Flushed

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I took this picture on the Santa Monica Pier in 1987. For years it hung above my desk. I always wanted to work it into a story, but could never find one where it fit. I’d forgotten all about until last week, when it turned up among the hundreds of old photos I’ve been diligently digitizing, creating an archive for my family. Resurfacing when it did, the pun of “palms red” seemed like an omen, even though it’s not my palms that are red. It’s my face.

My face has been getting really, really red recently, as if I’m really, really embarrassed. Or sunburned. Or allergic. To wine? To those little green chilies from the Indian store on Hope Street? It was a mystery, and weird, and also a little, well, embarrassing, especially when it made everyone stare at me and start asking what was wrong. But it didn’t strike me as particularly worrisome. It certainly wasn’t the sort of thing I’d think to mention to a doctor.

I felt the same way about this other odd thing that’s been happening. About ten minutes after a hot shower, my legs begin to itch. A lot. Crawl-out-of-my skin itch. Lotion helps. Sort of.  But not as much as remembering that the itching will go away in about fifteen minutes, and that I should keep my feet and legs bare until it does.

I’m good at working around problems. Why call the plumber when you can jiggle the toilet handle? Why mend the hole in the elbow when you can wear your sweater with the sleeves pushed up? Why go to all the trouble of fixing something that’s not really broken, but just not working exactly right? You can probably guess where this is headed.

Last week I had some matter-of-course blood work done for something relatively minor and entirely unrelated to blushing or itching. The results came back…interesting. Come-back-for-more-tests interesting. Condition-you-never-heard-of-with-name-it-took-me-three-days-to-get-straight interesting.

They’re still not positively, absolutely sure, but it looks like I’ve got a thing called polycythemia vera. Basically, too many red blood cells. Poly as in lots. Cyt as in cells. Hemia as in blood. Vera as in true, as opposed to derived from something else. Meaning I was born with this. Each year in the United States, about 3,500 new cases of polycythemia vera are diagnosed. The condition is slow to develop. It usually shows up in folks when they’re between 60 and 80 (I turn 56 next month), and more often among Ashkenazic Jews (like me) than in the general population.

Too much blood isn’t good. Think strokes, blood clots, heart attacks. And so far no one’s found a cure. They do know how to manage it, though. Not by jiggling the toilet handle, but by pushing up your sleeve for periodic phlebotomies. I’ve never been too good about needles. But I’m about to get great at them. I get my first shot at it this afternoon.

It’s weird to think that I’ve spent my whole, healthy life with this mutation sitting there, waiting to be revealed. It’s like understanding, decades later, what the psychic advisor at the beach meant by her cryptic divination. Or like finding the crucial clue in the corner of the snapshot you took of something else. It’s finally figuring out that the disparate details you’ve been fiddling around with forever really do fit into the same story.

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13 Responses to “Flushed”

  1. R.L. Saunders Says:

    I will not offer you a pot roast because it’s too soon for a Ring Theory joke, even if I’m just trying to make you feel better. But seriously, I’m really sorry to hear this and I’m glad you’re at least sort of getting it figured out. And I’m thinking of you while you face your fear of needles. I’ve never, ever heard of this. Thank you for sharing about it, Ruth.

    • Ruth Horowitz Says:

      Thanks, Rhonda. Managed not to pass out during the blood-letting, although I did break out into a bit of a sweat. Next time will be easier. Nurse Beth was most sympathetic. Although I’m not sure how much comfort I can take in her confession that 15 years of sticking people has not cured her own needle phobia.

  2. Kathy Quimby Says:

    It is fascinating how these conditions will suddenly manifest. You are also handling it much more calmly than I did the discovery that my daughter and I had Marfan syndrome.

    • Ruth Horowitz Says:

      I’m good at handling it on paper, maybe. If you’d seen me at 1, 2, 3, 4, and 5 o’clock this morning, you wouldn’t think I was taking it all that well.

  3. Amalia Gladhart Says:

    Every good wish, Ruth. Coupled with admiration for the elegance with which you wind up this post, tying together premonition, diagnosis, and story-telling/writing.

  4. Marlene Greene Says:

    Leave it to you to come up with something I’ve never heard of – so trend setting of you. Off to Google I went.
    I’m so sorry you have to deal with this – thankfully, you were diagnosed and it will be taken care of. Sounds like it can be totally controlled.

  5. jan donley Says:

    Fascinating story. I love how you write about your experience. There is subtle humor. The jiggling the handle metaphor is wonderful. I understand, all too well, a diagnosis that leads to more doctor visits and uncertain outcomes. I wish you well on this journey.

  6. Let It Bleed | Giving Up The Ghost Says:

    […] Pictures worth half a thousand words « Flushed […]

  7. Nursing My Diagnosis | Giving Up The Ghost Says:

    […] have been using this line on myself a lot lately, since I received the surprise of my bizarre diagnosis. It’s been a lot to deal with, physically and emotionally. But it also offers a lot of […]

  8. Getting the Treatment | Giving Up The Ghost Says:

    […] the beginning of April, I was diagnosed with polycythemia vera — a congenital condition in which the body produces too many red blood […]

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