Tuesday, January 29, 2013

Endoscopies and Otherendoscopies

So, it turns out my ravaged digestive tract was not being caused by the new meds. The meds are history, and I still can barely eat, barely do more than lie on my couch, wrapped in the afghan mom knit me, and be served by Lars and the kids (hey -- I could get used to this)!

The good news is, I lost ten pounds in the past two weeks. The bad new is -- ugh.

So on Thursday I am having an endoscopy. For someone with a peculiar fear of things going too far back in the throat this is quite anxiety producing.

"You'll be asleep," the young woman in scheduling assured me.

"Like, asleep?" I said.

"Well, not asleep, but kind of."

Uh, yeah.

I have a suspicion it's candida. This whole thing started with thrush.

(I know what you're saying. "Ew! TMI!)

That's my suspicion. My fear is, CANCER. But that is always my fear. That and meningitis.

Any suspicious ache has me running for WebMD. Hey, I have good reason for this. My sister died of cancer.

Oh, I'm scared of heart attack too. And suffocation. I'm very attached to breathing for some reason.

So I'm taking Ativan as much as I am allowed to and waiting impatiently for this whole thing to be over.

But here is the funny part (and please note the title of this post, credit for which is due to my clever husband): both Lars and my brother are scheduled for colonoscopies in the next couple of weeks. Both had slightly concerning but probably benign symptoms.

What are the odds that all three of us have cancer of the digestive tract? I'm hoping very, very low. When this is all over and the three of us are joking about it I'll let you know.

Sunday, January 27, 2013

Early Morning Worries

I can't believe it's been two weeks since I've blogged. I've been sick as a dawg these two weeks, with bad reactions to some new meds. I mean, some really crappy and icky stuff. I won't oppress you with the details. It all culminated with a five-hour sojourn in the ER yesterday. All they could do for me was repeat the tests my PCP had already done and inform me it's a bad reaction to my meds.

Well, fuck you too.

And now I'm actually feeling physically better but was lying awake since 2 a.m. worrying about money, so I came downstairs to make a list of ways I can spend less this week and forever.

First thing I noticed was that some person in my immediate or extended family had set the thermostat to HOLD at 73 degrees Fahrenheit. !!!!! So who knows how long we've been keeping the downstairs toasty all night. I bet the paper whites have been loving it. On the other hand they've totally wilted over onto the lamp beside them, so maybe not.

The fish would have loved it but they all died.

So anyway, I made a few lists. The first one had money saving tips on it like:

  • Postpone Saskia's oral surgery (before you call DSS on me, this is not URGENT oral surgery. Yet. And Grandpa, who is a dentist, has a colleague who will do it for free if we go to NY. Good enough for me).
  • Apply for grant to pay for the 1K self-pay part of Benjy's upcoming neuropsychological evaluation. These are done every four years or so on kids like Ben and at the price of five thousand or your first born. If you are lucky enough to be insured, as we are, you get away with paying only a thousand out of pocket.
  • Eat only food we have in the house this week, even if gross. (Lars can eat the gross stuff, he doesn't care.) Stuff with freezer burn can surely be resuscitated. Google on how to do this.
  • When (edible) food we have in house runs out, purchase pasta, mac and cheese, and other toxic but cheap food items at Aldi or Market Basket, our two local cheapie stores (by "local" I mean 15 miles away. Nearby us you get to choose between pricey, pricier, and upper-crusty. I'm talking about you, Whole Foods).
  • Tell Bestie that I was in the throes of MADNESS when I agreed to put down a $300 deposit on a vacation house in VT to share with her and her son this for a week this summer. Make her inform the rental agent who is holding that week for us that we have changed our minds (because I am too embarrassed to do it).
  • Hold off on non-essential bills.
  • Keep heat at 67 during day. Wear sweaters. Scold whoever did that "hold" thing on the thermostat. (Who knew you could even do that?)
  • GET A JOB.******

***** Here is why I can't. Benjy is going down again. Eight weeks in the hospital this fall and winter, countless med changes, and he is slipping into deep depression again. Restless and seeking. Bankrupting us with his need for more and more video games. I say no, hold firm as long as I can. But when I am sick and exhausted as I was last night, and he is depressed and anxious and lonely and pacing around the house and lying pale and despondent in his darkened room there is nothing else I can do. If only I weren't sick, didn't have to attend, sometimes, to things other than Benjy (the tutoring, for example, that brings a little extra money into our house, my other child, who needs me too, even if she does not like to admit it) I could simply devote myself to keeping him busy and happy, keeping the emptiness at bay. But how the hell do you manage THAT with no spare money? There must be a way. I know some moms have figured it out. But my kid does not like the outdoors (except fishing, but in spite of what he told me yesterday evening when he begged me to take him, you cannot easily do that when it's ten degrees out). He does not want to read or watch DVDs. Tennis he likes but again, not so much when it's 10 degrees out.

So how can I POSSIBLY work when every year his seriously dysregulated periods grow longer and closer-set?

All I can do is hope for a tax refund this year, that my O essay comes out soon (payment upon publication), and that I sell a couple more, pronto. And just keep swimming.

Monday, January 14, 2013

Beauty and Disability

Raise your hand if you watched the Miss America pageant over the weekend. Go on, don't be embarrassed.

My hand is not raised, and I am sorry for it. If only I'd known what that pageant had in store I'd have been glued to the screen.

Now, I am not a fan of beauty pageants. They emphasize all the wrong things, suggesting that women are the sum of their physical parts. Don't be fooled by the "talent" piece. Yeah, some of those women are talented. In serious ways (although the more serious the pursuit -- classical piano, for example -- the less likely, in my limited viewing experience, that girl is to win). Some of them are crackerjack roller skaters or baton twirlers, too.

And some of them are not, shall we say, the brightest stars in the firmament.

Which brings me back to that emphasis on the wrong things. Because I firmly believe that how you look in a swimsuit is no measure of your value in this world. (You might have deduced from this statement that I do not look good in a swimsuit. If so, you would be right, but I stand by my assertion.) To me, Elena Kagan is beyond beautiful and cool. So is Elizabeth Warren. And my favorite college English prof, with her heavy coil of black hair and her imperfect figure and glasses -- and that brilliance that lit up the room.

But I digress. What this post really is, is a CELEBRATION of the Miss America pageant. Because this year it was all about disability. Well, okay, A LITTLE about disability.

One contestant had autism.

Another had Tourette's.

A third is having her breasts removed to protect her from cancer, just after the pageant.


Hey, this pageant was about ME. Autism, Tourette's, and surgical breastlessness. I SHOULD HAVE BEEN UP THERE. Those other ladies could have stayed at home, because I've got all three issues covered! (Okay, it's true I only have autism by proxy. Maybe Benjy could have competed with me.)

Joking aside, I think it's pretty cool that our cultural standards of beauty have expanded just a wee bit to accommodate certain forms of disability. I doubt we'll see a woman with cerebral palsy up there anytime soon, although I am quite certain there are some real beauties among them. Nor will we see plus-size women or women whose beauty shines more from within than without -- the beauty of wit, intelligence, warmth, and kindness.

Readers, change is slow and painful. Many of our cultural values seem to me misplaced, but I feel the teensiest flutter of hope that we may be evolving toward greater enlightenment.

I'll get back to you in about ten years and let you know if I was right.

Tuesday, January 8, 2013

5 Happy Words

That's what I have for you tonight: five crazy-happy, beautiful, heartbreakingly lovely words.


This hospitalization has lasted about six weeks. The longest ever. I've missed him at night. Hearing his congested breathing/snoring as I pass his room on my way to bed, or to the bathroom for my 3 a.m. pee. I've missed his random acts of hugginess. I've even missed his shoes and socks strewn all the hell over my house.


I will not miss driving to the hospital bright and early to fetch him for his school pass, then to school, then to the hospital for meetings, then home for his home pass, and back to the hospital for bed.

That dreadful triangulation.

He is coming home because his doctor has figured out the best cocktail of meds for him at this moment. that could change. It WILL change. I've been around the block enough to know that.

Not every day will be a success. He will not always be happy. Depression will rear its hateful head on occasion. So will anxiety. I hope the mania is gone for good -- or at least for a good, long time. The bizarre, Dali-esque images still persist. I imagine he still sees me in his mind's eye a broken and bent woman. He sees you that way, too. The people he conjures in his mind are all crooked -- physically, if not morally. Cars are bent, trees curved. that's just the way it's going to be, I guess. It makes me want to cry when I think too deeply about it, so I will just try to let it go.

It is the nature of blessings in our family's lives to be small ones. We celebrate them nonetheless. Two steps toward mental health, even if followed by a step back, are a triumph.

Benjy's homecoming is the biggest blessing of all.

Sunday, January 6, 2013

Why, Hello There!

Dear Readers, it HAS been a while! What, you think I was off reading romance novels and eating bon bons? (OK, if Ritter Sport bars count as bon bons, then guilty as charged.)

Never. I was off being SICK. Floored by the mother of all colds. Miserable. Stuffy. Sniffly, feverish. And coughing up a lung. Almost literally. The last few times I've had coughs like this I have broken ribs. Completely literally. So I am glugging down my sticky red codeine cough syrup every four hours and praying on behalf of my poor ribs.

Athena has so far been listening.

In other news, on the 3rd I reached the halfway point of my life if I live to be a centenarian. (Only time will tell.) In our family some of us reach 100+ and some of us don't reach 40.

And best of all: we are anticipating a mid-week discharge for our boy. More than a month after his fourth hospitalization in three years, Benjy will be coming home -- if we are lucky.

No more walking past his empty room when I get up at three a.m. to pee and steadying myself in his door jamb while my heart skips a beat. (No, he's not been abducted. He's not dead. He's safe in the hospital.)

No more driving here, there any everywhere (aka between the hospital, school, home, and the hospital).

No more pity-trips to Dunkin' Donuts and McDonald's. No more video game purchases because the poor thing is in the hospital. This mental illness situation is bankrupting us. I look forward to not having to buy him stuff because he's with me 24/7 and I can just hold him close and kiss his curly head.

I'm a little afraid to see what 2013 brings. It's been a long time since we've had an overall good year.

But Readers, I'm up for anything.