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.
Monday, October 24, 2011
Tuesday, October 18, 2011
Kinda Icky Day
Woke up feeling all inflamed in the head: nose stuffy, head and thinking "cottony", hearing muffled... well, you get the idea. I know I'm preaching to choir here. It's on days like these I am reminded to be thankful for gent as this would surely end in a half-day vertigo marathon otherwise.
Days like these remind me to be realistic about Meniere's. There will still be bad days. But then again, there will be another good day, too. A little reminder to be grateful that this is all I have to deal with at the moment. It's not all that bad, plus it makes me slow down to smell the roses on the thorn bush..
So today I am grateful for gentamicin, having the day off work, and no pressure to perform anything requiring deep thought.
I must add one last thing: I am still better off since starting famciclovir, too. Days like these are not nearly as frequent nor debilitating as they used to be.
Tomorrow's another day...
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...
Monday, October 17, 2011
ABC Classic FM - Mornings - What is Meniere's disease? Professor Bill Gibson explains
ABC Classic FM - Mornings - What is Meniere's disease? Professor Bill Gibson explains:
I have great hope and respect for this group. This is a good listen from an expert on Meniere's disease.
I have great hope and respect for this group. This is a good listen from an expert on Meniere's disease.
Sunday, October 16, 2011
Looking for a paradigm shift?
This quote popped up as my "Quote of the Day" on my home page the other day and I just thought what a perfect way of looking at life:
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.
“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.
Saturday, October 15, 2011
Tiny Wisdom: Seeing the Good in the Bad | Tiny Buddha: Wisdom Quotes, Letting Go, Letting Happiness In
I like to follow this blog and this particular post speaks a bit to learning from our suffering. Enjoy!
Tiny Wisdom: Seeing the Good in the Bad | Tiny Buddha: Wisdom Quotes, Letting Go, Letting Happiness In:
Tiny Wisdom: Seeing the Good in the Bad | Tiny Buddha: Wisdom Quotes, Letting Go, Letting Happiness In:
Tuesday, October 11, 2011
Triggers?
A quick observation. Like many people with Meniere's, I have put a fair amount of effort into attempting to identify potential triggers. Rather than reinvent the wheel, I started off researching those triggers commonly listed by other Meniere's suffers. Things that tend to pop up frequently are salt, chocolate, alcohol, caffeine, stress, and lack of sleep.
After two years at it, I can say with confidence that I have not been able to identify a single thing that I do, don't do, eat, or don't eat that will bring on or prevent a Meniere's attack with any consistency.
Just my own personal experience thus far...
After two years at it, I can say with confidence that I have not been able to identify a single thing that I do, don't do, eat, or don't eat that will bring on or prevent a Meniere's attack with any consistency.
Just my own personal experience thus far...
Allergy Testing, a la House Ear Clinic, Part I
I woke up at 4 am this morning after a fitful night of little sleep to make it to L.A. for my 8:30 appointment at the House Ear Clinic to have (more) allergy testing. I was very tired on the 2-1/2-hour drive up there, but I had my four shots of espresso and the new Ryan Adams album download, Fire and Ashes (listen free here) to keep me company. While there was little traffic, and I did arrive an hour early, my check engine light came on as I neared downtown L.A.! This is not a part of town where one wants to break down, especially at 7:00 in the morning. I had a moment of panic and ran through a quick contingency plan before I realized that there were no weird noises coming from anywhere in the car and that it was still moving forward at a normal rate of speed, so I just carried on. I did text my husband once I got to the clinic, just to give him a head's up to stay close to his phone. Obviously, I ended up making it home safe and sound.
But I digress. As you may recall I had scratch-test allergy testing this past spring which did not result in the identification of any specific allergies, just "nonallergic rhinitis."
I took these results to my doctor at House and he referred me to their allergy specialist, Dr. M. Jennifer Derebery. I visited her last month and she recommended more thorough testing. So thorough, in fact, that the testing spans four days! I started today with the first of two days, half days really, devoted to inhaled allergens. The other two days will be spent testing for food allergies.
I think I got somewhere around 50 shots in 2 hours this morning. About 2/3 of them on my right, upper arm. These shots are just like getting a TB test, but the results are read 10 minutes, not 2 days, after the subcutaneous injections. Most were relatively painless, but a few stung a bit. Apparently some are given at higher antigen concentrations and these are the ones that burn. Good opportunity to practice meditation.
I don't have any final results to report yet, but the nurse did point out that my largest wheal was from cat antigen. Sorry Maisy and Daisy! The second largest wheal came from horses. Some others included grasses, weeds, and feathers. These all rated moderate to mild responses, so nothing to panic about. But at least I am feeling a little less crazy for having unexplained nasal inflammation. Though I do have a secondary theory that it could also be explained by a chronic inflammatory response to a theoretical viral infection. But more on that another day.
I head back to L.A. next Tuesday. I hope I get more sleep the night before this time! Stay tuned for Part II...
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...
Thursday, October 6, 2011
Live for Today « Cancer
No, I don't have cancer. At least not that I know of. Cancer is on my mind, though, on this day following the death of Steve Jobs. In the ensuing media coverage, I happened across an interesting article written by an oncologist detailing the experience of one of his patients. I could relate to what he described she and her husband had been going through trying to fight her disease. I thought others with Meniere's might relate to this, too.
Even though Meniere's is not a life-threatening condition, it is definitely a lifestyle-threatening disease. The symptoms, at times, can be so debilitating that you begin to feel as if you are dead. Or at least life as you know it is. So when you are able to sit up and read again, it is easy to become obsessed with finding a cure. It can become all-consuming, this search for relief.
The problem with searching for a cure for, or even relief from, Meniere's disease is the fact that it is classified as an idiopathic condition, meaning no one knows for sure what causes it. In fact, there may be more than one cause. And the cause, whatever it is, is likely multifactorial. So discovering a cure is no easy task, especially for a layperson with only the internet at their disposal. Certainly if there were an easy answer, it would pop up in a Google search, right?
There are, however, treatments for the worst symptom, vertigo. The least invasive options available often result in short-term or incomplete relief. The more permanent, yet destructive, procedures are, of course, destructive, meaning that one ends up with permanent hearing and/or vestibular loss. And because the progression of the disease in an individual is very difficult to predict, it becomes a tough call whether or not to go that route and when. Somewhere in between, it is easy to become lost in the land of complacency. In that place, not only does the physical suffering continue but the mental agony can become overwhelming and all-consuming.
Back to the cancer patient. In the beginning of the story, she had been afforded a relatively brief remission from her disease thanks to chemotherapy, during which time she resumed living a full life. But, when the cancer returned a year later, threatening to take her life, her husband dove headfirst into finding a cure for the beast. Together they devoted excessive amounts of time pursuing and attempting alternative therapies which not only didn't cure her cancer, but also contributed greatly to her physical and emotional suffering. At the end of the story, and by the sound of it, near the end of her life, the patient and her husband returned to the oncologist in despair. He was struck by the amount of additional suffering they were experiencing through their futile attempts to cure an incurable disease. The doctor pointed out that she was not living what life she had left to the fullest extent still afforded by her condition and, perhaps even worse, wasting what valuable little time she did have left to enjoy the simple pleasures of life.
While I am not a complete pessimist, I have to say that there has to come a time where one must find balance between hope and reality. The trick is knowing where that line is. Just as I don't believe anyone should suffer any unnecessary physical pain, I also believe one should seriously give consideration to whatever destructive procedure is available to end frequent, debilitating vertigo. We can't help ourselves sometimes and become paralyzed by the fear of missing out on the path not taken. We certainly don't want to intentionally burn any bridges for a future cure but, in the absence of a guarantee, we sometimes just have to accept the best the moment has to offer and carry on with life and all its imperfections.
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.
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