Meniere's– "As The World Spins"

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.