A Change.org Petition for Musicians U2 to Bring Awareness of Meniere’s Disease

Image via http://www.keepcalm-o-matic.co.uk/p/we-need-your-help-please/


As many of you know, I have an inner ear disorder that forced me to stop working and eventually have to go on disability because the specialists do not have the tools to help me.

I am, sadly, far from alone in living and dealing with a disability and doctors being unable to help me get better and go back to leading a productive life.

To say that funding and research for inner ear disorders are woefully lacking is an understatement. As those with vestibular disorders know, the public does not realize how many people of all ages are afflicted with inner ear disorders.

I also believe that it will take the involvement of A+++ famous people to help bring a much greater awareness and understanding about vestibular diseases. This, in turn, would bring about more funding and research. One has only to think about the effect of Jerry Lewis and the Muscular Dystrophy Telethon that so many of us watched. Or Michael J. Fox and Parkinson’s disease. Or Christopher Reeve and spinal cord injury.

While we don’t know why Lewis became involved with MDA, with Fox and Reeve it was personal. Fox has Parkinson’s and Reeve became paralyzed with a spinal cord injury as the result of being thrown from his horse at an equestrian event. The funding and research that has been made possible due to their involvement and activism is immeasurable.

There is a petition on Change.org right now (March 9, 2015) that is asking U2 to help bring awareness to Meniere’s disease. This is the request from the petition:

We are respectfully asking you Bono and your U2 band mates to consider helping us to raise awareness about this debilitating disorder with a simple statement before you sing your song “Vertigo” during your 2015 concert tour. A simple:

 “We need to find a cure ‘now’ for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s Disease.” would work wonders for us.

I hope you will take a few moments of your time to check out the petition, add your name and share this petition so that we can hopefully get A+++ famous people involved and help bring awareness to vestibular disorders.

I hope that one day we can talk about how people are being helped by the results of increased funding, research and discoveries. I also hope and look forward to the day that we can talk about how little people’s “quality of life” has been affected and how immeasurable the help of A+++ famous people has been.

Thank you.


What’s I’ve Been Doing Lately

Not that much, as it turns out. The changes in weather this spring and summer have me feeling worse. Hot and humid… cool and rainy… warm and sunny… sometimes all three happen in the same week.  Even had a few vertigo attacks, mostly when I was taking a walk. Freaky scary as vertigo is something that only rarely happens to me. Usually it’s disequilibrium.

I also started my fall cleaning/reorganizing early. Or maybe I’ve started my spring cleaning a bit late. Anyway, I’ve got a bag of clothes to give away and I’ll be looking through my books to see what I can give away. I’ve also been getting into those areas where I don’t get to that often and I’m finding that the dust bunnies have gathered to mock my cleaning plans, have fabulous dinner parties and reproduce, well, like bunnies.

Although they’re not this bad. Really. But still something that’s bothering my allergies which, in turn, bothers my ears.

And for fun and excitement tonight, I rolled a bunch of loose change. Because my life is filled with exciting things like rolling coins. I do this every couple of years and take it to the bank. I’ve got a nice little sum. All I have to do now is decide whether to put it all in the bank or keep some out and treat myself. I always have a running list of things I’d like to get and can get off the internet. But, sometimes it’s great to go to some stores I haven’t been to in a long time and do some shopping. Which is what I’ve decided to do as I was typing this paragraph.

I’m going through my pile of magazines, finally finished a book on Kindle and have started a hardcover. I want to read more of the books that I keep saying I’ll read. Looking at my shelf there is probably about 10 I need to give away, some still waiting to be read.

I started drawing this week by doing a bit of a doodling journal. Basic chronic illness stuff, what’s happening and what I’m doing about it.

And, before I forget, I’m now on Google+ as of today. It’s still in beta but if you want to try it, let me know and I’ll send you the link that got me to the sign-up page as I don’t know if the invite would work. (The one person I thought would try it while it’s still in Beta, I sent him an invite. He said he’s not sure if he wants to try it yet.)  Google has a profile name policy that they are following right now. When you set your profile up, you will be using your first and last name.  This is what they have at the bottom of the page:

We understand that your identity on Google+ is important to you, and our Name Policy may not be for everyone at this time.

I’d like to set up a separate profile using my blog name as I know a lot of people who blog don’t use their names or only a first name. Most of the people I know, don’t know I have a blog. I kept it that way if I want to vent about them or things that are happening.  Even though I know there are the circles (groups of different people where they only see what you want them to see), I’d still like a separate profile to use with the blog and not have to worry about an oopsie. I’ll see what happens when they open it up to the public.

So, that’s been my “summer vacation”. Fall, my favourite time of the year, is starting to creep up on us. A lot of us have gone through a tough patch lately. Hopefully, the new season will find us feeling better.

The ABCs of Disability – The Letter “S”

This Just In…

Having a chronic illness sucks!  With an “s”.

Having a chronic illness that is invisible really Sucks!

With a “bleeping” big, capital “S”.

I know I’m not saying anything that is earth-shattering.  But there are times when it needs to be said, even if it’s to ourselves.  Even when we’re having a good day.

Having an invisible, chronic illness is like living with a child who has temper tantrums.  Some days the child is really acting up, some days just lying low and a few precious days where everything is all right with the world.

For me, my main problem is vertigo. At 37 years of age I had to start learning to live with, and tolerate, the whims dictated by my inner problem child.   I don’t know when it will strike.  I can do very little to prevent it.

I feel like I’m in a strange, strange limbo.  I read other blogs where people have Meniere’s Disease and I am not on the same level as some of them.  I don’t get the vertigo so bad that I have to lay down for hours or days while throwing up.  My mother had Meniere’s Disease and she would suddenly yell to get the bucket because she would get dizzy and start to throw up.  She started leaving plastic bags in the glove compartment in case she would throw up.  Unless I’m feeling really drained, unbalanced or I’m sick, I can walk the couple of blocks to run an errand.

Yet, it’s bad enough that I can no longer work.  I have to keep my head looking forward as much as possible when I walk (which I now have to do at a slower pace) or sit.  I have to keep my head in my hand a lot of times to keep it still while I sit at my desk and lie down off and on during the day so I don’t get too tired or unbalanced.  I get most of my things online or get one of the people I live with to get me something.  I feel myself become unbalanced when the weather changes.  The weather!  Something else I can’t control.

For me, that’s one of the biggest problems which leads to some of the biggest fears that I’m learning to face.  I, like that temperamental child,  am out of control.   I can’t control my ears, can’t control my balance, have to plan to try to do things on certain days or, plan to try to not do too much if I know I have to go to an appointment.   Even though I try, many days I’m just not successful.   Can’t control this, can’t control that.  Can’t control my life.

Yoda was wrong when he said “Do or do not… there is no try”.   Some days, trying is the best we can do.