I WILL bend low in the grass when I want to—perhaps to take a photograph of a lovely flower for my photo greeting cards http://www.encirclepub.com/com/gnstore. But I WILL cover my legs and arms. I WILL wear a hat. I WILL check for ticks when I come inside. I WILL use insect repellent as necessary. And I WILL get out there as much as my Lyme symptoms will allow.
Onto other nemeses: insurance companies. When I was first diagnosed with Lyme, my insurance company paid (without question) for the oral antibiotics I was prescribed. No red tape; no hassles, no denials. They paid for a few months of oral antibiotics (no red tape; no hassles, no denials). My physician wrote those prescriptions specifically for Lyme disease. After reading many horror stories about insurance companies denying Lyme treatment, frankly I was very surprised that they did cover my medication and I counted my blessings. Fast forward to just a couple of months ago, when I could no longer physically tolerate the oral antibiotics and I was prescribed the injections of Bicillin LA. Except for side effects that are tolerable, I am now up to the target dose (one shot in each leg every three days, or 2.4 million units every three days). And guess what??? I am FINALLY getting better. After more than three years of driving rarely because of my fatigue, I am driving more often. When the fatigue wall comes down, it typically comes down at 6 pm instead of 2 pm. My burning and stabbing pains are almost gone. (My cognitive issues and heat intolerance are lingering.)
But I AM GETTING BETTER! I know I will have relapses as more Lyme dies off in my body in cycles. I cannot predict from one day to the next how my symptoms will be. But just recently, I drove 240 miles to visit my children and grandchildren (a HUGE step). My work days are longer. And so what does my insurance company do? They deny coverage for the Bicillin. Finally, our very own insurance company nightmare.
My pharmacy appealed their decision and lost. Subsequently, I verbally appealed (pending now). If I lose my verbal appeal, I will do a written appeal. Meanwhile, we are paying over $1,200 out of pocket to receive the medicine that is helping me get well. I am lucky that we found a way to come up with the money. But it will be month-to-month if I am denied coverage completely. Who has an extra $1,200 a month? I had no documents in front of me when I made my verbal appeal by telephone. I made it on a cognitively-challenged day. I told them that I assumed they were denying me coverage based on the fact that they don't recognize my diagnostic criteria and that they do not cover Lyme medication for more than thirty days or so. Based on those assumptions, my three main points were: 1) they already "recognized" my diagnosis by paying for oral medications for Lyme; 2) they already were willing to pay oral antibiotics for Lyme treatment for longer than thirty days and 3) I am recovering—so wouldn't it be in their best interest to have me well (duh)? We'll see what happens. As in going outdoors, I won't give up.
Now onto the must-see documentary. If you have Lyme, think you have Lyme, love or know someone who has Lyme, you MUST see "Under Our Skin." From the film's website: "Unfolding like a real-life thriller, “Under Our Skin” exposes the hidden epidemic of Lyme disease and reveals how our troubled health care system is failing to address one of the most serious and mysterious illnesses of our time." Go to the website to find out when it is showing in your area. Better yet, buy the DVD and share it. The film opened my eyes to many sides of the Lyme controversy that I knew a little about, but now I feel much more educated. It presents both sides of the controversy. Go to: http://www.underourskin.com
So, get out there in Mother Nature! And don't (ever) give up fighting for your medical rights. We're going to get better.
