Back to the barbecue. When I bit into that perfectly cooked kettle chip on that late summer day, I savored its salty thickness at first. But then, I said — ouch.
The sharp edge of the chip cut me on the area between my gums and my cheek. It didn’t really phase me. I thought to myself the mouth heals quickly and it would be gone in a couple of days.
Days passed and the cut remained. I went online to research homeopathic remedies. I rinsed with honey, gargled with a hydrogen peroxide/water mix, chewed basil leaves. If I came upon a remedy — I tried it. Weeks passed by, and there was no change. In fact, my condition grew worse. I instinctively knew something wasn’t right.
When my dentist examined me, she commented on how bad the sore in my mouth looked, but had no idea what was causing it. She surmised it might be Herpes and I completed a prescription meant to heal it. When I went back to see her there was no change — and no ideas what this might be.
I visited my uncle in New York who was a practicing dentist of forty years. He suggested I gargle with salt water and restrict my diet to soft foods. I was diligent in following his advice, but again, nothing changed.
From there, I saw many doctors: my primary care physician, oral surgeons and oral pathologists, rheumatologists and allergists. The feedback was always the same – the inside of my mouth looked horrible, but the cause was unknown. All
I knew was I couldn’t eat anything I used to love.
My diet was eventually restricted to egg whites, oatmeal and protein shakes. Any food harder was impossible for me to eat. Spices of any kind were out unless I wanted to be brought to my knees in pain. I began an investigation of my own.
I spent countless hours on the Internet looking up anything that could help me find the answer. . .what was wrong with me? I became so frustrated, I would leave doctors’ offices and picture them closing my file and moving on to the next patient – possibly shrugging their shoulders. Depression began to set in. This was my health, and I was grasping for answers.
I saw another oral surgeon who sent a biopsy sample to University of Chicago. I waited three long and excruciating weeks for the biopsy to come back inconclusive. More frustration.
One day I was having lunch with my brother and ordered a salad. Soon I felt a horrible burning sensation, one I likened to drinking a Molotov cocktail. I realized it was a red onion.
That onion eventually lead me to my answer. . .
I searched online for ‘mouth sores’ and ‘onion.’ The words ‘Pemphigus Vulgaris’ popped up, front and center. As I read more about this disease, I discovered five documented symptoms and I suffered from all of them. I learned a number of foods, including onions, aggravate the disease and its symptoms. Though PV can occur in individuals of all ethnicities, I discovered people of Mediterranean ancestry, Ashkenazi Jews and people from Columbia and Brazil are more likely to have it.
The most damning information I came upon demonstrated what was believed to be the severity of this condition in a 2007 publication.
“Unfortunately, if you have been diagnosed with the autoimmune blistering disorder known as Pemphigus Vulgaris, it is very likely that your life expectancy will be significantly reduced, often to just within a few years of the onset of symptoms. Most early deaths associated with autoimmune blistering disease are the result of secondary infections, such as that of the genitourinary system.”
That was one of the first published articles I read about the disease and I was horrified. Though I could not give in to the idea it would kill me in a few years, I did believe I was in for a miserable life ahead.
Despite the doom and gloom, I finally had an answer after three months of living in the dark. Finally. Now I had to do something about it.
My primary doctor suggested I see an ear, nose and throat specialist. I reached out to a dear friend who is a Harvard educated physician, Dr. Scott Smith, who was practicing dermatology at Northwestern. He said he had attended a seminar years ago about this disease, and agreed to help me. I learned about a blood test for Desmoglein, which are proteins that join human cells together. People who test at levels of 0—9 don’t have PV, or express any symptoms; levels of 9—20 are classified as ‘undetermined’; levels of 20+ indicate a person has the disease. When I was tested, my level was at 75.
The very next day I couldn’t even talk; I was certain this disease had already begun to take a terrifying toll on me.
Dr. Joquin Brieva, a specialist in Chicago, explained how different parts of the mouth, throat and eyes could be attacked. Basically, it is the good cells attacking other good cells in the body’s mucous membranes. The glue that held my skin together was actually being attacked by my own body.
What I also learned some people respond positively to Rituxan® (rituximab), a type of chemotherapy. The good cells doing harm to the body are tagged by this treatment and stopped from doing more damage. Monoclonal antibodies (clones of original cells) help to strengthen the immune system.
I told people the most dangerous thing I did every day was to brush my teeth; it took one slip of the toothbrush from the front to back and I ripped the lining of my cheek like stripping wet drywall of the wall with a putty knife.
When I began Rituxan® in January 2013, my Desmoglein levels had jumped from 75 to 128. Every day after I finished my treatment I would go shopping. There really is something to be said for retail therapy to get your mind off of things. I would push myself to go to the gym for at least ten minutes and ended up working out longer. It made me feel more positive. I never missed a day of work. I would listen to motivational tapes on my drive. I got dressed up and wore a suit and tie every day. I even got dressed up for my treatments.
Besides the exhaustion, and severe depression at times, I became very moody because of the steroids. I got infections in my nails, sties in my eyes, and rashes. It was just awful.
I couldn’t get a good night’s sleep and was in constant pain. Then I met Dr. Judy Paice. She walked into my life at just the right time, and was so compassionate and caring. I was concerned about being addicted to pain medication after reading blogs about the disease. Dr. Paice worked with me to form a strategy to reduce the pain to help me not become addicted to pain medication.
During my chemotherapy treatments my levels of the disease fluctuated. I first dropped from 128 to 98, then from 78 to 58, but then spiked during my third month of treatment to over 100. I became discouraged, but I knew I had to stay positive. Within the year, my levels went down to 12 before my last results were classified as undeterminable.
I learned through my initial research that many people dealing with rare diseases which are a mystery to the medical community. It normally takes about a year and 12 doctors to determine what ails them.
It took me three months, ten doctors, and ultimately my diagnosing myself. It also took tremendous faith, determination, hope and belief that I would find my answer. I didn’t give up on finding a way to heal myself once I learned what I was facing.
Along the way, I wasn’t able to connect with anyone who was going through what I was. I know that could have been healing on its own. My hope is that my story can be an inspiration for others, and I am open to anyone who is going through a similar circumstance to reach out to me.
The larger message I’d like for others to take away is that you must be a true and unwavering advocate for your own health. I told myself at the start of this life—changing journey that I was going to overcome this. And I did, with a steadfast determination and the support and knowledge from a fantastic team of doctors who I was fortunate enough to encounter.
Today, I know there is no playbook for this disease and that it can reappear at any time. I also know I will stay positive and continue my treatment. As Dr. Mehta, my chemo doctor says, “we kill big cancer and we will kill this.” This, and my entire medical team at Northwestern were simply amazing and key in helping me to remain positive.
I never cried while going through this trial of not knowing. I learned what I was up against and did what was necessary to bring about my own healing. However, now when I tell my story to others it is extremely emotional. I hope I can be a beacon of hope for others who might otherwise not know where to turn.