Meniere's– "As The World Spins"

**WARNING:  DO NOT READ THIS UNLESS YOU REALLY WANT TO KNOW WHAT A GOOD DAY FOR ME IS LIKE!**

Yes, I put a warning at the beginning of this post.  There are so many people who believe that every person with Meniere’s is the same.  What you are about to read is what it is like for me on a good day.  This could perhaps be a really bad day for someone else you know or a day that others could dream of having as a good day.  Those who have known me since before I got sick expect me to be the same independent, vibrant go-getter that I used to be.  Well, I hope after reading this you will understand why I can’t leave my apartment when it snows or there is ice.

Since last spring I have been fighting to get disability.  It seemed no one wanted to listen to me or take the time to really help me through this struggle.  Even my attorney’s didn’t want to be bothered with finding out what was really going on.  Finally, in the last leg of this race I was able to speak to a supervisor in the attorney’s office and made him listen to what I had to say.  The following is basically what I said to him and have been using ever since.

If you want to know first hand what it is like to experience one of my good days, and keep in mind this is a GOOD day, take your iPod and load it with  the sound of a kazzillion crickets   ATA_Tinnitus_Buzzing_Tone.  Place the ear buds snugly into your ears.  This will diminish your hearing, so make sure they are nice and snug.  Then turn up the volume and leave it on 24/7.  Then drink a six-pack of beer.  Or if you prefer a few shots of tequila or a couple glasses of wine.  Drink as much and whatever it takes for you to become inebriated.  Not fall-down drunk, but where you are off balance and staggering.  Now go about your day.

Yes, I walk around feeling intoxicated and staggering.  No, I do not have the pleasure of imbibing to get that way.  Any questions?

An eddy of pain and tears is what I have been experiencing for at least the past five months.  For those not exactly sure what I mean by eddy, well an eddy is a whirlpool in a body of water.  It is usually accompanied by turbulence and can wreak havoc on any vessel nearby.  Six years ago I loved the changing weather.  Not really a fan of snow and sleet since the first snow I ever drove in was a blizzard and I know how dangerous snow and ice can be (not to mention C-O-L-D).  But I did enjoy rain and its purifying properties in the spring and summer.  I would occasionally sit out on the deck and watch the rain as it fell on the cemetery and playground of the church next door.  It was calming and relaxing.  Now, not so much.

If you live in the Knoxville area you know how much rain  (filled in with bits of snow here and there) we have had since December.  I gave up using umbrellas after being introduced to Meniere’s Disease.  You take a physically off balanced person and give them an umbrella, let a gust of wind come along and the result is Mary Poppins flying up the highway.  Getting wet is a better option.  Last June when my original grommets fell out, not only did I spin again for the first time in eight months, but I also gained a new trigger ~ the weather.  I really felt for those with Meniere’s who called themselves walking barometers, but honestly I hadn’t a clue what they actually went through.  Guess someone felt I should have first hand knowledge.  With all the rain and snow we have had, I have gotten to know my couch very intimately.

The incoming storm already has my ears going crazy

Sometimes I think I feel weather fronts moving in 100 miles away.  I can feel my ears crawling and start with a deep ache and look outside to see bright sunny skies.  However, by the time the front moves in, I am in so much pain from both my ears that I have a pounding headache to go with it and I am laying on the couch with the heating pad on my ears.  If I had to choose between this and having full vertigo at least once a month, I would choose my current situation.

I haven’t been able to afford to see my doctor regularly as he desires since I have no medical insurance and no regular income.  However, a couple months ago I was sitting on the couch with my laptop doing my usually Shabbat routine when all of a sudden the room began to spin.  It was all I could do to set the computer aside and lay down on the couch and remain still for a couple hours till it passed.  I knew I had to scrape the money together to go see the doctor.  I went in on a snowy/sleety/rainy day with the hopes that it was just a blockage that could be fixed with drops or suction.  My hopes quickly turned to tears when he said that the grommet in my right ear was dislodged with debris around it indicating blockage.  He couldn’t be sure about the left side so I had to have a pressure test run to detect the status of my eardrums.

I sat and cried.   When I was taken for the test, I walked through the hall clinging to the wall and crying.  It was determined that the right eardrum was closed over but we could not be sure that wax and debris had not gotten behind it to cause infection.  The left ear and grommet were intact and did not appear to be blocked.  I still cried.  I cried in part because I knew how much it would hurt to have the grommet procedure repeated and then it would take several days for me to get back to doing well.  The other reason I cried was recalling that it cost near $400 to have the grommets inserted last June.  I don’t have that kind of money.  One good thing was that it was found after reopening my right eardrum the doctor found that there was no debris, wax or moisture that got behind the eardrum to cause infection.  I have been caught in an eddy of pain and tears for  five months.  Hopefully now I can begin to maneuver out of the area and toward shallow waters if not the embankment.

The rain loves to wreak havoc on my ears and my head

I was looking at the posts on Facebook this morning and one of my contacts posted that she would accomplish all on her To Do list today, unless someone threw her a curve ball.  I replied that my life is nothing but curve balls and change ups.   Those who know me, know my love for baseball.  Those who have known me for any length of time know that I used to play center-left field on a softball team.  This post this morning really struck me.  Since I have been one of the “lucky” ones to have Meniere’s Disease, I have always equated it with roller coasters (I really hate roller coasters).  Today I thought for a moment and this was quite a chore since I woke up with my head and ears still driving me crazy.

Since November 2004, I have been on a wild ride.  I was invaded by a deceitful and utterly spiteful dragon.  Last week I was on the phone with the attorney’s office as my advocate helped me fill out the forms for me to get SSDI.  A lot of the questions related to how my life has changed since the invasion.  As I tried to focus (hard to do since I hadn’t eaten and my ears were going nuts) and answer the questions the best I could, I knew my life has changed, but saying it to someone else to make it official for the records just made it even more real.  Chronic illnesses have a way of changing everything about your life and make things even more difficult.  From walking to brushing my teeth, everything has changed.  I used to be able to walk, chew gum, juggle and carry a conversation at the same time.  I can no longer chew gum and have to stop walking to really carry a conversation.  Juggling, well I struggle just juggling day-to-day living.

Early November 2004, I was beaned in the head by a fastball called Galar Meniere’s.  Now everyday I dodge wild balls while trying to get even a base hit off of the curve balls and change ups that are thrown at me by this dragon.  I still look at it as a roller coaster ride, but the day in and day out of this is kind of like a baseball game.  So far he is winning, but I will play the game through and perhaps one day there will be a home run for all of us when they announce that they can finally answer all the questions that have been around since Prosper Meniere first began researching this disease in the mid 1800′s after it had been plaguing people since at least the 13th century.

For a few days my ears had been crawling with a bit of a dull ache.  It was manageable, but I knew the barometric pressure was changing.  I woke up yesterday morning and felt like I was laying on one of those rubber floats out on the lake.  I didn’t need to look out the window.  I just crawled to the couch and tried to be a civilized human being.  I didn’t last long in this state.  But while I was semi upright, I managed to pen my daily poem.  It follows.  The title is Galar which means disease in Gaelic.  I wanted the Gaelic translation for Meniere’s Disease and was able to get it and just used Galar to name my dragon in my short story The Damsel And The Dragon.  The dragon in the story is Meniere’s Disease and of course, I am the damsel.  I now use the term Galar when I am feeling the talons of this brutal beast.  So yesterday, it became the title of this poem.  I would say enjoy, but considering the topic…

Galar

The dragon is back
my ears to claim
his attack is brutal
driving me insane

my ears, they crawl
they burn and ache
I want it to end
for goodness sake

I cannot understand
how a God, so kind
can cause this ill
I’m losing my mind

please, someone
take sword in hand
slay Galar soon
erase him from this land

we are many
Galar seeks out
salt, allergies, weather
can begin our bout

the scientists only
through tests and research
can slay Galar,
remove him from his perch.

PLEASE HELP SOON!!!!

April 8, 2010

© DL Bach

A little ditty all those with weather triggers will understand.  This was my FB status up-date this morning.

Rain, rain go away
I’m trying to keep my spins at bay
If only I could hope and pray
I’d wish you somewhere else today.

I once had a writer friend of mine tease me about my ancestral heritage.  I call myself a J.I.G.  I am part Jewish, part Irish and part German.  He said the German in me wants to fight all the time, the Irish wants to drink it over first and the Jew just feels guilty about the whole thing.  Since I have been diagnosed with Meniere’s disease, he and many of those I have shared this with tell me to hang tight to the German side and fight.  I am done fighting.  Due to the medication I take, drinking is out of the question (though I really wish I could just drink it away).  I will, however, feel guilty for the duration of this illness.  Since there is no cure, I will feel guilty the rest of my life.  The guilt is what I feel for being a burden on anyone.  Whether it is trying to talk about it all the time or having to get someone to fill in for me at the last minute because I cannot tolerate the pain or off-balance that comes my way.

I am constantly getting comments from people, usually when I make a post about the pain I am in on Facebook/Twitter, saying I am in their thoughts and prayers.  Generally speaking there is nothing wrong with this.  People think that it helps to bring comfort to those who are ill or in pain.  For some perhaps.  I, however, am over it.  I started spinning again last week.  I haven’t been to the doctor since September due to no income and no insurance.  I scraped the money together and went since I knew something was wrong.  I was scared, nay, terrified.  I had to drive in the snow (since the first snow I drove in was a blizzard, I am always scared driving in snow.  That is coupled with the fear I have driving period since having a vestibular condition) and was severely off balance.  The pain was also hitting me hard.  There was no one to drive me.  When I IMd a friend to let her know (not that she could really do anything since she is in California) she was telling me to have fun in the snow and kind of missed the point of why I was letting her know.

I was anticipating never returning home from that appointment.  My two doctors and the two nurses could see how scared I was.  I got a few hugs and arm rubs from them in an attempt to reassure me.  They had to repeat the procedure to re-insert another grommet into my right ear.  Unless you have had this procedure done, I cannot explain how it feels.  But since I usually scream for the duration, that should be some indication to you. It is during this that I really realize how alone I am.

It is nice to tell someone you are thinking and/or praying for them, even if you are not.  But during these times, it would be really nice to have something or someone other then my stuffed teddy bears to hug and have hold me to reassure me that it will be all right.  Each time I go through this, whether the weather related issues or needing to have the procedure repeated, it strips away more of me.  I have no fight left. I have no strength left to even thing about fighting.  I have come to the conclusion that it takes people really being there for you (not just in word or thought) to help you replenish your will to fight and your faith and belief that what you are fighting can be conquered.  Galar will defeat the damsel in the rewrite of my short story The Damsel And The Dragon.  Meniere’s has won the war.

A year ago I had grommets inserted into my eardrums for the purpose of being able to use a Miniette device.  However, I found it was the grommets and not the Miniette that put me into the “well controlled” category.  Before this, my known triggers were stress and being a girl.  the grommets were supposed to last about nine months.  This should have taken me to mid July.  However, as my neuro-otologist pointed out, I am not normal and have trouble following standards.

The third week of June, just one week before my scheduled appointment with my doctor, I decided to relax in bed for a while before getting up to enjoy the Shabbat.  I rolled over on my left side and tucked the pillow up under my neck.  At this point I felt a ‘crunch, crackle and pop’ in my left ear.  I lay perfectly still for a bit, afraid to move, not knowing what was happening.  When I finally sat up my world was spinning.  I had not felt this way since mid October.  I made my way to the couch and pretty much remained there until Monday when I could call the doctor.

Anyone who has Meniere’s or is close to someone with Meniere’s, knows how unpredictable this monster is.  by the time I got in for my Friday appointment, we had determined that I now have a third trigger ~ WEATHER.  Now I fully understand those who refer to themselves as “walking barometers”.  We got new grommets inserted and this time they should last two years.

While I didn’t have issues with the original triggers after the grommets were inserted, I still have minor issues with the weather changes.  It seems that when the weather changes now I get a dull ache deep in my ears and experience some fluttering.  In the beginning of September I was lucky enough to get H1N1.  This proved to have a bad effect on my ears.  I had lots of aching and it seemed my hearing worsened.  When the illness cleared I noticed that I now have constant tinnitus in both my ears instead of just the left ear.  My doctor sternly advised that I not get either versions of the flu again for the remainder of the season. (As if…)

Earlier this week I was getting over what I initially thought was a second round of the flu, but  thankfully, turned out to be Acute Bronchitis instead.  My left ear began doing weird things so I put in a call to my otos nurse.  When she returned my call, we talked.  She reminded me about the weather and advised I take it easy and keep an eye on things and call back if they don’t improve or get worse.  you know, the usual blah, blah, blah.

Everyday we have ups and downs.  Right now it appears that I am on more of a Merry-Go-Round.  For four years I felt as if I was on a very wild roller-coaster.  I HATE roller-coasters, so I am glad I am no longer on that part of this ride.  I will accept being on a Merry-Go-Round with Meniere’s although I wish I could be on a real one instead.  I will continue to research (for now with a clearer head) and write my book while educating anyone and everyone I can about this dragon that invaded my life five years ago.  one day, he will be totally defeated.  Until then, my sword stands ready to fight whenever he comes to prey.