Saturday, December 10, 2016

"Listen to ME now!"

The title of this post comes from a line in one of the Spider-Man movies. Doctor Octavius is attempting to get his mechanical arms to do what he wants, not them having a mind of their own.

I do the same thing sometimes.

No, I don't have 4 mechanical arms run amuck that are controlling me that need to be reigned in. What I have is a balance system that leaves me stumbling and bumbling around like a drunken sailor.

There are days where avoiding a corner, any corner, of a wall or hallway is a major accomplishment. Getting from point A to point B in the shortest possible distance is nowhere near a straight line, but rather a winding trip through points C through Z along the way.

It can be frustrating.

People often talk about forgetting where they park in the parking lot and wander around until they find their car. I always know where the car is. Getting there may be the challenge.

It's similar to the style of auto racing known as "drifting". You never go around the corner facing the direction that you intend to end up going. Instead you slide around the corner with your back end trying to pass your front end.  I can be looking squarely at something and walk sideways attempting to get there.

It could actually be rather humorous to watch.

Dark is always a problem in this regard. I couldn't walk a straight line if I wanted to. I dread the day when I get stopped for a traffic violation and am expected to take, and pass, a field sobriety test, especially at night.

"Stand with one foot in front of the other, heel to toe. Now, close your eyes and touch your nose."

Thud.

"Ok, now walk on the white line on the side of the road."

1,2, cha cha cha

"Let's try this one. Stand on one leg with your eyes closed."

Here comes Peter Cottontail, hopping down the bunny trail.........

Can anyone say, "enjoy the ride to the station?"

It could be enough for me to scream "Listen to ME now!" to my balance system.

In that regard, I actually have done that. While in some of my drifting moments I have actually stopped, re-aligned myself to my target and shouted, "We're going THIS way now!"

One of the joys of living in the country. Who is going to hear you?

'til next time

Dennis

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

Monday, November 14, 2016

Pew!

It's been a while.

Both for a post from me and for a "real" attack. Hopefully my posts don't stink, but the vertigo still does.

Honestly, I could argue that is had been almost 3 years since I had a legitimate Meniere's related attack.

Notice I said had been?

The last full-blown attack I can completely attribute to Meniere's occurred in January or February of 2014. Sadly, I also have Benign Paroxysmal Positional Vertigo (BPPV), the one that involves the crystals in the ear becoming dislocated and causing vertigo based on movement. Yeah, I should really consider playing the lottery. There may be an argument to be made that most of my issues since 2014 have been related more to the BPPV than Meniere's. There is a difference, both in how the vertigo appears and its intensity. With BPPV you do not experience the headache and exhaustion following the vertigo, at least I don't. The thing with BPPV is it has to be caused by movement. Meniere's, not so much.

As someone who lives with a chronic condition, you become aware of how things feel. You notice little symptoms before they become big ones. For some time now, I have been noticing my right ear is fuller. more pressure. It enters your mind, but you hope it isn't the start of something. With this, you never know, and for almost three years, the pressure has built and fallen without any significance.

That ended today.

Well, really, I wonder if it ended yesterday.

Saturday night, my siblings and I took my parents out for an early anniversary supper. I am pretty careful about my diet, but you get lax. I should have asked for my meal to be prepared low sodium, but I didn't. I have no idea what the content was. I also had 1 glass of wine, which for me is beyond rare. I don't like wine, I don't drink more than 1 drink every other month, on average. But this wine was pretty good, and it wasn't a big glass either. Sunday we stopped at my parents house to visit with a couple of my siblings before they headed back home and I needed to relieve myself. I walked into the door frame. It most definitely was not a good balance day, but that was the worst of it. I was tired early, but otherwise it was a decent day.

I slept like a rock, but was ready to go this morning. As I was driving my kids to school, out of nowhere, the road flipped-----twice. When I say flipped, I mean instead of it below me, it was above. At least that is what my brain thought. I began to pull off the road in case more was coming, but all that came was the headache. Major headache. 6 hours later I still had it, and I had taken something for it.

So, instead of a productive day, I got to nap for almost 2 hours this morning and then go through some errands with the typical Meniere's hangover.

Meniere's still stinks. I hope this post doesn't.

'til next time

Dennis

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

Thursday, October 27, 2016

This Right Here is Why I No Longer Farm!

***Please watch the video. It explains the point of my blog***

It's interesting when and where teaching moments take place sometimes. Last Thursday I had the opportunity to fly to Dallas for a three day training session for a concern I volunteer with. My flight was at 7 am. Living an hour and a half away, and using the guide of needing to be at the airport 90 minutes before domestic flights, that meant I needed to be up at 2 am to make my flight.

Rough, but doable.

I was at my gate by 5:15.

I don't know why the first flights of the morning were running behind, but we didn't actually leave the ground until close to 8 am. From my recent experience of flying, I knew that it would be best to not have my eyes open during take-off and landing. I knew it, but I didn't follow through. The sunrise was so pretty. Until he banked, that is. I went from looking at the horizon to looking at the ground instantly-then the sky, then looking for the barf bag. I didn't need it, but I sure wanted to know where it was. The flight was uneventful-the best kind- but the landing was the same issue. Why must I look out the window or even have my eyes open?

Once on the ground, I stumbled my way to the shuttle and nearly fell into a support post. I even had my travel companions asking if I was OK.

At least it was a teaching moment.

Day one ran until 7 pm and I was exhausted. I was in bed by 7:45. If it weren't for me scanning the TV, I probably would have been sleeping by 8.

Then Friday morning hit. Or was it a bus? Nothing like a hangover without booze. A few of my friends kept looking at me during breakfast. Yeah, I feel like garbage. Thanks for asking.

As the day wore on, I began to feel better, and apparently it was noticeable. One good friend came up to me and said, "You must be feeling better. This was really educational for me to see what it is like when you are not doing so well, even though you probably didn't enjoy it."

Another teaching moment.

But none of those are what made me exclaim inside, "This right here, this is the reason I no longer farm."

That came on Saturday. And it didn't even happen to me.

There was another guy there who has Meniere's disease. Saturday morning, during breakfast, he cleared the table. But he wasn't an employee doing bus duty. He was eating, seated. In his words, "It was like my whole world tilted 90 degrees forward. The table just fell away from me. I even said, "Hey, what's going on", then it was like someone shoved me from behind."

He cleared the table and rolled on to the laps of two of the people seated next to him.

As the morning went on, it became the talk of the event. And a huge teaching moment. Several came up to me and asked if I had those types of attacks.

That would be a yes. Several.

They would gaze at both of us in disbelief that we had to live with the fear of drop attacks. Teachable moment indeed.

One of the gentlemen that this person landed on was a travel companion back home. It affected him so deeply that he was still asking and talking about it when we were in the home airport. Disbelief was the general thought.

The interesting thing about the person who had the drop attack is that it was his first in 2 and 1/2 years. Completely out of the blue. No warning sign at all. Boom! On the floor and a short time later, fine.

All I keep telling people is that disease has no guidelines. No plan it follows. It does what it wants, when it wants.

If it had been me and I was farming and was working around machinery being run by tractor power take off, I wouldn't be here to write this blog. It's that simple.

And THAT'S why I no longer farm.

'til next time

Dennis

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

Thursday, October 13, 2016

A visit with my ENT

This last August I needed to refill my prescription for my diuretic. Since I have been rather calm on the vertigo front, I sent a message to my ENT asking if it was time to consider dropping this from my treatment. The reply I got back said I should stay on the diuretic, but it probably would be a good idea to check in with my Dr. to touch base with how things were.

Today was that appointment.

Here is a highly paraphrased dialogue of my visit:

(knock on door)

Doctor walks in and shakes my hand

"You scored very well on your last audiogram."
(Smiling from ear to ear)

me "Yes, I'm beyond thrilled."

Dr. "So, what's it like having two ears?"  (still smiling form ear to ear)

me "I don't like either one by themselves anymore, but together, I'm beyond thrilled. (chuckling)
       Congratulations on your being elected to president of the American Cochlear Implant Association(ACIA)!"

"Thank you. It's great to be part of an organization trying to raise awareness of cochlear implants. The executive director is a former Cochlear employee and she thrives on advocacy. She lives in Washington and knows how Washington works."

      "So, what going on with your Meniere's?"

"Well, I'm here basically to check in with you on how things are going and to get your opinion on stopping the meds."

"I really have no problem with people wanting to taper off the diuretic if it has been a quite a while since the last episode. If they come back, we know the med was helping and if you go back on it, it should knock them down pretty quick again. If they aren't causing you much trouble, it may just be worth it to stay on them. It's better than the risk of attacks coming back."

"I don't really have a problem with them, just checking.  I do have a couple questions, though. Is there anything that we can do about the tinnitus?"

"Well, no. Usually one of the treatments is cochlear implants, but you already have those."

"And I am grateful because if I had to listen to nothing but the ringing all day I probably would be on anti-depressants. It drives me mad some days. My right ear is just howling today."

"Does it interfere with your sleep? I know when you take off the processors, it could be a challenge. There are some things you could try, but it means another pill. Usually they are the type of things that dull the nerves. I'll put a note in my notes so your primary care Dr. can see it. Then you can discuss it with them. They may have reasons to monitor things with you. They will also help you sleep, but I can't say it will definitely help the tinnitus."

"The other issue I have is that you preserved the hearing, but all I hear is high pitched squeaks and I actually hear better in noise if I plug my right ear. Any suggestions?"

"I would consider a custom molded ear plug. They (audiologist) can either attach it like they would the acoustic component on your processor, but only solid, or just a custom molded earplug, so it is comfortable. There is no harm in wearing one. No worse than if it were a hearing aid."
He starts chuckling, "It's bad that your residual hearing actually makes you hear worse."

"It's better than my residual hearing being all the hearing I have."

(Both laugh)

"It seems like it has been much longer than 3 years than I have had the implants. It is such a life changing experience. I have become a volunteer for Cochlear. It's great to be able to help others."

"The biggest challenge we have is getting past the decision to have the implant. People are afraid of the surgery. They are afraid it won't work."

"If they can't be helped by hearing aids, how much worse can they get if it doesn't work? It has been so much of a life altering thing for me."

"You know that. We know that in the clinic. It is just a challenge to convince others. I'm glad you are actively involved in advocating for people."
                              "It was nice seeing you again."

We again shook hands, and I was off.

We will see if I attempt to taper off the diuretic. I'm not sure the risk is worth it. If I keep having sleep issues, I may consider the other med. If it reduces the dreaded tinnitus as well, BONUS.

It's just great that I have been relatively event free. I'll take it, because even as he said, there isn't really any way to know they are gone until they are gone. And I really don't want the vertigo back.

'til next time

Dennis

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

Tuesday, October 4, 2016

Three years and it keeps improving

I realize that I spend a good deal of time talking about the fact that I have cochlear implants. The reason I do is not to convince anyone that they must get implants for their hearing loss, it's more a way to show people what  the outcome can be if they do choose this route.

I am fully aware of the controversy that is sometimes surrounding the idea of Cochlear implants. On one hand there are those who see it as a threat to their culture and, not only an unwanted "fix" to a problem they don't see themselves having, but also an unneeded intervention in the lives of people who are deaf.

On the other hand, there countless numbers of people who are not part of this culture. These are likely people who were not born hard of hearing or deaf, but lost it later in life. Many of these people have a steep learning curve and high levels of stress over the loss of one of their senses. They see the loss of their hearing as a loss of their culture, much in the same way as those born deaf see hearing restoration as a loss of theirs.

It's actually rather sad that there needs to be such a division between the two extremes. I don't fault anyone for not being interested in a technology to allow them to hear. I wish all would feel the same towards those like myself who are willing to use it as a way to cope with the loss of their hearing.

But that isn't really what this post is about.

It's about my personal experience with the implants.

If you have not read my entire story, here it is, in a nutshell.

I was born hearing. I grew up hearing. Perfect hearing. When I was 27, I developed Meniere's disease and by the time I was 29, I was deaf, stone deaf, in my left ear and I lived with one ear for 18 years. One deaf, one perfectly normal. Although I developed Meniere's in my right ear at around 40 it didn't permanently affect my hearing until I was 47. Then that ear crashed.

I was stuck. I couldn't hear and I didn't know any sign language. Communication was pen and paper or text message or email. That was it.

When the idea of Cochlear implants was tossed out, I looked at it as a risk/reward scenario. There wasn't much downside risk. You could only get so deaf. Yet the upside reward potential was seemingly unlimited. Sure, there was the risk it wouldn't work, but does that make me worse off than doing nothing?

So I went for it. And never looked back.

My activation day for ear one was shocking. Before turning it on, I heard zero, nothing, nada, from my left ear. After turning it on I got 56% of the words correct.

All with the push of a button.

That was 3 years ago for my left ear. September 26, 2013.

I was just in for a tune up programming session and with some adjustments to my settings, I have reached all time high scores since implant.

My left ear alone now stands at 62% of the words and 74% of the sentences, the hard lists. My audiologist says this is what they expect to see form an implant.

My right ear alone is 74% of the words and 91% of the sentences. Same hard words and sentences, but different lists so you can't cheat.

Both ears together I'm at 78% of the words and 95% of the sentences.

I don't publish these as a "look at me" effort, but more to show people what is possible. I may be achieving greater than expected results, but it happens. You don't get averages without outliers. But if you want to be honest about what implants are likely to do, hearing 75% of what you are now missing is far better than missing 100%.

If you are ready and willing to accept being deaf, that's fine with me. But if the thought of living without so much of what you know as normal is frightening, there are alternatives.

They work. And I'm proof.

'til next time

Dennis

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

Friday, September 16, 2016

Why does it matter that there is a thing called Balance Awareness Week?

I'm a bit tardy on this week's meaning and importance, but really, for me, there is no such thing as one week out of the year that balance awareness matters.

It's a challenge to explain to others that do not have compromised balance systems what it is like to live without normal balance function. They see me walk. They see me drive. I'm not incapacitated because of my loss of vestibular function.

What they don't see is the frequent struggles I have in everyday life because they don't live with me. They only see me when I am doing well.

I used to enjoy playing a little basketball. I was never on any type of organized team, but I liked to join a pick up game in my early years. Now I have kids and the elementary school has a basketball program. At the end of the season they have a parent/child game. I can't play. I've tried, but all it takes is to spin around a couple times and I'm looking for something to grab onto. That part of life is gone.

I used to play softball. That's gone too.

Riding bike used to be one of my favorite childhood activities. It has been years since I have been on a two wheeled bike. The last time I was, I was shocked I could keep it upright. My balance has officially (testing proven) gotten worse since then.

If my bicycle is gone, so is the thought of ever riding motorcycle again.

And these are just the optional things in life. They aren't necessary, but enjoyable.

People should see me trying to walk in the dark. Or should I say stumble and grope in the dark. Don't put me in a room with no widows and turn out the lights unless you want to hear a crash and thud because chances are pretty good I'm tipping over.

Walking in snow is fun. As is uneven ground. More stumble and grab.

I've gotten so I don't really like to drive at night on bumpy roads. The headlights dance, or is it my eyes? Forget long times on a tractor or other equipment without a suspension system.

There is one benefit. When your kids see you on the riding lawn mower and you get off and vomit and get back on to finish, they step up quickly to mow for you.

When we had upright silos on the farm, I would climb them for giggles pre- Meniere's. Now I get the chills watching someone stand on a cliff on TV. Climbing on roofs will be something I doubt I will ever do again. Ladders are enough of a challenge.

To be quite honest, it stinks.

So, if you know someone with impaired balance function, take what's left of this week to support a program that helps people cope with the loss. VEDA is a good example. You can visit their website at vestibular.org and make a donation, or find a way to volunteer.

Because balance matters more than one week in September.

'Til next time

Dennis

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

Wednesday, August 24, 2016

When Motavational Quotes and Speakers Aren't

fantasyhelp.com



"Winners never quit, and quitters never win"

Who hasn't seen that quote. I understand the reasoning behind it. When you are facing adversity, keep going. But is that really good advice?

I recently had a friend put out this quote "97% of the people who quit too soon now work for the 3% who didn't".

This struck a nerve with me. Since when is the ultimate goal of anyone to never step back and see if what they are doing is even the thing they should be doing? Is that "quitting too soon"?

With the recently completed Olympics, we got to celebrate athletes and their abilities for 16 days. It would be interesting to know how many of these athletes have changed the event or specialty they compete in over their careers. Did they "quit too soon"? What if the shot put throwers really wanted to be and worked at being swimmers? Or Gymnasts really desired to be pole vaulters? Did they quit too soon on their dreams?

The reason I post this should be obvious. Not everyone will be successful at whatever they find a passion for, but learning something completely unfamiliar may bring huge success. In the case of athletes, how many hundreds of thousands participate in high school athletics? Reduce that to how many thousands in college and even fewer professionally.

If only they all would not have "quit too soon"!

In the case of people with a chronic illness, their health dictates what they will do. Some will do much, some less. And yet it is important to determine what "less" really is. Is it really less?

My wife works in long term care. There is a debate about quality of life that surfaces from time to time in the care of the elderly. One argument is that when mom or grandma is no longer able to enjoy her life, their life has no value. I find that to be incredibly short sighted. Perhaps their value is in teaching the caregivers and family humility and respect for the elderly. Or patience. Or empathy.

Is that of less value than being out in the world pushing and striving to get ahead?

I've never heard a motivational speaker or seen a motivational quote that says "If you want to get ahead, you need to step back". Maybe they should.

People need to stop what they are doing when what they are doing is getting them nowhere. I believe a familiar quote goes something like this, "Insanity is doing the same thing over and over again expecting different results".

Sounds like sometimes quitting too soon is the right thing to do.

If you are a fan of the motivational gurus of today, good for you. Personally, I find their talk pointless drivel. We really all find our drive from within. It is a long life if you have to be constantly pushed and prodded to keep going. At times, yes. Constantly, yikes!

The point of this whole post is that if you are pushing and succeeding, good for you! If you are struggling right now, maybe your purpose is to step back, look at the real purpose in your life, and be as humble and patient and kind as you can to those you depend on. Your purpose might be to benefit them.

And maybe, just maybe, by "quitting too soon" and redirecting your efforts, you will end up being the 1% that advises the 3% that employs the 96% on how to be a better human being rather than just a successful one.

'Til next time

Dennis

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

Thursday, August 18, 2016

I know it caused it, and I can't prove it!

vimeo.com

Anyone who has experienced Crisis of Tumarken, aka drop attacks, knows they are likely the most dangerous part of the complex condition of Meniere's disease. I've seen too many photos of broken arms, smashed and bleeding faces, and stories of concussions because of them. I'm also very thankful that my experiences with them have scared the bejeepers out of me and those who have witnessed them, yet have left me virtually unharmed. One minute you are upright, the next you are picking yourself off the ground. Always aware of what happened, yet completely clueless as to what happened.

My history with these started early on with the disease. And often. It usually involved me falling to the right when I first started getting them. Usually I was standing...............on concrete. My poor right shoulder bore the brunt of the blow. Yet I was fortunate to not have any immediate injuries that required medical intervention.

That was in the 1990's.

As time has worn on, I started having bursitis in that shoulder. I would get a deep tissue massage and it would go away for a while. Perhaps I would get bursitis and massage 3 times a year. Then 6. Then massage started getting expensive, and bursitis got more frequent.

Ice and heat. Heat and Ice. Repeatedly.

I really can't tell you how long I have been dealing with this chronic, returning bursitis, but it has been at a minimum 5 years.

I tried stretches. As I mentioned, I used ice and heat and massage. I tried chiropractic. This allowed me to function.

In the last six months the pain kept building and the range of motion kept shrinking. The strength was going away as well. It finally got to the point that trying to change a lightbulb cause burning pain down my arm.

As much as I didn't want to, it was time to check it out. Time for a trip to an orthopedist. They sent me to physical therapy. 3 weeks of that made it hurt worse and my range of motion didn't improve much. We tried a cortisone shot in the shoulder to lessen the pain to allow me to work past the pain points. It never touched it.

After some discussions, we felt the best option was for a scope of the shoulder to fix whatever they found. It is a bit unnerving to go into a surgical procedure with everything from a simple cleanup to rotator cuff repair up to, but not including a shoulder replacement on the table.

That was done 2 weeks ago, and if I were to guess what would be done on the way in to surgery, I would have guessed rotator cuff. I would have been wrong. Instead, I got the best possible outcome, a general cleanup of the shoulder and having them break through a fair amount of scar tissue while I was asleep. No major damage at all.

Now I have to endure more physical therapy, but it at least doesn't hurt near as bad and my range of motion is returning quickly.

Was it the drop attacks and falling on my shoulder so many times starting so many years ago? There is no way to know for sure. All I can do is speculate and use circumstantial evidence: I fell on my right shoulder. I had recurring bursitis in my right shoulder. My right shoulder had a substantial amount of scar tissue and inflammation.

But I can't prove it.

'Til next time

Dennis

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

Tuesday, August 2, 2016

A Weekend With a Menerian



Having just returned from a weekend wedding for my God daughter, I thought it would be a good idea to share what a weekend (or any 2 days, for that matter) might be like with Meniere's disease.

Friday morning was spent getting packed and ready to go on a 5 to 6 hour drive for the wedding. Yeah, it was a hike. Thankfully my daughter needed some hours for her drivers license. That got me off the hook for driving.

We left home around 1 pm and because of a detour to see the college campus my oldest will be attending, we arrived at our hotel around 8:30 pm. Then it was off to a pre-wedding gathering until 11. I admit I enjoyed a beer. Singular. And I ate the food they had prepared. And it was a late night, getting to bed around 11:30 pm.

Saturday morning I woke up later than usual, but it was a Saturday, and I was on a mini vacation. Who cares what time I got up! After eating the free breakfast, which consisted of 1 waffle and 1 cup of decaf coffee, I returned to my room. Was that fun. It was time to greet the walls. The longer I sat in my room, the worse I felt. Lovely. I just traveled a long way to have a "hello walls" kind of day. The longer I sat, the less I was convinced my breakfast would stay down, or I would stay up. Finally I gave in and crashed in bed. Did I mention that this was my God-daughter's wedding day? And that I had traveled a long distance for it? Yeah, nice. Real nice.

I managed to stay up for 1 1/2 hours before crashing in a Meniere's induced heavy sleep, for 4 hours.

When I did wake up, there was 2 hours before the wedding. The normal headache and exhaustion still was there. It took me 45 minutes to get the energy to shower. I did feel a bit better following, but I wasn't convinced I would make an attempt to go to the wedding at all.

Being one to keep pushing, I went. And to the reception. And the dance.

As the night wore on, I did start to feel better and better. As the dance started, I was sitting right on the edge of the dance floor. The music wasn't loud. The lights weren't bad until............that blasted green one. I have no idea why green bothered. I am assuming I am Superman and the green light was Kryptonite! It was brutal and I removed myself to the back of the hall, then outside, where the brides mother (and very dear friend) asked how I was doing. That is one couple with great empathy for people. It's nice to have those kind of people in your life.

We retired early from the dance and wouldn't you know it, I sat there at 10:30 at night, wide awake and feeling the best I had all day.

The trip home was uneventful and I did all the driving. One particularly bumpy stretch was beginning to mess with my eyes, but we made it through it. For the first time traffic was a bit bothersome as well.

I highly doubt one beer is what did me in on the trip. I've had one before and always limit my intake. Perhaps it was the whole day being off from my usual.

I don't know, and I am not one to dwell on trying to figure it out. To me, that's the fastest way to insanity with this.

But at least I went, I survived, and made my God-daughter very glad I was there.

And Meniere's still sucks.

'Til next time

Dennis

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

Saturday, July 23, 2016

Hearing Loss is Hearing Loss is Hearing Loss, Right? Think Again!


hearingplus.in


  • About 20 percent of Americans, 48 million, report some degree of hearing loss.
  • At age 65, one out of three people has a hearing loss.
  • 60 percent of the people with hearing loss are either in the work force or in educational settings.
  • While people in the workplace with the mildest hearing losses show little or no drop in income compared to their normal hearing peers, as the hearing loss increases, so does the reduction in compensation.
  • About 2-3 of every 1,000 children are hard of hearing or deaf
  • Estimated that 30 school children per 1,000 have a hearing loss.

(http://hearingloss.org/content/basic-facts-about-hearing-loss)

Staggering statistics, if you really think about it. And here is another. According to the CDC in the US, 70% of young adults with hearing loss are employed. That means a 30% unemployment rate for young adults with a hearing loss. (http://www.cdc.gov/ncbddd/hearingloss/data.html)

But is all hearing loss the same? After all, if you can't hear, you can't hear, right? Wrong.
nationalhearingtest.org


Hearing loss is as different as the person with it. To start with, you have different degrees of hearing loss.

The picture above shows what a typical audiogram may look like for a person with hearing loss. The frequencies refer to the pitch. Low frequency, low pitch sounds. High frequency, high pitch sounds.

It also shows the different decibels of hearing loss. In this case, low tones are normal, but as the frequency increases, it falls through mild, to moderate, to severe. This person would not hear women's voices well. Higher pitches would be lost.

But that is only part of the story. It only shows the level of loss, not the kind of loss. Yes, there are different kinds of hearing loss.

Hearing loss comes in three flavors, if you will. They are conductive loss, sensorineural loss, and combined loss.

Conductive loss happens when there is an obstruction in the flow of sound to the inner ear (cochlea). The inner ear is where "hearing" takes place. (Really, it takes place in the brain, but that is another subject.) Some causes of conductive hearing loss include:
  • Fluid in the middle ear from colds
  • Ear infection (otitis media)
  • Allergies (serous otitis media)
  • Poor eustachian tube function
  • Perforated eardrum
  • Benign tumors
  • Impacted earwax (cerumen)
  • Infection in the ear canal (external otitis)
  • Swimmer's Ear (otitis ecxterna)
  • Presence of a foreign body
  • Absence or malformation of the outer ear, ear canal, or middle ear
Hearing aids would probably perform poorly, or not at all, in this type of hearing loss. Making things louder when they can't get into the cochlea is of no use. And chances are, the cochlea may be perfectly healthy.

What needs to happen is for the underlying cause to be fixed, in some of the cases, or for the sound to find another route to the cochlea. This can be done with bone conduction. Some examples are bone conducting headphones and bone anchored hearing aids, but it takes a healthy cochlea to work.

Notice what wasn't on the list of causes of conductive loss? Meniere's disease. That is because that type of hearing loss is the second type, sensorineural.

Sensorineural loss happens when the tiny hairs in the cochlea are damaged or broken. The sound gets to the cochlea, but how it interacts with the hairs is changed. Instead of it flowing across them at an even rate, some are bent or missing, and so are those pitches in hearing. That is why things sound off. The letter T sounds like the letter D, so Tom sounds like Dom, or Dumb. Or it is missing completely and sounds like OM. That is why comprehension of words and conversations become hard. Things sound different or aren't there. In the case of Meniere's, the low pitches go first, so all you may hear is TA instead of Tom. Setaces beco ipossa to udderstad. (Sentences become impossible to understand) See what's missing?

Sensorineural is typical hearing loss. It is the type that happens with aging, as shown in the picture, or noise exposure, or disease, such as Meniere's. The only difference is the slope. With Meniere's, the slope reverses from the picture and is called, surprisingly, reverse slope hearing loss.

This type of loss CAN be helped with hearing aids up to the point of severe or profound loss. After that, the sounds are amplified to such a degree that things are loud, very loud, and likely still not able to be understood. That is where advance solutions, such as cochlear implants come in.

The third type of hearing loss is a combination of conductive and sensorineural. It takes the best (or worst) of both and puts them together. Challenging, but not necessarily impossible to help.

I think it is wise to learn the types and degree of your loss before going out and spending endless money on things that will never help you hear. That only leads to frustration and aggravation.

If your current hearing specialist hasn't or doesn't help you understand these things, find a new one. It's your ears and your hearing. You deserve to have it explained to you in a way you understand and to be helped in a way that does more than line their wallets. Far too many hearing aid dispensers will put a hearing aid on anything to gain a sale. Their goal should be to help people they can actually help and send those they can't to someone who can.

'Til next time

Dennis

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

Friday, July 15, 2016

Finding the Passion Again

Warning! This post has nothing directly related to Meniere's disease!

Now that that is out of the way, I've been struggling. Not with the disease, that has been relatively silent (pun intended). What I've been struggling with is my purpose. My first love and passion was farming. That's gone for now, although I still have some land I could do something with.

What I find myself struggling with is what do I find as a second passion? Of course, I am back in school for accounting. I enjoy it, both school and what I have done with accounting, such as taxes and a bit of consulting. But it isn't my overall passion. Don't get me wrong, I am good at school. I will be very good as an accountant. It just isn't what drives me to go on to bigger and better things.

Nothing does anymore.

I've dabbled in other things. They're fun, but not something I could see myself immersed in for the next 15 to 20 years.

I feel lost.

Drifting around waiting for something to slap me upside my head and say "hey, this is it! Let's get busy!"

It's a real challenge.

I've always been a worker. I guess you could say I'm a blue collar kind of guy.  No, more of an enigma.

You see, while I loved the hard, physically draining work, it was never mentally challenging enough to satisfy me. Yet when I now find myself in the classroom giving my brain a workout, at least in some classes, I find myself longing for the days of yore when I could proudly say to myself that I could outwork men half my age, and usually did.

I just mentioned to my wife this evening that while I farmed, I always felt more comfortable talking to doctors, lawyers, professors, etc. than I did to other farmers.

Yet that is where my heart is at- farming.

So that is the dilemma I find myself in.

Do I find a way to go back into some type of farming? I have enough land that I could do small scale, direct market type ventures. Fresh produce, chickens, eggs, maybe expand on the small ruminants I have. Will I find my passion in that? Or is that relegated to the status of hobby, hopefully profitable. I am not wild on the whole farmers market scene. It seems like a whole lot of work for the amount of sales generated. Maybe it is used more for making a direct connection to long term markets than it is to make a living carting produce and products from town to town. From the successful people I know in this type of venture, it takes years to build a clientele.

Or do I put all my efforts into the accounting aspect of life. As I said, I will be a very good accountant. Can I be good enough and respected enough to gain back my passion? Many I have talked with at the college have told me that bachelors degree accountants have people looking for them rather than them looking for work. And that is only projected to grow-rapidly.

I've always believed that if you have passion for what you do, you will never work a "job". I have never had a job, and I certainly don't want to start now.

'Til Next Time

Dennis

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

Sunday, July 10, 2016

Memories, Truths, and a Mini Rant

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This morning I was greeted by this "memory" shared by my wife from Facebook from July 10th, 2013.

"We have finished testing and consult for Dennis. Plan is to do cochlear implant in the left ear. Just have to wait for insurance approval before we can schedule. This will restore some hearing. We still have to deal with having episodes related to the right ear."

This brought out some of my memories of the last three years and things that are still as true today as they were then, and even back when first diagnosed in 1992.

  • I did nothing to "get" this disease. It's a disease, not a result of some activity I did or did not participate in. This makes blaming ourselves a pointless waste of time and energy.
  • There is no known cause.  The name implies that for true Meniere's disease. Idiopathic Endolymphatic Hydrops- Idiopathic means no known cause. Those who claim they know the cause do not. And if they do know a cause, then you do not have true Meniere's disease.
  • There is no known cure. Again, those who claim a cure do not have one, and if you are "cured" you likely did not have true Meniere's disease. Stopping your symptoms is NOT a cure.
  • Hearing loss is likely.
  • Along the same lines, I did nothing to cause my hearing loss. Quit blaming me! In my case, quite the opposite was true. At the first sign of hearing loss, I did everything possible to prevent it. I used ear plugs, hearing protection, avoided (as best I could) situations where loud, prolonged exposure would happen.
  • Hearing aids may not help. Accept the fact that my hearing is bad. Endlessly telling me to "get a hearing aid" is only going to aggravate me. I know my hearing history and test results. Unless you are a licensed AuD, keep you opinions to yourself.
  • Despite my very best efforts, I may still have vertigo attacks. That is the very nature of the disease. It comes, it goes. The length of time for each will vary from person to person and from time of year to time of year. It will also vary from one point with the disease to another. That is the difficult part. You have no idea if, when, or how long you are going to have any aspect of the disease.
  • Everyone deals with things differently. Don't tell me so-and-so was or wasn't able to do certain things. That's them. This is me. I may be stronger than some. I may be weaker. Comparing me with others won't make me feel better or worse, just tired of hearing about them and tired of you.
  • There ARE things that will help control symptoms. Some more easily for some than others. Ultimately, a completely destructive treatment should control my symptoms. If not, it is likely I was misdiagnosed. No one WANTS to have the destructive treatments, but sometimes they are necessary. No one wants to be left deaf or without any balance function, but that is what destructive treatments do. Don't condemn me for delaying them as long as possible, and don't condemn me for using them. If I, in consult with medical professionals, decide it is the best way to control life altering attacks, it is my choice. I know the possible outcomes. I'm willing to take that risk because it is better than living the way I am.
Three years ago I was ready to jump right to the destructive on my right ear as I had good results from it 18 years prior with my left. It would have been far better than what I was living with in July 2013. I even told my ENT that. I remember telling him "if given a choice between being deaf and feeling good, or hearing and feeling like crap, I would choose deaf in an instant."

He proceeded to give me a Cochlear implant and work on treating my right ear.

Thankfully, I have had great results from the implant and the treatment-so far.

'Til next time

Dennis

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

Friday, June 17, 2016

I guess I'm in it for the long haul

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My last blog mentioned that it has been three years since this last round of the fight with Meniere's began. Part of the counter-attack that my ENT used was a diurectic. Specifically, he put me on Diazide, or the generic name, Triamterene, at a 37.5 mg daily dose. The reason for the use of this particular diuretic is that it preserves potassium while helping to eliminate sodium and therefore, fluid, from a persons body.

The importance of preserving K is that if you deplete the body of it, you get muscle cramps. That would not be an acceptable thing.

I am not complaining about taking it. I have handled it well with no major side effects. It does stink to not be able to take being in the sun like I was used to. I burn easier. The funny thing is, even though I read the literature on the drug, it didn't click with me for a while that this was the reason I got sun burnt easier. It is a small issue and one that can be helped by sunscreen and lotion. Now if I could get in the habit of actually using them.

These types of medications are primarily used for high blood pressure, which makes it interesting for me. I've never had high blood pressure. I always run low. Even before taking this med, I typically ran 100/60. After I had started on them, I had a routine physical with a Nurse practitioner. As she was reading through my chart she got a bit upset and asked "who put you on this med? You don't need it!"

Naturally, I needed to do a bit of education as to the use and I gave her the name of the ENT at my clinic if she felt the need to follow up. After explaining what the purpose was, she calmed down. I don't think she appreciated being out of the loop.

The point of this rambling is that it has been three years of continuous use. I thought it might be worth asking the question if my ENT's plan was for me to stay on it for the rest of my life, or if they had other thoughts. Again, I'm not opposed, I just thought it would be a good idea to check. I haven't seen my ENT in person since my second Cochlear implant surgery in April of 2015 and we didn't discuss my Meniere's. The last real time we discussed that may have been June of 2014.

Last week I sent them a note and asked what the plan was.

A couple of days ago, I got a phone call from a team member saying that it was the intent for me to remain on them at the level I am at for the foreseeable future. She laid out the reasons behind it and it sounded a bit like "since you have not had any major issues, why risk it?" She then suggested that sometime in the next year, maybe I should just schedule a follow up to talk about how things are, or aren't, going.

So, that's where I'm at.

I guess I am on them for the long haul.

I'm not really upset about it, nor am I overly thrilled.

I think I may agree with the ENT team, and if something seems to be making some kind of difference, why risk changing it up?

I certainly wish I could get by without, but I definitely can do without a return to the days of endless hours of vertigo and vomiting.

'Til next time

Dennis

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

Thursday, June 9, 2016

Time flies when you're having whatever it is that I'm having

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June of 2013.

Prior to this time my life and health had been pretty good, considering. Sure I had some vertigo attacks. Sure I was deaf in my left ear. Other than that, life was good.

It really started earlier in 2013 than June. Sometime in early 2013, my hearing in my right ear went south, then came back, then went south, etc. I had more bad hearing times than good, but I could handle it. It wasn't overly pleasant, but it could be much worse.

I knew the beast had flared back up, but I also knew that, typically, by the time I make an appointment, get to the appointment, and see the Dr. there was a very good chance that it would once again calm down. That's what Meniere's disease does. It waxes and wanes. Combine that with the fact that I'm a man, and I toughed it out. 20 years experience with it will teach you a lot about tolerance.

Then came June. The hearing really hadn't come back. I knew that was part of life with this. I'd been through it with my left ear. What really is the point of seeing a Dr. when they can't stop it anyway. I hadn't had any vertigo, it was just my hearing..............until.

It doesn't take long to remember that falling without warning on concrete hurts. A LOT.  I've written about that drop attack in some of my other blogs and how it could have been a much worse outcome than dislocated ribs and a really bad circular bruise on my back.

What I wasn't aware of was how much my life would be changed because of the chain of events that followed. That attack was the start of the worst 8 month's I've endured with Meniere's disease. I went from a self assured, middle aged guy, to a broken shell of the man I used to be. The fight that was so necessary to work the career I had been doing since 1984 was nowhere to be seen. The ultimate depth that one could reach was where I bottomed out-asking to die rather than endure another attack.

Medical doctors, Pastoral counseling, professional talk therapy, Chiropractic, and the ever present barrage of people willing to tell you that they had the answer to my illness. These were the things I dealt with in addition to the fact that this bloody disease can be relentless.

In reality, it was all training for my future. I just didn't see it at the time.

The things that snapped me out of this downward spiral were time, friends, faith, and allowing myself to admit that I couldn't fight this alone anymore. In reality, being a man is admitting to yourself you need help, not bearing the world on your shoulders. That doesn't mean I'm the poster boy for social butterflies, it just means I know my limits.

I've written at length about the benefits and blessings that have come since June 2013. In all honesty, none of them would have come my direction had I not had that drop attack. No cochlear implants. No hearing again. No relationship with a ridiculously talented ENT, or the staff of the clinic where I am monitored in my hearing journey. No friends from around the world due to my hearing loss. No new found friends and acquaintances made while back in college. No praise heaped on me from unexpected sources. No sign of a new career. Even this blog would not exist.

Does that mean I'm glad 2013 happened? Not on your life. I miss my old life. I miss my old career. I probably always will. Most days I long to go back.

It just means that in the last 3 years I've been knocked down, way down, worked my way up again, and am seeing that perhaps this was the direction my life was meant to take at this point. It doesn't make it better, or worse, just different.

I think I get the meaning of the quote I'm going to paraphrase. At my oldest daughter's graduation, the Superintendent of schools used it in his talk to the graduating class. "It's Ok to have an end to the journey, but in the end, it's the journey that matters."

To that end, this three years has been quite the journey. Not all of it enjoyable, but all of it has been important in my overall life's journey. I'm not sure where the end is, but, with all my effort, I'm going to attempt to enjoy the journey.

'Til next time

Dennis

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

Wednesday, May 25, 2016

Inadvertently terminal illness


sciencekids.co.nz


Meniere's disease isn't fatal, terminal, or remotely deadly.

Or is it?

While the truth of the matter is that having this illness is not directly terminal, the aspects of the disease certainly make it dangerous, which means that it may contribute to untimely death.

In visiting with my parents recently, they mentioned a conversation they had with a random couple on a sidewalk in a small town. This couple began talking about a man who had recently passed away.

I don't know the man. Never heard of him, specifically, but I know the family name. The family is involved in the excavation business. Big excavation. They operate the large track hoe and bulldozer type of equipment. The business has been in existence for several years, possibly generations. Heavy equipment is part of the job.

The story goes something like this.

This man who passed had been suffering from vertigo for the last several years. The cause of the vertigo, I do not know. It really doesn't matter. Vertigo is vertigo. These bouts of vertigo caused numerous falls and injuries.

That's understandable. Vertigo will do that.

Combine that with the above mentioned heavy equipment and it brings things to a different light.

I, again, do not know the nature of the falls. Whether he fell into heavy equipment, or off from the equipment, I do not know. It again doesn't really matter. What matters is the fact that there was large equipment around increases the likelihood of serious injury.

It seems, according to the story, that he recently suffered yet another vertigo attack. The result was major trauma to the head and death.

He was 68.

The nature of the fatal fall isn't important. The fact that it happened is.

And while it is absolutely possible that simply falling in your own home could result in your death, the issue of having large equipment around only increases that chance, slight as it may be.

I'm not sure if this one fall was the cause or if it was a cumulative effect, similar to athletes succumbing to repeated concussions. The point remains the same. Falls and head trauma can kill.

While I would jump at the chance to re-enter my former career, it becomes a risk/reward scenario. I worked around large equipment with spinning power take off shafts at over 540 RPM. I've seen what they do to stuffed scarecrow types in safety demonstrations. Having an attack at the wrong time around one of those would be instantly deadly.

I worked around large animals. While cows have been domesticated for a very long time, they are still animals. First instinct in their flight or fight mentality is flight. This means stampede. No, they won't be thundering herds racing across miles of open plain, but 100 cows weighing 1400 lbs each can do enough damage in a few hundred feet of racing to kill a person. Simply falling suddenly, under the perfect conditions, may be enough to trigger that type of response. Again, the outcome would likely be death.

That's a lot of risk for the reward of being my own boss. Healthy, it's a no brainer. With a balance dysfunction, it also is a no brainer.

I often joke to people, when I am doing a bit more than they are comfortable seeing me do, that I'm insured.

The truth is, that may be tempting fate.

Just ask the guy from the story. Oh, wait, you can't.

Point taken.

'Til next time-and stay safe

Dennis

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

Monday, May 9, 2016

Half way there



It's been a long haul.

Last fall I decided to go back to college to get (first) an associates degree in accounting. It's my way of fighting back against Meniere's disease. It may have taken my first love and career, but it's not taking my life.

This week concludes the first year of maybe 2 years in that process. I'm still hopeful that my life experience will be able to cut off some of the required coursework along the way, but if not, so be it.

I'll admit, I had some concerns going in to school after a long time out of the classroom. Not so much with my ability, but more with the general idea of being back in school at 50 years of age. Those have been dispelled. I can handle this, and, quite a relief, I have been nothing but encouraged by every person I have met while there. The professors have been great. I find an ease of talking to them I did not experience in my prior college life 32 years ago. Maybe it's because I'm older than most of them!

The classmates have been warm and accepting. I almost get the impression they appreciate the life experience I bring to the classes. I've found it easy to talk to many of them, despite our age differences. It's actually pretty cool.

The support staff at the college has been more than willing to get me any type of accommodation I need. In fact, the director of the disabilities services department has told me that if I ever run into a situation where I am not accommodated, I had better be in his office ASAP and it WOULD be fixed. Tech support has gone out of their way to find ways for me to use my assistive devices with my Cochlear implants. Any room, any time, I am to let them know and they will set it up for me to use. No questions asked.

To be honest, I could get by with just my processors in the vast majority of situations. My accessories are my "secret weapon" for my advantage.

Academically, I have done well. Ok, that is an understatement. I have thrived. Fall semester I attained a 4.0 GPA. I was invited to join Phi Theta Kappa, the oldest and most prestigious honor society for two year colleges. I have accepted. While the recognition is nice, the future benefits will be a good return on investment. If I decide to continue on for my bachelor of science, I get an automatic scholarship just for belonging to Phi Theta Kappa. There are more benefits beyond that.

While I write this, spring semester grades have not yet been posted, but as things stand, I will be very close to, if not actually achieving, a 4.0 GPA again. I've been blessed.

Along the way, the conversations I have had with staff and students have been equally important to the grades I have achieved.

They have given me the chance to educate about hearing loss. They have given me the chance to educate about Meniere's disease. They have given me the chance to be an advocate, and most surprising, an ear to others. For example, I have talked to at least two professors who also have hearing loss and feel the same stigma that I do. It seemed a relief for them that they were not alone in their hearing challenges. These have talked to me more about hearing loss than class content. I have talked to a tech support person who struggles with sudden hearing loss and trying to cope with hearing aids. The idea of Cochlear implants as a future option for him was a relief. This same man works with a fellow tech support person who has Meniere's. He understands where I am coming from and said they had even set up a "quiet room" for this employee to go if/when he has an attack at work. It's his personal recovery space that no one else uses.

All this has been done while attempting to maintain life at home and also working as a tax preparer from January through April. There were some late nights, and I felt them the next day. There were days where I felt the urge to just walk away. There have been days where I am not the most pleasant person to be around. There have been more than a few days where I felt that all I did was trade the stress of farming with Meniere's for the stress of school and work. But one thing that working 80 hours a week for 30+ years has taught me, you don't just walk away from the commitments you make, even if they are only with yourself. As the saying goes, "Get up, Dress up, Show up, and never give up."

Honestly, the biggest challenge to my ability to do this was the fear that I would not physically be able to handle it. I commute 35 minutes each way to school, 4 days a week. I have to sit in front of a computer screen for several hours a day. I know the way this disease works. It can hit you from out of nowhere. For this school year, it has left me alone. For that I'm more than thankful.

Overall, this has been a good, no really good experience. Here's to that continuing until I achieve my two year degree.............and beyond.

'Til next time

Dennis

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

Monday, May 2, 2016

I've let us all down

wanderlustworker.com

I'm sorry. I've failed us.

It seems I have gotten comfortable not being upfront with talking about Meniere's disease with people I have just met.

Here's what I mean.

I recently attended a birthday party for a good friend. The big 5-0. As I was sitting at the table, eating, this couple sits down by me. I had never met them before. He started talking about farming. Being  farmer (former farmer), I was able to carry on a good conversation with him about the ins and outs of farming.

After some other people came and went, he asked if I farmed. I replied that I did for 31 years, until I went deaf. He did a double take because I had been talking to him. I couldn't be deaf, could I?

But that is where I failed us all.

I stopped at deaf. Why?

Truth is, being deaf is not the main reason I "retired" from farming. The list was actually pretty long. The list had more reasons to stop on it than reasons to continue. Going deaf was just one of the things on the list.

It was actually Meniere's disease, although deaf is part of this, that tipped the scales to hang it up. All the other things on the list I could have overcome. It would not have been easy, but who cares. That's what builds character, facing challenges and rising up to meet them head on.

Meniere's was the one thing, and more specifically, the vertigo and drop attacks, that I could not deal with right then. That was the final straw that broke this camel's back.

So why do I default to "I'm deaf?"

It's easier.

It's easier to explain deaf. I can even demonstrate that. Take off my "ears", and voila! I'm deaf!

You can't explain this other stuff. You can't explain that you have random vertigo attacks. You can't explain what a crisis of Tumarken is. You can try, but you really can't. Granted, sometimes you get "lucky" and the person has had vertigo, mainly BPPV, but you still miss the mark with them. They understand a few seconds of the room spinning. Some say that is was the worst thing they ever experienced in their life. Then drop the "I get it for up to 4 hours" on them and watch the jaws drop and the stares become blank. In the real world, that just can't happen! Or so they think.

Or maybe you can get that across to them, but then drop the bombshell on them that I have. "When mowing my lawn, it is not uncommon for me to stop, get off the riding mower, vomit, get back on and finish." Well, there is no way that I could be that nauseated by simply mowing the lawn!

Or maybe try this one. "While driving tractor the last spring I farmed, I had to stop in the middle of the field for 20 minutes before I was able to drive to edge of the field to get out and lie down." Nope. That's an airplane story. It went right over their head.

So, I take the easy way out far more often than the truth: I gave up my first career due to the unpredictability of Meniere's disease, NOT being deaf.

And for my failure to say that more often, I'm sorry.

"Til next time

Dennis

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

Friday, April 22, 2016

The important things in life


www.etsy.com


Meniere's sucks. That is a well known fact. Just ask anyone with this illness. Yet it is important to keep it in perspective. It absolutely can destroy lives, but it isn't what life is, or should be about. This lesson was brought home recently.

I know that I have it relatively good with this disease. It's been 2 years since my last "major" attack. That may have some bearing on my current view of life. Life, for the most part, is pretty good. That still doesn't change the fact that you still need to keep Meniere's disease in its proper context. It sucks, but it could be so much worse.

This last week my daughter was involved in a car accident. Thankfully, she and the other two in the vehicle walked away. Truth be told, this was an accident that was three seat belts from being tragic. This was a rollover on a country road into a rock filled ditch. Almost certainly the three would have been ejected were it not for them wearing their seat belts.

Instead of three families planning funerals, we all get to hug our kids.

That's perspective.

Instead of losing our children, we can use it to teach life lessons. We can use it to sit back and realize how close this was to a horrifying end. The bruises will go away. The other alternative was to not have our children come back.

This is especially meaningful considering that this child will be spreading her wings in the near future and leaving the nest. We were so close to not seeing that next step in life. I can't imagine the anguish that parents go through when tragedy strikes their children. Even before they are born, parents dream of what their children will be, what dreams they will have.

To have that snapped away must be gut wrenching.

It also makes Meniere's seem a bit less important. It still sucks, but it isn't life.

Even if you have to vomit while doing it, go hug your loved ones. That is so much more important than caving to this disease. Thank them for being there, even if it isn't much, or they complain, or don't get what you are going through. Hug them anyway.

They could all be gone in a blink of an eye. And it's rather tough to hug memories.

'til next time

Dennis

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

Tuesday, April 5, 2016

Groupies



amazingpicturesall.blogspot.com





We all find ourselves part of groups. Some we choose, some we don't. For example, I have Meniere's disease, so do most of you that read my blog. We didn't choose to be part of this group, but here we are. At the same time, we chose to be part of the group that reads my ramblings. It takes an active commitment to do that.

I also am part of the world of people who are deaf. Notice the small d? This is a group that I did not choose to be part of, but here I am. The capital D group is a choice. And I'm not going there, figuratively or literally.

Then there is other social media groups. You have Facebook, Twitter, Instagram, Blogger. All choices. Yet within some of these groups are sub-groups you had no idea you were part of. In my case there is farmers, former farmers, (now) accountants, bookkeepers, etc.

I tend to be a bit more vocal in some of these groups. Just who I am, I guess. Others like to be in the background. You know, lurkers. That's fine as well.

One of the Facebook groups I am very active in is my brand of cochlear implants unofficial FB page called Cochlear Town USA.

Every now and then, a question pops up about our hearing loss and what caused it. It is interesting to see all the different reasons for hearing loss as well as the ages that people were diagnosed. We have people who had hearing aids before turning one year old all the way to never needing hearing aids until in their 70's. The more I read stories and do casual comparisons, it seems to become more clear that the longer one has had hearing loss, the likelihood of having immediate success with cochlear implants goes down. I see people who recently lost their hearing and receive the implants not miss a beat when they get switched on, and see people who have never heard well struggle for a time. We all get to good results over a period of time, it seems, but the longer a person is hard of hearing, the more work they need to put in.

In the case of Meniere's disease, I see more people have instant success than not. Typically this may be because we have only been deaf for a short time before implant. At least that is my opinion.

Along the way, as new people join the group, people share their hearing story and it is interesting to see how many have CI's because of Meniere's. Recently another one joined and has had the disease about as long as I have. They have also had CI's about as long. Fortunately for this person, they were able to use hearing aids for 10 years. My hearing crashed right through that stage in a few months.

An interesting comment made on this person's intro was from Menierian about how they never knew there was that many of us.

Yeah, there are more than we realize.

Part of reason that we don't "know" more is because it is such a isolating illness. Many people with many other chronic illnesses are able to go about their life in a relatively normal fashion. We go to bed. Well, not all the time, but you know what I mean. I have written before that my issues with Meniere's have been very intense, but very short lived, followed by periods of (I don't like this term) remission. During those active periods, I didn't go anywhere. Close to home, close to bed. It's hard to meet others when you are face down in bed praying the world will stop spinning. But other times, between active periods, I'm out and about. If I didn't talk about it, no one would be the wiser that I even had an illness.

That needs to change on a large scale. The only way to do that is for most ( I say most because I know some are not comfortable talking about their illness) to open up about it, but not in a "woe is me" kind of way.

For me, it may be easier to do because I have cochlear implants, which can be a conversation piece. I can't explain WHY I have them unless I tell people about Meniere's.

They go hand in hand.

It's kind of unique, I guess. My being part of 2 groups I did not choose to belong to have given me the opportunity to spread awareness about 2 groups that I did choose to belong to. Being deaf because of Meniere's allows me to talk about cochlear implants and another great organization, VEDA.

It's a natural fit. Peanut butter and jelly. Meniere's and deaf. Cochlear and VEDA. They just go together.

In the future I will tell more of what VEDA is all about and what it does for the world of vestibular disorders, but that will come.  If you have read any of my previous blogs, you now what Cochlear has done for me. Now I'm a volunteer for both.

And those are groups I'm glad to be part of.

'til next time

Dennis

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

Sunday, March 27, 2016

"Hears" to you, Chad!

A while ago, I "met" the guy in this video. He was directed to me because we share a couple of things: Meniere's disease and deafness. His life was not what he expected and had loads of questions. I only hope I was able to answer them. Through the process, we have become very good friends, and I am thrilled to have played a part in the reason he is telling his story to the world.

Here is my friend, Chad, telling what it means to him to have found a way back into life because of a way back to hearing:

'til next time

Dennis

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

Sunday, March 6, 2016

I'm Offended!

I really should have known better. I've been down the path before, but yet I willingly strolled into the mix, partly trying to gather an understanding of the issue.

In the end, I just ended up offending someone for some reason.

It seems, in this day and age, it is an easy thing to do. Everyone seems to be offended by everything. Wrong politics? I'm offended. Wrong religion? I'm offended. Wrong language? Skin color? Career? I'm offended.

I don't get it. Really.

I don't get offended, myself. Angry? Yes. Confused? Yes. Frustrated? Yes.

Offended? No, because, in my opinion, to be offended you have to take the offending person as an expert in the situation and that they are personally attacking you for being uninformed. Sorry, but unless you are truly an expert and can back up your claims with evidence, you are just shooting off your mouth. Move along please.

But there I was, trying to interject my thoughts on a couple of different situations, not condemnation, yet I was the offender? Have we become so sensitive that everything not in 100% agreement with our views is "offensive?" And yet, the quest for "knowledge" is at an all time high? How do you gain knowledge unless you ask questions, or view things from a different angle? But more often than not, knowledge appears only to be useful if it agrees with the person you are talking to. Beyond that, it is offensive. I may go so far to say that those who profess this greater desire to have knowledge are actually the easiest to be offended.

The event that prompted my relegation to the role of offender was a discussion concerning Deaf vs deaf vs hearing.

I should know better. I shouldn't even get involved in the discussion at all. But it has some meaning for me. As a person who is deaf, am I to consider myself Deaf? Hearing? deaf? Nothing?

I don't really fit in the hearing world anymore. After all I am deaf. Even though I use Cochlear implants and am what some have called "high functioning" with them, I am still deaf. If they fail, I'm deaf. When I take them off, I'm deaf. In all aspects of the hearing world, I am not hearing, and yet I am not Deaf.

The difference between deaf and Deaf may be a greater divide than hearing and deaf. Deaf is a culture. deaf is a condition. I can't hear, therefore I am deaf, but I was not raised without being able to hear, which is the culture of being Deaf. It is a different identity. A different perspective. And one that I can't wrap my head around, or for that matter, embrace.

I have tried, but I just don't understand it. I doubt I ever will. As a culture, Deaf seems to be one that is struggling with it's own identity as well. Sign language is good, unless it's not. Speaking is NOT good, unless it is. Hearing is good, unless it's not. Hearing aids are OK, maybe, but cochlear implants cross the line. Or maybe they don't. It all depends, but they may or may not accept you for it. And as a culture, you won't know until you have offended someone. Then you will know. Trust me.

It's for that reason that I will never be able to accept being part of Deaf culture. I'm deaf- a condition, not a culture.

Maybe my perspective would change if I was raised as a Deaf person. Then again, maybe I have reached the point in my life where I've fought my battles and where I am is where I am. I have little need to prove myself to anyone anymore. And I have little need to be offended for not fitting into a narrow description coined by others. Take me for what I am or move on, but don't expect to drag me into petty disagreements over verbiage.

Life is too short to be so easily offended.

'Til next time

Dennis

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

Saturday, February 20, 2016

The more we know, the less we know

Pic courtesy of nickmilton.com















It is the age old discussion surrounding Meniere's disease. What causes it? As I enter the second half of my 23rd year with this disease, we seem no closer to that answer than we were when first diagnosed.

There seems to be 4 main ideas that keep coming to the surface as to the "cause" of Meniere's disease: auto-immune disorder, genetic, virus, or inflammation.

While each one has some merit, I honestly don't believe any one single thing can be ruled as the ultimate cause. I honestly see too many contradictory things in each of them to be the absolute cause for all of it. This has been my belief since the very beginning. There is a reason that nearly every reputable source of information states "there is no known cause, there is no known cure."

I have spent a fair amount of time researching the possible links. Every time I think there may be one, I try to apply it to my life and come up empty.

There has been no shortage of others in my life that have tried to connect the dots. Both welcome and unwelcome.

One of the methods I have chosen to attempt to deal with the symptoms is Chiropractic. I'm a realist. No cure means no cure. I never had any false hopes of it "curing" me over the years. Provide some benefit? Yes.

I certainly can tell when my neck is "out" and a trip to him does relieve the pressure. Anything that promotes health is a good thing.

Recently I had an appointment and the regular Dr. was not in, but his partner was. It had been a long time since I had him give an adjustment. He was in a fairly talkative mood and the talk came around to my having Meniere's disease. He asked if I had researched the disease, I said yes. Then he said that his best feeling about the whole issue is that it is either viral or fungal in nature. The other thoughts, to him, just don't add up.

He mentioned that he has seen some pretty nasty things happen because of fungal infections in the human body. It would explain, to him, why just the inner ear was attacked.

Then he said that even if that is the case, the fact remains that there is no cure. He basically said "guess what? You have something nasty that you are stuck with." Again, no cure.

The nature of viral and fungal infections plays into this conclusion. It is a very rare case where a virus lives forever. Typically they come, do their damage, and die off. What you are left with is the consequences of having it. In my case, Meniere's disease.

I certainly didn't go in thinking that there would be a cure, and my regular Chiropractor has stated as much as well. It is sometimes a bit refreshing to hear things from a different perspective.  I have always tended to lean towards an autoimmune issue in the cause of this disease. For some reason the body decides to attack itself, in this case, the inner ear. The thought of an outside force, such as viral has bounced around, but the problem I have with that is there are millions of people exposed to the same viruses, why are so few affected in the same way? Viruses are generally not selective in who they attack. The difference comes from the individuals response to the virus. There needs to be an underlying reason that only 1 in 10,000 end up with Meniere's disease when certainly all 10,000 must get exposed at some point. Is that the genetic component? Not actually having the Meniere's gene, but having some flaw in our immune system to fend off the virus that causes it?

Unfortunately, the answer may not be found in my lifetime. Then again, it may.

In the meantime, the debate will continue, and the leading candidate for its root cause will shift as the newest research discovers new potential links.

And those of us with the illness will still be left with more questions than answers.


'Til next time

Dennis

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

Monday, February 1, 2016

The complicated life of a Menierian

wallhint.com





Life is interesting. More so when you have a chronic illness.

I 'm not one to sit back and feel sorry for myself, so I push the limits every day. I did that for 22 years farming full time while having Meniere's disease. When the time came for me to hang that up, I had no idea what my future would be. On a whim, and with the intention of getting my wife back in college to finish her registered nursing program, we visited the local community college. Somehow I decided to embark on the journey to getting a college degree in accounting. My first step is an associates degree.

*A little disclaimer: I have never been academically challenged in my life, so this is more "jumping through the hoops" than it is a stretch of my learning ability.*

As  I have embarked on his venture, the encouragement from others has been wonderful. It is good to know that people genuinely think this is a good thing for me. Along the way I have had many ask what my ultimate goal of getting the degree is. Several have encouraged me to go all the way to getting my CPA license. While the thought of that is intriguing, I am also a realist. This requires a bachelors degree, 150 total credits, and a 2000 hour apprenticeship under a licensed CPA in order to become licensed. It also means that I would have to sit for a 4 part test and, of course, pass it.

The question was asked of me this morning what I would do with a CPA license and for how long.

That is a very good question.

I'm not the kind of person who cares how many letters I have after my name (trust me, I've run across more than one with a masters degree that left me scratching my head how they got it). I am just the type of guy who can't do nothing for the rest of my life.

Would the CPA be a benefit for me? What would my employment options be? (I have been told by college officials that most students need to look for work after graduation, accounting grads have people looking for them) How do I address the issues of my illness in regard to a new career?

This morning I was reminded why these questions matter.

I woke up with a hangover. While some would claim this to be the sign of a good weekend, I have consumed no alcohol for a month. It was a Meniere's hangover. The kind that, if I were still farming, would likely have put me in bed after doing the 3 hours of morning chores, assuming I didn't vomit in the process.

All the same questions that I dealt with in deciding that I could no longer handle the physical aspect of farming came back into my head. If I am an accountant, how do I do my job lying on the floor? Or not coming in to work at all? Even more basic than that, how do I get to the office? What would my employer think? Clients? Co-workers? Would they trust me enough to hire me? Support me? Work with me on these occasions?

Believe it or not, accounting CAN be stressful. Do I need that in my life?

Everyone with this illness knows what kind of insidious bastard it can be. Months can go by with no issues and then hit you one day and knock you back to the core of your being.

These are the questions that everyone with a chronic illness have to answer for themselves each and every time an opportunity presents itself. What I have learned is that my health MUST take precedence over all else in my life. If I'm not me, how can I be anything to anyone else?

In the meantime, I will be continuing on my journey to my associates degree. We'll see what life has in store once I reach that goal.

'Til next time

Dennis

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

Sunday, January 24, 2016

Today I was in a "No Spin" Zone




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Spin.

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

Dennis

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