I was anxiously waiting for my name to be called in yet another poorly-lit waiting room. Doctor’s offices were once just an occasional means to an end: I went feeling shitty and I’d leave with a script from the omniscient doc to feel better. Now, they’re as common as my trips to the grocery store, and they no longer inspire hope but instead hopelessness. Lyme disease has both blessed and cursed me with a deep connection to my body so I KNOW immediately when something feels bad, and these rooms— they feel fucking bad. I waited, growing more anxious, feeling like I was stuck in a cage, wanting to see the sunlight, jealous of all of my friends enjoying the beautiful day. Call my name, call my name. I got up three times to check the sign-in sheet. Twitch, Check my phone, shift positions, take a sip of water, look at the clock, check my phone, try to focus on something else, and repeat. And one hour later, one second before I developed Trichotillomania, my name was called. However, this is always a false sense of relief since all that happens in this time is that I get to stretch my legs while I’m ushered into the next room where I’m asked to wait just a liiitttttlllee while longer. This particular experience was at Quest Diagnostics, a lab for drawing blood, so I felt extra annoyed that what could take five minutes —IF PEOPLE WERE FUCKING INTELLIGENT— was becoming a full-blown interruption to my evening. The woman who was about to draw my blood directed her stink of apathy at the computer screen, never even looking at me. I hated her for it— she wouldn’t even acknowledge me if we were riding an elevator together yet she was about to wrap a giant rubber band around my bicep so that my veins screamed and then jab a sharp object into the one of her choosing. I sat staring at her. FUCK YOU: ACKNOWLEDGE ME. Acknowledge the person whose information you’re staring at: You know my full name, birthday, weight, height, marital status, physical ailments, and my fucking financial bracket based on insurance so LOOK UP AND SAY HI. I was super moody. When she finally turned around, it was to grab my arm, get a vein, and stick me (I get stuck with needles at least three times a month so it’s not like I’m a stranger to the sensation or super uneasy about it anymore). This one hurt, and the fact that I had been holding my breath in anger for almost 2 hours wasn’t helping. It hurt so much more than I had expected, and it didn’t stop hurting. It throbbed. I squealed which provoked her to unsuccessfully attempt pulling the rubber band off which only made the needle shift in my vein so it was jabbing me harder. “Stop pulling the rubber band,” I pleaded. “Oh my, I’ve never had this happen before, I’m sorry,” she kept saying. I didn’t believe her. She pulled the needle out and the crease in my elbow pulsed with no relief until I passed out.
When I finally came back to full(ish) strength, shivering because I had sweat so much, I started to cry. I felt so violated…again. I was flooded with memories of doctors, hands, and needles meddling with my body. I thought of all of the healthcare providers who treated me like a mere inconvenience. I was overwhelmed. After another few minutes of getting back into the present where there is infinite safety I realized, for the umpteenth time, that my body is so smart, and it was teaching me yet another lesson. I hadn’t been on point with my self-care the previous couple of days, and it was like my body needed a reset. I needed a reminder that self-care comes first — I had been pushing myself both physically and emotionally: I didn’t eat enough that day, I had rushed to the doctor’s office, I had packed my schedule too tightly resulting in anxiety, and I wasn’t giving myself space to process Ian being gone, my Mother being here, and IVIG dose number four starting the very next day. I was being hard on myself about finances and beating myself up for all sorts of things. I had gotten out of my habit of ninja-level self-care, unfairly leaving the weight of my needs on my phlebotomist which resulted in a loss of consciousness. Interesting.
It was a much easier time when I trusted “the doctor.” I was taught to always trust medical professionals. “The doctor” always knew better: “what did the doctor say? did you go to the doctor? The doctor said you need to take this. The doctor said you were fine. The doctor said it’s just anxiety. The blood work came back fine so let it go..” I LOVED the virginal world of trusting people with any sort of medical degree. In 2013, I walked in to see my first lyme literate ND who happens to also be famous for her experience and research in the world of Lyme. I immediately undressed so she could see all of my rashes and, after 30 minutes of face-and ass-time, I left with prescriptions for three different antibiotics. She didn’t order any blood tests or get much of a history on me — she was busy and it was fine. I’m impatient anyway; I’ve always been on board for a quick-fix. Hence, I’ve always loved antibiotics. When the first round didn’t work, I gave over my credit card number freely for 15 minute conversations with this ND, and I took her advice for 10 solid months. I took something like 450 oral antibiotics over that time, prescribed by her. In all fairness, she continued to ask me if my body could handle them and I continued to say, “yes, if YOU think it will get me well then I can handle it.” I took crazy expensive herbs prescribed by her and my acupuncturist, never really researching anything. I didn’t want the responsibility of caring for myself, truth be told. Who does? I need so much —can’t “you” just do it? I was like, “charge my credit card, charge it however much you need, as long as you say what I’m buying will work.” Then, one day, my body fought back and started screaming at me. I had not had that experience yet — the experience of being in -tune with my SELF. Up until then, ten months into illness, I simply dosed myself as much as possible, blindly letting my doctor do what was actually my job: decide what was right for my body. So when I started experiencing a profound weakness every time I went to grab a bottle of antibiotics, I was confused. I would gag at the thought of swallowing another pill, I could actually feel my muscles weaken when I went to open a bottle. I couldn’t deny that my body was telling me something. It was shouting at me to STOP.
In retrospect, that’s when my recovery truly began: November of 2014. I needed a new treatment plan. It was between getting a PICC line and going the all- natural route(something I had NEVER in my life wanted to touch. I was madly pro quick-fix, and nothing about chewing on celery seemed quick to me). I had two friends in my life, both of whom had recovered from Lyme, one with a PICC line and the other all-naturally. But they gave me the same advice, “listen to your body, only you know what is best for your body. No one can tell you what to do, everyone is different.” This is true especially with elusive illnesses like Lyme disease where there truly is NO ONE WAY to getting better. Each body is different, and listening to my own intuition was the best advice I could have received .It was so clear. I knew, for some reason, that the only hope for my recovery was a natural route— healing from the inside-out. I began seeing certain medical professionals that treated me with kindness and care, and I started treating myself, researching and listening first and foremost to my body through all different kinds of herbs and treatments. I was improving, but I wasn’t getting nearly as well as I wanted to be. Again, I listened to my body and to what was being shown to me by “the Universe,” if you will, and all signs pointed to Ozone therapy with a Doctor, who treated many Lyme patients with success (now including me!), in Bali, Indonesia. It was in Bali that I first noticed just how much my relationship to my body had changed.
Lying on a long, flat medical table in a dark room finished with medical equipment that reminded me of a mad-scientists basement, I was waiting anxiously to get stuck with my next needle for round two of Ozone. The previous needle had brought me close to fainting, but after my best friend spooned sweet tea into my mouth, I recovered just fine. My doctor, a warm, light-hearted Balinese man in flip-flops, was leaning over me, his shirt falling on my face, gripping my forearm in search of a juicy vein. Squeeze- nothing there. Squeeze harder ..HARDER… a little something but not enough. Then he shifted to my left arm while his nursing assistant kept hold of my right.Get off of me, get off of me. Tears formed, I grew hot, and my body was shaking. I wanted to be treated with delicacy. That was the first time I realized I was traumatized from all of the doctors who grabbed me, touched me, poked me, dismissed me, misdiagnosed me, and mistreated me. My body, the same body I had abandoned and dismissed, the same body I had betrayed (especially when I went to visit the doctor) the 27 years prior, was now like my own child: I had lost my naivety, and I knew that if I didn’t protect my body then NO ONE would. Treating myself with such delicacy and love has been a major factor in recovery. Ever since I started being my own greatest ally, it’s been an uphill journey—albeit slow as fuck because apparently I needed a lesson in patience, but uphill nonetheless.
My doctor in Bali wasn’t doing anything wrong (he needs to find a vein) and my ND, though over-saturated with patients and a bit careless, was doing what I asked of her: more antibiotics! My phlebotomist, that bitch from last week, wasn’t NECESSARILY doing anything wrong either. My doctors aren’t supposed to act like the parents I never had (which I seem to just expect from EVERYONE). In this confusing world of illness, where I am so powerless over so much, including certain provider’s bedside manners, AND competency, I can focus on the one thing i do have power over: self-care. Am I showing myself the kindness and love that I wish the medical world would show me? Am I eating enough, drinking enough, and resting enough? Am I welcoming joy and wellness into my life? Am I keeping my schedule manageable? Am I turning to my friends for help with doctors appointments and blood-draws and IVIG treatments? If I think I’m not getting the right treatment, it is my job to first listen to what my body needs, second to do the research and see how I can get my needs met, then walk into a doctor’s office and advocate hard for myself. A doctor, like everyone else, is ICING ON THE CAKE. First, I need to bake the cake. I AM IN CHARGE HERE.
With Fun, love, and power,
PS: for support on your journey with illness, we are here