Fine Young Fauves

Okay, almost a month into my new life as a Cymbalta user, I'm on the right track, but my experience has been thus far marred by illness.

After I made the switch from bedtime to morning pill-swallowing, I sort of had to start over on the side effects – grogginess and mild nausea. That seemed to let up after three days or so, and then things were looking promising. I had a decent day in there. Then I got slammed by a horrendous stomach flu. I spent a full day throwing up in most hellish fashion, and then was flat on my back exhausted for two more days. Just barely getting on my feet after that, Elias came down with the croup. I was up half the night a couple nights in a row tending him. Then Isaac got sick. Then I got what they had too, in my weakened state no match for another nasty virus. This one was sinus-oriented, and I've been neti-potting like a fiend with slow results.

At the moment, after a full week of total abject exhaustion, and splitting headaches, I'm again starting… just starting… to come back to the living a little bit. Today… normal?? We just got a note home from school warning us that strep throat is stalking the children, and as I was dropping Elias off he began to complain about a sore throat. That is to say, pray for us!! It's a race between evil germs and the arrival of spring. 55 sunny degrees today and bulbs starting to peek out of the layers of wet leaves. Possible salamander migration at the next rain. C'mon spring! Deliver us.  

Meanwhile, I did go and see my neurologist. Indeed, "my neurologist" is a phrase I never, ever expected or intended to use in my life. Can I tell you that I'm in love? I LOVE this man!! I'm practically Tom Cruise jumping on Oprah's couch about it. He, and he alone (well, except vestibular therapist Vince, whom I also love dearly) seems to understand my situation. Not just understand, but care! And is showing a stallwart determination to actually help me, hang in there for months to come, work the problem until I'm fixed.

First off, we went through a detailed questionnaire in which I rated my dizziness in all sorts of ways, situations, types of dizziness, and so forth. the result was that compared to when I last saw him in early December, things are all much , much better! Am I normal? Can I go on with life now? Not quite… no… but far enough along the path that we can now tell and measure that it's heading the right way. That means that this diagnosis shows clear signs of being right, and this treatment (low-dose Cymbalta, plus high salt, minus all dietary migraine triggers, plus medical legwear) is actually making inroads!

So… hurray! There's a light at the end of this tunnel, and if it coincides with the end of a long, dreary, cold, and dizziness-filled winter, all the better! In celebration of this promising situation, the kids and I have started several flats of seeds. Isaac is growing his favorite veggies– cucumbers, peas and basil. Elias is growing things that have big, easy to handle seeds, pole beans and pumpkins. I'm growing flowers– giant pansies and purple salvia and white evening primroses.

The neurologist reviewed the what-the-hell-happened question– horrible virus last spring attacked my inner ear, causing nerve damage, which led to an inner brain chain reaction of migraine syndrome and also POTS. I asked him to explain the relationship between the migraine and the POTS, and he said frankly, "We don't know." It could be that the POTS causes the migraine, because low blood pressure chronically deprives the brain of blood flow. Or it could be that the migraine causes the POTS, because the brain ultimately controls your heart and blood pressure. Or it could be that they are just coinherited, on the same gene, or common to the same sorts of people. Further study is going on even now to try to figure this out.

I vented a little bit about my horrible, depressing, alienating experience with the Syncope Clinic and the cardiological goddess. I told him, "I had to wait for almost three weeks for this letter, and then when it came I couldn't understand a word of it. It told me nothing." He said, "I couldn't understand it either– it was pure jibberish!" (Now I don't feel so bad…) He asked me, "What did she finally diagnose you as having?" I said, "Beats me– I thought you'd know. The only thing approaching a diagnosis that I saw was that on the prescription for my support stockings it said, 'Chronic venous pooling.'" He looked up my tests and said, "It didn't look like there was that much pooling in your hemodynamics testing." I said, "Well, be that as it may, that's the only thing I could ever find out." He said, "Well, she prescribes high salt and support stockings for everyone, so there's no indication in that." And we just moved on, giving up on that whole, time-consuming, expensive, pointless dead end.

On a lighter note, he added that "I've treated people with just POTS with Cymbalta. I've treated people with just migraine with Cymbalta. But my FAVORITE use of Cymbalta is for people like you– with both." He was quite impressed that I was able to rid myself of my shoe-related dizziness by simply (? It's not at all simple) changing my diet. He said, "We changed your diet and fixed your feet–? How is that possible?" And then went on to answer his own question. "Well, your brain controls everything, and if it's malfunctioning there's no end to the symptoms you might have. And if it's functioning better, things can miraculously resolve."

Hallelujah. My brain is in good hands now. I can't wait until I'm finally done being sick and can really REALLY see how the Cymbalta is working…  

Okay, my new life as a daily prescription drug user is … up and down. Not settled in yet, and still tinkering. Overall I LOVE Cymbalta. It has created a sea change here that I can only hope will continue to trend in the positive direction. While still an exceedingly low dose, I have had these glimpses of normal life returning, and a general lifting of burdens from my shoulders. Last Thursday, I felt so awesome that I put on an old Macy Gray CD and danced around the kitchen will making Hungarian goulash. This is much like the Old Me, rather than the New… Dottering… support stocking wearing… afraid of falling… 40 years my senior ME of recent months.

But it's not perfect, and there have been a few start-up issues. At first it was that when I took it at bedtime, it made my heart race and thump loudly for two hours while I was trying to go to sleep. After that I would get to sleep and do okay, but I didn't like that part. And I found that I was hopelessly drowsy in the afternoons. Also I recalled that the doctor had actually, months ago, told me to take it in the morning, and that it would give me some energy to get through the day (it was his asst who told me to take it at night when she set up the prescription). Then I found out that a couple other people I know on this drug do take it in the morning. So after a week of heart thumping, I decided to make the switch.

I transitioned over the weekend, and started with the morning shift on Monday. Groggy!! how much sense does this make, that it kept me up, but taken by day made me groggy? Well, not right away. The mornings would be okay, but then I'd hit this slump in the afternoon that was like being in a quagmire. With Elias running rampant and Isaac far away at school needing to be picked up, I would find myself so so so sleepy. Must… get… up… And remember, no caffeine on the migraine diet…

Also complicated matters were several non-Cymbalta factors: 1) Isaac had the stomach flu on Friday; I was under the weather myself fighting it off; Elias got it on tuesday night and woke me up at 4:00 a.m. to start the day; 2) Ben had evening things all week, so was not home until 9-10 pm several nights running, which meant I had 16+ hour days to contend with, M, T, W; 3) I had a urinary infection that defied even the 100% pure cold pressed cranberry juice that is not for the faint of heart, and I had to go to the dr and get antibiotics on top of everything else. So… yes… GROGGY! Exhausted, and struggling onward through life as I know it. Monday night, this translated into actual severe dizziness. The kids were leaping in all directions as I attempted to tame them into bed single-handedly. Difficult! I was actually staggering and spinning by the 10 p.m end of that ordeal.

But I guess what was noteworthy about Monday was that it was an isolated situation. Meaning, I was not dizzy 24/7. Only under duress. Last night I had another noticeable dizzy spell while attempting to shop for groceries, along with utter brian fog and confusion. Should I buy the cage-free eggs? How cage-free are they really? This sort of problem stumped me for way too long.

I think by switching to mornings, I had to sort of reexperience the start-up issues I had in the first place. But before they lasted maybe three days, and today, Thursday, I'm feeling pretty up and at 'em. I even had a sense of needing to walk outside. It's a lovely sunny morning, and dazzling white snow. I found a path through the woods that was actually plowed well, and walked for maybe 15 minutes. My legs were dying for movement! I can't live with this exercise ban forever! However, after a slight incline and a slight increase in heart rate, I found that I did get light headed and had to stop. I guess it's not something I'm going to be able to reclaim over night.

Still, it's been less than two weeks, and we are definitely on the right track! I'll let you know when I declare victory.

In other news, Isaac has a bad case of 7-year-old-boy disease. Sadly this translates into a steady supply of monologue on the infinitely-fascinating topic of ones "nuts"!  This topic has endless variation, too. Especially when it comes to recounting implausible stories from friends of situations and ways they have been HIT IN THE NUTS. *snicker* Similarly, Isaac and some other buddies were all called to the principals office, because they decided it was fun to hit each other in the… yes. So much so that it was explained that if any more nut-hitting went on at school, parents would be called and they would be sent home for the day.

Meanwhile, Ben was reading a cookbook and found a recipe for lamb testicles. The recipe very quaintly referred to the parts in question as the "frivolities," which made even us giggle like schoolboys. So Ben began a campaign, with my full support, of changing the nomenclature. In our family, we don't say nuts, we say frivolities. Then I recently overheard Isaac in the back seat of the minivan, talking to his little buddy Jens: "Then a guy got hit in– frivolities is another word for nuts– right in the FRIVOLITIES!!" Gales of schadenfreude from the little boys, and good cheer on my part– Ben's campaign actually worked!

I don't feel at all like Jimmy Buffet. I am not living in Margaritaville, as promised. Actually I feel more like David Byrne. Less pothead, more speed freak. But even that exaggerates it. I'm honestly feeling… okay.

I started on Saturday night with a little tiny green capsule that represents a major change in strategy. I took it as directed at bedtime, after a meal containing protein. They are starting me on the lowest possible dose, and still the initial twelve hours were pretty intense. I felt like i had had about ten cups of coffee. My heart was overly loud and emphatic as I was trying to go to sleep. And sleeping was no easy feat. I slept badly from midnight to 5:00 a.m., and then finally got up. I felt something like a caged animal, pacing back and forth in the kitchen.

But I knew there would be some start-up issues. And the package is covered with ghastly side effects, including bold type warnings about the risk of suicide (really in children, teens and young adults) and how PATIENTS USING THIS DRUG NEED TO BE WATCHED. I looked up the clinical trials, though, and the numbers were reassuring. The incidence of actual suicide attempts on this drug were less than 1/1000. And you have to remember that most people are prescribed it for depression, so, the person might have been pretty troubled anyway. So far I haven't had any untoward impulses or thoughts of self-destruction of any kind. I'm just dealing with a little bit of the insomnia, nausea and lack of appetite.

Meanwhile, there's the steady question running through my mind: am I less dizzy? Is it working?

It's only day three, but I can tell you this, I walked up to the mailbox on Sunday, feeling good, steady and refreshed. I did not need to lie down for a half hour afterwards, either. I've noticed that when I stand up, I'm braced for the momentary darkness and spinning that I've grown so accustomed to, and it doesn't seem to be there. Or much much milder. I feel that I have quite a bit more energy. I need to lie down less, and can be up and around much longer. It looks to me, too, that my blood flow is better. My fingers are pinker and more normal looking (not shriveled and bloodless), and overall I feel warmer. 

I'm afraid of hoping too much and being cast low again by another disappointment, but I do feel hopeful. Let's just give it a week and see, but I think the trend is promising.  

At some point last summer, Isaac learned an inappropriate finger gesture a camp. He tried it out on me one day, yelling, "You're sucking man!" as he very tentatively erected his middle finger.

I gave him a time out, but also I didn't want to totally get hysterical, as I felt that would be counter productive. Then he tried it out on a kid at school and we got a note home about it. "Isaac used an inappropriate finger gesture at school today." Apparently he and his little friend were doing it to each other on the playground. I asked whether they were mad at each other at the time, and he said, "Nah, we were just goofing around." But they both got in trouble for it. Since then Isaac has really pretty much stopped it. The problem now is Elias.

I think what happened there is that he was practicing his sign language letters. For a while there he was constantly trying new things out and showing them to me, and I'd say "that's an R" or "that's a T." Well, it seems that one night when he was with a baby sitter, his experimentation led him to  use that gesture by mistake.  If it had been me, I would have not responded much , but just  suggested that he use his pinky to make an I, or whatever. But the babysitter  FREAKED OUT. She apparently gave him quite a lecture and a time out, which he took pretty hard (understandably, as he had no idea why he was in trouble). And the fall-out from this is something we are still dealing with. From the babysitter's reaction, he learned that this is something mean, that you do when you're really really mad. Unfortunately, because he's three, he's really mad a lot of the time.

Last summer we endured a couple months of constant, "you dummy!" and threats of "I gonna punch you in the face!" It was very tiresome, and we tried different approaches. WHat I learned from that experience is that giving him time-outs or scolding him or indeed reacting at all, only makes it worse. The best defense is to ignore the behavior, give it no attention whatsoever, and then it will ultimately fade away. This is difficult when you're being flipped off all the time.

Picture if you will: a small cherubic blond child is hiding under a pile of blankets. His mother comes in and says kindly, "Elias, come on, time for bed." There's no reply, only a little dimpled hand arises from the blankets. Yes, it's a one-finger salute, delivered wordlessly with a plump middle finger.

Advice?? Anyone?

It won't come as a surprise that I've been pretty blue this week. Although the compression socks have helped more than I expected, I'm still struggling. On Wednesday, for science, I decided to time myself and find the new boundaries of what I can and can't do.  I was feeling pretty good, and decided to attempt some housework. I carried a load of laundry upstairs, folded it and put it away. I stripped our bed and put on clean sheets. I made the boys' beds. And stuff like that. I started flagging soon, but hung in there, because I wanted to know where the edge really was. At just about the half-hour mark, I started literally seeing stars. I started obviously staggering and stumbling, and felt so lightheaded that I simply had no choice but to lie down.

So… the migraine diet, PLUS, high-salt, high-fluids, PLUS compression socks, gets me about a half hour of upright time. Granted this is an improvement, but still far, far FAR afield of what a normal mother of two extremely active young boys needs to be able to handle. Like 8-10-14 hours? That would be more like it. I was expecting a call from the nurse at the cardiologist's office, and didn't get one, so I called them and left a message. The next day, Thursday, I was having one of those really horrible days where I just felt that through all my activities it was taking a lot of effort not to burst into full on crying. And then the nurse called– and made it much, much worse.

I told her about my test, and about the half-hour limit. I guess what I wanted from her was something along the lines of "Oh! I didn't realize how miserable you are! I guess we really should offer you some sort of treatment!" But instead, she said, "Well, that's too much for you! You can't DO THAT. You have to lie down after ten minutes!" That is to say, accommodate myself to the sickness, rather than trying to make the sickness go away.

I think I must have sounded rather desperate when I said, "But… But what I'm trying to do here is get back to some sort of normal life!" And she said, "Honestly, there's no easy way to do that."

This news hit me with a thud. What I suddenly realized then was that when, on Christmas Eve, they found me positive for POTS on the tilt-table test, it really was horrible, horrible news. I didn't really get that at the time. People had been telling me I had POTS for a while, at least Vince had, and then the neurologist, too, had said he expected "orthostatic hypotension" to be a part of the picture. This may sound strange, but when I got that news I was actually sort of happy– because I thought, "Hey, they've finally figured out the problem– and now they can fix it!!" Apparently not.

So I said to the nurse, "But what about exercising? I used to be able to actually work out."

She said, "No! We don't want you doing that. You can't do that! It's too much for you! The doctor suggests you simply lie on your back and gently move your legs."

While she didn't come right out and say, "honey, just get yourself a wheelchair and a lap robe because THAT's your speed now" she definitely implied it! Coupled with the refusal to offer me any sort of medication, and the bleak prognosis "It will be a long, long slow recovery," this resulted in a profound sense of hopelessness on my part.  Am I at 43 supposed to accept that I have to advance by 30 years and check myself into a rest home right now? While I do like knitting, this is not what I want.

Which brings me to the Cymbalta.

Let's review the options at this point:

1) Try a low dose of Cymbalta, the only thing actionable anyone is offering me right now. 

2) See more doctors, get more tests and opinions. Go and get evaluated for Ehlers-Danlos and Raynaud's SYndromes (the nurse said they DO want me to do that.) Find an internist to help me manage this situation.

3) Try all the alternative therapies in the book. Try accupuncture, Chinese herbs, homeopathy, etc. (I'm already trying lots of vitamins…)

4) Accept this as my new reality.  

Then last night, despite my attempts to follow the migraine diet to the letter, I had an episode that was really bad. Dizziness… and visual weirdness. Rippling and glowing things in the room. The sensation of the couch rocking on board a ship. That type of thing. Hypersensitivity to the sound of crashing race cars and an acute dislike of being climbed on and tickled. I've gotten so now I can really tell the difference between POTS dizziness and migraine dizziness and this was all about migraine. 

Ben and I had a long talk about this situation. What it boils down to is that I have tried a lot of other things. I am very strict about the migraine diet, and it really does limit my life a great deal (very little eating out, no eating food at other people's houses that I didn't bring myself, etc., etc.). And still it's not enough. I've been ingesting crazy amounts of salt. I'm doing the stockings. The alternative therapy idea sounds like just another project to me right now. I'm EXHAUSTED by this project as it is! I can't fathom trying to find another doctor of any kind right now. And as for acceptance, I refuse to accept this. I want and need my life back.

So.

This morning the neurologist's asst. called and said he wants to see me March 10.  She said the smartest thing would be to start taking a very low dose of Cymbalta now so that we can discuss it when I come in in a few weeks. I told her of my fears about it, and asked for an exit strategy. She was understanding, and said that when I want to get off it, there's a two-week phase-out period. I asked about other options that are not SSRI's and SSNRI's, (cymbalta is the latter) and she said, honestly this is really the best drug for my situation. She said it really has helped a lot of people. I gave her the number of my pharmacy and she said she would call it in. 

They wore me down. Or maybe it was circumstances. But I can't go on like this, and I can't go on wondering whether there really is a pill out there that could help me. I'm going to give it a try. If I start writing crazy manifestos, diatribes, screeds, situation comedies or beat poetry, this will explain it.

It's no fun to not be able to eat chocolate on the most chocolatey of all holidays. But that doesn't mean your sweetie has to go without treats. Here are a few ideas to make the day a little more festive.

But first a word on white chocolate. I think that Talmudic scholars will spend centuries debating the meaning of the phrase, "White chocolate (no cocoa) is okay." This remark is found in David Buchholtz's Bible-like "Heal Your Headache," whose migraine-trigger-avoidance diet is widely revered by migraineurs/euses the world over. The problem with this statement is that white chocolate, by federal law, has to include at least 20% cocoa butter, or else it is not white chocolate. It doesn't include cocoa solids, but that's not what Buchholtz said. He said, "no cocoa." But the other faux white chocolate, which contains no cocoa butter or solids (I found some "classic white" chips by Ghirardelli) contain all sorts of other possible pitfalls and no-nos. Like whole milk power and non-fat dry milk, both of which could have MSG sneaking in there. On the other hand, all the real white chocolates I could find (and the faux also) seem to always contain soy lecithin, which again could hide MSG. When grappling with this conundrum, and highly motivated to get some sort of chocolate-like substance back into my life, I just tried it. I can handle either fairly well, and the real seems to be slightly better. Taste test wise, I actually like the Ghiardelli better than the Green & Black, despite their attractive vanilla bean bits. In any case, you may have to just ask your migraine-suffering honey whether he or she can handle white chocolate, as I think that's what it comes down to.  

Biscotti

I've been experimenting with biscotti options and have come up with a few keepers. In the absence of both chocolate and nuts, your go-to flavoring would logically be the citrus, lemon department. But you can't have citrus either. This annoyed me quite a bit, as it seemed to systematically rule out all the possible recipes I could find. In fact, lemon has maintained a high rank in the things that I miss. Then one day I came upon something that suggested that lemon verbena could be substituted for lemon zest in many recipes. So I began to search for lemon verbena. I could not find it either fresh or dried in any store anywhere. I could not even find the seeds to grow my own (although I later learned it doesn't propigate from seed). Finally I ordered two little plants from an online herb purveyor, Hirt's, and now they are growing on my windowsill. Which brings me to the following recipe, modified from Alice Waters. 

White Chocolate, Ginger and Lemon Verbena Biscotti

Preheat oven to 350.  

Mix together and set aside:  

2 1/4 cups whole wheat pastry flour

1 teaspoon baking powder

Beat well together in large bowl until smooth:

3 eggs at room temperature

1 cup sugar

Then add the flour mixture and stir well. Then stir in:

1/2 cup minced fresh lemon verbena

3/4 cup minced crystallized ginger

3/4 cup chopped white chocolate

Form the dough into two three-inch wide, ten-inch long logs on a cookie sheet lined with parchment paper or Silpat. Give them some room between them as they tend to spread. Try to keep them narrow. If they get too wide, the biscotti will be too long and will break. Sprinkle with coarse or Turbinado sugar on top if you have some handy.  Bake for 25 minutes, or until lightly golden. Remove from oven and let cool about ten minutes on the sheet. Lower oven to 300. Gently lift cooled loaves to cutting board and slice into 1/2-inch slices. Place the slices back on cookie sheet (you may need another sheet also), cut side down. Bake for ten minutes at 300, turn slices over one by one, and then bake on other side for another ten minutes. …. and voila! Beautiful, delicious, specialness.

Variation…

Omit verbena and ginger. Add one scant tsp cardamom to flour mixture. Add 3/4 c no-sulfur dried cherries and 3/4 c white chocolate.  Yum!

And there's this, modified from the Magnolia Bakery Cookbook by Jennifer Appel and Allysa Torey:

White Chocolate, coconut, cranberry cookies 

Preheat oven to 350. 

Mix together:  

2 1/2 cups whole wheat pastry flour

1 tsp baking soda

1/2 tsp salt

Cream together:  

1 c (2 sticks) butter

2/3 cup sugar

2/3 cup packed light brown sugar

Then add:  

1 large egg, room temp.

2 T milk

1 1/2 tsp vanilla

Add the flour mixture and blend well. Then stir in:

6 ounces chopped white chocolate

1 cup sweetened shredded coconut

1 cup no-sulfur dried cranberries

Drop by rounded teaspoons onto ungreased cookie sheets. Bake for 10-12 minutes until lightly golden.  

My honey gave me some white chocolate pretzel haystacks this morning and that was a lovely surprise. Happy Valentine's Day all!

XO

Amazing news…

After 8 months of dizziness… including two months of low-salt and diuretics, after an MRI of the brain and internal auditory canals with and without contrast, after two different electronystagmographies (water and air), the revolving chair test, balance testing, after four months of vestibular therapy, after a full neurological consult with a spinal specialist, after three views of neck x-ray, (to say nothing of the ER visit for chest pain and then the barium swallow), after a full neurological consult with a specialist in unexplained dizziness, after the tilt-table test, and after the nuclear testing of hemodynamics, blood volume and autonomic testing… 

… turns out all I need is new socks. Yes. These fantastic socks, which strangle my legs from the knee to toe region, will compress my veins and keep the blood in my brain and make me not dizzy. And now I will get my life back and the world is new again.

Would that it were true!

[Collapses into hopeless sobbing.]

Let me back up a few days. On Tuesday, when I still didn't get the letter as to the results of the radioactive blood testing, I called the office. My dear friend Chynna said that lo and behold the letter was done and would be mail that afternoon! So that looked good for Wednesday. I sat in a snow bank near the mail box. And when it didn't come I was crushed once again. Thursday my mom and I were laying odds. Her money was on a hormonal malfunction of some kind (specifically adrenal exhaustion), mine was on Ehlers-Danlos Syndrome and overly stretchy blood vessels. But, whatever it was… soon we would know!

I felt sort of like a high school senior hoping for the fat envelope. I thought it would contain brochures about my condition, like "Ehlers-Danlos Syndrome and You" or "Living Well with Mitrial Valve Prolapse." But at the very least I expected a) a diagnosis; and b) a treatment plan of some kind.

And when it finally arrived on Thursday afternoon, and I saw at once that it was a skinny letter, I immediately knew that I was not going to get what I needed. I trudged the long snowy hike back from the mailbox dreading the total lack of anything useful that I would find in it, and then, that's indeed what I got.

It was the Al Capone's Vault of medical letters. It was not addressed to me, but to the vestibular doctor who kicked me to the curb months ago and who I will (one hopes) never see again. It was written all in doctor language that I could barely understand, even when I looked up all the terms. And in effect it said nothing… There was no ta-dah! We figured it out! Most of my tests were normal, which I guess is good. I mean, they didn't find something horribly wrong. So that's a good thing. Enclosed was a presciption for support stockings, too, but even that was only there because I directly asked for it. The dr had mentioned that I should have them after I flunked he tilt-table test, but at the time, let's face it, I was still having so many neurological– shoe-related– problems and had just barely mastered wearing any shoes at all, the idea of support hose seemed totally undoable.

But on Tuesday when I talked to Chynna, I said, hey, let's revisit that. I think I can handle it now. And she said they would throw a presciption in for me. (I have prescription socks!!)

What stunned me the most about this horrible letter was the total lack of interest in helping me or communicating with ME in any way. I was an afterthought. I was cc'd on the bottom. That's it. So I called Chynna back an said, "Well. I got the letter. What's missing in it is any sort of explanation as to what's causing my dizziness and any sort of plan for treating it." I was restraining the desire to scream at her, but I can see that she really does understand how awful this all is. She said quietly, even sadly, as if she knew this all along, "I'll have the nurse call you."

The nurse helped a bit. She explained that my blood moves a little bit too quickly around my whole body, and also that it does pool in odd places, like my abdomen, my pelvis, and my legs, when it really should be in my brain and heart. Also my heart beats a little bit weird at times. She allowed that all this might make me feel "crummy." But… I said… what do I do about it? She said to try the socks. I said I would but I could hardly see how the socks would change my life. She said she would talk to the doctor and tell her I'm miserable and see if there's anything else that might help.

Then she added, "Also you should be evaluated for Raynaud's Syndrome and Ehlers-Danlos Syndrome."

I said, "Well, who do I see for that?" (Like I need another SYNDROME!!! Or two!! For which there is no cure!! )

She said, "Hm…. I think it might be rheumatology… I'll check. You should see your primary care doctor…"

I said, "You mean, go see the doctor I see when I have a sort throat?"

She said, "Well, that would be a good place to start…"

I said, "TO START????!??!?"

[Leaps up to stomp on phone with both feet.]

[Blacks out from the sudden change in position.]

[Hits the floor unconscious.]

[Okay, not really. But I was pretty pissed.]

So, yesterday I went on an epic quest for the compression stockings. Rite-Aid. No. Walgreen's. No. They had some, in racks, that required actually kneeling on the floor to look at. Hecka dizzy. No luck. I then remembered this little pharmacy near us, the new sign for which was the subject of a full page article in our local monthly paper. It's the sort of place filled with old people things– walkers and commodes with handles, etc. Still, they didn't have the stockings I needed. But they did know the right place to send me.

That was my fourth pharmacy of the morning, but it was the place to be. I was dizzy as hell by the time I got there, which struck me ironic.They had a huge wall of compression stockings, and more in the back. They had a trained fitter. As I stood there filling out their little form, I started to black out. I caught myself and said, "Do you have a chair or something? I can't stand up this long." (the form was a one-page affair and very simple). They brought me into a little room and told me to take off my socks and boots. Cathy, my fitting specialist, measured my calf, ankle, and the height of my knees. Then she went away and brought back the stockings and some huge bright blue rubber gloves.

It was time for my "donning lesson." With great effort, wearing the huge nubby rubber gloves, she coaxed the strangulation hose onto my legs. You can't just put them on. You need a lesson. If you do it wrong you can tear them and make them run, or, worse, you can end up with it acting as a tourniquette. After she got one on, she had me try. It managed it to her satisfaction and she was willing to release the $60 socks to my care.

This lady DOES believe that within a week, they WILL change my life. Apparently the make my ankle into a funnel that shoots the blood back with the force of a fire hose. Wouldn't it be amazing if it DID work?? I have my doubts. I was wearing them all day yesterday and was dizzy as can be. But honestly, seeing as I have no other ideas at the moment, why not try it? Cheap compared to the mega-thousands we've spent on this so far. And no side effects, other than feeling that I've just aged by three decades. (It's one thing to wear them under my wool socks in the winter, but the summer…? Shudder.)

Meanwhile, the nurse said she'd call me back on Tuesday. I also plan to call the neurological god back at that time to revisit the Cymbalta. It occurs to me that while I didn't have depression at the start of this ordeal, now I kind of do. Perhaps that's the idea. They give you the depression through a Kafkaesque never-ending medical ordeal, and then they can give you a drug to cure it! But honestly, a magic pill is looking more and more and MORE attractive at this desparate point. And the neurologist, at least, seems to have some sort of interest in actually making me better. It's so refreshing!!

I did say I would try to migraine diet for two months, and see if it I was still dizzy. (and I am, and it's been ten weeks.) And I did say I was let the cardiologist route play out, and now apparently it has done so. So now I'm giving the socks a week to change my life. If the socks plus high salt minus all migraine triggers equals reasonable levels of normalcy I will then shift my focus towards accepting my dimished and greatly aged self. If not… I don't know. I have a lot of concerns about the Cymbalta or anything in that arena, but perhaps they can be addressed. It's hard to forget the words of trusted Vince, "We've really seen it help a lot of people."

Meanwhile, last night at bedtime I was gripped with a horrible realization: Cathy forgot to give me a doffing lesson. How do I get these crazy things off???

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.