Christmas Lists

I know it's a federal offense to open other people's mail, but in the case of Santa letters from my children, I'm forced to make an exception. Instead of mailing them— shhhh– I've opened them. (Both written by Isaac, as Elias can only write a few stray letters at this point.) (I should add that Isaac wrote this with an unsharpened quill on parchment paper with a real bottle of ink. It's kind of tricky to decipher.)

This is Isaac's letter:  

Dear Satu

asufisticaed

camishreset

OQuomanpowrs(pstac)

if posublaroc

bril. cabonifris

grennowsISAAC

withAnumals 

Translation: Dear Santa, A sophisticated chemistry set. Aquaman powers (PS, and Tank) if possible. Rock drill. Carboniferous greenhouse, with animals. Isaac.

He made a major point to me to say that re the Aquaman powers he added, "If possible." I mean, to not be greedy and to be fair to Santa. Only later did he realize that he would need the room-sized water tank to live in also, and tucked that phrase above the line. I asked him about the carboniferous greenhouse and he explained that he wants a full-sized greenhouse (me: that you can walk into? him: of course!) full of carboniferous era plants and animals, many of which are of course extinct! This is a tall order for Santa. We are getting the chemistry set, although still struggling with which one and what kind. We got an Aquaman book and an action figure. (I suppose Santa could write an apology or explanation about this issue– no tank and no powers.) The rock drill is a little thing he saw in a catalog to drill small rocks into beads for jewelry and so is reasonably doable. But the greenhouse?? That will not fit in the sleigh, even if we could get extinct ancient life forms to fill it.

As for Elias…

FlYPowrsRmot

CunchrolFlyand

Spitreand

girOcoPtr

Elias

He simply wants, "Fly powers, a remote control fly and spider, and a gyrocopter." I actually think Elias has no idea what a gyrocopter is, nor do I, but it's something Isaac wants himself and prompted Elias to put that in. Now, the remote control spider is something we saw in a catalog and is easily done. Supposedly it can walk on walls! I haven't found a remote control fly, although there do seem to be some dragon flies out there, and perhaps that would do. But the fly powers (which are what– the ability to fly? See through compound eyes? Taste with your feet?) are going to be impossible.

The problem is that there's an internal inconsistency in the Santa story, and Isaac has decided to exploit it. If Santa is so magic that he can get presents to every child in the world in one night, why isn't he magic enough to provide these fantastic things?

Good question!!

I'll get back to you on that.  

 

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Forecast: Sun

It’s my birthday today—big 44. 

So. It’s a good time to take stock of the situation. Even a momentary glance at the overview of my life yields a pretty good picture. Good marriage, two beautiful children, lovely house and land, lots of good friends, freedom from cubicles and the dull grind of hours and paychecks.

On the flip side, my health has been a hassle and I have no career whatsoever. On the first topic, I can say the trend is steadily good. I have fewer and fewer days of impairment, more days of normalcy. I’m still trying to get into this research study on POTS and exercise, which would help a lot towards pushing me forward. It’s bogged down apparently in red tape at the Cleveland Clinic. Meanwhile, I’m trying to simply exercise more and push myself a little harder than I normally would. On Monday I ramped up my efforts a bit on the recumbent bike—rode for 45 minutes on a higher level. Not sure if it’s related but soon thereafter came down with a cold and had to cancel out of vestibular therapy on Wednesday. It’s a delicate balance of challenging myself but not too much.

Careerwise, it’s all been at a stand still for about a decade of pregnancy and child-rearing. But there’s a light at the end of the tunnel now—Elias will go to full-day school next fall and my scant two hours of non-kid time will expand to close to six! Now, there’s a patch of time in which a person can exercise, get groceries, put away the dishes, AND still have time left over to actually do some writing. That will be a game-changer for me and I’m excited about it.

Meanwhile, I had this idea come to me the other day, for a children’s book that I would write and my mom (sculptor and visual artist Doris Park) and my aunt Marilyn (calligrapher and animator Marilyn Zornado) would collaborate with me on. It’s an alphabet book that I would write (rhyming couplets about animals) and research, my mom would illustrate, and my aunt would hand-letter in her beautiful way. I pitched it to both of them and they are on board, so now I’m setting out on researching it and putting it together. It’s so fun to have something non-drudgery-related, non-kid-related, and non-dizziness-related to focus on. The fact that I have mental space for it says to me that really I’m getting well. A year ago I was purely in survival mode and had no hope of taking on an additional task of any kind. Now it seems plausible, even good!

It’s a recovery. It’s a slow, uneven recovery, but it IS happening. Sometimes change is hard to see up close, but at my last birthday I was barely functional, nearly falling often, lying down every possible minute. Elias was a year younger and that much harder to manage. Isaac was having a horrible school year and I could do little to help him cope better when I was having such a hard time myself. His miserable fighting—sometimes even physical fighting—against going to school, his crying and screaming and raising hell, was combined with my terrible, exhausting, despair-ridden, hopeless seeming ailment. I questioned the safety of driving the kids to school. I lied at the BMV when they asked if I had a fainting disorder. I bowed out of driving theclass to skiing. Every night, I had to stop cooking dinner and lie down, repeatedly. Sometimes I had to lie down immediately on the kitchen floor to avoid falling. There were times I couldn’t get warm, even when Ben made a roaring fire and I lay so close to it that my clothes were scorching. And although I had seen so many doctors, I still didn’t have a diagnosis or treatment that was helping with any of that. God—it’s only in retrospect thatit becomes obvious to me just how rough it was.

A long way from today… Isaac trotted into school happily, carrying a large corrugated sword Ben had made for him (one of a set for their production of the Nutcracker.) Elias assaulted my hind end as usual, but I like to think I handled it better today. I dropped them off, came home and cleaned out the car, put away the dishes, and trotted around the house like a normal person. My illness was not on my mind at all—because it’s low-grade enough now that I can ignore it most of the time. The sun is shining. I have another hour in the quiet house. And I think it’s going to be a good year. 

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Relentless booty issues

I honestly think it's getting worse. How? How could it get worse? Elias's (or should I say "my") booty problem is not going away. It's not.

Here's a partial list of the strategies I've employed so far. Let me know if you can think of any others. I'll try it. I have nothing to lose. 

  1. Yelling
  2. Ignoring
  3. time-outs and other consequences
  4. Reasoning, e.g. "bodies have private places, and you can't touch mommy butt…"
  5. Emotional inquiry, e.g. "are you touching mommy's butt because you love me? What are some other ways you can show that you love me?"
  6. Emotional inquiry part 2, e.g. "It's sort of hard to be a big boy sometimes, isn't it? Did you like being a cuddly baby and cuddling mommy all the time? But we can still cuddle now…" 
  7. Redirection: "here's a sponge, will you help clean the kitchen?" (this one works longer and better than any other, but still wears off way too soon)
  8. Reverse psychology: "please touch my butt!" (did not have the desired effect, but maybe I didn't give it enough time seeing as I did not enjoy the ensuing fondling extravaganza.)
  9. Constantly slapping my hand behind my fanny as if slapping away a swarm of hornets, so as to smack the little hands that come into range. Difficult to chop shallots and such while doing this also.
  10. Donkey kicks behind me at random, to keep him off his guard.
  11. Having Daddy have a man-to-man talk about ladies and their parts.
  12. Begging.
  13. Outbursts of blind rage.

No. None of this works. My kitchen experience is like this: "Okay, bring sauce to a light simmer while stirring const– GET YOUR HANDS OFF ME–antly until smooth;" or "Let me see… where is my whisk… GET YOUR FACE OUT OF MY BUTT!" etc.

He has several maneuvers now– there's what I call "bongo drums," there's the horrible face-centric "motor boat" (I think face is worse than hands) and the most dreaded "pervert on the subway" (that's when he reaches UNDER and tickles!).

He also gloms onto me when I walk by. Like trying to accomplish something and he's standing on a stool, then as I walk by him his arms dart out like tentacles and entangle me, preventing my progress and making me feel thwarted and incredibly frustrated. I was struggling to get free from his grasp recently and he goes, in this weird kind of sleazy voice, "Don't fight the love…" (Apparently he learned this from Sponge Bob!) 

My chestal regions, too, are not spared. When dressing him I sound like this, "Okay, one arm goes in the sleeve– DON'T TOUCH MY BREASTS!– and then the other arm — DON'T TOUCH MY BREASTS!– okay, now head through there– LEAVE MY BREASTS ALONE!!" etc.

It's very jarring.

I think what would be best is to somehow wear a scat-mat (for deterring cats) draped around me as a sort of suit of armor. Or just get Ben to make me a specially designed box suit. Or what about , what I really wish for, is some sort of thing like when the wicked witch on Wizard of Oz attempts to get the ruby slippers and lightning bolts come out and electrocute her hands. Wouldn't that be great, like some sort of automatic forcefield?

What does he do or say after all this lecturing? He listens earnestly and then four minutes later he's back at it. It's almost like he goes into a trace. He drools, his eyes roll up in his head, he sings his own made-up songs, and his hands go wild– boooty–booooty-boooooooty. He is somehow not in control of this. It's like an addiction. Does he need to get in touch with his higher power? 

It has to be a phase, right? At some point, if nothing else, he'll grow and so my petoot won't be right at the wrong height anymore. (We definitely did NOT have this level of problem with Isaac.)

For a moment a few days ago it seemed that we had finally gotten through to him. I was walking up the stairs and he was, of course, as always, directly behind me. He said wistfully, "Mommy, I love your booty but I'm not going to touch it.!" Incredible self-control. I was all, "GOOD BOY! GOOD BOY!" like crazy, and hugged and kissed him no end. But soon it was all forgotten and he was up to his old tricks again.  It seems that the bottom line, so to speak, is that my heiny is just plain irresistible. That is, he is literally UNABLE to resist it. Should I be flattered? Does he have a bright future in proctology? I don't know! But this is getting really tiresome. 

 

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Bootylicious

I am no Beyonce'– http://www.veoh.com/browse/videos/category/music/watch/v6302541T8YtNTHX . And yet my current bootyliciousness (at least in the view of one 3-foot-tall fan) is becoming a real nuisance. 

My booty, as is were, is vast, squishy and irresistible, when viewed from Elias's eye level. He just can't keep his little hands off it. The result is that I spend my days trying to do ordinary housework with a small child always on my heels and sexually harrassing me. Well, "just say no" you say. Sure. I've said no– four hundred million times. I've screamed no. I've given time outs. I've lost my cool completely. I've caused the little one to sob and cry in shock and anguish. And then, four minutes later, he's back at it again. He follows me. He buries his face in my butt. He pats my butt. He pokes my butt with whatever is in his hands at the time. He has a wonderful move where he clasps his hands in the back pocket of my jeans, then lifts his feet from the floor and swings. Wherever I go he's one inch behind me, so that when I turn around (as I often do when, say, attempting to put away the dishes) he's directly underfoot.

Yesterday I was wishing for a taser, or at least an electric dog training collar.

I know this is all very flattering– a reflection of total love. It's even mutual– I'm enraptured in love with him too. But for god's sakes!! let me put away the dishes!

Yesterday I was almost in tears myself with the hopelessness of it. I was so tired, having so much trouble standing up as it was, and this little person was making it worse. We had a ridiculous day lined up– Elias's belated b-day celebration at school, gymnastics after school, an school open house right after that, with no time for dinner. The only window of down time was between about noon and two p.m., during which I was trying to clean. The house was a complete mess (still is, for that matter), as little destructor has been going full tilt for days, while Isaac was sick in bed and I was feeling pretty bad myself, needing and wanting to rest. But I was trying as hard as I could to restore some semblance of order, and my little booty fan club was hindering me at every step of the way, hanging from my pockets. Every time I bent over to pick something up, which I had to do constantly, he took the opportunity to pat my soft parts. (Oh yes, the booty isn't the only soft part that he adores. Other soft irresistibly fleshy parts fall prey too– especially when my hands are full and I don't have a quick defense.) 

[Can I add that as I write this they are both climbing on me, and kissing me, and trying to get in my lap? Elias IS in my lap and Isaac, nearly 8, can't fit.]

[Insert interlude here where I take them upstairs and get them both dressed– picture trying to dress a bag of squirrels– and bring them back down and get them dry cereal, little bowls of salt, and sippy cups of milk, per their specific requests. Now they are watching the Clone Wars and I have a moment again.]

[I am reminded of Isaac's latest tactic– to remind me that I was the one who wanted to have kids! The other day in the grocery store we were having an especially trying situation surrounding candy or no candy. I was strictly refusing. The kids were melting down. And Isaac said, lawyer-like, "YOU'RE the one who signed up for this! You're the one who chose to have us!" How can you respond to that? Yes, of course I wanted to have you, you little so-and-so, but that doesn't mean I wanted every trip to the store to be a LIVING HELL.]

It was too much as it was, but I knew that coming home at 9 pm to total chaos wasn't going to help and so I was trying my hardest to get things into some semblance of shape. I did get the dishes unloaded and the pile in the sink all cleaned up, with my little friend attached to my butt all the while. But then I had to lie down. There was no option. At times like these I really remember that I do have POTS.

I read yesterday some more about Greg Page, the Yellow Wiggle, who had to leave his career due to orthostatic hypotension, which is part of my diagnosis too. Officially I have "orthostatic hypotension and late POTS. I found this article, which opens, "The longish walk to find the cafe leaves him short of breath. A wait in a coffee queue is uncomfortable. Even just getting around the city now is more tiring than years of performing in two high-energy shows a day, six days as week, as the Yellow Wiggle." 

The once youthful, bouncy, fit Greg walks with a cane, "That's one reason I wanted to have a walking stick, apart from the physical support it gave me," he says. "It made me feel that at least people would realise something was wrong and I wasn't just wandering around shopping centres as an aimless drunk. It was embarrassing. To go from doing two shows a day, an hour and twenty minutes each show on stage in the US, to getting round with a walking stick in a matter of a month was a real shock."

Yes– I understand, Greg! I feel your pain. There's this POTS blog called "But you don't look sick," which is as apt a title as any. We with POTS don't look sick. We just have to lie down– like right now.

I did get some promising news regarding the POTS study. My neuro apparently changed his mind or found out more about what it would entail, and it seems, that he has decided to help me do it. He wrote an e-mail to the study lady, and asked whether I would need to quit the Cymbalta to be in it. She wrote back that I would NOT. Yes! And then sent him all the forms and whatnot that it entails. I have to pass (or fail?) this ten-minute POTS test, in which my heartrate has to increase at least 30 bpm when I stand up for ten minutes. I started worrying that I wouldn't pass it for some reason, and then realized — hey– if I don't pass it then I don't have POTS anymore so it's win-win. In any case, this is all still pending, as I'm awaiting a reply from the neuro one way or the other. They study lady did say that they will NOT release the protocol to me without a dr involved. Also we can't share it. We have to sign something saying that we won't (the doctor and I both have to sign). Hence the idea of doing it on my own is not an option. I hold out hope that this will work out and soon I'll be in the office, standing there for ten minutes and feeling like crud in doing so. And that the information will be in hand sometime soon and I'll be able to proceed accordingly. 

Today the kids are off school due to a teachers' conference. [And again screaming and climbing on me!] I have to bring the boys to vestibular therapy with me, in which I will bribe them with the promise of smoothies if they adhere to the rules (no running, no fighting, no climbing on the equipment) for the full hour and fifteen minutes. It's going to be a challenge, for all of us!  

 

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another obstacle on the obstacle course

Okay, so I spoke to Ivy yesterday, my neuro's assistant. I told her all about the study, and the e-mail that Vince had sent to the dr for me, and how awesome it would all be. She put me on hold for a few minutes and then came back and said that unfortunately my doctor can't participate in the study of any other hospital, no matter how great it might me. So, no. The answer is no. 

I wrote the lady in Texas about what my options might be now. The ones I could think of are : a) maybe get the protocol without actually participating in the study, just doing it on my own; or b) maybe Vince could be the liaison instead? ; or c) should I try to scare up another dr., like my primary care person? (she has not been treating me for POTS in any way, but still she's an MD and might be up for helping.) So we'll see what the Texas lady suggests at this point.

Heavy sigh.

I feel like everywhere I turn there's another barrier to progress. It's a downer. But even with just the overview they included in the medical article, I think I could roughly piece it together on my own or with a trainer. Much less easy or clear, and reinventing the wheel, but as a last resort I think it would be okay. If I were to go that route, I would not need to stop the Cymbalta anytime soon, and so in that respect it would be easier. 

But still. Why are people like this? Apparently it's a Cleveland Clinic policy, but it really seems counter to scientific progress. WHy impede learning? It strikes me as greedy– as if if a Clinic dr helps another one out, then all the glory will go to another institution instead of the Clinic. But honestly, the Clinic is huge and has plenty of glory. Why hoard it? 

Oh well.  

I have more important things to think about. Isaac's birthday and Halloween are fast approaching. There are parties to plan and cakes to bake and goodie bags to assemble and costumes to design. Elias is home with a nasty cough today. I'm going to make some serious chicken soup, and continue my canning project with applesauce (we picked apples on Saturday). The kids need to be shuttled from school to horseback riding, Taekwondo, and gymnastics. Busy, busy.

The good news is that I am well enough now to do these things almost like a normal person, and so perhaps I should just bask in that for the time being.  

 

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The Grinch Syndrome

Let me begin by stating categorically that I like Christmas. I have no plans to steal anyone's presents. I love the Whos of Whoville. It's just that my heart may be two sizes too small. 

You see, there is this doctor in Texas, Dr. Benjamin Levine, to be exact, who is a cardiologist researching for NASA. He was looking for ways to help astronauts cope with long periods of time away from gravity, and how to keep them strong during long times in space, and how to help them function when they return to our home planet. Then he noticed that people like me– people with POTS, people who don't DO gravity all that well– have a lot in common with these astronauts. So he started doing some serious research on POTS and how to treat it, bless him! What he came up with is an exercise protocol, three months long, mostly seated (recumbent bike, rowing, etc) so gravity is less of an issue. He tested these POTS subjects 9 ways to Sunday, and discovered that they all had something in common: small hearts. Each beat of the smaller heart moves less blood, the heart has to beat harder and faster to accomplish normal things. Also that the blood volume is low in these subjects, so now you have a small heart trying to move way less blood. Clearly the result is not enough oxygen getting to the brain, which leads to brain fog and tiredness, dizziness and near-syncope (almost fainting, which I like to call a sudden totally voluntary decision to lie down on the nearest flat surface.)

Best of all he learned that these small hearts could actually grow through intense exercise and that blood volume could be increased through exercise and truly crazy quantities of salt and water (8 grams, 4 liters, a day!!)

So he published this big study this summer, which I found out about through the wonders of the blogosphere, and ultimately forked over $15.00 to read for myself. (No, the public library did not have it…) The best part of the thing was at the end he said that almost half of the test subjects– ready– are YOU sitting down?– NO LONGER HAD POTS. Yes, you could tilt-table them even, and they would not pass out. Their POTS was GONE. Their hearts were normal sized again. Their blood volume, normal. Their quality of life– normal!!

That got me pretty excited, and I wrote him an e-mail saying hey, can I get a piece of this action? (Raising my hand ever higher and going, "me! me! take me!") And his asst. wrote me back and said that indeed they are running an even bigger study now, trying to set up a worldwide POTS database, and that I could be in the study too if I wanted. This would entail getting my doctor on board to be the liaison, and some other small technicalities. Then they would give me the exercise protocol, which I would commit to doing to the letter for three months, and then we'd see how it worked.

Yesterday (I just got the reply on Thursday night) I called my neuro to talk about it, and was only able to leave a message, and so this is still pending. I would think that he would be all for it, as he is one of the "exercise helps" camp and would love to have some proof to back up this instinct. The anti-exercise forces are still quite powerful in the world of POTS research, I think, and so they need data to support the new view.

[Regular-person article can be found here:  http://www.nsbri.org/newsflash/indivArticle.asp?id=383&articleID=57; abstract of medical-person article can be found here: http://content.onlinejacc.org/cgi/content/short/55/25/2858; one lady who actually tried it here: http://www.potsrecovery.com/]

Just last week I had a talk with Vince about my progress and he said that I should try… try… to go to the Wellness Center and work out once or twice a week, even for 20-25 minutes, just to see what happens. Now you may recall that in May, when I started back in vestibular therapy, I attempted to ride the recumbent bike for 4 minutes with two people standing there with clipboards watching me. Yesterday, I rode it for 40 minutes! The lowest setting, but still…

So I'm hoping to get this all sorted out and get the exercise plan in hand sometime soon, and launch this newest and most exciting phase of my recovery from this stupid illness.

I read in the New Yorker that ultra-cool guy John Lurie was diagnosed with POTS and dismissed it out of hand, because the name was too lame. Well, I'm not sure he'd like "The Grinch Syndrome" any better, but since all the subjects have small hearts, that's what those silly NASA-NIH researchers are proposing we call it! I propose that we call it "Astronaut Sickness" as being way cooler than either. I simply have a body that feels that it's been living on the international space station for the past year. 

Also I learned that "Yellow WIggle" Greg was felled by POTS himself, and had to pass the yellow shirt off to new Wiggle Sam for this very reason. In a later photos for their band (children's music sensation The Wiggles) he is often seen giving the thumbs up while reclining on couches. Dude can't stand up without fainting. … 

Now, on the flip side, also in the blogosphere are several nay-sayers about the study. They say the sample was way too small to mean anything, and that one of the conclusions (that POTS is caused by deconditioning) is totally offensive and wrong, and then they list their fitness stats. "I was running six miles a day when this hit," that type of thing. Also over the last few incredibly hectic weeks, I talked to a cousin of ours who is surely the most fit person I've ever met in real life. He is a rower in the extreme sense and is in perfect shape, a strict vegetarian and uncanny athlete– who thinks he has POTS. So, that aspect of it rings false. And it does worry me that rowing is effectively promised as the cure for something that this guy who rows like crazy has also. My hope is that he doesn't actually have it- he hasn't been tilted and has only been diagnosed by an ordinary doctor, so it's not totally sure.  

The other thing is the medication factor. They make people quit all heart-rate altering meds before starting the study. So… my question, and this is still unknown, is whether Cymbalta is "heart-rate altering" or not. If I have to stop it, and my neuro gives that idea the green light, I would surely try it. Scary– I have many fears about that idea. the Cymbalta has been a huge benefit to me, and when I think of the darkness and despair I was in in January, and how I had to lie down several times in the course of making dinner, I can't believe how much it's helped. But long-term– looking ahead some months or a year, I would surely rather be way more fit and be off the drug, and this study seems like a ticket to both goals.

So… we'll see. The next step is getting the doctor to agree to help. I bet he will, but until I know for sure I can only wait and see. Next week I'll find out and we'll take it from there. Maybe I'll be in better shape in time for Christmas– strong enough to carve the roast beast?  

 

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Sweet, sweet silence

For two days and three nights I've been floating around on fluffy white clouds of pure silence. When your normal reality is one of constant clattering noise, gleeful or angry screaming, flying projectiles, and general chaos, this concept of peace and quiet is a rare gem. Ben took the boys out to the East Coast to visit his parents (they're vacationing in Connecticut) and sisters and all the nieces and nephews.

I bowed out, mentioning dizziness and an unrelenting travel schedule this summer. Also, I'm traveling this coming weekend– I'm going to the west coast! My mother and her sister Marilyn got married 11 years ago on 9/11/99. Then the real 9/11 came along and messed their anniversary up big time. This year, their 11th anniversary, Marilyn decided to reclaim the date. She's having a big party at a deconsecrated church that they own, and lots of my family are heading out there to Portland to celebrate. It's going to be hard traveling for me– the west coast is quite far away, I've noticed, and the flights are not direct and at funky times. Thus it's all the better that I've been utterly and completely resting the last couple days, and I still have today (it's only 9 a.m.) and part of tomorrow too!

So, what do I do when I'm a free woman? Turns out it's mostly read, waste time on the internet, and watch Mad Men, season 1, in a DVD marathon. I eat when I'm hungry and drink when I'm dry. Of course, I had lots of grandiose plans about things I would accomplish, sorting closet and thinning piles of clutter, pulling weeds and tidying up the landscaping, cleaning out the car and catching up on the laundry. But I've done none of that. Nada. Nothing. I walk past it and think, "maybe later," and then sink again into some soft couch or bed, pull up the covers and return to resting. I have a slight head cold, too, which makes it almost acceptable.

The other reality is that I'm still rather dizzy. On Thursday night, due to excessive fatigue, I was out with Ben and had a seriously hard time walking. I needed to be escorted, ladylike, from place to place in the bookstore. This enfeeblement grates on me so! I went to vestibular therapy on Friday and told them all my troubles. They expressed concern and sympathy and did what they could to help. Vince has notified the neurologist that I'm in need of a check-up, and his office called me, and that is pending. I haven't been in to see him since May and as always a lot has changed since then.

But perhaps the Mad Men treatment will work wonders. I just love being horizontal and warm, preferably with a sleeping cat on my feet (as now). I'm also reading a self-help book for the first time since the late 80s. It's very retro I know– I'm reading Women Food and God, which Oprah recommended, and Annie LaMott blurbed, and so it caught my eye. Honestly it's a great book and has been wonderful to have time to read. I'm also reading the stunning Volokhonsky/Pevear translation of War and Peace. My door stop book got lost somehow, so I'm reading it on my Kindle, which has the advantage of not weighing 4 tons. What I have to say about this is, if you tried to read it or were forced to read it years ago in school, you were dealing with a horrible translation. That makes a huge difference. This one is so much better. At the beginning of the introduction, there's a quote from Isaac Bashevis Singer: "If life could write itself, it would write like Tolstoy." When people hear "War and Peace" they think of words like "LONG, difficult, tedious" when indeed the better descriptions would be "gripping, vibrant, page-turner." (In the Kindle age, when there are no pages, will we learn to say "it was a real scroller"?) This is clearly a long joyous project– the hard-copy book was 1200 pages– if and when I finish it, I will have a Russian-themed dinner party to celebrate.

Even lying here in bed I'm still somewhat dizzy. But what's lovely now is that instead of having to somehow get myself up and make myself function, I can just rest and not fight it. This is the very definition of luxury.  

 

 

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DIzzy Again #$)#(*$

Insert your favorite expletives here. I'm cussin' a blue streak this morning because reality has returned. The honeymoon of June and July is over. I'm dizzy again. 

I can't just chalk it up to a bad day or even week. It's a bad … stretch. It's bad again. Day after day of struggling again. Curling up on the couch again. Stumbling when I walk, clutching the grocery cart in a death grip, canceling the day and going back to bed BAD. I really thought I had it licked. But apparently no.

Why? Here are some ideas. Could be one or all or some of these things. 

 

  • I think the Cymbalta is "wearing off" so to speak. I had a rough transition to 40 mg., then June and July hit the perfect cruising altitude. Not dizzy and generally quite cheerful, unflappable, and all around coping with life quite well. Then around early August it all started to crumble… a bad turkey burger at a pub in Washington DC on our way home (laced with MSG I think) kicked it off. I walked into the restaurant fine, got dizzy a few bites into it. (Some kind of horrible faux-spice mix, I think). Set it down and stopped as everything started tipping from side to side. Waited for everyone else to finish and then had to submit to assistance, bodily helped out the door, down the stairs, back to the hotel. That was sort of the opening salvo of this round… saying, "YES, you do have to be psycho careful about what you eat and NO, you are not out of the woods." Also, my chipper-ness is clearly wearing off. I'm grumpy again, and this is another sign that I've acclimated to the dose of happy pills. 
  • Vestibular therapy.  They've been upping the ante on several levels. The fitness end of it, I'm handling well. I'm up to 22 mins of cardio (from 1 minute in May), and can leg press 100 lbs., and so on. I don't think that's the problem. The problem is the "soft tissue" element they've introduced in recent weeks. They just gently massage my neck and shoulders, while I lie there with a hand towel over my eyes so the lights don't bother me. It feels rather nice and not at all a problem– except that then I'm dizzy all the rest of the day and also the next! Vince insists that this is good for me at this point, but I don't enjoy it. 
  • Food. I've gotten sloppy about the rules, chafed under the vice-like control of the migraine diet. On Monday I even ate some Chunky Monkey ice cream, loved!! Loved it! However it's made of a) bananas, b) walnuts, and c) chocolate chunks, ALL of which are no-nos. That was Monday, and I'm sure it's out of my system by now (Saturday), but as you can see, I'm not being as good as I once was. That could be making this worse. 
  • Support hose. I took them off en route to Pawleys and have been loathe to put them back on. I couldn't find them yesterday morning when I was going to vestibular therapy and so went without. Making me dizzy? Probably. 

 

SO basically what all this says to me is that I can't rest on my laurels and declare victory. Instead I have to actually stick to the program in every way. I have to watch the diet like a hawk. I have to wear the support hose and eat the salt galore. I have to… probably.. up the Cymbalta again. Vince thinks so, too, but I'll talk to the dr on Monday about it and see what he says. I'm not happy about it though– will I just have to keep going up and up indefinitely? Will I go through another month plus of horrible headaches and side effects while I adjust again? Is this never ending? And remember, the higher I climb up the dosage ladder, the longer and harder it is to get back down and back OFF the drug, down to NONE, which I hope to do someday. 

#)(*%*)(#*$

Words drifting through my head from something I read one time… "if it's POTS caused by a virus, the recovery time is usually 2 to 5 years…."

Again, I cuss.

Okay, Other news:

The boys have just finished their first week of school. Crazy early, I know. Isaac is now a big, big second grader, and Elias is in his second year of preschool. (It's a three-year plan… next year he'll do full-day Kindergarten with the same teacher.) Isaac seems to be doing strangely and wonderfully well so far, knock on wood. He's been cheerful and cooperative, and apparently at school has not been in trouble in any way so far. One thing that really works for him about this school (one of many) is that he is also in a three-year plan, and so doesn't have to deal with another transition. He knows the teacher, the room, the kids. Everything is the same, except that now the bigger kids have gone across the hall to upper elementary (4-6th grade) and some smaller kids have come up and joined his class. So Isaac is now a big kid, and can lead and guide the younger ones. He told me the other day that this one boy was actually standing on his head– right in the class room! And Isaac was there to tell him to stop it. I think that he will thrive well in this leadership role. He's also been allowed to do his work and research with his little friend Jens (they were working on DNA for several days, and now have moved on to South America) without being separated. If they can work well together and actually get something done and not tackle each other nor roll on the floor, all will be well in school land.

Elias, meanwhile, is incredibly happy to be back. He's making lots of "maps," which he carries around all day. And he can write several letters, sort of, especially his signature multi-legged E's. The other day when we were driving home, he mentioned that he had an assigned seat at the playground, which is something like a time-out. The story unfolded in haphazard fashion, and I never did quite get the sequence sorted out, but it went something like this:

Elias: I got a 'signed seat at the playground.

Me:  You did? Why?

Elias: I was holding Ryan down, so he couldn't get away.

Me: Oh? Why were you holding Ryan down? Did he do something?

Elias: He couldn't get away and he couldn't get up because I was on top of him.

Me: But, I mean, was he bothering you? Why did you hold him down?

Elias: He punched my nose!

Me: Oh! He punched your nose, so you held him down? [This was shaping into quite a tussle, with all the players aged 3…]

Elias: No, he punched my nose near the end. And he called Hank…

Me: Did he call Hank a bad name, or something? 

Elias: No, he just said, "Hank!"

Me: You mean he just said, "hey Hank!" like that?

Elias: No, he was under me and he called, "Hank! Help! Help!" like that. Then Hank come to help him get away.

Me: Did Hank get an assigned seat, too.

Elias: Yep. Hank, and Ryan, and I all got 'signed seats.

Does seem like it was quite a fray, with three little boys getting into it. Coincidentally, Hank and Ryan are Elias's best friends, and the only guests he wants for his birthday party coming up in a few weeks. I guess it was lucky that in this case Elias didn't misuse his TaeKwonDo skills. He and ISaac are going to the big real TKD school now and doing some pretty fancy stuff. Isaac may even fight in a tournament soon, and he has all this awesome protective gear to spar.

Also I just got them both into gymnastics, which is like heaven on earth to them. You mean, I'm SUPPOSED to climb on things, turn upside down and jump off??? This wonderful place has boys-only classes to combat the girl-domination problem. Isaac already has done a hand stand on the even parallel bars! Also, there they have trampolines built into the floors, a giant padded room, and basically a swimming pool filled with 1-foot-square foam cubes that you can sort of swim in. This they actually throw the kids into, who fly screaming through the air, and all is right with the world. 

Elias, I think, I will be able to get going on Suzuki violin this year, finally.

Dizziness willing…  

 

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Exile

We had a lovely week at Pawleys Island, SC, as we usually do. This year, we agreed on the way home, was a lot better than last year, when I was so impaired that I felt like an invalid much of the time, and the year before, when Ben had a major work issue hanging over him. It seemed easier to keep track of the kids, too, and at 3 and a half, Elias is getting more independent and easier to handle. It felt like we each got turns relaxing one way or the other. I read about 300 pages of the new translation of War and Peace, which was pure bliss. Ben knocked off a running book and a collection of wry essays about modern fatherhood. The kids played in the sand and surf. Ben caught a jelly fish in a bucket. I found an enormous live conch, with the creature still at home inside it. My happiest moments, I think, were when I looked out over my book and saw one boy playing happily in the sand, and one boy bobbing happily in the waves. 

 

All this makes what happened after we got home all the harder to accept: we got an e-mail from the owner of the inn saying that our reservation "will not be honored" next year. There have been complaints about us as parents and about the boys' behavior. In short, we've been exiled. 

 

The news came on Tuesday, and honestly I could not have been more shocked. Why would anyone not like us?? We're nice! Why would they say we're bad parents? We're good parents! My next reaction was utter crushing shame: we're horrible parents and we've raised two monsters. Where did we go wrong?? My next reaction was bitterness: we didn't like it there too well anyway, those rigid mealtimes and gruff servers. Then came anger: why couldn't they have at least talked to us about it while we were there? I mean, why… we've been going there every summer for the last five years, Ben went to Pawleys Island as a child (although to a different inn that no longer exists) and Ben's mother went to this very inn when she was a child. Elias took his first steps there. We've made friends there, and so have the kids. Given all that history, couldn't they have a least talked to us a little bit? GIven us some sort of head's up? Instead of just the sudden axe? 

 

It was much like being suddenly broken up with when you thought the relationship was going great. 

 

Since the initial blow, I've been reviewing the week in painful detail, trying to figure out what anyone could've complained about. At first I thought, "They were in the ocean the whole time, what on earth could they possibly have done?" And also it's kids' week! All the kids roam around freely doing kid things. What did they do that was different from any of the other kids? I remembered the time I stopped Isaac from squirting the hose too much, and when he started right up again, how Ben dragged him upstairs for a lecture and a time-out. Or the many times we sat the kids down and reviewed the rules, especially the one about no running.  It seemed to me that we were on top of things, it really did. We handed the kids off  to each other and took turns having kid-free time. 

 

But on closer inspection a few things came to mind. I knew that one lady was really mad at Isaac, when he stepped on the shell of a crab she had found. I arrived about a minute after it happened, and didn't see the incident itself, but I could see that the lady was madder than a wet hen about it. Her allegation was that Isaac had seen her beautiful shell and stepped on it intentionally to destroy it. His claim was that he thought it was a leaf. My gut feeling was that if this shell was so precious to this woman, she shouldn't have left this sand-colored object, hello, IN THE SAND right where people were walking in any case. It seemed pretty dumb to me. And knowing Isaac as I do, I think that if he had realized it was a nice in tact crab shell, his reaction would not be to destroy it, but to investigate it closely, possibly with a magnifying glass. So given all this, I frankly believed Isaac's story about the leaf. But since the lady was so upset, I did make him apologize to her, and I apologized to her myself. I'm not sure what else I could've done. Possibly she complained about it, though. She seemed pretty pissed. 

 

And then there was the incident of the lost Pokemon game cartridge. A teenage girl there had very kindly been letting Isaac use her little hand-held video game, a Nintendo DS, which has been Isaac's greatest desire for about three years. Indeed, when not in the ocean, Isaac was most often seen on the couch in the living room, curled up with his little girlfriend (a sweet girl of 5) and playing DS. I worried that he was using the batteries up and asked if we could buy some more, but was assured that it was okay, it charged with a plug-in. So we were eating dinner when the girl, no longer generous and instead in one of those dramatic teenage rages, came over and demanded to know where her Pokemon cartridge had gone. This little postage-stamp-sized game fits into the machine like a card in a digital camera, and apparently Isaac had lost it. A thorough search of all sort of places ensued, with Ben and I fully engaged in the problem. I offered to replace it immediately if it was truly lost. But after a half hour or so, we did find it. Isaac had two pairs of shorts that were identical, and after swimming had put on a different pair, and the game was in the pocket of the other one. But the girl was pretty angry about it, and possibly her parents complained. 

 

One possible thought is that that particular time he was playing DS, Isaac didn't have permission to play it. He might have picked it up in the living room. Or… what if he actually went into her room and took it?! If that's what happened, I could see that that's totally unacceptable. He denies this completely, and I really don't know. I just sense that her anger seemed a little overblown, given the facts as I knew them. 

 

Then there's the fort-building incident. Since the e-mail contained no detail as to the nature of the crime (just that our children were not properly supervised), I'm not sure whether I'm being paranoid, or whether this actually was one of the issues. My sense is that it was. One evening Ben and I were down on the beach with both boys– pure heaven. Cool breezes and lapping waves, and that beautiful soft light after the sun has set but before it's at all dark. After a while Isaac went back up to the house, and Elias and Ben and I stayed down on the beach a bit more. When I came up, Isaac and his little girlfriend had made a fort of couch cushions in the living room. I wasn't sure about the protocol on this, but since no one seemed to be using the room at the moment, I didn't see the harm in it. There was just sort of a general festive atmosphere, some people drinking beer on the porch, someone playing guitar someplace, other people having a snack or doing a puzzle, what have you. So I let them play the fort of couch cushions for a while. Then it was time for bed and we put all the cushions and pillows back where they belonged. Was that a problem? Did someone complain about that? Maybe someone passing through at that time wanted to sit there, and couldn't, and was miffed? 

 

I don't know. I could go on like this, with these possibly petty/possibly serious items.  Of course, I'm also aware that the gist of the complaint was that we were not on the case with supervising the kids. These are a few things that I know about, but what if they were running amok and doing all sorts of things we don't know about? I can't imagine when that would've been, because I feel that we knew what they were up to at least most of the time, but it's possible. 

 

What I didn't realize is that we might have actually been on probation from last year. Indeed, last year at Pawleys was rough on all of us, because I was so sick there and Elias was that much littler and harder to keep track of. I remember some rough times with managing both the kids, and indeed Isaac was not helpful. He actually rather cruelly exploited my illness and took advantage of the fact that I couldn't bodily restrain him, or even catch him if he didn't want to be caught. That meant I had to rely on Ben, and there was Elias to manage, and the place kind of sprawls out– the marsh, the road, the inn itself with all its rooms and passageways, then the porch, deck, beach. If one parent was far away or impossible to find, the other one might be in a difficult position for a while. I remember one kind mom helping me catch Isaac so that I could drag him down to Ben, who was on the beach, and Isaac actually purposely yanking my arm in order to make me dizzy! For pure spite, hatred and malice! I felt an acute level of rage and betrayal at that moment, and admonished Isaac thoroughly through clenched teeth. Possibly this scene, and others like it, cast a pall over our family's reputation at the inn. 

 

Anyway, what happened was that the inn "lost" our reservation for this year, and we lost our usual room. We did get into another less-nice room for the same week, but were disappointed about it and felt mildly rebuffed as it was. Then we got this envelope on our dresser when we arrived this year, with the rules in it (they are posted all over the place, no running, etc.), and the handwritten words, 'Please read carefully." Which we did! We sat down and read them and discussed them with the kids thoroughly. Then we did our level best to enforce them, too. But not good enough. In retrospect I think that all was a forewarning of what was to come.  

 

I feel a bit peeved that they took the passive-aggressive route of losing our reservation and hoping we would disappear, rather than just telling us directly that they had some concerns about our parenting and the way the kids were behaving. But at the same time, I do think there were some things we should've done differently. This whole thing has caused us to reflect on our parenting strengths and weaknesses, and to find that we really do need to get better control of the little varmints. We can also see that this whole year of being sick has taken a toll on our family in so many ways. In survival mode and horizontal so much of the time, there's no question that I tolerated many things that I would not have had I been healthy and ambulatory instead. I think the screen time is another real issue– Isaac is stationary while watching something, and for me that has been half the battle. If he's sitting still, then there's only Elias left to manage. But I'm sure that too much tv/Wii has had a bad effect on his behavior. And let's face it, discipline has never been my strong suit in the best of times. We're trying to turn this whole experience into something of a wake-up call. Yes, we've lost control of the situation, and we need to regain it. It's sort of like the process I'm in to physically rebuild my body. We need to rebuild the family structure here and get the reins again. I bought a discipline book and Ben bought a different one, and we're just generally trying to run a tighter ship around here now. 

 

So where does that leave us? We haven't broken the news to Isaac about not going back to Pawleys again. I think he'll be okay with not seeing the crabs and jelly fish again– he was really getting pretty anxious about them towards the end of the week– but there will be some special friends he will surely miss. I don't know how to approach it with him. I'm not sure whether this is a teachable moment– yes, your actions have consequences– or if it's just too extreme a consequence. It would be so easy for him to take this all to heart too much, take away the idea that he's such a bad boy we can never go back there again. It's been shocking and harsh even to us adults. I'm afraid that if he gets wind of it at all, he'll put it all on himself in a harmful way. I think he's too young to cope with all the nuances of this situation– and to understand that the problem is defined not as HIM– he's only seven, after all–  but as our lack of management of him. Maybe the best way to think about this, for my own mental health anyway, is that it turns out "we were not a good fit" for that place. 

 

So, onward. It's been quite painful to be rejected like this, but we'll get over it. There's a big world out there, and lots of wonderful vacation things to do. Maybe we should go white water rafting, or skiing in Banff, or hiking in Alaska, or to Paris or London or Seville. I hear there's a volcano in Hawaii that's been erupting for years, and also I've always wanted to see the Great Barrier Reef.  Maybe we should walk Hadrian's Wall in the UK, or go birding in Coast Rica…   It will be a fun project over the winter to dream and plan something new to do. 


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Exile

We had a lovely week at Pawleys Island, SC, as usual. Each year, for five years in a row, we've gone to the Sea View Inn for a certain week in late July. It's family week in that kids are half price, but also in that the tone of the inn changes from a more quiet and contemplative retreat to a place that can accommodate the boisterousness of children on the beach. Since the same people tend to come that week, over the years we've gotten attached to them, and the kids have developed slow-moving friendships with the other kids.

I should also add that when Ben's mother was a child, she went to the Sea View Inn, and when Ben was growing up he and his family went to the Tip Top Inn, down the way, which was later wiped out in Hurricane Hugo. That is to say, going to Pawleys in the summer is something of a long-standing tradition in his family, and now in ours. 

That's what makes what happened all the more stunning and painful.

We've been exiled.  

On the way home we reflected on how smoothly the week had gone, compared to last year when I was so sick I was practically an invalid, and the year before when Ben had a miserable work issue hanging over him the whole time. I felt that, at nearly four years old, Elias was getting a lot easier to manage. And Isaac, a big seven, could roam freely with the kids his age. I loved the moments when I was sitting on the beach, reading War and Peace (I read the first 300 pages of the new Pevear/Volokhonsky translation and it's excellent!), and I could look over and see one boy digging holes in the sand, while the other attempted to surf. Ben caught a jelly fish in a bucket , and I found a huge live conch. Someone else caught starfish, and a broken-off leg walked away by itself. All around a lovely time at the sea side. So I thought. 

Then, after we'd been home for a day or two, we got this stunning e-mail. It said that our reservation will not be honored next year. There have been complaints about our lack of supervision of the kids, and therefore we've gotten the boot.

Initially, my reaction was complete shock. I tried to call Ben but he was in a meeting, and the hour or two before I could reach him felt very long to me. I went into a shame spiral– we are horrible parents and have raised two monsters. Then I went to the opposite extreme– they are totally good and normal boys and the inn is run by child-hating idiots, and they were in the ocean the whole time, what could they possibly have done?? And I didn't like it there that much anyway! 

 

Then I started reviewing… they were in the ocean or on the beach probably 75% of their waking hours.  

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