Friday, December 25, 2015

A winter to remember, but I would like to forget



A friend of mine recently posted this picture on Facebook. This was the wind chill temperatures (F) two short years ago.  I remember the winter well, only partly because of the temperatures.

It was a brutal winter. The cold came and never left.  Things don't work right at sub zero temperatures for several days in a row.  At the time I was still farming. That meant I was outside all day every day in this brutal cold.  On a farm the animals come first, regardless of the weather.

It was also the beginning of the end of my farming career.

In early 2013 the wonder of Meniere's disease made a return visit.  It had essentially been 18 years since it had been a significant part of my life. Yes, I had some attacks along the way, but maybe 2 or 3 per year.  Not much more of an inconvenience than having a cold or the flu.  I also had completely lost my hearing in my left ear. It really didn't bother me, I had one working ear.

That is until spring of 2013.

I had been diagnosed bilateral Meniere's in 2005 due to hearing loss in my right ear, but it was fluctuating.  I would go a few days, maybe a week, of poor hearing, then it would come back. Tinnitus was constant in both. Fullness varied with the hearing loss. But I lived with it and it didn't really have a negative effect on my life.

Sometime in the spring of 2013 my hearing headed south. WAY south.

And it didn't come back.  I was left with the joy of no hearing at all in my left ear, and the sound of the teacher in the Charlie Brown cartoons in my right.  MWAH MWAH MWAH was all I heard.

Given my experience with the disease, I did not immediately run to a Dr. The treatment had not changed much, to my knowledge, and I knew that this was the inevitable outcome from being bilateral.

I was prepared to live with. C'est la vie.

It is hard to get that point across to people.  This caused a fair amount of stress in my relationships. The calls to return to the Dr. came fast and furious. "Surely something can be done!"

It wasn't until the day the drop attacks came back that I sought help.  As I have stated many times, the vertigo is a pain, but I refuse to live with drop attacks.

I spent the summer being treated with dexamethasone injections and going through Cochlear implant evaluation and surgery.  All while trying to run a business.  While I did well with the former, the latter, not so much.

Then winter rolled in.

Cold.

Brutal.

Unrelenting.

While I had good success controlling the vertigo and drop attacks with the injections, and the Cochlear implant was working beyond my expectations, I had no idea what was about to happen the first week of January, 2014.

I have no idea what triggered the onslaught. I mentioned to the doctor that a friend had given us a ham for Christmas. Perhaps it was the salt load. Perhaps not, as it had never bothered before. But on January 2nd all heck broke loose. Attack number 1. All day in bed.

Did I mention it was minus ridiculous degrees?

Thank God my wife was off work and my  kids were on Christmas break yet.

January 3rd, 4th, and 5th were duplicate days of January 2nd.  In all respects. I would get to the farm, only to have to call for help and come home and spend the rest of the day in bed.

Still minus double digit temperatures as well.

That is tough to deal with when you are used to it. It was torture on my family.

January 6th came and I had a reprieve...............from the attacks.

January 7th was the last straw.  I remember the actual air temperature was -25F when I got up that morning as I headed to the farm. About 1 hour later the temperature had dropped to -27.

I was maybe half way through the morning milking when attack number 5 in 6 days hit. It didn't start all that violently. Things started spinning, no big deal. But they never quit. After 20 minutes I crawled, yes crawled, to the milk house and laid there for another 20 before I could stand up just long enough to call for help.

When my wife arrived, I was lying in a fetal position crying like a baby. She asked what I wanted to do and I said "DIE."

I think it took her yet another 15 to 20 minutes to get me into the car to go home.  We live about 1/4 mile from the farm. That drive home, a whole 1/4 mile, was enough to set off the vomiting. For the next 20 minutes I stood on my front yard, in -27F cold vomiting endlessly. My wife standing right beside me, not dressed for the cold.  When I finally made it to the house, I collapsed right inside the door. I have no idea how long I was there before I got up and went to bed, again, for the whole day.

The rest of 2014 I spent going through the motions. The events of January 2013 had finally caused me to break.  I did the work on the farm, but my heart certainly wasn't in it anymore.

And that is why the winter of 2013-2014 will be remembered by me. Not for what I endured, but for what it took from me.

'Til next time

Dennis

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

Saturday, December 19, 2015

My struggles are not your struggles






Picture credit: sarahkallies.com




Ok, I have a confession to make.  Sometimes I don't understand the challenges some people face with Meniere's disease. It isn't that I don't believe what some say, it's that the symptoms of this disease can vary so much from one person to another, that I haven't experienced the same things that others have.

My life with this disease has been an episodic adventure from the very first attack.  What I mean by this is that I get attacks. Violent, vomiting, whole day in bed attacks that leave me completely drained for a few days beyond the actual attack.

Then they go away.

The only thing I don't know is how long they will be gone. I have gone days, weeks, months, even up to a year, with no attack. It has nothing to do with anything I have tried. It may have nothing to do with anything the doctors have tried. It has nothing to do with any change in my environment. They simply go away.  Then without warning they come back, equally violent and equally disruptive.

This has been, and is, my history with this disease.  

And from all of the reading and talking with professionals, this is true Meniere's disease.

I know people get frustrated when they are hoping and looking for a cure, but lets be honest for a moment.  How can someone find a cure for something that comes and goes on it's own with no real known causes and no real evidence that anything fixes it?  I may try the same supplements as someone else and get no response, when the other person claims months of relief.  I may try a treatment that seems to offer some reduction in symptoms, but others are quick to chime in that it is bunk.

The only constant with Meniere's disease is the inconsistency.

And then people blame their doctor. That is beyond unfair.

At one of my appointments with my ENT he offered this analysis: "In every single documented case of Meniere's disease, there is a point at which the severity of the attacks are reduced and the hearing loss and the balance issues do not progress anymore [some call this burnout], but there is absolutely no way to know when that will happen, or the level of the severity of damage that will have occurred."

If even the Chair of the Otorhinolaryngology department at a world renowned medical center states this, how can the average sufferer have a clue as to its cause and cure?

All I can offer is what the disease has meant to me, done to me, and how it affects me at times.  Offering any more than that is a huge disservice to myself, and anyone else who has been diagnosed with this disease.

'Til next time

Dennis

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

Sunday, December 13, 2015

Living



The old saying goes something like this: "If you have health, you have everything."

There is so much going on in an average day today, it can be difficult to step back and take care of yourself first.  The "need" to be all things to all people just doesn't seem to work anymore. Careers, kids, family, and hobbies are all vying for our attention. At some point something has to give. Sadly, most often it is our health.




I realize that there are many whose afflictions are self-induced. There are also those of us who also have done nothing intentional to our bodies, yet we still have disease. That's called life. At times I sit and shake my head at some of the things that people propose to be the source and cure of all illness.  They all over look one important thing: none of these so-called remedies and lifestyles are going to ultimately make a difference. We are all going to die anyway. Yet the slick marketing and blatant accusations some make lead a person to believe otherwise. All it is going to take is the right diet and mental state and I will live forever. Not!

The best we can do is the best we can do when it comes to our health. Kind of depressing, huh? Well, not for me. I have found the simple acceptance of my life being what it is to be a huge stress relief.  Once a person accepts what they cannot control, everything else becomes more in focus.

I've seen it in my own life. Once I finally accepted that I have Meniere's disease, and that it isn't going away, the focus went from me to others.

I'm not claiming that my life has become a complete self-sacrificing experience. It hasn't. It has become one that is certainly more aware of my surroundings. I now recognize and empathise with the struggles of others.

This is a big thing, once it happens.  The fact that you are no longer living for yourself is actually a huge load off of ones shoulders.  No longer does one need to "keep up with the Joneses" or really try to prove themselves to anyone. That is a losing proposition anyway.

While I was growing up there was a radio program, maybe it still exists, called the Dr. Demento show. It was a show about silly little songs and spoofs of popular music. this is the show where "Weird Al Yankovic" got his start.  One of the songs that received a fair amount of playtime on Dr. Demento was called the GURU song. It was an obvious spoof of the beliefs of Gurus.  One of the lines in the song plays out like a high school cheer: "G....U...R...U, G...U...R...U, Gee, you are you!"

And that is the whole point, you are you. Even in the situation of having Meniere's disease, you are still you.  Your personality hasn't changed, your likes and dislikes haven't changed, they are simply on hold because of your disease. For better or for worse.

So in this manner, I guess I have to agree with the Dalai Lama, we spend too much of our life not living, and then when we no longer can live the life that we once could, we realize it is too late to go back.

That is my challenge for the rest of my life: to live, not merely exist. To take full advantage of every opportunity presented to me that I am able. To enjoy more, complain less. To help rather than be helped. In doing this, as best I can, I am sure I will find that I have been helped far more than if someone else did my living for me.

This is now my pledge, I am going to live, yes in spite of, yet also because of, Meniere's disease.

'Til next time

Dennis

Just a guy trying to live-no, LIVING with an invisible, potentially debilitating illness