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