In high school I watched a TV documentary on how Oprah Winfrey became OPRAH. Her journey from being the daughter of an unmarried teenager in Mississippi, USA, to becoming arguably one of the most powerful women in the world, told me achieving power is not about where you come from or how you look. Instead, it is about working harder than everyone else. And so I began my own career as a journalist; never saying no, and working non-stop to make my own mark in media. Sadly recently, living that life started to hinder my health.
In the midst of producing a story for National Public Radio about my path to becoming a U.S. citizen, I began getting what looked like pimples on my chest. They were circular, round, bumps, with yellow-ish pus threatening to break through. But as an uninsured and super busy woman trying to be “Oprah”, I ignored them, hoping that like pimples, they would simply go away. But they spread, and soon I had “pimples” on my chest, stomach, and my abdomen.
Sadly, night time was the only time I worried about this “thing” going on with my skin. During the day I was too busy. And my issue was not yet visible to the world, so I pressed on. I’m embarrassed to say that it took a “pimple” showing up on my left thumb for me to take action. And by take action I mean me casually showing one of my girlfriends my thumb. I asked; “What do you think this is?” She took one look and immediately told me that I should go to the doctor. “It could be an infection,” she said. I didn’t tell her about all the other places this same “thing” was occurring.
After fully confiding in another friend, I was advised to head into a walk-in clinic. And for $83 – the discounted cost for paying cash, I was finally in front of a doctor. Feeling like I had to make the most out of my 83-dollar-visit, I unabashedly stripped. Thank God she was a woman. She examined my skin and asked me how long I’d had these “pustules.” Yes my “pimples” were now MD certified as “pustules.” I told her almost 2 months and she had the nerve to pull out her iPad and WebMD my symptoms. She even wrote a prescription for one set of antibiotics, changed her mind after reading something else, and then wrote out another prescription for another set of antibiotics called, Cefalexin. I was horrified! However, I gratefully took my prescription to Walgreens and paid full price for my “cure”.
I took Cefalexin once every 6 hours, for 7 days, and my skin cleared. But only for 2 weeks. By mid-March my “pustules” came back with a vengeance. Meanwhile, I’d made an appointment with a Public Hospital. You know, one of those hospitals for poor people. Well guess what? As an uninsured Freelancer in New York City, I am the new face of poor! My appointment was coming up, so instead of paying another $83 at the walk-in clinic, I waited another week.
My Public Hospital appointment arrived, and based on my income I qualified to pay $15 per visit, and $2 per prescription. That was the good news. The bad news? My doctor that day was an older West-Indian man, who proceeded to ask me if I was “sexually active” in a way that made my skin crawl. So no. I did not strip for him. He ordered my blood work, gave me a prescription for Doxycycline; malaria pills for an upcoming trip to India, and I left. “Pustules” unaddressed.
I went back 2 days later as a walk-in patient, and requested to see a female doctor. There was only a female Nurse-Practitioner (NP) available that day. I waited over 2 hours to see her. She was a very sweet Asian woman, who was being shadowed by a NP in training, a Caribbean woman who looked to be in her early 30’s. I stripped in front of them both. I was examined, and told by the NP, “This looks like herpes.”
“Like what?” I said.
“Herpes,” the NP in training repeats. “Were you tested for STDs last time you were here?”
“No, but I’m pretty sure I don’t have herpes.” I said, trying to advocate for my sexual health.
“It can be dormant in your body for a long time,” the NP tells me, as she writes a prescription for Acyclovir; herpes medication.
I wanted to tell them both about my yearly trips to Planned Parenthood, a reproductive health clinic, for check ups. And that I was recently there after breaking up with my Ex in late 2012. And that I was a Sexual Health blogger for God’s sake and I would know if I had herpes! Instead I calmly requested to be referred to see the dermatologist. Thankfully as it was a Wednesday, and the dermatologist is only in on Thursdays, I was back the next day. There I was again stripping, this time for the dermatologist, who I’ll call Dr. R. She took one look at me and said, “This is Folliculitis, an infection that occurs around hair follicles.” I wanted to hug her! Not just because she confirmed what I already knew, that I didn’t have herpes, but because she was so confident in her diagnosis. She told me Doxycycline, the same pills I’d be taking for malaria, would treat Folliculitis as well. I just needed to take 2 pills, twice a day instead of 1, so she prescribed me more pills.
The following night I left JFK for New Delhi Indira Gandhi International Airport. And on my 2nd full day in India, the day I was leaving Delhi for Jaipur, I woke up with “pustules” up and down my arms. I didn’t want to believe the infection had spread, and not wanting to relay my “skin-drama” back-story to anyone, I let my roommate in Jaipur convince me it was a severe breakout of heat rash. I continued taking Doxycycline and ignored my arms until after my trip.
Two Thursdays after that, I was back at the Public Hospital waiting in the dermatology department. This time I met Dr. S.
“So last time you were here we gave you Doxycycline. How’s it going?” she asked.
“Not good,” I said. And I rolled up my sleeves to show her my arms.
This time I was told to strip, as she went to get Dr. R. Together they examined my skin, and decided to remove a “pustule” for a culture examination. And while we waited for the results they were “throwing the kitchen sink at me”– their words, not mine. I was given Cefalexin again since it originally helped after my walk-in clinic visit, treated for skin fungus, and best of all… scabies.
Why was scabies particularly great news? – Hoping you can sense my sarcasm here – Well I had to tell anyone I shared a bed with to get treated too. Meaning the guy I was “sort of” dating. That conversation was hard and awkward, but he took it in his stride. And thankfully he didn’t need to get treated, because the culture came back and revealed I didn’t have scabies, or skin fungus, or folliculitis, or herpes. I was diagnosed as having Subcorneal Pustular Dermatosis. Also known as Sneddon-Wilkinson disease, a condition that causes pustular eruptions on the skin. It is rare and benign but chronic.
Yes chronic. Meaning it can come back even after I finish taking my newest prescription, Dapsone. So that means I have to avoid things that may trigger it. What may trigger it you ask? Well Dr. R suspects gluten, a protein composite found in foods processed from wheat and related grain species, including barley and rye. So I am 3 weeks into living without bread, pasta, most of the seasoning I learned to cook with, oatmeal as I know it, and anything else with wheat, which I’m learning is in just about everything!
I often wonder whether all this was just Gods way of making me commit to watching what I eat? Or even more importantly, His way to get me to do the following:
1. Make ME my priority number one! Now that I’m maintaining a gluten free diet, I cook most of my own meals, and know what’s in everything I eat. I also go to the gym 5 times a week. And I’ve been making all my follow up appointments regularly. These are all things I swore I didn’t have time for, before I started dealing with this condition. Planned Parenthood would attest to this; I was the queen of rescheduling appointments. But what good am I to anyone, if I’m not healthy?
2. Inquire about my family’s medical history. I still don’t know how I got this in the first place. According to Dr. R there really isn’t a lot of research on Subcorneal Pustular Dermatosis cases, to even point me in an accurate direction. But one thing I do know, autoimmune diseases, which it is, runs in my family. So I will be asking my parents and my grandma about their medical histories, and their parents’ medical histories!
3. Be interested: Doctors need your input! Yes – I will be telling everyone I meet how important it is to be an active participant in figuring out and maintaining your health. I would not have reached this point without being my #1 advocate! And I truly believe asking questions got me better care. Dr. R and her team went out of their way to help me understand every step in this process, and that’s simply because I showed interest.
4. Maintain a skincare regimen. Taking a trip down “vanity road” I must admit I am eager to get my skin 100% back to its smooth-chocolatey state. Weeks of treatment cleared up the pustules but dark scars have remained instead. And now, for the first time in my life, I have committed to a rigorous nightly routine of toners, masks, and creams. Yes – I’m being forced to pamper myself. The horror!
I also wonder what Oprah would say about all this?
Image source: Beyond Black & White