Sunday, January 24, 2016

Today I was in a "No Spin" Zone


If you live in the US, you better get used to hearing that for the net few months. Election cycles and politicians are all about spin. It's amazing to see how one set of figures can have 2 or three completely different conclusions, or spin, drawn from them. It leaves to wonder who is right and who is wrong. And if you aren't diligent about digging in to each claim, you may end up get swept away by the most passionate "spin" rather than the truth.

The same can be said for Meniere's disease.

This person experiences X, but I don't. I experience Y. Who is right? Who is wrong? The debate can rage on.

This morning, well lets back up for a minute, last night I was a crab. A depressed, stressed crab. I don't know why. I just was.  Nothing appeared to be of any benefit to me. I wanted to crawl in a hole and be left alone to wallow in self pity and mental self abuse.

Finally I went to bed.

When I woke this morning, I was greeted by two things I did not appreciate.  My left ear was so full of pressure it hurt, my right ear was howling so loud that even with my Cochlear implant processor on, I could barely stand the sound. 

But no spin.

Being a Sunday morning, I was off to church. Somewhere I left my brain behind.  Being the person who counts the offering, I have a briefcase for church. Guess where it was? Home. At least I had time to run home to get it, but the drive home and back I was in a fog. Thinking hurt.

The service began, but it was loud. Louder than usual. I made some adjustments to my processors, but it was still loud.

As the service progressed, I began to have a hard time seeing. The lights were so bright. I spent more time fighting them open than anything.

But no spin.

It got to the point that my eye sockets hurt. Stabbing pain.  I tried to read and the words made my eyes hurt. I just sat for the majority of the rest of the service with them closed. And it was still loud.

But no spin.

There came a time to stand, and not wanting to draw attention to myself, I stood, and was greeted by massive cold sweats.

But no spin.

I did manage to spend a little time after church for fellowship, but left early and came home and slept.

If this was a migraine, which I think it was, at least it didn't last long.  It did remind me of the headaches I would get following an attack. The PhD who interviewed me in 2013 determined that I got migraines, but they were induced by the attack, not vertigo induced by migraines. All I know was that it had all the makings of a full blown attack,

But no spin.

Now, if the rest of the campaign season would follow this lead.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Thursday, January 14, 2016

Happy Anniversary to me!

This week marks the first anniversary of this blog. Hard to believe that what started as a way for me to express what life has been like with Meniere's disease has turned into a blog that has been viewed nearly 20,000 times. I would have called anyone who told me this would happen a complete liar.

I had no idea if I would even be able to keep up a blog for a year. At times it has been a struggle to come up with ideas to write on, other times the words flow so effortlessly. Inspiration for a specific blog hits at very strange times. Lately they have hit me while driving, and sadly, because of this, many good ideas have been lost. I've dreamed ideas as well, but when I wake up, all that is left is the fact that I had a dream about an idea, not the idea itself.

Some weeks I have had to force myself to sit down and type. Others I have to force myself to get up.

Over all, it has been an experience that I have enjoyed, and I hope that you readers have enjoyed as well.  I know I have touched many with my stories, and I thank you for your kind words of praise and encouragement.

As I look back, my writing has changed, hopefully for the better. The content has changed as well. I never claimed to be an expert on Meniere's disease, but I spent some time explaining what it is and what it isn't. Yet I always tried to put in the posts what having this disease has meant to my life. I have always tried to keep it positive. There are plenty of places to go if you want to wallow in self pity and misery, my blog is not one of those places. I simply want to be a place of honest, realistic experiences.

I also have no financial stake in writing this. Never have, and I have no intentions to change this. Some have suggested I write a book. About what? All I have to offer is stories about living with the disease. I can't fathom squeezing a book out of it.  I also have no magical knowledge of things that will cure, slow down, or control Meniere's. For me, to write about such things would be hypocritical.

As I go forward with this venture, if this is indeed the thing to do, the posts will be more challenging to come up with. A person can only write about symptoms and direct effects so much. As a result my posts may become more broad strokes, rather than direct commentary.

They may also, at times, be a bit less frequent.  Perhaps my self-imposed blog a week goal was too aggressive.  I do know that the next few months will be extremely busy for me. I will do my best to keep up, but don't abandon me if my life gets in the way of my writing.

I also find it harder to write posts about an illness the longer I go without major problems. It's better to be able to live life than to wish you could be living your life. I certainly hope this trend continues.

In the meantime, if I do miss some posts, you can always look back at the archives, or if viewing this on my Facebook page, scroll down, to read, or re-read, my blogs. They aren't going anywhere.

And I Thank You 20,000 times over for being an inspiration for me to keep me going during this first year! If it weren't for the fact that people read them, I would have quit posting them long ago!

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Saturday, January 2, 2016

A rare sighting in nature

Meniere's disease is rare. There is no disputing this fact. It is estimated that somewhere between .05% and .1% of the population has it. That equates to 5 to 10 people for every 10,000. In my rural county of approximately 25,000 people there would be 20 to 25 people with Meniere's disease. The closest large city is around 130,000. There would be somewhere around 70 to 140 people with the disease. That's rare.

The likelihood of happening upon someone with the disease would seem nearly impossible. That is, unless you are one of the people who talks about it.

Tonight I attended a birthday party. Simple enough. But this party was for the grandchild of a close friend, a friend who knows I have the illness, and also a friend who has a brother with the illness. Little did I know that this brother would be there. In fact, I would have had no way of knowing that this gentleman was even in the area. He lives 6 hours away, but there we were, in the same place at the same time. It is about a rare chance meeting as one could imagine.

When the time presented, my friend introduced us and we had a very nice visit. We could share things that only someone else with the disease could understand: The endless hours of vertigo, the inability to move during an attack, the exhaustion, the hearing loss, etc.

And we did talk of those things. We also talked about the effect it has on a persons life. He related how he hated having to have a co-worker drive him home during an attack, not only because of the nausea riding in the car, but also because of the inconvenience of needing someone to do this.  He is an art instructor at a private college. having someone fill in, or cancelling class was a bother. He related how he had to give up two of his favorite pass times, singing in the church choir and basketball, because he was deaf in one ear and couldn't distinguish sounds from people on his deaf side.

He also mentioned the life lessons he was able to tell his students. As an art professor, he said it is important to teach about balance in art. Balance in color and balance in the image itself are so important. He relates to his class that they don't fully appreciate balance because they don't have to think about it like he does. They don't need to think about how they are going to get to the bathroom in the middle of the night in complete darkness, something he can't do without the help of a wall. For "normal" people balance just happens, it's not an effort.

He admitted that his on his journey, he has been spared a lot compared to others.  He is single sided Meniere's. His attacks were monthly, for 1 year, then gone. It has been about 12 years since his last attack. It completely destroyed his balance and hearing in that ear, but the other has had no hearing loss. He can get by.

Then we talked about our approach to life with Meniere's. He was fortunate, as am I, to have a great Dr. His was recommended to him, mine was a fortunate opening in the Dr's schedule, but we both share a common ideal around life with this disease: it won't kill us, but it may be debilitating at times. This conclusion came to me because of experience, his from a visit with his Dr. His Dr knew what his career was, and at one appointment, when he was struggling with what life would be like, the Dr told him to not consider that his life's work was over. The reason was that in the very next room was a police officer with Meniere's, or make that a former police officer, who was no longer to work because the stress of the job caused his attacks to ramp up. Instead of being a Cop, he was lying on the ground at the scene, having vertigo attacks. His career was over.  That same day, in room down the hall, was a college level competitive diver (think Olympic diving) who couldn't tell which direction was up once he hit the water, making it impossible for him to ever dive, or swim for that matter, again. His career was over.

And then the meeting was over. We shook hands and he left.

Kind of like the meeting of 2 rare animals in the wild, with little chance of another meeting like this occurring any time soon.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness