A reader wrote in recently in regards to fighting Lyme. She wrote, “I’m full of fear. I admire your courage and energy.”
Energy? Really? Every day I have to drag myself out of bed and muster the energy to do the dog walk. That is usually all it will take to wipe me out. The rest of my days are spent surfing the sofa. If I’m feeling ok, I can either sit at my desk and write or process photos or make dinner. (Note the lack of posting even one of my project photos for the last 5 days.)
Sunday, I finally felt decent enough to go on a second dog walk of sorts. We just walked the .5 mile trail that runs through our property so we could clean the trail up from wild life scat and left over carcasses. I was amazed I had the energy for that extra walk plus make a real dinner. But the next day I was right back to my shitty Lyme self, barely enough energy to do a dog walk.
MWD, the dogs and I spent the early evening cleaning up all the mountain lion, coyote and bobcat scat all over NitWit trail which runs through our property. And small fresh carcass of something with 2 femur bones and a hip bone. Nobody told me mountain living would be so glamorous. 142/365
Which brings me to fear. I have Lyme disease, and it’s in every system of my body and it’s damn painful. What’s the very worst that can happen now?
Dr. Jemsek, a leading Infectious Disease doctor who treated HIV/AIDS in the earlier years, and now is leading the charge against the small, but powerful group of ID doctors consistently denying chronic Lyme had this to say in his remarks to the Northern Carolina Medial Board:
“Most of my HIV patients used to die … now most don’t … Some still do, of course. My Lyme patients, the sickest ones, want to die but they can’t. That’s right, they want to die but they can’t. The most common cause of death in Lyme disease is suicide. In the current day, if one compares HIV/AIDS to Lyme Borreliosis Complex patients in issues of 1) access to care, 2) current level of science, and 3) the levels of acceptance by doctors and the public, patients suffering with advanced Lyme Borreliosis Complex have an inferior quality of life compared to those with HIV/AIDS in NC. This statement may seem heretical to some of you, I’m sure. But I can say this with authority — and I am really the only one in this room today who has the intellectual and experiential authority to do that.”
At some point, every Lymie experiences wanting to die due to the pain of the illness. There are times, short-lived, during the course of my own illness that simply living, breathing and moving, becomes so hard--so very hard--it’s unimaginable. In those times, dying just didn’t seem so scary. Yes, it’s true. The disease gets so bad that every life source ambition is void.
I don’t fear Lyme disease or not recovering because I’ve had it for a decade. I don’t fear the difficulty, discomfort or pain of treating Lyme disease because I’ve lived with its pain for a decade. I don’t fear dying from Lyme disease. In short, Lymies fight because there’s nothing to fear and they have nothing to lose except pain. If you recover or die, you’re out of pain.
Rattlesnake Grass 141/365
The one thing that can overcome fear is action. I’ve always been action oriented and not much an over-thinker. I was always more of a behavioral psychologist than a psychoanalytical one in grad school. On the other hand, it’s hard to be action-oriented when one is so chronically ill that it’s challenging to move. I mean, how much action can I actually do?
When my mind is clear, I read and educate myself on the disease so I understand what’s happening to me as I go through treatment. Treatment without education can be terrifying because it’s damn hard and painful. I’ve carefully researched and chosen a team of doctors whom I trust. I follow their treatments to the letter. I manage my symptoms and treatment in spreadsheet which changes month to month so I have a standing record of treatments I’ve taken. I keep a journal that I only use for the really bad days or unusual side effects rather than as an obsessive note taking habit just so my days are not entirely consumed with Lyme disease. This journal helps my doctor revise my treatment each month and makes my visits super easy on both of us.
I detox religiously on doctor’s recommendation, charcoal, detox herbs and epsom salt and clay baths, no matter how uncomfortable they are. Here's the thing about baths: for a Lymie, they hurt. They can range from mildly uncomfortable to extremely painful. But they are a necessary part of the treatment. Skin is just one of the many detox pathways so you do it, despite the discomfort.
I practice yoga whenever my body allows and I allow myself a guilt-free pass when it doesn’t. Above all I listen to my body because it educates me more than any book or physician.
Basically I keep fighting, keep taking action, until one way or another I am out of pain. That’s all there is to it. Through education and action, there’s nothing to fear.
I also make room for a few hobbies like my obssession with photographing Honeybees:
For me, none of this feels courageous, as the reader admired in me. And I realize that’s a loaded statement because the first thing people say to people with severe illnesses such as cancer is, “You’re so brave.” But to me, there is nothing courageous about fighting or taking action to survive, especially when there is nothing to lose except pain.
The real courageous ones are the doctors, like Dr. Jemeske (watch his 9 minute moving speech), putting their practices, and livelihood, on the line every day to help Lyme patients. The politics around this disease is so heated that some doctors who believe that Chronic Lyme disease is a real diagnosis and treatable, will not go near a Lyme patient for fear of being sued by the medical boards. Many Lyme doctors have been sued or brought under scrutiny. There’ve been excellent doctors who’ve lost their practice or stopped practicing all together because fighting lawsuits became too expensive. Recently Lyme Literate MD, Dr. Jaller, who was being sued by the state medical board over Lyme disease, won his lawsuit, with the state attorney recommending that the medical board take an education course on Lyme disease. That’s a huge victory for the Chronic Lyme disease community. These are the courageous souls who risk their careers for us. And I’m grateful to them.
I will admit there is some element of courage in being open and public about my illness given the politics and angry opinions about it. But this disease needs every voice it can get. My being ridiculed is so small in comparison to those suffering much worse symptoms than I am.
As for my real fears? I fear getting eaten alive by an alligator. I fear falling out of an airplane without a parachute. I fear the cracker going soft on me. I fear the criminal eating every last shoe I own. But Lyme disease? Phooey. I don’t fear Lyme. I don’t fear fighting Lyme. And I don’t fear dying from Lyme while fighting it. And for any Lymies reading this, as long as you educate yourself and take appropriate action with a trusted medical provider: you shouldn’t either.
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