Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Tiffany Goodrich’s Essay:
My head is pounding, my heart racing, I'm feeling faint, I can't breath. When I was 23 (now 29) I collapsed on the floor of my retail workplace in downtown Portland, Oregon. This was the last moment of my position as assistant manager of a large retailer store. In Spring of 2006 my health had been declining more every month it seemed. I started having worsened headaches, fatigue, anxiety, and then troubles with memory, joint aches, body ache, balance and sleep. By the time I had collapsed at work I was already complaining that I knew something was very wrong and I needed time off.
My employer more or less had refused my vacation time because of their shortage of management. After the incident I was granted medical leave and paid short-term disability. Within a month I was clinically diagnosed with Chronic Neurological Lyme Disease and presented with a positive blood test. My original outlook was hopeful, having finally been given an answer to my increasing list of symptoms and declining health. Over the next year I realized that having a name for my illness wouldn’t make any part of it easier or more hopeful.
Chronic Lyme Disease, sometimes labeled as a syndrome rather than a disease, is controversial because the medical community cannot agree on it’s cause, definition or even its very existence. The entire medical community agrees that Lyme disease in its acute form is of great concern as it spreads via Dear Ticks across North America. Infected ticks bite infected dear, then pass Lyme along with a host of potential other infections (each with their own complications) on to humans. The CDC (Centers For Disease Control) has recognized Lyme Disease to be the fastest spreading vector-borne illness currently facing the United States. Symptoms cover an entire two-column page and include hallmark bulls-eye rash (not always present or obvious), joint pain, muscle pain, arthritis, moderate to severe headache, nervous system complications, fatigue, confusion, memory loss, mood instability and clinical depression and anxiety. I experienced all of these, except the rash, and became so debilitated I couldnt work, maintaine daily living tasks, even drive.
Things got complicated when the standard recognized treatment for Lyme Disease did not cure the disease. Lyme is a bacterial infection caused by a spiral-shaped invader known as Borrelia Burgdorferi. Doctors typically prescribe a course of two to four weeks of antibiotics to kill the infection. In my case It was going to be several courses every 3 months for the next 2 to 5 years, perhaps life. When the infection is caught early, research shows antibiotic treatment to be very effective. However, I had been infected for 8 years without knowing. The standard antibiotic treatment may has a short term effect, only to be left with most or all the same symptoms again. Officials claim additional antibiotics are an unnecessary risk. At this point, many mainstream doctors and the CDC can only shrug their shoulders and often blame a patient’s symptoms on psychological issues or a sensitivity to the aches and pains of every day life. At one point, for some time, I was taking about 50 pills a day between prescriptions and supplements around the clock. After a good year of this and my health worsening, doctors determined it was largly in my brain tissue and I was given a pick-line for daily IV antibiotic treatment. The IV straight to the heart is to get past the brain barrier to better deliver the antibiotics to the brain tissue. Because the Infectious Disease Society of America(IDSA) and thus the referring body of the CDC have not agreed on how to define or treat these long term conditions, Chronic Lyme patients are left to suffer without health insurance coverage of their ailments after 28 days. Meaning I had to mix and administer meds myself, clean, and take care of the line as well, when only a very well trained nurse should be handling its delicate sterile environment. After 28 days the IV antibiotics are no longer covered and become out of pocket expenses. The medical cost to continue pursuing treatment with Lyme-aware doctors is vastly expensive. Between my $400 monthly insurance premium, which covers nothing but prescription pills written by an MD only, specialists visits, prescriptions, out of pocket supplements and labs, there is not enough resources to afford rent and living expenses. There is not enough to afford this 'treatment'. These doctors will toss anything at you, hyperbaric chambers, infrared saunas, acupuncture, tinktures. Pretty much, you can try whatever you want but what is your life worth in $ because this will all be out of pocket. As for family support, supply was limited. My father had remained skeptical of the diagnosis and the medical costs over the years, ultimately dropping the health insurance and expense payments in my lap citing financial hardship. At this very same time, the student loans he said he had paid off hadn't been touched. He let everything go delinquit under my name and a personal "your worthless" statement to my face. We stopped speaking. My family had no financial support and very little emotional support, only from my mother but our relationship was a strained one. My mother pressed hard for treatment and doctors, and worked equally hard to help pay for it. Ultimately, with treatment options exhausted and with little positive effect on my health, my mother grew desperate and wrought with worry. By this point I was dead inside, tested on, been through more drugs than I should even be aware of in my 20's, disowned and left with no hope. My mother wanted me to try anything that claimed to treat Chronic Lyme or any of its ailments. So I tell her, "I’ll go to this doctor and try these things but I know it won’t be worth it. I want you to spend your limited money (parents also divorcing through all this) on yourself," but she insisted. Just as I had predicted, more ‘treatment’ did nothing, and the only thing I gained were stronger addictions to Methedone, Xanex and Wellbutrin.
After years of being denied insurance coverage, aid, testing countless combinations of medicines and supplements, I began to lose hope. When little progress materialized, I lost more. Once the clinical depression and anxiety set in, suicidal thoughts emerged and were sometimes acted upon. When you’re young and can appear healthy and attractive, people have a hard time really believing that you are seriously ill and in need of medical attention. At the height of my depression, I turned to shock value. I'd draw blood from my pick-line IV and paint it on my face. "Do you see it now?" I'd ask. I wanted to show people my illness on the outside so they would be shocked into believing how sick I felt. All of the "you look fine to me" statements were really starting to get to old. I needed comforting hands, open ears and money if I was going to make real progress, and none of it was available to me. I've had 6 or 7 therapists say to me my case is "too much" for them to work out. No psychological support. Now 5 years later, I am not much better, in severe debt, credit wiped, broken strained family, and very few people to count on for help.
I've decided all the money in the world can’t cure my case. The medical community can’t even agree on how much Lyme plays a part in each patient’s symptoms, and sometimes if it even exists at all. In attempt to make progress, I moved away from it all. I asked my mother to stop with the medical pursuit and help me with rent so I could move back to southern california and try to rebirth my life. I've been here since April, trying to create the illusion of a normal life for myself and do things I enjoy. As much as I want to be self sufficient and forget I have this, I can't, since I still suffer from my daily major symptoms, severe chronic headache, fatigue, anxiety, depression, insomnia, and nightmares. I never feel rested. In moments of doing things I enjoy my symptoms allieviate some, but maintaining a perfect brain chemistry everyday has not been achieveable. Hollywood is much harder than expected. It always comes down to financial expenses standing in the way and a broken promise. One of my major barriers is also needing to know how to more effecently use social media, facebook, youtube, twitter etc to market myself if I want into the entertainment industry. With my disease, I have a hard time teaching myself things, but if I'm shown hands on, I can execute them very well. I came across this community & contest today. Its exactly what I need. I want to model/spokesmodel, dance, promote, and design. I also want to spread Lyme awareness and help others, while looking into better treatment for myself and useing my expereience to help find a cure.