Fine Young Fauves

I think the first ominous signs were on our way back from Memorial Day visit to Connecticut…

I'll have to pause this post here and change computers. This one's monitor is flickering and fading to black. Why? It's breaking!  

Let me further interrupt this post to say that I went and got a new computer, wrote a great deal, then it all went weird with different fonts and line spacing for no reason, and then… disappeared. That's right. A blog post about breaking things actually "broke" during the writing process.

W…. T…. F…..?

So, where was I? Well, on the way home from CT, the car started doing some odd things. Ben's foot kept getting rained on when he turned right, and my support socks were getting pretty damp on my side too. Then the DVD player went haywire, and the airbag light came on. In short, the air conditioning was not venting water properly, so that gallons of condensation were building up and sloshing around right inside the dashboard. When I say "gallons" I'm exaggerating. It was literally only a gallon and a half. 

Fast forward a couple weeks and we're paying a $3,000 car repair bill.

At about the same time, we hired a guy to repair the pergola, sort of our front porch type thing, which had been partially squished by a falling tree a while back. And, in an unrelated matter, another large chunk of tree fell towards the play structure, not damaging it, but making a big woody, leafy mess.

Meanwhile, the central air in the house went ker-flooey. It was boiling hot and I called to have it repaired. The first guy (there have been now three of them), who was crotchety and semi-toothless, and later proved to be incompetent, although was surely a well-meaning person, said that it had been hit by lightning. That was the only explanation, he said, because the whole thing was totally fried, through every element of the system. That sort of rang true, because we did have a major storm not long ago and remembered all being awakened by an extremely loud crack at 3 a.m. that set the kids both crying. The only answer, then, was to replace it. The estimate came in at about $3,500.

I called insurance to see if lightning strikes are covered, and their answer was a real hoot: in theory, yes, they are covered, but in practice… not so much. You see, when our pergola was crushed we filed a claim for that and got a whopping $600 in compensation. Now, if we were to file a claim for the lightning striking the AC, they would frown on it and raise our deductible to high heights, and "consider opting for non-renewal." Then, if for some reason our house burned down, or we were robbed, or whatever, in the ensuing couple years, it would be our third strike, they would kick us off their plan, no one else would take us, we would be uninsurable and completely f**ked. 

Apparently they don't want to insure people like us, who are plainly bad luck. They only want to insure people who are good luck. Like we used to be, while we were paying premiums for 14 years and never filed anything whatsoever.

Anyway, Ben comforted himself that the AC unit was incredibly old, nearly 30 years, and nearly dead, and that the lightning strike was just happenstance. We decided to replace it, but I thought it was worth getting a couple other opinions on the matter, and other bids, seeing as this was a major purchase. Enter Scott, the stunning young man from Broadview Heating and Cooling. He came along, with his twinkling blue eyes, touches of ink, and mega-watt smile, to see what he could do about the situation. His first step was to nearly get killed by a huge, visible arc of current that only narrowly missed his hand. Seems the previous guy left some high voltage wires hanging out in the open, where the kids could easily have grabbed them. (I'll show him lightning!) After not getting killed right before my eyes, Scott performed another miracle: he fixed it! It was not struck by lightning, he said, just incredibly old and nearly dead. But revived for the moment, so huzzah!

Until it died again shortly. I called them back and begged for Scott to return so I could see him again– I mean, so he could fix it.  However instead they sent Kevin, who, get this, was as handsome and amazing as Scott! Shaved head, a little ink, incredibly charming and off-puttingly attractive. I tell you, this is why it's dangerous to leave housewives alone all the time! Usually repair men are visually unsettling and plumber butt got its name for a reason. But these AC guys should be in movies, I'm tell you. Anyway, Kevin fixed it again and again said it was nearly dead. Their sales person called and made the case that we should replace both the ancient AC and ancient furnace at the same time, get the tax credit, get high efficiency everything, and just be done with it. Cost: $10,000. 

That was yesterday. Meanwhile, the garbage disposal has been on the fritz, causing all sorts of drainage issues in the kitchen. I called around and found that it's still covered by warranty, but that the special approved fixers can't come until next Friday. The lady said to take a broom and try to unjam it by turning it counter clockwise. I did this and got both the blades in it moving, reset the reset button and turned the breaker on and off several times. It did nothing. The tricky part was that I didn't tell Ben I'd tried all this.

So last night about 11:00 p.m., we were having a bad moment. Elias's sleep was all messed up, because he had succumbed on the way home from a long, fun day, at about 6 p.m., had no dinner, and then woke up at 10 p.m. hungry and ready to party. We were trying to get some food into him, and Ben had dropped a hot bowl of mac and cheese all over the floor. After cleaning that up and making Elias a hot dog, a rather cross Ben began to do the broom stick thing. This is where I came in. We were sort of having a spat about what was going on with Elias, and Ben was jamming the broom stick in there, when the whole thing just fell down. The garbage disposal came loose and fell into the bottom of the cabinet and water began to spread everywhere. Then the dishwasher, which was running, began to drain and it turned into something of a flood. Ben got a mop, I ran down and turned off the breaker again, the kids were running around trying to get in on the fun. And all the while, Ben and I were both feeling the same thing: NEED. SLEEP.

This morning, I woke to find the kitchen looking like a hurricane had been through. The cabinets flung open and stuff all over the place, the sink covered in tape, the dishwasher cold and full of dirty water and dishes. While taking stock of this, I got Isaac a glass of water. He dropped it. The glass shattered in all directions. We were both barefoot. I stayed in one place and sent him away from the glass to get me some shoes. He came back with Wellies. Which brought me to the moment this morning in which I was squatting in my pajamas and Wellies, picking up wet glass shards in the midst of a destroyed kitchen. The thought crossed my mind: Have we offended the gods in some way? Is this like, some kind of inverse relationship to my physical well being? The healthier I get, the more the house around me crumbles? 

I can't figure it out. I'll think about it while I take the semi-broken, falling apart house phone and try to reach a repair person who can come out on Saturday.  

I do not want to jinx it, but the trend lines are good. 

After more than two weeks of hardcore, no holds barred vacationing, I'm back home and doing pretty well. I went to vestibular therapy this morning after nearly three weeks away and the verdict is, "hey! I'm not half bad!" 

What we did included enough driving cross country with small children to make a grown man cower. It included heat, beating sun, humidity, various flying insects, rustic outdoor plumbing, grazing animals, Star Trek enthusiasts in full regalia, and many species of black and white spotted animals. 

This is to say that a so-called "normal" person would probably have come home a bit bedraggled, and I too, NORMAL as I am, did indeed come home a bit bedraggled. But I'll take this is as a win. I'm hanging in there.

My photos are temporarily lost, but will be retrieved soon and then I will post some of the highlights.

The itinerary was aggressive. Day 1, The boys and I set out June 24th on our own, feeling quite smug at the lack of men-folk to escort us. We drove from our house in Bath, Ohio, to the lovely mall-rich hamlet of Chesterton, Indiana. That was about six hours on the road and all went fairly well. We stayed at a place that had a lot of waterfowl outside on the patio, including a pair of mom and pop swans and their ugly duckling baby swan. 

Day 2, we picked up my long-lost Aunt Marilyn ( see this link for photos of her double wedding with my mom on 9/11/99) and her adorable little doggy Ping. Ping is a schipperke and really about the ideal dog. From his delicate little feet to his perky little ears, I loved this dog. He could dance! He could walk on his hind legs! He rode on a little silk carpet on Marilyn's lap from Chicago to my mom's farm near Wellman, Iowa. 

Day 3: Sweltering. It was the day of the great parade in Riverside, Iowa, Future Birthplace of Captain James T. Kirk. The kids were geared up for the parade, and Isaac kept referring back to an off-handed comment as to just exactly how big would a "bushel basket full of candy" be? For he was told that there would be candy galore. And indeed there was– for the kids lining the roadside. All the people threw candy from the floats, and the spectators just simply had to pick it up in great Halloween-esque sacks. But, even though he was cautioned that he would get a lot less candy if he was actually IN the parade, this was an opportunity too great to pass up. We rode on a big flat bed truck, adorned with a life-sized red-white-blue patriotic donkey sculpture, a live Great Dane with black and white spots, several other people, dogs, kids with bugles and bowls of candy and dog biscuits to toss to the masses. It was small town Americana at its best, only better because many people were dressed in their Star Trek uniforms, and one float (apparently missed the memo on the theme of the parade) featured Darth Vader and a team of stormtroopers wearing kilts on their lower halves. I nearly died of heat exhaustion, but otherwise it was great– and as a crowning glory our float won first place! 

Days 4, 5, 6: Hanging around mom and Max's lovely farm. The weather cooled off a bit and we attempted to make felt dog beds out of the mounds of sheep wool on hand. A relative failure. I had been warned that Jacob's Fleece would not felt, and this proved to be all too true. Also, they had a bronze pour at their foundry (max-cast.com), which the kids got to watch. It was very hot, loud, but exciting! And Isaac managed to make name plates for both boys in bronze. Other highlights included Grandpa Max's television debut as a bronze expert on the PBS show "The History Detectives." (The copperhead cane segment, Max is called Steve as that's his real name.) Isaac was very excited to get to watch the show with the star himself!! Also, Grandma Doris had a baby blue jay to feed, as well as her talking crow Boris. We caught a great bull frog in the pond. The boys got snuffled by curious horses and got to chase around a flock of about a hundred jacob's sheep. A word about sheep: they would swarm around our guest cottage at times, like the crack of dawn especially, and what struck me was that they didn't actually sound like real sheep. They sounded more like a group of people, large burly men and tiny children, all crawling around on their hands and knees and doing a loud fake sheep impression.  

Days 7-12: Minneapolis. We drove up there, the boys, Marilyn, Ping and I. Marilyn and Ping stayed with my aunt Judy O, and we went to stay with my Dad and Patty. There was had a nice, relaxing sort of summertime visit. The kids played in the wading pool across the street. We saw Toy Story 3 (good!). We went over to Nicollet Island, my native soil, and played in the Mississippi river. I had fun down at the old beach where everyone used to skinny dip. Elias soon got sopping wet and then stripped naked, so it was the next generation of nakedness taking over I guess. It was lovely to see that the old back water and current patterns haven't changed, that the railroad trestle people used to jump off is still there, although the log we always used to swim to seems to have finally gone south. I forgot how long it's been since I've been to Minneapolis in the summer– we've been focussed on the winter holidays for the last several years I guess– and it was great to be there when everything was green and lush, rather than frozen and white.

On July 3 Ben flew out. The timing was sort of weird, because we had the great fortune to get tickets to a suite at the new Target Field– new downtown baseball field that is pretty awesome. Ben's flight landed in the middle of the game, and he came over on the light rail. His pending arrival caused some angst– would he make it?? What inning would he catch? But it worked out fine, he arrived in the 8th I think. The extended family was together there and my brother made a joyous announcement that I won't share here in case it's not totally public. Also for some reason the Navy SEALS dropped on to the field by parachute from a very high plane overhead. The boys loved that part. However there was a great deal of crying and sobbing also, involving an altercation over cotton candy. Isaac actually was sitting under a desk and crying, while Elias, less shy about it, was actually screaming and kicking in the middle of the floor.

We had a good 4th with the perfect fireworks display in the park across from my dad and Patty's house. For me it was a migrainous challenge to some degree, what with all the explosions and bright flashing lights, but I also really enjoyed lying on my back in the grass, eating cherries, and watching the full scale peony pyrotechnics bursting right above me.

Ben had swooped in to help with the drive home. On July 5 we set out into the corn fields and dairyland. We stayed in Chicago at the de luxe hotel 71, right on the river, pretty sweet view. Also in Chicago, they had the organic restaurants I need to sustain life away from a kitchen where I can cook migraine-friendly food myself.  The boys took this all in stride. All things considered they are really good travelers.

And so… home. En route we got the call that Ben's grandmother, our dear Nana Joe, died. She was three weeks shy of her 99th birthday, and very ready to be done with life. We all knew this would happen sometime, but still it's always a surprise when it really does. In her case we had a lot of false alarms over the years, and in some ways her incredible durability started to create the impression that she was in fact immortal. She wasn't. She was a great friend to me over the last 15 years and I miss her already. Our casa blanca lilies– which she loved– are in bud and about to burst into full, white, fragrant, velvety flowers. They usually come just in time for her birthday, August 1st, and this time it makes both Ben and me melancholy to wish she had been here to see them just one more time. Isn't it always like, though? Life goes on for everyone else, and those no longer with us are bound to miss lots of great things we want them to see, things we want to tell them, or questions we wish we'd asked. 

I wish she was here to see the incredible fence, which Ben and his dad finished while I was gone. It's like an addition to the house, I feel. I'm planning the layout in my mind and can't wait to begin to move in. The Ruth Stout No-work Gardening Method ("for the busy, the aging, and the indolent") is said to take three years to settle in. I think that's about right. Three years from now we'll have an incredible garden there, full of raspberries and shallots and asparagus and basil, sunflowers and yellow pear tomatoes and shelling peas.

Even without all that, it's summertime and the livin is easy.  

The following might be a little garbled. This is sort of like drunk dialing, except the only thing I'm drunk on is exhaustion. I spent half the day at the Cleveland Clinic today– for once a good experience. 

The geneticist does not think I have Ehlers Danlos, or any other bizarre and rare disorder. She went through my family history with a fine toothed comb and found nothing that suggests it (no sudden young deaths, for instance). She looked me over top to toe and decided that while I'm bendy, I'm within the normal range of bendiness. She even claimed my elbows "don't hyperextend"! I said, "You don't call this hyperextending??" demonstrating my broken arm impression. She recoiled and nearly yelled, "DON'T do that!! It can really damage your joints." But how else can I show her…? Anyway, appalling as that may be, it's not part of a larger whole. Indeed, my litany of weirdness does not cohere into anything more than a litany of weirdness. And as for Isaac, she's not worried about him either.

Major PHEW.

We agreed indeed not to even bother with the blood test, as my clinical findings to her were conclusive enough. She did decide I should do the echocardiogram of the heart, and if that showed anything, THEN we could test for something more. (She raise a concern about a cluster of cancers on my dad's side, and so that's a loose end for later.) To my delight, I had no needle stick to deal with today. I just had the ultrasound of the heart which was totally fine, quick, noninvasive. The tech probably wasn't supposed to tell me anything, but she said that everything looked good there too. I guess I'll get the official word later.

So– I drove home feeling much lighter, feeling that I think I can finally close this chapter. I can say, "Okay, I'm basically a normal person who was slammed with some horrendous virus and will gradually recover."  That means, closing the acute phase and entering the recovery phase. And no more testing in the foreseeable future! 

Tomorrow I'm leaving with the boys for a major midwestern multi-state odyssey. In a Honda Odyssey, fittingly enough, that has just had every possible thing fixed and has been cleaned to unrecognizable spotlessness. I haven't ever taken both boys on a tour like this by myself, so this will be an interesting experience. We're driving to someplace Indiana tomorrow, sleeping in a hotel. Then picking up my aunt Marilyn near Chicago, and her little dog Ping, and driving onward to my mom's farm in Iowa. There we will enjoy… 100 sheep… 13 horses… two mini donkeys… a tame crow… a pond full of frogs and toads and tadpoles of all sizes…a giant black and white spotted great Dane… a possible treehouse building project… possible sheep wool dog bed felting project… and perhaps most importantly the TrekFest in Riverside Iowa ("The future birthplace of Captain James T. Kirk"). The boys will get to actually BE in the parade! Throwing candy to everyone and probably ingesting a bit of it too. There's going to be an attempt to break the Guiness Book World Record for most people in one place in Trek costumes. We won't participate, but it should be quite a sight to see them try. After all that we're heading up to Minneapolis for the 4th, where Ben will join us, and then back home.

Which brings me to the exhaustion part. Can I pull this off? It's just mind over matter, baby, mind over matter.  

This is it folks: the one-year anniversary of my new life as a part of the chronically dizzy community. A year ago at this moment, I was undergoing my first and only true vertigo attack. Perhaps by 2:00 p.m. (the current time) I had already made it home from the last-day-of-school picnic, and had completed the vomiting, and at this time was stationed with my head on the closed toilet seat, feeling that room was spinning violently in all directions at once, unable to move, while the children variously climbed me, destroyed the kitchen, and brought me snacks. 

So. What is there to say about this dubious milestone? I am making progress, gradual progress, but dizziness management is a major part of my life. I'm proud to say that I spent the morning running around doing last-minute errands like a normal person. And then just before I had to go and get Elias and bring the teachers their year-end presents, I completed the daring and fearless rescue of a tiny baby bunny that Bagheera was killing for sport. We have the bunny now, ensconced in a sparkling new critter tote. I put some vitamin E on his wounds and, so far, a few hours into it, he's apparently surviving fairly well. (So adorable!) (Probably the same dude we're going to great lengths to fence out of the garden!) 

 This is to say, SOMETIMES, I think about things other than being dizzy and dizziness management. 

Yesterday, I was at vestibular therapy, where I rode a stationary bike for five minutes with two people watching me, and the elliptical machine for two minutes while seeing stars. I did a tiny bit of pilates on the reformer, which I love not only because I used to do pilates classes regularly, but because I can be horizontal so I don't have to try to exercise while also coping with the pesky forces of gravity. They very kindly draped a sheet over the top of the machine, like a canopy bed, so that I didn't get hopelessly dizzy due to the moving lights on the ceiling. My balance was for shit– tipped over after about four seconds, eyes closed. Eyes open, after several tries, I made it to 22 seconds.

AM I making progress? Sometimes I feel sure that I am– I think, Hey! Look what I did today! Other times, I have to wonder. That can get disheartening.

I read someplace that if your POTS is caused by a virus, you can expect a slow recovery over 2-5 years. So, if that's the case, then I'm only a year into that process.

Other times, I feel quite normal and I think– What is normal anyway? How will I know that I've attained it? Will I even recognize it anymore? Am I here now? Ben pointed out, "Honey, your balance really never was all that great." True! 

On June 23, I'm going in for this echocardiogram of the heart and genetic work up. Will this shed any light on the matter? Or should I just forget it? Sometimes I think I should just give up on trying to figure out WHY this all happened. I think, Okay, clearly something bad happened to me last June, and clearly something is very gradually getting better. We're closing the gap between this and normal life. What is gained by any further investigation of it? And for each appointment, I decide, THIS will be the last one and that's final. And then, once again, that appointment leads to another and the cycle repeats.

This time, I'm actually driven by concern for Isaac. If I have something genetically wrong with me, maybe he has it too, and therefore it would be good to know early in his life so that we can work with it better. (I don't think about Elias in this matter, because he doesn't have the red flags that Isaac does.)  

In the meantime, I'm what I would call moderately impaired. Not terribly so. I just have to lie down a lot and rest a few times during the day. I have to hit my numbers every day of two liters of water and two teaspoons of salt. I have to watch possible migraine triggering foods, with still quite a long list of problems. I have to wear the damned support stockings as much as possible. Today I'm not because I got poison ivy on one pair, and lost one half of the other pair, and so this morning I was at an impasse. Also it's so warm today, I just would rather not. But I do feel it. I feel my blood being somewhere else, get light-headed at times, and notice the tremendous effort it takes to do simple things while fighting that negative blood flow all the time. But not falling– not that bad. No "sudden loss of posture" where I'm choosing suddenly to lie down on the kitchen floor. That used to happen way too often and not anymore. 

The Cymbalta seems to be great. I feel that all the start-up issues are resolved and now I just take it to feel as close to normal as I can. Food issues, too, seem to be getting better. The other day I inadvertently ate some raw onions, which were hiding in something I thought was safe– I did feel it. I felt strange the whole next day. But still functional. I mean, I wasn't confined to bed from it. I still did the day.

So. Progress. A year later I have a much better grasp of what is wrong with me. I feel that in Vince and the neuro I have a good team who understands me, works together in a coordinated way, and is actually reasonably effective at bringing me ever closer to normal life. 

A year from now, I certainly hope that this is all a distant memory, that I can look back and say, "Boy– that was a tough year. I'm so glad it's behind me."  

Is your brain a hottie or a nottie? Unlike most people, I have the answer to this vexing question. 

I returned triumphantly this week to vestibular therapy. I'm in a whole different place now than I was when I left six months ago. (Has it been that long??) Now I'm settled into my diagnosis as a migraineuse with POTS, and I really think the Cymbalta situation has finally hit its stride. What I didn't know when I left vestibular therapy back in early December was that the neurological god had written a letter to my beloved Vince (vestibular therapist), explaining why I had to stop coming to see him so abruptly: "She has a very hot brain," he explained.

What does it mean to have a hot brain, you ask? Well, I gather it means something like "inflamed" or "hyper-reactive" or "on high alert." Thus innocent sensory inputs such as slightly unfamiliar shoes were overwhelming my balance systems with information overload. And even a single daily cup of black tea, tablespoon of peanut butter, and half-ounce infusions of chocolate were putting me in a permanent state of endless migraine dizziness. No wonder my life sucked so royal!

Now the Cymbalta seems to have entered a new phase. It's taken a month to settle into the new dose, but I feel as of the last few days that the fog I've been floating around in is finally lifting. And more so, I'm starting to feel that the drug is really making a huge improvement in all facets of this weird ailment.

I found this on the POTS page in wikipedia:  

Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs) such as Prozac, Zoloft, Celexa, Lexapro, and Paxil, can be extremely effective in re-regulating the autonomic nervous system and raising blood pressure. Some studies indicate that serotonin-norepinephrine reuptake inhibitors (SNRIs) such as Effexor and Cymbalta are even more effective. 

But not only is it re-regulating my autonomic nervous system (the part of your brain that controls all your background functions) AND raising my blood pressure, it's also balming those sizzling nerve endings in my brain such that I can tolerate a slight cheat on the migraine diet. Exhibit A is that this week I finally cracked and had some carrot cake– although it was all natural and pure as the driven snow used to be, the bad list items included pineapple, walnuts, and a few stray raisins. I snarfed it down and waited for my punishment. Nothing! I got off scot free! This really cheered me up a great deal. Also, I must say that I feel sort of like I'm functioning almost normally in other ways– not keeling over midday into a hopeless stupor, for instance.

When I walked in to Vince's office the other day he said, "You look great! You really look so HEALTHY!" This surprised me to hear, as I've been feeling that the six-month exercise ban has taken a toll on me and then some. But I said that while my blood pressure still drops at times, the Cymbalta seems to put a more reasonable floor on it. "You must have been really fighting that all the time," VInce said. "It really must have been taking a lot out of you." Yes, and now that it's not like that… how much easier everything is!

Our hope is that Vince can put the kaibash on all these headaches that have been such a hassle lately, quell the arm-shoulder ache, figure out why I wake up with numb hands, and finally bridge the gulf between my decrepit existence now and the Pilates and yoga studio gym rat I would like to be. Much of this project is about my neck. Apparently my long neck and wobbly joints are not a good combination with muscle weakness and various nerves are getting mashed or messed with in there. Within about ten minutes Vince was able to reduce my headache. He gave me one neck stretch to do for the arm/shoulder ache (apparently nothing to do with my actual shoulder, but referred pain from my neck), and another one to do when a headache seems to be coming on. Guess what? Totally worked!! I've been headache free since I saw him on Tuesday!

Also he's helping me to begin exercising again– under the close scrutiny of people who know a lot about POTS and how it works. He agreed with me that the cardiologist's exercise ban was nigh unto a death sentence and totally unworkable. He said lots of doctors, my neuro included, think the exercise actually really can help with POTS. But you've got to be careful– so on Tuesday I rode the stationary recumbent bike for six minutes– with two people standing there and watching me intently. Today I was there again, and while I only had one person watching me, I was only allowed to ride it four minutes. (I did get light-headed with the six, so they scaled it back.) 

I sense this is going to be sort of a long slow process.

The good news is that I didn't lose all my muscle strength in the intervening months. Apparently doing things like lifting a 32-pound sleeping child and carrying him and two backpacks into school helps maintain my upper body strength. My personal stubbornness has also been an asset. I've simply refused to throw in the towel and devote myself to being a full-time sick person while someone else does all my work. "The way you live your life is really helping you," Vince said. 

This brings me to the garden project Ben and I have embarked on. It's really seeming quite epic– fencing in a 30×55 plot with cedar posts and entrenched 1×2 inch welded wire. Ben rented some serious equipment last weekend and wallowed around in the mud struggling with it, while I rather helplessly provided moral support, refreshments, and light errand-running. Ben's dad gallantly came up and helped a bit also. After a long and exhausting day with this project, Ben and I were sitting at dinner and I tried to explain to him why I want and need to do this despite my obvious infirmities. I told him that the garden is a monument to good old American optimism. It's a gesture of hope– I WILL be well enough this summer to be out there gardening. The kids and I will grow things and stir compost and watch bugs and learn where food comes from. This is our summer project. I can't set the whole plan aside in anticipation of being sick– can't and won't. I plan to be well. If I do end up too sick to do anything, and it becomes a sad jungle of weeds, okay. So be it. But I won't approach this summer with that in mind. The plan is to be hale and hearty. Ben understands this and bless him– he's really working his tail off to help me.

I'll post some pictures. It really will be wonderful. Spring has sprung and I am on the mend.  

I spent half the day at the Cleveland Clinic yesterday, getting poked and prodded and twisted and pulled. This is all part of my on-going research as to what the hell has happened to me in the last year and why am I so strange as a general rule. In order to catalogue my strangeness for this doctor in vascular medicine, I made a list of it. Starting at the top, I have or have had:

• three episodes of collapsing in the sun
• one vasovagal episode in which I collapsed in the shower the day after I gave birth to Isaac
• TMJ
• sinus malformations
• deviated septum
• 8 wisdom teeth (hence, twice as wise)
• hiatal hernia
• chronic GERD
• gall bladder removed
• bicornuate uterus
• 5 early miscarriages
• 1 22-week preemie lost to chronic placental abruption
• 2 high risk pregnancies that made 36-37 weeks, delivered by c-section due to transverse breech position
• hyperextending elbows 
• bendy fingers
• hyperextending knees
• sore hips
• sore knees
• chronically dislocated lucky toe
• painful toe joints
• torn ligaments in ankle

Isaac's still fleshing out the details, but looks like Santa will have some serious work to do this year. Isaac intends to ask him for the powers of a given super hero, to be determined. I pointed out that this would be a tall order for Santa, but Isaac scornfully replied: "No it's not! It's just a PILL!" 

Just a pill that will give you the powers of, say, Aquaman. Isaac spent a long time honing The Plan. We would have to work on The Plan quite a lot. For instance, think about it, Aquaman can only be outside the water for one hour. So .. hello… logistics! First off, Isaac's room will have to be transformed into a huge aquarium, requiring tons of sea water, other sea life (non-dangerous at first, moving on to dangerous as Isaac hones his telepathic skills), and some sort of entry/exit process for the non-gilled members of the family. This will require steel beams to reinforce the floor of our 175-year-old log cabin– sturdy as it is. Soon, Isaac had branched The Plan out to include sort of a spawning system with a tank in the living room (holding trout or salmon), and a waterfall coming down the stairs, which they would swim up against to the upstairs hall. Isaac gestured to the carpet. "All this will have to be replaced with coral," he explained. We discussed the idea of having an estuary between the top of the stairs and Isaac's door, where the sea water and fresh could mingle. "There's going to be a LOT of dead trout," Isaac warned. "They die and then the babies eat their decaying matter." I pointed out that this might smell a little bit bad in the living room, but Isaac was dismissive of my concerns. "Nah– we'll have a lid on it."

Then there was the school problem– with 20 minutes transportation time each way, that would leave Isaac only twenty minutes of his one land hour at school each day. Although this idea appealed to him, I felt that he needed a way to be in school a full day– I suggested sort of a reverse scuba tank, full of sea water, that he could carry on his back. "Why don't you do something like the mudskipper?" I asked. "They just have pouches of water they carry over their gills!" Isaac retorted. "Exactly," I said. "Why not do something like that?"

No– he wanted a flexible rubber bubble that he could effectively live in. It would have to be clear, and it would have to be flexible enough to go through doors and such. He could run in it like a hamster in one of those hamster balls, or swim as it would of course be filled with water. Also, the car would have to be refitted– maybe with some sort of water-filled dome on top?

I worked through a lot of the details with him, adding the little bit of fine print that we wouldn't actually start the modifications until AFTER Santa delivers the pill and the powers are bestowed. This minor caveat gave me all the cover I needed to work through the Plan with him without fear of anything actually happening. (Cue images of coming upstairs to find that he's flooding his bedroom to get started..)

Now, just when I thought we had a good working blue print of the modifications, he's started to waffle on which superhero he should choose. For a couple days there he was pretty keen on becoming the Red Tornado. All we would have to do then would be to create a "tornado habitat" in his room. Line it with something like whatever they put inside wind tunnels? At the moment, though, he's considering the pros and cons of shapeshifting powers. I said, "You mean like Beast Boy?" He said, "But Beast Boy can only change into animals." Hm. Not good enough. "You mean like Kevin?" (Kevin on Ben 10 can turn into rock, metal or wood, if he touches these things.) "No… that's not that helpful." So. We're going to need a superhero whose powers Santa can condense into a pill, and who can change into pretty much anything. (Odo from Deep Space 9?) And then, and only then, we'll make an environment to suit that creature.   

I started the double Cymbalta on Saturday (from 20 to 40). I expected that it would make me groggy at first, and indeed I spent all day Saturday flat out in bed. I slept, and hazily watched things on the computer. (On my new Air I can get those Netflix "play it now" things to work, and so suddenly the entire world is at my fingertips.) Sunday, slightly better: I only needed to sleep for three hours in the afternoon. Obviously I did this over the weekend on purpose so that Ben could herd the children while I went into my special haze. Monday I had a bad afternoon trying to manage Elias while totally grogged out. Tuesday, down to a one-hour nap. Wednesday, just a half-hour lie down without really sleeping. So… the trend is good. Today let's see if I can go straight through.

But now I'm getting a cold, and it's clogging up my ears and making me dizzy. At the same time, my druggedness is making me feel just hazed out. Like I'm content to sit and stare at nothing for long periods of time. It's sort of like being in an opium den in that it's relaxing and rather pleasant, but the laundry does tend to pile up in cases like this, and getting dinner on the table seems to take extreme effort. I wonder if it's more like this for me than for others because I already have certain genetic proclivities for sitting and staring at nothing?

In any case, I'm hoping HOPING that soon I will get my footing with the new dosage and will begin to function normally with less dizziness and no headaches. I think in retrospect that I was consuming small amounts of supposedly safe white chocolate each day, as not-too-effective compensation for the dark chocolate I can no longer rely on as mother's little helper. However, I was finally forced to face reality. I think white chocolate gives me bad headaches and I have to stop. Is there nothing I can eat in this world?? ANother example, I have been under the impression (from my migraine bible "Heal Your Headache" by David Buchholtz) that nuts were bad and seeds were okay. So I made a lateral move from peanut butter to sunflower seed butter when this all started. Then just recently I noticed that the list the neuro gave me had both nuts and seeds on the red light list. Suddenly I had to question the firmament. And while some lists say to limit fermented dairy (e.g. yogurt) to 1/2 cup a day, other say all dairy must go! Thus I am back in the frustrating position of fearing all food and trusting nothing.

On plus side I tried a small amount of lemon juice the other night and seemingly was fine. If I can have a little bit of citrus, cooking will be a lot easier.

Oh, well. This is the sort of thing you have to deal with as a bona fide migraineuse.

Have I mentioned how cute Elias is lately? He has the sweetest speaking style. He can't do consonant clusters at the beginnings of words, and he can't do the "g" at the end "ing" words. So something like "swing" will come out "fin." ("I wanna fin, fin, fin!") And "wing" is "win." The other day he was saying, I thought, that with his flashlight he would "look tough." But when I repeated that back to him he only got mad. At a stop light I turned around to see if I could figure out what he was talking about. He was licking the flashlight, and saying he could "lick stuff." So pleased when I understood. Another thing he does is explain something to me, crossly, because I'm dense, and then ask, "understand?" But he says it "UNNERTAN???" So now I say then when I explain something firmly to the kids, "UNNERTAN??" It's a good final punctuation mark at the end of any statement.

And the garden update. … To fence or not to fence? WIthout a fence, surely critters will come and eat everything. From tiny moles and voles, to rabbits, groundhogs, and on up to deer. Almost to the point that planting anything without a fence is an exercise in futility. However, the DIY fences look lame, look temporary, tend to tip over here and there, and are unattractive. Bt I suppose they work. Then again, I had a real fence guy out here this morning to give us an estimate on a nice, solidly built split rail fence lined with wire and a beautiful picket gate. This would be wonderful! And a permanent part of the landscaping for years to come. But, oh, oh, it's COSTLY. Really costly. This is the dilemma of home ownership. Yesterday, biannual septic pumping. Today, fence estimates and stump grinding. Gotta get the car door fixed and the pergola repaired where a tree crushed it. 

I guess even though I do feel in a drugged out haze, things are proceeding apace anyway, except the laundry, which, like the universe itself, seems to be infinite.

Isaac has become a real reader lately. Just the other day he called up his friend Jens, and worked on his important DNA research on the phone, a continuation of their schoolwork. He read the page (which I found for him, something about science questions answered for kids) containing all sorts of useful information about DNA. He's cooking up a scheme, and needs to do his important DNA research as a part of it. I just got an inkling of the scope of the scheme the other day on the way to school. He began questioning me closely about DNA. Within just a few questions, I was out of my depth. Then the questions began to circle around a central theme: can DNA be injected into a person, and if so, will that person then take on the traits of the added DNA? 

This was pretty technical for me, but I talked about Dolly the sheep and the cloning process, and genetic modification of corn and strawberries, and other odds and ends I could think up. It was only almost upon arrival at school, a full 20 minutes into the conversation, that I grasped the scope of Isaac's plan: he would ask Santa for a DNA-transfer machine, and become half-human and half-something else. (He has the utmost respect for the power of Santa.) The only matter to be determined in his mind was what– which creature's DNA should he have transferred in?

He was leaning towards spider– I mean, climbing walls, making webs, having venom, all this would be pretty cool.  But, let's face it, it's been done. Hello? Spider-man! This is well-trodden territory. I dropped him off at school, still puzzling over the best choice. 

When I picked him up seven hours later, I could see that he and Jens had been discussing this during every free moment of the day. (It's a Montessori school, so they have some flexibility, but they have tons of work to get done so can't sit there chatting the whole time.) "Mom," he announced. "I need an animal that can swim, go on land, AND fly. I need all those powers. What can do that?" This stumped me (if you have any suggestions, let me know). I said, "Well, in its larval stage a dragonfly swims under water. Then as an adult it can both walk on land and fly. Will that work for you?" He pondered. "Hm. That just might work. They can fly really fast, too! They can catch other insects right out of the air, and they can hover. Yes! I'm definitely going with dragonfly."

That settled, he moved on what Elias should choose. It seemed sort of like handing him the sloppy seconds, but Isaac tossed him the idea of being half-spider. Elias was delighted with it– only impatient. "Can I do it now?" he wanted to know. Alas, Christmas is months away. And last time I checked they don't sell DNA transfer machines at Target.

I'll never truly understand how these little minds work. Isaac has a couple unshakable convictions– that girls pee out their butts, for instance, or that boys carry extra urine in their testes. I try very hard to straighten these things out, but so often I don't even know that he's thinking something so far afield and so I can't correct it.  A few weeks ago Ben had a meeting or something and so the boys and I were out late a dusk taking Lena around for her last potty break of the night. We came back in and took our boots and coats off, and then Isaac started saying, "There's a sign out there in the woods that says Grendel might come here." I said, "What sign?" I had no idea what he was talking about– although he went to see a children's play adaptation of Beowulf not long ago and I think it really left a lasting impression on him. 

"There's a sign– out in the woods. I says "Grendel Might Come" or something like that. Wanna see it?" From his expression I could see that this was pretty important to him and after a little back and forth I could also see that he really wanted and needed to go and check it out right now. It was pretty near pitch dark by then, but we put our boots and coats back on and ventured out in the woods to see what he was talking about. He brought Elias and me down the driveway and off a little ways, and there was a sign post sticking up. It was like a utility marker of some kind. I couldn't read it in the dark, but I could see basically what it was. "Oh!" I said. "That's not saying anything about Grendel. It's just saying there's an underground gas line or something like that here, so you can't dig here or you might hit it."

Relief swept over Isaac's face and body. I could see him suddenly relax– "I'm so happy!" he said. "I really thought it was a warning about Grendel."

"I'm so glad we came out to check, Isaac. You did the right thing to ask about it. I would never have guessed that this was scaring you in a million years." We walked back to the house talking about it. How could a creature, that wasn't real in the first place, and if it was real lived thousands of miles away and a thousand years ago, come here, and indeed come here so often that the local authorities put up a sign to warn us about it? But that's not the point. The point is that the sign terrified Isaac, especially since he could only read part of it. The part that said DANGER and the part that said Gr– ("underGRound cable," as it turned out).

I guess the other point is that I'm very happy that he trusts me as a source of information about these important matters. Although when I tell him that Santa can't bring a DNA transfer machine, he just says I'm wrong. 

Here in opposite world I'm barred from exercising and force-fed salt. It's pretty weird. I was driving along the other day and they had this radio program about how to get salt out of your diet. People were going to extreme lengths, I thought, infusing broccoli with red wine and herbs, and that type of thing, to make people eat it salt-free. Callers were asking how they could avoid salt in this or that form, and I thought it would be funny to call in to say that I have a 5 gram a day salt minimum and for me, salt is not the devil. But I didn't– I'll just head to the POTS support sites and find out those useful tips on how to not pass out in the shower and how to ingest crazy levels of salt.  

At the same time, I decided to call up my old trainer and set up a very gentle, tentative exercise program, reset for my new geriatric lifestyle. I talked to her for a while and gave her the run-down on the situation. I said that the cardiology department was hysterically opposed to my exercising at all, which I could tell worried her. But then I added the my neurologist was okay with it, indeed didn't see any reason why not. So she said, well, just call and find out if there are any specific things he wants to restrict. So I called the neuro's nurse Ivy and explained the whole thing. To my surprise, she said NO. She said, "No– do not exercise until the dr. examines you again." I said, "Examines me in person or just can we talk on the phone?" She said, "He has to examine you in person first." I stammered, "But- but– he seemed okay with it when we talked in March, and he examined me then." She said, "No."

Okay. So… I'm going up to the Clinic again on May 12. Partially to find out once and for all whether I do or do not have Ehlers-Danlos Syndrome (hyper-mobile joints and overly stretchy everything– including veins– due to a genetic collagen malformation). If so, this would explain pretty much every health problem I've had my whole life. But we'll see about that. After that appointment I'm going in again to see the neurologist and go over this exercise issue (meantime my fitness goals will have to wait!) as well as what is up with all these horrible headaches??

I've never been that big of a headache person, until the last couple months. So… is the Cymbalta causing them? Or is it a virus of some kind? (Ben has them too!) Or is the whole migraine syndrome coming into a new phase? Last Friday I had a severe, almost crippling headache in the afternoon. I took Aleve, which I sort of hate, but which is the only over-the-counter I can use with the Cymbalta. I still felt pretty bad, but I had to rally and take the kids to a major birthday party. Ack. This involved a challenging environment indeed– a pool party, with a large pirate ship spouting water, a huge curly slide, a sort of a din of machines and screaming children, splashing water, fumes of chlorine, weird lighting, excessive heat– basically a sensory overload on every level. (Let me pause here to mention that from the vantage point of the kids this was TOTAL JOY. They had a blast and came home– not just tired but actually sound asleep.) I struggled through it, and did okay. I even made it home in one piece, although I had to lie down upon arrival. I went to bed and assumed I had made it scot-free. However, the next morning, I was slammed by a real migraine attack– not a headache, but acute sensitivity to all input, and dizziness galore. I went to bed in Elias's room because our room was way too bright, and there had to cope with stickers on the walls and patterned sheets. It's just the feeling of needing to crawl into a dark, silent hole, and stay there for several hours until it passes. 

I came out of it eventually. And thank god it was Saturday and Ben was home to herd the children. (He's having so much fun with his gas-powered lawn and garden tools! New tractor/mower, new power leaf blower, new chain saw! Oh, yeah, he's going to get this yard under control! It's fun to see him so happy. He was out there last night, mowing the lawn in the dark with the headlights on. And to think I was worried that he wouldn't get around to it.) I felt like a wet dish towel all weekend, though. On Monday I called the dr to tell them what happened, and Ivy told me that the change in the weather had set off migraines all over the place over the weekend, and that the switchboard at the migraine clinic was lighting up like crazy. I reviewed my recent dizziness problems, and found that — hey– they were all on rainy days. I've never made this connection before.

We spent a week in NYC at the end of March. I did pretty well overall, with only two days out of seven marred by dizziness. One involved walking across Central Park in the rain. I was getting dizzy as we went, and then when we arrived at the Natural History Museum, I found that I was standing in a huge line, in the rain, on stairs, and really very very dizzy. I had a horrible time there– it was packed because everyone had the same idea of going there to avoid the rain. Elias kept running off, and I was staggering around from bench to bench. I'm telling you– museums are just horrible for me. They really are. Why do I always forget this?

Anyway, so now I'm eying the weather report with concern. Today it's 75 degrees and beautiful, but storms are coming through. Tomorrow it's supposed to be 40. Does this mean I'm in for it? As a response to this problem, the doctor is upping my Cymbalta from 20 mg to 40. I'm starting the new level tomorrow, Saturday, in case it makes me hecka drowsy at first. Still this is a "sub-therapeutic" dose (that would be 60-90), and I hope we don't have to go any higher. But I also hope that stepping it up a bit will block out this sensitivity to everything and I will be able to head into the spring full throttle.

The garden is really going to be excellent this year. We have flats of seeds getting so big I've had to repot the pole beans and the pumpkins. I actually planted the peas outside, risking a late frost as well as deer and bunnies. I've been digging up and potting all these errant strawberries, to move them into their permanent home. Ben used his powerful massive leaf blower to clear a ton of leaves off this wooded hillside into the garden plot. Then yesterday our wonderful friend Dean came and tilled it, tilling in all the leaves into the clay and sand soil. Now it's stunning, a blank canvas of nice even soften dirt. Next week I'm meeting with the fencing man to see what we can come up with. I want to keep out the critters, but I don't want it to feel like a prison inside the walls. I think there's a beautiful fencing option that I want to see if we can afford. It's like a paddock fence lined with wire that you can't really see. I'll post some pictures when I can. (I wish I had taken some when it was just a scraggly mess full of sticks and saplings. It looks so amazing now, and we haven't even really gotten started!)

Also today there's this lady coming over to look at the site for our new bird and butterfly garden along the garage. I bought this at the school auction this spring, and am really excited to see what she will come up with.

So all this is good. The huge bradley pear outside the bedroom window is in stunning full bloom. This morning I literally saw a robin feathering her nest. It's spring– and even in opposite world this is a beautiful thing.