About two months ago, in early June, I noticed what looked like a small scratch or cut on my torso. I thought it was pretty odd that I wouldn't remember getting hurt in such an unusual place. What's not unusual is for me to discover a random bruise or bump on my legs or arm out of sheer clumsiness. But this red spot got my attention.
Next time I was with my mom, who is a nurse, I asked her about it. She said she wasn't alarmed, and to watch it to make sure it heals and goes away. About a week after finding the first spot I took my trip to
Chicago. The trip was awesome, and I didn't notice anything new.
Shortly after Chicago though, I started finding more and more spots on my torso. I wracked my brain thinking of anything new I introduced to my diet, my beauty regimen; I tore apart my apartment multiple times looking for bed bugs or anything else that might be causing the irritation. Nothing came up as the source of the problem. Then I started thinking maybe I developed an allergy to something that was already in my diet (and I subsequently lived in fear that I may have to remove gluten or dairy from my diet...I am not built to follow the trendy gluten-free diets as seen all over Pinterest, people. I need my guilty pleasures of pizza, hot & salty french fries, beer, and ice cream. #priorities).
Fast forward two weeks and I'm off to the Pacific North West to explore
Seattle and
Portland. We hoped that while I was away from home the spots would start to go away, letting us know that it was something specific to the environment I was in at home. But as the days of my trip went on, the irritation spread further throughout my body so that by the time I returned I had them everywhere- torso, neck, chest, arms, and legs.
This past January I turned 26 and was dropped from my mom's amazing health insurance. At the time I figured since I was young and healthy, I could just sign up for MediCal and receive free health insurance because
One word to describe my entire frustrating, upsetting experience with MediCal? Clusterfuck.
After calling to schedule an appointment to get seen by my new primary physician and being told the earliest I could get in would be August 11th, then going in repeatedly for the "walk-in" hours two weeks in a row, waiting for two hours to be seen for just five minutes, then given a prescription for scabies even after telling the doctor I was sure they weren't bugs, I just about lost my shit (and tears...I lost so many tears).
Even though it felt like the Universe was conspiring against me in the MediCal realm, it was opening up another opportunity to be seen by a real dermatologist who knew what she was doing. My mom remembered she knew of a dermatologist in town. Enter Dr. Alison Boudreaux and her P.A. Sandy-my two skin heroines and healers. These women are bomb. The whole office made me feel welcomed and accepted, even though I felt like I looked like a leper. Dr. Boudreaux was about 80 percent sure that was I had was a rare skin disorder called PLEVA. Because her office doesn't take MediCal, and we (read: my gracious mother) were paying out of pocket, we decided to delay a biopsy.
After the initial office visit and bonding with my new bff's I started on a regimen of strong antibiotics. A week later I went back in for a biopsy (two, actually) and was able to provide entertainment for their Friday evening by nearly passing out- requiring multiple ice packs, the use of an oxygen mask, and trail mix. I mean, I do what I can to make the people around me entertained. You're welcome.
The pathology lab was amazing and had my results by Wednesday. Officially PLEVA. With this confirmation came a sense of relief that we knew 100 percent what it was, that I was already doing what I could to help prevent the spots from getting infected, and that time would slowly move by as my body started to heal itself.
Patience and the ability to wait are two of my lesser known qualities...probably because I am not very good at either of them. At least one yoga practice per week is dedicated to cultivating more patience and stillness (and this is why I keep coming back to my mat...namaste right here and be settled in the moment).
It's been a challenging past two months, to say the least. Initially everything was unknown and frustrating. I never grew up hating my body. I grew up thinking (& still feel) that it would be amazing to shed 15 pounds, or to get laser hair removal, but I generally have had positive self-esteem. But PLEVA has thrown me a huge curve ball. I am incredibly self-conscious now, always assuming that when people out in public see my skin covered in this rash that they are disgusted and judging me. It's been 100 degree weather here for several weeks and I have been sweating through jeans and long sleeves just to avoid showing my skin. And honestly I don't know which is harder- to be hot because I am covered head to toe, or feeling depressed about my skin when relaxing in shorts and a tank while home alone...
About two weeks ago I noticed many of the spots on my torso starting to heal. PLEVA can take anywhere from several months or even up to a year to self-revolve. I hoping that since it first showed up on my torso, that is where it will start to heal, and then finish through the rest of my body. Most days I am able to maintain a "fuck it" attitude and feel comfortable enough wearing a dress. Other days I slip back into being ashamed and embarrassed of my skin.
Through all of the darkness and sadness though, I have felt such intense humility and gratitude toward the people in my life that care about me. My best friend Elaine has been amazing at checking in with me regularly to see how I am doing emotionally and physically. Both of my yoga communities have been concerned for my health and wellbeing and offered up so much time and research and suggestions on how to help fight the disorder. My family has been supportive and encouraging, assuring me that I am handling it with grace and maturity. And my mother especially has been an unmatched supporter in my corner. She has helped me financially with the doctor's visits, emotionally with the stress and anxiety of everything, she's cooked me so many dinners when I was feeling shitty and needed comfort, and she has always believed in my beauty, whether it was my physical, spiritual, or emotional state.
Maya Angelo was a beautiful woman and writer. Her words have inspired me and comforted me, reminding me that it is our sadness, our darkness, our human life experience that most connects us, makes us vulnerable, makes us beautiful in the most remarkable ways...
"Each of us has lived through some devastation, some weather superstorm or spiritual superstorm. When we look at each other we must say, 'I understand. I understand how you feel because I have been there myself.' We must support each other because each of us is more alike than we are unalike."
Maya Angelo
xxo
P.S. I may have mentally committed to doing a nude photo shoot once this PLEVA has officially left my system. Internet, I am counting on you to hold me accountable to that declaration.
