Fine Young Fauves

Okay, I saw my beloved Vince yesterday and his team, and I am feeling better. First off, I was very validated by the way my story drew a crowd in there, and the way Vince's mouth was hanging open, literally, in complete shock. Of course, he's very professional, and she's sort of a colleague in his same field, but he stammered, "I've-I've never known her to do something like this."

But he fleshed out the context a little bit. First of all, he says that she loathes patient management. She almost never follows up with anyone at all– maybe like 2-3%. Her whole orientation in the world is diagnose and move on. (Although I could argue that if that's her one job, she's done poorly at it since my diagnosis is still totally up for grabs.) He said that her predecessor, who is a good friend of his and the other big name in otoneurology around here, tried to follow every patient, and keep track of them, and spend hours with each one. But he couldn't cope with the overwhelming quantity of people he needed to do this for and his job became impossible. So she came along and went the opposite route, which is where I find myself. Also she does view herself as all about ears, more so than all about balance/dizziness. If someone is not in her little box, she sends them away. I'm not supposed to take this personally.

I think the only reason she wanted to see me again (remember: she told me to come and see her in three months, so that's why I was there) was because three months ago Meniere's was still on the table. Indeed, the diagnosis of the guy who sent me to her was firmly Meniere's. So I suppose she needed to check on that, because if I did have Meniere's, however little she wanted to deal with me, I would in fact be hers. But in the ensuing three months, I've been increasing my salt to the point of insanity and it only makes me feel better. (This is the POTS blood pressure thing- the main cure is increase salt and strengthen legs, both of which I've been working on.) If it were Meniere's, that would not be so. So within two minutes she surmised that I was not a Meniere's patient, and whatever fucked up mess in making me dizzy, it's not her problem. Hence, the old heave-ho.

The other thing that Vince really helped with was to check into the particular neurologist I'm seeing later this week, and to add another one. He knows everyone and knows what I need at this moment, what a huge help! So I'm seeing a spine guy on Thursday (my birthday!! how happy), because there could be a spine situation that needs work. Yesterday I can say that I went in very dizzy, and Vince and Co. messed with my neck for a while, and I came out less dizzy.  Then I'm seeing another neurologist right before Christmas (the soonest available), who is all about dizziness and related issues. Vince thinks that this will be a person who can look at all the tests I've had and pull it all together into a coherent narrative. So that's hopeful. 

Lastly, and perhaps most encouragingly, Vince assures me that none of this really matters all that much. The treatment is the same, because his approach is to try things and see what works and then follow an idea and amend it as needed. He just tinkers and tinkers until he gets a well patient– and seeing me for two hours twice a week is certainly a lot more helpful than my ten minutes of fame with the higher powers. He's the one who really understands my problem the best, and he will send reports to these other people and give them the head's up about what's happening to me. 

Also, in closing, he brought up an unlikely possibility: maybe she's right. Maybe it's not my ears. Now, why would she say it was, and why didn't she send me to a neurologist and cardiologist in August?? Who knows? I said my line about "But you can't tell me my June 11 attack was NOT about ears!" and he said, "Well, you could've had a migraine episode that did that." I said, "REally?? A migraine can make you go deaf?" He said, "All your senses need to be processed through your brain. I had one lady in here the other week who was completely BLIND from a migraine. She was really freaking me out!" But he added that if so, neurologist number two will be on that case for sure. 

Oh, who knows?

I came out of there pretty tired. Also I've been dealing with the dregs of h1n1. Yesterday I had a sharp pain in my side when I inhaled and felt very short of breath. This led me to worry that I was getting pneumonia and would wake up dead, like this poor woman my age who died suddenly of h1n1, who's funeral my mom went to recently. The fact that Ben is out of town all weekend made me all the more nervous, and so I called the normal dr to have someone listen to my chest and tell me I just have a pulled muscle from coughing. I'm going there later this morning, and hope for a basically clean bill of health. I mean, setting aside my brain, spine, ears, and whatever else effects dizziness.

I'm still pretty dizzy.  

I've been ruminating, fuming, mulling and analyzing yesterday's conversation with the goddess of vestibular problems all night. When I opened my eyes this morning, the whole thing started up again in my head right away. I just went to attempt to exercise, and thought about it the whole — brief– time. Guess what? Too dizzy to exercise today. Might be that I'm not quite done with the flu, but after walking a few laps and doing the leg press and the lat pulls, I started to feel so weird and light-headed that I worried I was a falling risk. I packed it in after 20 minutes and came home. Depressing and frustrating! And what this means is that to this very moment my vestibular problems are still throwing a wrench into my life. "A Spaniard in the works!" as my mother used to say.

Okay, so let's review the timeline:

I was sick all spring, with every type of upper respiratory ailment in the book, including a raging ear infection in my left ear that reduced me to tears and apparently ruptured May 1. (Circumstantial evidence… the pain was unbearable. Then, just as I was about to drag my children out into a dark and rainy night so that I could go to urgent care for it, it got better. The pain went away and the drainage began. An open and shut case??? I don't know, but there's the evidence. This could be irrelevant, in any case, because Vince said that sometimes people who have a viral inner-ear attack that leaves nerve damage actually feel nothing and have no awareness of having been sick at all.) Then, a month later I was down for the count with a horrible acute sinus infection. I got a CT-scan to prove that one, as well as a chest x-ray to rule out walking pneumonia. (I'm telling you, i was totally sick!) The dr. heard something in my lungs at that time, and gave me an antibiotic strong enough to kill both the sinus infection and any pneumonia that may have been in there too, although none was on the x-ray. 

Okay. Now, on day 9 of the antibiotics, which was June 10, I totally lost hearing in my left ear– the same one that had the horrible ear infection six weeks before. My ear also began to ring loudly and to feel like it had been on airplane when the rest of me hadn't. This brought with it some dizziness from time to time over the next 24 hours, culminating in the really horrible, full-blown vertigo attack I had on 6/11, while driving home from the last day of school picnic.

Now, you honestly can't tell me that that attack was not EAR related. You can't. I won't believe it. My EAR was a major part of it– I had a whole set of tangible ear symptoms. My hearing was tested the next day, in fact, and it was obvious that my left ear was not working well, either for balance or hearing. You can see it plainly on the test, even I as a lay person could see  the difference.

So… now I'm being asked to believe that I had a major ear-related episode, and then, completely out of the blue, at the exact same moment, some other part of my vestibular system went spontaneously haywire, like my spine or my nervous system, or my heart and my blood pressure, and now THAT has caused nearly six months of totally unrelated, different, un-ear-related dizziness and balance issues. Because my ears are "fine" my ears are "normal."

I find this VERY hard to believe. In fact, impossible. It's just as bad as the first wrong diagnosis I got, that after all this ear and head stuff going on for months I had come down with a totally unrelated and spontaneous case of Meniere's Disease! 

And why, looking at the same data she had on August 9th, did the vestibular goddess walk in to the office that day and say, and I quote, "Something bad happened to your left ear. I can't say what, or why, but I can measure the damage." Now she denies everything and washes her hands of me.

I think the answer here is really quite simple. The Emperess has no clothes. She simply didn't do her job well yesterday. (She did mention that her neck was hurting, perhaps that explains it.) She didn't give me good care. She didn't review my file. She doesn't remember what she told me before and I've fallen through the cracks. That's the only explanation that holds water. So, why am I surprised?? Our health care system is in a shambles and this is part of it. And, surely, the cost to see her yesterday was likely $300 or something like that, but luckily, having paid through $4,000 out of pocket for my health care this year, (not inlcuding all the boys' separate health care costs, prescription drugs and tons and tons of co-pays) I should not have to pay that myself. Still, someone does, and that's stupid too.

Question: is there any point in calling and demanding a further explanation? Is there any point at all? Her assistant was already pretty snippy with me about my MRI when I called back for more information, and there's no way I'll get to talk to the oracle herself. I'll just get the guard dog, who will treat me again like a special needs child, or a problem child, and surely write in my chart that I'm Trouble, capital T, and I'll be black-balled. (Perhaps this already happened…?) And since this story clearly is far from over, maybe I shouldn't. And what will it accomplish? She's never going to admit she's wrong. 

Oh, also, good news about the tilt-table test I get to do with the cardiologist on Christmas Eve day– I read this yesterday online, "The test is over when the patient faints." Sounds great right??? Something to look forward to.  

A totally exasperating, miserable, frustrating, worse than useless follow-up appt with the marvelous dr. today.

Remember how three months ago I went up to the Cleveland Clinic and had six hours of grueling vestibular testing, and the upshot of it was severe damage to the balance nerve of my left ear, and the prescription was vestibular therapy, which I've subsequently been doing twice a week, plus tons of homework?

Well, today I went for a follow-up appt with the same lady and TODAY she totally changed her story. She looked at the exact same data from the exact same tests, and apparently FORGOT that she already gave me the "results" quite some time ago, and apparently didn't read her own comments, so today she says, and I quote: "well, your ears are fine. All your tests are normal."

But–but–but–but.

I was literally speechless.

I said, "But what about my balance tests?" And she had to admit that those were horrible. But what's causing it??? Anyone's guess. But NOT ears. I said… "But you said last time that I had nerve damage to my left ear, and that was causing it." (She even wrote on my prescription to Vince "acute LEFT vestibular disorder." If nothing's wrong with my ears, why did she single out the left one? She said, "Well, I don't know what's causing it. I thought  maybe a virus… but even if so it didn't leave any damage… Because all your ear tests are normal. That's all I can tell you." 

So she's palmed me off for more tests from others, a neurologist (to check if something in my spine is messing up the lines of communication) and a cardiologist (because Vince thinks I have this blood pressure problem called POTS, which I think may be true, as I have episodes of low blood pressure that can really be bad). And so I said, "So we're done??" (Again, total disbelief in this whole thing.) And she talked to me like I was a special needs child, and said, "Yes, I just don't know what else I can tell you. It's not your ears."

After this I called Ben from the car, and ranted for a while, and felt like smashing dishes, and Ben very calmly pointed out something  very important: "But you ARE getting better. You can take a walk now, which you couldn't do two months ago." 

Good point. That's the point. I will hang on to that. Whatever it is, or was, or shall be, I AM getting better. Whatever is wrong, the vestibular therapy seems to be helping, for whatever reason. Or… not. Maybe it's just a total coincidence and I'm just better because time is passing and I'm … oh, who the fuck knows? 

I can't wait to tell Vince about all this. I hope he calls her, I really do.

And don't tell me that my full-on vertigo attack of 6/11, WITH hearing loss, mind you, and full 360s, and vomiting, was NOT ear-related. Just don't tell me that, because it's false.

I feel like, I get myself on some sort of solid ground. I get some bearings and in a process and on a path, and then boom– someone pulls the rug out from under me. This is what happened with the summer and the Meniere's too. Low salt is bad, high salt is good, and black is white.  I get my bearings again, and now this.

She just washes her hands of me. It's like we had a date three months ago that meant a lot to me, and meant nothing to her whatsoever. And this is the "world class care" the Clinic is always gassing on about??

AAAARRRRRG.

But. I. Am. Getting. Better.

Focus, focus, focus.

Next Monday, the neurologist.

Another turn in the maze, and lord knows we can expect a WHOLE bunch more conflicting, contradictory and potentially useless if not harmful information!

Is being a smartass a symptom of H1N1? If so, then Isaac has definitely had it. Indeed, I think it's swept through the house in the last two weeks, felling each of us separately like a stand of trees.

First was Elias, the smallest, weakest member of the herd. A week ago Thursday (oct 29, I guess), both boys were too sick for school. Sick, but not sick-sick. They were coughing, slightly feverish, but happily sitting side by side in bed with plates of pancakes and "The Munsters… Today!" playing on hulu. That was in the morning, though. By late afternoon (irony: we were planning to go get h1n1 vaccines at that exact time), Elias woke up from his nap with mega-croup. Those of you who haven't stared down the real croup have no idea the dread and the code red feeling of it. But now that I've been down this road with him many times, I had a protocol to follow. 1) albuterol puffs; 2) cold air treatment; 3) if still crouping, head to the ER. In less than ten minutes I ran through them all. Words of the dr came to mind: "I don't want you to play emergency room at home, though. Take a few minutes to get him cleared, but not too many. Then go!" 

I dragged Isaac out of bed and threw clothes on the screaming, crouping one, then drove. Part of my hope was that the calming motion of the driving and the cool air would get him to stop, that we would get to the ER but not have to go in. But when we got there his breathing was still horrible, and his airway so constricted he could barely whisper. He had the dreaded "stridor at rest." So I brought him and within just moment or two they had him hooked up to a breathing treatment, which made him scream, but shortly had the swelling down in his little trachea and his airway open again. They found an ear infection, gave him antibiotics and steroids, and kept us another three hours or so for observation, but that was it. He was fine.

Fast forward to Halloween– Isaac's turn. First of all, you should know that we all put tremendous effort into making Isaac a godzilla costume for Halloween. Over the preceding weeks, Ben and Isaac started out with a chicken wire armature, covered it with paper mache, and then we painted it. Meanwhile, I cut and glued a jumpsuit, fashioned a large tail stuffed with batting, and worked on hands and feet to go with it. Indeed all day of Halloween day, Ben and I were scrambling with the details. The dining room table was littered with godzilla parts. The tail structure (Ben had pinned it to the jumpsuit, but it couldn't support the weight, and so I had suggested that it be attached to the head piece with a linking section of chicken wire) had to be reworked. Finally, it came together, something like this: 

and this:

We didn't get a picture of the whole costume all together, with hands and feet and jumpsuit… and glowing light-up mouth!… because around this time, the boy in it started seeming, well, sick. Not just a little sick, either. But real sick. TO begin with, he had a cough that would not let up. I gave him his normal flovent and some albuterol to see if that helped. Still coughing, so I gave him another round of both. After a while he was still coughing, so I gave him a third dose of albuterol and planned, if this doesn't work, I'll have to take him to the ER. 

His breathing did finally clear (double flovent, triple albuterol… and it was fairly okay, ie. not a good sign.) He went in to the TV room and curled up on the couch. I checked on him and thought he seemed a little feverish. I took his temp and it was 99. Okay, so…. we'll see. But then he fell asleep for the whole afternoon, and as he slept, I kept taking him temperature (in his armpit, adding a degree), and it kept climbing. Until it was maybe an hour before he was supposed to go up to Penninsula to meet his friend Jens for trick-or-treating, and it was 102.8 and he was unconscious.

At that point, we had to accept that it was impossible, not gonna happen. Ben decided to take Elias (a ghost, who looked a little too much like a Klansman for my taste) down to his parents for trick-or-treating there. IN our town, Bath, the trick-or-treating was actually Sunday night, so we thought it was possible that he would be well enough the next day. So all evening I kept my sick-child vigil. Just sitting there and checking his breathing (the thing I was really worried about the most), and taking his temperature and making sure he had the right amount of blankets– not to many or too few– and reading on the internet about flu symptoms and what to do about them. He slept, and slept, waking up one time to cry his eyes out and semi-vomit.

The next morning, he seemed a lot perkier, and the day look promising there for a while. His temp came down to 99 and he began to run about the house like a nutcase, as per normal. However, around mid-afternoon, he collapsed while watching Tom and Jerry's Greatest Chases. His temperature went up again. He slept for ten hours… right through trick-or-treating (I took Elias, aka Superman). When he woke up at 10 pm, apparently feeling quite well, he asked whether it was time to go trick-or-treating now, and we had to break the grim news to him. He sobbed and sobbed, understandably– all that candy!! Not collected!! But I did cheer him up by handing him a huge bag of candy– Elias's haul was enormous, even divided by two.

Ben crashed and I was exhausted, but both boys were sugared up. In a moment of unprecedented bad parenting, I set them up watching "The Munsters…Today!" on hulu (don't check it out!), and left them there, together, at 11:30 at night, with two huge sacks of candy. "Oh, this will not end well… " I predicted. But I went in the other room and fell asleep anyway, because I just couldn't stand up anymore.

As it was, they crawled into bed with me a scant hour and a half later, sated, and somehow (perhaps due to illness) tired! They slept all the way to morning, despite the sugar binge. Elias was well enough for school, but Isaac had been running a fever all day Sunday, and his school (wisely, I think) has a 24 hour rule– you have to stay home for a full 24 hours after a fever. I took Isaac to the dr on Monday, because I suspected he had an ear infection on top of it, and with his asthma you just can't fool around with a respiratory virus. He did have an ear infection, so got antibiotics and also oral steroids to keep his airways functioning through it (on top of his usual inhalers).

How to create horrible behavior in an active child? SImply lock him up in the house for a week, feed him tons of candy, and put him on steroids!!

Ah yes, he was a gem much of the time, demonstrating why "climbing the walls" is not just a figure of speech. But he would alternate that sort of derring-do with lying flat and still, baking with fever, and/or coughing in some horrible fashion. On Weds morning, just when I thought it was all over, he barfed. Yes… we were this close to getting in the car to go to school– sweet freedom– and he threw up all over the place, which meant that he had to stay home, of course, one more day! (I think the barfing was not a stomach thing so much as a drainage/throat crud/gagging situation… TMI.)

Meanwhile, I was loosing my mind, not all that gradually. I missed vestibular therapy, Friday, Monday, Friday, and will miss it Monday again too… I haven't been doing my exercises too well in the midst of all this, and now of course I'm sick too. For me it really kicked in on Thursday, when I had periods of semi-delerium and horrible coughing. I really thought I wouldn't be able to get Isaac from school (I already had Elias), and also felt like it was going to bring on a vertigo thing, or something really bad was about to happen. But I fended it all off with a barrage of over-the-medication, five grams of vitamin C, neti potting galore, green tea, and half a snickers. This got me through the afternoon. When Ben got home I took to my bed and lay there with fever and chills and horrible chest hack. 

Friday… still sick. I canceled vestibular therapy and spent my precious two child-free hours trying to get well at light speed. Didn't work.

Still sick today, although life is better because Ben (who is also sick but will never, ever listen to reason… the CDC hates people like him, germ vector that he is), took the kids on an outing, and I got to sleep a couple more hours. Now it's incredibly beautiful out today. Sunny, full of color, and may crack 60 degrees. I'm thinking of trying to clear my lungs with a walk.

Has it been h1n1? I sort of think so, but there's no telling. The doctors aren't testing for it and the symptoms are the same. We've been trying to get into one of these wait-3-hours-in-line clinics to get the vaccine, but one or more of us has been sick every time there's been a chance to do it.  The next option is on Thursday, and surely, surely, we'll all be well by then!  

Wow– that was interesting. I can NOT provoke a vertigo attack just by wearing bad shoes and attending a martial art's themed birthday party. I rotated through several pairs of soft squishy shoes last night, challenging myself pretty much hourly to adapt to a new ordeal of footwear. I got plenty dizzy, felt car sick, wanted to take them off and lie down many a time. But– BUT– I did not find the room doing a full 360. I didn't get true vertigo. And most importantly I did not get sick enough to actually throw up.

What does it all mean? First off, to me it's a ray of hope for the next six months of weather. I means to me that maybe I can tough it out in shoes for an hour here or there when I have to go somewhere, and that maybe I am not looking at losing my toes to frostbite. So, that's good news! It really is. It takes a lot of the pressure off. It emboldens me. Maybe I'll just throw on some seasonally appropriate shoes of my choice and go for a walk this fine fall day. Would that be crazy? It's hard because I have no idea where the line is, and dread crossing it, so I err on the side of caution (wouldn't want to be two miles from the car when it hits, if you know what I mean).

It also may mean that all my desensitization work– walking on foam, pillows, towels, sisal, etc– has actually started to help. Could it be? Is there a light at the end of this tunnel?

I don't know. It could also be that there are a lots of other inscrutable variables– hormones, sleep, diet, this other condition called POTS to name a few– that are tipping the balance one way or another. Maybe if I tried this test in a week or two I would get a different result entirely. I don't know! But it's information gathering if nothing else. I'm going to put a toe in this morning and see how it is to walk a short distance in questionable shoes. (Maybe I'll go back and forth only a half mile or so from the car at any time.) And of course I'll see Vince tomorrow and tell him that he won his bet. Then I hope he can help me interpret the meaning of it.  

In the meantime, I give thanks that the night wasn't hellish and the sun is shining this morning.  

I'm sitting here wearing wool socks and running shoes. Why, you ask? Have I gone mad? Am I cured? Unfortunately, no and no. My shoe issues are still huge. Today I endured outright mocking at the farmers' market. It was maybe a brisk 39 degrees and rainy and there I was with my toes hanging out in lovely summery sandals. "aren't your feet cold??" people asked me, not unkindly but baffled and concerned. If there was time I gave a brief overview. But most people didn't ask, just assumed I was a slave to fashion idiot who has no clue about how to dress for the weather. This offends me deeply on many levels. One lady cackled about it basically to my face. "–And she's wearing sandals!!" ha ha ha, what a scream. Oh, yeah. I gave her the fish eye all right. 

But that was this morning. I was gearing up for Isaac's 7th birthday party at the Taekwondoh studio, gathering supplies. I didn't want to be incapacitated by dizziness BEFORE the party. I knew the party itself (a large room with the entire floor made of foam– lovely) would be a trial in vestibular terms. But now, to be frank, I'm actually trying to provoke a full-on, no holds barred vertigo attack. My goal is not just the ill dizzy feeling I now feel already, but actual 360-degree rotation of the room which more likely than not will lead to violent vomiting. 

This is my homework.

All of you who have crammed for the bar exam, or stayed up 72 straight hours to finish that big paper, or slaved over the last 400 pages of your PhD dissertation, you don't know anything about homework suffering. THIS is REAL HOMEWORK.

The point? Is my vestibular therapist just a sadist? Well, no. He's actually a very kind man who is trying his utmost to understand what ails me and how to help me. Last week I had a sort of baffling attack in the middle of the night, which has never happened before. I woke up horrendously nauseated and nearly barfed. I took antivert and eventually it made it stop, and I went back to bed. As I was drifting off, I thought I saw the windows move. Stomach flu? Well, no other symptoms and no one else had it; food poisoning? Well, I ate only things that everyone else ate and everyone else was fine. A migraine? Well, I've never had a migraine, had no headache, and antivert doesn't cure migraines. So… was it that I went to the farmers' market (last Saturday) and then to the Natural History Museum, where DEAR GOD they project things on to the floor!!? Looking at all the options it seemed most likely that it was an attack of vertigo provoked by an overload of the vestibular system during the day. But we don't know that for sure… it could have been a fluke. I'm going to see the Cleveland CLinic specialist, Dr. White on Nov 9, and Vince wants us to have gathered the information she will need by then.

So, hence the test.

Apparently some forms of vertigo are impossible to induce, like Meniere's. (Well, you can induce it by going out and eating Mexican or Japanese… Meniere's is all about salt.) The test for me is whether my vertigo can be induced by external forces, such as shoes for instance. This week shoes, next week, eyes. We're being scientific about it. And Vince bets that I can't pull it off. He just thinks I will feel horrible– but that doesn't count. He wants spinning, and when I'm spinning he wants Ben to look at my eyes and see which way they "beat." 

So it's for science. And the way I look at it, it's win-win. Either we learn that YES INDEED I can provoke a horrible vertigo attack on par with the 6/11 attack that started it all, or we learn that the shoe thing is really not a big deal after all. Maybe it's like there's a bad first hour and then it gets better? Since my goal normally is to avoid vertigo, I always take the shoes off as soon as I start to feel horrible, so I really don't know how it's going to play out.

Ask me tomorrow.  

He is an alien, from the planet X. O.

That explains a lot.

I mean, would any child of mine use an "inappropriate finger gesture" at school? Refuse to complete any work whatsoever, nor sit down, nor refrain from jovially kicking, hitting, poking and tickling the other children? Surely not!

He has discovered the truth about himself during a somewhat rocky transition to the first grade… his new teacher has high expectations. And, as he has been with every major transition in his life thus far (see the first six months after Elias was born, for example) he's out of his gourd. One hopes it's temporary. On the good side he's bonding with his little friend Jens (Swedish J, pronounced Y)… who actually as luck would have it is also from X.O. During the times they are not working at school they talk about their shared history. Indeed, they are twins! But I'm getting ahead of myself. Here's what we know so far about the planet:

• It's in the Andromeda Galaxy (which is poised to collide with the Milky Way sometime in the not-so-near future)
• Its atmosphere has lots of pressure
• Regular Earthlings can't breathe there, but XOians like Jens and Isaac can (regular Earthlings will go unconscious)
•  The surface is red and desolate now like Mars and there are lots of volcanoes, but it used to be green and beautiful like Earth
• It's hot there all the time, and alternates a half year of daylight and a half year of night
• There is an enemy race that lives in the volcanoes, called the Vilgax (pl.). They have green skin and big black eyes, with octopus-like heads and tentacles
• The regular XOnians are greenish brown and catlike

And here's what little we know about Isaac's true biography:

• He and Jens were newborn twins when the planet was set to explode and reform. To save their lives, their father (a scientist) sacrificed himself, put them in a spaceship to Earth. They emerged through some sort of portal.
• They landed in Cleveland at the same time I was in the hospital giving birth. Jens found his way to his family somehow. At our hospital, the babies were switched– my baby went to another family, and Isaac, fresh from the spaceship, was given to me instead.
• Isaac's real XO name is Buckarin; Jens's real name is Buckasol; and Elias's real XO name is Tutarin. (I get the feeling Elias isn't really from X.O. at all, but Jens and Isaac are tolerating him.)
•  Isaac has a birthmark on his chest, which is the map of his country back on X.O. (We've traced it– sort of rough-edged continent with one deep bay and a large island off the coast.)
• If you cut off Isaac's arm, you would find electrons and a few drops of blood. He's also part robot.
• They have a space ship waiting for them in Africa, although Isaac is not sure of the country. At some point, when they are ready to return home, they will go and find it.
• On X.O., eating carbs and sugar makes you strong and healthy, with sound white teeth and big muscles.

That part especially rings true, as Isaac is a staunch carbotarian, who refuses to ingest protein nearly all the time. Somehow he sustains life, but i"m not sure how. Perhaps this is his alien nature and I should just accept this as a solution to the mystery.

This brings me to Isaac's motto. Maybe like me you didn't realize he even had a motto. But he does. 

A few weeks ago we were out for dinner. Isaac was ordering when he suddenly declared, "I don't like Pa's motto!" I said, "Oh, what's Pa's motto?" 

He said, "Eat what you order!"

We discussed this for a little while, the pros and cons thereof, and then Isaac announced, "Wanna hear Nana's motto?"

"Sure," I said.

"Work hard and be friendly!"

"Oh," I said, "that's a very nice motto. I think I'll adopt it myself."

"Wanna hear MY motto?" he asked.

"Okay," I said.

"NOTHING BUT SUGAR!" he declared.

Words he truly attempts to live by. We will put it on a banner, and he can fly it all the way back to X.O.  

Asthma.

It's looking all too possible that Elias, my precious little honey spilling, Benadryl drinking, climbing, dumping, smiling sunshine, has asthma.

You see, he has this tendency to get croup. Like the slightest sniffle turns into a horrible crouping episode. On one occasion he was actually going a grey-bluish color and I was one second from calling 911 when I got it to stop (cold air, calming the child down). On another occasion, I had to rush him to the E.R. in a horrible blur of traffic and lanes and honking. Over the last year or so, it's happened about five times, which is really quite a lot. Most recently it was right when school started. He got a cold. That morning he woke up with croup.  (People bandy about the word croup to mean any bad cough, but it has a technical meaning: swelling of the airway, which taken to its farthest extreme can result in a total inability to breathe.) We got through that episode with the cold air treatment, and went to the doctor later that day as follow up. The doctor said okay, it's a pattern. You'd be wise to take him to a pediatric pulmonologist and get his trachea checked out for structural issues.

We had that appointment on Tuesday. He had just gotten his wonderful new doctor kit from him Grandpa Warren and Grandma Patty (we opened it on Monday night) and so he brought the dr kit with him. It was a very helpful thing during all the waiting in little rooms– he took my blood pressure and unfortunately gave me about 400 shots in the foot and ankle regions (what he could easily reach…)

The doctor listened to the whole situation, examine the healthy and glowing Elias, and then concluded: "Let's see if we can get it to stop happening. Let's put him on the asthma protocol. That way, we can test. First of all, the inhaled steroid will keep his tracheal tissues pretty flat. Then you can use the albuterol (emergency asthma medicine) when he's having an episode. If it's truly croup, it shouldn't work. If it works, it's probably asthma."

I said, "What do you think? Do you think he has asthma? Do you hear anything?"

He said, "Well, there are no smoking guns right now, so to speak… but with a brother with asthma and with this crouping thing, it's looking suspicious. Let's just say I hope not."

He ordered all these x-rays of the chest and throat that day, during which Elias was a total wonderful peach. I mean, he was so cute. He did wiggle a bit, and attempt to continue eating the Luna Nutrition Bar for Women I had dug out of my purse for him, but he didn't cry or struggle. We went home and picked up a whole new set of medication for him. Odd, because at that moment he was so bright and pink and totally robust.

Well, so yesterday was his actual birthday– we've been celebrating bit by bit over the last week. He has had a little nagging cough like the rest of us. We had a pretty vigorous play date after school, and he was running around for about two solid hours. He also inhaled a fair amount of dust, as the children were giving themselves dust baths, and then dousing themselves in the drinking fountain, and then returning for a light breading in dust. On the way home from that, Elias fell asleep in the car, quite an exhausted and filthy little fellow.

That was very late in the day, almost dinner time. After sleeping an hour or so he woke up in this weird state of coughing, not crouping coughing, but just endless coughing. This quickly evolved into a horrible bout– coughing plus crying plus gagging. I couldn't tell if he was going to throw up so I brought him into the bathroom. Then he was coughing/crying/gaging and trying to throw up into the toilet. All this left scant room for inhalation– he was not getting too much air at all. Soon I realized that there was no vomit forthcoming, but his tongue was hanging out, like he was really unable to get air, and he was slobbering as if he had a serious throat blockage. I yelled to Ben to bring the albuterol, and I was again poised to call 911. I got the inhaler on his face and he got some good breaths of it down.

Then, within about two minutes, the whole thing was over. He stopped coughing. He stopped crying. He stopped gagging. He curled up in my arms and went to sleep.

Fact: the albuterol worked in the nick of time. It worked beautifully, immediately. My joy over this– my sense of relief– was slightly overshadowed a bit by the reality. Here we are. It looks like he has asthma. 

Such a bummer.  

Okay, treatable. Also, it's not definitive, right? Just one episode? It could have been a fluke.

Isaac was three when we diagnosed his asthma for real– (see the hospitalization story in the archives, March 06 , ugh.)

This depresses me no end…

to cheer myself up, I will share a light moment that happened recently.

I don't know if I can explain this and do it justice… picture if you will…

I was sitting in the kitchen. From the other room, out of view, I heard the sounds of struggle. There was grunting… effort… shuffling and scuffling. Then a loud thud as a body hit the floor. I said, "Elias? Are you okay in there?" And he called back, "Yeah, I'm fine. Just puttin' on my goggles." 

.

Major footwear issues around here, and it's not just fall fashion week.

Basically the problem is that I have one (1) pair of shoes that I can stomach. All others bring about dizziness and motion sickness in very short order. Like, within minutes. Well, so you say, at least there's one pair of shoes that ARE working, right? Yes. You would say that. But you'd be forgetting that they are totally bare sandals . And I live in Ohio. And it's September 25th. This would not be problem in Florida. I was talking with Vince about the problem the other day, and he said, "Well, there's no rush on that." And I said, "Vince, it was 49 degrees when I left the house this morning." 

Yes, that's the problem.

I thought I had this solved about a month ago, when I scored my Troentorp wooden clogs (they're wet-lasted! hand-nailed!). As these things go, I really liked the clogs. They seemed a likely success, because they are made of wood, hard and smooth. But unfortunately they are not flat. They sort of rock forward in a way that reminds me unfavorably of this horrible rocking wooden board I'm forced to stand on in vestibular therapy. They made me ill and I was back to square one. 

I brought the problem up in vestibular therapy on Monday. Vince looked the shoes, looked at my feet, watched me walk. Then he said, "I have a foot man here, let's call him." He called over young Matt, the attractive foot man, who also analyzed the problem for a few minutes. He decided that Birkenstocks might be a good bet– they are a) hard, and b) a footprint that conforms to the foot. Two qualities shared by the sandals of wonder. So I tried them. I walked around in the shoe store with some on for a few minutes, and although I did feel slightly ill, I still felt it was my best bet. So I ordered some online. They arrived early in the week. Butt ugly. I mean… they looked like duck feet. Like big, big flippers . Hello, Mrs. Baggins? But I said, okay, for medical reasons I will try them. I walked around the house for ten minutes and already began to feel very dizzy. The texture! The arch! The way the adhere to my feet at every step. Not working. Then Ben saw them and said, "I FORBID you to wear these shoes!" I mean, he pulled out the "forbid" concept. Like I'm chattel? But then he cracked me up by speaking in a German accent and saying, "Try our aesthetic therapy– if you think you don't care about appearances, after our aesthetic therapy process, YOU WILL CARE."

So that was a no-go.

Today we talked about it some more in Vestibular Therapy… WHAT is making these shoes work? What magical unique combination… ? The flat hardness, the utterly smooth almost glassy texture, the way I wear them with bare feet (would any socks combined with any shoes cause the same problem?) or the way the stimulation is intermittent? They do not touch my feet for a second, then they slap my feet, giving me sudden blast of input After much discussion this morning, the current expert opinion is all of the above. (Foot man Matt is going to e-mail a foot expert in Virginia for further ideas…) My feet give me contact with the floor or ground and thus are critical to my impaired ability to balance. Muffled by socks or padded shoes of any kind, I lose a major key to staying upright and the result is dizziness. So… how to find flip-flop snow boots? Do they make those? Electric socks with these sandals? Or am I headed, god forbid, down THIS path ?

Cue hyperventilation.

Deep breath.

And foot man Matt raise another concern I hadn't thought of: how am I going to walk on the snow itself?

Okay, so now he's also trying another angle– to desensitize my feet. I have a whole new host of exercises to increase the ability of my feet to cope with textures and other input. I'm supposed to try sitting in a chair and putting my feet on various surfaces for a few seconds, towels, pillows, etc. Toe curls and slight pressure on softness. Try to just wear socks around the house in bare feet for five minutes. Maybe this way I'll be able to acclimate to some of the various shoes I have…? But it's a race against time. The forecast this week has highs in the 60s and lows in the 40s. .. …  

While all this vestibular constant process has been going on, the kids have maintained a steady supply of their usual comedy gold, which I feel must be captured before I forget.

For one example…

In the car one day, we were at a stop light. A woman riding a motorcycle pulled up and stopped next to us, and the following conversation ensued.

Isaac: A LADY motorcycle rider???!

Me: Ladies can do everything men can do, except for pee standing up.

Isaac: (pondering for a moment) Hm. If you got yourself a PENIS SCULPTURE, with a hole in it, you could just put it on yourself and then pee standing up!

Me: … um.. well…

Elias, pipes up politely: Can I have a penis sculpture?  

***

Or another, surreal car conversation with Elias, who was looking at a book called "Spooky Mazes" at the time.

Elias: Can I touch spooky mazes?

Me: um, well, you can touch the paper. You can touch the picture of one.

Elias: Can I touch a real one?

Me: well, there are no 'real' spooky mazes. They are just in pictures.

ELias: What Spooky Mazes eat?

Me: well, you see, they are NOT REAL. They are not alive. They don't eat.

Elias: Are they friendly?

Me: Um, well, they are just pictures… not real… um..

Elias: Can I touch a real one– if the lady says yes? (Apparently suggesting that the spooky mazes might be guarded by some kind of docent.)

Me, giving up: Okay, IF we find a real spooky maze, and IF the lady says yes, then you can touch it.

Elias: YAY!! That's my favorite!

Me: (WTF???)

*** 

This one was more of an audio-visual, that would surely have won big money on America's Funniest Home Videos…

Elias, calling from the other room: Mommy, mommy! I peed in my potty!

(Sound of feet scampering through the living room.) (Huge crash) (Parts of the plastic potty fly into the kitchen.) (Stunned silence all around.)

***

At the backyard campsite: 

Isaac, calling from inside a tent: Mom! There are lots of bugs in here!

Me, sitting by the campfire:  Oh really? Are they mosquitoes?

Isaac: No… just midgets.

***

In the house, Isaac pulls me aside: Mom, can I speak to you privately? 

Me, impressed by the secrecy and importance of this conversation… what will it be about? Is it time for 'the talk'?: SUre, okay. (moves us to private room and closes door. Now we are alone.)

Isaac, sotto voce: Mom, when I grow up, can I be a ninja?

*** 

As we speak I have interesting patterns of tape all over my ankles in the hopes that this will help my dizziness. This week at vestibular therapy I got a slight clarification from Vince… no, he does not think my damaged nerve will ever actually heal up. He thinks what's done is done… although he allows that this is controversial. He says that what he's trying to do with the therapy is to retrain my brain to compensate for the damage and thus function somewhat like normal. He adds that the timeframe is more like a year, and that if they were to test me years from now, long after this was all over, he would still be able to show that the damage happened. I said, "So is it more like — this is an extreme example– but more like someone who's had a stroke, and needs to retrain the brain to work around the damage?" He said, "That's exactly the analogy that we use."

So it's sort of a semantic difference– is my ear going to heal or my brain going to work around it– the result will hopefully be the same, that someday, someway, I'll be normal again. But somehow it does feel different. It adjusts my thinking somehow. I'm reminded of a moment in Wilt Stillman's "Barcelona" (I was trying to find you the clip but I couldn't), in which one guy says to his cousin, who's been shot in the head and is recovering, "How's the physical therapy going?" The shot guy responds, "I'm doing it, but what's the upside of that? I mean, you work really really hard to relearn how to do things you used to be able to do much better before??" Yeah. That's about it. 

My other problem these days is footwear. All summer I struggled with this seemingly simple topic. It took me at least six weeks of horrible trial and error to recognize that there are only ONE pair of shoes that do not, in themselves, make me totally dizzy and car sick. What I finally figured out was that I'm at my best barefoot on a hardwood floor. Put me in a pair of squishy, horrible shoes like running shoes or Merrill's or something and I'm instantly sick. Literally instantly. At vestibular therapy, they make me march on foam– for ten seconds!– and I feel like hell and have to sit down for ten minutes afterwards. But wearing soft squishy shoes is literally wearing FOAM right on your FEET and it goes everywhere with you! Okay, so the Donald Pliner sandals (Ben: "it's a loin cloth for the feet.") (I don't know what these people are smoking, I paid $80 for mine) have been working for me, because they're much like carrying little pieces of hardwood flooring around under your bare feet. And this is all well and good. But now… hello fall.

So I did a lot of research on the hardest possible shoes and got myself some Troentorp Swedish wooden clogs. They are very hard indeed… but they feel so different on my feet, and have this weird forward rocking sensation, that I think the plain difference itself is now making me ill. But it's only been two days. I hope I will acclimate. Otherwise– I guess I'm going to have to invest in some sort of intense thermal toe socks and wear these very bare sandals through the winter.

Any suggestions out there for incredibly flat hard stationary fall-winter footwear, let me know…