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Ashlee’s Story (CRPS)

Ashlee's Story (RSD)My name is Ashlee. I grew up in a small town called Waterloo, Nebraska. My whole 23 years of life I have loved being active with sports and animals. My family and friends also mean the world to me. I have been bowling now for almost 19 years, I danced for about 14, and I played softball for about 15 years, which all are extremely physical sports. In bowling I traveled all over the Midwest and even went to nationals three years in a row, and I was “Bowler of the Year” four years in a row in the state.

I don’t just have RSD but my doctor calls me a “textbook case,” which means I always have the weirdest things wrong with me. In 2001, I had to get my adenoids taken out for the SECOND time, which is not suppose to happen. In 2005, I was having terrible pain on the right side of my stomach. I have a couple dogs and a Clydesdale. I didn’t get my horse until 2007. But back in August 2003, I was 13 years old, and it was my third year going to Camp Pokamoke, also known as horse camp in Iowa. I had gotten pretty used to the horse, Chloe, because she had been the horse I used for the last couple of years. The camp leader needed someone to show everyone else what we were suppose to be doing with some barrel racing. He asked me to go out and do it. All of the horses were lined up on the right side of an arena so I jumped off of Chloe and as I was fixing her reigns so I could lead her she freaked out and her left back hoof stepped on my left foot and she jumped in the air. I was so shocked by what just happened I didn’t know what to do. After she stomped on my foot again I was finally able to get far enough away from her to see what happened. At first I didn’t feel any pain, just numbness, and I wasn’t even crying or anything. The camp director heard what happened and she brought down a bucket of ice cold water for me to stick my foot in.

They called my grandparents who came straight out to get me. When my grandparents were on their way to camp they called my pediatrician, Dr. David Kaufman, to let him know what had happened and what he thought we should do. He said to go straight to the University of Nebraska Medical Center in Omaha. When we got to UNMC we went to the ER. They knew we were coming because Dr. Kaufman had called them. When I was finally called back to be seen, the chief in the ER saw me. I was sitting on the bed with my left leg on the bed. The chief came over with an intern and I told him what had happened (by this time, my foot was three times its size, different colors, and in a lot of pain). The chief did no tests on me, he moved my foot around, even though it hurt really bad when he touched it. He was not gentle at all with my foot. The only thing he said to me was, “Oh, it’s just a sprain. Keep it elevated and iced for two weeks, and you will be fine.” My grandparents and I were so surprised. Me being so confused I asked him some questions, he was short with me and seemed so irritated and starting talking to me like I was stupid. I mean I was young at the age of 13, but I wasn’t stupid.

We left UNMC and when home, I was icing my foot when we got a call from Dr. Kaufman asking me about my foot. We told him what the chief had said and he was livid! He told us he would have to call us back. About three hours later Dr. Kaufman called us back saying that the chief had lost his position at UNMC, and that I need to come see him in the morning. So the next morning my grandma took me to Dr. Kaufman and he took a better look at my foot. He recommended me to a “bone” doctor, and he already had an appointment for me later that day.

So later that day I went to the “bone” doctor, Dr. John Sheehan, he took x-rays and an ultrasound. Everything came up clear, and he knew right away that I had RSD. Though he knew what it was he put me in a cast for a couple weeks, just to keep me from being on it. I couldn’t walk on my left foot for about six months. After that I started what would be a long four years of physical therapy. I have never been in so much pain in my whole life!!! The worst was the hot water-to-cold water in PT. Picking up marbles with my foot wasn’t so easy either.

With bowling being my passion, I was still finding a way to do it. I literally went to the bowling alley, which I practically grew up in, and I would hysterically cry the entire time, just because I couldn’t live without bowling. It will always be a huge part of my life.

From 2003- to present (2013), I have had to deal with some pretty awful pain in my foot. When I was about to graduate from high school in 2008, I was planning to go to college on bowling scholarships, but my dream was killed because I couldn’t stand being on my foot too long.  I knew I had to give that dream up, which my doctors’ had recommended also. Though everyone has problems in the world I have had to deal with a lot, but I am always thankful for my grandparent’s for being there for me and my few friends that stuck by me.

When I started high school in 2004 I really didn’t know anyone there because I was starting in a new school. I instantly made a lot of friends and we had a great freshman year together. Did I mention I was in a small town called Yutan, which was ten miles or so from where I lived in Waterloo. I was in the band, choir, and softball team. That’s how I got to know a lot more people, though it wasn’t hard to meet anyone with just 48 people in my class.

The year before when I was in middle school I had been constantly called a “faker” since I didn’t have a cast on my foot anymore. When September 2005 hit, which was my sophomore year, I was pretty well established in school. My friends and I got into a fight two weeks before homecoming because I didn’t come to school one day because the right side of my stomach was hurting and I had been getting sick. They were mad at me saying that I was faking it and I just wanted to miss school. Seriously? I liked school, why would I want to miss it, and have to make up a ton of homework, cause I never missed school before then. After like two days my grandma said we needed to call Dr. Kaufman to see what’s going on. Since it was so late at night he said to go to the children’s hospital ER.

My grandma and I headed over there and when we got there I was able to see a doctor right away. They took blood and started me on IV pain medication. They ended up admitting me because I was in so much pain and I was throwing up. They wanted to keep giving me fluids through an IV. The next morning Dr. Kaufman came by and he recommended a general surgeon who came by to see me later. It was too late in the day so he said we would run more tests in the morning. That night I had to drink this gallon of gross liquid (to clean me out) and they would do the test in the morning. The next morning came, I had no sleep the night before, and after the colonoscopy they found nothing. They didn’t think I was “cleaned” out enough, so the rest of the day I had to drink more gross stuff and the next morning went for another colonoscopy, and they again found nothing.

Later that day I got an MRI, they found nothing. When the doctor came back to tell me they found nothing, he brought with him a Psychologist. I’m not even joking about this next part, the general surgeon accused me of wanting to miss school and faking my pain, so he brought the psychologist with him. My grandparents were in the room and they were very upset. I started crying because I knew I wasn’t faking it. My grandma called Dr. Kaufman and after he got out of surgery he came up to my room and he decided to do a test on me, because he knew I wasn’t faking it. I don’t know what it was called, but it was the test where you must lay perfectly still and they run a liquid through the IV and it gets all of your organs working, after the test, the general surgeon showed up to my room, started apologizing to me and my grandparents and saying that I needed to have my gull bladder taken out ASAP.

We headed straight to surgery. After the surgery I woke up in my room and the surgeon came to see how I was feeling. I was still in pain of course, but it was already better. The surgeon said that my gull bladder was so inflamed it should have been taken out months ago.

Four months later, January 2006, I woke up that day and I noticed a weird little bump on my right ankle. It kind of hurt and it was itchy. I went downstairs and asked my grandma, she said it looked like an ingrown hair, and that’s what I thought too. But little did I know about four hours later, my ankle had swollen so much that I couldn’t fit it into my sock and couldn’t walk on it. We called Dr. Kaufman and he told us to go to Children’s Hospital ER. So again we headed to the hospital and they started pumping me with fluids. When Dr. Kaufman showed up he took a sample and quickly found out that I needed to be in an isolated room away from everyone, and everyone that came to see me, had to wear masks. I had a brown recluse spider bite on my ankle, which I later ended up getting MRSA, which is a type of staph infection that’s contagious and makes me very easy to catch things from other people, that’s why I was in isolation. Oh and did I mention, by now that I already have a terrible immune system. So after being in the hospital for about a week and a half I finally got to leave. Less then a month later I had a bump starting on the right side of my face and it hurt and it was an instant flashback from a couple weeks earlier.

My grandma didn’t even call Dr. Kaufman until we got the ER, because we knew he would want me to go there. So I was instantly put into an isolated room and as my face started swelling even more, you couldn’t even tell who I was, and I could barely see out my right eye, it was MRSA again.

Fast forward to the future, September 2012, I got a root canal done. After a couple days I was in terrible pain on the right side of my face. My dentist was running out of ideas, so I told her about my RSD in my foot, which was on my right foot. Since RSD stays on one side of the body I thought it could be that. She did research and she agreed. She sent me to a neurologist who then recommended me to the Midwest Anesthesia Pain Management seminar in December of 2012 in Fremont, Nebraska. As a side note: let’s not forget that stress in not a helper for pain. On December 3, 2012, in the early morning, my 18 year old brother died in a car accident  Dr. Raikar right away started brainstorming and over a couple months we did multiple injections into my right face nerves. Nothing was helping. They also have me on pain medication which helps, sort of, but it doesn’t always help. It is now October 2013, I am in school and I work at the Zoo because I want to be a keeper at the zoo. With me being in almost constant pain, from a scale of 1-to-10, I am constantly a 9 pain, everyday, almost all day.

I miss so much work. When it was so hot outside I couldn’t work because the heat messed with my pain medication. Now that it has cooled down, I can’t stand to be in class or at work, because I am always in pain and crying that I can’t concentrate in class, I am a biology major.

I have recently found a research hospital, in Kansas City, Missouri, and I am currently looking into the facial research department.

I don’t want to be a complainer, because I never have been, I know there is worse out there even though I don’t see it. I know I have the support of my grandparents, and they are trying so much to get me the help that I need.

Submitted 10/07/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Robyn

    Ashlee- I am so sorry about your struggles. I also suffer from RSD and am 26. If you need anything or need to talk, please email me at Hang in there! You are a fighter!

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