“In 2014, I was 25 years old living in Westchester County, NY, which is 35 minutes outside of Manhattan. I am a native New Yorker. I was working in Greenwich, CT when I noticed strange things happening to my body. I am now 34 years old living in Los Angeles and operate 2 businesses birthed out of the mess of my illness.
When I was living and working on the east coast, I started feeling unwell. I have always lived a stressful life, so thought it might be the wear and tear of my body and me turning 25 years old, until the joint pain led to vision issues. I woke up one cold morning in New York not being able to see properly. My eyesight was blurry and it would come and go. On top of it being blurry I would experience this bizarre vision interruption (the best way to explain it would be when a television is all fuzzy trying to get to the appropriate channel). This is the exact description I told my doctor.
The morning I experienced this, I did not go to work that day. I was always into my health and eating nourishing food for my body but the symptoms that were happening to me were far out of my comprehension. I decided to go to a regular eye doctor, not knowing what I didn’t know. I went to a random eye doctor to check my vision and tell her what I had been experiencing. She looked at me quite concerned and asked if I had traveled or was experiencing head pain. I told her no. She then directed me to a local opthamologist. Her facial expression was quite alarming. She immediately contacted another doctor and had me sent there. I went to another opthamologist that same day, at this point I had contacted my parents and told them what was going on. Keep in mind, this is a random Tuesday afternoon and I haven’t had a clue what was happening or going on. The other doctor ran the same test as the previous doctor and kept asking if I had any head pain, pressure, or if I had traveled out of the country. They told me my optic nerve (which is the main nerve that is in control of your vision) was majorly inflamed and compromised. They called my primary doctor and ordered an emergency MRI. I didn’t know this till later but their main concern was a BRAIN TUMOR, everything they were picking up on the scans was mimicking symptoms someone would experience if they had a brain tumor, so they wanted to rule that out. The eyes are connected to our brains, people don’t give enough credit to eye doctors but from my experience I realize how important it is to check your eyes regularly.
Once they ordered the MRI, I drove to the hospital with my parents, at this point I am freaking out inside and so confused. I was trying to hold it together for my parents sake. As I got to the hospital, they set me up for the MRI. I remember just praying the entire hour I was in there, it felt like eternity. I almost felt like I drifted off into another dimension at this point. I couldn’t even process what was going on. It was a Tuesday afternoon, I thought my eyes were blurry because I needed glasses, how did I get here and now they are looking for a brain tumor?
I remember getting out of the MRI and waiting for the results and the doctor to come in and tell us what was going on. I remember her coming into the room and saying, ‘Give me a second,’ then coming back into the room to chat with us. I had thought to myself when she told us to give her a second, that it must have been good news, there must have been no brain tumor. If it was urgent, she wouldn’t have said give her a few minutes. She kindly said, ‘Thank you for giving me awesome news tonight, there is no brain tumor; however, we need to figure out what’s going on with your eyes. You can go home tonight, but tomorrow we would like for you to see a neuro-opthamologist.’
I remember that evening, I went home and I could hardly sleep. I ended up Google searching ‘Worlds best neuro-opthamologist.’ I didn’t know how unique these doctors were and there are only a few that study both the eyes and brain. Lucky for me a world renowned doctor was only 35 minutes away in Manhattan. His name is Dr. Jeffery Odell. Till this day I owe Dr. Jeffery my life. He didn’t even take my health insurance and worked out a deal with me because he genuinely cared about me and my health. When I got to his office at New York Presbyterian in NYC, he ran tests for days. They tested my Lyme Disease twice. All times, NEGATIVE. Even though Dr. Jeffery Odell couldn’t confirm if I had Lyme disease because of the way traditional hospitals test (major eye roll here), he saved my vision and my life. For that I am forever grateful.
Since I am a very intuitive person and I started putting the puzzle pieces together, a deeper knowing if you will, that I didn’t just get my diagnosis of Intracranial Hypertension for no reason. I knew there was a root cause to this. Dr. Jeffery put me on medication to minimize the swelling of the optic nerve, that was just treating the SYMPTOMS of what was happening to me. I was on the medicine for eight long years. Within those eight years, I was slowly researching and putting the puzzle pieces together. I realized that in most cases where something is labeled ‘IDIOPATHIC’ that’s just a fancy way of saying they have no idea what is going on with someone. For me, I knew there was a root cause. Within those 8 years, other weird stuff started happening to me, I started getting more joint pain, sjogrens of the mouth, neuropathy, PCOS, cysts in my breast and ovaries, mental health issues, anxiety/depression, weird skin lesions and marks. What I was starting to find out is that I might have the unexplained… LYME DISEASE. What I found out on my own is that when someone has these unexplained things happening to them and they don’t know why… it’s usually Lyme. Why don’t they find out? It’s because there is not the right testing out there. I finally found a Lyme Literate doctor here in Los Angeles. I moved a year after my misdiagnosis and realized life is short and you better make it the best life you could possibly make it. When I found my Lyme Literate doctor, she ran a test and confirmed I had Lyme Disease, Bartonella, Babesia, Mold Toxicity, Hashimotos, Srojens, hormonal issues and the list goes on. I almost lost my vision and succumbed to a diagnosis that wasn’t the actual diagnosis, this is why I am so passionate about going with your gut/inner knowing, managing your stress levels, and most of all relying on prayer and your faith to pull you through. I am now healing from Lyme Disease and Co-infections and Mold. I have now created 2 businesses out of my journey @chronicallyhacked and @kitchen.remedy. There is more to my story, I encourage everyone to go check it out. The mess became my muse and even though I walked through the mud, I prevailed and turned my mess into a message. Never give up. Always keep trying. If something doesn’t feel right – you’re probably right. Never take NO for an answer.”
Dianna