Meniere's– "As The World Spins"

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.

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.