My name is Scott Booker, and at the age of 44 my life started spinning out of control. Literally! I was driving to work one day, when all of a sudden everything around me started spinning in my head, I got extremely dizzy and I felt like I was going to vomit and pass out. Somehow, I managed to get my car off to the side of the road without having a major accident. Once I got to the side of the road, I opened up the car door and threw up; my head still spinning. I had no idea what was happening.
It is now 8 months later and my life has changed drastically. Although it took a very long time (more details about that later), I was finally diagnosed with Ménière’s Disease.
Meniere’s disease is a disorder of the inner ear that causes episodes in which you feel as if you’re spinning (vertigo), and you have fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear.
That is the definition that Doctors give those of us suffering with this debilitating illness. The above definition does not even begin to explain what having Meniere’s is like.
So, I have started documenting everything about my journey with Meniere’s and I am putting it into a book so that others may benefit from my story.
One of the items not listed in the definition above, is that you are constantly dizzy. You often times stumble around, unable to get your bearings, find your footing, run into walls or even have drop attacks (which I will discuss more later as well). One thing that I strive to do is to maintain my sanity and sense of humor, so I like to call all of this “Having the Woozy Wobbles.”
So, the name of my book is going to be called “The Woozy Wobbles – My Journey With Ménière’s Disease. Sense I am still struggling to even function on a daily basis, this book may take awhile to get done, but my mind is made up and I am determined to never lose hope and to always keep fighting.
IMAGINE LIVING LIFE WITHOUT BALANCE.
Close your eyes and stand on one foot. It’s hard right? Now imagine having that same disoriented feeling on two feet, and with your eyes open. Balance is something most of us take for granted. It’s automatically hardwired into our bodies at birth, evolving and adapting as we grow and age. While basic balance is innate, some of us are able to perfect or even master our balance through exercise and practice. We don’t often think about our balance—until of course, we lose it.
While most people may not be familiar with the word “vestibular”—relating to your inner ear, brain, and sense of balance—many of us have likely experienced the awkward or sometimes scary feeling when we momentarily lose our balance. Maybe it’s taking a wrong step or getting motion sickness aboard a jostling boat. Or that nauseating head-spinning sensation after one too many alcoholic beverages. Eventually our balance comes back and life moves on.This is not the case for the over 69,000 Americans who suffer from the mostly invisible and frequently debilitating symptoms of chronic imbalance association with a vestibular disorder. Whether it comes on gradually over time or all of the sudden, bouts of dizziness, vertigo, and nausea can make many of life’s more routine tasks virtually intolerable. Just try getting a good night’s sleep with a high-pitched ringing in your ear. Or try to focus on something as everything around you appear to be spinning. For those living with a vestibular condition, everyday life becomes a progressively challenging obstacle course to navigate.
That is why VeDA pioneered Balance Awareness Week in 1997: to be an opportunity each year to come together and shine a light on these otherwise invisible balance disorders. If we’re all more aware, then we can better understand and be empathetic to those who need our support the most—our family, friends, co-workers, and neighbors. While many of these balance disorders are incurable, faster and more accurate diagnosis, along with effective coping strategies can greatly improve quality of life. Join us this September for Balance Awareness Week, and together we can pave the way toward restoring a life rebalanced.
By participating in Balance Awareness Week, you can increase awareness about vestibular disorders and funds to support patients in their journey back to balance.
For More Information: CLICK HERE
Have you “HEARD” about Sonic Cloud?
If you are hard of hearing or have deafness in your ears…then you might want to check out this video:
SONIC CLOUD VIDEO
For even more information…check out their website: www.soniccloud.com
It “sounds” almost too good to be true…but just might be the answer for a lot of us!!!
So…I wrote the above exactly one year ago today.
And although I have felt the curtains closing many times…I still fight to keep them open.
When I have good days…which are few and far between….I am really grateful for them. Unfortunately, on those good days…I try to make up for the bad ones and I end up having worse ones right after.
And on those bad days…giving up seems so much easier.
But I will continue to fight…I will continue to keep writing my life story…day by day!
So…update on my health and disability….
I have had multiple Streptomycin injections now…and although I do feel like I have a few good days here and there…my hearing is getting much worse (both sides now) and when I do have an attack…they are still BAD! Like…all day bad.
Still holding out hope for some miracle or another Streptomycin shot, which will be coming up soon. Will let you all know how it goes.
As for my disability…still working on it. I have been filling out paperwork, and more paperwork, and seeing their doctors (who cant understand WHY I don’t have my disability yet) and still sitting here waiting to find out what they are going to do.
So…my hope level isn’t high right now….but I am trying to stay as positive as possible.
And although I feel like I am losing my mind at times….there are bright sides to my days! Like my awesome Wife! My Loving Mother! My great Brother! Friends Old and New that are just amazing!! And…I know when I have to pee! And God Bless the inventory of toilet paper!
Until next time…Stay Spin Free!!
So….later today I am going to have the first of a few “Streptomycin” injections. This is an antibiotic that is used to treat a number of things…but one of them is Menieres. I am now going on 2 years of dealing with this illness and I have tried many different meds, therapies, surgeries, injections, etc….and nothing has seemed to help. My symptoms are still bad (if not worse) and now that I am completely bilateral (Menieres in both ears)…things are only looking more dim. So…after talking things over with my Oryntologist…who is the one Doctor that I have the most trust in…I have chosen to go this route.
What does that mean? Well…it means….that although it will hopefully help with my Menieres symtoms (Vertigo, dizziness, nausea,etc) I am probably going to go deaf.
The worst part…is that we don’t know if it will help…but they are hopeful. But the chance of my going deaf (in both ears) is about 90-100% – Now…I will probably be a good candidate for cochlear implants….but not sure if my insurance will cover it.
I think what scares me the most…is that I won’t be able to hear Rene’s voice and my Mom’s voice anymore. And I won’t be able to hear music anymore. That I will never hear Kelly Clarkson sing again! Or that…I will lose my hearing and nothing changes or improves.
I am scared. I am sitting here crying….scared to death. But I know that this is the best next option for me.
Thank you for letting me vent…and “lending me your ear”
Obviously…I will always try to keep my sense of humor…no matter what.
I am always having people tell people to “Think Positive” and to “Stay Positive” and that “Everything will be ok.”
I honestly and truly hate this. I mean…I know they are trying to help. And I appreciate the love and support that they are trying to give.
But sometimes…Being Positive and Thinking Positive….just….isn’t….possible.
And people don’t get that. And I understand. I have been on the other side. I have seen other people suffering and I want to do and say something to help. And I never really know what to say or do.
So…today…I have made the commitment to myself that if anyone tells me to THINK POSITIVE or to BE POSITIVE….
I am just going to think of the quote above! And then the person that is trying to support me is going to think I have gone mad since I will probably start chuckling…and then not be able to stop. And although I will try to stop…it will only get worse and then the laughing out loud will commence and I will look like a damn fool.
But I am good with that! I am positive that I am good with that!
So…I am going on 1 3/4 years with Menieres now….and one thing that I have quickly realized over the course of time is that all…AND I MEAN ALL…of my medications interact poorly with each other.
And it mainly is due to the fact that each one counteracts each others side effects.
For example…I take a medication that helps me with my nausea. This medication has a side effect of “headaches”. I take a medication for headaches that has a side effect of “nausea”
Now…both of these medications say possible side effects can be nausea and headaches. WTF??? You are giving me a medicine to relieve something that has a side effect that can induce the exact same problem??
And all of the medications tell me I shouldn’t drink alcohol with them. WHY THE HELL NOT? This freaking disease makes me look and act drunk….I might as well get to enjoy something from it??
Now….don’t be alarmed….I am not drinking 20 beers with my 10 Valium. Cause heaven knows….that would make me nauseated!