Chronic Lyme Disease effects so many who can't see or understand what this disease entails. Battling war
you must fight in order to heal and love life again. I have been told at least forty times in the past year that "you must be your own advocate". This statement I will forever hold dear as I pursue and concur this debilitating disease.
My struggle with Lyme Disease started long before the horrific symptoms of Chronic Neurological Lyme Disease had even set in. I found day to day symptoms normal and was clueless for over twenty years as to what was happening to my body. Sickness was a daily occurrence that I hadn't found unusual as I had been unhappy for as long as I can remember. Day's that I just felt "okay" were few and far between. These occurrences I thought were a normal part of getting older and growing up.
I'm going to begin with the day that triggered a landslide of events and onset of discoveries leading me to where I am today.
I'm a now 28 year old woman living and loving life in the lovely town of Vail, Colorado. I work extremely hard and some may even go as far as calling me a workaholic. I am a divorced single mother of a beautiful six year old daughter who is more than a handful most days. I work forty plus hours a day at a busy hotel in the line of fire and have a makeup artistry business that I share with my Mother.
In October of 2010 my Mother and I were working on a magazine shoot for two separate magazines promoting a new amazing wedding dress designer. The day prior to the shoot the models fell through the cracks with no one available to replace them. I offered to play model for the day and be a part of this fantastic photo shoot. As I was wearing very little clothing in the freezing Vail morning air I felt extremely off. My leg was sensitive to the touch and I hardly had the strength to stand. Not wanting to ruin the shoot for not only the dress designer but for the magazine publisher who just lost her husband to a heart attack I pretended that nothing was wrong. As the day progressed I noticed blisters on my lower right leg that resembled bug bites. I came to the conclusion that maybe a spider had bitten me or that I had a rash from wading in the ice cold water to get a good photo. I went home and ignored the burning sensation on my skin for almost a week.
When the pain in my lower right leg became nearly unbearable I decided to do my own research online. My blisters looked nothing like bug bites and a lot like shingles. I thought to myself "27 year old woman don't get shingles." My diagnosis was confirmed by my family physician who was also baffled that shingles would occur in such a young woman. I was put on steroids and medication immediately to decrease the painful symptoms. Prior to departing the doctor's office I was told that shingles could last up to six weeks and then would dissipate and heal.
Two weeks prior to my shingles visit I had become too weak to walk and felt as if my heart was going to stop nightly. I started having seizures and tremor that scared me and were dibilitating. I informed my father that I felt as if I was having a heart attack. My left shoulder was throbbing with pressure with my entire arm amost as tight. I had difficulting breathing with a feeling as though someone were sitting on my chest. My vision was blurred and speech suddenly slurred. I had a never ending mirgrain headache causing nausea and vomiting.
After experiencing life threatening symptoms I had asked my Dad take me to the Vail walk in center to make sure I wasn't actually having a heart attack. My doctor informed me that I had something called Transverse Myelitis which only one in eight million people develop. This was a grim diagnosis in which most patients become wheel chair bound or brain dead. Transverse Myelitis effects the nervous system and is extremely debilitating to whom it effects with no known cure. With my nervous system attacking itself and the internal sense of doom I had no strength to get out of bed to brush my teeth let alone shower. I became so ill that I couldn't work or even try to think about it for over a month and a half. My doctor at the time compared my recovery to that of a stroke patient and healing would be just as rigorous. I had filled out my disability forms with the thought in my mind that I may never be able to work again, snowboard, hike, or chase after my daughter.
By November I had lost fifty pounds in only two months from complete lack of appetite and nausea. My migraines became so severe I would vomit and have to wear sunglasses around any light. I had little support at work and felt used by most everyone around me. I became a complete emotional wreck with no clue as to what was wrong with me or if I would get better. I began try cry every five minutes without cause and would scare those around me whom by this behavior more than likely thought I had lost my mind. My doctor ordered a spinal tap to ensure I didn't have MS or any other neurological disease to cause my rare diagnosis of Transverse Myelitis. My CT Scan showed nothing out of the ordinary besides some white spots in my brain. I was assured that white spots indicate migraine activity and that I would be just fine. My spinal tap results revealed a positive marker for Lyme Disease. The doctor insisted that Lyme Disease does not exist in the state of Colorado and that my results must be a false positive. I didn't think much of my test results until much later on.
Lana, my best from who lives south of Denver viewed an episode of Mystery Diagnosis on the Discovery Heath Channel featuring a young woman living in Boulder with Lyme Disease. Lana saw that she had every symptom that I was experiencing making the story hit close to home. I had shrugged off her comment about Lyme Disease for quite a few months honestly not believing that this was what I had been suffering with.
During one of my weekend trips to Denver my left eye began to feel strange and lost almost all vision. My tears ran and my eyes were beet red and in severe pain. I let this continue as I am terrified of the emergency room and the mention of paying another medical bill for an appointment which got me nowhere. At about four in the morning I decided that enough was enough and that I couldn't stand the pain much longer. I attempted to wake up Lana and her husband Alex with no response and decided to suck in up and drive myself. I'm certain that driving under these conditions were worse than driving extremely intoxicated. Once arriving to the Emergency Room at Swedish Hospital I waited patiently to be seen by a neurologist as I was certain my eye infection was due to having Transverse Myelitis. Remembering what Lana had said about Lyme Disease I decided to ask the nurses if it were possible for me to have it and now my eye was suffering. This decision led to me waiting for eleven hours in the emergency room still in street clothes and wanting to remove my own eyeball. Once the neurologist arrived he took one quick glimpse at my eye he had stated that I only had a scratch and seeing him was completely unnecessary. I was sent home without an eye patch to drive or any relief. After the emergency room fiasco the pain was getting worse and I decided to see another doctor. Immediatly I was given an appointment for diagnosis. The ophthalmologist caring for me was the first to put in writing that I was suffering from Lyme Disease and it had affected my cornea. My eye had a large visable white spot right in the center. Doctors compared my scaring to Saturn as there was a perfect ring around the indentation. It turns out that I had developed a corneal ulcer which if left untreated would have taken my left eye. It took eight weeks for my corneal ulcer to heal and to finally put my glasses away.
