After graduating high school in the spring, I enjoyed my summer at home and then started college in the fall. I attended a public university only forty-five minutes from home. Although the campus wasn’t far from home, I did not have a car, so commuting wasn’t an option. So, I moved into the campus dorms.
At 18 and with my RSD semi under control, I felt I was getting a new beginning. While everyone I went to high school with and most people in my small community knew I had RSD, the people I would be meeting at college would have no reason to know that… or would they?
Freshman orientation at the campus I was attending required all freshman to be on campus the entire week before classes began. I also spent that first weekend on campus. I became extremely ill for unknown reasons. I was having very sharp abdominal pains and vomiting nonstop. I went to ER, but was released and sent back to campus. The first day of class, as I walked across campus the horrible pain came back and I wasn’t sure what to do. A friend saw me and knew something was wrong. She walked with me to the campus health clinic and then she went on to her class. The health clinic wanted me to see a doctor, so they transported me to a nearby clinic. The doctor wanted to “run some tests” so he admitted me to the hospital. I knew my parents were planning to stop by my dorm to check on me later that evening so I called my roommates to let them know I was in the hospital. My roommates all had classes that evening so my parents arrived at my dorm room door to find a note from my roommates stating that I had been put in the hospital. I thought I had signed papers for some medical testing, but I ended up having surgery the first week of college to separate abdominal adhesions. What I had thought was medical tests was actually exploratory surgery. For some reason I had adhesions attaching organs to my pelvic wall that needed to be separated. This is unrelated to the RSD, but one of the speed bumps or hurdles I had to face my first week of college. I healed from surgery, returned to class and everything was going good.
College was finally off to a good start. I was making friends, doing well in class, and having a good time. Being a nice roommate, I often helped my roommates carry their belongings in when they returned from weekends at home. In September, my helpfulness turned against me. As I was helping my roommate carry things in, I fell down the steps in front of our dorm. I returned to see my sports medicine doctor, who diagnosed me with a sprained meniscus and instructed me to walk with crutches and use ice packs. The pain decreased and life went on.
I don’t know what it is with me and knee injuries, but the following April, I twisted my knee again. I couldn’t get an appointment to see the doctor, so I treated myself using ice packs and crutches. That was what the doctor had me do for past injuries, so I hoped it would work this time. Thankfully, it did.
The summer between my first and second years of college, I didn’t take classes. I moved back home and enjoyed my summer with my family. That summer, my severe burning pain returned. I went to see my sports medicine doctor thinking maybe I had injured myself without realizing it. This time, he couldn’t find a problem. It was the Reflex Sympathetic Dystrophy flaring back up.
It was also during this time that I started having a lot of issues with my digestive system. After a lot of tests, my doctor found my gallbladder was sluggish. He felt this was what was causing my pain, nausea, and vomiting. So, he removed my gallbladder. Although I was still limited on what I could eat this did help.
I began my second year of college that fall on crutches. So much for no one knowing I had RSD. The college I was attending was basically built on the side of a hill. Getting too and from classes on crutches (with the weight of a backpack full of books) was nearly impossible. By Thanksgiving, I was not only dealing with severe leg pain, but I was also having back and shoulder pain.
My sports medicine doctor sent me to see a neurologist. Neither of them could find anything wrong with me and agreed the leg pain was the RSD flared up. Apparently the pain clinic I had previously been seen at had shut down, so they referred me to another pain clinic.
I saw this new pain management doctor during the spring of my second year of college. The doctor at this pain clinic wasn’t very helpful. He didn’t believe I was really in as much pain as I reported. He didn’t seem to believe my other symptoms either. My leg wasn’t purple and cold at the time I saw him. He asked me to make it turn purple, as if it was a magical act I could cause to happen. This doctor recommended physical therapy and a psychologist. The doctor wrote a note saying I needed to be withdrawn from college for medical reasons, because the treatment I needed would not fit into my college schedule. This doctor was no help at all and left me feeling frustrated.
My sports medicine doctor sent me to physical therapy and set me up with a psychologist. I was a bit nervous about seeing a psychologist because of a previous bad experience, but I agreed to give it a try. (Note: A previous psychologist several years earlier had tried to convince me there was nothing wrong with my knee. When I had surgery a couple of months later, I asked for the piece of tissue they had to remove from my knee be sent to him. Obviously it wasn’t sent, but I did go back and tell him what I thought of doctors who didn’t listen to and take their patients seriously.)
After six weeks of physical therapy, my therapist wasn’t seeing progress. She suggested water therapy and I was referred to a rehab center with an indoor pool. I went to pool therapy for several weeks and once again, progress wasn’t fast enough and I was released. I must admit, this was disappointing and depressing. This was either the third or fourth time I had been released from physical therapy because I wasn’t progressing and my insurance refused to pay for any more sessions. I was young and had a long life ahead of me. I wasn’t ready to give up.
I went back for my follow-up appointment with my sports medicine doctor to see what we could do now. I was sure he would have an idea. During this appointment, I found out he was changing jobs. He would be leaving to go to another town, farther from my home. His patients would all be transferred to his colleagues there in the same office.
I saw the new orthopedic, but it wasn’t the best experience. I assume he had my notes from the previous doctor, but maybe I was wrong. I didn’t feel this new doctor was listening to me or taking my case seriously. He didn’t seem to believe the pain I was in or that I had been on crutches as long as I had. He said my muscles were not weak enough to have been walking on crutches that long. Knowing all that I had been through, I was not happy with the treatment I was receiving from him. I know my records had to have something in them about the countless number of hours I had spent at physical therapy. At one point in the past, I had no use of the large quad muscles in my upper leg and the physical therapist used a machine to get it to work again. I had spent hours each day at home doing physical therapy and plugged into that machine “jump starting” my muscles. I realize my muscles were weak not totally lost, but he should have had records showing why my muscles were no longer totally wasted away. When he suggested a second opinion, I was more than happy to see a different doctor.
It was now fall and I was determined to return to college. I now knew that it would be impossible to finish the classes required for my pre-physical therapy major. Although I would have loved to be a physical therapist, I was having to miss too many classes for medical appointments and couldn’t keep up in the advanced science and math classes. So, I changed my major to elementary education. With the help of vocational rehabilitation, I was able to get a motorized Pride Mobility Scooter to use to get to and from classes. Walking across campus on crutches, while carrying a backpack full of heavy college textbooks, wasn’t working out so well.
During my third year of college, I went to see the next, which I hoped would be the last, orthopedic. She did x-rays and informed me I had bone loss from being on crutches so long. She also knew about RSD and believed my pain. Could it be that I had finally found a doctor that could help? At this point, I must mention that this is the doctor I would credit with turning things around. She was the last orthopedic I saw. She released me as a patient four or five years ago because she didn’t feel I needed her services any longer..
To get back to my story, this new orthopedic wasn’t able to fix my RSD, but just having someone who actually seemed to listen, to care, and to try to understand and help was something I needed. She referred me to a new pain clinic. I must admit I was a little hesitant. I was tired of being passed around. I was tired of new doctors. I had been to two pain clinics previously: the first kept me on so much pain medicine I couldn’t function and the second didn’t believe my complaints. I hated the thought of a new set of doctors.
I gave in and went to see the doctors at this new pain management center. The team of doctors at this pain management center were just what I needed. The recognized the signs and symptoms of RSD. They knew what it was and wanted to help. They began by trying medicines and nerve blocks.
The next couple of years of my life are a big blur in my mind. Besides nerve blocks and medications to control my RSD, I also began having digestive issues again. I began having frequent episodes of vomiting and severe abdominal pain. The doctors I was seeing couldn’t find a good explanation for my pain and vomiting. They did exploratory surgery and removed my appendix. They said that would at least rule out appendicitis. At times some of the doctors made me feel like they didn’t believe the symptoms I was reporting and that I might be crazy.
I was still trying to go to college and finish my classes. My weight was dropping quickly and I didn’t know what to do. One of my doctors suggested a feeding tube, but I didn’t want that. So, I ate what I could. I lived on a baked bread made by mixing flour with water, baby food, and apple Enlive (now called Ensure Clear). Finally, the stomach doctor sent me for a gastric emptying study, which is a test that measures how fast food is emptied out of your stomach. The test showed my stomach emptying was a little slow so this doctor referred me to a specialist at a bigger hospital… bigger is better, right?
I went to see the specialists at the bigger hospital. They repeated the gastric emptying study and said the results came back normal. They basically made it sound like I was the typical college girl eating and then making herself vomit. I knew I didn’t have an eating disorder. I was eating baby food, baked dough made from flour and water, and drinking a nasty flavored nutritional drink to keep from having a feeding tube. I was not eating and then making myself vomit.
With time, I found things I could eat. I didn’t know why I always vomited up certain foods, but I assumed I must have had food allergies or intolerance. I found that if I stayed away from beef, pork, fresh fruits, fresh vegetables, milk products, and spices I didn’t vomit as much. This really limited my food choices, but if that’s what it took to not vomit, I was willing to do it.
It had been mom, dad, and us four children for quite a while. However, my siblings and I were adults now and it was time for that to change. My brother had met a lady at college and on Valentine’s Day, they got married.
Now back to my journey with RSD. When nerve blocks and medications failed, my pain management doctors suggested a neurostimulator. A neurostimulator is a system with a battery connected to wires that send a light electrical current through your nerves to block pain signals…there’s no medicine involved. The trial helped, so in 2004 my first neurostimulator was implanted. I have a Medtronic neurostimulator. For eight weeks I was unable to bend, twist, raise my arms above my head, lift over five pounds, or sit/stand for long periods of time. Thankfully my younger sister was in three out of the four classes I was taking. If I wasn’t able to attend class or had to leave early, she would fill me in on what I had missed.
I did not attend college during the spring semester. I was physically unable to complete my student teaching at that time and needed to make decisions about what I would do next. Although the spinal cord stimulator was helping with the pain, being on my feet all day made the pain unbearable.
In April, my neurostimulator quit for no reason. The doctor’s were able to reprogram it and get it to work again.
During the summer of 2005, I decided to try something new. Since it didn’t look like I was going to be able to finish my teaching degree, I decided to try for an associate degree in business. I started by taking two summer courses on the internet.
In July my stimulator quit a second time. This time, reprogramming it didn’t work. So, in August my pain management team did surgery to replace the faulty lead wires.
In August, I also continued my college career. Due to surgery, I was limited on lifting, carrying, bending, twisting, and sitting. I was attending classes at an off campus location only ten to fifteen minutes from home. Seeing as I had just had surgery, this worked out good. My mom drove me to class and carried my heavy books and supplies to the classroom for me. During that fall semester, I also found out that due to my disability accommodations could be made to allow me to finish my teaching degree.
During the fall semester, I found out my pain management doctor would be leaving the clinic. He was accepting a job, doing the same type work, in another nearby clinic. This was the doctor who had done all my previous neurostimulator surgeries. This doctor knew my medical history and I trusted him. I could either stay at the current clinic and get a new doctor or I could transfer to the new clinic and keep the same doctor. I chose to keep the doctor I knew and had learned to trust. I must admit, my previous experiences had caused me to have a fear of new doctors.
During the spring and fall semesters of 2006, I did half-day student teaching. Unlike other student teachers, I was given two semesters to complete my student teaching. When illness and pain became a problem during the first semester of student teaching, I was given some time off to get medical treatment. The summer break was much-needed. With my disabilities, student teaching was physically exhausting. The pain and swelling due to my RSD were made worse and at times was unbearable. I would often get home from student teaching and go straight to bed for three to four hours.
During the spring semester of my student teaching, I became the owner of an energetic pup. Well, it eventually became energetic. A stray had come in around Christmas and was taking down mom’s decorations. She put it in our dog kennel and on leap day, we ended up with a litter of pups. Being the soft-hearted, dog loving person I am, I couldn’t let the runt, which was cold and stiff, just die. Like Fern, in Charlotte’s Web, I came to the runt’s rescue and saved it from an untimely death. I warmed the cold stiff pup and took care of it. The pup needed me, and at the time I didn’t realize how much I needed it.
About half way through my fall semester of student teaching, I became an aunt. My brother and his wife, gave birth to a beautiful baby girl.
December 16, 2006 was a big day in my life. Seven years after starting my college journey, I graduated with a Master of Arts degree in Elementary Education. Not only had I managed to graduate, I did so with honors. Due to my health issues, I was still unable to work, but I felt like I had proven to the world that I wasn’t a quitter. The word “quit” doesn’t exist in my vocabulary.
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