Life of Pi

We took the kids to see The Life of Pi last night.  I had read the book about a year ago and really loved it, but the beauty of seeing a movie is that the beginning is still fresh in your mind by the time the end rolls around.

I had forgotten about all the symbolism in the book.  As I was walking out of the theater and discussing the movie with my husband and kids, I started to wonder about the story those of us with a chronic illness tell ourselves.  In reality, there are only the facts of any given situation, however we often have to come to conclusions based on limited data, so as humans we manage to create elaborate stories around it.

As an example, I find I will latch on to bits of information about Meniere's disease my doctor has told me or something I've read on the web to help me understand what is happening to me.  My mind will accept something as fact on limited data only to be humbled by a conflicting piece of information down the road.  This can either be deflating or elating, depending on which story places me in a better position to be hopeful.  In either case, it is an emotional roller coaster.  And based on a story built on limited facts.

I won't give the end of the Pi story away but I will tell you that it left me thinking that oftentimes you just have to believe the story of others on faith alone.  However, the story we tell ourselves might just be the one that gives us the most hope for the future so we conveniently select, or embellish, the facts in order to make our situation tolerable.

(Another) Failed Attempt at Diuretics

When I was first diagnosed with Meniere's disease, my local doctor started me on hydrochlorothiazide (HCTZ), as diuretics are often the first line of treatment for attempting to manage symptoms.  I took it for almost 2 years with no appreciable effect, however I was afraid to stop in case I might actually feel worse by not taking them.  Though, at the time, that was hard to imagine!  I also religiously followed my doctor's advice to eat a low sodium diet and avoid alcohol and caffeine.

After getting gent injections and starting on famciclovir and allergy shots, my symptoms stabilized greatly so I felt confident in stopping the diuretic and liberalizing my diet a bit.  I am still careful with my sodium intake, to protect my other ear (in theory), but I do drink 2 cups of coffee a day and have an occasional glass of wine without any apparent negative effects.

However, in the past year I have woken up twice unable to hear well out of my good ear.  I felt some mild pressure in there, as well.  As in the early stages of my bad ear going south, the pressure dissipated over the course of about 24 hours and, inversely, my hearing improved over the same time period.  The evening prior to the most recent episode, we had guests over for dinner and I know I ate a lot more sodium than usual and I also drank several glasses of wine.  When I reported this to Dr. Derebery at my last appointment in October, she encouraged me to watch my diet more carefully and suggested I go back to taking diuretics, prescribing triamterene-HCTZ (Maxide) this time.  She did add the caveat that I could take just 1/2 to 1 tablet, as needed, if/when the symptoms returned.

I figured I'd give 1/2 tablet a day a try to see if anything improved in general.  By the second day, I felt terrible.  I was constantly dizzy.  Not a low blood pressure type of dizzy, but a change in ear pressure type of dizzy.  It reminded me of how I felt those first 2 years on diuretics.  Looking back, I wonder if a lot of my suffering could have been attributed to the HCTZ?

I stopped taking the triamterene-HCTZ after those first few days and the dizzies stopped.  I will, however, to continue to follow a low- to moderately-restricted sodium diet.  Just in case.

Good Days

As most people with Meniere's know, there are a lot of ups and downs in living this disease.  When you're sick, you wonder if you'll ever feel better and, when you're well, you wonder when the beast will rear its ugly head again.

In July, after my last post, we travelled to Yellowstone National Park to visit my in-laws who happen to live there in the summer.  We had been once before several years ago when the kids were little and before I had Meniere’s disease.  We were excited to take the kids back now that they’re older and could appreciate the amazing beauty of the park.

I had been feeling much better in the months preceding our trip, thanks to starting allergy shots in the early spring.  Even though I still was having some stretches of imbalance and fatigue, it was nothing I was too concerned about.  So I packed my Valium and felt confident I could make the trip without any serious problems. 

I did well on the drive up to Yellowstone, including our stops in Las Vegas and Salt Lake City, but, 24 hours into our 4-day stay in the park, I began to have vertigo again after more than a year vertigo-free.  The first time, I was all alone, with no cell phone reception, in the lobby of the Lake Hotel.  It was very scary, but I tried not to panic, took a Valium and rested on a sofa in front of the fireplace for about 30 minutes.  I was then able to meander back to our cabin across the parking lot and collapse in bed.  It happened again in the middle of the night, as well as the next day on the drive to see Old Faithful.  I felt terrible asking my husband to turn around and take me back to the cabin.  At that point I knew I would not be able to even get out of the car and they would not be able to enjoy themselves worrying about me sitting all alone, waiting for them.  I felt even worse the next day when my family decided to cut out our next planned stop in Jackson, Wyoming out and just get me back down to Salt Lake City.  In the end, it did seem the 7,700-foot elevation was what brought the vertigo on and, thank god, it has not come back since.

Despite the fact that the vertigo again went away after we left the high elevation, I was off-balance and exhausted for the next two months.  It was all the more stressful by coming home to many new changes.  All in the same week in August, I started a new job, the kids went back to school, and my parents came for a visit.  It was a very busy time and I was really struggling to just get through each and every hour. 

To make matters worse, no one at my new job knows my history or even that I have hearing loss, so I really had to put on a good face and hope for the best.  I really worried the constant dizzies and exhaustion might be my new normal and that I might not make a good impression in my new position.  But, somehow over time,  I have found myself back to a tolerable baseline with day- or two-stretches of minispins and bouncing sensations alternating with periods of feeling pretty good.

I try not to think too much about the future.  I am pretty pessimistic about staying well indefinitely.  My goal has always been to just get my kids raised and to give them as normal of a childhood as possible.  I have 8 more years to go and will do anything to get through them as vertical as possible.  In the meantime, I continue to just be grateful for each day I am able to leave the house on my own and contribute to the lives of those around me.

Hearing Aid, Good Book, and Motivation to Blog

Yes, yes, it's been a very long time since I've posted anything to my lonely little blog.  The reasons are all good, though: it's simply that I've been mostly healthy and very busy with a new job, the kids, and just living life.  It has made me very grateful for this time of relief as this disease has made me realize our health can be taken from us at any time.  Knowing this firsthand makes me appreciate the good times and prioritize what I want to do and accomplish during them.  It's a good life lesson.

I will try to write in more detail on another thread about my decision to finally get a hearing aid, but ultimately I did finally come to the conclusion that I shouldn't put it off any longer.  My hearing loss became really exhausting to live with and I could see it was frustrating everyone around me, too.  I hated to spend the money, not because I'm not worth it, but because my family has had other medical expenses this year and I just kept thinking if I could just pay those off first, it would be better to go that route.  Oh, well, it's been a good decision and I am happy overall with the result of the hearing aid.

Finally, my motivation to try to write more consistently has come from reading this book:

Finding Balance, by Sue Hickey

Wow.  I am only half way through it, but I find I can relate so much to the author's experience in finding a diagnosis for, and living with, her vestibular disorder.  Her condition (at least what I know so far) is different from mine, and it only took me a few weeks (not two years!) to have a name for what I have, but nevertheless she has had to journey through dealing with the general lack of knowledge about vestibular conditions by most medical professionals, understanding and accepting her limitations, and finding a way to live with and accept this beast of a disease.  I can't recommend it enough to anyone with a vesitublar disorder, if only to commiserate with another person who understands the strange ups and downs of it all.

So here's to trying to put fingers to keyboard again!