My name is Tamara Owens. I showed up in this life back in April of 1967. My life was pretty normal when I was younger. I had things to overcome, like anyone else. I have always been artistic and that has helped me appreciate the beauty in the world. I consider myself an optimist. I always try to focus on the good parts, even when it seems to take a sunbeam and a microscope to track them down. I am the “funny one”. The friend and family member who makes light and laughter of any situation. I think all of this has kept me from staying too long on the dark side of my Lyme disease adventure. It is always there for me, but I try hard to avoid it. When it draws me in I sink quickly and it takes days to come back out. I know my life will never be as it was before “it” happened. I miss me. This is my story.
I lived a pretty modest life as a child. My parents would be classified as “lower middle class”. I was adopted by my maternal grandmother and her husband. My birth mom was always around, but in a technical legal “sister” capacity. Every summer my mother would take me and go to the place she grew up. It was a tiny town called DeWitt , Arkansas . This was always the highlight of the year. I loved going to my grandma’s and I had a favorite cousin there to play with. We did this every summer, to the best of my memory. Only two summers stand out in memory above the others. The first being 1978. This was the summer I had a tick stuck to the top of my head. I’m not sure what my mother did to wrangle it out of my skull, but it left quite a scar. On top of my head since then I have had a bump. I have accepted this bump as part of my personal landscape and never given it much thought, unless it itches.
The second summer of memory was 1980. This was the summer I lost my favorite cousin, Joey. On July 5 he was accidentally shot to death by his best friend cleaning an “empty” gun. My family was raised with firearms. My father had over 100. I support gun ownership, but education is the key. The other childs’ parents had not been so diligent. My cousin was two years older than me and my hero. He even taught me how to drive. It was the first real tragic and painful loss of my young life.
Flash forward. I give only these two examples from my childhood because of their possible relevance in haunting my adulthood. Was that the tick that got me? Did I carry Lyme disease all that time? I doubt it, but it was worth considering. I did happen to go to the woods outside of Chicago , Illinois and St. Charles , Missouri in June of 2003, so the tick that got me when I was 11 years old seemed to be coincidence. July 5, 1980, lost my cousin. July 5, 2003, lost my life. That is where my Lyme story begins.
Travel with me. I am not alone. There are thousands of us. I cry to read their stories and long to help. Then I remember no one has been able to help me so how can I help them? All we have is each other. All we can do is listen. Perhaps one day the medical world will figure us out and give us back our lives. Until then we are considered too few to bother with. I began my Lyme adventure in Topeka , Kansas , and I believe nine people were infected in 2003 in Kansas . I often wonder if moving to New England would benefit my medical process, but that seems a dream of Oz.
I woke up July 5 about 5:30 a.m. Much to my surprise, I could not move my neck. It was not a stiff neck. It was not sore. It was locked up completely. It took me thirty minutes to curl up, roll over and do a push-up in order to get out of bed. I drove immediately to the Emergency room. The doctor decided that I had torticolitis, the first misdiagnosis in a line of many. I was given muscle relaxers and sent on my way. A few days later I went to my family practitioner for further assistance. My neck did loosen up after about 3 days, but then things got worse. I explained to her what I was going through and told her my left knee was swollen and tingling. I have had problems with my right knee since I was a teen, but never my left. She did not seem to know exactly what was happening, but did act suspicious. She forwarded me to a rheumatologist. I really got the impression from him that I was too mobile and too young to waste his time. So after a brief range of motion exam, he sent me on my way.
By the end of July I began to feel assaulted by an invisible enemy. Within two weeks of the locking neck episode, I was faced with a numb and swollen right hand ring-finger, a left thumb that felt as though I hit it with a hammer, all of my muscles seemed to move into rigor mortis and my brain was on half capacity. A week after all this came on to me I had to huff and puff and scream to work up enough adrenaline to get out of bed. It was simply too painful. I was still a pretty fast learner though and after 3 days of that I just started sleeping on the couch. Meanwhile, my diligent general practitioner had me lined up with a neurologist for the “acupuncture test” or EMG (electromyography). When things got really tight she sent my back to the rheumatologist. She sent me for an MRI.
While everyone else was busy running this test and that test, I was busy on the internet… EVERY day. I was scared. I “Googled” for hours to match my symptoms to anything, a simple logical process that has since become a way of life. My rheumatologist seemed offended that I gave him a list of possible offenders. He sent me for a spinal tap. My mobility had quickly started to fade. My knees would not bend normally, my right arm was only comfortable in a sling position by my side and no matter how hard I tried to use mind over matter, my body quickly told my mind that it did not matter. I scooted along everywhere I went. I gained tons of respect for the mobility-challenged. I stayed upright, but it was a painful fight to do so.
I was now existing on Skelaxin and Neurontin. My primary doctor said the Neurontin was a seizure drug, but seemed to help nerve stem pain such as mine. These two drugs were the only relief I had, well, except for marijuana. That was the only drug that allowed me to stretch my muscles and relax. I discussed this with the doctors and they could not promote it, but advised caution and moderation. I allowed myself to smoke it only once per day in the evening. I never smoked it during high school, so it was a new experience to me. I would enjoy the hour-long island of relief and then slowly melt back into their world of synthetic “normalcy”.
I had to sign up for FMLA [family medical leave act – U.S. Dept. of Labor] at work. My job was in a call center and not physically demanding, but very mentally challenging. The attendance policy was very strict and I was about to lose my job. Between the appointments, fatigue, pain and medication, I was a shell of myself. The cut-back in hours was a cut-back in income. I had to move in with an ex-boyfriend to save money. My mini-van had locked up and died so he was also my transportation. My independence was checking out at the door with my health and mobility.
My van died two days after my spinal tap. The spinal tap that is to be followed by slow motion and low exertion for three to five days. I had to walk three miles to our townhouse. By the time I got there I thought my head would explode. I called in to work because that is where I was headed when the van died. Two days later they fired me because I was on a final warning and I did not go to work due to transportation, a technicality on their part. I advised them that I was on FMLA, they could not fire me and I did not go to work because of the exploding post-spinal tap headache. I could have secured transportation, they conceded and I hung on to my job by a small technicality. I knew it was a matter of time before they had me.
August passed by with a litany of tests and supposition. The tests that were being given were coming back “ok”. Nothing was wrong with me at that level. I told them to keep testing. I kept doing research. They kept telling me that I did not have whatever malady I threw their way in guesses. Finally, one day in early September, I asked the rheumatologist to test me for Lyme disease. I think he laughed quietly to himself as he pompously questioned why I would think that. That is “rare” in Kansas . I told him I was in the woods for many hours in June. He wanted me to produce my bulls-eye rash. I could not. I looked him in the eye and asked, “Do you know what IS wrong with me?” He could not answer affirmatively. So why not try anything and everything, no matter how geographically ridiculous. I guess I knew he concurred when he called me on a Saturday night while I was bowling. I had a special eight pound ball made with five holes drilled in it. I would slide up to the line and give it a push, but I loved to bowl. When you get a call from your doctor on a Saturday night, you feel special…and mortal. The good news was the bad news and it was Lyme disease.
He wanted to start a twenty-one day IV (Rocephin). So the IV began on Monday. The first few days I left the shunt in my arm, but soon grew tired of Saran wrapping my arm to shower. By the seventh day I just had them take the needle in and out. We went through diarrhea and improvement. I ate a lot of yogurt and the diarrhea became so bad after one week they took me off off the IV for two days. Then we started again. After three weeks, there was improvement. There was never full recovery to the pre-Lyme me, but I did gain more mobility. I was still in a lot of pain. My brain still did not function properly. I still lost my job, my home, my car, my sanity, my patience, my hope and my pride. I moved in with my birth mom.
A year later I went to truck driving school and have tried to do that ever since. That year off was a blur of pain, alcohol and depression. I have filed a disability claim and am currently in appeal. I am too young and can do other things, that is what they tell me. Well, I tell them, sure, then what if I have to take a nap? What if I am in too much pain to go to work? What if I urinate too often? What if I become ill at work? I cannot stand very long, cannot sit very long, get tired easily, become confused easily. I can no longer multi- task. I have zero patience in a customer service situation — obviously, I was fired.
Now I am living in and out of insurance, getting my medications most of the time, begging once more for a diagnosis. Once again having a list of suspects, but no one will commit to me, to it, to us. Lupus, MS, CRPS, sarcoidosis or any of many diseases “de jour”. Along with this I have old things such as scoliosis, advanced degenerative disc disease and general allergies. The worse part of it all is my sleep pattern has never recovered. I NEVER sleep more than two hours at a time. I wake up. Sometimes I stay awake and other times I go back in for another two hours. The sleep is never restorative.
A year and a half ago I began to have problems breathing and developed pink lumps on my legs. This has been tested for many options, but no definite decisions. COPD and erythema nodosum is all “they” will commit to. Chronic fatigue, insomnia, confusion, frustration and when I wake up I have visual halos. The less I sleep, the larger the halos. I carry a bevy of medications to cover any emergency. Advair, Combivent, Albuterol, Neurontin, Soma, Cymbalta, Excedrin and Claritin. I am currently pursuing non-synthetic options. I am doing research on herbs and supplements. I am seeking resolution and peace.
I know there are thousands of us. I know I am one of many. It offers some consolation, but it does not offer us help. It nearly destroys our hope. I often cannot even believe this is what my life has become. I have not given up completely, but I am doing everything I can to take care of myself. Ultimately we are our only defense. We may not get a fancy diagnosis, but we can experiment with things that bring relief in a stable way. I am not condoning or suggesting the use of any of my remedies because I am a work in progress. I am telling you my story. May we all find time to appreciate what we have and try not to give too much power to what we have lost.
-Tamara
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