I met Megan a few years ago and have been so impressed by her upbeat attitude. Megan and I worked at EFY together, I really enjoyed working with her because she was down to earth and never let a problem get in the way of a person. She is literally a 1 in a million kind of girl! This week she shares her story of being diagnosed with a rare disease and how it has altered her life. Take a minute to read her story and share it. If you haven’t yet feel free to LIKE The People I Find Facebook Page for more stories!
In March of 2007, towards the end of my sophomore year, just a few months after turning sixteen, I found myself running for a class officer position at my high school! I loved high school more than most and life had been going great! Even though life was going great I had an unspoken fear that something bad would happen in my life. I had seen close friends struggle with their home life and a few struggle with health problems. As I saw this in their life I became worried of trials that might creep up. I prayed for months that if a trial was going to affect my family that it would be something that happened to me and not one of my loved ones. I asked God to let it be something I could handle.
One day at school my knees started to ache, I didn’t worry too much about it, surely it was because I had been wearing new sandals and they just didn’t fit right, or maybe it was ‘growing pains’ my friends had mentioned they occasionally experienced. At the same time I started to lose my voice, I quickly wrote it off as a typical teenage politician who had been talking so much to friends and classmates with the election at school… but in the coming two or three weeks I found my conditioned worsened, the pain I had felt in my knees escalated and had spread to other joints. First my elbows then my wrists, then right down to my fingers and toes. It was at that point that it was clear to me and those around me that something was wrong. I struggled to get up off the floor from saying my prayers at night and I couldn’t extend my elbows enough to unload the dishwasher. There was also the itching hands and feet. I remember sitting in class and my hands would out of the blue begin to itch, super weird… I would then watch them in a matter of minutes turn incredibly red and begin to burn. Simple tasks that had just a few weeks prior been easy became harder for me to do and caused aches and pains throughout my body. This caused my parents to become very concerned and quickly scheduled an appointment with my Doctor…
Thus began the months of tests that would ensue. They did blood tests and declared the best they could do was try to determine what was wrong and then send me to specialist up at Primary Children’s Hospital. By the first part of June it was evident that we had a real problem, my joints would swell and stiffen up so much during the night that by morning I couldn’t even get out of bed. The joint pain was so severe I struggled throughout the day to do activities as simple as tie my own shoes, put on jeans or even lift my arms high enough to change out of my clothes. Not to mention my voice had become incredibly raspy and I was constantly getting reactions like ‘oh you must be sick’ or ‘did you lose your voice screaming at a game.’… I was falling apart. The specialists up at Primary Children’s were trying to pin point my illness and give me a diagnosis. Some of the possibilities they addressed included: lupus, diseases within the family of MS, as well as things like rheumatoid arthritis but still nothing seem to explain all my symptoms…and nothing explained my voice, that was just ‘weird’ they said. At that point my lack of voice was the least of their concerns. The biggest problem while waiting to arrive at a diagnosis was that they were unable to really treat the symptoms, problem or pain.
Throughout this process I had remained positive, after all I was grateful that this was something I felt I could handle and a trial I felt I could take on. I was able to trust in the doctors and most importantly my Heavenly Father that whatever was ahead I wouldn’t be facing alone. While we were waiting for test results the physicians told us to take our family vacation to San Francisco we had planned months in advance and to have a good time. That was one of my favorite trips we took as a family, but it was on the long car ride home back to Utah that fear and despairing thoughts began to get the best of me. I began to wonder how much time I had left on this earth, I worried I wouldn’t ever see my senior year, I was sixteen years old and I was dying. Surviving high school was going to be a much more literal task than I had anticipated. It seemed that all my life plans were now up in the air. I thought about how my life would be with this disease, I realized if getting out of bed was a daily struggle how would I ever be able to walk around a University campus or serve a mission, be an EFY counselor like I had watched my brother do, or get married and raise a family. I didn’t know if these dreams I had long had would be achievable in the coming years and I had to be okay with that. We returned home from that family trip and there was a diagnosis waiting for my family. I had something called autoimmune hepatitis of the liver, a rare liver disease that affects about 1 in 250,000 (about 4 in a million).
The liver specialist at Primary Children’s told me the way her and her team saw it was I had 3 options: go on steroids, have a liver transplant or die… and she wasn’t fond of plan b or c. So I was scheduled for a liver biopsy to determine how severely I had been affected and how much of the steroids I would need to begin to fight this disease within me. In that time I was surrounded by people who loved me, countless people from my extended family, community and our church had been praying. I went into have my liver biopsied and we awaited the results. Now I’m mindful that not everyone’s story ends the same way mine did, we all experience healing in different ways. Some healing takes place within us from enduring a disease, other healing occurs from having the burden of sickness taken from us. We received the call that the test results had come back and in that time my liver counts which had been previously high had decreased, we were told from experts in the field that they couldn’t explain it. It seemed that my results of this rare liver disease had not previously dealt with a case that ‘on its own seemed to turn itself around…’ it seemed that we were no longer dealing with a disease but instead a miracle. At first I was doing well enough that the doctors held off in giving me steroids and eventually within two years my liver counts and tests were normal. I still occasionally find symptoms surfacing whether it be joint pain once or twice a year after a strenuous day, but those symptom’s only seem to last long enough to serve as a reminder of the day-to-day struggles I faced 7 years ago.
The conclusion to the story of my ‘nasty raspy voice’, is a little different story from the liver. My lack of voice, or I guess more accurately the presence of a really hard to understand raspy voice I had, lasted for 4 1/2 years! From sophomore year of high school through sophomore year of college… which I mean who needs a voice during those prime identity forming years and when adult communication skills are being learned! Those closest to me were able to understand me… and by that I mean those who stood really close to me could usually make out what I was saying J. The doctors hadn’t really encountered anything quite like it so they said to just ride it out, they had done a surgical procedure scanning for things that could cause such a change but found nothing. I was on medication for a year, I even tried The Little Mermaid approach by getting my first kiss in that 4.5 year span… but nothing cured or even seemed to help. It was decided that it was linked to acid reflux. What we did discover was my voice would be altered by anything acidic I ate so anything that was citrus based or tomato based, even things like chocolate, mint, cinnamon, or too much oil would make my voice leave, which left me with a short list of things I could eat. I eliminated everything in my diet that would be a problem to simply eating rice chicken, peanut butter sandwiches potato chips, milk and water. On this diet for two weeks my voice did come back! Yet one stick of mint gum it was gone again and so I decided to just live with the raspy voice because 16-year-old me was not okay with going out on dates and being able to find nothing I could eat on the menu. Through that time not only was I not able to communicate clearly but often I couldn’t control the volume my voice would come out at when I did speak. People who were consistently around me got used to it and were very nice and understanding, people I just met often in attempt to make conversation said something about me being sick or that I sounded terrible and should be home in bed until my voice returned… I would often just smile and say ‘yeah this pesky cold’ instead of trying to explain what I had been through in the last years trying to get my voice to sound like a peppy 17-20 year old something I was. So often on days when speaking took too much energy I kept any non-essential thoughts to myself, and all my sarcastic or witty quips in. After all it’s terrifying to chance saying something ‘under your breath’ when you don’t know if it will come out at full volume or not at all, therefore all sarcastic comments had to be kept in. Which made for the commentary within my mind (what I thought was) hysterical but no one else around me could appreciate it. However, through this I discovered a lot about communication and about others, I had to fight to be heard whether it was putting forth enough energy to speak or speaking loud enough for others to hear me and so between that and my liver disease I discovered a great love and respect for the days we have to live and the words we choose to speak… and not to mention a deep appreciation for texting.
I have been so blessed to live out my dreams of not only surviving high school, but also attending and graduating college! Within the last year I have gotten strong enough to hike and run, I even passed a milestone of running five miles just for fun this year and even sang in public, These milestones and progress consistently remind me of the profound lessons I learned as a 16-year-old: Diseases are real, but so is God and because of that, so are miracles. How grateful I am for that knowledge. Whether they be a physical disease like a liver disease or a long-term squeaky voice ;), an emotional struggle, a spiritual temptation, a hard family situation or just a rough patch in life, they exist but so does healing and miracles, whether the struggle in your life is removed completely or simply you receive enough strength to make it through the day and endure the trial miracles are all around us.
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