Help Geneva on Her Journey to Being Pain Free

“A journey of a thousand miles begins with a single step.” -Lao Tzu

The Beginning

This is a quote I’ve heard almost all of my life and always tried to remember. My journey has been and continues to be longer and tougher than the average persons, but I’ve made it this far one “step” at a time.

My name is Geneva, I am 32 years old, I was born with Spastic Diplegia Cerebral Palsy, better known as CP. I was born nine weeks premature, weighing just three pounds and later dropping to one pound. By God’s grace, I survived, but was in and out of the hospital the first few months of my life. When I was about six months old, I was taken from my biological Mother and Father due to neglect and many other things and was placed with relatives. The process of adopting me began shortly after, and was a long road, because my biological parents were given multiple “second chances.” During that time, it was noticed that I was not hitting developmental milestones like I should, and by the age of two, I was officially diagnosed with CP. Thankfully the type I have did not affect me cognitively at all, but I am unable to walk, and I’m fully reliant on my electric wheelchair. Having CP has also affected some of my fine motor skills in my hands. My now parents were asked if, with the diagnoses, they still wanted to adopt me, and they said of course! The adoption was final when I was two and a half years old.

Defying the Odds

Soon after the discovery of my CP, I started going to physical and occupational therapy multiple times a week, and I continued it all the way through High School. School was extremely difficult for me because I was bullied a lot, mostly by teachers, unfortunately. When I was a Senior in High School, things really began to go wrong medically. Out of nowhere, I began needing to urinate constantly, at least once an hour, sometimes more, which made it extremely difficult to focus in class. What I thought was a simple UTI turned out to be much worse. I wasn’t getting any better and started to miss a lot of school. However, despite all of these challenges, and teachers mistreating me, I not only graduated on time but with honors!

Everything is Going Wrong

My excitement was very short-lived as my bladder issues continued to get worse, and after repeated trips to multiple doctors and still not finding any answers. I had dreams of going to college, but whatever was happening to me was making it impossible. Then when I was 19, my world was completely turned upside down when my mom, my caregiver, my advocate, but most importantly, my best friend was diagnosed with stage 4 lung and brain cancer. In that moment, everything I knew had been snatched away from me. She fought with everything she had and was declared totally cancer free about seven months later. She relapsed twice, and after that, the cancer never returned. During this entire time and after, I was her primary caregiver, and by this time, I was 21, and my bladder issue was so much worse. On top of urinating so much and constantly having the urge to go, I began having debilitating pain/spasms in my lower abdomen that had me doubled over. I was ready to give up. Then one day, when I was about 22, the pain and urination were so bad that I couldn’t take it anymore, so I had to go back to looking for an answer. I discovered and self-diagnosed with something called Interstitial Cystitis, better known as IC. So, the search for a doctor began, after many failed attempts, I found one doctor that was willing to help me in any way he could. However, after multiple medications, therapies and surgeries, nothing worked. We were so heartbroken, and then he broke the news to me that it was time for me to go to Mayo Clinic to have my bladder removed.

It Gets Worse

Before any of these surgeries could happen, though, in June of 2018, my mom started having more bad than good days due to her extreme COPD, so it was recommended that we start looking at Hospices. My heart was shattered, and all of this stress was not helping my bladder, but she had to come first. On October 24th, 2018, she officially became a Hospice patient. Due to some unfortunate medical mistakes, I lost my Mama on April 24th, 2019, just three days after my 29th birthday. In that moment, my entire world was gone; for almost ten years my entire adult life, I had known nothing but being her caregiver. In a sense, when her life ended, mine did too, because I had nothing else. This was more than just losing my mom this was losing everything!

Everything Changes!

About two and a half months after Mom’s passing, my living situation changed, which was not a good one at the time. So, I had to leave the only home I had ever known, and I moved into an assisted living facility run by The Arc of Putnam County, where I receive help with my daily care needs such as bathing, dressing, toileting, house cleaning, and other things. Adjusting was very difficult, especially while grieving, so I continued to draw, which is something I started doing about a month after Mom’s passing to help me cope. Each day I would draw something related to something that happened that day or a memory and write a little message to her at the top. Shortly after moving in, I developed a bond that continues to grow with my Residential Manager and got permission to throw a birthday party for her. It was then that these messages to Mom turned into greeting cards as I worked with each one of my fellow residents to create a personalized card from each one of them based on their personalities. She loved them all so much and was so moved by them that she suggested I make more and start selling them, and the seed for a business idea was planned. Just a few months before I had my bladder removed in February of 2021, that business idea had the chance to become a reality when a grant opportunity came through the Arc for people trying to start or continue their small business; I was offered the opportunity to apply, and won! And my business Chick -A-Dee’s Crafty Creations, was born! Right now, I sell hand-drawn personalized greeting cards and bookmark sets but do plan to expand to other things in the future.

Unexpected Changes, another surgery, and a Fresh Start!

With my bladder now removed, my urologist and I were sure that it would end my pain. However, it did not. I am in just a much pain, at times even more. We both suspected endometriosis, many women who have one of the conditions also have the other, and don’t know it until later. After several horrible trips to a couple of GYNs, one immediately jumped to hysterectomy, and medical menopause, despite my age, and the fact that Lord willing, I want to have at least one child of my own. After more extensive research, I discovered that a hysterectomy is not the answer because endometriosis can and does very often affect other organs. I kept researching, and I found something called excision surgery that must be done by an excision specialist to be done correctly. As I read more about this surgery, I started to cry because it makes perfect sense to me. With excision surgery, all surrounding organs are examined, and everything is removed from the root. Doing a surgery like this means that the disease only has about a 10% chance of recurring. So, I started searching for this type of doctor, and after reading terrible reviews of ones in my state, I finally found one in Atlanta, GA, that had nothing but amazing reviews. He is confident he can help me. He also believes that my bowel and possibly my appendix have been affected as well. He told me that he believes I have stage 3 endometriosis, and there are four stages in total. This is where I need everyone’s help due to how insurance wants to recognize this surgery the

doctor does not accept any form of insurance. The surgery alone will cost $8,500, not including travel expenses. I know there is no way I can pay for this on my own, but I will continue you to sell my cards and other creations to help with the cost. If you can donate or know someone who can, please share. Any additional funds raised beyond the need for this surgery and travel will go toward anything I need to help me be more independent, and achieving my dream of having my own apartment or owning a home, and finally being reunited with my cat Oreo forever, who is currently in the care of my Dad. God bless you!