The Fight Inside
Dec 2, 2
When I was 13 years old I spent at least one week in the hospital every month from February all the way to January of the next year. Every time, I was transferred to a pediatric hospital and then to a Women's hospital, and then pack to pediatrics. This cycle became normal and I expected it every time I was to be admitted. Symptoms of Behcet's Disease first appeared in my reproductive tract, so bad to where I couldn't even use the bathroom or sit down. Every admittance was the same. Run every blood test known to man for STDs and assume it was herpes or HIV. I knew that the ulcers were nothing of that kind (I hadn't even ever had a boyfriend!), but the doctors never did believe me, nor did they believe the blood tests that came back negative, every single time. I had to be put under anesthesia just for something as simple as a biopsy or observation due the severity of my ulcerations. Because the doctors were unsure what the ulcers were or how to treat them, they became so extreme that the ulcers would rupture and lead to surgeries having to suture parts of my reproductive tract. After about 3 hospital visits like this, they discovered that the ulcers would go away with massive amounts of steroids. I was on over 500 mg of Prednisone a day, for over 6 months.
I looked like an inflated chipmunk. My cheeks swelled to where they would cover my eyes if I smiled. I gained weight (20+ lbs) in less than 2 months, but it was only in my stomach; so it looked like I always had a little balloon hidden under my shirt. Also, due to the Prednisone, I developed what is known as striae, or deep scars/stretch marks all over my legs, hips, and back. The reactions I had to the Prednisone are known as Cushing's Syndrome or "Moonface". When I look at photos of me now, I laugh, but when I actually looked that way it was horrible. I had never even been to school before (Homeschooled until high school) and I started my freshman year looking like a fat chipmunk. Not only did I feel different from all the other students, I looked like it. No matter where I went, I was always the test monkey. Whether it was being observed by every single doctor within a 50 mile radius (and then some), or consistently being asked why I looked the way I did. People assumed the worst; they figured I either did drugs or was just retarded. Even at a private school, people don't comprehend how sharp words are. I was humiliated and embarrassed. I learned to build a very large, and thick wall around my heart and emotions. Essentially, I shut down.
My mother began to see the severe affects the steroids were having not only on my body, but my brain. Being a remarkable ER nurse, she knew there was a reason as to why I kept having these ulcers and that there was a better method for treatment. She began researching day and night, for an answer. Finally, in December of 2012, she had narrowed her conclusions to 2 solutions: Behcet's, and a mutation in my T-cells (cannot recall the term). After my next admittance (2 weeks before Christmas) my mother bombarded the doctors with questions, her findings, and an answer. The doctors became so irritated with her they would get into fights with her that there was no diagnosis, just a random occurrence of ulcers and the only treatment was massive doses of steroids. My mom contemplated contacting the Mayo Clinic, and once I was transferred back to a pediatric hospital, that's when we met a doctor that would listen and knew, himself, that was a further diagnosis that needed to be made. This was Moncino. He added to my medication regime, Colcrys. From that point on, I was considered a possible Behcet's patient, but still with no real improved method for treatment.
The next month, January, the ulcers had moved to my digestive system, mainly my esophagus. the ulcerations were so severe that I could no longer eat or drink or anything. I was admitted to a pediatric hospital, where Dr. Moncino fought for me to stay. After I had been confirmed to stay at the children's hospital, Moncino assembled a team of Doctors devoted just to me and coming up with an affirmed diagnosis and treatment prognosis (Keep in mind, it had been over 3 days since I had eaten or drank anything). He had composed the team of doctors all across the country and even some from the Middle-East. I had a pediatrician (Moncino), ophthalmologist, Infectious disease, dermatologist, OBGYN, neurologist, rheumatologist, ENT, psychologist, and gastroenterologist. Moncino, gastroenterology and rheumatology lead the team. Lewis, my GI, conducted an endoscopy under anesthesia to insert an NG tube and perform a biopsy. Moncino, Lewis, and Vogler (rheumatology) fought for an answer. For two weeks while I was in the hospital, they searched day and night for a solution, they checked in with me daily. They even flew in a rheumatologist from Turkey, familiar with Behcet's to examine me (where we discovered the blood test). In January of 2013 I was diagnosed with Behcet's Disease. I was blessed to have such a strong team of intelligent, and hardworking doctors to be diagnosed in less than 3 years; I know it can take more than 10+ years to ever get a positive diagnosis. After the blood test and biopsy came back, Lewis, Moncino and Vogler began a new medication regimen. After long consultations with the doctor from Turkey, NIH, and the Mayo Clinic, they came to the conclusion that Remicade would be my best option. I was now on 9 different medications. I was discharged two weeks later from the hospital with a new plan of action and several follow-up appointments with each doctor.
My first infusion was that February. I was then gradually weaned off the Prednisone over a 2-month period. 5 months later, I had seen all my doctors again, and my Behcet's was finally under control. I'll spare you the rest of the details since my story is so extensive already; but essentially, from then to now, the plan of action has remained very similar and kept the Behcet's at bay with only usually one, one week, hospital admittance each year instead of one each month. As i mentioned previously, the steroids and Behcet's affected my brain. I had an abnormally low amount of serotonin in my brain due to the steroids and small traces of vasculitis due to Behcet's. 2 years ago, I began having non-epileptic seizures (an entirely new, long process all of its own) and now have a pretty fair control on that as well. Last year, I became allergic to the Remicade, so a new regimen was considered, but thankfully, am still receiving the Remicade alongside several other medications to prevent a reaction, and a close eye during my infusions. Last month, I was able to stop taking the Imuran completely (150mg to zero in a course of 2 years). 6 months ago, I was put on a strict Gluten-free diet to my intolerance to almost any food. I am also now on a limited dairy diet and trying to reduce my sugar intake (it is so hard because I love candy!).
There are still days where I fight to overcome the monster that is known as Bechet's. It has taken its toll on me in more ways than I can explain or have mentioned. I do still feel different than kids my age, and some days are much harder than others. However, I have reached a new level understanding and acceptance of my disease, and embrace it as a part of my life. I like to consider myself a tiger; I am scarred, but I am strong. I attend high school, college, maintain a part-time job, pay a full car payment on my own, stay actively involved in my church and school (volunteer work, organizations, leadership, sports), and have a new passion to inspire and help others like me. I am devoting my life to improving others.
Thank you for reading my story and I hope that it has inspired you and encouraged you to stay different. Fight for what is right, be thankful for the insignificant things, find something to love in every day, and love like you want to be loved.
Please contact me if you have any questions, would like to share your story, or just need someone to talk to
Thank you for sharing Ruth balbirnie another Tiger from Ireland
Thank you for sharing your story. My story began along similar lines at first, althougth not quite as severe. My vaginal ulcers also began monthly at age 13, and were so bad that my labia would be so swollen that I could not walk and I would have to stay home. The doctor never tried steroids that I remember, but maybe he did, I remember there was some kind of ointment my mother had to put onto the ulcers for me, a lovely experience for a 13 year old right there, so that it was exactly on each sore. I do remember that I had this happen for a full year, this was the 70's, and finally the doctor told my mother if it happened again he would be forced to hospitalize me and just like that it weirdly, at least the vaginal ulcer part, went into remission, until I gave birth to my second son a few months after his birth, when I was 31. But during this time I still experienced mouth ulcers, bouts of extreme fatigue, and joint pain that my parents would brush off as whining, and my older family doctor was not connecting the dots in this puzzle. No one was thinking that an autoimmune disease could be a possibiliy. I also had severe depression all thIrough high school, college, and the beginning years of my marriage in my young 20's up until my daughter was born, and in becoming a mother I chose to save my own life in order to be the best mother I could be, and finally allowed my husband to take me to a psychiatrist, despite my fears and the cost. The antidepressant that finally worked, Remeron, after several ones that failed for different reasons, changed my life. Not only did it help my depression, but it allowed me to finally get consistant sleep, which was a huge help with my fatigue and joint pain, obviously, right there, so I had a few wonderful years with my husband and daughter. Then when my son came, one Sunday morning I came home from church and collapsed on the couch for a nap. My son was seven months old. I woke up 12 hours later, and I woke up 12 hours later and have never been well again. It woke up the monsters of what is now four autoimmune diseases, the Behcet's, which my ob-gyn became an expert in by spending sleepless nights online scouring medical journals looking for answers as to what might be the cause of my newly awakened vaginal and oral ulcers that were so bad she had never seen anything like them. And before that my rheumatologist was already looking for answers for my severe joint pain and fatigue, and intially diagnosed me with rheumatoid arthritis, and I went through Imuran, Remicade and plaquenil and of course, prednisone. He added a young partner to his group, and she thankfully became my doctor, and has been ever since. She realized that I am allergic to Remicade and she changed my diagnosis to lupus, and tried Rituxan, which I was one of the first patients they tried Rituxan on to treat. She is very knowlegeable, and very kind, and she also is very thorough in researching new treatments and trying them. She finally sent me for a second opinion to the University of Pennsylvania Hospital's Rheumatolgy department for a second opinion, and that rheumy gave me a diagnosis of Mixed Connective Tissue Disease along with my Behcet's. My rheumatologist then started cellcept, which along with prednisone has got my labs under control for a good five years now. Before that, with the Imuran and with the Remicade, and I had also done a stint with Cytoxan as well, I forgot, I have been hospitalized with kidney failure three times, and once both my white and red cells dropped into such dangerous territories in the hospital under neutropenic precautions with infusions My liver enzymes have been pretty high before, and I had a time where I had autoimmune hemolytic anemia, where I had to have a series of IV iron infusions. But now with Cellcept my labs have been clear of that stuff for years. But last year and this, I have gained both rheumatoid arthritis, officially this time, with a real positive rheumatoid factor, not a "zero positive" and also a Sjogren's diagnosis. I also have fibromyalgia, with all of this, gastroparesis, long and short fiber neuropathy all over my body, and Type 2 diabetes. My teenage son says I collect diagnosis's like bottle caps. Over the last two years I have developed a new collection of neurolgical symptoms: memory issues, confusion, intense bee stinging everywhere, falling asleep instantly, dreaming while awake, and this awful ice water feeling inside my head that actually feels like icy liquid sloshing around inside in there that is quickly followed by icy feelings up and down my muscles in my arms and in my body. I also passed out for an hour in our bathroom. And I have been having a constant weird tension/tightness in my head and neck. This has gotten so much worse since just May that they are finally doing a lot of tests this month, and it is very scary. I am also getting a wheelchair just for when I need it, sigh.
