Stephanie's Life of Perservenance

Nov 12, 2017

By: Stephanie


Finally, I was diagnosed at the age of 14, after many years of doctors telling me it was all in my head and IBS. I have had 16 major surgeries in the past 15 years. First being Pectus Excavatum. Others included gallbladder removal, Hiatal Hernia, lung (wedge reduction, stapling holes in my lung), back surgery to appendix.
In 2007, I got down to 54 pounds (no joke) and even died for a few minutes. The positive point on that was I got to see Heaven and have become more connect with the spirital realm. After months of fighting with doctors who thought it was just an eating disorder, I ran into an ER doctor who determined my Celiac Disease caused my gastric gland to overact. With medication I started putting the weight back on.
I had back surgery in 2008. My pain doctor decided to give me a nerve block. The block inflammed the surgery area. The pain clinic was treating my pain until the weekend where I was then sent to the ER. The ER doctor treated me like I was druggy even though I kept telling him to call my pain doctor. He told the nurse to do whatever to get me out and not come back. The nurse came in with a muscle relaxer injection and stabbed it in my right thigh. She didn't even clean the area. To make a long story short I ended up with Staff and MERSA. I ended up having surgery where I could see my tendon and muscle b/c the hole was so large. After a couple of months my pain was getting more intense and then it started spreading. None of the strongest pain meds were working. I had severe burning to the point my leg would form blisters. Sometimes it would get so cold it would turn dark purple. My pain doctor wasn’t able to treat me because he was starting his own practice. Finally, after a few months, my pain doctor was able to diagnose me with Reflex Sympathetic Dystrophy. He gave me a sympathetic nerve block which took the pain away completely, but it only lasted for a week. For a year, I did every week then every other week for 2 years and then every three weeks for 2 years and now I am every 4 weeks. Then for I went to every 3-5 weeks. Now I don't get nerve blocks anymore.
On a positive side: For 13 years I have worked at my local community theatre assistant directing, working backstage and directing. I received a 700+ Volunteer award, two 500+ Volunteer award, and two 250 Volunteer award. I was awarded the Norma Brink Combined Theatre Award and Scholarship.
I am working a degree in Film, Theatre, Business, and Marketing. I was given a seat in the National Society of Leadership and Success where I received the "excellence" award. In 2013, I became a member of the Alpha Sigma Lambda for being the top 10% at Davenport University. In 2014, I was on President List for getting a GPA 3.96. In 2016 I graduated with my Bachelor of Fine Arts Degree in Film & Media. I am now working part-time at Compass College of Cinematic Arts tutoring and teaching students. Now that I wasn't getting any school loan money and I had to pay my bills. Getting onto disability takes time, so I had to get a part-time job. Luckily God opened up a position at the college I graduated at. I am working part-time and have been working now for 4 months. I don't know how long my body will allow me to work but all I can do is take it one day at a time. I also have my own YouTube channel called “Entertainment For All Network”. It is a channel with variety. I even have some amazing Gluten-Free recipes. I also sell amazing $5.00 Paparazzi Jewelry at https://paparazziaccessories.com/69052 that brings in a little extra fun.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Do I have Celiac Disease?

How do I know if I have Celiac Disease?

Celiac Disease advice

Which advice would you give to someone who has just been diagnosed wit...

Celiac Disease and depression

Celiac Disease and depression

Celiac Disease life expectancy

What is the life expectancy of someone with Celiac Disease?

Celiac Disease is also known as...

Celiac Disease synonyms

Living with Celiac Disease

Living with Celiac Disease. How to live with Celiac Disease?

Celiac Disease sports

Is it advisable to do exercise when affected by Celiac Disease? Which ...

Celiac Disease treatments

What are the best treatments for Celiac Disease?