Saturday, February 11, 2017

It's not about me



That's how it ended. An explanation of why I was standing before a group of 30 people on February 9th. It's not about me.

This is a post that has been 4 years in the making. Well, really, this may have been the whole plan from the time I first was diagnosed with Meniere's disease. 

I am a person that strongly believes that there is a plan for everyone's life. I really believe that the more you fight this plan, the harder your life will be. Don't get me wrong, I have had a great life. At the same time, I believe that trials and struggles in your life serve a greater purpose. The purpose may not be visible to you at the time, but it is there.

And the plans for your life may change over time. In reality, there are very few people that have a plan or goal for their life and that is the only plan they get to live out.

Life happens.

That doesn't mean we readily embrace the changes in our plan. Many spend way too much time fighting the change. That makes for a miserable existence.

I will be the first to admit I am not thrilled that I have this disease, or that I went deaf from it, or that I decided to go a different direction in life. I miss the old me. Yet there has been so many blessings that have come from it. Yes, really.

The biggest change that has happened is what has become my passion. It used to be farming. Dairy farming specifically. I loved and lived for my cows. But something changed and it has been for my benefit.

If you've followed me for any length of time, you know I am very outspoken about the benefits I have had because of getting my Cochlear brand cochlear implants. Reaching out to people has become somewhat of a passion of mine. It's easy to understand why. In June of 2013, I thought my future was nothing more than silence, except for the horrid ringing in my ears. Here I was, 48 years old, and no means of communication. I didn't, and still don't, know sign language. Why would I? I had been hearing, albeit only in one ear for 18 years, but I had normal hearing in the other. I had no use for, or knowledge of, anything related to being deaf. Yet there I was, sitting in the doctors exam room asking him if there was anything that could be done for my hearing loss.

And that is when it all changed. I was hoping for an excuse to tell people to bug off when they insisted that I get hearing aids. I knew they wouldn't work, and I was looking for validation. Instead I got my hearing back. And a big part of my life.

Since that time, I have made it a mini mission to attempt to explain what I have gone through. Not so I can receive any puffed up ego, but rather to educate and empathize.

The ability to use what I have experienced by volunteering my time has opened so many doors. Some for me, many for others.

Last summer I was invited to be part of a campaign to raise awareness of advanced solutions for hearing loss. Yeah, that means Cochlear implants. But here is the catch. I cannot talk about my success with them without talking about why I needed them in the first place. So really, I am a two for one advocate. I have even been chided to "not talk about Meniere's disease so much." But that is simply not possible. It is my whole reason for being here in the first place. If I don't have Meniere's, I don't have Cochlear implants.

What I have found interesting is the fact that people find my story interesting. To me, it's just my life, yet whenever I share why I have CI's, people are just struck with such an interest.

This whole back story leads to this point. Because I have Meniere's, I have CI's. Because I have CI's, people are interested in my story. Because I tell my story, people learn about Meniere's disease.

And this leads me to February 9th.

Because I had the opportunity to share my story in a magazine seen only by a group of people who are part of an international organization last summer, I also had the privilege of sharing my story in person with a local chapter of Sertoma International.

Yet I wasn't there because I need the gratification of being seen and heard in public. I was there to thank them. To thank them for their support for hearing loss awareness and financial assistance to those that could use it.

But it also gave me the opportunity to educate them on one of the many ways that a person can lose their hearing. It gave me the chance to tell them, in person, that what they are doing as an organization reaches far more people than they realize. And to share with them that everything we, both myself and Sertoma, does is for the benefit of others.

I have my hearing back. Well, at least while I wear the processors. If this was an ego trip for me, why would I put myself out there to nearly anyone that reaches out? Why would I care that others find hope in my story? I would just go back to my life and push to be my old self again, living only for me.

But this isn't about me. It's about everyone that my story touches.

'til next time

Dennis

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


Wednesday, January 11, 2017

Time to get fired up!


Two things in life are certain. I'm not planning on the first one in the quote anytime soon, but for the second, I am gearing up for year number three of this wild adventure.

Ok, maybe not wild, but definitely an adventure.

When I left farming nearly three years ago, I had no idea what was going to come my way. I was coming out of the worst 12 month period with Meniere's disease I had experienced. I found out that my left ear had been rendered completely useless, no balance, no hearing. I went deaf in my right ear. My right ear was classified as "abnormal" for balance function. My ENT told me that if I lost balance function in my right ear, I would be able to function, but likely wouldn't be stable. I thought my life would be a life of hissing and ringing, but otherwise silence.

To paraphrase a quote from years ago, "I've come a long way, baby."

Make no mistake, I still live with the remnants of this disease. I'm still deaf. Some days avoiding walls is the goal. I still get the mild Meniere's hangover and brain fog. My ears still ring.

But I've moved on.

Three years ago, on a whim, and because I was tired of doing nothing, I sat down with a good friend and, rather than a job interview, I poured out my story. I knew he was possibly looking for a tax return preparer to train to replace someone in the office that may be retiring soon.

I had one Cochlear implant. I did well with it in what I had experienced, but customer interaction was a whole new game. All those different voices. High pitched, low pitched, mumblers, all of it. I had no idea if I could or would be able to hear them well enough to do this.

As for the tax returns, I had less concern, but it was still new.

So we talked. And talked. And talked. And I was given the chance to try. He didn't even care how many returns I did that year. He didn't care if I had attacks in the office. He would get me somewhere dark and quiet, even if he had to physically help me. It was all about me trying to see if this would work, even part time.

And try I did. And succeeded. So much so that the other preparers started asking me questions about doing returns!

Sure there were bumps. The first year I did not do well on the phone. So poorly that the receptionist stood next to me, on the phone, and told me what the person on the other end of the call said or asked, and then relayed the information to them for me. Cumbersome, but it worked.  There were people I had trouble understanding. My fellow preparers would come over and help me.

But it worked. So well, that part way through the year I was asked to consider doing bookkeeping for the firm for clients.

I must say that things improved incredibly when I received my second Cochlear implant. Along with that implant came accessories that allow me to use the phone via Bluetooth, even landlines, and a microphone that I can give clients to put their voice directly in my "ears".

Fast forward three years and I find myself being given more and more responsibility in the tax office. I'm being marketed as the guy in the office to deal with business and corporate returns (something they had not been doing due to lack of time and personnel willing to do them), and the guy to talk to for accounting questions.

I will be completing my first leg of the journey toward having meaningful letters behind my name. This spring, an associates degree in accounting. Next fall, leg 2 begins. Enrollment in the bachelors program for accounting. In between, possibly certifications in accounting software, maybe tax specialist designation. Who knows?

A couple weeks ago I ran into the CPA that we used when farming. I visited with him at length when making the decision to leave the farm career behind. He said he had thought about me last spring and wondered what and how I was doing. When he heard that I was pursuing a career in accounting, he said he thought it was "perfect". How is that for a boost?

As long as I refuse to let this disease defeat me, and the attacks stay away, I have a life to live!

Bring it!

'til next time

Dennis

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

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