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.  

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

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

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

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

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

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

Oh, who knows?

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

I'm still pretty dizzy.  

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

Okay, so let's review the timeline:

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

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

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

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

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

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

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

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

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

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

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

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

But--but--but--but.

I was literally speechless.

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

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

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

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

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

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

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

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

AAAARRRRRG.

But. I. Am. Getting. Better.

Focus, focus, focus.

Next Monday, the neurologist.

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

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

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

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

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

and this:

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

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

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

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

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

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

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

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

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

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

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

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