A Day in the Life with Meniere's

Strength When There is Nothing Else

2012-02-25T10:47:00.002-08:00

And the second thing I wanted to post this week is a quote I saw in, of all places, a wallpaper app for my tablet. Lol! But it struck a chord with me so here it is:

You don't know how strong you really are until strong is all you have.

I have found this to be true twice in my life so far.

The first time was when I had three babies under the age of two. There was, and still is, no break from parenting. But in those first two years, my husband and I summed it up in one word: Relentless.

Of course, the second time I had to rely on "strong" was living through the bowels of Meniere's disease. I am happy to say I've had a reprieve, but the first two years of that experience, too, were Relentless.

In both cases, I had no choice but to succumb to reality. I had to embrace what I could not change. The only things I could change were my expectations. I don't want to say I lowered them, because really it was much harder to rise up to the respective challenges and face them head on than it would have been to just let them consume me.

When being "strong", we have to acknowledge and accept our limitations. Trying to fight them takes valuable energy that can be put forth instead in reevaluating what our expectations for our life are and then have the ability to let some of them go and rebuild new ones. Oftentimes we simply cannot do this until faced with no other choice. Or the only other choice being one that involves being consumed with hate, anger, and frustration. Strong is finding a way to move past these necessary stages of grieving and finding new peace someplace you would have not otherwise thought to look for it.

Sometimes you have to admit you are weak to find out you are strong. You must acknowledge that some things are just beyond your control and that that is okay. Then Strong shows up and carries you through.

Suffering

2012-02-25T10:26:00.002-08:00

I have two blog posts in me today. I'll start with the one that has consumed my thoughts this week. It is about suffering. The most intense, unavoidable suffering.

A friend is dying, losing her life to breast cancer. My relationship with her has been one on a social level amongst mutual friends and as volunteers at our kids' school. She is our acting PTA president and I was previously the co-chair of one of the committees, so I've had the pleasure to observe her natural, beautiful ability to bring people together and lead them toward a common goal. She exuded leadership, grace, energy, and an overt love for life even from afar.

This past year when her cancer returned, we had a couple of conversations about watching life pass us by while holed up at home with our respective illnesses and how much it sucked. She knew I had Meniere's disease because last year I felt I had to relinquish my PTA responsibilities due to the unpredictable nature and disabling symptoms of the disease I was experiencing at the time. And I knew her cancer had returned when I saw her at the community pool last summer. Admirably, she has had an honest and open policy about sharing her diagnosis and treatment with those of us around her in a very public, yet graceful, way. She seemed as concerned about how her friends and family were coping, as we all were about how she was doing in this most difficult time.

What really, really sucks is that she has an 8-year old son and a 7-year old daughter. Need I say more?

My last direct communication with my friend was an email she sent to me about three weeks ago. She asked me how I was doing (!) and said she reached out to me because she felt I could understand the frustration she was feeling with being confined to her bed due to the weakness, nausea, vomiting, and diarrhea she was experiencing from chemo (and, in hindsight, the progression of the cancer to her liver). She hated that life was going on all around her and she couldn't be a part of it. She didn't have to say it, but I'm sure she felt the worst about not being able to care for and be there for her children.

I always fear saying the wrong thing to someone in these sensitive situations. Having my own chronic illness has taught me a little more about the fine art of offering support without hopefully saying something stupid. In this case, though, I wasn't sure if I was successful... she was never able to reply to my email and therefore we didn't get a chance to discuss it. But what I told her in my email was that I did understand what she meant and that I, too, hated watching life go by as a bystander to all the action. I then shared my favorite mantra with her, with the caveat that "it works for Meniere's, but I don't know if it works for cancer." It is the Buddhist saying I've shared here before, "Suffering is the result of wanting things to be different than they are."

Less than a week later, she entered the hospital. After a last ditch effort at more chemo, the doctors delivered the bad news - there's nothing more that can be done. She is home now, surrounded by her family and close friends, being cared for and supported by hospice.

While I think the intent of the Buddha was to teach us to accept what is and our suffering will be relieved, I just cannot accept that a 43-year old mother with young children to raise, a husband to love, and friends and community who need her should die.

So this week, I have embraced suffering. Spat it back in defiance at the gods. It's not fair and none of us wants to accept that this is happening. I WANT this thing to be different than it IS. Everyone who knows and loves her wants with all their hearts and souls for this not to be.

Yet - it is.

Holding Steady

2012-02-19T19:49:00.000-08:00

Just a quick up-date to report that I've been feeling pretty well lately and things seem to be holding steady. This morning was the first time in several weeks where I felt the tingling sensation in my sinuses, or somewhere thereabouts, some buzzing in my ear, and the mild brain fog that precedes an attack. However, as the day went on, other than a couple of very mild minispins, I seem to have pulled through unscathed. This has happened a few times in the past few months - I've felt an attack was coming on, but my symptoms just went away after a few hours. That NEVER happened before. I had always hoped, wanted, that to happen, but my usual pro-drome of symptoms ALWAYS culminated within a day or two into a full-blown attack of vertigo or what later became just some serious dysequilibrium issues.

I am not sure what is happening here. I'd like to think the allergy shots are effecting the change. But if there's one thing I've learned about Meniere's disease is that it does what it wants, when it wants to do it and with no apparent rhyme or reason. So I will just go with the flow of change and not get too attached to the relative peace I've had recently.

My left (good) ear continues to ring more and more and I feel mild pressure from time to time. Sometimes I think my hearing in that ear is not 100% either. But I am not going to agonize over it. I am going to live each day to the fullest and not waste my energy worrying about it since that won't do anything but steal more good hours from my life. Gotta spend 'em wisely and to me that's time spent NOT thinking about Meniere's.

On that note, back to my regularly scheduled life.

From My Perspective

2012-02-11T22:21:00.001-08:00

Whatever you do, refuse to give this Stupid Disease any more of your precious time than it absolutely must take from you. Direct your anger right back at it and use that energy to beat down fear and anxiety. If it steals hours on end of time through debilitating vertigo and/or your hearing, look it right back in the face and, every minute you possibly can, get up and go about life to the very best of your ability.

Enlist the support of friends and family. Let them know you are scared and that if you have an attack while out of your house, you might need their help. Then go, do as much as you feel you can.

Do not fear the future. Live today. Be present in the moment, even when you are spinning. Learn to meditate, breath, and stay calm even when the world is spinning, swaying, and whipping you around like a bucking bronco.

And when things are at their worst, remember two things: this too shall pass and suffering is the result of wanting things to be different than they are.

Build on this attitude by researching, learning, finding a trusted doctor, and, based on all of this, have a realistic attitude. Don't ever give up, try new things, but also accept that you have a disease that has the potential to be one of the most disabling, non-life threatening conditions there is. Be kind to yourself and love yourself where you are. Things change, sometimes for the better, sometimes for the worse, but they always change.

Be grateful for all you do have: a warm bed to lie in, a bucket to barf in, clean water to drink when you need it, and nourishing food when you can finally keep it down. Think of those who suffer worse things in third world countries, people who have been abandoned, mothers whose children don't have enough food to eat or a roof over their heads. When my world is spinning, these thoughts help me to have perspective and realize things really could be worse.

All the rest will fall into place.

An Allergy Up-Date

2012-01-26T10:14:00.000-08:00

I have not been blogging regularly due to being too busy living life. That is great news and I'm not complaining by any means, but I do always have random ideas floating through my head that I wish I had time to put out into cyberspace. I like to be able to share my experiences if only to inspire someone else who is struggling to live with Meniere's disease.

Today, my day off, I have a litany of things I "should" be doing, but I really wanted to summarize my experience thus far with the allergy testing and treatment I have been undergoing at House Ear Clinic with Dr. Derebery. This is a long, wordy post. It is not meant to make up for lost time blogging. It is just that I don't have much time to spend on editing today and I'm not sure when I will have the time so I will just post as-is.

I chose to pursue this line of treatment because, despite all that I have tried, including IT and oral steroids, diuretics, IT gentamicin, oral and nasal allergy medications, and antiviral medication (which I still take), I continue to cycle through Meniere's attacks on a regular basis. The symptoms and pattern have morphed over the past three years and my most recent attacks seem to be occurring every 1-3 weeks and consist of 2-3 weeks of minispins throughout the day, general dysequilibrium, chronic low-grade nausea, fatigue, brain fog, and a buzzing sound and sensation in my right ear. The attack eventually abates and I am left virtually normal except for a soft whooshing sound in my ear and a little positional vertigo if I turn my head a certain way - all very tolerable. The time during the attacks, however, not so much. Though I get by.

I have blogged previously about the beginning of my allergy journey and I've mentioned that I had never considered myself an allergic person. However, since starting this line of inquiry, I've found that I definitely do have some problems. Most notably with dusting and vacuuming. For 24-48 hours after doing this kind of cleaning, I notice a significant uptick in my symptoms. The more dust I am exposed to, the worse it is.

So I wrapped up the second part of food allergy testing on Tuesday and was relieved, though not surprised, to find out that I did not test positive for any common food allergies. As I had previously tested positive for several inhaled allergies to things like cats, molds, and common local plants, Dr. Derebery recommended allergy shots. She explained that for some people, allergic reactions can manifest in our ears. She is adamant that she does not attribute allergies to the cause of Meniere's disease, but her studies have shown that attacks can be minimized by treating coexisting allergies. She goes on to say that oral allergy medications typically are not effective enough and do not cross into the inner ear where the reaction is taking place, hence the allergy shots are the only way, other than avoiding all allergens, to effectively treat the symptoms.

I started allergy shots about a month ago and I honestly cannot say up to this point if I've felt worse or better in relationship to the shots. Dr. Derebery said to expect it to take about three months before noticing a significant difference in my symptoms. In the meantime, I will continue to take weekly shots and this week I even learned to give myself my own shots. I was a little creeped out about the thought of doing so, I hate needles, but my 16-year old niece who has had type I diabetes since she was five inspired me. If she can give herself shots of insulin several times a day, I can give myself an allergy shot once a week. I was surprised to find it was painless! I had been getting the shots in my upper arm and that would be a little sore, but now I give them in my hip where I guess all that fat really helps to blunt the discomfort. Woo hoo!

In addition to the weekly shots, Dr. Derebery also recommended I follow a yeast-free diet. Apparently about 10 years ago, some doctor claimed that people with mold sensitivities (i.e. Moi) are more likely to have cross-reactivity with yeasts in the diet. At the time, Dr. Derebery said, this doctor's assertions were poo-pooed by most allergists, but now recent studies have given some credence to the theory so she has begun incorporating the recommendation into her own practice. While I was given written instructions of what foods to avoid, a quick Google search, if you're interested, will yield lists of foods to avoid including, but not limited to, bread (duh), all alcoholic beverages (boo), cheese and yogurt (wah), anything with vinegar (lots of those things), dried fruits, and most processed foods. I am going to have to really think about this one. Many, many of these foods are in my regular diet and I already have a hard enough time finding things to eat that are relatively low in sodium, which I try to stick to if only because it is good for you, and also does not contain beef, pork, cod, or pollack. The first two meats = yuck. Cod and pollack produce a terrible GI reaction in me and we'll just leave it at that.

One final diet recommendation Dr. Derebery apparently recommends to just about everyone is not to eat the same foods two days in a row. Apparently it is felt that by eating the same foods everyday, the immune system can become over-sensitized to the allergens (proteins) in the foods and eventually put allergy-prone people at higher risk for developing a food allergy. So she recommends a 4-day rotation of foods and provides a rotation diet cheat sheet to help with this. I have to say that at this point in time I have enough on my plate. This is enough to push me over the edge and since I am not struggling with any direct food allergies, I am going to respectfully decline to put much effort into this right now. Given that most people in the world eat the same foods every day for their whole lives and are the same populations that have the lowest rates of allergy in the world, I have to second guess this recommendation. If true, I am sure it's our first world habits and culture that have somehow set us up for immune dysfunction in this regard.

I think that about summarizes things for now. During the bad weeks, my mind spends a lot of time considering a laby. I had a hearing test this week and my speech discrimination in my right ear is down to 44%. And I think some of the words I got right might have just been good guesses. I really wasn't sure about anything I heard in that ear. At some point I'd like to discuss the laby option and consider having some testing done to pinpoint just how much vestibular function I have in my bad ear. If not for the fear of going bilateral, I would have no second thoughts about having a laby. But I have to remember that this bad ear is going to be of little help in the event of my good ear going south anyway. Something to still consider, but I need a little break from doctors and appointments for now. I am still grateful to gent and antivirals for controlling my symptoms just enough to give me more time to consider all of my options and still get by in life.

Riding the Waves of Uncertainty

2012-01-10T13:42:00.000-08:00

Yesterday my employer informed us that our company has been purchased by a multi-billion dollar corporation. This news wasn't entirely unexpected but I think most of us had hoped we would be picked up by another investment group who would allow us to continue along our current business model. Our manager admits he doesn't know what exactly this will mean for each individual, but there will be some duplication of positions that will need to be eliminated as the merger between "them" and "us" occurs over the next three to 12 months. My colleague and I are not optimistic about our lot for several reasons. However, we will heed the advice of management and keep our noses down and our attitudes positive.

I work for a relatively small home infusion pharmacy that has made some steady strides in growth over the past two years. I've enjoyed being part of a company it's size - not too big, not too small. I've had the opportunity to work on cases with employees at many different branches and across many disciplines. Many of the employees have been with company for a long time. I suspect the feel will not be the same under the new ownership.

On a positive note, if I am retained, the new company is said to have great benefits. Oh, wait. I don't qualify for those benefits as I am a per diem employee. In fact, if I am laid off, I don't think I will even qualify for the rumored severance package. Given my health and the fact that I have three young-ish kids at home, I have chosen to work part-time. The only problem these days with part-time work in the healthcare field is employers tend to consider part-time as working 32hours per week. Yup, four 8-hour days. Those of us wanting to work a little less, even though we hold a regular schedule, are relegated to per diem employment. The pros: I set my own hours and only have to commit to work a minimum number of hours per pay period. The cons: no health benefits, no retirement benefits, and probably no right to a severance package. It's been a fair trade, I suppose, given the circumstances of the past three years.

It's only been 24 hours since getting the news, but I've been sitting with my feelings and considering the possible scenarios. If I am retained by Big Brother, there is the possibility it will be with the caveat that I work more hours - or fewer. I really don't want to do either. I work about 20 hours a week now and that is perfect. I may be required to do more work out "in the field". I admit I have missed face-to-face patient and customer contact tremendously in this position but, given the unpredictable nature of my health from one day to the next, it has been a relief knowing I only have to show up to my quiet, nearby office on work days. My communication with others is limited to a few office staff and phone contact with patients. If I am required to spend more time in my car or in the field, I am not sure I can do that reliably. I know I cannot. Driving itself isn't always the problem, it's stopping. Or rather, on a bad-ish day, the sensation that I am still driving long after I am not. During those times I tend to walk around looking and feeling disoriented. Then there's the brain fog...

On the other hand, I could be let go. Unemployed. God, I love working! I fear staying home all day, every day. I've done this and I almost lost my mind. As much as I admit I am a homebody, I am not mentally equipped to maintain a healthy psyche without outside stimulation. Yet, as everyone in the Meniere's world will understand, the thought of looking for and starting a new job can be just enough stress to send one into a downward spiral - pun intended. I cannot imagine having the energy required to be "on" during training sessions and meeting and becoming acquainted with a whole new group of people. I just cycled through a bad week with lots of dizzies and exhaustion. I managed to get to work every day, but only because I can do my job with my eyes closed - sometimes literally.

This news has bummed me out in another way, too. Before Meniere's, I might have been excited about new prospects. I like a challenge and I enjoy the process of growing personally and professionally. But Meniere's now significantly limits my enthusiasm to do new things. I spend an awful lot of my energy fighting my negative emotions. I have to be mindful. I have to give myself a lot of positive self-talk just to maintain my status quo.

Ironically, I was recently invited to sit on the board of the local chapter of people-who-do-what-I-do. My first meeting is tomorrow night. I will take this as an opportunity to network and put my feelers out for anything I might be able to do should I find myself unemployed sometime in the near future. I will try to keep an open mind and a positive attitude. Best case scenario will be that I can stay in my current position with the same general hours and expectations. But only time will tell and I have to be prepared for anything.

Quote of the Day

2012-01-02T12:45:00.000-08:00

“Anger always comes fromfrustrated expectations.” -Elliott Larson

This was the subject of a post today at Tiny Buddha. It came along in a timely manner as I woke up with significant brain fog this morning. Today my head just doesn't feel at all attached to my body and just for kicks, I guess, Mr. M throws in a minispin here and there to needle me even more.

I started the day disappointed and a little frustrated. But as the hours went on and I muddled through some housework, I reminded myself that this will pass in a day or two and better days will come. I also reminded myself that I am vertical and, by all outward appearances anyway, am functioning.

So I lowered my expectations for the day and am now floating through the day in relative peace.

The Versatile Blogger Award

2012-01-01T22:26:00.000-08:00

I am humbled by my friend, a fellow blogger, Wendy who writes over at Picnic With Ants for nominating me for this award. I am even a little embarrassed as I have not posted anything here for, let's see, exactly two months! Bad blogger! Bad! No, really, this is good news as I have just been too busy to sit down and write. As someone with a chronic, and sometimes debilitating, disease, being too busy to do something is a very good sign.

So to honor Wendy's kind mention of my desire to lift up others who suffer from Meniere's disease, or any other chronic condition for that matter, through my blog, I have set aside some time to post 7 things you may not know about me and 5 deserving (IMHO) bloggers.

Seven Things You Probably Don't Know About Me:

1. I was born in Los Angeles, but grew up in Northern Idaho. As a young adult, I returned to Southern California and met my husband shortly thereafter. We have since lived in every county in So Cal from Santa Barbara on down to the Mexican Border, with a year each in San Jose and Monterey thrown in. I've lost track, but I think we have moved upwards of 20 times since meeting. And, no, we are not in the military.

2. I know a Nobel Prize winner. My husband worked with Kary Mullis, the man who developed the technique for DNA fingerprinting, at a small start-up bio tech company about 15 hears ago. I believe one of the first big cases in which this technique was used was the OJ Simpson trial. Very interesting guy! Kary, not OJ.

3. Even though I have lived within an hour's drive of either the Canadian or Mexican borders my entire life, I have never left the country.

4. Of my three children, the two youngest are twins. No, they don't run in my family, I didn't take fertility drugs, and they are not identical - one is a boy and the other is a girl. Yes, I have my hands full. No, I am not brave. And, yes, I feel like I won the lottery.

5. As a dietitian, I specialize in home nutrition support. In other words, I work with people who for one reason or another cannot swallow or digest food the normal way, so must be on home tube- or I.V. feedings. I love my job and about the only food advice I give to my patients is, when possible, to eat MORE fat and MORE calories. I am not someone you want to ask for weight loss advice!

6. I got my driver's license when I was 14-years old. That was the law in Idaho back in the day. A scary thought looking back on it.

7. I am half Norwegian, a quarter Italian, an eighth Irish, and an eighth Cherokee. I have very distinct physical and temperamental traits from each of these ethnic and racial backgrounds.

Five Deserving Bloggers:

I'm afraid I don't follow too many blogs. I've checked out a few other Meniere's-related blogs. Some, in my opinion, share unreliable and confusing information, but most just depress me and some downright frighten me. I love Wendy's blog, though, as she doesn't whine and complain, at least not nearly as much as she's entitled to. Rather, she is quick to find something positive in everything. Despite all that Wendy goes through, she remains sharp as a tack and the artwork she shares is inspiring. Anyway, here are a few blogs I like to read and why:

1. I enjoy reading Nicki's perspective at Fleetly Dreaming. Nicki and I have a lot in common, but she has muddled through Meniere's much longer than I and has managed to have children, work (until relatively recently), and take life one day at a time, living it with grace and fortitude.

2. For similar reasons, I like to read Faith, Hope, and a Fighting Spirit. Deb also has unilateral Meniere's and manages to teach, as well as coach gymnastics - of all things! I can't imagine being in a gym full of noise, watching people do flips and twirls. Sometimes when I think I should just throw in the towel and file for disability, I think of Deb and think I can handle my quiet office job a little longer. I especially appreciate her spirituality and the strength she seems to draw from it.

Now for some non-illness blogs I really enjoy reading:

3. Tiny Buddha. While I am a Christian, I find a lot of practical wisdom in Buddhism and relate very much to the notion of being mindful of the present. After all, that's all there ever really is. When I remember that, I find tremendous peace in my circumstances. One of my favorite sayings which happens to be from Buddhism is, "Suffering is the result of wanting things to be different than they are." In my mind, there are no truer words.

4. I have to be transparent here: Jennifer is a close, dear friend of mine. Her husband and mine have been the best of friends since high school. Jennifer is one of the most creative writers I know. Not that I know many. None really. But her writing style and subject matter never cease to entertain me. Jennifer has published a series of children's books, tweens really, about a London squirrel in 18th century Williamsburg. If you want to read something funny, witty, thought-provoking, and often off-the-wall, check Jen's blog out at Of Course, What Do I Know?

5. As someone who works in healthcare, as well as a person with a chronic, idiopathic, progressive condition, I find reading about healthcare from the perspective of the doctors very interesting. That's why I like to read KevinMD. The blogs are written by many different doctors and other healthcare providers and I find their honest, often fallible, admissions to be a reminder that they don't know all the answers. They are people with doubts, opinions, insights, and questions about medicine and human nature just like the rest of us. While I've seen many good points made here, I like that it reminds me that ultimately I am the one who is responsible for understanding my condition and how to treat it.

So, that's all for now. I am hoping to post a little more regularly here in the coming year, simply to share the little things that, when we are feeling well, we take for granted - but shouldn't. Though, realistically, there will probably be some bad days thrown in as that is what Meniere's disease likes to do to us: give us just enough freedom to regain some semblance of normalcy, then strip it away from us like a super-sticky Band-Aid being ripped mercilessly from a hairy piece of skin. Gotta love it.

Allergy Testing, Day 2 and a New Ray of Hope

2011-11-01T18:04:00.000-07:00

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!

2011-10-24T20:04:00.000-07:00

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

2011-10-18T15:47:00.000-07:00

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

2011-10-17T17:55:00.000-07:00

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?

2011-10-16T21:09:00.000-07:00

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

2011-10-15T09:14:00.000-07:00

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?

2011-10-11T19:28:00.000-07:00

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

2011-10-11T16:48:00.000-07:00

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

2011-10-06T21:18:00.000-07:00

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

2011-07-07T11:39:00.000-07:00

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

2011-07-05T18:35:00.000-07:00

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:

My current medications include furosemide 20 mg (plus Klor Con potassium) once a day. My SD doctor switched me from HCTZ to this a couple of months ago seemingly at a loss as to what to do about my complaints of ear pressure and nasal inflammation that were not improving on allergy meds. What do you think?

According to Dr. Wilkinson, furosemide (aka Lasix) can be ototoxic, especially in combination with oral or IV aminoglycosides (i.e. gentamicin). Since I am taking a low-dose of furosmide it's unlikely it's had any ototoxic effects, but he wants me to d/c it and go back on hydrochlorothiazide (HCTZ) however at 50 mg once a day. He said some people respond better to the higher 50 mg dose given at once rather than split between two 25 mg doses.

I had allergy testing done last month that showed no clinical signs of me being allergic to anything. I brought the report with me which detailed that both specific and nonspecific tests failed to identify any objective signs of allergy. Yet the allergist did observe that I have significant nasal inflammation and called it nonallergic rhinitis. He said I could continue taking Claritin, though he didn't think it would help anything, and also prescribed Veramyst which is yet another nasal steroid spray. I had some improvement initially, but most days I still wake up with facial pressure and nasal inflammation. (This can't be helping the pressure in my ears.) What are your thoughts?

Dr. W felt I needed further allergy testing as my symptoms, to him anyway, seem to be some kind of allergic response. I disagree since I don't have sneezing or any kind of dripping nose or watery eyes, just inflammation which to me feels like by body trying to fight something off. Yet I am not opposed to further testing, so he referred me to his colleague, Dr. Jennifer Derebery, House Ear Clinic's allergy and antiviral guru. I will be making that appointment soon, but have to iron out insurance details first. In the meantime, Dr. W prescribed a 6-day Medrol pack. I have been resistant to oral steroids up to now, but I am at a loss and desperate to get some relief. I asked about other allergy meds, such as Singulair, instead of taking steroids, but he wanted me to see Dr. D first.

I am on week three of famiciclovir 250 mg twice a day. I have noticed more gurgling in my ears, a good thing I think, and my good days I seem to feel better than usual but I still cycle through my usual set of symptoms which are fluctuating tinnitus, ear pressure, and balance problems. I think it is too soon to tell if they are helping or not.

Dr. W says he usually only prescribes antivirals for one month, but admits Dr. D will sometimes give a 3-month prescription. I told him I felt strongly that I should try them for 3 months to be sure I gave them the best possible chance of working if they were in fact going to work. Since I will be seeing Dr. D within the next couple of months, he was agreeable to that plan. In addition, he ordered the following blood tests: CBC w/ dff, Sed Rate, quantitative serum immunoglobulins, ANA, rheumatoid factor, FTA, and urinalaysis. I asked about other viral load tests, but he didn't feel they would be helpful at this time and didn't "see the point." But, he said, if any of the above come back out of range, then further tests might be indicated.

After digesting all of the information, along with my lunch and the Pinkberry, I have decided to do the following:

1. Discontinue the furosemide and go back to taking HCTZ, just 25 mg once a day for now. I am afraid that taking 50 mg at once will make by blood pressure too low and leave me lightheaded and dizzy. Clearly no one with MM needs that. I will increase it, however, if my ear pressure becomes worse in the future.

2. Start the Medrol pack tomorrow. I am eager to see if the facial pressure and cycle of symptoms can be improved with steroids.

3. Make an appointment with Dr. Dereberey, most likely at the end of August after the kids have gone back to school. I don't want to pay a sitter to watch them all day since we have to see her in Los Angeles, a minimum two-hour drive each way, and I certainly don't want to bring them up there with us.

4. Follow up with Dr. Wilkinson after seeing Dr. D.

I still hold on to hope that the antivirals will produce some kind of significant improvement and believe I need to give them more time. I will continue to take them for the full 3 months for which they were prescribed. I may well make an appointment with my GP along the way, too, and have all the usual blood tests to be sure my body is tolerating all the drugs I am taking and just get her caught up to speed with what is going on in my MM world.

I feel pretty good about my appointment, but as always I wish I could take these guys out to dinner, get them drunk, and pluck their brains for more details about what they know about MM. I also asked Dr. W what, if anything, new or exciting he was aware of that was happening in the field of MM study, but he said there was really nothing new he knew of except some stuff going on at Hopkins with IT dex. We both agreed that was probably not the answer, but he did seem genuinely willing to share anything new as it came along.

All in all, it was quite a productive day.

Quote of the Day

2011-06-21T20:46:00.001-07:00

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

2011-06-20T22:18:00.000-07:00

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

Gotta Love Steven Wright

2011-06-18T17:40:00.001-07:00

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

Steven Wright

Back on Diuretics and Continuing Antivirals

2011-06-18T07:28:00.000-07:00

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)

2011-06-14T20:46:00.000-07:00

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)

2011-06-14T14:04:00.000-07:00

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?

2011-06-09T16:13:00.000-07:00

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...

2011-06-07T18:59:00.000-07:00

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

Benjamin Franklin

Summer's About to Begin

2011-06-07T14:05:00.000-07:00

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

2011-06-06T16:46:00.000-07:00

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

2011-06-04T07:27:00.000-07:00

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!

2011-06-02T17:59:00.000-07:00

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

2011-06-01T21:43:00.000-07:00

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

2011-05-31T20:34:00.000-07:00

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...

2011-05-31T20:00:00.000-07:00

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

2011-05-29T17:14:00.000-07:00

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

2011-05-27T20:00:00.001-07:00

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

2011-05-23T21:18:00.000-07:00

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

2011-05-22T21:43:00.001-07:00

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

2011-05-13T20:36:00.000-07:00

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

2011-05-08T18:15:00.000-07:00

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

2011-04-30T16:20:00.000-07:00

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?

2011-04-28T09:46:00.000-07:00

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...

2011-04-20T15:04:00.000-07:00

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!

2011-04-14T21:41:00.000-07:00

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?

2011-04-14T16:53:00.000-07:00

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

2011-04-12T21:57:00.000-07:00

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!

2011-04-01T21:14:00.000-07:00

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?

2011-03-25T09:39:00.000-07:00

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.
The use of dietary supplements is widespread—they are taken by half of American adults. But the use of supplements is not limited to adults. A study published in the November 2001 Journal of the American Dietetic Association showed that dietary supplement use is prevalent among students as well, with 17.6 percent of 1,532 eighth-graders reporting the use of a vitamin-mineral supplement. Herbs, one type of dietary supplement, are widely used throughout the world. In China, traditional medicine encompasses a holistic approach to healing, and herbal remedies are routinely included in self-care. The World Health Organization (WHO) estimates that in developing countries up to 80 percent of indigenous populations rely on herbs for primary health care needs. In France and Germany, 30 to 40 percent of all medical doctors rely on herbal preparations as their primary medicines.

Regulation of Dietary Supplements

In 1994 the U.S. Congress passed the Dietary Supplement Health and Education Act (DSHEA), which President Bill Clinton signed into law the same year. One provision of DSHEA clarified the definition for dietary supplements outlined above. DSHEA also mandated the establishment of the Office of Dietary Supplements (ODS) within the National Institutes of Health. The ODS coordinates research on dietary supplements and acts as a clearinghouse for regulatory issues. It also maintains an excellent resource for consumers, the International Bibliographic Information on Dietary Supplements (IBIDS), which is a database that contains citations published in scientific journals on the topic of dietary supplements. The public can access IBIDS on the ODS website.

DSHEA established a new regulatory framework for supplement safety and for the labeling of dietary supplements by the U.S. Food and Drug Administration (FDA). Dietary supplements are regulated under food law, but with certain provisions that apply only to dietary supplements. For example, dietary supplements escape the stringent approval process that food additives and drugs must go through before being marketed to the public, unless the manufacturer of a dietary supplement makes a claim for therapeutic efficacy .

DSHEA also gave manufacturers the freedom to provide information about product benefits on labels through three types of claims. Health claims describe a relationship between a food substance and a disease or health-related condition. For example, the health claim "diets high in calcium may reduce the risk of osteoporosis " has been authorized by the FDA and may appear on the labels of dietary supplements. Structure function claims may state a benefit related to a nutrient-deficiency disease (such as scurvy , which is caused by a deficiency of vitamin C), as long as the statement tells how widespread the disease is. These claims may also describe the role of a nutrient intended to affect a structure or function—for example, " antioxidants maintain cell integrity," or "calcium builds strong bones." Nutrient content claims describe the level of a nutrient or dietary substance in a product, using FDA-regulated terms such as "good source," "high," or "free." For example, if a label claims a dietary supplement is fat-free, the supplement must contain less than 0.5 grams of fat per serving.

Baby Boomers and Nutritional Supplements

Informed, prosperous, and health-conscious, the baby boomers are known as a generation that plans to fight vigorously against the encroachments of age. During the 1990s, as the boomers began reaching their fifties, they increasingly turned to supplements to ward off osteoporosis, memory loss, and a host of other ailments. With increased demand, the vitamins, minerals, and herbs they sought migrated from health food stores to mass merchandisers. Between 1997 and 2002 the supplement industry experienced a 34 percent jump in sales, to more than $19 billion annually.
—Paula Kepos

However, information on supplement labels cannot be false or misleading. For example, statements that a product will treat, cure, or diagnose a disease are reserved for drugs. That is why the label of the popular herbal extract echinacea may boast that the herb "supports good immune function" but will not claim to "cure your cold."

Because they are not regulated as strictly as drugs, dietary supplements can cause unpredictable side effects. For example, studies have shown an increased risk of prostate cancer among men who take beta-carotene supplements and drink alcohol, and an increased risk of lung cancer among people who take beta-carotene supplements and smoke.

In Germany, herbs and herbal products are regulated in a different way than in the United States. In 1978, the German Federal Health Agency established the German Commission E to investigate the safety and efficacy of herbal remedies commonly used in Germany. The commission weighed evidence from the literature, from anecdotal reports, and from clinical studies. They subsequently developed monographs on over 400 herbs. These monographs are now used worldwide as essential references on herbal therapy. The commission also established indications (how an herb is used medicinally) and dosage recommendations, resulting in the successful mainstreaming of herbs into medical practice. German physicians frequently prescribe the herbs ginkgo biloba, hawthorn, St. John's wort, horse chestnut, and saw palmetto. Unlike U.S. law, German law allows herb manufacturers to market herbs with drug claims if the herb is proven safe and effective.

Controversies Surrounding the Use of Dietary Supplements

Opponents of DSHEA claim that the issue of public safety is their primary concern. Steven H. Zeisel, of the University of North Carolina School of Public Health and School of Medicine, writes that "DSHEA modifies the regulatory environment so that it becomes possible, even likely, that products will be marketed that inadvertently harm people" (Zeisel, p. 1855). Zeisel believes that the DSHEA legislation makes it easy for small enterprises to market products without investing the time and money needed to prove their product's safety and efficacy. He contrasts the development of a new dietary supplement to that of a new drug or food additive, for which there is a formal process to evaluate safety.

A manufacturer developing a new drug or food additive must conduct safety studies following FDA procedures. Results must be submitted to the FDA for review and approval before the ingredient or drug can be sold to the public. This is not the case for dietary supplements, however, because under DSHEA they are legally in a class by themselves. The FDA must simply be notified of the new product, and the notification must provide information that supports the manufacturer's claim that its product is safe. Once the product is marketed, the FDA is responsible for proving that a dietary supplement is unsafe before it can take action to restrict that product's use or remove it from the marketplace.

Another issue critics of DSHEA cite is the scant quality control of dietary supplements. Quality control is important to assure consumers that a product contains the ingredients stated on the label in the stated amounts. Neither the FDA nor any other federal or state agency routinely tests dietary supplements for quality prior to sale. But some manufacturers of dietary supplements do adhere to Good Manufacturing Practices (GMPs) and make every effort to produce a quality product. Also, the FDA has assisted the industry by proposing GMPs that focus on ensuring the identity, purity, quality, strength, and composition of dietary supplements.

DSHEA supporters fear that increased regulation of dietary supplements will decrease access to beneficial products. National opinion surveys show that many supplement users feel so strongly about the potential health benefits of supplements that they would continue to use them even if the supplements were shown to be ineffective in clinical studies. Consumers value freedom of choice, and many view regulation as an attempt by the government and medical establishment to monopolize treatment options. Clearly, a balance needs to be reached between preserving freedom of choice and ensuring that dietary supplements are safe and effective.

Jackie Shank

Bibliography

Blendon, R. J.; DesRoches, C. M.; Benson, J. M.; Brodie, M.; and Altman, D. E. (2001). "American's Views on the Use and Regulation of Dietary Supplements." Archives of Internal Medicine 161(6):805–10.
Dwyer, Johanna T.; Garceau, Anne O.; Evans, Marguerite; Li, Donglin; Lytle, Leslie; Hoelscher, Deanna; Nicklas, Theresa A.; and Zive, Michelle (2001). "Do Adolescent Vitamin-Mineral Supplement Users Have Better Nutrient Intakes than Nonusers? Observations from the CATCH Tracking Study." Journal of the American Dietetic Association 101(11):1340–1346.
Fleming, Thomas, ed. (1998). PDR for Herbal Medicines. Montvale, NJ: Medical Economics.
Sarubin, Allison (2000). The Health Professional's Guide to Popular Dietary Supplements. Chicago: American Dietetic Association.
Skidmore-Roth, Linda (2001). Mosby's Handbook of Herbs & Natural Supplements. St. Louis, MO: Mosby.
Somer, Elizabeth (1996). The Essential Guide to Vitamins and Minerals , 2nd edition. New York: HarperPerennial.
Zeisel, Steven H. (1999). "Regulation of Nutraceuticals." Science 285:1853–55.

Internet Resources

National Institutes of Health, Office of Dietary Supplements. <http://ods.od.nih.gov>
U.S. Food and Drug Administration Center for Food Safety and Applied Nutrition (2001). "Overview of Dietary Supplements." Available from <http://www.cfsan.fda.gov/~dms>

Round Two - Stomach Flu

2011-03-24T18:05:00.000-07:00

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)

2011-03-23T20:54:00.000-07:00

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.

The bad news is that I am noticing more frequently a high-pitched ringing in my left, or good, ear which does seem to last less than an hour, at least. At times, it will also feel like there is an air bubble and slight pressure behind my ear drum causing not only sounds from the outside to have a distinct echo to them, but my own voice will also reverberate in my head (autophony). I do not experience autophony in my bad ear, so this is new to me. This is only occuring a couple of days a week first thing in the morning after I get out of bed, it peaks by midmorning, then subsides by lunchtime.

This is typical of what I felt, I believe in both ears, off and on for a couple of years before the vertigo and worsening symptoms developed in my right ear. At that point, I was so distracted by my right ear that if this stuff was still going on in my left ear, I was not aware of it. Now that the right ear has calmed down somewhat, I am noticing my left ear more. And the problem seems to flare with changes in the weather which has been a lot lately. In fact, another storm rolled in today and the rain is coming down as I write this.

So what does this mean? WHO KNOWS! As usual, it requires a wait-and-see approach. For there to be a Meniere's diagnosis there still needs to be hearing loss and vertigo, so I can't say I am going bilateral with any degree of certainty. And there are lots of things that can cause these symptoms that are not Meniere's. But why would I have two different problems? Where did I get these messed up ears?!

Oh, this is so frustrating. Breathe...

101 (not really) Things I Have Tried

2011-03-23T20:25:00.000-07:00

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.

The first alternative to my doctor’s first line of defense (diuretics and diet) was to try antivirals. There are a few published studies on relatively large populations of MM sufferers that suggest a strong correlation between the herpes class of viruses and MM and a significant improvement in symptoms with antivirals. My doctor was familiar with these studies, however he is not convinced of a link just yet. Regardless, antivirals being a relatively safe class of drugs, he was agreeable to prescribe a short course of Acyclovir. I started off following the American (Gacek, et al) study’s protocol of 800 mg 4 times a day for 3 weeks. By the end of the first week, my symptoms seemed to greatly improve. But the vertigo returned with a vengeance once I began tapering to 3 times a day. At that point, I asked to increase to 5 times a day consistent with the common dosage given for other herpes infections. Again I improved over the course of the next 2 weeks. But my prescription ran out and my doctor was not comfortable allowing me to continue on the high doses indefinitely. Honestly, I didn’t want to be dependent on taking pills for who knows how long and continue to live in fear every time I tried to taper to a maintenance dose. I just wanted this nightmare to end.

The next alternative treatment was a supplement regimen promoted by a guy on-line who calls himself John of Ohio. Apparently a retired biology teacher, he did some of his own research and claims to have gained control of his own MM symptoms by taking a plethora of dietary supplements. His logic was, well, logical, so it seemed to be worth a try. It turned out not to be for me. First of all, I was popping pills all day. A couple had to be taken on an empty stomach, a couple more with food. Some were familiar vitamin supplements and others were obscure to the point that they could only be found from a small handful of on-line suppliers. Nonetheless, I stuck with it for a couple of months. Some followers claimed relief almost immediately, yet others didn’t notice results for months. It all sounded really good in theory; however, I have my reservations about the supplement industry, as well as the purity and long-term safety of their products. Time and again, private testing companies have proven that many supplements are contaminated with potentially dangerous ingredients and/or contain significantly more or less of the active ingredient than what is stated on the label. Then there are the studies that found that beta carotene supplementation, for example, promotes lung cancer cell growth and folate supplementation is linked to an increased incidence of colon cancer. Finally, if one is taking a bioactive agent in high enough doses to have a therapeutic effect on the inner ear where blood supply is low, imagine the potential effects, good or bad, on the tissues in the rest of the body. The way I saw it at this point was that it was only my ear that had a problem, so why not localize my treatment approach?

But, at the encouragement of my husband after having had read some pretty convincing testimonials on-line, I had to exhaust one more alternative treatment: upper cervical chiropractic adjustments, aka NUCCA. The theory here goes that the nerves between your cervical vertebrae can become compressed and this can contribute to everything from MM to MS. Again, logically, it could be possible, especially since this is the segment of the spinal cord innervating one’s ears and eyes, among other things. Of course there were only two NUCCA chiros in my area and neither was covered by my insurance even though I have chiropractic coverage. So out came a boatload of money for a 3-month course of adjustments and, somewhat worrisome, x-rays. Yes, my posture improved a bit, I think, and it was completely painless to the point that it was hard to really believe this guy was doing anything at all except laying of hands on my neck. A nice enough (young) guy, but as I got to know him over the weeks I found him to be quite naïve and really just not very smart. I would say it was a relatively harmless thing to have tried except for the exposure to all the unnecessary radiation and the huge hit to our credit card. And I continued to have vertigo as bad as ever.

By this time, I was 7 months into this nightmare and I just wanted to wake up! Back to the doctor I went and it was decided the next best course to try was intratympanic dexamethasone injections. I got one in October with some improvement and another in November. I made it through December and January vertigo-free and finally feeling like a normal person again. Then the week before my son’s 9^th birthday, wham! The nightmare returned. I went in for another series of dex injections, as well as a trial of another diuretic (hydrochlorothiazide to Neptazane and back to HCTZ). The dex failed miserably and I developed an allergic reaction to the new diuretic. At this point, my doctor suggested adding high doses of oral steroids to another intratympanic dex shot. Having worked with patients on oral steroids, I was all too familiar with the nasty side effects of these potentially dangerous drugs. Plus, I was devastated to have experienced such a wonderful period of remission followed by complete failure and misery. I was done. I wanted off this rollercoaster. I wanted to move on to something that had the hope of offering permanent, or at least long-term, relief.

I had been reading about intratympanic gentamicin treatments for months by now and this treatment strategy seemed to offer the best of both worlds: it was noninvasive and potentially permanent. I had no fear. My life was severely limited by now and I had nothing to lose. So on March 25^th, 2010, I had my first gentamicin injection. It was a nonevent, painless as the dex had been. I went home and waited. I had a couple more vertigo attacks, but about 10 days later I began feeling the telltale signs that something was happening. My balance was very poor and I felt really weird, but the vertigo and nausea were gone! I would say it took about 3 months to regain a pretty decent sense of balance and another month or two for my hearing to improve a bit to a new baseline. I still felt the episodic pressure in my ear, as well as fluctuating tinnitus just as I had before with my vertigo attacks, but I could function and life went on. I continued to work, run the kids around town, and no longer lived in fear.

My doctor was surprised I had responded after just one gent shot. He gives a lot of them and said the average number of shots patients needed before they got relief was 2.something. I had read, and he concurred, that the vertigo could return, usually within the first year. And sure enough, it did. I got 8 beautiful months of relief and then my world turned upside down once again in November, 2010. While it was disappointing, I was not defeated. I knew what worked and went back to the doctor for another shot two days later. Then I waited and waited and waited. Six weeks later, I was again confined to my house and suffering long episodes of vertigo several times weekly. This had to be one of my lowest points. The what-ifs reared their ugly heads and I had to seriously consider surgery. I got a second opinion at the House Ear Clinic, even though my own doctor is a world-renowned specialist in treating MM. They had nothing particularly new or better to offer me.

At my follow-up appointment with my regular neurotologist on December 30^th, I was prepared to sign on the dotted line to have surgery: either endolymphatic shunt surgery or the more invasive, but more promising, vestibular nerve section (VNS). But my doctor was agreeable to try one more gent shot, even though my hearing had diminished quite a bit over time. The risk of too much gent being deafness. But this, to me, was preferable to the possibility of a failed sac surgery or to anyone poking around behind the protective barrier of my skull.

This time I waited 3 long weeks and then, success! I have been vertigo-free since the 3^rd week of January. I still feel off-balance and have lots of little mini-spins lasting a second or two several, several times a day. I still want to complain many days, but I can’t. I am vertigo-free! Hallelujah!

I don’t know what the future holds, but I am just grateful for today.

Two Steps Forward, One Step Back

2011-03-10T20:12:00.000-08:00

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.

My hearing is now no doubt worse in my right ear. I have been getting back to walking regularly and listening to music using earbuds. This morning I took the earbud out of my left (good) ear and could hear almost nothing in my right ear. I moved the earbud to my left ear and could hear clear as day. I remember my hearing being worse after my first gent shot too, but that it improved a bit 4 or 5 months later. Of course, that may not happen this time around since I have had the subsequent shots. Trying to understand what anyone is saying if there is any noise in the background requires extreme effort and some lip-reading. Exhausting...

And then there is the symptom many of us with Meniere's complain about: the Technical Term, I think, being brain-fog. I have had episodes of this since Day One of Meniere's, usually around the time of an attack. So I don't think this is a result of the gent. But when I feel this way, my short-term memory is virtually nonexistent. I spend most of my time on those days wondering what the H.E. double hockeysticks I was just doing. I bounce around from one thing to the next like a pinball. Sometimes I bounce back to, and finish, the tasks I started, sometimes I am sure I don't.

So I keep reminding myself of the one thing I begged for during all those times my world was spinning round and round: anything, ANYTHING would be better than vertigo. I swore I would live my life to the fullest if the vertigo would just stop. So I am keeping that promise, soldiering on, and trying my best not to complain. Ok, except maybe here.

Still hangin'

2011-03-08T06:47:00.000-08:00

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.

Damn, Jimmie!

2011-02-26T20:08:00.000-08:00

One of my all-time favorite movies is Pulp Fiction. There is a scene in the movie where Jimmie (Quentin Tarnatino) serves up an apparently damn good cup of coffee to Jules (Samuel L. Jackson). Jules replies, "Mmmm! Goddamn, Jimmie! This is some serious gourmet shit! Usually, me and Vince would be happy with some freeze-dried Taster's Choice right, but he springs this serious GOURMET shit on us! What flavor is this?" Since then, anytime I cook something particularly yummy, Phil and I will say to each other, "Damn, Jimmie!" a la Samuel L.

Tonight was one of those nights. I saw this recipe on The Nate Berkus Show that I can't seem to find in print on his website at the moment. Anyhoo, it was for a spaghetti sauce with shredded carrots in it. I cooked up a pan and tossed it with whole wheat spaghetti. To go with it I caramelized some fresh salmon filets that I marinated in balsamic vinegar first and sauteed thinly sliced yellow summer squash in a little olive oil and butter.

It was so good, my mouth is still watering, even though I am stuffed to the gills. As per their usual m.o., the kids picked and complained. They don't like squash (this really was good!) and were freaked out by the shredded carrots in their spaghetti sauce. Maybe next time I will use my handy-dandy immersion blender to puree the sauce. Though I thought the carrots added a wonderful texture and mouth feel, personally.

While on the subject of cooking and recipes, another one of my all-time favorite things is the Living Cookbook. It is an AWESOME tool to organize and analyze recipes. It also has a calendar and menu planning tool, as well as a shopping list generator and lots more. I love, love, love it! A big bonus for anyone watching their sodium is that a recipe or menu can be entered and analyzed for, among other things, sodium per serving. For example, one serving from the above menu (salmon, spaghetti, and squash) has only 81 mg of sodium. Good stuff...

Rainy Day Fun

2011-02-26T09:28:00.000-08:00

A big winter storm rolled into So Cal overnight. The rain is coming down in sheets and I have been looking forward to a day with nothing to do. I am not even going to clean the house, which requires a lot of effort on my part! Phil is spending the morning up at his dad's house, helping out with a project there. So it's just me and the kids. We are plotting to play games by the fireplace, eat some yummy treats, and just have fun together. As always, the hard part for me is the noise. The noise, noise, noise, noise! Yes, I often feel like the Grinch, constantly shushing the kids. But today, I am going to try my hardest to not let it bother me and just enjoy the day.

Along the lines of noise, besides my ultra-sensitivity to it (and inability to distinguish what others are saying when there is background noise or other people talking at the same time), our house has a lot of echo. The living room has vaulted ceilings and the whole house has laminate flooring. Despite living here for almost two years, we have very little on the walls and just blinds on our old, single-pane windows. So I went on J.C. Penney's website this morning and found some nice, insulated curtains. Hoping to get over there later this afternoon or tomorrow to check them out. We had a guy come over last weekend to give us an estimate on new double-pane, energy-efficient windows. We're looking at a ballpark of $10,000 to $15,000 - just not in the budget right now. That's not even the construction involved in cutting down the size of some the walls o' windows we have that I would like to trade in for more solid wall space. So, I am thinking even a $1000 investment in good, insulated curtains will go a long way in cutting our energy bill AND the echo in the house. But I think I can get away with spending maybe even half that number and be happy with the results.

Wish me luck in Monopoly!

This is not the worst thing...

2011-02-25T22:15:00.000-08:00

It has been a rough week.

One of our teenage nieces has been battling migraines and terrible fatigue for months, possibly due to her body attacking her thyroid. It is not enough that she has had type 1 diabetes since she was 5 years old. Another niece, the mother of a son about to celebrate his 1st birthday, fell and knocked out several teeth and broke the bones covering both sinus cavities. She is facing months of painful surgeries, but lucky to be alive as the doctor said she could have suffered a brain stem injury.

I lost 5 patients to death this week. A grandmother raising her grandchildren succumbed to malnutrition and small bowel failure as a result of gastric bypass surgery. An elderly man whose daughter cared for him, shuttling his frail shell to and from radiation and chemotherapies, changing his diapers, and watching helplessly as the cancer ate away at his body despite our best efforts to feed him. The husband of a woman who once told me she didn't mind caring for him as Parkinson's Disease robbed him of his dignity because he had provided so well for her for so many years. A man who diligently spent 3 days of every week having his blood dialyzed after both of his kidneys failed him. And , finally, a 32-year old woman, childlike in stature thanks to years of suffering the cruelties of muscular dystrophy. Her death, especially, I didn't see coming, even though the past few weeks she had all the ominous signs. Hindsight is 20/20.

I ended the day counseling a mother who spoke with an up-lifting, lilting voice, her husband, and their 16-year old son - one of their 3 children bravely manuevering through barely-normal lives as they cope with cystic fibrosis. All 3 children! A potentially-fatal disease...

Meniere's, while life-altering in so many ways, is not this. There is hope. Things change. If there is one truth in life, it is that nothing stays the same. With this disease, some times are better, some are worse. But it is always changing. And as long as we otherwise have our health, there is still hope.

Mini-Spins

2011-02-19T11:01:00.000-08:00

For the past two weeks or so, I have been having mini-spins. I notice them if I turn my head quickly, especially to the right (my bad ear). The other time they hit is when I look down then back up. This is especially annoying at work since I look down at my desk and then back up at my computer screen all day. They are tolerable and only momentarily disorienting. I think the past few days have been a little better, though.

On the plus side, my balance is a little better than it has been. And another big plus is the fact that the usual cycle of pressure build-up in my right ear is all but gone. I have noticed that despite the big rainstorm that has rolled in to So Cal, my ear is not plugged at all. Before the last gent, my ear would get so plugged before and during any bad weather. It would be so bad that my left (good) ear would even feel plugged a bit. I could never tell if it was my imagination or if my left ear was giving me problems, too. Now that my bad ear is behaving better, I don't notice anything in my left ear excect occaisonal, high-pitched ringing. I do think that when my bad ear is acting up, it somehow affects by good ear, too.

So, the only problems I am having now are the mini-spins and medium-loud, constant tinnitus in my bad ear. All in all, I am functioning well. Still grateful that the vertigo is gone for now.

Therapy Pets?

2011-02-14T18:27:00.000-08:00

Just kidding!

These are the newest members of our family, Maisy and Daisy. We can only tell them apart so far by their personalities. But they are so sweet and we are all enjoying having them around.

Cigna Came Through

2011-02-12T08:10:00.000-08:00

I have been battling with Cigna for almost a year, trying to get them to pay for one of the dexamethasone injections I had back in November of '09. I had four of these injections in a four-month period of time and they paid for all but one. The only explanation they could ever give me for denying payment was they wanted to know if I had any other medical insurance. When I told them no, I do not, and offered to provide them a letter from my employer as proof, I was told that would not be necessary and the claim would be paid. But it was not!

We are talking about $1600, so I did not, could not, let it go. As I continued to call Cigna, trying to get to the bottom of this, it lagged on. Eventually I was told the only way I could get resolution was to file an appeal because it had been more than 365 days since the service date. Really?! I call repeatedly for nine months offering any information necessary to get the claim paid and now I have to file an appeal because they can't communicate with each other?

I jumped through the hoops, spent a weekend compiling my notes, writing a summary of the events, and mailed the appeal certified mail. Then I waited again.

Three weeks later, I got an impersonal statement simply stating the claim has now been paid as if nothing happened. Of course, I am relieved. But an brief note of apology would have been nice. Nearly a year of worrying what we would do if we had to come up with $1600, monthly phone calls to Cigna restating the story, and the inconvenience of going through the appeal process and not a single acknowledgement of their incompentence in handling the claim.

Well, nonetheless, I am relieved and, of course, grateful for my health insurance and for all Cigna has paid through this ordeal.

Blown Speaker

2011-02-11T07:12:00.000-08:00

Last night a good analogy came to me to describe how I now hear. It is like listening to everything through a pair of speakers where one speaker is working normally (my left ear) and the other speaker is blown and produces a constant hissing, buzzing sound with little to no other useful information coming from it (my right ear). Just like listening to this pair of speakers, I have to filter everything I hear through this annoying hissing.

I am used to it and most of the time barely notice. But it is really frustrating to carry on a conversation in a room where several other people are talking or if there's music in the background.

All that being said, still no more vertigo. So I am happy, happy, happy about that! Life goes on...

Feeling Better and Better

2011-02-03T21:53:00.000-08:00

Just a quick up-date to document for myself, and anyone else who gives a rat's-you-know-what about my ear, how I am doing.

It is now 35 days since my last gent shot and 15 days since my last episode of vertigo. I am now confident that the gent has done its job once again and I am doing the happy dance!

Based on my previous "successful" gent experience, I know moving forward that I may still experience some woozies from time to time, but I am hopeful this period of relief will be better and longer. Though as those with MM know, there are no guarantees.

As of the last day or two, the ringing is winding down to a quiet(er) high-pitched hum, the pressure in my ear is all but gone except for a sensation of fluid sloshing around in there when I shake my head, and my hearing is also a bit better. Nothing is staying the same and nothing is getting worse. These are all symptoms that contiued to come and go during my last vertigo-free period, so I will expect more of the same this time. But, assuming more of those little vestibular hair cells were destroyed by the 3rd shot, it's hard to know what to expect.

So I will simply celebrate every day of freedom from spinning... the rest is nothing more than a nuisance.

Frankenstein

2011-02-02T05:27:00.000-08:00

The last intratympanic gentamicin injection seems to be doing its job. No more vertigo! But part of the recovery process includes compensating for the loss of balance cells in the affected ear. I am able to function pretty well in well-lit areas, though walking on the curbside of a sidewalk can be tricky. However, walking in the dark is a whole other animal. It turns out that, beside the ears, your eyes and body mechanics are the other components of balance (I mean, really - who thinks of this stuff unless it is forced upon you?). Without a focal point to focus my eyes on, I sway like a drunken sailor in the dark. To make matters worse, I have plantar faciaitis in my left foot which causes sharp heel pain, especially after a period of rest.

So night before last I get up to use the bathroom in the middle of the night and as I am bouncing from side to side and limping down the hallway with my arms out in front of me to keep from running into the walls, I realize I must look like Frankenstein's monster after being shot in the foot. The image of myself as the green-faced goon with the aby-normal brain, or in this case ear and foot, made me LOL! at 3 a.m. And for the rest of the day, as well.

The Humor of Falling Apart

2011-01-29T23:48:00.000-08:00

Today Phil was working on his computer in the garage and I had stepped out there to do some laundry. I heard him mumble something to me, so I gave my standard reply, "I can't hear you!"

Instead of repeating himself, he broke out in a belly laugh. Finally he told me he had said that he can't read a thing on his computer anymore and found it quite humorous that I could not hear him tell me he can't see.

We make such a great couple!

My Ear is Pissed

2011-01-29T23:41:00.000-08:00

I am now 10 (!) days without vertigo. New record since November 16th.

I wish I could say I have been feeling great these past ten day, but my ear is angry and not going down without a fight. I am not complaining, mind you. I have not missed a day of work or of life, and I am utterly grateful for the fact that I am vertical everyday, but all of my other symptoms have been raging.

My head is in a constant fog. I have had varying degrees of pressure deep in my ear which only today seems to be letting up. And the ringing: a loud, constant buzzing which interferes with any good hearing I have in my good ear. This week has been the mother of all attacks minus the vertigo. And I am FUNCTIONING through it all. So take that, bastard!

I have been through this before and it did get better. And, honestly, if it doesn't this time, that is okay, too. But I will continue to beat the vertigo into submission every time it even thinks of rearing its ugly head. It will not win. Though we may both look like a haggard and bloodied Rocky Balboa in the end.

Doctor's Appointment: Post-Gentamicin, Round II

2011-01-28T07:41:00.000-08:00

Yesterday was my 4-week follow-up appointment since my last gent injection. As I last posted, my ear was acting up the day before and it continued to buzz, feel full, and, as my hearing test showed, be pretty much deaf throughout the day yesterday. But still no vertigo.

We all agreed, Dr. Harris, his protege, Phil, and I, that it was a good idea to give the last gent shot a little more time to decide if it is working -or not. At the very least, the frequency of my vertigo over the last month has been cut in half from 2-3 attacks per week to one per week. As of today it has been 9 days since the last spin. Also, my balance is a little more tweaked than usual, another good sign.

But as I was complaining to Dr. Harris that the pressure I was feeling in my ear was driving me nuts, he said, "Let's put a tube in your ear." He explained that even though the fluid build-up that occurs in Meniere's is in the inner ear behind the round window membrane, that, for some people, venting the middle ear by placing a grommet in the ear drum provides relief from both the pressure and the vertigo. About the only cons to the procedure are an increased risk for ear infection and the fact that you cannot get water in your ear. The tubes tend to fall out after several months, but they may stay in for a long as a year to 18-months. When they do fall out, they can simply be replaced. These are the same tubes kids with chronic ear infections have placed in their ears.

Dr. Harris is funny. I really like the guy and I think he knows a ton about this disease, but just about every time we go in he pulls another rabbit out of his hat that throws us for a loop or, sometimes, even seems to contradict something he said at a previous appointment. I don't think it's because he's losing his mind, I just think that since there really seems to be no set algorithm for treating refractory MM, such as I have, that everything is a crap shoot.

But, for now, I'd rather follow through on one treatment at a time because if I am doing two or more things at once and things get better I will never know which treatment worked. And I still have high hopes that gentamicin will be my golden ticket off the ghost ship Vertigo. But I will consider the little round grommet as a potential floation device if this ship begins to sink.

Feelin' Funky, Funky

2011-01-26T17:53:00.000-08:00

Head's full of marshmallows
Ear's buzzing a like a bee
Where this will all lead
I will have to wait and see

I'm a poet and didn't know it...

Another Good Day

2011-01-25T22:19:00.000-08:00

It has been 7 days since my last vertigo attack, minus a mini attack a few nights ago. But those happened to me a few times after the first gent worked, so I am not concerned and actually relieved that something is starting to feel familiar again.

My balance doesn't seem to be nearly as affected this time around... so far. Not sure if that is good or bad.

I am also noticing that I am having a hard time focusing my eyes when there is a lot of motion around me, again similar to what I felt back in April of last year. For example, today I was sitting in a meeting at work, the lights were dimmed as we were watching a motivational speech by the late John Wooden (Wow! What a brilliant, eloquent man) and I kept getting these mildly "floaty" sensations. I don't know how else to describe them. Pre-MM I would have been completely freaked out and started panicking, but now they are just relatively friendly reminders from The Evil One. It is there and It doesn't want me to forget It.

I said it before, and I'll say it again: if you can't beat 'em, join 'em. I give these little things a mental hug and hope in the end that Good does in fact win over Eeveelllll...

Is it really working this time???

2011-01-24T08:39:00.000-08:00

The gent, I mean.

It's been 3 weeks and 4 days since my last shot which can be the typical window in which the effects are likely to take hold. So there's a little personal experience and scientfic evidence behind my optimism here. Thanks also to a fellow MMer who got me past the 2-week point when I was still getting vertigo for telling me she didn't feel anything until 3 weeks post-shot. You know who you are and thanks for the encouragement!

Yesterday my ear started buzzing a bit and continually ramped up throughout the day. By bedtime I was feeling those off-kilter feelings that precede a full-blown vertigo attack. So I took 2 mg of Valium, which historically has never prevented an attack for me, it just takes the edge off and I always have to take more once the spins really start up. But I fell asleep, slept through the night, and woke up with that sloshy, water-in-the-ear feeling that always follows an attack.

I think the gent is working. I REALLY hope I am not jinxing myself, but I am feeling giddy.

Coping

2011-01-24T07:27:00.000-08:00

I am not a religious person in the sense that I go to church. I was raised Catholic, however, and have attended services of many other Christian denominations in my early twenties. But organized religion ruined spirituality for me for many years for reasons that are not pertinent to this post. However, I have always been interested in world religions and through reading about and studying them, I found that many of their basic tenets overlapped with each other. Over time it proved to me that there is something larger than all of us. Despite my black-and-white scientific way of looking at all things, I am able to just accept that; but I don't necessarily try to understand who, or what, it is. I think that's what many call faith. And today I am spiritual, I do believe in God.

Whether facing MM, or any other life-changing event, we usually ask ourselves, “Why me?” And, “What if?” And, “How do I…?” Here is what I have concluded:

Why me? “That ye may be the children of your Father which is in heaven: for he maketh his sun to rise on the evil and on the good, and sendeth rain on the just and on the unjust.” Matthew 5:45

From working with sick and dying people everyday, I know that bad things happen to good people. I ask myself, instead, “Why not me?” I am grateful for the soft bed I have to lay in while my world spins, the family who comes to my side to care for me, the healthcare I have access to, the fact that all my basic needs are met, and I am not suffering under the hot sun in a third world country.

What if? “All there ever is is just this moment.” The Power of Now, Eckhart Tolle

I have no control over the “what ifs.” Yes, I give them some thought, put a tentative plan in place in my mind, then I try to let it go. I have to work on this one quite a bit still. But I have what I have, good and bad, in this moment. When I focus on this very second, all worries about the future and slights from the past do not exist and I am free, at peace.

"For there is nothing either good or bad, but thinking makes it so." Hamlet

How do I? Here I am talking about accepting all the imperfections of life, including MM. From the most basic tenet of Buddhism: suffering is the result of wanting things to be different than they are. And from a translation of The Tao, “Perfection is the willingness to be imperfect.” I have internalized these and both have brought me to a place of acceptance.

So that’s how I cope.

All My Money's On Gentamicin

2011-01-23T18:46:00.000-08:00

I promised to write about all the treatments I have tried over the last two years. There are several. None work for everyone, but all work for some. My favorite treatment option to date is gentamicin. Warning: sorry, but this is a long post…

For me, vertigo is sometimes a spinning sensation, but usually it is much more like being on a dinghy in a hurricane. It feels like severe motion sickness with varying degrees of waves and hairpin curves. My eyes always dart back and forth (nystagmus), making it difficult to keep them open for any length of time. Sometimes even keeping my eyes closed is miserable, so that is the worst kind of attack. Every attack is slightly different and certainly some are more severe than others. But they are always debilitating to the point of barely being able to walk, if at all. I keep a small bucket next to my bed for the “rogue waves”, those waves of legend sailors report as coming out of nowhere and virtually swallowing large ships. I can count on one hand the number of attacks I have had so far where I have actually vomited, but when I have they were marathon periods of dry heaving for 8 to 12 hours at a time. Fun stuff.

When I have not responded to one treatment or another over the past two years, I have a pretty regular pattern of vertigo: every 3-4 days, for 6-12 hours at a time. I generally have a prodrome of symptoms that include increasing pressure and fullness in my right ear and a deepening tone of the constant tinnitus I hear until it reaches a buzz that sounds and feels like a very loud gnat in my ear. I also get very foggy-headed and have zero tolerance for noise, even though my hearing worsens in the days and hours before an attack.

It was discovered decades ago that gentamicin, an antibiotic used for severe infections caused by gram-negative bacteria and streptococcus aureus, is also ototoxic. Its side effects can include hearing loss and vestibular disorder caused by the damage the drug can do to the hearing and vestibular hair cells in the inner ear. Some either crazy, or perhaps compassionate, doctor decided to inject the drug directly into the middle ear of Meniere’s patients where it can cross the round window membrane and bathe the entire inner ear where these little hair cells reside. Fortunately, the vestibular cells are somewhat more sensitive to the destructive effects of gentamicin, so with low doses hearing loss can be avoided or at least minimized while hopefully just enough vestibular hair cells are destroyed to prevent the ear from causing vertigo.

So after trying, and failing, a handful of nondestructive conventional and alternative treatments to control my vertigo, I had my first transtympanic gentamicin injection on March 25, 2010. I had one or two vertigo attacks in the 10 days that followed, but then a constant, but very tolerable, degree of imbalance set in. Let’s just say I couldn’t pass a field sobriety test for about a month afterward. But I was not nauseated and I really started to feel great for the first time in a year. I forced myself to walk daily to help my eyes, good ear, and muscles compensate for the loss of balance signals now being sent to my brain by my right ear.

That first shot gave me eight months of freedom from vertigo. I had some minor spins in the first couple of months and had to take a Valium or two to settle them down, but I had all my confidence back and did anything and everything like I did before. I still had varying degrees of ringing, mini-spins on occasion, and could tell my ear was still cycling through the attacks at their usual rate, but I just didn’t get vertigo.

As I had read and my doctor had warned, the vertigo came back. No one knows why or how this happens, but it is well-documented and common sometime between the 7^th and 9^th month post-injection. While terribly disheartening at first (and that first attack was one of those marathon barf-fests), I knew I would only need to get in for a touch-up shot which should work again just like the first shot. So after begging the doctor’s nurse to squeeze me in two days later, on November 18, 2010, I got a second shot.

I waited patiently for two weeks. Nothing. My symptoms, although a tad milder, continued. I continued to wait out the six weeks for my next appointment. At that November appointment, my doctor was clear: if the 2nd shot didn’t work, we were going to have to have a long talk. He was concerned that too many gent shots could cause a “dead ear.” So with that, my husband and I decided a second opinion was in order. I will try to remember to write a separate post about that experience. But, in a nutshell, we had prepared to move forward with scheduling surgery (also a topic for another post).

December 30, 2010 rolled around and we went back to my doctor. My hearing was stable (10-15% loss), my symptoms were still terrible, and he agreed to another gent shot. These, for me anyway, are really so easy and painless, that I jumped at the opportunity to try again.

It’s been three weeks and I have had more good days than bad for the first time since the beast reared its ugly head two month ago. I have still had one or two vertigo attacks a week, but they have been somewhat shorter and quite a bit milder. I still cannot get up and function through them, but with the help of Valium I can generally sleep through most of the attack.

I go back to the doctor on Thursday, January 27, 2011. We shall see how my hearing is (feels the same) and how I feel between now and then. A lot will depend on the next few days whether or not I feel the need to have another shot this week.

I hinge a lot of hope on gentamicin. There are many positive studies and accounts to support its use in the treatment of MM. I am keeping my fingers crossed for another long remission. Studies on the longevity of the treatment are somewhat slim, but some suggest that gent can in fact provide permanent vertigo relief for some people. So far I keep falling into the small minority of failures, but I hope my luck will change.

Fast Forward to Today

2011-01-22T15:37:00.000-08:00

So here's where I jump in and start writing about where I am now, today.

Today's a good day. Actually four days in a row and I don't feel an attack coming on yet. The cycle is, at minimum, changing since my most recent gent shot. At best, I usually get one or two days of feeling 95% normal before the cycle of ear pressure, tinnitus, and a general foggy-headed feeling build up to another brutal attack of vertigo.

In all fairness, everyday is a good day. I have been learning how to cope with the cycle. I have plenty of support lined up to get kids where they need to go and my employer is amazingly supportive and flexible. And my husband, well he is a saint, and always rises to the occasion without contributing one ounce the the guilt I feel when I miss time with him and the kids.

The two hardest things I deal with now are not being able to plan ahead, especially when it comes to planning playdates or other commitments that come with being a mother, and the short-term memory loss I have when I am foggy-headed. So much energy just to get through simple tasks on some days. And if I happen to be at work, I feel like I have to double check every calculation I do and often get home at the end of the day and wish I had told someone something that didn't even occur to me at the time.

But, oh well. The reality is that the people I care for through my work are in far worse shape than I in most cases, so I am humbled by their courage and tenacity despite that many are bedbound 24-7, are looking death straight in the eye, or just plain suffering from chronic pain. It really helps me keep MM in perspective.

My Theory

2011-01-22T08:33:00.000-08:00

If you are unacquainted with Meniere's Disease (MM), then start here.

If one buys into this theory that MM is a disorder of inner ear fluid balance which can be affected by dietary sodium intake, and I do for now for lack of a better explanation, then here is what I have concluded happened to me:

For approximately two years prior to my first vertigo attack, I had been to my doctor on several occasions complaining of my ears feeling plugged up. Deep inside the ear. No pain, I just couldn't hear well and I felt a lot of pressure. Despite my insistence that I did not have sinus pressure or congestion nor did I have any other signs or symptoms of allergies, she recommended I try several different allergy medications and decongestants over the years. None seemed to make a bit of difference and my ears continued to plug up randomly. I generally woke up with the feeling in the morning and by noon, I think, the pressure subsided and I forgot about it until it happened again. I think I went months in between without problems and even when I had that plugged up feeling, it occurred very erratically. So I just lived with it. I began sleeping with my head elevated and stopped using my down comforter. In hindsight, I believe it was the initial stage of MM.

I also believe it is significant that I had a meal at a restaurant the night before my first vertigo attack that was so salty I, one, even noticed it, and, two, remembered it. I can remember to this day how salty that otherwise delicious gourmet organic vegetable dinner tasted.

As the theory goes in MM, the inner ear loses the ability to regulate the passage of fluid across the endolymphatic membrane and a diet high in sodium can lead to the sac becoming so engorged with fluid that it ruptures. The fluid builds up, causing pressure and muffled hearing. Eventually the sac ruptures and it is the sudden decompression of the endolymphatic sac that is thought to cause the little vestibular hair cells (and hearing hair cells, for that matter) to become so disturbed as to lead to intense vertigo and hearing loss. As the membrane heals over the next several hours, the vertigo subsides and hearing is gradually restored. Over time, however, permanent damage can occur from repeated attacks and balance and hearing are eventually compromised beyond repair.

In my case, and everyone is different, I believe that the first few attacks I had left a permanent weak spot in the endolymphatic sac, causing it to rupture every 3 or 4 days like clockwork. This continues to occur regardless of how little salt I eat. I know I have gone as low as 1,200-1,500 mg a day for months with no change in the pattern or intensity of my symptoms. I have had periods of relief with some treatments, and I will write about each in other posts, but I believe that little sac is so damaged that it does not allow for the longer periods of relief that some other classic MM sufferers experience.

I still watch my sodium carefully. I think I hover around 2,000 mg most days. And I continue to take the diuretic. I do these things just in case my good (left) ear is even thinking about going bad. I hope that if I do become bilateral someday, and some days I suspect it is misbehaving, that I will at least be able to minimize the frequency of attacks and that that ear will respond better to more conservative treatment.

Growing Up at 40

2011-01-22T07:24:00.000-08:00

On June 10th, 2009 I was at the end of my 40th year.

It was the date I saw Dr. Harris for the first time and he confirmed I had Meniere's Disease.

I left his office with a prescription for a diuretic. It was the first real prescription I had ever had beyond birth control pills. Aren't "water pills" only for old people with high blood pressure?

It was the date I got glasses for the first time. Since getting vertigo for the first time, I began having trouble focusing my eyes for periods of time following an attack. The eye doctor didn't believe it could be related to the vertigo, instead he said it was due to astigmatism and I walked out of his office with a pair of $600 glasses. I am still glad I have the glasses on certain days, but I DO believe my vision fluctuates in the hours after a vertigo attack because of the nystagmus. Do I really need glasses? I don't know.

We closed escrow that day and became homeowners for the first time in our adult lives.

It was the kids' last day of school. They had finished the first and second grades and were excited to be moving into a house with stairs.

Yes, on that day, I finally felt like an adult.

Today is the First Day of the Rest of Your Life: April 1, 2009

2011-01-21T20:55:00.000-08:00

I awoke that morning like any other, stood up to walk to the bathroom and immediately did a one eighty back to bed. OMG! The room was spinning and so, once back in bed, I laid perfectly still, eyes closed, and began to feel panicked. After a little while, I surmised I had a hangover and began to relax. And get angry.
I had asked the waiter the night before how the mimosas were made. I know I cannot drink Champagne. Even a small glass leaves me miserable the next day with a headache and an all over icky feeling. He assured me the restaurant made their mimosas only with organic Chardonnay. Wine and I get along fine, so I had three: one before dinner, one with dinner, and, not being the designated driver, one for the road. Nothing beyond my usual level of tolerance.

As I lay in bed that morning, I cursed the waiter. Damn, those mimosas had to have been made with Champagne. I accepted I had a hangover and swayed myself to the bathroom to lay on the cold floor, just in case. My husband chuckled and got the kids off to school. Three or four hours later I began to feel better and chalked it up to a lesson-learned. No more mimosas for me.

The next three weeks were uneventful. Then, one night as I sat down to eat dinner, my ear made a loud popping sound and once again the room was spinning. This time I sensed something was wrong. This felt too similar to what I had felt on that fateful April Fool's Day. Again, I felt better after several hours, as if nothing had happened.

However, the next few days I continued to have shorter bouts of vertigo and dizziness. And my husband pointed out that I was "deaf." I took Sudafed to no avail, my ears felt so plugged and I couldn't hear anything. By about the 2nd or 3rd day of this, I called and insisted on getting a doctor's appointment that day. My regular doctor was out so I saw her colleague, a nice guy about my age. He assured me I only had benign paroxysmal positional vertigo (BPPV) and relayed to me his own experience with it. I was not convinced. I had vertigo no matter what position I was in. My hearing was shot. And the vertigo always subsided after a few hours. But I hoped he was right.

Even at this early point I began to suspect Meniere's Disease. Toward the end of her life, my grandma was given this diagnosis. As we were very close, I remember her having a vertigo attack that sent her to the hospital in an ambulance. From that day on she took meclizine every morning. This was sometime around 2001 and I later recalled the frightening words I had read about this disease as I researched her diagnosis on-line: vertigo, deafness. Disability. A disease, I quietly thought, I hope I never get. I remember that thought like I had it yesterday.

A few days later, and more research, I was convinced I needed a referral to an ENT. Again Dr. Nice Guy was covering for my usual doctor when I called to ask for a referral. He refused. Said I just needed to give it time. I suggested I thought I might have MM (aka Meniere's Disease), but he assured me this is very rare and to wait it out. Fortunately for me, I have a PPO, so I referred myself.

A week or so later, I was seen by an ENT, Dr. Bone. Ok, now I am cracking myself up. I get MM on April Fool's Day and then go see a guy named Bone. He was actually a very serious guy, probably would not appreciate my crack about his name. Regardless, he took me seriously, ordered an MRI (or was it a CT scan) to rule out a brain tumor and referred me to his colleague, a neurotologist who specialized in vestibular disorders.

At this point, I almost hoped it was the tumor they were trying to rule out: an acoustic neuroma. By then I understood that MM was a difficult disorder to treat and that a tumor could be surgically removed with a relatively high success rate.

But my brain scan was normal and my new doctor, Dr. Harris, confirmed my fear: Meniere's Disease. It was now late May or early June. In hindsight, I was so fortunate to get a diagnosis so quickly. I have read about so many people suffering for years with the wrong diagnosis and wrong treatments, if they got any at all.

Again, more reassurance. Dr. Harris said 80% of people respond well to diuretics and a low salt diet. I took this as a challenge. Being a dietitian, I could handle any dietary restriction. This was a race I could win. I would be his star patient! I would be in the 80%! How could I not be?

Huge failure...

The Day Before All Hell Broke Loose

2011-01-21T18:56:00.000-08:00

March 31st, 2009, was a turning point for two reasons: it was the last day of my life as I knew it without Meniere's Disease and
the first day of my life to find what would become the first home we would come to own.

Even nearly two years later, it's funny to me how certain details of that date are imprinted in my memory. I had worked that day, rushed to pick up the kids from school at 3:00, and come home to get ready to go out to dinner with a few friends from book club. About 4:00 pm I called in an order for pizza at Costco and hustled the kids back into the car to go pick it up.

As I pulled out of the driveway of our rented home, I noticed activity at the vacant house up the street. No one had lived there during the entire three years we had been in the neighborhood. It was a sad, old house overrun with wild juniper bushes and ice plant. Wood shutters in the upstairs windows were closed and an eyesore. But oddly I had always felt a connection to the house. While we waited patiently for the Southern California housing market to return to its senses, I guess I felt on some level this house, or at least one like it, would finally be our ticket to home ownership. So when I saw the worker's car parked in the driveway and the front door open, I slowed down, but kept driving. I got a block away then impulsively made a u-turn back to accost the poor guy laying tile in the upstairs bathrooms.

It turned out he was the son of a neighbor who knew the owner. I got them to give me the woman's name and number and the rest is history. The excitement I had that evening about the possibilty of buying this house rates up there with the night my husband proposed to me, finding out I was pregnant each time, and the news that I was pregnant with twins; the future possibilities and the feelings that go with with them. And really not the point of this whole story. Regardless, it was a moment I will never forget. It is pertinent because it lends a positive twist to the downward spiral in my world that was about to happen and it also began to be revealed to me that good and evil live in a funny parallel universe.

Dinner that night was uneventful except to say that I thoroughly enjoyed conversation with good friends, drank a few mimosas, and ate a delicious dinner at this very cool place serving only locally grown organic food. It was delicious, but oddly salty. I say odd because I love salt and, at the time, ate quite a lot of it, so for me to notice something was salty likely meant it was really salty.

I was home and in bed by 11 pm. Nothing out of the ordinary that I remember about how I was feeling nor any sign that my life was going to change in less than 8 hours...