It's been ten days since the radioactive blood testing. Ten excruciating days of wondering where this whole thing is going to go from here, and whether "the truth is out there." I've had plenty of time to consider all the possibilities, whether good, bad and indifferent.  And the bottom line is, I still don't know what's wrong with me, and I still have effectively no treatment happening whatsoever, and based on what I heard today I'm going to still be in this purgatory over the weekend, too.

They said a week. To be nice, I gave them Monday (day 7) as a grace period. Then on Tuesday, I called. I was told that they wouldn't tell me anything over the phone, but would send it in a letter, presumably by elderly mule, which would take several days to cover the 30 miles from Cleveland. They won't e-mail it, either. She said that they would only talk about it on the phone after I've read the letter. Then the nurse would have a copy and I'd have a copy and we could discuss it like adults.

I'm sure this is very efficient from their stand-point. That way they don't have to answer a bunch of questions that will be answered in the letter, and, although this is anxiety talking, they won't have to deal with the initial emotional brunt of someone hearing bad news (if any). The person can read the letter and slump helplessly over the kitchen counter, cry their eyes out, google everything, call their husband, call their mother, and THEN after all that call the nurse in a much calmer and more poised frame of mind.

Anyway, that's what it looks like from my vantage point of helpless waiting.  

I've implored Chynna, the seemingly smart and kindly secretary of the wise old doctor, to do something to expedite this mess. I call her daily, only once, after I DON'T get anything in the mail, and again beg her to look into or leave a message for someone. I'm always polite and try to appeal to her sense of sympathy. But the bottom line, she told me today, is that the doctor hasn't reviewed the results and until she does that there's nothing that can happen.

Do you realize that I got this referral, from the doctor formerly known as the vestibular goddess, in early November? Yes, it's true. Then it took until Christmas Eve to get the tilt table test, and another month to get hemodynamics and blood volume. And it's been ten days since then. Which is to say that it's been three full months in this latest phase of the 8-month dizziness ordeal, and still nothing is any clearer. I was thinking today that it's a good thing we don't have socialized medicine, because I understand that those poor slobs have to WAIT for CARE...

Meanwhile, I don't think my condition is getting any better on its own. The migraine diet, for all it's nuisances, is helping take it down a notch. But at the same time, this other thing seems to be happening more and more. It's the nearly blacking out thing. It's the sense that I can't cook a whole meal because I can't stand up that long and it seems I'm lying down for 20 minutes for every ten I'm standing. Dealing with the boys in this condition is really almost impossible.

Yesterday Isaac had a physical outburst at school-- I think it was playful, but he did punch his best buddy... in the privates... which caused quite a commotion. Our consequence for that is no screen time for that night, which is if anything too lenient. But for him having no Wii, no video, no iPod, no NOTHING all night is very distressing. (Of course, my sickness hasn't help matters-- I NEED him to be that plugged in so that I can cope with Elias from a horizontal position.) However to make matters worse, he went on a sort of rampage when I told him the news. He went outside and got a snow ball, which he brought in and whipped at me right in the kitchen, and when I tried to corral him after that, he ran outside and deliberately broke a ceramic bowl that we had a on the terrace. Then he proceeded to maraud around the outside of the house. At times he seemed to be attempting to break windows with his feet or with a broom, although his efforts were totally ineffective, still, he WAS trying. At that point I was on the phone with Ben, telling him to get home ASAP. (It was coming home time, but he had planned to stop at the grocery store.) The reality was that Isaac has gotten pretty big now and with me as impaired as I am, it was impossible for me to get out there in the snow and hog tie him (if not spank him!) and drag up to serious incarceration.

Frankly, it was sort of scary. Throughout it all, Elias kept pulling on my sleeve and asking me to read him "TAILS." I kept putting him off, wanting instead to focus on the crisis at hand, and he kept interrupting me to ask again. Thus I was as always torn between the two of them and their competing needs.

Shortly Ben got home and Isaac got into his room and there was a SERIOUS talking to. His consequence of no screen time continues today for the bowl, and may go on and on until we're certain that he gets the point. Later on I was in the kitchen and ISaac very slowly and tearfully walking up, placed his head on my hip (that's how tall he is) and started to cry. "I'm sorry mom!" he said, and I accepted his apology. Then he pulls out, "I've just felt so unwanted since Elias was born!"

Please. When I told Ben this he too said, "Oh, please."

Maybe there's a grain of truth in it, but I don't know. Elias adds a lot to his life, although it might not be so obvious now. ...I think he just heard that in a movie or something. It smacked of a prepared statement.

Anyway, all this is a huge pain in the butt under the best of circumstances, but here in month 8 of still unexplained dizziness it's really... I don't know. I'm out of words.

Better go. It's one of those common moments in which I'd really best lie down again, but instead I need to go and get Isaac from school. With no screen time today this is likely to be a long afternoon of a very tired mom and a very restless caged animal of a son. Or make that two. 

Spring would be good about now. To say nothing of a return to normal health.... or both!

There's a New Yorker cartoon I saw recently where a woman is sitting at a computer. Her husbnd walks by and asks, "How's the self-diagnosing going?" I can relate! Well, I'm in this phase of waiting eternally for the real diagnosing to happen, and meanwhile feeling pretty crummy. Yesterday I had a really bad episode-- got freezing cold, started to have visual weirdness, things glowing and rippling and was very weak and dizzy. Of course at the same time I was also home alone with two semi-sick boys. They came in and jumped on me now and then, but most of the time were fairly okay about my needing to rest.

I attribute yesterday's event to an attempt the previous night to eat out at a normal-- not insanely compulsively natural-- restaurant. It was our date night and Ben had grown weary of eating at the one place where I feel safe to eat, the Mustard Seed, which is really a natural foods grocery store with a cafe in the back, and the florescent lighting and view of shoppers is less than date like. So I decided to give it a shot. Also on my overall migraine diet plan, I'm nearing the phase of trying things to see what might be safe.

Answer: MSG is not safe. Although we tried hard to think of everything and order something safe, it was impossible. I got pasta with no romano cheese, only approved vegetables, and non-marinated chicken, but it came with a sort of broth around it that was not described and it was pretty certain to be MSG city. I decided to roll with it and see what would happen. When we walked out I found the complexity of the tile floor to be a real problem-- which it was not when I walked in, and then yesterday was no picnic. I had to finally take half an antivert and several other evasive maneuvers. So... live and learn. I also tried and failed at chocolate. But the young cheeses, like fresh mozzarella, cottage cheese, cream cheese, Laughing Cow and such, I seem to be able to get away with.

So I feel that the migraine thing is true. The diet is helping. I used to feel like that all the time, and now only when I screw up. The POTS thing also seems very true. I do get quite cold, my hands go white, my fingers shrivel up like I've been in a bath. As to baths, I learned the hard way that they are not a good cure for the coldness. Sure, they warm me up. But by pushing all my blood to my extremities, such that then there really really is not enough left for my brain. I had one experience a few weeks ago of trying the bath option and found that remaining conscious was a real challenge, as was getting safely to bed, whereupon I had to lie down a long time, with my heart beating like a rabbit's.

OVer the last few weeks, unfortunately, I've been reading too much on the internet. I was looking at this list of possible causes of POTS (there are 26 items on it, and they say "these are but a few of the possible causes..." which explains why they couldn't treat me until they find out more) and I found this thing called Ehlers-Danlos Syndrome or EDS. Now I'm getting myself all distressed and thinking I have it. I hope this is just another case of someone trapped in a house for three days with sick children (mildly sick, but too sick for school) who is reading too much nonsense and scared of her own shadow. But I got myself freaked out enough that I called the drs to tell them that I have a lot of the things that go with EDS.

Such as-- 1) some hypermobile joints. My knees and elbows hyperextend; I've had a toe dislocate roughly four millions times, and a dislocated jaw, and a ligament injury; 2) hiatal hernia (where the stomach actually goes up into your esophagus, this being what likely caused my chest pain a while back); 3) pregnancy problems including lots of crazy bleeding and miscarriages; then I found this part that said that people with POTS and EDS are "usually female and very pale..." What I don't have is this funky skin that goes with it, that is very stretchy and doesn't heal right. My skin is normal (although pale as the driven snow). But EDS type III doesn't have the skin... The reason it relates to POTS is the idea that basically the whole person is too stretchy. It's a collagen problem, with all the connective tissue. In people with POTS it's that the blood vessels in the lower extremities are too stretchy, and so fill with blood that rightfully belongs in your brain.

So last week I told both the neurologist's asst and the cardiologist's asst that I have all these things. (I also went through the list of other weirdness about me, like I have 8 wisdom teeth and a bicornuate uterus, which apparently are irrevelant). They both seemed to get what I was concerned about. The neurologist's asst asked me several follow-up questions about my dislocated jaw. But as for now they both basically said simply, "I'll tell the doctor." So... now I wait on that as with the rest, for the big reveal next week. I tried to put it out of my mind, but moth to flame, I keep learning more about it.

Okay, so let's all put this out of our mind. It's not a good thing to have and it's the last thing that I need at this point, so just forget it!! All right? Yes. Boom. It's forgotten. This whole conversation didn't happen. Phew. That's better!

As for the other sickly person in the house, Isaac, I took him to the dr on Tuesday. I was concerned that he had an ear infection or something else that would need treatment for him to pull out of the illness doldrums he's been in for a week. (He had a fever on Friday and Saturday, along with an ear ache and cough, and then just went into his pallor and lingering illness stage.) The dr said that his ears are fine, but he has what she termed a "two-week virus." She said he had to stay home from school yesterday (which was skiing day), and today Thursday would be a question mark. If not better for school tomorrow he's supposed to come back in. So yesterday Isaac was fairly subdued, for him. Which means that he would run around like a crazy person for a short time and then keel over for a long time to recover. He fell asleep at about 4:00 in the afternoon, and then simply would not wake up. I dreaded being up all night with him, wrung out as I was with my migraine episode. Elias too got into the act, coughing, having an ear ache, falling asleep at 5:30 and refusing to wake up no matter what happened.

Fast forward to 2:00 a.m., when surprise! Everyone woke up. Isaac at that point had slept 10 hours and was pretty thirsty and hungry. Elias woke up because Isaac was up. So we were all up. I got Isaac a snack and Elias some milk, and then spent the next two hours trying against all odds to get everyone to go back to sleep again, lest I die of exhaustion. Amazingly, they did go back to sleep about 4:00 a.m., but then, not amazingly, they were in no shape to get up on time and confront the frigid world and school. Elias's head is very congested and he's still coughing. Isaac is coughing and pale and seems to roam from couch to couch. So we are housebound again today, hopefully the end of it. ...

here's this from the big POTS web site :

The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.

Although on the up side this makes me feel less lame that I have to rest after ten minutes of tidying up. I just had to lie down for twenty minutes, feeling very faint, after changing the sheets on the bed. It reminds me of my friend Colin. He said, "One day it dawned on me that most people don't have to lie down and rest after simply walking across the room."  He went to the dr and learned that he had pneumonia. That's sort of like this. Like, hey, time to rest again?? I just rested! Now and then when I'm reading about POTS, the term chronic fatigue is bandied about. Apparently POTS is on the same continuum. But let's forget about THAT, too! 

Let's focus on this, tepidly upbeat ending to the description of POTS:

There are treatments for POTS symptoms which can be tailored to each individual patient, especially if an underlying cause is discovered. Researchers are attempting to identify and treat the mechanisms and causes of POTS. Studies show that most patients will eventually be able to stand up with fewer symptoms (Low, 2000). Most people with POTS can look forward to experiencing improvement with proper treatment.

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.