"MY STORY.. Behind the Smile!"
Many people have facades. Facades can be a means of preservation - a kind of armor that no one can penetrate or a shield that keeps others from knowing too much about you. With this armor on, you can pick and choose what or whom the outside world perceives of you. It can also be lethal.
I have advanced neurological Lyme disease. It affects every aspect of my life. And until now, I was living a façade.
I dedicated the past 9 years to acting. Acting like this strange, bizarre new world of living with chronic Lyme Disease was standard. Acting like I'd expected this my whole life, acting like I wasn't bothered in the slightest that overnight my life as I'd known it, stopped. But still I never went anywhere or did anything without a smile:until 4 years ago.
At 32, I was diagnosed with Lupus and Rheumatoid Arthritis. It started out with achiness; then I couldn't move my arms. It felt like they were sprained. After visits to two different Rheumotologists, I was told I had Lupus. I never heard of Lupus before. After I read about it and that the disease had a 10 year life expectancy after diagnosis, I decided it wasn't going to get me. I started working out and taking better care of myself, went on the low dose steroids that were suggested and continued with my life, working and raising two wonderful boys. It was a struggle but manageable.
In 1994, after transferring from Ft. Knox, KY to Orlando, FL, I started having numbness in my foot and lost use of my foot. After numerous visits to Neurologists, I was diagnosed with Multiple Sclerosis. As devastating as the diagnosis was, I thought, OK, I don't have Lupus, I only have Multiple Sclerosis. Unfortunately, that wasn't the case. The doctor said I had Lupus, Rheumatoid Arthritis, and Multiple Sclerosis.
From 1994 to 2004, I continued to see Rheumotologist and dealt with the joint pain and major aching, hurting, stiffness, fatigue and other symptoms the doctor thought were Lupus and Rheumatoid Arthritis although I never, ever had the classic butterfly rash. . I was also seeing the Neurologist for the MS symptoms of numbness in my legs and dizziness. During that time, the Rheumotologist kept waffling about the diagnosis saying she didn't really think I had Lupus, that it could be Fybromyalgia (the catch all disease when a doctor really can't figure it out). I had other mysterious things happening to my body that would pop up out of nowhere. I saw specialist after specialist throughout the years.
In 2004, I could no longer hide that I had major diseases.. I was put on multiple drugs but none seemed to work. Then my legs started not to work. I pushed myself to walk and the fatigue was getting worse. It was at that point I knew I had to find something other than traditional help because I was getting worse and my fear of ending up in a wheelchair was terrifying. I searched and researched the Orlando area to find a doctor who was an MD/ND and found a wonderful doctor. I could barely walk into his office at my first appt and just from the symptoms he was given, he told me that all of my problems stemmed from Lyme Disease. What? No way. I couldn't even imagine having something like that. I had the Igenex Lyme test done and it came back positive with many bands. Doctor said I had chronic Lyme Disease which caused the Multiple Sclerosis, the Fybromyalgia, and now the Chronic Fatigue. It was Lyme at the beginning (1986), not Lupus! I had advanced neurological Lyme disease.
2004 is when my real battle with Lyme started, the day I was diagnosed. My life has become a war against this disease that I was determined to win. My only objective was to get better and stay ahead of the pain. The pain would not define me And the misery of this disease would not become my life. I began a flurry of treatments/protocols, antibiotic IVs, naturopathics, homeopathics, herbs, crystals, cold packs, acupuncture, lymph massages, chiropractic treatments::protocol after protocol:..anything to extend my life long enough to officially retire from my job. I just knew if I could get to retirement then I would have all the time in the world to really tackle this disease and get better.
Well, little did I know that I would just continue to get worse. I am now at a desperate stage of my life:..to get my quality of life back. The last three years have been the worst. I have struggled. This disease is ruthless. It has burrowed into every cell of my body and I am waging a war against it.
I've grown ashamed and embarrassed of my illness, I've lost the sense of community, I've become painfully isolated. I bought into the unhealthy belief that many of us do: that we should be able to control everything. That we must keep up with our increasingly fast-paced culture, no matter the expense to our bodies. My illness has taught me differently.
And the expense to treat this disease has been staggering. Unfortunately for most people, even the best insurance covers very little of the cost of Lyme-related doctor visits and treatment. My out-of-pocket medical expenses are insurmountable. I am now part of a club of people with a stigmatized disease that many doctors refuse to touch. While I am lucky enough to have had a doctor who was willing to provide open-ended treatment, many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives. I am blessed beyond measure for so many reasons, one of which is to have gotten this far and still have a loving husband and family.
The current doctors have expended every modality they have available for treatment and I have done it all but my quality of life is gone. Currently, my days consist of driving to treatments that only sustain me and allow me to get to the next week.
I have been able to drum up the strength and will to keep searching for an effective treatment, which led me to the Sponaugle Wellness Institute in Tampa. The Institute treats Lyme Disease, Multiple Sclerosis, Chronic Fatigue and many other diseases. Finally, a light of hope! I am scheduled to start treatment on May 6, 2013.
I have always been a private person, never wanting to burden anyone, always feeling that I can handle anything that God gives me. But I can no longer hide this or handle this without help. I know that now I have to tell the truth about my diseases and ask for support. I have to reach out. I know more deeply than ever that friends are everything. I need support from every corner of the universe to make it through this.
I have been told that it could take 1-3 months to complete treatment and it will take thousands of dollars to complete. I am asking for donations, prayers and support so that I will come out of this with a renewed vitality and quality of life. This is my last resort.
Thank you for learning about my life behind the smile, and for anything you can do to support my journey back
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