You never know what someone else is going through. You look at a person and in an instant form an opinion based solely on appearance. People always tell me that by looking at me they would never know what I am going through. The constant pain, the fatigue, memory loss, neuropathy, etc. I am writing this to tell my story. I want other people who may be in a similar situation to know they are not alone.
Years ago I had to undergo a root canal for an infected tooth which surprisingly caused me no pain at the time. After that was when a lot of my symptoms started. I was getting constant headaches and neck pain and muscle spasms. The headaches were so bad no medications would help me, and the pressure was unbearable. Over the years those symptoms persisted, along with memory loss, joint pain, extreme fatigue, neuropathy, redness in my legs and my hands, flushing of my skin, etc. These symptoms led me to seek out rheumatologists, neurologists, endocrinologists, infectious disease doctors, chiropractors, etc. None of which could give me any answers as to why this was happening to my body.
One doctor told me I was a “medical mystery” and pushed me off to another doctor in her practice. Unless you have been through this you can not imagine the frustration of going to doctor after doctor and hearing the same thing. I knew my body better then any of these doctors. I knew something was wrong. I was terrified that I would continue to get worse and never get any answers.
Finally after a few years, I was referred to an acupuncturist who was known for diagnosing rare conditions. For the first time in years I had an answer. I was diagnosed with chronic Lyme disease. The acupuncturist ran all of these alternative tests on me and after everything was done, he told me that I was most likely bit by a tick when I was younger. Since I never knew and never got antibiotics, the infection stayed in my body. When he told me that, I sat there holding my boyfriend’s hand with tears running down my face. I was so relieved to finally have a diagnosis. None of the doctors I saw ever tested for Lyme disease or even mentioned Lyme disease to me.
Because my body was fighting a chronic illness, my immune system was very weak. The root canaled tooth from years ago eventually had to be removed. The infection had spread from the tooth into my jaw and infected my maxillary sinus. When my tooth was extracted there was a three millimeter defect from where my tooth was going into my sinus cavity. The oral surgeon said it was like turning on a faucet, my entire sinus cleared through the hole from the extracted tooth. I felt better then I had in years. This chronic infection that was in my face for years was finally gone.
Unfortunately because of the chronic Lyme disease, my body was not able to fight off the infection even after the tooth was removed. I had to see specialists in New York City about proceeding with sinus surgery. After two sinus surgeries and no relief from my symptoms, I had to get IV antibiotics for six weeks. It felt like my body was failing me. No matter what I did I could not get better. Homeopathics, herbal supplements, vitamin IVs, antibiotics, a PICC line, acupuncture, chiropractic, salt therapy, parasite cleanses — I felt defeated. As a hair stylist I am expected to look a certain way and take care of myself. I am expected to be a source of style inspiration for my clients, but with a chronic illness the job I once loved became almost impossible. I went to work every day and tried to get through the day, but it was hard. It was hard to fake being happy and hide excruciating pain behind a smile. I did not want to seem like I was complaining. I was afraid of losing clients. I tried my best to hide what I was going through. When you are sick the world keeps on going around you. You still have to pay bills, and now you have more bills, but working is so much harder. Everything is so much harder.
My boyfriend has been through this journey with me and I am so grateful. My focus has not been on him or our relationship. Lyme disease has been our focus for over six years. He has gone to doctors with me, helped me with medications, seen me at my worst. Between stomach issues and mucus coming out of my nose from my sinus infection, to my red legs and my hair loss, he has stuck by my side when many other people would not have. I had to focus on me and my health, and that meant doing what was best for me for once and not everyone else. I had to listen to my body. If I felt tired I would lie down. I had to get regimented with my vitamins. I had to go for massages. Vitamin infusions. Iron infusions. I had to focus on the good and try to remove as much stress as possible from my life. It definitely was not easy.
Lyme is a fight. It is a daily fight to keep your head up and get through whatever this day is going to throw at you. Lyme is a million things bottled up into one incredibly misunderstood disease. Chronic lyme for me has been life changing. As a young girl, you grow up with insecurities about your weight or your self-image, wondering if you are thin enough or pretty enough. You deal with drama with other girls, because at that age people are too busy making fun of each other and aren’t empowering each other.
I wish I could go back and tell that young insecure version of myself to enjoy the healthy body I was in. The cheerleading competitions, the sleepovers, the playdates — to enjoy every part of life, because in a few years the things you are worrying about now will be a mere thought, and the body you have will be one of the things you miss most. I miss living in a healthy body. One that did not have to fight to get out of bed, or fight to find the energy to function every day, or fight to go through another round of treatments. Every single day is a fight in one way or another — but I fight on.
Getty image via kotoffei