In February 2007, I was at home watching the Law & Order: SVU episode where they were looking for a person who was involved in a virtual reality world called “Another Universe”.  This gave me an idea.  I found that Another Universe is fictitious, however there is another virtual reality world that was alive and well called Second Life (later in 2007 Second Life (SL) would be depicted on CSI).  I had my laptop at work and created an avatar and entered the world.  Due to not having internet at home at the time and issues with my laptop I did not make it off Orientation Island.  I put SL aside and went on with my life.  In the midst of Meniere’s I dealt with the death of my father and a treatment that took away my immune system and left me fighting colds and infections.

October 2007 I watched the CSI episode involving SL and was reminded of my failed attempt at entering that world.  I couldn’t recall my avatar’s name and password.  So I created a new avatar and called her Parker Janick (Parky).  I made it into SL this time and began exploring.  I would spend my free time at work in SL (I worked nights at a television station and was all alone there)  During my exploration I was clicking things and not knowing what I was doing things would happen.  One time I clicked something and received a blue box and clicked yes.  I then went to change a tape and when I returned, my avatar was dancing.  I sat there and cried for about five minutes.  I could no longer dance in Real Life (RL), but I could dance in SL.

I continued to explore and ultimately got internet at home where I could explore more.  I made friends, learned how to swim and do many other things in SL.  I finally found my life again.  Along my journey I began meeting other people with chronic illness and issues.  There are those who are bed ridden and others who are in wheelchairs.  I have even met three others in SL who have Meniere’s Disease.  It helped at one point when I begin attending a support group in SL for people with chronic illnesses and/or their caretakers.  One thing was certain, we all came into SL for the same reason, to do things that we could no longer do in RL.

I can’t do much in RL that I used to do, but in SL I am thriving.  I own a Celtic Pub where everyone is welcome (as long as they obey the rules) and I host twice a week at a friends jazz and blues club.  I am involved with writing groups and even attend a Writer’s Circle once a week where I read some of my own work.  I recently submitted a poem for a contest in SL and won first place.  I even wrote a short story called The Damsel And The Dragon about why I am in SL and it was published in a SL magazine.

I highly recommend SL to those with Meniere’s Disease or any chronic illness that keeps you from doing the things you love to do.  You can do those things again by using an avatar in SL.  Use this link http://secondlife.com/.  to find your life again, even if it is virtual.  I would still much rather be dancing, hiking and swimming in RL, but for now I will do these things in SL and keep my mind active while meeting new people from around the world and making friends (gaining contacts) in the process.  Don’t let your illness deprive you of your life.

A shot I staged to go with my short story The Damsel And The Dragon

Me dancing with some friends at my pub

The beginning of September 2008, I set an appointment with my neuro-otologist to have grommets inserted into both of my ears for the purpose of using the Minette Device.  The device would cost me $3500 out of pocket.  At the time this wasn’t a real major issue as I had some money in the bank and could cover it.  However, two weeks after setting the appointment, I was told that ten of the twelve employees at work (including me) would be losing their jobs as of October 31, 2008.  I was devastated and and contemplated not having the procedure.  Friends I discussed this with urged me to go forward with it and if I ran into financial difficulty due to all of it, they would be there for me.

I have always been taught that if you treat others with respect and in a dignified manner then it will be returned to you.  In other words, “You reap what you sow”.I have always done my best to treat others respectfully.  Even those who have done me ill I treat at least cordially.  After all we are all human beings and must get on together to survive on this planet.

Friday, I went for my three month check-up with my Otologist.  He came in with his nurse and nurse practitioner and asked how I was doing.  After a bit of banter I told him that I am still looking for a one-way ticket to Iraq.  a little more banter and he realized I wasn’t joking when I asked him to schedule my autopsy I have been requesting.  He preformed the exam and then I stood there and proceeded to throw a bit of a tantrum.

I know what you are thinking, but put away your visions of a two-year-old pitching a fit.  I don’t scream, yell or stamp my feet (I’d fall down if I tried).  In fact, the worst I have done in recent history was call the workers at Hardee’s a bunch of plebeians.  I went on to say, through a veil of tears, that I am angry, bitter and just plain unhappy.  The trio only watched, listened and tried to answer my questions.  My doctor felt this long over due as well as educational for his green nurse practitioner.

This past weekend I updated my computerized Medial Alert Card (ICE).  While I did this I was prompted to add my Living Will and pulled it up as well as a form to complete my Last Will and Testament.  I went back through the pages of my life as I completed these forms.  I remembered the promises of others along with the promises I made to myself.  It seems all those promises were empty.  I would like to think that those who made those promises to me made them in good conscience.  However, from here, looking back they are empty and without the prospect of ever being filled.

I had dreams for my life.  I wanted to be a wife, mother and ultimately a grandmother.  It was my deepest desire to pass on to my children and grandchildren all I learned from my grandparents.  But in one god-forsaken diagnosis all my dreams were shattered and fell to the ground around my feet.  There is no shoulder for me to cry on.  No arm for me to hold to steady my balance.  I am angry that there is a disease that has no known cause, no known cure and not very much research being done to rectify this.  this leaves me unhappy and alone.  The loneliness has bred bitterness.  If only the promises had not been empty perhaps some dreams would not have shattered.

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

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.

Through the years my steadfastness on this topic has not wavered. Pet peeves have crept in which I file under “stupid people doing stupid stuff.” Now, however, I hesitate in giving a reply. To most my answer remains the same. To me it is far from the truth.  While forms of abuse still ruffle my feathers, and probably always will, there is now something else that feeds the raging monster of anger with in.

Vulnerability. Helplessness. Weakness. No matter what word is used, it still comes from within. When your body brings about a disease it has a way of throwing your life and manner of thinking into a tailspin not easily recovered.

My body started behaving in a way that it should not. No one could tell me why. When I received a call from a “substitute” nurse wrongly telling I had diabetes, I thought my world was ending. After losing my grandmother and a close friend to the disease this news hit me like a sledge hammer on a carpet tack.

In a manner, I wish diabetes had been the answer. However, several weeks later I listened intently with some relief as my doctor explained that in fact, I did not have diabetes. I am pre diabetic. This news only gave a short term air of solace. We were back at square one. If not diabetes, then what.

Seven months! It took seven months for the parade of doctors to diagnose me with Meniere’s Disease. This disease had been mentioned to me by one doctor two months before the diagnosis. At that time my research began. My findings were anything but reassuring.

Meniere’s disease has no known cause, no known cure. These words plunged deeper into my heart and soul then lead weights into the deepest sea. As a perfectionist, I like being in control of my actions and my body. This time is no different. No one can tell me why I have Meniere’s. No one can tell me how to eliminate it. Needless to say, I am not a happy person.

What makes me angry?  Having a disease that no one can explain makes me very angry. I cannot explain why. I just know I am angry though no one is to blame. Even though a few aspects of the disease were gradual, most were not. I feel as if my normalcy had been snuffed out like a candle.

What is my response to everything?  Isolation and self medication. It is easier to withdrawal and shut myself off from the world. I trust no one and cannot trust myself to be around others. Pondering these issues and others, I often cry myself to sleep. To prevent this, I take Benadryl or drink valerian tea to put myself to sleep. Weekends in isolation are worse. I have been known to spend them with alcohol to numb my body, mind and soul to prevent thoughts of Meniere’s from seeping in.

So, what is at the heart of the matter? I cannot trust and will not try till the anger goes away. The anger will not go away till there is a cure for Meniere’s Disease and that is improbable in my lifetime. Hence, a very vicious cycle.

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

The thoughts for this blog post have been forming for a while, then last night they were coming closer to the surface.  This morning I had a bit of a FaceBook e-mail exchange with another friend and helping to educate her about Meniere’s.  Again, as I was confidently typing my responses to her I couldn’t help but feel so utterly and completely helpless inside.  Sometimes I have to step back and look at myself.  I have the ability to display to the world the most confidence and surety while inside I am falling apart at the seams.  Where do the helpless go to get help and support?  What can we do to sure up the rupturing dams within?

There are some forums on-line and for some of the lucky there are local support groups you can attend in your area.  I have been part of these forums, but there are no local support groups to attend.  I have been approached several times to start one in this area.  However, giving how I feel and knowing it would be common, I believe it would be difficult as we don’t always feel like sitting in a room with others trying to be supportive and therefore we opt to just stay safe and comfortable on our couches and beds.  Sometimes we are supported by spouses, children, parents and others who are there or come over to help out.  I survive on my own.  I have been trying to be supportive of a few others with Meniere’s who need a shoulder and an ear (not that I have much left in the way of ears **insert chuckle here**).    I am glad that I can be here the best I can for anyone who needs me.  Just ask.  If I don’t have the answers I will try to find them or direct to the answers the best I can.

Let me go back to something I mentioned earlier.  Danny Pancy is a gentleman who has Meniere’s Disease.  He is also a photographer.  He put together a 20 minuted DVD to help others understand what we with Meniere’s go through.  The only audio is white noise since we have tinnitus in our ears 24/7.  Mr. Pancy has used his talents as a photographer and the wonderful technology available to distort photos to help display the way we view things.  I have shared this DVD with others so they can better understand.  It helps them feel a little less helpless.  Check out Mr. Pancy’s DVD on his website http://www.shutterfreaks.com/Pancy-Menieres/contact.htm.

For those who have Meniere’s we know there is really know way to feel less helpless when we are in bouts.  For others, those who know us and care about us, staying away is not the way to help us or you feel less helpless.  I know, too well, intimacy with loneliness.  This adds to my stress, but I keep going on knowing it will always be this way for me.  But I plead with others to reach out to those you know with Meniere’s and educate yourself, not for the purpose of trying to ‘fix’ them, but for the sheer purpose of trying to better understand.  Sites like http://www.menieres.org/ and http://www.vestibular.org/ are great sources to start with.  We just want to feel normal and feel like those who cared about us before the dragon invaded are still there for us and still care.  Don’t be afraid just because we can’t do the things we used to be able to do.  There are still other things we can do, like sitting and chatting about life and things in general.  If you treat us differently, especially by disappearing, then to you we become the disease.  Show us that we are still human beings worthy of your time and your friendship.  The helpless feelings may never totally disappear, but they can be diminished in all of us.

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 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.

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.