about your condition & how it specifically relates to you.
Familial Adenomatous Polyposis is a rare hereditary genetic mutation that predisposes an individual to colon cancer due to hundreds to thousands of precancerous polyps developing in the colon at an early age. Those with FAP develop significantly more polyps and at an earlier age than those without FAP. If the FAP polyps are not treated, the individual will inevitably develop colon cancer. Due to the dominant hereditary nature of FAP, the offspring of an affected individual has a 50% chance of inheriting FAP.
There are associated manifestations of FAP as well. These include:
Congenital hypertrophy of retinal pigment epithelium (CHRPE)
Osteomas, supernumerary teeth, odontomas
Desmoids, epidermoid cysts
Duodenal and other small bowel adenomas
Gastric fundic gland polyps
Increased Risk for Gastric Cancers and cancers of the Thyroid, Pancreas, Liver, Central Nervous System, and Bile Ducts
Short Bowel Syndrome is a rare disease that is caused by the removal of or dysfunction of part or all of the small intestine and/or large intestine. Severe diarrhea is common resulting in malabsorption of nutrients and water. This can cause life threatening malnutrition and dehydration.
At age 9, I underwent a total colectomy under the recommendations of specialists due to precancerous FAP polyps beginning to turn cancerous in order to prevent full development of colon cancer. The plan was to have a temporary ileostomy that would later be “taken down” after recovery ending with a jpouch. However, I suffered several surgery complications resulting in the removal of the majority of my small intestine and a permanent ileostomy. During the span of this year, I underwent 5 surgeries and experienced several near-death experiences.
At age 16, I came under the care of a different surgeon and with consultation of my GI specialist, I underwent a 6th surgery to take down the ileostomy and was given a straight pull-thru. The following year, my health unexpectedly began to rapidly decline and I again was not expected to live. After repeated, extensive testing I underwent my final surgery to remove excess scar tissue that was causing a stricture around my intestine. Over the next 5 years, I continued to struggle with my health with frequent hospitalizations and ongoing medical treatments to re-establish my health. I have chronic abdominal pain and nausea due to adhesions, the levels of both issues vary from moment to moment but are worsened by ingestion of food or drink.
Due to the removal of my colon and part of my small intestine, I was diagnosed with Short Bowel Syndrome. This has also been challenging throughout the years as I experience 20+ bowel movements a day that cause my to be able to have quick restroom access as needed. This limits my activities to a degree and is a constant concern. I have medicine to help slow my bowel but it can cause increased pain and even intestinal obstructions so I try to limit its use. I am in a constant state of dehydration in spite of drinking more than 64 ounces a day and require multiple medications in an effort to maintain appropriate electrolyte balance. Years of malnutrition caused degeneration in my neck resulting in permanent neck pain and limited range of mobility.
Q2. What is your wedding story?
I wanted a fun, short ceremony so we had a Blues Brothers themed wedding. The men dressed as the Blues Brothers, the ring bearer had a briefcase handcuffed to him and wore Converse shoes (like in Blues Brothers 2). Everyone danced down the aisle to Blues Brothers music instead of walking down the aisle. My then husband and I were handcuffed to each other when we were pronounced married.
Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?
I researched online probably at least 50 venues comparing prices and the look of the venue. I only went in person to see two venues – one for ceremony and one for reception. The ceremony was held at the Fort Reno Chapel that was a wooden chapel built by German POWs during WWII that we discovered while participating in an annual ghost tour at the Fort. It was a really beautiful building. It was very cheap as an added plus but that was where my then husband wanted. I chose the reception area a few miles away at an event center that didn’t require much of any decorating and had in house catering, cake and DJ so that I wouldn’t have to mess with additional vendors. I was able to pay for a package that I found within my budget so it was a very easy process. I wanted an easy process within my budget and a beautiful venue that wouldn’t require a lot of decorating to keep stress, money and effort to as little as possible.
Q.4 Did you require any special catering?
No. We didn’t have any diet restrictions. We chose finger foods and cake.
Q.5 Did you have any symptoms on your wedding day? If so, how did you manage?
I have chronic diarrhea and pain when I eat so I took prescription strength anti-diarrhea medication to the full dose and I avoided all food and drink until the reception.
Q. 6 How big was your guest list and wedding party?
We invited about 100 people and had 9 in our party. That included flower girls and ring bearer.
Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you?
I didn’t require any accommodations. I had it made from my grandmother’s dress. My seamstress made it into a form fitting mermaid pattern without a train. She kept some of the original features of the dress while adding additional embellishments. I wore jewelry that belonged to the same grandmother and my great aunt to compliment the dress. My mother in law made a mantilla veil for me to wear.
Q. 8 What are 3 things you would like a wedding vendor to know?
One would be if there were diet restrictions that needed to be accommodated.
It would be good for them to know about any mobility issues that may need to be considered for those involved or invited.
Lastly, flexibility where possible such as on timing or ability to take a break from the events to allow for a rest period.
Interested in having your real spoonie wedding featured?
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].”
My book, It’s Okay, Magic Happens, is finally here! Over the course of about 6 years I wrote this collection of poetry. I do believe this is chronic illness related, as these poems are related to PTSD and the general feelings that come with developing chronic pain. I have worked on this for the past week, so please, give it a look over and a nice rating for me. It would be appreciated.
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!
Those who have been on this blog for any amount of time know that I suffer from PTSD. I also believe that it is the root cause of my chronic pain.
There is a lot of evidence that if one has untreated trauma, it explodes into fibromyalgia, and later other diseases. The therapist I work with now specializes in people with chronic pain and their trauma. I am blessed to have found her.
The year following my trauma I began writing poems. I have written poems since 2013 up until today. When I was in DBT I made a writer acquaintance who shared her writing resources, one of which was Scrivener. I got into the program and wanted to see how easy it was to publish on Kindle Direct Publishing (KDP).
It was very easy, however, there were some blunders. I will need to get better and this poetry book is my guinea pig book. Printed in a PDF it’s about 72 pages. I’m still figuring out how to create a print book through KDP.
Anyways, my poetry book It’s Okay, Magic Happens is on the Kindle store. I’m only not linking to it yet because I’m still trying to figure out cover art.
Comment/tweet/contact me with your favorite cover (tell me magical, blue, glitter, or flowers) so I know which one to use.
Thank you so much and I hope you have a wonderful quarantine.
Bear and I only cohabited for 2 months before the wedding (although I pushed for longer) so the good ol’ moving in together strangeness is upon us, besides being married is just weird. Here’s just some of the weird things we’ve done as newlyweds.
1.Fighting Over Pizza
As newlyweds, you will fight. Wedded bliss isn’t exactly a thing where you’re fight free, but one of the sillier, harmless fights is whether or not to order pizza, what gets put on it, et cetera.
2.Random Classy Twerking
You two will just twerk on each other. (It’s classy twerking because you’re married and it’s done in the privacy of your own home.) Whether one of you is in an office chair working at home, cooking in the kitchen, or doing your makeup. Twerking of this kind can be dangerous, and neither of you will exercise caution. Just speak up if you are cooking, putting on mascara, or on a conference call.
3. Never Leaving Each Other Alone
Want some spare time to make a phone call? Need to see your friends? Is your spouse looking over your shoulder as you write this?
Yeah, it be like that.
But would you have it any other way?
4. Getting Frisky In the Kitchen… With the Windows Open
You wake up, make coffee. Wait for him to get up so you can have breakfast together, and well… he is excited to see you. Very excited to see you. So you oblige him a little, and eventually you realize your large windows were open.
5. Incorporating Your Dog Into Your Married Unit
Now, I never officially made Bear Pupper Princess’ Doggy Daddy. I know some girls who make their boyfriends their pet’s dad after a year or so, but I wasn’t comfortable with that. What if she got confused? What if there was a custody battle?
I’ve had my dog for 8 years now. Bear keeps introducing Pupper Princess as our dog. It’s been hard to accept that she is, in fact, an “us” doggo instead of just “mine” now.
Being a newlywed couple comes with many emotions. Anger, lust, adventure, fun, awkwardness… and weirdness, as explored by this post. I assume cohabiters can relate to this as well. Hang on for the roller coaster ride! I hear it gets better!