Fine Young Fauves

Hello, I have radioactive blood! It doesn't glow, though. I checked. I have a little wallet card for Homeland Security that tells them the date and the amount I had, with the line at the bottom: "The radiation is allowed by NRC medical use regulations and poses no danger to the public." I have to carry this for three months, in case I set off any of the ultra-sensitive radiation detectors in airports or federal buildings. So I am now a card-carrying member of the radioactive blood community, which I think is otherwise limited to mutants and superheroes. 

After a pre-dawn journey through rain and traffic, I arrived at the Cleveland Clinic this morning bright and early. I was not feeling all that great to start with, due to hunger and lack of electrolytes (I had to fast for the test). But I was greatly cheered to be greeted warmly by nurse Mary, who was the boss lady nurse at my tilt-table test a month ago. The preliminaries were quite brief– and I had, as instructed, worn comfortable clothes with a short-sleeves shirt, such that I was allowed to keep them on! (A small humanizing note in a less than humane experience.) Furthermore, Nurse Mary got me as comfortable as possible in a very skinny hard bed, with a pillow under my head and knees and blanket over me, and a heating pad warming up my arm. Also in the room was Nuclear Tech Bobby (Roberta), whose bedside manner ranged from cold to openly hostile.

Luckily I dealt with Mary most of the time. And Bobby, for all of her brusqueness, got a gold star from me for finding a vein and placing the IV on the first try!! This delighted me no end, as indeed the IV-placement part was the part I dreaded the most. WIth that behind me, I felt that the rest was likely to go smoothly. Before they began, Mary asked me if I had any questions. I said, "Well, the brochure says this is safe, but can you just go over that part again?" She smiled and said, "It's safe," with such a firm and decisive tone, in such a kindly sporty grandmother way, that I believed her. (I think nurse Mary is about the ideal nurse, and her apricot-dyed short hair with white roots, and her no-nonsense nurse shoes only endeared me to her all the more.) 

I think it's safe because the dose of radioactivity is extremely tiny. However, yesterday's front page NYT horror story about mistakes in radiation treatment made my hair stand on end and worried me a great deal in the lead-up to this.

Anyway, before long they started putting stuff into my veins. I learned that they way the test the blood volume is to add radioactive iodine to your blood, and then after it circulates take some back out and measure the dilution. That way they can calculate how much blood you have over all. This is a lot easier than the way I thought they would do it– take all your blood out into buckets and measure it the old fashioned way…

I did feel pretty weird through a lot of it. Tired and sort of spacey. Now and then I saw pretty green lights converging at far away points inside my dark eyelids. I often felt very sleepy and tingly. They pulled out what seemed a huge number of vials of blood, I think around 30, but apparently I could spare it and I'm doing fine now without it. I noticed that a few of the vials got put in special plastic envelopes with the big orange radiation warning signs on them. Yep. At one point Mary and Bobby got into a very tense altercation about the timing of a certain draw. Apparently Mary had drawn it before Bobby felt was appropriate and they got into a spat right over my head. Really, I felt Mary was in the right and Bobby was just going around with a major chip on her shoulder all morning.

I had expected it to be scary an unpleasant and probably painful, but instead what I discovered was that it was rather boring. I sort of wished for an iPod or something as I just had to lie there in the basically silent room, silent except for the tapping of keys and the hum of various machines.  

When it was picture time, Bobby brought this huge round machine way into my personal space until it pressed firmly against my left side. It had a large disc with a red X in the middle, aimed more or less at my heart. She told me to  lie very still for 12 minutes and to not hold my breath, breathe too deeply, or move in any way. We went on like that, but since the looming machine didn't make any noise, I sort of forgot about it. I mean, I was lying there for two hours and my attention did wander at times. Unfortunately, I had a run-in with Bobby myself after the first round of pictures. She said, "You can move again now." And I thought– holy shit! Have I been sitting still here or not? Because I was totally spacing out. Bobby said, "I'll just take a look at this first round of images and see if we got what we need." 

I confessed, "Okay, great, because I'm afraid I may have jiggled." Bobby stopped in her tracks and came over to me.

"What do you mean, jiggled?"  By her tone I could tell that she was pretty pissed, so I started back-peddling.

"I don't know, maybe just shifted my weight or something." And I'm thinking– crap– did I sit still or not??

"Do you mean shifted your TRUNK? Because if you shifted your trunk, that's going to really compromise my data."

"Um… no, no, nothing like that. I just … don't know if maybe I moved a little bit."

"Because your trunk has to remain COMPLETELY STILL. Understand?? STILL!"

"Okay, okay, I'm sure it's fine. I just… wasn't sure for a minute but now I'm sure it's just fine. I really don't think I jiggled at all. I've just been lying here and…"

"Because if you moved your trunk, I mean, all the data will be worthless! So you have to keep still… especially your trunk." I sensed that she was actually clenching her fists over me and winding up to strike. With this I resolved to never tangle with the evil Bobby again.  And for the next several endless 12-minute takes, you bet your britches I was still as the grave! 

(I read online this post by a fellow POTS sufferer who had been beset by restless leg syndrome during the hemodynamics test, and although it's an international support group online, this guy had actually been at the Cleveland Clinic for it. And he was really upset… I'm pretty sure he had to deal with the wrath of Bobby himself, poor man!)

Eventually I was done with the hemodynamics lab, and sent next door for the Autonomic Function Testing, what they called the Heart Rate Variability Test. Good nurse Mary brought me some cranberry juice and crackers to have between tests, and so I had a little snack while talking with the autonomic testing technician, an older gentleman named Ray. I will say that Ray was also a grandfatherly presence in a good way. He had a good balance of straightforward, but not cold, as he explained the testing plan. He was tall and lanky, with a gray fringe of hair around his bald pate, and the most remarkable, protruding Brillo-like ear tufts I've ever seen on anyone. Ray explained that the test was in three parts, just lying down and breathing for most of it, occasionally sitting up and breathing, and breathing into a little device. The test would monitor my reflexes and see whether my autonomic nervous system (how my brain was controlling my heart and so on) was working normally. If I passed the first part of the test normally, I would be free to go, as parts two and three were only to investigate any abnormality they might find.

He had the radio on, so as I went through this test I had a chance to review some great pop hits from my high school days. There was "Take Off, You hosers!" and of course the vegemite sandwich. All I had to do for most of it was lie there with my chest covered with EKG monitors, a big breathing monitor around my waist, blood pressure cuffs, one normal sized one on my arm, and one tiny one around one finger. All this went fine until he asked me to sit up and true to form I nearly blacked out. But I got it together quickly and we were able to continue. Just as I sat there for a five-minute silent monitoring of my vitals, I found myself to be facing a big landscape photograph of some mountains and a river at twilight. At that moment, the radio changed to a lone female voice singing amazing grace. I felt that I was now in a made-for-TV movie, mother of two draped in medical wires. I listened to the entire song as Ray stood there quietly watching the clock and all the monitors. 

Then I had to lie back down and breathe into this little tube, keeping the gauge at a certain mark for 15 seconds. It was sort of hard and made me light headed. But the upshot of it was that I was normal. Ray said, "This is a hint: you are free to go." I said, "You mean I passed? I'm normal?" He said, "Well, I can't tell you that. But I can tell you that I don't need to do any further testing today, and so that's a hint." He smiled at the cat and mouse game of it as he undid all the wires and unstuck all the sticky pads that were all over my "trunk" to use Bobby's term.

So.. I was free to go. I was glad to have passed the autonomic testing with flying colors, because, although this is not based on facts so much as intuition, I would rather not have that. I feel that Western medicine is better at dealing with mechanical problems of the human body, rather than the mysterious chemical and electrical processes of the brain. So I'm pulling for some sort of blood-related problem, rather than a neurological one. Anyway, I felt sort of woozy, starved, and thirsty, but I had brought a snack that was migraine-friendly. After some nourishment I drove myself home, whereupon I slept for two hours. (Ben took the day off work to cover for me.) 

Now it will take 7-10 days to get the results. So now, on with Mothering While Dizzy (MWD) as we wait for what I hope will be the denouement of this story, the cause and the cure revealed!

Commence waiting on my mark.

Here's something to brighten a rather dreary, cold Sunday in January. Simply put on a classical music station, engage in two 1-2 hour phone conversations, stay in your pajamas until 3:00 in the afternoon, and make yourself a batch of these babies.

 These are from this stunningly beautiful food blog called 101cookbooks. In fact I was so taken with this blog and the lovely photographs that go with the recipes that I rushed over to amazon and bought this woman's new cookbook. Her name is Heidi Swanson, and cookbook is Super Natural Recipes. As for the cookies, I did not make mine as tiny as these. She wants these basically the size of milk duds. (I made a sample to see just how tiny it was.) I do see the point of that, to make them like little buttons, but even as smallish-normal sized ginger snaps, it's pretty labor intensive.

Now, if you have migraine, leave out the lemon zest. I left out the star anise too just because I didn't have any, but I'm sure it would've added even MORE je ne sais quoi. Even without those two items, though, these are the ideal, crispy, chewy, spicy ginger snaps. Eat them warm with a glass of cold grassfed milk.  And I quote from here on out:

Triple Ginger Cookies

Feel free to use all-purpose flour if that is what you have on hand. Again, in regards to the ginger – mince it as if you were trying to turn it into a paste. Two sugar coating. In my most recent batch of these I used a big, flaked, smoked sea salt along with sugar to finish the cookies, so that is something to experiment with as well, but totally optional. I grind whole star anise in my spice grinder and then do a bit of sifting.

1/2+ cup large-grain sugar (i.e. turbinado)

2 cups spelt flour OR whole wheat pastry flour
1 teaspoons baking soda
1 teaspoon star anise, finely ground
4 1/2 teaspoons ground ginger
1/2 teaspoon fine grain sea salt

1 stick (1/2 cup) unsalted butter, room temperature
1/4 cup unsulphured molasses (I use Wholesome Sweeteners brand)
2/3 cup fine grain natural cane sugar, sifted
1 1/2 tablespoons fresh ginger, peeled and grated
1 large egg, well beaten
1 cup crystallized ginger, then finely minced
2 lemons, zest only

Preheat the oven to 350F degree – racks in the top and bottom 1/3 of the oven. Line a couple baking sheets with unbleached parchment paper or a Silpat mat, place the large-grain sugar in a small bowl, and set aside.

In a large bowl whisk together the flour, baking soda, star anise, ground ginger, and salt.

Heat the butter in a skillet until it is just barely melted. Stir in the molasses, natural cane sugar, and fresh ginger. The mixture should be warm, but not hot at this point, if it is hot to touch let it cool a bit. Whisk in the egg. Now pour this over the flour mixture, add the crystallized ginger (make sure it isn't too clumpy), and lemon zest. Stir until just combined.

I like these cookies tiny, barely bite-sized, so I scoop out the dough in exact, level tablespoons. I then tear those pieces of dough in two before rolling each 1/2 tablespoon of dough into a ball shape. From there, grab a small handful of the big sugar you set aside earlier and roll each ball between your palms to heavily coat the outside of each dough ball. Place dough a few inches apart on prepared baking sheets. Bake for 7-10 minutes or until cookies puff up, darken a bit, get fragrant and crack.

Makes about 4 dozen or so.

I have a friend who works with stroke patients. She says that they tell them to think in "seasons, not months," in order to estimate the pace of their recovery. This idea was helping me a season ago, in the fall, when all I was dealing with was nerve damage to my inner ear. Back then I was on a linear and fairly clear path, using vestibular therapy to try to rewire my brain around known damage, and like a stroke patient, gradually moving towards ever-greater normalcy.

But that was a season ago, and since then two other major issues have come into the picture: migraine and POTS. Or, maybe I should say one issue: autonomic dysfunction .  That is to suggest that my brain is not running the show correctly, and my blood pressure issues and migraine issues are all tied back to this rat's nest of neurons in my skull. This is a lot harder to cope with I find, or maybe it's just that the grass is always greener. 

I didn't have a good week. On Monday, I was told that it would be best for now to just stop attempting to exercise. It frankly is no longer safe and also is making things worse emotionally (always failing at it) and physically (lowers my blood pressure even more). On Wednesday, I cracked and ate four chocolate chips. The six weeks with no chocolate was getting to be intolerable, and although I had set the goal of making it all the way to February 1, flawlessly following the migraine diet, I couldn't take it anymore. So I ate the chips… and that night was horrible. I was nearly too dizzy to walk, and ultimately took an entire antivert just to be knocked out and make it all stop. The next day I was in a standing position, brushing my hair, and had the experience of suddenly nearly losing consciousness. I was able to get to bed and lie there for a while and recover, but it was not a fun moment. That's the first time it ever happened like that and it was really scary. 

It's becoming painfully obvious that I can't solve this– as I had hoped– with just stopping vestibular therapy, taking lots of vitamins, and removing all dietary triggers of migraine. I'm going to have to go on some sort of serious medication.  

After the hair-brushing incident, I went into the office at school and told them that I can no longer drive anyone else's kids to skiing. I was trying to pitch in but this is irresponsible. I feel anxious enough about driving my own kids… the office ladies of course were nice about it, appreciated that I came forward, and will find other moms in other minivans who can take a few extra kids. The idea of NOT driving at all, the implications of that, are too huge to fathom. We'd need to hire a full-time nanny and it just seems impossible to believe that we would or could ever do that. My job would go from being full-time mom to being full-time sick person and I think I would find that just crushingly depressing. I feel that I need a doctor to tell me "You should not be driving." Or "You are okay to drive." In effect, that's what they DID tell me, as the material they gave me after the tilt-table test did not say anything about it. It just said to ingest huge quantities of salt and fluids and to be careful when changing position, it did NOT say "stop driving!"

I  was talking to a friend on the phone the other day, who said that she wishes this was all like a TV doctor show, where they just put you in the hospital for three days, run every possible test, and then at the end of the hour, reveal the cause of the problem and cure you. Especially the cure you part. But this has gone on for so long now, and these month-long waits between tests are just excruciating. Eight more days until the radioactive blood, and even then I don't think I'll get results until later in the week, because of all the lab work that will need to be processed. 

I found this website about POTS. http://www.dinet.org/ The little video on there is pretty hard to watch for me, so depressing! Young women in wheelchairs with service dogs… oh boy. 

Here is an npr story about the migraine diet that I'm on. There's a link to a pdf on the left hand side, but I can't get it to upload over here right, so just go and take a look if you're interested. http://www.npr.org/templates/story/story.php?storyId=18916061

The trickiest part, by far, is the avoiding of MSG. But after six weeks, I can say I'm getting the swing of things pretty well. Today I'm going to make some triple ginger cookies so that I can have a treat of some kind in this chocolate-free wasteland.

What better thing to do on a cold and dreary January morning, than look at seed and flower catalogs and make plans for the garden? So I was trying to cheer myself up by doing this, thinking about starting a hydrangea garden over by the play structure on this semi-shady hillside bed that is now covered with poison ivy and weeds. I was thinking about whether I should plant dark purple salvia all along the front of my rose-daisy-russian sage area that I can see from the kitchen. And then I started thinking, oh lord, what if next summer is like the last? What if I'm in bed every beautiful Saturday, incapacitated, and the garden is full of six-foot tall weeds? What if even by then I don't get my life back, and everything I order now just sits in the boxes and rots? 

But no, I can't think like. I've got to map out a different plan: a week from now, the radioactive blood test reveals something curable. The neurologist and the cardiologist agree on a single perfect medication for me. I start it and it works. And then, two seasons from now, I'm out in the garden in my sun hat, tearing out those old weeds from last summer and putting in my purple salvia.  

This is not a good combination now is it? I'm so upset about it! Yesterday for what seems the one millionth time, I went to the workout place and attempted to exercise. Shortly I was nearly incapacitated by light-headedness. I attempted to just walk on the track a bit, and found my feet all wobbly and uncoordinated. Salt? I'd had enough to stun an ox. Water? Plenty! Snacks? Yes! I really am at a loss. And meanwhile, my pants are growing ever tighter– coincidence? I think not.

I also had a couple unpleasant epiphanies yesterday. One, while driving… I began to experience this extreme sleepiness that so often overcomes me. Generally I chalk it up to actual sleep deprivation, from which I've been suffering since roughly 2002 when Isaac was born. However, looking at the facts, actually the boys have been sleeping fairly well of late. Isaac sleeps like a log now. And even Elias has been giving me at least a decent 6-7 hours a night. I could always use a bit more, but who couldn't? What struck me yesterday was that I suddenly had a frame of reference for this particular type of sleepiness– the tilt table. This is what I felt while tilted– crushing sleepiness, over powering tiredness. It's not what I would expect "fainting" or (new fancy term) "syncope" to feel like.

So this brings to mind the fact that on Monday I went to renew my driver's license, and they asked me directly, "Do you have epilepsy or a fainting disorder that effects your ability to drive?" And I said no. But even as I said it, I thought, you know what… I think I actually DO have that. But the implications of saying so, and then perhaps not being able to drive, this is totally impossible to fathom in my car-centered suburban life. What would I do? Hire a chauffeur for the children? And I haven't ever had that sort of thing come upon me without warning, so I do maintain that driving is safe for me, my charges, and the other people on the road.

So then I remembered something else– this is not new. This has been a part of life from the get-go. I just didn't know what it was, or that other people didn't all feel this way. I just thought I was lazy, slow, sleepy, cold, and exercising was miserable… low blood pressure causes all of that. Then I remembered something else– something I totally forgot to tell the doctor when she asked me this–  there have been three other occasions in my life where I have actually collapsed and hit the ground unconscious. I just chalked them up to sun, too much of it.

1) In Holland on the beach when I was 16. I was waiting in a line and keeled over. I remember being curled up under some hedge when a lady came and said to me in German, which I don't speak, something like "du beist nicht gut?" Too much sun– dehydration?

2) In Kenya (doesn't think make me seem well-travelled? Which I'm not!) at 19, I was riding on a bus on the coast and found myself fantasizing about eating handfuls of salt. This should have been a tip off– but then (I was alone) I was riding (beside the bus) on this flat, no-railing ferry across a river teaming, so it seemed, with huge crocodiles, and feeling very weak, tired and faint, no knowing what was going to happen. And then I was on the ramp on the other bank, and bent over, trying to steady myself. I looked up at the concerned Kenyan man looking down at me and saw him in negative– he was white and the sky was black. then I passed out– worrying as I went what they would do to rescue me and whether I would get some dread parasite if they poured river water in my mouth. But they didn't. Someone wisely got me salty cashews, which grew there and were sold all over the place, and a huge green coconut, which must have held a quart of juice– clean, too. I was revived and totally grateful and went on without thinking about it.

3) Somewhere in Minnesota, when I was out surveying with my uncle John. From his perspective I was standing far away in a field of tall grass (helping him for the day to earn a little money), holding this measuring stick. He looked at it through his surveying instrument and turned away to write down the numbers. Then he looked back and I was just gone. He scanned the entire area to the horizon with his surverying instrument, and I was simply nowhere. From my perspective I just got more and more tired until I crumpled and was lying down in the tall grass. I was going in and out of consciousness. Creepy crawly bugs were crawling around on me, under my clothes, and then I was "asleep" again. After a while I heard John walking towards me– trying to estimate where I had been and pace it out to find me. He was whistling in a nervous fashion and soon found me. I told him I thought I'd had too much sun, and he went running off at a trot. He came back with a canteen and poured it over my head, gave me some to drink and got me revived. Then we called it a day– we stopped at a gas station and he bought me a very large gatorade, after which I was back to normal.

Now, that was when I was maybe 22 or something, and this has not happened since. But I think it has not happened only because I learned that I "can't handle the sun" — What I'm thinking now is that it's not so much that I can't handle the sun, but that I DO have sudden drops in blood pressure, and I DO need tons of salt and fluids to keep that from a happening. Being in the sun surely makes it worse, but that's not the underlying matter. I forgot all this until yesterday, when I was in the grocery store with Elias, and having the worst white-knuckle time staying vertical, clinging the cart for dear life. Suddenly all this popped into my mind and my whole life began to make sense. This is how I've always been– it's only gotten much more exaggerated in the last six months. But it's not new.

So– ear infection causes labrynthitis, which triggers migraine syndrome in the form of dizziness and weird sensory input issues (e.g., shoes!), which exacerbates? an underlying low-blood pressure problem which has always been there, causing a total train wreck of dizziness and a real diagnostic muddle that goes on for months and months!

But if this is true, then we are getting to the good part: the cure. Now that I have this all laid out in my mind it seems a painfully long wait until January 25 when I get to go and do the testing to (one hopes) learn the cause of the low blood pressure and one hopes (!!) cure it! I have this ray of hope now– that I could, between the migraine diet, and the cure (drugs? transfusions? I don't know) for the low blood pressure, actually have my life back to normal!

Then, as is so often the case, I started getting greedy: maybe if we cure the low blood pressure that has been part of my life since day one, I would actually be better than normal! I mean, I would have energy and get-up-and-go like other people. And I could get into shape and get into skinny jeans! Now that's a happy thought.

One the other hand I'm harboring other fears… what if I have some horrible blood production bone marrow disorder and this is all just the tip of the iceberg?

Best not think about it.

In any case, although this is surely a huge hassle, I do think we're closing in on a solution. While I'm not looking forward to the radioactive isotope thingy and the IVs and blood, blood, blood on January 25, I am really REALLy looking forward to the answers that the test might — could– provide. 

He would surely work hard devising new and more devious ways to test what ails me.

I did the infamous "tilt-table" test yesterday– yes, on Christmas Eve Day. Why?? Well, we have a very large deductible, which we've endured paying through in 2009. At this moment, there is a short interlude of the long-coveted 100% coverage, so I really wanted to get this horrible test done (surely it cost $5K, but I don't know) before Jan. 1. When the vestibular goddess kicked me to the curb in November, this was a test she wanted done, and they are so booked that Christmas Eve Day was the only option in 2009.

So… This test was to find out if a blood pressure problem, sudden drops in blood pressure, low blood pressure in general, was causing some of my dizziness. This is a thing called POTS (postural orthostatic tachy… i don't know… something like that). Vince has long suspected that I have it, and it's at least part of the puzzle. The neurological god also suggested that this could be a factor– possibly a consequence– of my poor migrainous brain misfiring.

First I met with this.. hm… cardiological goddess, I guess I'll dub her. A tiny, wizened, old lady from Egypt with a maroon Toni Tennille Wig and a twisted hunch back, who is reputed to be the best at figuring out POTS. She exuded both warmth and authority as she meticulously attempted to transcribe my story word for word with her claw-like bent fingers. I started out trying to tell her about the day I had my first vertigo attack. Then she began to type, "The… picnic… began… at noon…." And I thought, "Um… this is going to take a while at this pace." And it did. But eventually, after repeatedly being reminded to slow down, I learned to pace myself by her typing speed and we got through it. She listened to my chest and felt my pulse in my ankles and then sent me off to be tested. 

I never like the look of a bed with straps. Am I right? Are you with me? There's something inherently off-putting about it. The two nurses waiting for me– a boss and an younger underling–  were kindly and businesslike, got me into a gown. (I was allowed to keep most things on, just not my shirt because the long sleeves wouldn't push all the way up easily.) Getting into bed with my shoes on? But there was a little vertical ledge near my feet, where, when the thing was tipped up, would become a platform to sort of stand on.

The IV is always a problem with me. THis one took three miserable tries, with lots of repositioning and twisty-turning, to find a decent vein. (I was sitting at dinner after this last night and spied Ben's massive sturdy veins from across the table, and thought, "Seriously, I now have vein envy.") They just had to put in a port in case my heart stopped or something like that, but they didn't inject anything into it or take anything out. They tucked me in under a blanket and then strapped me down with big velcro bands and placed two different blood pressure cuffs on me. One the machine would do it automatically every minute, the other the boss nurse would do whenever she felt like it.

The boss nurse lady began, "Now, we're going to ask you to tell us everything that you're experiencing, and to rate it in intensity from zero to ten. Also we can stop at any time, just tell us." (Okay– that part wasn't so Dr. Evil, but the rest was!)

At first the table just tilted 20 degrees, which you wouldn't think would be a big deal, but I instantly felt horrible. Dizzy, nauseated, and just… AGH. The underling nurse kept making remarks like, "two is mild. Three is trivial" while the boss kept typing at a keyboard. At 30 degrees I really thought I was going to die or at least black out. THe boss asked me to rate my nausea and I said, "horrible…" and she said, "Is it a ten? We can stop if you need to." I said I could go on. My dread was that if we only did it partially and didn't get the information they needed, then some other day I would be doing this all over again. It seemed to level out for a while there, they kept me at 30 degrees for ten minutes or so and I acclimated somewhat.

Then they tipped me almost all the way up to standing, at 80 degrees, where I was to remain for 45 LONG eternal minutes. The underling nurse would say, "21 is trivial… 22 is mild" like that, which I later surmised were minutes, how far into the test I was, and how horribly I was faring. But I felt so bad that again I was annoyed that what I was going through was "mild and trivial" to them. The boss lady said, "Try to keep your eyes open, tell me if you have any visual symptoms…" I said that the light in front of me was falling down like a waterfall from the light fixture. I watched it pour down, first one eye and then the other. My hands and feet felt bloated and tingling and I was crushingly tired. I just wanted to sleep very badly. "It's… very hard… to stay…awake…" I told them. The keys went tappity tap. "Try to keep your eyes open," she said again.

I felt very much like James Bond, post-drugged martini. Whenever I opened my eyes just a crack, all I could see was blurry and too bright. I kept them shut. Then the underling said with a note of firmness in her voice, "31 is MARKED." The boss lady sprang up and took my blood pressure. My chest suddenly felt very hot. "Can't… stay… here…. much longer… " I said as best I could. I noticed that my knees were pressing firmly against the straps holding them in place. If the straps were not there, they would've folded long since. I was going under, but still conscious in some part of myself. They began to speak strictly in numbers: "What'ya have over there?" "I've got 32." "I just got 34 here." Just then the blood pressure machine beside me started to beep in an alarming fashion. "That's it, we're going down," the boss lady decided. The bed tilted back to flat immediately and it was all over.

I made it to 32 minutes. My blood pressure dropped so low that the machine could no longer measure it, hence the beeping. Meanwhile my heart (trying to get some blood someplace) went up to 137 beats per minute. Apparently this is not normal– and I suddenly understood why standing in a line at the grocery store can really be so awful for me. All they did to me was make me effectively stand up for a half hour straight and this was the result. 

After a while (5 minutes?) of lying on my back, I started to feel somewhat normal, open my eyes and look at the ceiling, which now looked like it should. They undid the blood pressure cuffs and pulled out the IV port, undid the straps and told me to sit up when I felt ready. After a while I sat up. They gave me some cranberry juice and I felt basically okay. "How'd I do?" I asked. They demurred to tell me much, as that was up to the doctor. But the boss lady offered this, "It was not a normal test, let's just say that."

I got dressed and went into the room next door to wait for the dr. After what seemed a long while, she showed up, and then went into the other room to talk to them about what happened. I couldn't hear everything they said, but I heard the boss lady say, "We stopped the test at 66."

When the dr came in, the first thing she said was, "Your test is positive." I said, "You mean I have POTS?" SHe said, "Yes." I said, "Is this part of what's causing my dizziness?" SHe said, "Most definitely."

I said that the neurological god had said to be on the lookout for this thing called orthostatic hypotension, which he defined as the brain sending the wrong information to the heart. I thought that was the term. She said, "Yes, you have it. But there are two kinds. Let me show you the chart…" SHe began to scribble all over this little graph of my heart rate and blood pressure during the test. Basically what I went through was fairly normal– the horrible first few minutes were what she called "the startle effect" but then my body figured out how to manage being at that angle. Where things really went south was at the very end– I was going along more or less survivingand then, around minute 32,with no change in the external forces at work, my blood pressure just fell off a cliff and my heart went berserk. The machine could not read numbers that low, but said that the mean of the two blood pressure numbers was 66.

So now what?

Now we know that I have this, the question is why? Possible reasons are something wrong with my heart (not likely), having too little blood in general (???), or having a messed up brain that is running the show very badly. Obviously I think it's most likely the latter, but in order to find out I will need… you guessed it… more testing. So on January 25th I'm scheduled for another round of total joy– IVs for starters. This time they are going to literally give me radioactive blood like spiderman. I'm going to get a card for Homeland Security– I'm not making this up– that I will carry for three months, in case I set off any geiger counters. No, I'm not carrying a pocket nuke, I … myself … am radioactive. This will certainly give me some street cred with Isaac, who is already boasting to everyone about his mother's radioactive blood. I have to fly tomorrow out to Minneapolis with the boys, god willing. Luckily my blood is not radioactive– yet. All I have to worry about is the weather.

To cleanse the palate after relentless medical related updates, I offer an amusing gift idea from Elias (a very mature age 3). We were driving along as per usual and Elias was imagining all sorts of remote-controlled devices her would have one day. Like a remote controlled sign (?), window, fence, gate, really anything that he saw at the moment while thinking about remote controls. And on like that until:

Elias: How about remote controlled poop?

Me: um…. well…. what would it do?

Elias [brightly]: Oh, it talks!  

Me [picturing this]: …. okaaaay. What does it say?

Elias [robot voice]: It says, "I. AM. A. ROBOT."

Me: well, that would be pretty strange…

Elias: Can we get this strange thing for Isaac? Can we? Please? Please? Can we?

Me: uhhhh…. hm. Well, I'm not sure Isaac wants that. And I don't think the stores have it.

Elias: PPLEEEEEEEAS???

Me: Okay, IF we find a store that sells remote controlled talking poop that says "I am a robot," then, YES, we can buy it for Isaac.

Elias: YYYYAAAAAY! Thanks Mom!  

Apparently someone who suffers from migraine is called a "migraineur." However, as a woman with more than passing familiarity with high school French, I resent the masculine ending. Thus I declare myself to be a migraineuse.

As has been the case repeatedly in the past six months, I've been spending the week getting my head around my new diagnosis, new identity, and new community of fellow travellers. My first task on this journey was to answer the question drugs or no drugs. Let's review the options:

A) follow the recommendation of much-trusted Vince, and the highly-regarded neurological god, and go on Cymbalta. This is a powerful SNRI, used primarily for treating anxiety and depression, with sideline uses like migraine.  It:

• might take 1-2 months to see if it's working; might need the dosage adjusted, and then another 1-2 months to see about that; then might need to be scrapped altogether and the process repeated with a new drug
• is expensive
• comes with a host possible side effects, including but well beyond insomnia and dry mouth– things like suicidal thoughts and paranoia.

OR

B) Try to stop the symptoms with lifestyle changes and diet, which:

• might take 1-2 months to see if it's working
• is cheap
• comes with a host of possible side effects, such as the risk of becoming even more fanatical about food purity than I already am, annoying loved ones and wait staff for miles around, and becoming overall more healthy, clean and sober (totally wine free), out of the grips of caffeine addiction, and possibly somewhat more svelte.

When I looked at the migraine diet itself (my peeps at the dizzy lounge directed me to this book called "Heal Your Headache" which seems to have Bible-like stature in the Migraine-Aggravated-Vertigo community) and saw that the four of the top offenders — caffeine, chocolate, aged cheeses, and nuts and nut butters– are in fact my major daily food groups, I decided that there is room for real improvement on that front. And my intensive vestibular therapy, which was purposely irritating every nerve in my balance system twice a week, plus homework, had to be making matters a lot worse. And looking at the struggle and the issues with going on a serious drug like that– Vince said "You will hate it, you will feel foggy headed, but you have to suck it up"; the N. God said, "it might make you feel like Jimmy Buffet"; a friend said that her brother strongly considered driving his car into a bridge abuttment while he was on it– it seemed very obvious that I should at least really TRY to solve this drug free. If I can't, and two months from now I'm still as dizzy as ever, I can look at the drug then. But for now, I'm really giving it the college try.

So here's my new hobby: walking up and down the aisles of grocery stores with an empty cart and empty stomach. I simply can't find anything to eat! No more trail mix in a pinch, no more Luna bars for women, no more salad dressings or citrus fruits, no more freshly baked breads, and on and on. Even making things at home is tricky– leftovers start to age within a day and start producing a migraine trigger. I went to make chicken pot pie this week, and found that even the purest free range, organic chicken stock includes the dreaded "natural flavor" — this is likely MSG, which I'm coming to see, is in EVERYTHING. So to make the pot pie, I had to first make my own stock from scratch, which luckily I often do anyway, but wanted to skip for convenience for once. I also had to modify the biscuit topping– no buttermilk or cheddar cheese could be in there– and switch out onions (bad) for shallots (good).

What I'm finding is that I need to make everything freshly at home from totally simple non-processed ingredients, and then freeze it in individual servings. I just figured this out today after several days of going around hungry and at a loss. No Greek yogurt? No walnuts… No… sniff… bittersweet chocolate chips?

This makes it impossible, I think, to eat out. The holidays are going to an exercise in frustration. But the alternatives (chronic dizziness or hard drugs) are so unappealing I'm willing to tough it out. This is going to make the holidays pretty interesting. What Heal Your Headache says to do is treat every party like a pot luck, and bring something you know for sure is safe to eat. This seems like a good strategy, although not at all convivial. But worth it. Preliminary results are promising. I'm less dizzy already!

Weaning adventures, caffeine withdrawal, and my fun outing to drink barium, all this remains to be covered, but I'm out of time.

Yesterday I went to the super god of neurology, who Vince said was going to be the code breaker who could figure it all out. And he did, I think. Thus I close one chapter and open the next.

The week was one long crucible of stress, kicked off early by an unlikely situation at my barium swallow. I had to go to the hospital in Akron to have this test in which I would drink barium and they would x-ray me in that proces– this being a follow-up to my chest-pain-probably esophagus ER visit a couple weeks ago. (God!! This has been just ridiculous.) So I had to fast– no food or drink for 12 hours previous, and go there and put on a little gown. Ben had to rearrange his schedule wildly so that he could get Elias and I could do this. But when I got there I flunked question one– when was your last period? I disclosed that it was more than 28 days ago, and indeed just a wee bit late. And then the lady flat-out refused to x-ray my abdomen unless I could prove via blood test my non-pregnancy. I tried in vain to convince her of the absurdity of that notion… but without proof, no luck. The blood test involved getting dressed and going to the lab in a different building, waiting a few hours hours and with luck getting back into the radiology schedule. Thus logistically impossible that day. I had to get dressed and leave, thinking the whole thing would be resolved by the morning for sure. 

But then it wasn't. The head noise, and the what-ifs, began in earnest. How could I get through a high-risk pregnancy with this horrible vestibular condition AND two wild boys?? I began having extended conversations in my head, between my sane and insane lobes.

Insane: well, we could just move the boys into Isaac's room in bunkbeds and then make Elias's room the nursery…

Sane: don't think like that– it's just a little late…

Insane: Maybe we'd get our girl! You know, little red-headed angelic Josephine… 

Sane: now, hush! There's no substance to it at all. You're 43. How fertile do you think you are?  

Insane: but a third boy??? Just shoot me now! I couldn't survive that.

Sane: Shut. Up.

Insane: And the pregnancy itself?? WHile dizzy!!? We'd need a nanny! How can we afford that?

Sane: Shut. The. F. Up. I'm serious. STOP!!

Insane: But babies are so cute… the little pink feet..  

That type of thing. Finally it got so bad that I had to go and get an EPT and pee on it. Negative! Hello! And still, the insanity didn't end there. What if it was faulty? Those things have been wrong before. Etc.

So this was going on as I was prepping myself for the big life-altering appointment with this incredible neurologist in Cleveland. But I'm a cycle of hope and disappointment with these people, and even now, the next day, when all is calm, I'm still sitting here thinking, my third diagnosis. I hope my last. But what if this is another link in the chain, and I'll try this for three months, and then something new will come along?  

I spent the afternoon trying to figure out whether or not to ask the neurologist for a blood test to confirm my non-pregnancy, while also trying to organize my entire narrative of this whole now six-month ordeal of dizziness, getting my facts in order, trying to anticipate questions and formulate cogent answers. When I got there I was in quite a state, dizzy of course, trying to restrain my pregnancy thoughts and focus on the much more pressing and large matter at hand. 

I won't name the dr., but he is a lovely shortish man of Indian descent (Indian guy on The Daily SHow talking about Sanjay Gupta: "We're all neurosurgeons, Jon! Everyone in the country! We're just born with a basic MD and take it from there!"). He came in with the most incredible woman– a plastic surgery victim in the extreme. Her lips had been inflated with unreasonable amounts of collagen, to say nothing of her chestal regions. She had long dyed hair and also tons of make-up and ridiculous clothing that included but was not limited to black lace footless tights and ballet slippers. I initially found her appearance off-putting in the extreme, but by the end she was my best buddy, intelligent and perceptive, asking probing questions with just the right amount of sympathy. 

In any case, the dr began by asking me to tell the whole story. This in itself I appreciated, as giving the four-minute executive summary never is good enough with a case this complicated. "You'll find I do things a lot differently than the  other doctors, and more of my patients are like you– having seen countless doctors and been told 'Well, either you'll get better or you won't. Have a nice life!'" Which is pretty much verbatim what happen with the vestibular goddess.  

He went over everything with a fine tooth comb. At one point he asked me a list of things that bother me when I'm in a dizzy state. When we got to smells, I said, "Oh god! I can't tolerate anything when I'm like that. It all makes me so nauseated!" At this he broke into a huge smile and announced, "I think we can fix you."

He put me through a bunch of tests, pushing and pulling my limbs, making me walk (or attempt to walk, as I was all over the place). Then the poked me here and there with a safety pin, not drawing blood or anything. One telling moment was when he was poking my forehead. He asked me whether the sensation changed and I said, "It was a little stronger there towards the top." And he said, "That's interesting– I was poking in the same place the whole time." It felt to me like he was poking in a line going up from my eyebrow to the top of my forehead. So too on my cheeks, it seemed to me that he was poking along from my cheek to the outside of my eye, but in fact he was staying on the same spot the whole time. He was intrigued by my feet issues (and hands too– I told him about the dry rice and beans they make me fondle at vestibular therapy, ugh) and quickly provoked dizziness by vibrating my toes with a machine.

Then he walked out and came back in for the big reveal. I even joked with the plastic surgery victim that it was like a reality show. He said, "I am now going to say a word to you that will be very surprising: migraine." Well, I wasn't totally surprised, because this has been on Vince's mind for a while and many people on the Dizzy Lounge have what's called Migraine Aggravated Vertigo (MAV). The dr explained, "It's not a migraine headache– it's a migraine syndrome.  It's the brain not processing sensory input correctly."

He went on to explain that the ear thing probably kicked it all off. "It's like you had a pile of wood in your back yard for years– the tendency to migraine– and then one day someone threw a match on it, that was viral labyrinthis from your upper respiratory infections. Now it's blazing. we can take out the match– your ear can pretty much heal up– but that doesn't stop the fire now." Another analogy he used is, "If your mouse, your keyboard, and your monitor all start acting weird on the same day, is it more likely that you just have terrible luck and three separate things broke at once? Or is it more likely that the central thing they all rely on– the computer itself– is broken?"

Today at vestibular therapy, Vince referred to my brain as "diseased." As in "… When we're dealing with a brain as diseased as yours…"

That's the other thing: vestibular therapy is now over, effective immediately. Seems if migraine is the problem, vestibular therapy makes it worse. Vince did help with my neck flexibility and strength, which is a major balance center, and also my ankles. But with migraine all you're doing is irritating those already irritated nerve endings and making the system even more hyper-reactive. 

The dr now wants to put me on a drug called cymbalta. He says we have to break the cycle and get the nervous system to calm down, stop the dominos, and get things back to normal. He said, "It might make you feel a little like Jimmy Buffet." (i.e,. wastin' away in margaritaville). It's an anxiety and depression drug that has a secondary use for cases like mine. I read a little about it last night and didn't feel good about it at all– side effects, withdrawal symptoms, for instance. But I talked with Vince about it and he said he's known lots of people who've found it to be incredibly helpful. He says this dr is not pill-happy and actually rarely suggests things like this, and so wouldn't do it lightly. But he also says it might take a while, 30-60 days to settle into it and to get the dose right and I might be on it for a year!

I'm so scared of that! That sounds like it's fraught with a whole bunch of other issues and complexities. But by the same token, I'm sitting here on December 4th with thong sandals on and I'm really getting desperate. If something– a magic pill for instance, which is just what I've been wishing for– could come along and make it go away, so that I could FUNCTION again, well, that would be great. And would being stoned for the holidays really be so bad?

But before I could do that, I first have to wean Elias. Messing with my brain chemistry is one thing, but his? No. Also, you may be aware that he's over three and really more than big enough to stop nursing. It's not out of the blue. We've been working on it for months, and are down to really once or twice a day. We've had a sticker motivational program going too, and had set a hard deadline of Christmas. But now I've bumped that up to, well, last night. We nursed our last. I explained it all to Elias, and he was sad and cried a little bit. But as early as today, he wanted to nurse at naptime and I told him "We don't nurse anymore."He was upset, but ultimately settled down to drink egg nog (pasturized and non-alcoholic, obviously) and sit in my lap. So I think the weekend might be a little rough on both of us– hello, cabbage!!– but come Monday I'll be able to declare us weaned.

Also, you'll be as relieved as I to learn that the whole pregnancy scare is over. All is well. No need to start ripping out walls to build a nursery anytime soon (or ever I hope!). Now I just have to get my head around a new diagnosis and think through this drug treatment option. 

Onward.  

feet, feet feet! How many different feet you meet.

My feet are getting the royal treatment these days, as I struggle to appease them. Find out what they need and supply it. They are so, so insanely fussy. My feet are tyrannical, impulsive. They run my life like deranged charismatic leaders.

Yesterday it was snowing lightly as I donned my extremely bare Donald J. Pliner hidden thong sandals to go to vestibular therapy. I was not going to see Vince and be put through the normal paces. No. I was going to have my precious feet cast in plaster for posterity. Let's bronze them! They are so extraordinary.

Matt, the charming "foot man" of Vince's operation is going to try and fashion for me removable facsimile of the so- critical sandal surface. My concept is to then place this surface into fur-lined footwear. (I got some Merrill slides.) These I will attempt to wear barefoot, so that the bottoms of my feet can retain their must-have contact with the surface, while the tops are cozily not getting frostbite in the fur. Also, what in mid-November may have seemed a charming eccentricity, now on the brink of December is seeming downright crazy. I'm getting looks. My toes are very cold. I won't get the inserts for a week or so and even then I don't know if this is going to work. I pray that it will, because I'm out of ideas.  

It's been one hell of a week. I have been so $&@*&@#( dizzy all week. Just day after day of pure struggle. I don't know why. I don't know how to make it stop. I'm coming up on the six-month anniversary of my first vertigo attack and still, still in the weeds. A new twist too, which really scares me, is the falling thing. I've never truly fallen from dizziness through all this. But a few times in the last few days, I've almost fallen in a sudden and very scary manner. Time one: I was out of the shower and on firm ground, drying off my leg. THen I tipped over and caught myself just in time. Time two: I was on the basement stairs bending down on this little landing we have, sorting through laundry. I tipped over and caught myself just in time. Time three: I was attempting a delicate maneuver, to get out of bed from between a sleeping boy on one side and a sleeping cat on the other. I fell clean out of bed, doing sort of barrel roll onto the floor. Isaac witnessed it and was really shocked and amazed. So was I, although it was nothing more than a pride injury.

In addition to the falling thing, there's another sign of back-sliding: there's a constant hiss in both my ears now. I lie awake at night and try to match it to all known sounds. Crickets? No. Cicadas? No. Buzzing? No. Radio static? Not… quite. The hiss at the beginning of a vinyl LP? Yes. Yes… that's about it.  During the day in the din of my life I don't hear it, but at night it seems quite loud, persistent, and even maddening. I read that some poor people have tinnitus (not tintin-itus, as I like to call it) that not only is heard by them, but can actually be heard by others! Like their ears are actually producing noise! Oh dear god.

Thanksgiving was pretty daunting, too. We were hosting, which was quite a challenge. I alternated between being really happy and empowered to do it (I love cooking! It's a creative project to make this all work! I can do it! I'm not an invalid! I will not be defined by my condition!) and just being so dizzy and tired that I questioned the sanity of not begging off. I tried to be extremely organized, but with the boys helping, there are wild cards in the mix. Making cranberry sauce with Elias was utterly exasperating. Chopping celery while ducking flying projectiles. I don't know. They just have a lot of energy, and feeling as bad as I did all week it was difficult to find them ways to expend it appropriately.

But it all came together well. The table looked lovely, for one. We rarely bring out all the wedding china and all the linens and whatnot. I had a major crise de serving pieces at the last minute and ended up with things like gravy in the creamer, pie on bread and butter plates, etc., but what the hay. I think it went well. You really need a full staff to make a meal like that go perfectly, with everything timed perfectly and on the table hot. One person just can't do it. I served our traditional grapefruit and avocado salad as a first course on salad plates on top of the dinner plates, which seemed like a good idea at the time. But the problem was I didn't want to stop between courses and carve the turkey (too complicated, right?) so I carved before we started. I covered it with foil and a warm damp dishtowel, but by the time it was on the table it was pretty cold. That type of thing.  I burned the stuffing, or call it extra crispy. THe gravy was very silky and dark though. I followed Julia Child to the T and it came out as more than the sum of its parts. I got the turkey, a bourbon red, from a farm nearby where they also raise these adorable fainting goats. This summer I brought the boys over there and the lady let them give some miniature baby goats, no bigger than housecats, their bottles of milk. I noticed the beautiful flock of turkeys there, and then found out I could reserve one. So I can say for sure that this turkey was well bred and had a happy life before meeting her doom. (I've decided once again that eating meat is morally untenable, but I still continue to do it. My gesture towards morality is only buying ethically raised, grass fed everything.)

Maybe the piece de la resistance was the pie. I made it starting with a real pumpkin and hand-mashed it, which I think makes such a difference. So much pumpkin pie, which I usually hate, is like orange baby food. I was motivated by a recent incident involving Elias: I was in the other room when I heard a high pitched motor sound from the kitchen. I levitated three feet into the air and ran in full speed– my fear was that Elias had gotten his hands on the blender wand thing, which, let's face it, has an exposed blade. But no, it was just Elias, seated on the counter with the coffee grinder. It needs the lid on to run (although there's a risk he could defeat this security measure if he thought about it, which he will!). SO he was sitting there running it with little coffee inside, and he was also holding a chunk of wood recently shattered by Isaac in his taekwondo test. Was he intending to grind the wood? I don't know. I couldn't figure out the connection between these disparate objects. In any case, he said, "Mommy can you help me? I'm trying to make pumpkin pie and I don't know how!"

I don't know how to tell you this kid, but you're way WAY off. Maybe his ground coffee and wood pie will be all the rage in a couple decades hence. But seeing as he had an obvious interest in the process I got a pie pumpkin (it was so dry though that Ben had to break it open with an awl), baked it, mashed it by hand– not food processor, added ginger and cinnamon, maple syrup, cream and eggs, baked it. It came out so well that even I, a non-pumpkin pie fan, really liked it. It was not orange. It had texture. (Do you pre-bake the crusts yourself? My James McNair book says to, but I've never ever gotten that to work out right.)

Anyway…

Yesterday I had to take a third of an antivert in order to get myself together enough to go out to a nice dinner with Ben's sister and her husband. Grown-up time is such a gift! We had fun, ate well. These days I drink only sparkling water, and still the process of walking across a patterned carpet is very daunting for me. On these questionnaires about dizziness they always ask "Because of your condition do you sometimes worry that people will think you're intoxicated?" Yes.

While I was at vestibular therapy to get my feet cast, the guy needed to look at my gait carefully. He had me walk up and down this line, barefoot, several times. I almost fell once or twice. I swerved far and wide. I joked, "I'm really glad this is not a DUI test! I could never pass!" He said, "That's true." But he was not smiling.

I had a time there in October maybe where things were really looking better. I remember going to the gym and actually doing my biceps curls on the bosu like old times. And I remember Vince saying to me the next day, "We've never seen you look this good. But listen, you WILL have more bad days with this." I tried to brace myself for it, but still this relapse has caught me off guard.

The balance system is so insanely complicated it's a miracle that the human race can walk upright at all. What's wrong with me could be in my brain, my nervous system, my ears, or anywhere in between. It could be weird migraines or a sensory integration problem. I have high hopes that this neurologist that I'm seeing on December 22nd will be the code breaker. But I'm in a cycle of hope and disappointment with these doctors. In the meantime I can only remind myself, it's not life threatening. It's not life threatening. I don't have pain, like so many of the poor souls I meet in physical therapy. I'm not in chemo. I'm just sitting here on a couch in a sunny room that's rocking slightly, like a boat on smooth water.

Last night as we sat down to dinner, I had a strange pain in my chest. Sort of chest pain, if you will. Odd, I thought. Whatever. I ate. It stayed there. It just kept staying there. I breathed and it stayed there. I moved around and it stayed there. It was a dull pressure inside my rib cage, just to the left of my sternum. I tried to ignore it and go on as if nothing was happening. We finished dinner. I started to feel very short of breath and sweaty, clammy, and finally scared.

I suppose the specter of uncle will dying so suddenly was with me, and the cumulative strain of now nearly six months of as-yet undiagnosed dizziness. (I had a really dizzy day yesterday all told, and felt horrible, and was so depressed to find myself back where I started!) I told Ben I was feeling really bad, and went into the other room to consult with Dr. Google. I took three different symptom quizzes at three different sites and in each case I got the same alarming answer: CALL 911 RIGHT NOW! Proceed to the nearest emergency room NOW!! Do not delay!! and that type of thing.

I sat there by myself for a few moments and then posed this question: would I rather, A) have an unpleasant evening, get needle sticks, be scared, be embarrassed because nothing is actually wrong with me, or would I rather B) die?

I decided that I would rather inconvenience everyone, be scared, be embarrassed and have a miserable evening, than be wrong and sit there quietly on the couch having a heart attack. And much as I told myself it was probably nothing, I have no risk factors, my cholesterol is admirable and my blood pressure if anything too low, and I was making a fuss for no reason, I still had this nagging fear of, well, DYING. So finally I went into the other room where Ben and kids were watching TV and I whispered to Ben "I'm really scared. My chest is hurting. I think I need help."

Ben was WONDERFUL. And the kids too. He just sprang up, announced that they had to get their stuff on because Mommy is sick and needs to go to the hospital. Elias had no pants or underpants on at the time, but amazingly he found them and got them on himself. Shoes too. In a twinkling we were in the car. In anther twinkling we were a the ER. Ben went to park the car and I walked in and announced the dreadful words, "I'm having chest pain and I'm really scared." At that point I started crying and the whole thing just took on a life of its own.

I hardly remember how it all happened so fast. In just a moment I was wearing a gown, little EEG sensors were stuck all over me, oxygen was flowing into my nose, and  several vials of blood were coming out of my arm. Man, those people know what they're doing. THe nurse in charge told me, "DOn't be scared by anything that we're doing. We treat all chest pain the same."

A little while later Ben came in to check on my status (someone else was playing with the boys in the waiting area), and the nurse said, "She's scaring herself pretty good, but she's not scaring me." That made me feel better and I was able to sort of stop hyperventilating and grasp that whatever it was I was in the right place.

It kept hurting too, even as thing after thing was ruled out. "Our job is to determine whether this is going to kill you TONIGHT," the nurse explained. And once they determined that it wasn't everyone began to chill out, even me. For while there was the blood-clot-the-lung option on the table. I had to get chest x-rays and the dizziness was really bad while I was standing there by myself, in my little gown, with my trusty oxygen tank beside me. But someone brought me a chair when I started to visibly sway and everyone, of course, was incredibly nice and competent.

The kids came in and sat on my bed watching Phineas and Ferb for a while, drinking juice boxes. The dashing young ER doctor had this inky black wet-look hair slicked back. It was really working for him. Kind of a retro, DeNiro, Godfather vibe to it. Ultimately he said that he had no idea what was causing my pain, but that it was not cardiac, not pneumonia, and not a blood clot. Once those were all cleared, I was free to go.

There's a strange membrane between patient and regular person. It has to do with the gown I think. I came in at first and stripped to the waist and put it on, becoming a patient. Then did the process in reverse, passing back through the transformation and becoming myself again. We went home. It was about 10:00 at night by then. The whole thing took 2-3 hours or so. Baths and bedtime with kids high on oreos, but okay. Much better than being rushed in for some sort of surgery instead.

THis morning, of course, I'm drained and tired. So is Ben, but he has manfully agreed to take the kids to a birthday party at a place full of loud inflated jumping structures.

I've been looking around for some explanation as to what happened, and I think I have it. I've had reflux for about ten years now, and I think my esophagus is starting to feel some real wear and tear. One of the many doctors I've seen over the last six months has been pretty concerned about it, but with all the dizziness and whatnot it's just been on the back burner. Anyway, I found this sentence this morning, "chest pain from esophageal disorders can be an alarming symptom because it often mimics chest pain from a heart attack." 

So that's my working hypothesis. Not that i have time for this, but I suppose I should go and check it out at some point in the not too distant future. I'll confess that I have been having trouble swallowing, which is a huge red flag. And I've been ignoring it, because I'm so damn dizzy all the time it's the least of my worries.

IN other news I went to the first of two neurologists on Thursday. He's a spine man, and basically the upshot was that he feels my dizziness has nothing to do with my spine. In fact, even though he didn't want to directly contradict the vestibular goddess and her wildly illogical diagnostic reversal, he said, "It really seems like an inner ear pathology to me." He also said, "I think you understand your condition very well, and you are on the right track with your vestibular therapy." So that was reassuring.

I'm seeing the real vertigo/dizziness neurologist in a month or so and then will have another opinion. Ironically I'm seeing a cardiologist around then too, for this tilt-table test. But last night makes it seem that I should be seeing a digestive disease person too and get this esphogus looked at, treated, whatever.

I just feel that I'm on this train to medical land. I want to get off, but I can't get off. Dear body, I would like my life back. Thanks.

Also I just turned 43. Whether this is young or old is a topic of hot debate.

Today, other than recouperating and staring at the wall for some lengthy period of time, I'm going to get working on Thanksgiving. Make cornbread for stuffing. Chop vegetables and freeze them (also a stuffing component). Make pie crusts.

We're hosting and there's a lot to do.