and like Love Story, there is no happy ending.
For now.
I wrote this for to be submitted to Congress regarding health plans. I wanted to share it here as well.
In 1992, I graduated from college with highest honors in two majors. I got married, had two children and decided to be a stay at home mom. I thought I was living the American dream.
In 2004, all of that came crashing down. Hard. My husband became sick and no one knew what it was. Two years and many misdiagnoses later, we found out that it was Late Stage Neurological Lyme disease. It took us another year to find a doctor who could actually treat him.
At this point, he was extremely ill and barely able to work. Between 2004-2007, he missed more and more work. Reluctantly, he went on disability and then, long-term disability. After his long-term disability ran out, we appealed and re-appealed to have it extended. We were denied each time.
Lyme Disease treatment is very tricky and his case was made harder because of two factors: he is insulin dependent diabetic, and he had this disease since childhood. During his treatment, his symptoms became worse. His doctor was able to get our insurance to cover two months of IV antibiotic treatment. Just as he was starting to show improvement, the insurance would no longer pay for this treatment and his IV was removed.
In the meantime, we became avid researchers of this disease. To our surprise and horror, we learned that the Borrelia burgdorferi spirochete that was infecting my husband is a cousin to syphilis. And the spirochete can be passed to others in the same ways that syphilis is, through sexual contact and through the placenta and breast milk. Now able to see that the myriad, yet vague symptoms that my children and I had been experiencing for many years, we all were tested for Lyme and other tick borne infections.
I broke down and cried in the doctor’s office as we heard our results. We all tested positive for Lyme. My son also had Babesia, a malaria-like infection and Bartonella. My daughter also had Bartonella. My immune system had broken down from fighting the Lyme infection and had reactivated Mononucleosis.
Sadly, we were mistakenly relieved at first, believing that this was a first step towards getting better. Little did we know that this was the beginning of a huge, difficult, and stressful battle.
Most Lyme Literate doctors do not take insurance, which means all office visits are paid out of pocket. Each month, another $1000 would be put on the credit card, just for seeing the doctor. Each prescription cost us another $20 a piece. Thankfully, we had prescription coverage for most of our prescriptions. However, for some Rx’s, the insurance would refuse to pay, we would try to appeal, usually with no success. Every trip to the pharmacy would keep my stomach in knots, wondering who’s Rx’s would be able to get filled.
Feeling sicker than ever, we would travel to each of our doctors. My husband and I saw a doctor who was 50 minutes from our house. We were lucky; our children’s doctor is almost 2 hours away.
As we all began to feel worse, I needed to step up as an advocate for my family. I needed to call insurance companies, doctors’ offices, and pharmacies. It became a fulltime job. I was also working a part time job from home, and often that needed to take a back seat to my “health job.”
The school system became another job- advocating for my children’s special needs and situations. They needed to have 504 Plans in place. However, many of their teachers did not understand the severity of their illnesses. I am in constant contact with the teachers and administrators to educate them so that they can better help my children. It seems to never end.
Currently, we are living solely on my part time salary. It was $1000 a month, but due to the economy, it was recently cut to $500/month. I am not able to work outside of the how due to my own illness. We have racked up huge credit card debt, something we had never done before. We have drained our children’s savings accounts. We have had to apply for financial assistance for heat and electricity, Medicaid and free school lunches.
We thought we were doing everything right. We were good people, hard working, wanting the best for our family. Now, we are a statistic.
Our health insurance has let us down. It has kept us from getting the proper care that we need. It has put us into a situation where our future is unknown. It has created stress within my family that no one can imagine.
We will keep fighting. We will keep doing, because we have no other choice.
But we want to be heard. We want people to know that they too could be living the “American Dream,” only to lose it all like we have. The insurance company and pharmaceutical industries do not have our best interests at heart. That needs to change.
But it is also frustrating to see how long this divisiveness in the Lyme Community has been going on.
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