My Lyme Story

July 23, 2018

Five years ago I moved away from my family in Long Island, NY and followed a man to California who I thought I was going to marry. While I was out there I started to get sick almost immediately. At first he was supportive but as time went on and I didn’t get better he could not take the spotlight being off of him and decided to break up with me. Leaving me completely alone in California with no friends or family to count on. Being completely alone with a chronic illness across the country from anyone who can help is one of the scariest things in the world.


I began to experience a myriad of “unexplainable” symptoms that doctors believed were seemingly unconnected and (all in my head). I started having seizures so bad that I would often hit my head and lose the ability to speak or walk afterwards. I would wake up from these blackout seizures to my dog Bodhi licking my face wondering what had just happened.

 

The first time this happened I went straight to the ER. Having just had a seizure, I was completely unable to speak at all or advocate for myself but I was clearly very ill. The doctor decided there was nothing wrong with me, diagnosed me with “confusion,” referred me to a psychiatrist and sent me home. Shortly after this happened I was in the shower and suddenly everything went dark. I was terrified I was having another episode but much worse this time. I managed to safely make it out of the shower and crawl to my bed where I realized the vision in my left eye was COMPLETELY gone. I sought out a doctor for this as well and he told me that it sounded very similar to something called, “Optic Neuritis,” which is a common occurrence with patients who have MS and that my vision would come back in a few days.

 

Needless to say it did not. Nor did I have MS. To this day I am still blind on my left side. Next to come was the extreme pain, fatigue, muscle/facial spasms, and Bells Palsy. I sought out countless doctors many of whom told me it was all in my head or I was too young/pretty to need to be sick for attention. I was accused of drug seeking or being psychotic. One doctor even diagnosed me with conversion disorder, which is a nice way of saying it was all in my head and I was crazy. I was dismissed by most everyone in my life. My friends back home never called me anymore and I found it extremely difficult to make new friends out in California. My mother passed when I was 2 and my Father is a classic alcoholic narcissist who refused to help me move back home for treatment.

 

My father also completely stopped answering his phone or emails when I called and said to me, "Call me when you get a REAL diagnosis. The doctors say there is nothing wrong with you." My Father’s girlfriend and my siblings all thought I was crazy and stopped talking to me for YEARS. Seeing as I was across the country I could not defend myself or show them in person how physically ill I truly was. That’s when I realized I was completely alone in this battle. I spent numerous days and nights in the hospital with neurological complications. The doctors that had no choice but to take me seriously misdiagnosed me with more diseases than I can count. Every doctor’s appointment I would go in so hopeful that this would be the day they’d have the answer, and I’d almost always leave in tears. There have been so many times that I have considered completely giving up on life and am grateful I didn’t.

 

One year and 20 days ago I was FINALLY diagnosed with Neurological Lyme via a CDC positive Western Blot test. However, that was just the beginning of the battle (considering most doctors don’t believe Lyme exists). After my diagnosis and several visits later, my sister (a nurse) realized that I was not faking all my symptoms and that I NEEDED to move home to be close to family. She went to battle for me to get my Dad or anyone to try and get me home. About a year ago we succeeded and by the grace of God I now live around the block from my sister. With her help it has taken me over a year to get the appropriate treatment for my disease but today I FINALLY got my PICC line in and will be getting IV antibiotics on a daily basis.

 

I am SO grateful to finally be on the road to recovery and I can truly say that this disease has brought me to my knees with gratitude for God’s gift of life. For anyone out there struggling with an ‘invisible illness,’ fight with every ounce of your being. There is a light at the end of the tunnel. I am forever grateful to those who stuck by me during this trying time in my life. Especially my sister I would have taken my own life had it not been for her. So anyone out there reading this PLEASE I beg you keep going one day one step one inch at a time you WILL survive this. If I made it this far I know you can too. May you have an abundance of blessings.

 

 

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