My Journey

The story of Hannah

I like to consider myself a fairly tough person. Raised by a large family, growing up helping my grandparents on the farm I grew up tough. It was no big deal to hear that my grandfather had turned over the tractor again or that my dad had fallen off the roof of our house doing work. My family was not only strong but very successful. I feel they instilled in me great values in life. Not only moral values but the kind that get you through life. Lessons with the hashtag #noexcuses or #don’tquit would now be appropriate for most.

So when I went to college I joined the horseback riding team and immediately declared a major. I was headstrong to accomplish my goals with each of these. Falling off horse, after horse I still made it to the National Championship to compete. After graduating and doing very well in school I landed my first teaching job. I was determined to do everything I could to be the best, after all no excuses.

My second year into my teaching job is when my troubles began. I would wake up red faced, disoriented, with pain shooting down my neck. I would push myself to go to school and sometimes the pain would subside. Most of the time it wouldn’t. Finally, I went to a doctor in the area I was living in for help. She said it was probably just migraines but they would do an MRI. This would be the first doctor who would let me down. After the MRI I returned to her office to find out they found nothing and that I would be fine. She said there is nothing wrong and after a few more visits for the same problem, the doctor began to treat me like I was nuts. I say this doctor let me down, not because she couldn’t diagnose me. But because she immediately drew a conclusion that there was nothing wrong and dismissed me. For awhile I thought to my self, tough it out, no excuses!

After realizing the affect my pain was having on my students I took it upon myself to see a few neurologists in the area. Each one trying me on a different migraine medicines, only to find nothing worked. Each doctor would eventually give me that I cannot help you, maybe you are crazy look! After I got that look, I knew my time with this doctor had come to an end. All of them I feel let me down. After all, I wasn’t even looking directly for a diagnosis. Just someone to believe in me and work with me on this.

After all the failed attempts and even some trips to the ER because the pain hurt so badly my grandparents decided to take me to Cleveland Clinic. My grandfather has an extremely rare disease as well and had a fantastic experience there. The first trip I had every test done in the book. Everything from a spinal tap to an EMG. I met with the doctor to find out basically everything came out normal except the EMG. I also had partial facial paralysis on my upper, left side. After having many doctors look at me even the top neurologist was puzzled. They tried me on a few new medicines (which surprise nothing helped) and then I returned. I saw the same top neurologist, explained to him that the pain was affecting my job performance and that I desperately needed help. After all this I still got “the look” again. The your crazy, go home look. I felt so discouraged that when walking out of the room I began to cry. This doctor in a very smug fashion had the nerve to look at me and say, “someone isn’t leaving a very happy camper”. I just looked at him in shock and disbelief that someone of his stature would say something so cruel, so hurtful after knowing what all I had been through and what was at stake. I rushed my grandparents out of the office knowing if I didn’t one of the two would be wanting to wipe that smug look off his face no matter how many letters were behind his name.

On the drive back to Kentucky I have never felt so low. My grandparents kept the drive entertaining and of course we stopped at their favorite Amish restaurant on the way back for pie. They sure knew how to cheer me up! I was so thankful for them in this journey.

To move along with my story I finally was in my third year of teaching and was able to get a job closer to home. I thought this would make the pain I faced almost on the weekly more bearable. I had been driving almost an hour to and from my other teaching job. The pain started to get so bad that I would have to miss school some. There was even a time where my sweet and understanding principal took my class for me so I could leave and go to the ER. Thankfully with a great team of teachers and principal backing me, I was able to take a medical leave which eventually led me to have to quit my job before the year was up. It was the hardest thing I’ve ever done. Quitting just wasn’t in our blood. I felt like a loser, like a weakling. I wasn’t strong enough to tough it out through the pain. Not only did this affect my work but my home life. In the meantime of all this craziness I had married my best friend and we had renovated a house we bought in the country. We had 7 acres, a goat, a horse, and a dog. I was literally living my dream but the pain took all of the joy out of it all. It all became a burden mostly to my new husband because he unfortunately was faced with taking care of it all because of my sickness.

Eventually we decided to rent our farm and move to Indiana for my husband to take a promotion in his company.After a few visits home my family realized my face was changing somehow and that my pain, well it wasn’t going away. They knew for me to lay at home for days in bed instead of riding my horse or working something needed to change. One doctor who actually turned out to be my saving grace was my dermatologist in Kentucky. She had been documenting my progression and suggested Mayo Clinic. I called many times only to find of course there was an extremely long wait list. This doctor pulled through for me and helped me get in sooner due to my urgent case.

In a few moths I was able to once again make a trip with my precious grandparents to Rochester, MN. They put me through the ringer once again, running every test you could imagine. My grandparents all the while making the trip more like a vacation. Spending time with them always cheered me up and motivated me. After once again, having the EMG come out strange and a few doctors looking me over, I went back to get results. This neurologist was very nice but said he just absolutely didn’t know what was wrong with me. He said to go home for now, to maybe return in after sometime to see how things are going. Once again feeling discouraged we packed our bags and got on the first flight home.

While waiting for our connecting flight in Minneapolis I got the call. The doctor who had done the EMG thought he knew what was wrong and to come back immediately for an appointment with him. We grabbed our luggage and took a bus back to Mayo. That drive felt like the longest ride of my life.

At the appointment that doctor pointed our the findings in my EMG and took pictures of my forehead. He showed me in the pictures a round circle of skin/muscle atrophy that I had honestly never really payed much attention to. He diagnosed my with the beginnings of Parry Romberg Syndrome. After he educated me about the disease I was scared but also partially relieved. Relieved that all the doctors who had doubted me were wrong. I wasn’t crazy, I wasn’t dramatic…this was real.

After having many tests performed it was in fact confirmed that I had Parry Romberg Syndrome. I was linked with a local doctor to give me the meds, photochemotherapy, and monitor me in between Mayo Visits. In the end I realized why it was so important for me to have those no excuses, be tough lessons instilled in me. Without those lessons I don’t think I would have ever pushed through the pain, the dismissive doctors, and the barriers I had to cross in order to get diagnosed.

If you are going through something similar keep pushing until you meet the right people and doctors to help you. I was lucky I had amazing co-workers, family members, and a few great doctors to help me get to this point but it wasn’t easy or fast. Take no excuses or crap from anyone. Don’t stop until someone believes in you, because someone will!