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Reconstructive Surgery for Kirsten Jacobson

Organized by: Brandi Ricks

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I’m a private person. I’ve always held things close to my chest to protect them from discussion or possible ridicule. I’ve never sought out pity, help, or attention because those have never been things I’m too comfortable with receiving. I’m twenty-six years old now and I have battled a rare auto-immune disease for thirteen years. Half of my life. I realize now that not only am I doing a disservice to myself by not talking about it more, but I am also prohibiting my unique experience to reach other people so they can learn about something they may never have heard of. It started with a white stripe. It spread down the middle of my forehead and it glowed almost translucently. At first it was easy to laugh about. I was confused and it was weird, and I was twelve years old so of course I didn’t take anything seriously. I assumed I would wake up one morning a few days later and it would be gone. I was wrong. It spread from my forehead down my nose, and along the right side of my face. Patchy, white discoloration that made my skin shiny and firm. My parents took me to the dermatologist who gave me creams to put on it, and we helplessly watched it spread over the blank canvas of previously unmarred skin. We managed to get a diagnosis about a year after the onset and after visits to countless doctors. Linear Morphea, my doctor said. A very rare form of localized scleroderma that is characterized by patches of discoloration and atrophy on one side of the face or body. We would later be informed that the specific kind I have is called Parry-Romberg Syndrome. The destructive force had a name, but it did not make me feel any better. It continued to wreak havoc, changing the structure of the right side of my face as the days progressed. I never knew what I would find when I looked in the mirror each morning. If there would be a new spot, if the skin would feel less like my own, if I would still be able to recognize myself. Before I go on, I want to talk about my parents. They are the very best parents that anybody could ask for, especially a young teenager with a hard and confusing disease. They spent hours with me in doctor’s waiting rooms, they drove me all over Texas to see specialists, they even flew me up to the Mayo Clinic in Minnesota in hopes of finding doctors there who had actually seen my disease. There was nothing they weren’t willing to try for me, and money and time were no object to them, even though I knew they struggled with coming up with both. I tried pills, injections, light treatments, surgeries, creams, and any and everything the doctors suggested. Still, the disease did all of the damage it set out to do. It could not be stopped. At some point, the hardness and bright discoloration of my skin went away, and with it went all of the fat in the affected areas. I’m talking about fat that I did not even know existed. In the orbit of my eye, inside my ear, my gums, my tongue, my throat. Everything on the right side of my face that possessed fat had it stolen. This included the fat in my jaw joint that naturally cushions to protect my bones. Because of this, my jaw bones began grinding against each other. I had daily and chronic pain that involved clenching, spasming, and full-on throbbing. I didn’t know at the time, as a fifteen year old, that I was developing severe arthritis. Doctors thought it was TMJ, but countless MRI scans proved that was not the case. I lived with the daily pain for five years before I finally found a doctor who could help me. A maxiofacial surgeon who took the correct scans and showed me that my jawbone on the right side was about a third of the size it used to be. It had been whittled down, pulverized just from daily use. He told me I needed a joint replacement and as soon as possible. Let me go back a bit, though, to my experience in high school with this disease. I was in a pretty steady state of denial that what I had was permanent. I used to have nightly dreams where I’d wake up in the morning and my face would be back to normal. I clung onto that hope so tightly that I lost sight of reality at times, but I sort of think that’s what helped keep me sane through those difficult years, the idea that maybe it was all just a nightmare that I could arise from. As long as I had hope, I could make it through each day. I was determined to not let my disease define who I was or get in the way of the things I enjoyed before it took over. I threw myself into theatre and choir, because singing and acting were passions of mine. I put myself out onstage, even though I felt so incredibly uncomfortable with all eyes on me under bright and unforgiving lights. In retrospect, I think I was kind of trying to prove that I was okay, that I was normal, even though what was happening to me was abnormal. Teenage years are rough on anyone, what with all the changes in your body and confusing hormones, but, with all of my additional things I felt like I carried the weight of the world a lot of the time. I was young but I felt old and worn out, and let me tell you something, I still do. In the fall of 2007 I embarked on a new journey to attend University of North Texas, where I would go on to graduate with a bachelor’s degree in Psychology. It was during my freshman semester that I realized something had to be done about the way I looked. I could no longer do normal things like go get food in the cafeterias, attend class or even fill my car up with gas without people pointing and staring, or flat out asking me uncomfortable questions when they had just barely met me. I was heartbroken that I couldn’t even be a normal college kid, that the disease had started to stop me from accomplishing what I was so set out to do. Between the years of 2008 and 2015 I had around ten reconstructive surgeries including fat transfers and synthetic tissue implants, two total joint replacements in my jaw (there are titanium parts of me that will live on forever), an orbital implant, and other unpleasant procedures. I spent nearly every winter, spring, and summer break during college having surgery. Due to the unpleasant nature of my disease, none of the surgeries have been entirely successful, but I’m grateful to have been able to have them. I’m forever thankful to my mom and dad for making sure we tried absolutely everything. In 2012 I had my right jaw joint replaced, and then three years later in March of 2015 I got my left jaw joint replaced because it had developed arthritis due to wear and tear and overcompensation for the other joint. I also had some reconstructive tissue implanted to the obvious asymmetry of my face. It looked fantastic and I was so excited. I thought that maybe this was it, maybe I was through with surgeons and hospital stays. Two weeks after surgery, I developed an infection. One so bad that I had to be hospitalized for a week to be on multiple IV antibiotics. During this time, my surgeon made the decision to put me into surgery again and remove the tissue he had just barely implanted because it was surrounded by infection. I got two weeks with it before it was taken away. A redo surgery was planned for the following August, but due to the huge expense of my March surgery, we could not afford it. And, at the end of August I turned twenty-six and was booted off of my family insurance where I had more than met the deductible, taking me even further from it happening. I don’t think I can accurately describe to you the devastation that followed after that. I had been counting on that so much, that I didn’t let people’s stares and questions get under my skin, because I thought it was only temporary that I would continue looking like I did. You see, hardly a day goes by now that I don’t get questioned about my face. I can stop by a store for a drink or snack and the cashier will ask me what happened. I work as a hairstylist and encounter new people every single day, and many of them ask me about it. Every person you pass on the street is probably struggling with something, but many times it is unseen. Mine just happens to be right out in the open and therefore people feel like they deserve to know, that my story should automatically be given to them. The people that I choose to surround myself with have always been the ones who met me, got to know me, and waited until I felt ready to talk about what happened to me. They did not try to force it out, and they did not make me feel like they had to know what happened before they could determine if I was worthy of friendship. I understand that people are curious about what is different than them, but, many times I don’t think they realize how much it can hurt. There have been many times when I was having a great day and was besting my insecurities, and then I was taken down so many notches by a simple, offhand comment. Because even something small can massively remind me that oh, right, I’m not normal and maybe I don’t deserve to be having a good day like the normal people. I have been waiting for this final surgery for a long time. Not only will it help reconstruct the many damages the disease inflicted on the right side of my face, but it will help with the chronic pain I still have in my jaw due to the fact that there is no fat around the titanium joint. The idea of putting this all out there and asking for help makes me so nervous, because I don’t in any way feel I deserve the help more than anyone else. But, I want to try, because it would mean the world to me if I were able to afford this surgery. My incredible and generous parents have spent their savings and more on my many surgeries and doctors and they simply don’t have the means to pay for another surgery now. I know it’s a lot to ask, I really do, but I would be so grateful for any contribution, or a share if you aren’t able to donate at this time. Thank you for taking the time to read a bit of my story, I know it’s long and I appreciate your attention. I’m not sad this happened to me, because I know it has had a big role in shaping the person I am today. I just hope to take back some of what the disease stole from me and be able to move forward with my life. All the love, Kirsten



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Brandi Ricks

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2 years ago

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