I just returned from trying to go to the market for food since it has been well over a week since I have bought groceries.  The pain from having the grommet reinserted into my right ear has finally subsided, but my head is still out of sorts and I still have the Xanax in my system.  My head was trying to think and I was adding a Facebook status update and this poem came out.  It was kind of long for the update, but I thought it would go nicely here.  Enjoy!!

As My World Spins

The world it spins
faster, then faster still
I want to get off
that is my will.

Someone please help
make the spinning stop
I really don’t care
if it makes me drop.

My head is foggy
things are unclear
no wonder I’m alone
and no one comes near

The fog and spinning
they make me feel drunk
then I get tripped
by a smug little punk

The weather front comes
and so does the pain
if a cure is not found
I’ll sure go insane

I still think it right
I’ll not make a show
But if you do see
I’ll look like Van Gogh.

March 8, 2010

© DL Bach

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.

I went to iTunes the other day and searched for Meniere’s podcasts. I found three podcasts listed.  All three were of a medical nature (Johns Hopkins, etc) and only had one or two episodes about Meniere’s and/or vestibular issues.  In my feeble mind, this is unacceptable.  I was looking for something that I could add to my iPod and crank up the sound and listen to to get tips and ideas for people who have Meniere’s from people who have Meniere’s.  There was nothing.  I want to change this.  It is my desire to start a podcast that covers this as well as flavors it with some technical information from the professionals (i.e.: Neuro-otologists, ENTs, etc).

Please leave a comment with your thoughts and ideas regarding this podcast formation.  Then send the link to all your friends and family to allow them to provide their input.  Even those who don’t have Meniere’s, but know someone with Meniere’s can have much to add to to help us and we in turn can help them.

Also, eventually, as I am still in the process of writing my book about Meniere’s, I would like to incorporate information gathered during the podcasts into the book.  It is still my greatest desire to do all I can to educate the world regarding Meniere’s and when the book is published ALL my royalties will go for Meniere’s research.  There is not a lot of education, publicity nor research for Meniere’s.  In fact, so many of us never heard the term Meniere’s Disease until we were in the process of being diagnosed.  I want that term to become as much a household term as Cancer and Diabetes.  I can’t do it without your help.

I was awakened this morning at about 0230.  While I took my Xanax before bed (trying to be a good girl) the pain still broke trough with my left ear and I couldn’t get back to sleep.  So here I sit with the local news on, coffee (which I rarely drink) sitting next to me and writing a couple blog posts.  In my foggy, painful haze tossing and turning trying to sleep for a couple more hours I had many thoughts going through my head.  One that resounded is what an awful and wretched person I must be to have such a horrid disease as Meniere’s.

I tried to have more pleasant thoughts to lull my back to sleep, but they just didn’t come and the next time I looked at the clock an hour had passed.  I figured that since I intended to get up early to go do the laundry and run errands I would just go ahead and get up now and try to do something productive.  Here it is.

It seems that when my head is in this Xanax/Meniere’s induced fog (at times lasting several hours after getting up) I have what I call my “hair-brained” ideas.  Some of them actually turn out to be good once te fog lifts and I can tweak them and think them through.  Others, not so much.  This morning as I tossed and turned and tried to find positive to return to my slumber, I thought about this blog and how idle it seems at times.  Then the proverbial light bulb went off.  Use the blog to relay information.  As the fog is trying to lift, I recall that was my actual intent when I first set this up.

During my early morning visionary thoughts, there was a crawl at the bottom of the screen.  “Surviving Meniere’s” was all it kept repeating.  Then I came here to post.  I have chatted on-line with many who have Meniere’s and while we cope and try to get our loved ones to think we are truly surviving, we are not.  We are in fact, just going through the motions and living moment to moment.

Surviving implies winning.  Every day that we make it through with out going stark raving mad, removing our ears or at worse eliminating ourselves is survival for us.  While some do not experience some of the symptoms that can really send you reeling, each part of this disease takes its toll on the body and soul.  With this in mind I am going to begin here in this series of Surviving Meniere’s and looking back at my last blog post which was a sort of chat with Mr. Van Gogh.  One thing you need to survive, or at least give the impression you are surviving is a sense of humor.  So dust yours off, or if you don’t have one, find one (beg, borrow, steal, buy.  Whichever method you can to obtain even a little bit of a sense of humor).

It can be difficult to find humor in this disease.  But when relating stories of your bout against the ugly dragon, the humor can find its way to the surface.  I had taught myself to drive with full vertigo and when someone would find out as I would chatting with them and we were both heading to our cars, I would tell them it was okay, because I was always good at coloring between the lines.  I would drive by focusing on keeping my car between the lines on the roads.  With horrified looks on the faces in front of me, I would always retort, “It’s okay, I will give you a head start out of the parking lot.”  This would invoke a chuckle and lighten things up regarding a nasty situation.  No, it may not be easy to find humor, especially when you have been full vertigo for days, but trying to can help put you at ease and thereby those around you are put to ease as well and can make things just a tad bit more tolerable.

Here is to a spin-free, pain-free day.

Chatting with a friend on Skype today I was brought to a realization.  The longer I remain in the “well controlled” grouping the more I can see some things clearer.  I think the thing that, at this time, bothers me the most is losing my hearing.  Yes, having a gazillion crickets in my ears playing in stereo 24/7 has the ability to drive me mad.  However, having had excellent hearing and being able to hear things others could not was a way of life and now that it is gone, I mourn.

I used to love hearing everything.  Never had to use headphones to hear normal things.  Now I require hearing aids or a headset to hear just the things that other people can hear without assistance.  The funny thing is that when I come in from attending a meeting or doing something that requires me to wear my hearing aids I can’t wait to take them out.  I hear every creak in the floor, the furnace clicking on and humming as it fills the apartment with warm air to take away the chill.  I remove the means of my hearing things and remark (occasionally aloud) “sometimes, silence is golden”.

I have had several conversations lately with friends and acquaintances who haven’t lost hearing.  They don’t understand the things hearing impaired folks go through.  They think it a simple fix to put on a headset.  For me, they hurt my ears and I can’t wear them for long periods of time.  Since Meniere’s tends to cause fluid to build up I find it difficult to put in ear bud and even my hearing aids.  So what do you do?

I have found there are many everyday sounds I am glad I can’t hear.  For others that I miss, I compromise.  Music is a biggie.  If I am listening to a song I knew from before I lost my hearing, i can pretty much understand, pretty much from the memory of it as opposed to actually hearing the words.  However, if it is an unfamiliar song, the words and music blend together and I can’t really understand.  I may know that the music is pretty or repulsive.  but the words will be a blur.  For this I go to my best friend, Google.

I can Google the lyrics of songs and then read them to understand.  Then I read them and listen to the song and it helps me to even better know the song.  I can no longer hear the nuances of music or vocals.  I can’t pick out the individual instruments.  I can however feel.  I can feel the music in my heart and soul.  I can feel the beat, real or imagined.  I can feel the inflection in the heart-felt words of the vocalist.  I may not be able to appreciate things the way most folks do, but I appreciate them in my own way and sometimes better as I can ‘feel’ things that those with good hearing take for granted.

I do apologize for being away for so long.  I have been having computer issues which have prevented my posting here.  I am back now and will have an up-date soon.

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.

One thing well known in the world of Meniere’s is how long it takes to figure things out. When I first presented in November 2004, I thought it was an inner ear infection. My second bout was February 2005 and I got the doctors involved. From there it took seven months to reach a diagnosis. Following the diagnosis it took several months longer to determine my triggers; stress and being a girl. Just this past June I added weather as a third trigger.

Diagnosis and triggers are only a part of the equation. I believe the longest process is determining treatment. While trying to determine what will help relieve your symptoms (if anything will) you work on treating the symptoms and the triggers. Since each person is different regarding their symptoms and triggers, so it goes that long-term relief is also different. Meaning, what works for one may not work for the next.

It took about four years from the time I first presented for me to find the one thing that helped me to return to my life nearly as if it were before Meniere’s found me. After many attempts at treatments, October 2008, grommets were implanted in my eardrums and I felt better than I have in longer than I can remember. I am moving in the right direction now and I hope that all those with Meniere’s can do the same.

I chose this name for my blog (well, it was one of my brainstorms that Colette really liked and we went with it) because anyone who has or knows someone who has Meniere’s Disease knows intimately well that your world is like a spinning top.

I wrote a poem and an essay a couple years ago about my spinning world. When attending amusement parks, carnivals and fairs I always wanted to get on the rides that would spin. I loved the carousel and the TN Twister. If it spun I would ride it. I would be caught quite often, in spare moments, spinning around in my office chair at work. My favorite holiday game is Dreidels. I always liked to watch them spin around. Then one fateful day in the autumn of 2004 I started to spin.

Seeing the world spinning around when you are not on an amusement park ride nor intoxicated can be quite scary. Making things worse is the hearing loss and constant tinnitus that all but drives you mad. You sit and wonder what you have done wrong or could have done differently to prevent this monster from invading your life. Then there are the moments that you contemplate doing as van Gogh and cutting off the offensive anatomy realizing that you will no longer have ears to hold up your glasses and you let the feeling pass.

What are your thoughts and feelings? How do you cope? What is it that keeps you from going utterly and completely mad?