Thursday, March 22, 2012


This is the longest space between posts yet. There are a couple of reasons for long spaces between posts:

1. We're happy, regulated, and not in train wreck mode. (Who wants to read about The Orient Express with no murder -- just a bunch of prosperous, well-dressed folks eating caviar and gliding across the landscape in all their poshness?)

2. We HAVE been in train wreck mode and therefore writing is too hard. Sometimes sheer confusion -- or exhaustion -- keeps me silent.

The past week we've been a bit of both. We were worried about Saskia's health, and worried about Benjy's school placement. We've had half-answers and full answers. some we like, some we don't.

The worst first: Saskia.The better part of the past 24 hours I was supremely happy. I had no further information about Saskia's lupus-like symptoms (lupus can take years to diagnose) but we'd gotten her in to a nurse practitioner at a dermatology practice, because the lesions she had developed on her arms, legs, trunk and face over the past six weeks had gotten worse and were multiplying.

Her PCP did not know what they were. The rheumatologist said they did not look lupus-like. So off we went to the dermatologist. (If you wait a few weeks I'll be writing about her other ologist -- the hematologist. Isn't life grand!)

I'm going to start abbreviating because I'm sick of writing out these names. The derm ruled out our greatest fear -- DO WE HAVE BEDBUGS????? YUUUUCK!!!!!! -- and said it WAS atypical for a lupus rash but she would test for that. The other thing she was going to test for was something called PLEVA.


I Googled pleva. I got scared. I exxed out. But yesterday (hence my 24 hours of happiness) the NP called to say, yes it IS pleva, but it's acute pleva as opposed to chronic, and what that means is, after a month or two it will be gone forever.

I did a little happy dance. Because we can live with two months, right?

So I kept on feeling good, had an enjoyable writing group meeting, and when Lars got home at 11, the two of us took the hellacious one for a walk. That's when the somewhat less than 24 hours of happiness leached away. Because Lars said, "Did you actually READ those articles on pleva? Because it doesn't seem to be as benign as the NP said."


I decided to wait until this morning to delve more deeply into the charming subject of acute pleva. And someone must be lying, because the story I got from the NP is incompatible with what I read on line, which is that you can be stuck with these lesions FOREVER. The pictures made me gag. Saskia's are not so offensive -- it looks a bit like she has measles -- and not so plentiful. But she is a FOURTEEN-YEAR-OLD GIRL! She is profoundly mortified by her face and body right now. the other day when it was almost 80 degrees out she wore a sweatshirt all day in her un-airconditioned school. she came out totally dehydrated.

My poor, poor girl. I would give anything to take this from her. I wish it were me -- what would it matter? but for HER? And if she inherited my breast cancer gene she'll have a whole lot of impossible, maybe life-changing decisions to make when she's a young woman, I hope pleva and all her other lupus-y shit is enough. Whoever makes these decisions (her genes, I guess) had better have some compassion.

It's hard not to wallow is despair right about now, I look at other families whose kids don't seem to have any  medical or psychiatric issues, and I think, WHY US?? Of course, I realize there are hidden issues for just about everyone. but still, we are surrounded by healthy, happy kids here in our town -- and our kids have been stricken so hard. It is NOT fair. (And now I'm hearing the voice of my Dad saying, "Well, life is not fair, Anna." Wise words from Dad, but they do not really help -- not then, not now.

But I DO have some good news! My fears that our school district was going to yank Benjy from the Joy School, ostensibly in his own interest but really because it is extremely expensive? Those were UNFOUNDED. The district is behind us. I suppose that could change at any time, but for now we're good.

SO: Somehow I have to keep slogging along. We all do. If anyone has any ideas for hiding dark lesions on a girl's legs, arms and face, I would love to hear them.

Today, at least, she went out in a skirt and short sleeved shirt -- even if she did insist on wearing pantyhose.

THAT, Readers, is progress.


  1. Ugh, sorry to hear your daughter is dealing with that. I haven't googled it yet...sometimes I take people's warnings seriously! I really hope it isn't a forever thing, though. And glad your school fears were unfounded! I dream of the day we have an ideal school situation.

  2. Thank you for the support, Jen!! We're hanging in there...and I hope you do get the dream school for Katie...she sure deserves it.