My Newest Medical Specialty*** UPDATED

Remember, Readers, how I have become practically board-certified in all those medical specialties I've been forced to deal with for so many years (neurology, psychiatry, developmental pediatrics, and rheumatology)?

Well, I am learning even more about the world of autoimmune disease. (That's rheumatology for all you uninitiated lucky folks out there who don't know.) Remember Saskia's possible lupus, and all those tests (and costs!) and symptoms and office visits? Well it turns out she's not the only one. Because all the ways in which I have been sick since November (very unpleasant ways, I might add) turn out to be likely inflammatory processes, and my blood work so far points in that direction.

Of course, I diagnosed myself weeks ago. I have a bad habit of doing that, to myself and others (do you know how many people I have diagnosed with Asperger's??? it's not even funny) -- and sometimes I am quite right.

This time I know I am. The burden is on my new rheumatologist to prove me wrong. (Some pending blood tests will tell all, I suppose.)

I think I have Sjogren's Syndrome. If I don't then maybe I have lupus with secondary Sjogren's (yes, that can happen, evidently, and you KNOW it would be just like me to get them both). I'll let you know what I find out.

What is clear is that the enormous stress of caring for Benjy all these years has not been good for my health, and has probably exacerbated my recent symptoms. That is a hard truth for a mother to hear when she loves her child so hard it hurts, but recently I have heard it.

So lots is brewing here. Benjy is doing better in the hospital than he was at home, and I am resting as best I can (while managing twenty phone calls a day and several meetings a week, not to mention visits with my boy).***** Today Lars made me promise not to drive into Boston to see Ben, because yesterday I was unbelievably tired and sick when I got home, I believe due to a longish walk in the sun with a good friend. You are not supposed to do that if you have an autoimmune disease because it makes you sick -- I know, that sucks -- but I did it to gather data. It just made me more convinced in my self-diagnosis.

Ugh.

But here is the beauty of it all: Sjogren's or lupus, or lupus plus Sjogren's, are not cancer. They are not heart disease. They are not one of those dreaded prion diseases I keep warning you not to Google.

In other words, they are not going to kill me -- not in 2013. (I believe the writer Flannery O'Connor died of lupus but that was in the 1950s so I am not going to worry about it.)

I may have even more crap to deal with going forward but I WILL be here for my children and my Lars. For Benjy, who will need me most of all, and for as long as possible. My sister was not given that chance. Cancer killed her while her kids were still so little there was no way of knowing what kind of people they would be come, or what they would accomplish. She did not ever get to know what beautiful and sweet and awesome adults the three of them became. And I would imagine, while her memory lingers in them, they do not REALLY remember her well at all. They were only ten and seven when she died.

That is more terrible than anything. So, I can deal with any rheumatological shit that comes my way. My biggest challenge henceforth (as is has been for several years now) is making sure, as best I can, that Lars and I do not suffer that most awful of losses, as my parents did seventeen years ago.

I have GOT to keep Benjy safe. We're working on it, with the best team you could ever imagine.

***** Not anymore, baby. I am done. Those phone calls wiped me out so utterly I could not do anything but sleep the rest of the day. Yesterday was a nightmare. And today once again I will not be able to drive into Boston to visit my boy -- I can barely function. I will not be able to get myself to Cambridge tomorrow for a medical appointment. I will not be able to get Saskia to her concert at the Museum of Fine Arts tonight without help. Oh, boy. Sorry for the SOB STORY readers. Just feeling...confounded.

This Lonely House

This house is so lonely without Benjy in it, I could cry. I woke up in the middle of the night to use the bathroom, and peeped into his dark, open bedroom. Because for a tiny moment I had forgotten he was gone.

His narrow bed with the white down comforter was empty.

I caught my breath and when my heart calmed I went back to bed. I woke Lars and told him I missed Benjy. "Me too," he said. "And the sad thing is I have so much work on my plate right now I probably cannot even visit him."

Because Benjy is back in the hospital, the same one I wrote about last October when this blog was born. He knew he was struggling beyond our ability to help him, beyond the collective abilities of all his outpatient mental health professionals, and he wanted to go. We left him last night at peace with his surroundings and himself.

It reminds me of the story of Mary Lamb, early 19th-century writer/intellectual and sister to the essayist Charles Lamb. I only know about Mary Lamb because in some college English class we read something by her brother, and the Norton or Oxford anthology offered a little blurb about them.

Apparently, Mary Lamb was intermittently "mad" (yes, the Norton or Oxford editors chose to use that word), and whenever she felt the madness coming on she would calmly and patiently ask for her strait jacket, and Charles would strap her up, and they'd walk to the nearby lunatic asylum. (Forgive me that -- it's what they called them in the 18th-19th centuries, and you'd be better off in prison. Really.)

I can't help thinking about Mary Lamb when I think of Benjy's understanding of his own needs, his willingness, and even sense of relief, when we told him we thought a hospital stay might be in order. He WANTED to go. (Except Mary Lamb stabbed her mother to death, so I hope the similarities end there! ;)

What Benjy said was: "I need to take a break from things. Life is too hard right now, so I need to step off it." He didn't mean permanently. What's wonderful and beautiful this time is that he is NOT suicidal. He is just completely non-functional, at school and at home. Deeply depressed. Withdrawn. sleep-dysregulated (sleeps all day at school, up all night at home). Unable to eat much. Ticcing so severely his body is never at rest.

For us, that may be the hardest part. Watching him tic relentlessly. Of all the things that make Benjy different, that one is the most public, the most obvious.

I know that one very well, thank you. It is a curse. There's chemical help for it, but at the very least it makes you fat. At the worst it makes you a cognitively blunted, fat zombie. It makes you walk and talk funny. It makes you need glasses, and to drink water every ten minutes because your mouth is dried out.

(HALDOL, I'M TALKING ABOUT YOU.)

I once swore I would NEVER, EVER make any child of mine take Haldol. The Soviets, according to my father, gave it to political dissidents to render them metaphorically impotent. So I was sure as hell not going to give it to any kid of mine.

Now, looking at my poor Benjy, I have to wonder what would be best. Because he's going to have to choose his evil. Would he rather be a weirdo due to the tics, which are exhausting to boot, or due to being a fat zombie (see above)? I'm afraid that may be a choice he has to make.

What is it about our family that we tend to be given shitty choices?

The Universe: OK, Anna, you can either have breasts and ovaries or I'll give you a fifteen percent chance of surviving into your forties. Quick, you don't have much time to decide!

Me: Uh, can I draw again?

Somehow, life doesn't want to reshuffle and give you anther hand. So you have to make dowith the one you got. Ben got the one that gave him Asperger's and Tourette's and OCD (I haven't even mentioned that DX yet) and mental illness. I got the one that gave me Tourette's and the breast cancer gene. Poor Saskia got the one that gave her what appears ever more convincingly to be lupus. (Did I mention that the day before yesterday her painful knees, thought by her rheumatologist to be runner's knee and not the arthritis caused by Lupus, because her knees were not hot and swollen, have now become hot and swollen? Troubles come in groups around here.

All I can say is, thank god Lars is completely normal. Except he's barking mad in his own, endearing ways.

Anyway, I am bracing myself for a lonely day, with no Ben to pick up at two-thirty (or hang out here with, as the case might have been) and Saskia out at a volleyball game until 7:30 or 8, and Lars no doubt working late.

Thank goodness for the Hellacious Hound, that's all I can say.

What I'm Up To

Greetings, faithful Readers!

I hope your (waning) collective summers have looked like this:

And this:

Mine has not been QUITE so blissful. But I do love the light, the cherry tomatoes ripe for the picking in our garden, and the lack of stressful HOMEWORK. I also like the later wake-up. Oh, yeah.

Here at Chez Delaunay we are dealing with several issues on the junior varsity level. Severe tics and growing anxiety on the one hand, and painful joints (one more piece of the lupus puzzle) on the other.

One cool turn of events: in spite of aching knees and elbows, Saskia kicked butt at her freshman volleyball tryouts and made the team despite stiff competition. I just hope the rheumatologist doesn't tell her tomorrow morning, at her appointment, that she can't play. That is one scene I do not want to witness.

Anyway, when not driving children all around greater Boston, here's what I've been (or will be) up to:

• Submitting stories to journals
• Writing an essay about one of my life's great regrets (it happened thirty-six years ago and involved me receiving precisely what I had yearned -- and pleaded -- for since young childhood. Ironic? Yes!)
• Applying for  Radcliffe Fellowship which, if I am extremely lucky and get one, will fund a year's worth of memoir writing (and then some)
• Conceptualizing the memoir I will be writing about raising a child who wants to die
• Preparing to apply to Yaddo and other artist's colonies for next summer (another endeavor that will require great luck, which seems to be in short supply around here)
• Writing a column pitch to an online literary journal, about -- you guessed it -- parenting a child with mental illness
• Figuring out whether we can get Saskia on Mass health like her brother. I think if the lupus Rx becomes definitive we can -- which can't happen too soon as these medical expenses are BANKRUPTING us
• More stuff I can't remember off the top of my head
• Sitting just quietly and smelling the flowers, like my favorite bull, Ferdinand (great story!!)

Thank goodness for unemployment!

Ugh

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.

WHATEVER YOU DO, DO NOT GOOGLE 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."

Crap.

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.