My name is Ellyn and I am a 22 year old young woman who has been living in chronic pain for the past 9 years. Although many would look at me as though I am a healthy, happy, young, kindhearted, outgoing young woman, my daily life is a battle, but it is most often a battle that most cannot see with the human eye. Although my pain is mainly muscular and physical, such a large portion of it is also mental and emotional pain, which no one can physically “see” and makes many so quick to judge. It is a battle that I continue to fight, regardless of how difficult my days, weeks, months or years may seem. Due to living almost half of my life in chronic pain, I also suffer from severe depression and anxiety, an eating disorder, and have had two total jaw joint replacements within the past 2 years, all due to an unknown autoimmune illness that caused my original jaw joints to quickly deteriorate.
I can vividly recall those days 9 years ago, when I was about 13 years old. I needed to have braces for 3 years to correct my teeth and during the last year of my braces my jaw joints seemed to spiral out of control. Most of you will refer to this or know these signs and symptoms as “TMJ” but that is simply just referring to the temporomandibular joints. My jaw joints began locking, popping, clicking, each time I opened, constantly, all day long, leaving me swollen and never giving me the break I so desperately wanted. I was told that I could not seek treatment until my braces were off wondered how I would ever survive those days. Once my braces were taken off, I was seen by a dentist in Great Barrington, MA, an hour away from home who specialized in facial pain. Dr. Hyman made me several mouth pieces to keep my jaw aligned, I began muscle relaxers and physical therapy and he did everything he possibly could until it was no longer in his scope of work. After seeing him for about a year, I knew it was time I made bigger steps towards finding out what was truly going on inside. I then was referred by my PCP to the pain clinic at Children’s Hospital Boston. After spending an entire day meeting with a physical therapist, pain specialist, and psychiatrist, my mom and I sat down to hear the “results” and their thoughts to my chief complaint of jaw, neck, and back pain as well as my severe issues with my joints. Their conclusion was that “it was all in my head and I just needed to seek psychiatric therapy.” Devastated, depressed, in a state of shock and feeling nothing but warm tears streaming down my face, my first true feelings of hopelessness set in. Thankfully, since “my complaints were so great” they gave me the name of Dr. Nalton Ferraro, an amazing Maxillofacial Surgeon who is located in Brockton but practices at Children’s Hospital, Mass. General, Brigham & Women’s and the list goes on! Thankfully, I landed in Dr. Ferraro’s hands shortly after. His first step was to do an MRI with contrast (an IV of dye into your body) and after having that done, he saw that my jaw joints were filled with Synovial enhancement and his first thought was “We need to get you to a rheumatologist, your joints are showing a significant amount of inflammation and it is my best assumption that you have Juvenile Rheumatoid Arthritis.” Once again shocked, I found myself at not only one, two, but three rheumatologists at Children’s Hospital. After being treated for over 2 years giving myself injections of Methotrexate, Enbrel, having 6 hour infusions of Remicade monthly, trying Sulfasalazine – you name it, my jaw joints continued to deteriorate and before I knew it my mouth went from the average opening of about 40mm down to 10mm.
After finding out my body did not respond to any of the strongest and nastiest JRA drugs, my jaw joints had quickly deteriorated, leaving me with barely being able to fit one finger inside of my mouth. Not wanting to jump the gun, Dr. Ferraro decided to admit me to Good Samaritan Hospital in Brockton, MA and perform a noninvasive procedure of flushing out the joints, looking at the tissues, etc. I recall his words after waking up from surgery, and not knowing how else to say it, he told my mom and I that he knew there was no hope of saving my original jaw joints due to the severe damage, deterioration and abnormal Synovial fluid/tissue within the joints. I then ended up where I thought this journey would never take me. There I was, needing to undergo not only one, but two total jaw joint replacements that I didn’t think I would ever survive. Mentally, physically, and emotionally drained from the several years that had passed, I thought most days it would be easier to be gone and not having to live this life of pain and agony. Depression sank in at full force, I lost all control of my pain, I became fragile and weak, on both the inside and the outside. Knowing that total joint replacements are not only extremely risky, expensive and serious, I also tried things such as acupuncture, massage therapy, physical therapy, using a TENS unit, foam rolling, and a chronic pain management psychologist. I tried anything I could to hopefully decrease the debilitating pain that now defined and controlled every second and aspect of my life with the hopes of no longer needing so many narcotic pain medications to help ease the pain.
It was now time for the day I feared the most, my first total joint replacement using two of my ribs, a surgery that lasted approximately 10 hours and left me hospitalized at CHB for a week in October 2010. Unfortunately that surgery failed within 5 months due to excess bone forming over the left joint and causing the joint to fuse closed. Six months later, I was going through the long and grueling process of having my two titanium joints made at a company in California. They were put in on December 20th 2011, only 14 months after the rib surgery had taken place. Although I did not think I would survive even my first days during my teens when it all began and the pain became debilitating, I did. I honestly feared that I would not have the strength and courage within me to have two ribs sawed out and screwed into my face, but I somehow survived that too. When I found out that the rib replacement surgery had failed me only a few short months into recovery, I thought there was no possible way I would be able to play the “waiting game” of having my prosthetic joints made and survive the daily pain, never mind survive and recover from the 11 hour surgery that I was told would be worse than the rib replacement. The hopelessness, fear, depression, anxiety, loss of control, feeling of loneliness and that no one understood, has eaten me alive since the first day this journey began. When I think about the complete loss of control over my life, my eating and weight becomes the one thing that I am able to control. To many of you, this may seem strange or odd, but it is a control mechanism as well as a mental illness that is so incredibly difficult to stop once it all begins.
The great news is I have survived the past 9 years, the past 3 surgeries, and most importantly, this life that I feel as though I have lost complete control of. Not only have I survived some of the longest, toughest, most difficult days of my life thus far, I have also been a full time college student, who has transferred 3 times, and has never stopped going to school due to my illness and pain. I can’t believe I am able to say these words, but in a few short weeks I will be receiving my Bachelor of Science in Public Health and plan to complete and accelerated nursing program not long after graduation (fingers crossed!!).
For those of you choosing to follow my blog, for any reason at all, will most likely be able to relate if your life too has been “taken” from you and is now controlled and dictated by things such as chronic pain, depression, anxiety, eating disorders, addiction to medications, or whatever your battles and obstacles may be. Whether only one thing or something as complex or even more complicated than mine, you too can gain control over a life you feel as though you have lost control of. For others, you may choose to follow to hopefully be inspired and intrigued, to follow my journey and watch as I hopefully regain control over my life, the one dream I have had for so many years. It may not be tomorrow, within the next several months, or on one of my next “anniversaries,” but I know the day will come. Not only because I have continued to have faith and believe, but because I am a determined, courageous, kindhearted, inspirational, and motivated young lady who deserves to have control over my life, as I did so many years ago, and so do all of you. As I often have to remind myself, I have come much too far to give up now, especially when there is still so much hope of gaining control and living a happy, healthy, beautiful, and less painful life. So to everyone who chooses to follow my hopeful road to recovery or chooses to take this journey with me, here’s to Learning to Live!
I hope you’ll choose to follow my journey! There is nothing that would mean more! To “Follow My Blog” simply type in your e-mail address on the top right side of my page. This will allow you to be notified when I have written a new post and then you may choose to read!
To anyone who has stories to share, words of motivation, encouragement or inspiration, please feel free to do so. To those of you who may want to contact me privately, please do not hesitate!! My e-mail is available and there is nothing more inspiring than hearing a story of success and triumph, offering an ear just to listen, or helping to motivate, inspire, and help you to see the light that most likely seems so out of reach. I encourage all comments, feedback, and stories to be shared! We all have our own journey in life and yours is just as important and meaningful as mine!
Learning to Live 