Figuring out the skin I’m in (Part 1)

June 4th, 2013  |  by Veralyn Williams |  Published in Blog, Personal Essays  |  2 Comments

Earlier this year, in the midst of producing a story on my path to U.S. citizenship, I began getting what looked like pimples on my chest. Uninsured and super busy, 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, nighttime was the only time I worried about this “thing” going on with my skin. During the day I was still busy. And at this time my issue was not 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 REALLY take action. And by take action I mean me, casually showing one of my girls my thumb. Asking, “What do you think this is?” She took one look and immediately told me I should go to the doctor. “It could be an infection,”  she said. I didn’t tell her about the rest of the 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 an antibiotic, changed her mind after reading something else, and then wrote out a prescription for another antibiotic 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… 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 NYC… 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.

[Side note: I initially made the appointment, so I could get a physical and some malaria pills before traveling to India. I called in February, and the first available appointment was in March.]

Finally my Public Hospital appointment arrived, and based on my income I qualified to pay (drumroll please) $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 (my malaria pills), and I left. “Pustules” unaddressed.

I went back 2 days later as a walk-in, and requested a female doctor. There was only a female Nurse-Practitioner (NP) available that day. I waited over 2 hours for 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 STD’s 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 for check ups. And my recent trip there after breaking up with my Ex late 2012. And that I was a Sexual Health blogger for Gods sakes and would know if I had f**king herpes! But instead I calmly requested a reference to see the dermatologist on staff. Thankfully it was a Wednesday, as the dermatologist is only in on Thursdays. I was back the next day.

After stripping the moment I went in to see 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, 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.

[Side note: Can you imagine how much my medical bills would be if I wasn’t at a public hospital paying $15 per visit, and $2 per prescription? I cringe at the thought!]

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” backstory to anyone, I let my roommate in Jaipur convinced me it was a heat rash. I continued taking Doxycycline and ignored my arms until after my life changing 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 biopsy. 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” (totally being sarcastic by the way)… well I had to tell anyone I shared a bed with to get treated too. Meaning the guy I’m sort of dating. That conversation was hard and awkward, but he took it in stride. And thankfully he didn’t need to get treated, because the biopsy came back and revealed I didn’t have scabies, or skin fungus, or folliculitis, or herpes… but Subcorneal Pustular Dermatosis, also known as Sneddon-Wilkinson disease. Feel free to read about it here, but the main things to know is its rare, benign, and 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 just about everything!

One must wonder, was all this just Gods way of making me commit to watching what I eat?

As stressful as this experience has been, I have learned so much about doctors and medicine. Apparently things really are like what we see on Gray’s Anatomy.

Doctors are just making educated guesses, and when a rare patient (like me) comes along they have to do their research just like any other occupation. Oh and by the way… being a patient is a full-time job! There is no way I would have been able to go in as much as I needed to, if I worked a 9 to 5. (Or in my case a 9 to 5 and then a 8 to midnight.)

And even now in my effort to take care of myself long term I am cooking 90% of my meals, working out everyday, and trying to be natural in every way.. including my hair, which is a totally different drama.

The sliver lining: For once I am my number one priority!

Responses

  1. Anonymous says:

    January 10th, 2014at 3:25 am(#)

    Oh wow. Great story. I’ve had a few run-ins with standard medicine myself. One thing I learned: They have a very limited, materialist conception of the human being. This is helpful, to a point, but I found I needed to get a deeper mind/body/spirit sense of what was happening to me, which helped me make positive changes. We’re emotional, intellectual, energetic, and spiritual creatures. DIs-ease can take root on multiple levels. Sounds like you had an experience of running into the clear limitations of the materialist view. You learned that toying with the physicality of it (medicines) would only go so far, and also what triggers it. I would nudge you and ask further: What do you think is the cause of the condition?

  2. Ms. Veralyn says:

    January 10th, 2014at 3:45 am(#)

    I believe my diet had everything to do with what caused it. I’ve been weaning off the medicine, now I only take a fraction of what I started with, and it hasn’t coming back. So no gluten has worked so far.

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