Allergy Testing, Day 2 and a New Ray of Hope

It was another early morning trip to Los Angeles today for the second round of testing for inhaled allergens, i.e. plants, animal & insect dander, and molds.  The drive went well both ways and, this time, no Check Engine light came on.  Whew!  I have to say that on the way home I was thinking how ironic it was that I had to drive into the bowels of the city, where the smog was just terrible today, for, of all things, inhaled allergens.  Doh.  My eyes, nose, and lungs are still burning.

The results of the testing so far are that I have a pretty significant allergy to cats and a moderate response to horses, grasses, sage, a few trees, cockroaches, feathers, dust mites, and two kinds of mold.  Dr. Derebery was surprised that I had cats and hadn't been feeling overtly allergic to them.  ))Shrug((

I had an opportunity to ask the doctor all of my questions and - surprise - they were all answered to my satisfaction.  It was nice to leave a doctor's appointment feeling satisfied.  I like her.

After going over my results, Dr. Derebery explained that allergies do not cause Meniere's disease.  She commented that there is a probable genetic link, which House Ear Institute is actively studying.  But, in the meantime, it is thought that untreated allergies are likely to contribute to inner ear inflammation and therefore worsen the symptoms of Meniere's disease.  For these, she prescribes allergy shots.  I asked her what the benefit of allergy shots are over using an OTC medication like Claritin.  She explained that most allergy meds don't reach the inner ear and that their mode of action is to block histamine, not to help the immune system become desensitized to the allergen(s) which is how allergy shots work.

While discussing the sensitivity to molds, Dr. Derebery commented that at House Ear Clinic they are implementing a new policy to instruct mold-sensitive individuals on a yeast-free diet.  Apparently, there is more and more evidence that there is cross-reactivity between yeast and mold allergens.  I will receive the diet instruction at my next appointment in two weeks, but, thanks to Google, I did a little reading and initially had the reaction of, "No way!" to the concept of a yeast-free diet.  But, after some deep breathing and more careful scrutiny, I realized that most of the websites are talking to people with chronic yeast infections.  In that case, avoiding yeast as well as sugar, caffeine, and a host of other foods is apparently recommended.  I don't think that will apply to me.  I hope not, anyway.  I think if that's the case, I can be patient and just wait for the allergy shots to work.

This brings me to the allergy shots.  I don't have all the details yet, but if I understood it correctly, I will have to take a shot a week for anywhere from 1 to 3 years.  Yes, years!  This is a big commitment.  But if it alleviated some of my symptoms, even by 50%, I'd be a happy camper.  Plus anything I can do that might be protective for my still (relatively) good ear, then I'm all in.  I have an appointment with my GP next week to discuss this with him, as the first six shots have to be given in a doctor's office and, clearly, I am not going to spend 5 hours a week in the car to get a shot.  After that, I have to find a nurse or either I and/or Phil will be trained to give the remaining shots.

In addition to the shots, Dr. Derebery recommended encasing our mattress and pillows in some of those special allergy covers, removing the dried sage branches from the living room, and, she agreed, getting the down sofa out of the house.  :-)

Next time: food allergy testing.  This should be interesting...

Uncle!

Some days I just want to laugh and cry out, "Uncle!  Uncle!"  I give already!

Oh, wait.  I can't.  In fact, I can't think like that.  Ever.  Not allowed.  I can't waste a single second wishing away something over which I seem to have little control over.  If I do, my thoughts might just spiral out of control if I allow them to.  So I stop these thoughts in their tracks.

I embrace - yes, embrace - Meniere's like it were another appendage of my body.  More like an extra, really fat, dimply, white, ugly thigh that I can't bare to look at, that I try to ignore as much as possible.  But it is a part of me, no matter what I think of it.

Because I do love myself, I must love Meniere's, too.  A dichotomy?  Perhaps.

Things have not been as bad as they've been before and, quite thankfully, I am not having vertigo or really even serious dizzy issues.  But my nose and sinuses tingle off and on.  My hearing is terrible with the tinnitus sounding like a loud, fuzzy blown-out speaker that my whole brain has to filter every sound I hear through even though it's only coming from my right ear.

And the brain fog!  My head feels like a fluffy cotton ball floating above my body, kind of doing it's own thing.  Well, to be blunt, I just feel plain stupid much of the time.  Doh, dee, doh, dee, doh...

So I carry on in my little stupor.  One minute.  One hour.  One day at a time.

Maybe tomorrow will be better.  I will be, am, grateful for every day that it is not worse.

Kinda Icky Day

Woke up feeling all inflamed in the head: nose stuffy, head and thinking "cottony", hearing muffled... well, you get the idea.  I know I'm preaching to choir here.  It's on days like these I am reminded to be thankful for gent as this would surely end in a half-day vertigo marathon otherwise.

Days like these remind me to be realistic about Meniere's.  There will still be bad days.  But then again, there will be another good day, too.  A little reminder to be grateful that this is all I have to deal with at the moment.  It's not all that bad, plus it makes me slow down to smell the roses on the thorn bush..

So today I am grateful for gentamicin, having the day off work, and no pressure to perform anything requiring deep thought.

I must add one last thing: I am still better off since starting famciclovir, too.  Days like these are not nearly as frequent nor debilitating as they used to be.

Tomorrow's another day...

ABC Classic FM - Mornings - What is Meniere's disease? Professor Bill Gibson explains

ABC Classic FM - Mornings - What is Meniere's disease? Professor Bill Gibson explains:

I have great hope and respect for this group.  This is a good listen from an expert on Meniere's disease.

Looking for a paradigm shift?

This quote popped up as my "Quote of the Day" on my home page the other day and I just thought what a perfect way of looking at life:

“Instead of complaining that the rose bush is full of thorns, be happy the thorn bush has roses.” -Proverb

I've said it before and I'll say it again: much of what causes unhappiness is related to our perception of a given situation, as well as our unrealistic expectations.

If we inherently expect that life is challenging, has "thorns", then the "roses" will all be pleasant surprises and easier to express our gratitude for.

I'm not saying we should walk around being pessimistic.  But, as it turns out, no matter how hard we try to live life by all the rules, things still happen that are beyond our control.  Logically, we know this.  Yet, when something unexpected and bad happens, we are still surprised, even incredulous.  It throws us for a loop.  Stalls us.

Our perception of the situation will likely determine how long we remain stalled, emotionally, at least.

I propose the next time something bad or undesirable happens, we take a deep breath, face it, do what we can to minimize the damage, accept what is beyond our control, and move on as best we can under the circumstances.  It may not live up to our expectations.  But on the other hand, in the end, it may exceed them.

Tiny Wisdom: Seeing the Good in the Bad | Tiny Buddha: Wisdom Quotes, Letting Go, Letting Happiness In

I like to follow this blog and this particular post speaks a bit to learning from our suffering.  Enjoy!

Tiny Wisdom: Seeing the Good in the Bad | Tiny Buddha: Wisdom Quotes, Letting Go, Letting Happiness In:

Triggers?

A quick observation.  Like many people with Meniere's, I have put a fair amount of effort into attempting to identify potential triggers.  Rather than reinvent the wheel, I started off researching those triggers commonly listed by other Meniere's suffers.  Things that tend to pop up frequently are salt, chocolate, alcohol, caffeine, stress, and lack of sleep.

After two years at it, I can say with confidence that I have not been able to identify a single thing that I do, don't do, eat, or don't eat that will bring on or prevent a Meniere's attack with any consistency.

Just my own personal experience thus far...

Allergy Testing, a la House Ear Clinic, Part I

I woke up at 4 am this morning after a fitful night of little sleep to make it to L.A. for my 8:30 appointment at the House Ear Clinic to have (more) allergy testing.  I was very tired on the 2-1/2-hour drive up there, but I had my four shots of espresso and the new Ryan Adams album download, Fire and Ashes (listen free here) to keep me company.  While there was little traffic, and I did arrive an hour early, my check engine light came on as I neared downtown L.A.!  This is not a part of town where one wants to break down, especially at 7:00 in the morning.  I had a moment of panic and ran through a quick contingency plan before I realized that there were no weird noises coming from anywhere in the car and that it was still moving forward at a normal rate of speed, so I just carried on.  I did text my husband once I got to the clinic, just to give him a head's up to stay close to his phone. Obviously, I ended up making it home safe and sound.

But I digress.  As you may recall I had scratch-test allergy testing this past spring which did not result in the identification of any specific allergies, just "nonallergic rhinitis."

I took these results to my doctor at House and he referred me to their allergy specialist, Dr. M. Jennifer Derebery.  I visited her last month and she recommended more thorough testing.  So thorough, in fact, that the testing spans four days!  I started today with the first of two days, half days really, devoted to inhaled allergens.  The other two days will be spent testing for food allergies.

I think I got somewhere around 50 shots in 2 hours this morning.  About 2/3 of them on my right, upper arm.  These shots are just like getting a TB test, but the results are read 10 minutes, not 2 days, after the subcutaneous injections.  Most were relatively painless, but a few stung a bit.  Apparently some are given at higher antigen concentrations and these are the ones that burn.  Good opportunity to practice meditation.

I don't have any final results to report yet, but the nurse did point out that my largest wheal was from cat antigen.  Sorry Maisy and Daisy!  The second largest wheal came from horses.  Some others included grasses, weeds, and feathers.  These all rated moderate to mild responses, so nothing to panic about.  But at least I am feeling a little less crazy for having unexplained nasal inflammation.  Though I do have a secondary theory that it could also be explained by a chronic inflammatory response to a theoretical viral infection.  But more on that another day.

I head back to L.A. next Tuesday.  I hope I get more sleep the night before this time!  Stay tuned for Part II...

Live for Today « Cancer

No, I don't have cancer.  At least not that I know of.  Cancer is on my mind, though, on this day following the death of Steve Jobs.  In the ensuing media coverage, I happened across an interesting article written by an oncologist detailing the experience of one of his patients.  I could relate to what he described she and her husband had been going through trying to fight her disease.  I thought others with Meniere's might relate to this, too.

Even though Meniere's is not a life-threatening condition, it is definitely a lifestyle-threatening disease.  The symptoms, at times, can be so debilitating that you begin to feel as if you are dead.  Or at least life as you know it is.  So when you are able to sit up and read again, it is easy to become obsessed with finding a cure.  It can become all-consuming, this search for relief.

The problem with searching for a cure for, or even relief from, Meniere's disease is the fact that it is classified as an idiopathic condition, meaning no one knows for sure what causes it.  In fact, there may be more than one cause.  And the cause, whatever it is, is likely multifactorial.  So discovering a cure is no easy task, especially for a layperson with only the internet at their disposal.  Certainly if there were an easy answer, it would pop up in a Google search, right?

There are, however, treatments for the worst symptom, vertigo.  The least invasive options available often result in short-term or incomplete relief.  The more permanent, yet destructive, procedures are, of course, destructive, meaning that one ends up with permanent hearing and/or vestibular loss.  And because the progression of the disease in an individual is very difficult to predict, it becomes a tough call whether or not to go that route and when.  Somewhere in between, it is easy to become lost in the land of complacency.  In that place, not only does the physical suffering continue but the mental agony can become overwhelming and all-consuming.

Back to the cancer patient.  In the beginning of the story, she had been afforded a relatively brief remission from her disease thanks to chemotherapy, during which time she resumed living a full life.  But, when the cancer returned a year later, threatening to take her life, her husband dove headfirst into finding a cure for the beast. Together they devoted excessive amounts of time pursuing and attempting alternative therapies which not only didn't cure her cancer, but also contributed greatly to her physical and emotional suffering.  At the end of the story, and by the sound of it, near the end of her life, the patient and her husband returned to the oncologist in despair.  He was struck by the amount of additional suffering they were experiencing through their futile attempts to cure an incurable disease.  The doctor pointed out that she was not living what life she had left to the fullest extent still afforded by her condition and, perhaps even worse, wasting what valuable little time she did have left to enjoy the simple pleasures of life.

While I am not a complete pessimist, I have to say that there has to come a time where one must find balance between hope and reality.  The trick is knowing where that line is.  Just as I don't believe anyone should suffer any unnecessary physical pain, I also believe one should seriously give consideration to whatever destructive procedure is available to end frequent, debilitating vertigo.  We can't help ourselves sometimes and become paralyzed by the fear of missing out on the path not taken.  We certainly don't want to intentionally burn any bridges for a future cure but, in the absence of a guarantee, we sometimes just have to accept the best the moment has to offer and carry on with life and all its imperfections.

Quote of the Day and a Little MM Wisdom for Posterity

Life can be wildly tragic at times, and I've had my share. But whatever happens to you, you have to keep a slightly comic attitude. In the final analysis, you have got not to forget to laugh.

Katharine Hepburn

Who didn't love the graceful and outspoken Katharine Hepburn?

I was just thinking this morning how one's happiness, or contentedness if you like, is really a function of one's expectations.

If we expect things to be easy, we will be sorely disappointed with just about everything in life.  Perhaps we are better off when we anticipate that we will face challenges, many, if not most, beyond our control or wildest imaginations.  

I find an enormous sense of peace when I embrace, or give a little mental hug to, something I have been fighting or wishing to be different.

House Ear Clinic Visit and a Day of Fun @ the Irvine Spectrum

It's been a busy day!  It started off with a 90-minute drive from San Diego to the Orange County House Ear Clinic location (more on that later), followed by an afternoon at the Irvine Spectrum.

We arrived at the Spectrum just in time for lunch at The Cheesecake Factory.  Notorious for the large portions, we laughed that it takes a family of five to be able to finish a meal there without being completely stuffed.  There was some sharing of food and we still came home with a doggie bag.

After lunch we took the kids to Dave and Buster's to play video games.  They were in heaven!  The place was empty and they ran from one game to another, racking up enough tickets to buy a few pieces of candy and a couple of chintzy plastic toys from China. I watched them play the coolest touchscreen game, Fruit Ninja.  Now I see it is also available for the iPhone. Uh, oh.

After D & B's, we headed over to the Ferris wheel for a bird's eye view of interstates 5 and 405, as well as the foothills surrounding Irvine.  It was a beautiful, albeit somewhat smoggy, So Cal day.  We topped it off with another new discovery, Pinkberry frozen yogurt.  Yum!!  I've certainly heard of it, just hadn't gotten around to actually trying it.  I got coconut with these funky little mango-flavored juice ball things.  I will be back.

Down to business now with the details of my visit with Dr. Wilkinson.  First off, I'd like to say he's a really nice guy but, as is the status quo just about every doctor, our time was rushed.  Despite our rather short time together, I still feel like quite a lot was accomplished.  I'll break things down by the questions I had for him and the resolutions:

Quote of the Day

If you're going through hell, keep going.

Winston Churchill

O.K.

'Switched at Birth': Meet Katie LeClerc and Sean Berdy, hearing-impaired stars - From Inside the Box - Zap2it

'Switched at Birth': Meet Katie LeClerc and Sean Berdy, hearing-impaired stars - From Inside the Box - Zap2it

Gotta Love Steven Wright

There's a fine line between fishing and just standing on the shore like an idiot.

Steven Wright

Back on Diuretics and Continuing Antivirals

I stopped taking diuretics about a month ago.  I had been on hydrochlorothiazide 25 mg once or twice a day for the past two years.  At my last appointment about six weeks ago with Dr. Harris, he suggested I discontinue the HCTZ and try 20 mg of Lasix twice a day instead to see if any of my symptoms improved.

I tried the Lasix for about three or four days, then I decided to just go off of the diuretics altogether for awhile and see what happens.  It didn't help that the Lasix distinctly tastes like burned rubber.  Yuck!

It's been a month and, honestly, the only difference I have really noticed is that I gained at least five pounds in the first few days and I feel all puffy.  I have continued to try to eat a low sodium diet as always which is probably in the ballpark of 2,000 mg per day, plus I have increased my water intake significantly to about 1-1/2 to 2 liters a day.

In the past few days, though, my right ear has been feeling a little sloshy and my left -good- ear has been feeling a little full, too.  This all happened on the diuretics in the past, too, so I can't say it is something new.  But it is disconcerting.  So I decided to hop back on the diuretic bandwagon.  I will give the Lasix a fair trial.

In the meantime, I continue on the Famvir 250 mg twice a day.  I am on Day #5.  Nothing new to report yet.  I have been feeling well overall this week with the exception of a couple of days of worse than usual balance and some mini-spins similar to those I had shortly after the last round of gent.  Since I had a pretty good attack last weekend and ended up with mild vertigo, how I am feeling this week is pretty typical of how I feel post-attack.

I go back up to House Ear Clinic on July 5th to see Dr. Wilkinson, the doctor I saw for my second opinion back in December and who kindly prescribed the antiviral therapy for me this week.  His colleague, Dr. Lorenz, returned my call to Dr. W on Tuesday and, in the course of discussing my history, he strongly encouraged me to go through with ENG (vestibular) testing.  Sigh.  I have to admit he gave very valid reasons for having the testing done, so I suppose I will agree to it.  I go back up to House on July 5th for a follow-up, so maybe I will call before then and see if they want to do the testing then.

So I continue on guinea pig status...

Day # 1 (6/14/11)

This may bore some people, but at least one purpose of this blog is selfish so I am going to keep a running diary of this experimentation with famciclovir (Famvir).

I picked up my prescription this afternoon and I am to take 250 mg twice a day for 30 days.  I do have 2 refills, but I am supposed to make an appointment to see Dr. Wilkinson in 3-4 weeks.

I took the first pill this evening with dinner.

As a reminder, I am coming down off of four days of an attack building (significant brain fog, buzzing and gurgling in my ear, and exhaustion) that culminated in a mild vertigo attack last night.  I started feeling really off-balance about 8pm yesterday, so I took 4 mg of diazepam (Valium) and within 30 minutes felt much better.

Today the buzzing in the ear is gone, though I have my baseline high-pitched ringing - not too loud.  A little pressure is still there.  And this evening I am feeling the typical imbalance that I experience after vertigo.

I also have a dull headache now, about 2 hours since taking the famciclovir.  Nothing major, but I do see now that the label on the pill bottle says, "may cause headache."  Coincidence?  Probably.

Ready for a good night's sleep now.

Embarking on a New Experiment (Kind of)

After nearly a week of feeling like crap and then having a mild vertigo attack last night, I broke down and called The House Ear Clinic this morning.  I went to their Orange County clinic in December for a second opinion as I struggled with whether or not to continue with gent treatments.  Ultimately, I did continue with gent and have had good control of my vertigo since the end of January, though I have had a couple of mild episodes since that time - this week's being the worst.

About two years ago, shortly after I was diagnosed and failed to improve on diuretics and a low sodium diet, I brought a couple of studies in to my OTO appointment to see what he thought.  That day, he happened to be out of town, so I saw one of his fellows.  The fellow was visibly impressed with the conclusions of these studies and willingly prescribed a course of acyclovir for me which was consistent with that in the studies.  Within a week of starting the drugs, I noticed a significant change in the pattern of my attacks.  During weeks two and three of the therapy, I had no vertigo.  This was the first time since my first vertigo attack that I had gone that long without the spins.

According to the study protocol, by the 4th week I began tapering down my dose of acyclovir very gradually.  Unfortunately, within 48 hours, the vertigo returned in force.  I called my doctor's nurse and the fellow agreed to extend the high-dose therapy for 3 more weeks and lo and behold I experienced the same pattern: no vertigo on the high dose but, within 48 hours of tapering, the vertigo returned.

When I followed up with my regular OTO after my little experiment, he poo-pooed what I had observed.  He said he was familiar with the literature, but that it was not conclusive and he believed what I had experienced was simply a placebo effect.  I disagreed, but he was not willing to prescribe anymore antivirals for me.

Still being new to MM at the time and having confidence in him based on his bio and the high praise I had heard from several other local ENTs, I proceeded with dex injections and ultimately gentamicin injections, the latter finally offering me semi-permanent relief from the vertigo.  During this time, I pursued the second opinion at House and it was during that consultation that this new OTO suggested a trial of Famvir, a newer class of antiviral medication that is supposed to be superior to acyclovir.  Because I was mid-gent treatment, I opted to see the gent through first.

Yet, through it all, I still feel like there is something systemic to my MM and I often feel like my body is somehow in overdrive trying to fight something off.    Just this week, I went through the usual host of feeling like shit, ear buzzing, terrible brain fog, and complete exhaustion.  As usual in the old days, last night it culminated in a vertigo attack, albeit a mild one.

So I got on the horn this morning to House.  I spoke with one of the nurses and asked if the doctor I saw six months ago would be willing to prescribe a course of Famvir for me.  I explained I want to transfer my care up there and that I would make an appointment whenever he suggested.  Within an hour, I got a call back from one of his colleagues, as he was in another clinic today, saying he would gladly call in a 3-month course of the drug for me.  He recommended I make an appointment with the other OTO in 3-4 weeks as, by then, I should know if it is helping me or not.

Wow.  So nice to be heard and validated.  As much as I respect my usual OTO here, I often feel as if I have to do my own research to understand what my options are and then advocate for them.

I am excited to try the antiviral approach again.  At least if I don't notice any improvement, I can be sure I gave it the best college try possible.  Will keep you all posted!

Did I Do Too Much or Is It Just Coincidence?

One of the conundrums of Meniere's disease is that symptoms seem to come and go willy-nilly.  As we all know, people post all kinds of things on the internet (duh) and people with MM, or who claim to know something about MM, are no different.  A cursory on-line search will turn up a long list of potential triggers purported to set off an attack.  In my own personal experience, I have not for the life of me been able to identify any single potential trigger that consistently brings on my set of most annoying symptoms.

As I previously posted, today was the last day of school for my kids.  As per my usual M.O., I signed up to man one of the annual Olympic Field Day events.  I spent little over an hour repeatedly yelling instructions at, and rooting on, group after group of kiddos racing broomstick horses.  The next hour and a half, I ran back and forth, following my own kids from one event to the next, yelling and rooting.  Then, after returning home briefly for a quick lunch, I realized I was feeling terrible.  Exhausted, ear buzzing, and - sigh- more off-balance than usual.  This would normally culminate in vertigo, but I am crossing my fingers and toes that the gent is continuing to hold and it will just pass without incident.

I managed to pull myself together, pick the kids up from school and take them out as promised for ice cream and to buy a new video game.  I made it.  Whew!  But sure feel icky now.

So was it all the yelling?  I don't know.  But it is on my mind and, as usual when I get to feeling terrible, I start mentally running through all the possible "triggers" and how to avoid them.  Anything just to stop this cycle.  But it is mentally exhausting and I continue to work on acceptance.

Couldn't Resist This Quote...

Beer is living proof that God loves us and wants us to be happy.

Benjamin Franklin

Summer's About to Begin

I know the summer solstice is still two weeks away, but the last day of school is only two days away.

Typically, I sort of dread the end of school.  Yes, it's great not to have to pack lunches, do homework, and race around after school for practices and lessons.  But it also means we have to find ways to keep the kids entertained seven days a week.  How does the saying go?  "Idle minds are the devil's playground?"  Whoever said that had children!

But this year, I am feeling better than I have felt in two years.  In the past, the relentless attacks alternating with hyperacusis pretty much made every level of noise excruciating.  The echo of constant loud voices filling the house either made me a raving lunatic or forced me to retreat to my bedroom with the doors closed.  Not a fun mom.

However, currently my vertigo and most of my Meniere's symptoms are pretty well-controlled.  While the kids will be with the babysitter three days a week, I plan to keep them engaged with their friends and out-of-doors the other four.  I am looking forward to spending days at the pool, beach, museums, and wherever else the wind blows us.  I want the kids to have a fun, safe summer exploring their relationships with each other and their friends.  I wish things were still like they were when I was a kid, riding bikes all over the neighborhood and fending for ourselves, but they are not.  But I can still foster as much independence as possible and give the kids a chance enjoy these carefree times as much as possible.

The Unveiling: Paint is Done

2009

This day has been a long time coming.  Paint is an amazing thing.  It still needs some bling, i.e. house numbers, new lighting, and some pretty accessories.  A new garage door is on the list, as well.  But we are just thrilled with the way the paint turned out.

Today

Another Take on the New MyPlate and Federal Farm Subsidies

Another one of my favorite sources for perspectives on food and nutrition, in addition to Marion Nestle's website, is The Physician's Committee for Responsible Medicine.

This week they have once again brought to the surface the extreme politics behind the U.S. Dietary Guidelines for Americans with this stark image:



You can read more about it here: Breaking News! USDA Replaces Food Pyramid with MyPlate | PCRM.org.

Keep in mind that the vast majority of grains produced in this country end up on our plates in the form of highly processed, nutrient-devoid substances resembling food.  The government secretly, or not so secretly,  hopes these are the grain products we will purchase and consume when they tell us to "eat more grains."  Ironically, the minimally processed grains that are actually good for us have far smaller profit margins and are therefore produced in far smaller quantities resulting in higher cost to consumers.  Though that interpretation of cost depends on how the cost is calculated.  If one considers the true end cost, including the dollars spent on healthcare to treat diet-related diseases, then the choice is a no-brainer.

Just imagine how the collective health of the country might look if the government was putting our tax dollars toward subsidizing produce growers instead of the meat and dairy industries, as well as the production of the sugar and oil that go into the processed foods this country is consuming by the bushels.

Instead our government prefers to ride the merry-go-round of promoting the production of disease- and obesity-causing foods which then contribute to the billions of dollars that must be funneled into our healthcare system to treat diet-related conditions like diabetes, heart disease, and cancer.  What's wrong with this picture? Nothing if you raise cattle, corn, or are a top exec at a health insurance company.

USDA's New Food Plate - Beautiful!

Marion Nestle, one of my nutrition heroes, wrote today on her blog, Food Politics, about the unveiling of the USDA's new Food Plate image.  Finally, a very simple graphic that anyone can understand.  As posted on Nestle's blog, even the "instructions" that go along with it are easy to read and follow.


Previous attempts by the USDA at educating the public about nutrition ended up looking something like spaghetti with convoluted messages that attempted to avoid roiling politics within the food and agriculture industries.

The new Food Plate doesn't entirely avoid industry politics, but it is less in-your-face.  It is important to remember the fine line the USDA must walk.  Not only is the USDA responsible for establishing dietary guidelines for Americans, they are also charged with promoting the heavily subsidized U.S. agriculture industry.  Think corn and all of its dozens, if not hundreds, of by-products, as well as dairy, and meat producers to name a few.  These industries are represented by some of the most powerful lobbies in country and have billions of dollars behind them.  Makes it quite difficult for the USDA to even suggest that perhaps meat and dairy are not necessary daily components of every American's diet. Many would argue they should not be.

But I digress.  I think the new Food Plate is about as good as it gets coming from a government agency as wrought with conflicts of interests as the USDA happens to be and for getting the well-balanced diet message across to Americans of all ages.  Good job, USDA!

A Little Funky After a Couple of Good Weeks

The past two days my inner ear has been making a lot of bubbling, gurgling, and popping noises typical after a good attack of vertigo.  Of course, I didn't have vertigo.  Now, I am not getting cocky and I don't want to give the gods any ideas that I need another lesson on the unpredictability of Meniere's even after gent.  I get it.

But this afternoon I developed a touch of brain fog and a strong desire to lay my head down and go to sleep.  Remember that feeling in afternoon college classes?  The feeling when you desperately want to lay your head down on a desk and sleep right through the lecture du jour?  Your eyes insist on taking extra long blinks?  That feeling.  Then, a couple of hours later, the bee in my ear started going to town and that finally culminated in a mild case of bobble-headedness for an hour or so.  Seems to have passed... whew.  But left me a little deflated as I have had a couple of really good weeks.

There has been a lot of talk about the possible role of vasopressin in Meniere's disease over at Meniere's.Org and it has me wondering if it also happens to play a role in nasal congestion.  I wrote about the results of my allergy testing recently and that I seem to "simply" have nonallergic rhinitis.  I sure wish I could remember all that physiology I tried not to sleep through in college!  Can't help but wonder if that is somehow linked to my Meniere's and, if so, what the hormonal pathways are.  I tried Googling it a bit and just kept coming up with papers on toad bladders.  Yuck.

Rather than being told, "We don't know" what causes Meniere's or nonallergic rhinitis, for that matter, I wish the doctors would elaborate by adding, "But here are a couple of possible explanations that scientists are looking into."  Otherwise when I try to imagine what is going on in there, my mind just wanders over to the same black hole it goes to when contemplating how electricity actually works or where to start and stop a geometry proof.

C'est la vie.

Kitchen Before and After Pictures

Gotta love the two different linoleums

While on the subject of remodeling projects, a few pictures of what we did in the kitchen.  Note the new floor, too. 

Some New Paint Coming...

2009

We bought this poor, lonely, neglected house two years ago. It was built in 1969 and it remained in its original state 40 years later, down to the orange shag carpet. It had been vacant for most of the past 15 years - long story. But, as we had lived in the house across the street for the previous four years, I had often gazed at this sad house, needing a family, and felt sorry for it. Finally, the owner had to let it go before the bank foreclosed on her, so we swooped it up.

Today

Indoors, so far we (mostly my husband, to be fair) have put in new flooring, painted the kitchen cabinets, painted every room, except the bathrooms, (the living room, kitchen, and family room twice!), and ripped out a wet bar.

In the yard, Phil ripped out the juniper bushes, grass, and several palm and cypress trees, and replanted the entire front yard with native California plants. It looks, and smells, absolutely beautiful! But the house itself still looks pretty pathetic. See what I mean?

So tomorrow is the big day! Prep and painting begins. The Sherwin-Williams colors will be Quiver Tan, Universal Khaki, and Kilim Beige. The front door will be Rembrandt Ruby. I am dying to watch the transformation and see the final product.

Plants that were 1-gallon buckets a year ago

I will post some after pictures soon.

Grief and Coping with a Chronic Illness

I have found a lot of support, as well as quite a bit of distress, from visiting a certain on-line Meniere's forum.  Here people from all over the world and in all stages of the disease share their experiences of learning to cope with the unpredictable and often debilitating symptoms we MM-ers generally all suffer: ringing and pressure in one or both ears, episodic vertigo, and progressive hearing loss.

One observation I have made is that we have all experienced the loss of our otherwise normal way of life.  Even for those of us who eventually find something to control the vertigo, there is always the very real fear of it returning at any moment.  This is not exactly an unfounded fear to have and therefore it is virtually impossible to avoid when making plans that might lead us out of our comfort zones.   This might be hard for someone who doesn’t have an unpredictable, debilitating chronic disease, but anyone reading this who also happens to have Meniere’s Disease will know what I mean.

Having Meniere’s Disease results in a certain, and often significant, loss of freedom.  In addition to having the inability to commit to any long-term plans with any degree of certainty, many of us pass through stages of the disease where we cannot even commit to plans for tomorrow, next week, or next month as we never know when we may be curled up in the fetal position for hours at a time, waiting for our world to stop spinning.

This loss of freedom can produce wild, bewildering emotions that are probably not even understood by the person experiencing them, much less by those around them who are watching helplessly.  Everyone knows that someone who has lost a loved one experiences grief, but it is perhaps less common to recognize that loss of any kind actually results in the very same stages of grief that were identified by Elisabeth Kubler-Ross in her 1969 book, On Death and Dying.   I thought I’d elaborate a bit on each stage as I have experienced it since being diagnosed with this chronic illness, as well as what I have observed from a distance through reading about the experiences of others on-line.

The first stage of grieving is denial or isolation.  Once I had a name, a diagnosis, for what I was experiencing, the only natural thing for me to do next was to Google it!  I searched my symptoms repeatedly, in different contexts, in order to possibly fit myself into some other category that could be neatly treated with a simple surgery or prescription drug.  I knew I had Meniere’s Disease, but you always hear about that one-in-a-million person who was misdiagnosed and suffered needlessly.  I certainly didn’t want to be that person.  Yet, everything I read pointed back to Meniere’s and the complete lack of understanding of what caused the condition and, worse, how to successfully treat it.  Reading about the experiences of others was not reassuring at all.  Despite studying the sanitized websites devoted to the disease which stated that 80% of people respond well to conservative medical management and that vertigo typically improved with time, I kept coming across stories of people who did not get better, rather they eventually became completely disabled from complete, or near-complete, vestibular loss.  Initially, I also kept my diagnosis from co-workers and colleagues, fearing it would come back to haunt me.  I was going to get better within the next couple of years, I believed, and I didn’t want this period in my life to keep showing up on my resume.

The second stage of grieving is anger.  Rather than getting angry that I had Meniere’s Disease itself, I got angry that it was stealing time away from me.  I was losing between 15 and 30 hours most weeks to vertigo.  I channeled my anger at forcing myself to do anything and everything I could during the hours and days I was free from full-blown vertigo.  Even during the hours and day I did not have had vertigo, I typically still felt terrible.  My equilibrium was off, my hearing distorted, and I just had a general feeling of physical and emotional exhaustion.  But I refused to let this Stupid Disease take any more time from me than was absolutely necessary.

The next stage is bargaining.  By the time I hit this stage, I was already well-established on the standard low-sodium diet and diuretic regime that is the gold standard of symptom management for people newly diagnosed with Meniere’s Disease.  For me, unfortunately, it was not working.  So Phil and I researched alternative treatments.  I tried antiviral medications, prescribed reluctantly by my doctor, vitamin and herbal supplements, and chiropractic treatments.  All the while I continued to strictly limit salt in my diet and to take my diuretic.  With each vertigo attack, and there were many, many, I couldn’t help but come to believe I just hadn’t been good enough, strict enough at following the treatment du jour.  I was eating too much arginine and not enough lysine while on the antivirals, I must have forgotten to take one of the multitude of supplements I was using, or perhaps I turned my neck the wrong way or slept on the wrong pillow after a chiropractic adjustment.  I thought, “If I just do better, I will beat this.”  I promised myself I would do better.

Depression, the fourth stage of grieving, can suck a person under.  No doubt I experienced it to some degree in the beginning.  Depression and frustration.  Nothing was working and I didn’t want to give up fighting the Beast, but I was running out of options to turn to.  It is depression, I believe, I read that many people on the Meniere’s forum are most struggling with and it really troubles me.  The words “ending it” come up from time to time and you know it is a cry for help.  But the only person you can reach out to is the person crying because their name is something like “Wolverine” or “Mickey Mouse.”  You can’t call their spouse, friend, or even the police because you don’t even know what city they are in much less their address.  To make matters worse, Meniere’s Disease is an invisible condition, so some people report lacking support from their friends and family and instead are accused of faking their symptoms to get out of work and family functions.  It breaks my heart.

The final stage of the grieving process is acceptance.  What a freeing feeling to finally say to myself that I have Meniere’s Disease and that it will probably continue to rear its ugly head off and on in its unpredictable way for the rest of my life.  Yes, I have lost some freedoms, but in the state of acceptance I am free from the fear.  I embrace the ringing in my ear as a normal part of my body now.  I don’t like it, but I don’t like my thighs, either.  In their current state, I can deal with both. 

While I have not had a severe vertigo attack for four months now, I did learn to power-meditate through them in such a manner that was, in a weird way, liberating.  It was like climbing Mount Everest and being cold, miserable, and bleeding the entire struggle to the top, but yet the beauty at the peak of the mountain made the journey (almost) worthwhile.  I also know from experience that the passage of each stage can be fleeting.  I can take several steps backward with each little setback.  I don’t take my current state of relative comfort for granted, but I am also not trying to waste a moment of it on worry or fear over something in which I have no control.

Reading the experiences of others on the Meniere’s forum, I have observed each of these stages being expressed by the various posters to the site.  Sometimes it is clear which stage a person is going through, sometimes not.  I have had the privilege of watching some navigate through each stage and come out the other side an “expert.”  But all too often it seems to me people are getting stuck in one of the stages and are really struggling to move forward in the process.  Sometimes it is anger, other times it is bargaining (typically the newbies, like I once was), but the most disturbing to me are those drowning in depression.  I worry the disease has won, taken over a precious human life.  They seem to no longer be able to see the forest through the trees and have lost hope for finding their new normal.

Based on my experiences so far with Meniere’s Disease, I have come to believe there is little I can do to control the course and symptoms of the disease through any action of my own.  I could never nail down a trigger such as something in my environment, diet, or lifestyle that significantly altered my symptom pattern.  The only thing so far that has controlled my vertigo with some degree of consistency is intratympanic gentamicin injections.  It is believed to control vertigo by destroying a percentage of the vestibular hair cells in the inner ear.  Many would call this treatment a drastic measure.  I call it a godsend.  It is not a cure and, as a result, I do have balance problems that will probably be lifelong (and would likely have occurred as a result of the natural course of the disease itself, anyway), but I am here and living life to the fullest.  Not the life I used to have, but the trade-offs have been valuable in their own, strange ways.

Quote of the Day

Ok, I know this is "cheat-blogging", but having fun with it.

I find this quote interesting because there are an awful lot of extraordinary claims about Meniere's treatments out there.  I am not one to judge as I myself have tried quite a few of them.  Desperate times call for desperate measures, no doubt.  But desperation can also make a person vulnerable.  So just some food for thought from a real astrophysicist which I presume is either one step above or one step below a rocket scientist.  Either way seems like good advice from a very smart guy.

Extraordinary claims require extraordinary evidence.

Carl Sagan

Quote of the Day

The universe is not required to be in perfect harmony with human ambition.

Carl Sagan

I might add that neither are our bodies...

Words to Live By

Make it a rule of life never to regret and never to look back. Regret is an appalling waste of energy; you can't build on it; it's only good for wallowing in.

Katherine Mansfield

We Are

We were channel-surfing last night and came across an interview with Tom Shadyac, director of films like Ace Ventura, Patch Adams, and Bruce Almighty. He was talking about his new documentary =>

The Film | I AM The Documentary | Official Site

I couldn't help but see a parallel between what he has been through and what many of us with Meniere's have felt at times. Coping with a life-altering condition can end up resulting in a paradigm shift that can lead to something very positive and worthwhile.

Here's a clip from the site basically summarizing the part of the interview I saw:

But, at this critical juncture, Shadyac suffered an injury that changed everything. “In 2007, I got into a bike accident which left me with Post Concussion Syndrome, a condition where the symptoms of the original concussion don’t go away.” These symptoms include intense and painful reactions to light and sound, severe mood swings, and a constant ringing sound in the head. Shadyac tried every manner of treatment, traditional and alternative, but nothing worked. He suffered months of isolation and pain, and finally reached a point where he welcomed death as a release. “I simply didn’t think I was going to make it,” he admits.

But, as Shadyac wisely points out, “Death can be a very powerful motivator.” Confronting his own mortality, he asked himself, “If this is it for me – if I really am going to die – what do I want to say before I go? What will be my last testament?” It was Shadyac’s modern day dark night of soul and out of it, I AM was born. Thankfully, almost miraculously, his PCS symptoms began to recede, allowing him to travel and use his movie-making skills to explore the philosophical questions that inhabited him, and to communicate his findings in a lively, humorous, intellectually-challenging, and emotionally-charged film.

And a clip from The Oprah Show.

My New Ride

Well, I took pictures on my Blackberry which is way too much of a pain to download to my computer, but I got a bike (!) for Mother's Day!

The kids have been really into riding ever since Spring Break when they rode all around the campsite where we camped out.  Since then their Dad has been riding them up to the store and around the neighborhood, but they all wanted me to be able to go along with them.  So I jumped up on my husband's bike last weekend, testing the waters after a 25-year hiatus and Meniere's disease, to see where my balance was.  I actually stayed vertical, so it was decided right then and there that "Mom needs a bike!!!"

We bought a bike this morning from Costco's new line, Northrock.  It is kind of like a dirt bike-light.  I rode it up and down the aisles at Costco before pulling the trigger.  After a few adjustments, we took a spin up to Starbuck's, Big 5, and around the 'hood.

Riding on the street is pretty good, but sidewalks and tight spaces are a little trickier.  I can't be sure if it is because I literally have not ridden a bike for 25 years or if it is subtle balance deficits from the MM.  I imagine it is the latter.  I feel like I am missing some fine motor skills in the balance department.  We figured riding a bike could do nothing except improve them, so I will keep at it.

Now I just need to get a basket 'cause it's hard to be a gangsta' with a basket on your bike.  This is a shout-out to Nicki! ;-)

Yoga and Rock Climbing

Last night I took Erin to a Girl Scout "spa" event for about 100 girls.  I was feeling pretty good at first, but being in a large auditorium with all the noise and motion made me start to feel quite off kilter.  Having just had vertigo earlier in the week, I wasn't sure where this was going so I quickly took 2 Valium (2 mg each) and things settled down nicely within 30 minutes.

Part of the program involved learning some yoga moves.  At first, the moms were just to sit in the back of the room while an older troop led the younger girls.  But at the end they asked all the moms to come up on the stage for the final round of poses and stretches.  I felt a little panicked as several of the poses involved balancing on one foot.  Try as I might, I just couldn't hold the tree pose; kept falling to my bad side.  Well, not surprising.  Though, I must admit, it made me want to get back into yoga as I did feel pretty good afterward.

Then today Connor attended a birthday party at an indoor rock climbing place.  After watching the kids for a bit, I thought, "I can do this!"  So up I went, about 3/4 up the wall until my arms turned into spaghetti.  I was a little disappointed I didn't get all the way to the top, but it felt great to try something new and completely outside of my comfort zone.

These past two days have made me feel so very thankful for modern medicine.  Had I decided to wait out the course of this disease and not taken what some might consider drastic measures, I am certain I would not have been able to attend these events much less participate the way I did.  I am so utterly grateful and do not take one day of freedom from vertigo for granted.

Vertigo Back?

I can't believe I have to say this, but I had a mild vertigo attack Tuesday morning.  My ear had been acting up the previous couple of days with buzzing and fullness which is always concerning.  Then, as I was eating breakfast, the walls started to wiggle and my balance went to sh*&.  I immediately took valium and laid down.  Fortunately, it only lasted about an hour and then I was able to get up and shuffle around the rest of the day.

I called for an appointment with my OTO who, consistent with his usual m.o., was booked this week and out of town the following two.  I could have gotten in to see his proteges, but I really only want to see the Big Guy in the event an major decisions need to be considered.  Plus, as this happened a couple of times after my first gent shot, too, it just may pass and become a non-urgent issue.  I will know in the next 3 weeks if the vertigo is back in force, or not.

In the meantime, my ear is popping and gurgling.  For those with MM, you know what I mean, that deep, inner ear sloshing of fluid that cannot be seen or drained.

I continue to have high-pitched ringing in my "good" ear and the past two or three mornings it has been feeling clogged, too.  This always freaks me out, but I think this has been happening all along anytime it's evil twin is acting up.

On a side note, fascinating reading about the possible correlation between vasopressin and Meniere's Disease here.  Just about every time I get vertigo, I notice I also "diurese", to put it politely.  Besides being very annoying since just turning my head is torture, much less being able to repeatedly get up to go to the bathroom, this symptom has always baffled me and made me think there is something more systemic going on.   The observation that people with MM have increased levels of vasopressin has been documented in several studies on PubMed.

Hope, hope, hope...

I Am Allergic to...

Nothing!

The allergist tested my skin for trees, grasses, molds, dust mites, and various animals and I reacted to nothing.  He then did a second test for dust mites, similar to a TB skin test, and again, nothing.  In addition, he looked at the cells from my nasal passages (sorry - gross to think about), which were inflamed by the way, and again saw no signs of allergy or infection.

The official diagnosis is Nonallergic Rhinitis.  The doctor said it can be caused by particulate matter in the air and gave me some samples of an antihistamine nasal spray to try called Patanase (olopatadine hydrochloride).  He also said if Claritin seemed to help me, I could resume taking that, as well.  But he thought the nasal spray would be more likely to work.

So I cannot attribute my Meniere's symptoms to allergies.  That's a relief, I suppose.  Or, at least, it rules out one more thing that I can say I have tried.  Since I am doing pretty well right now and the brain fog has been better this past week, I won't rock the boat and will just continue to ride this wave.

I Am Not Crazy!

I have not been visiting the Menieres.org forum much lately.  Been too busy and also just needing a break from the collective misery.  But tonight I was browsing a few recent posts and found someone there who started a thread today about memory problems.  This, of course, got my attention.  As I scrolled down, I found these two links to articles describing ME!

http://www.menieres.org/forum/index.php/topic,3672.0.html

http://www.menieres.org/forum/index.php/topic,3672.0.html

I found both articles to be super thorough and they put perfectly into words how I feel these days.  Especially the following quote contained in the first link:

"Unlikely as it seems, vestibular damage can cause memory problems. Here is why. When you damage your vestibular system, keeping your balance is now largely a conscious effort, not the automatic effortless procedure it once was. Consequently, those areas of your brain that you once just used for thought and memory, now must constantly work on keeping you balanced. As a result, your memory may suffer. You may grope for words when talking. You may easily forget what is being spoken about during a conversation. You may be easily distracted. You may have difficulty comprehending directions or instructions. You may have trouble concentrating and may feel disoriented at times."  YES!

I will still pursue the allergy testing, but am so relieved, in a weird sort of way, that I am not completely crazy.  Hallelujah!

Brain Fog and Allergies?

I have been writing for awhile now about how I have had terrible brain fog since sometime around the end of January or first part of February.  Iinitially, I attributed it to the effects of the gent shot I got in December, thinking it was just a result of brain-retraining. 

In addition to the slo-mo sensation and terrible forgetfulness, I have also had off and on pressure across the middle of my face.  But there has been no congestion or pain with it, so I was a little baffled.

Many people with Meniere's report that they suffer from allergies, too, but that their Meniere's symptoms improve significantly when they identify and treat their allergies.  Since I have been at a loss as to what else to do about the brain fog, I thought, what the heck?  I might as well look into this a little more.  Besides, if I went to the doctor just complaining of my otherwise vague symptoms, I figured they would just look at me, shrug their shoulders, and send me on my way.  So I scheduled an appointment next week to have some allergy testing done.

In the meantime, yesterday I thought I might as well take one my husband's Claritin to see what would happen and much to my amazement within a few hours I felt like a new woman!  Not only did the pressure in my face go away, but the fog lifted, too.  I took another this morning and same thing.

So the results of the testing will be interesting.  I will have to stop the Claritin on Saturday as it will otherwise skew the test results.  But I can't wait to find out what, if anything, I might be allergic to.

Brief Up-Date

I haven't been much in the mood to blog lately.  Life has been keeping me busy which is a very good thing.  I am grateful I have been able to keep up with it, despite this pesky brain fog. 

I also just finished reading Siddhartha by Herman Hesse and am now reading a book called Living Buddha, Living Christ.  These two books have motivated me to get back into a regular pattern of meditating and being very present in the moment.  I think this has lifted the brain fog noticeably.  Perhaps part of the foggy feeling I have been experiencing has been related to my being distracted by never feeling normal.  That being said, being present and calm has not lent itself to the right mindset for blogging.

I have also been contemplating where I ever got the idea that life is supposed to be easy.  Or rather, why I (we) are surprised when things don't go along as planned or expected.  If you look around, really look, it is easy to see that many, many people suffer from a million kinds of ailments, circumstances, or series of unfortunate events.  I imagine in all the generations leading up to the last one or two, and certainly still in many parts of the world, that no one expected life to always be pleasant and easy and so were maybe more resiliant to the inevitable setbacks or challenges that presented themselves.  To me, anyway, I used to have the preconceived notion that life should be pretty easy most of the time.  I am learning, though, that really I should be grateful for the times it actually is easy and to not be so surprised that most of the time it is not.

As the Buddha said, "Suffering (aka discontentment) is the result of wanting things to be different than they are."  Or, paraphrasing Jesus, good things come to bad people just as often as bad things come to good people.  But, He goes on to say, do not worry about where your next meal will come from, for God ensures that the plants and animals do not go hungry and certainly He will provide for you.

So I am living in the moment and gently bringing my mind back to it when it wanders ahead.  And peace is here, now.

Happy April Fool's Day to You, Too!

Very funny, Mr. M!  I can't believe what you have put me through these past two years.  A few weeks after that first whirling attack on April 1st, 2009 I learned I had MM and I just couldn't imagine that I would still be dealing with it 2 years later and, now I know, for the rest of my life.  Granted today I am better, far better, than I have been in the past and for that I am utterly grateful. 

But "it" never goes away, "it" is always there in the form of tinnitus, hearing loss, and periodic dizzies and currently significant brain fog.  This is still surreal...  And "it" never leaves my mind.  Fear.  Surrender.  Fear.  Sadness.  Gratitude.  Loss.  Fear.  Exhaustion.

Reinvigoration.

Dietary Supplements: To Take or Not To Take?

I have copy and pasted an article from faqs.org about dietary supplements.  While I was researching a blog post on the same subject, I came across this well-researched article and thought, "Why reinvent the wheel?"  I hope anyone using, or who is considering using, dietary supplements (vitamins, minerals, herbs, and the like) will read this article.  As a disclaimer, I have used a variety of supplements over the years, but I have a certain amount of trepidation about them mostly because of the lack of regulation in the U.S. supplement manufacturing industry.  I have highlighted some key statements if you would like to cut to the chase...

The demand for dietary supplements in the United States catapulted what was once a cottage industry into a $14 billion per year business in the year 2000. In 1994, the U.S. Congress formally defined the term dietary supplement as a product taken by mouth that contains a "dietary ingredient" intended to supplement the diet . The dietary ingredients in these products may include vitamins , minerals , herbs, amino acids , enzymes , organ tissues, glandulars, and metabolites . Dietary supplements can also be extracts or concentrates, and may be found in many forms, such as tablets, capsules, liquids, or powders.

Round Two - Stomach Flu

Oh, the joys of parenthood.  Poor Connor spent all day Sunday vomiting.  Fortunately, it was a "daytime" illness and we got a good night's sleep.  He and I got a day off together on Monday so he could rehydrate and get some food back in him.

As per our family's M.O., one child gets sick, then a few days later the other two come down with it.  So today was the day.  I got a call from the school about 1:00 this afternoon to come pick up Phillip.  He has then proceeded to throw up every 30 minutes for the past 3-1/2 to 4 hours.  Poor guy!  He has been sleeping for the past hour, hope his tummy holds for a while now.

Who will be next?  Erin seems to be the hearty one.  Even when she does get sick, she seems to get a milder version of whatever the boys had.

I hate to sound selfish, but when the kids are throwing up I can't help but go into high-anxiety mode worrying that I will get sick.  Crossing my fingers and using a lot of soap and hand sanitizer.  However, ever since getting this Stupid Disease, I have vomited so much and been so miserable I think having the actual stomach flu might be a breeze.  That being said, I hope I don't find out!

Good News, Bad News (or maybe not or maybe I am in denial)

The good news is that my minispins have been virtually nonexistant the past several days and I think the brain fog has lifted a little, too.  But I am still having problems with my short-term memory.  I will even forget my train of thought mid-sentence.  Well, more so than I usually do.

101 (not really) Things I Have Tried

You can read the following post at a fellow MM sufferer's blog where I was a guest blogger.  She was kind enough to add some helpful links in the text, too, that I was too lazy to do myself.  :-)  Check it out at http://picnicwithants.wordpress.com/

When you are miserable and living in fear of leaving your home because of recurrent vertigo, you will try almost anything to feel better and get your life back.  From the day I was first diagnosed with Meniere’s disease, this is how I have felt.  Initially, I was confident I would respond to “conservative medical management.”  The odds were in my favor if you believe the statistics that 80% of people with MM do, in fact, manage pretty well on diuretics and a low-sodium diet that includes little to no caffeine or alcohol.  Even though salt, caffeine, and alcohol in the form of a glass of red wine with dinner were the cornerstones of my otherwise healthy diet, I was up for the challenge.  Bring it on!

Unfortunately, despite a complete overhaul in my diet that resulted in an almost ten pound weight loss, vertigo episodes lasting 8 to 12 hours continued to plague me anywhere from two to four times weekly.  During this time, my dedicated husband scoured the internet and came up with some alternative treatments for me to try. 

Two Steps Forward, One Step Back

It is still early in the recovery phase since my last gentamicin injection.  It has been about 9 weeks since that time, but only 6 weeks since I started feeling the good and not-so-good effects of it.  No more vertigo being the positive outcome, but a sense of disequilibrium (pretty mild this time around) and general bobble-headedness being the necessary evil.

I have had a few days recently where I felt almost normal.  When I don't feel normal it is because my head feels disconnected from my body and my ear is buzz-sawin' to the max.  My eyes seem to have a delay in registering with my brain what it is I am seeing when I turn my attention from one point of reference to another.  And, after riding in, or driving, a car, it takes a minute or two for my body to stop moving.  It is the same sensation I have experienced after disembarking from boat rides - getting my land legs, so to speak.

Still hangin'

I don't have much to report from the Meniere's front.  That is good news.  Early last evening I had the closest thing to vertigo I've experienced in six weeks or more.  My ear suddenly started ringing very loudly, then I started to feel the creepy, wobbly, spinny sensation deep in head that usually precedes a full-blown vertigo attack.  But after an hour or so, it eased and by bedtime I was feeling back to my baseline.

My baseline these days is an occasional mini-spin, now down to only a couple of times a day.  My balance is much better and the tinnitus, for the most part, is just a constant, low hum.  I feel very little pressure in my ear now, too.  In fact, we just had a rainstorm roll through yesterday which, in the past, would have made my ear feel like it was going to explode with painless pressure.  But now, little to nothing.

So I am still grateful for gentamicin.  Just the other day I read a post on a Meniere's forum I follow from a guy who suffered for something like eight years with debiliating, weekly vertigo before trying, and getting relief from, gent.  That could have been me.  He was afraid to do anything "permanent" or risk hearing loss (a small risk with the low-dose method) as so many people have been warned not to do anything destructive.  Instead he suffered, in my opinion, needlessly.  But now he is preaching the wonders of this treatment, having his life back and perhaps wondering why he waited so long.  Yes, no destructive treatment should be gone into lightly.  You need to be sure you know what you are dealing with as Meniere's can be, and often is, misdiagnosed.  But with the right tests and doctors, there is hope and the potential to control the worst of the symptoms.

I still promise to post more about different treatments I have tried and read about.  But as this disease has taken so much of my life already, I hate to give it too much more time now that I can function again.  I do know that someone else might benefit from my experience, so I will try to get back here soon and write more.