Friday, December 25, 2015

A winter to remember, but I would like to forget



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

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

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

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

That is until spring of 2013.

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

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

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

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

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

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

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

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

Then winter rolled in.

Cold.

Brutal.

Unrelenting.

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

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

Did I mention it was minus ridiculous degrees?

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

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

Still minus double digit temperatures as well.

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

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

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

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

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

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

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

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

'Til next time

Dennis

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

Saturday, December 19, 2015

My struggles are not your struggles






Picture credit: sarahkallies.com




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

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

Then they go away.

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

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

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

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

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

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

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

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

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

'Til next time

Dennis

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

Sunday, December 13, 2015

Living



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

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




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

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

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

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

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

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

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

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

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

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

'Til next time

Dennis

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

Saturday, November 28, 2015

The bigger they are, the harder they fall



www.pinterest.com




I have become very good friends with a fellow Menierian from another part of the country through the technology called the Internet. We chat nearly daily, so it has been a bit of a surprise when he was nearly silent today.

Tonight I found out why.

He has  been stuck in bed all day with vertigo and lack of balance. The only way he been able to get around is with the help of his son.

This beast doesn't care about who it chooses as a victim, or how big they are. It can drop anyone to the ground in misery.

I am not what people would call a small guy. I go about 6 feet tall and weigh around 210 pounds. I have been dropped like a sack of potatoes from this disease. Boom. Down for the count.  It is rather embarrassing when you are full grown man of my size and you are left to crawl on your hands and knees to get where you need to go, if you can move at all from the misery.

My friend?  He has told me he weighs in around 325 pounds. And yet there he is today, in need of having someone help him to get from point A to point B.

He mentioned yesterday that he was wondering if something was up. His hearing was just wildly fluctuating and was having some interesting sensations in his ear. Guess he was right in thinking things were not normal.

So what has he accomplished today?

Sleep.

And not throwing up.

That's it.

People may question the motives about a person with Meniere's disease, but until they experience the kind of violent vertigo we live with and in fear of, they will never really understand.

Until they witness it first hand, all people can do is either take your word for it, or doubt you. Those are the only options. So much for awareness.

My friend is case and point as to why no one understands completely. As Dr. Alec Salt, professor in the Department of Otolaryngology, Washington University, has stated:

 "I have always argued that if Meniere's patients walked around with one of their legs in a plaster cast, then there would be more funding for research of the disease, because the public would be more aware of the problem. As patients with Meniere's usually head to their beds, or to the bathroom, the symptoms of their condition are invisible to the public and the disease is therefore ignored." 

 So, to all who read this who don't quite understand what Meniere's disease means, I hope you never have to experience it and somehow come to an understanding of how debilitating this thing can be. To those who share my illness. I hope someday we are all able to get on with our lives, if not cured, at least by having some form of treatment available to help control it.

And to my friend, sleep it off, big guy. Tomorrow is another day. May you be back on your feet, ready to take on the world.

'Til next time

Dennis

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


Thursday, November 19, 2015

Critical thinking, or just being critical?

Last night I attended a social function designed to open communication about the future of the region I live in and the opportunities coming due to a major expansion effort by one the the largest employers in the area. I'll admit, I am not a huge fan of these kinds of things. My opinion of meetings is that they are good way to waste a bunch of time.

Part of the function had the attendees gather into small groups and discuss a topic assigned to the group. The results were then reported to the group at large.

One of the groups that I sat in on was concerning the actual expansion and its effect on the community.  The facilitator seemed to have a preconceived idea about the direction he wanted to take this round table, which I found rather ironic.  He wanted to discuss critical thinking skills rather than the topic at hand, stating that when more than 1 person meets together politics become involved and that usually ended up with 1 person trying to control the direction of the meeting. (insert ironic chuckle here)

He asked a few questions concerning critical thinking and then I offered this commentary. It seems to me that rather than the lack of critical thinking being present, the way in which an idea is presented tends to sway the course of the discussion.

If you go to a meeting and an idea is presented as the only possible solution, the first thing that happens is push back from someone else.  How dare someone have the audacity to assume there is only one right way of doing things?!  The idea presented may very well have been the exact solution to the problem, but the mere fact that it was presented in a manner that did not allow for consensus to be reached brought about a confrontation that was neither needed nor desired.

This applies to more than political or business ideas.

Have you ever had a medical professional come across as so arrogant you could not accept what they were saying?  Even if it was the best solution for your medical issues? But what do we do? We find a different doctor who presents the exact same diagnosis and treatment, but does it in a nicer way.

Seems rather silly when we think about it.

How about family and friends? Ever ask one of them for their opinion and when they give it get upset because it isn't what we wanted to hear?

The same thing can happen when we talk about our illness.  All it takes to turn a simple conversation into a full blown confrontation is the change in the tone of ones voice.  In an instant, the person explaining their illness goes from seeking empathy and understanding to a whiny, complaining grade school child.

The person being told does the same as well. They turn from a confidant to an accuser, more than willing to lay blame at the feet of the chronic sufferer.

All because of a persons (poor) choice of words and how they are presented.

Silly.

While we all are subject to fall into these same traps over and over again, it would be a good thing to stop at the first sign of this happening. Call a temporary timeout to have everyone involved gather their thoughts before continuing the conversation. And if the current situation can't be resolved at that very moment, walk away before it gets out of hand.  It is much easier to walk away and pick it up later than it is to attempt to right the wrongs that take place because you continued it into a full blown argument.

Trust me, I know.

'Til next time

Dennis

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

Sunday, November 8, 2015

An Inadvertant Advocate







www.jazzroadvocate.net



I never expected things to go this way. Honest. I thought my life was set. I was a farmer. It wasn't what I did, it was what I was. It was in my blood.

I felt that was all I needed in life, the ability to work hard. If I just did that, everything else would take care of itself. Anyone with an all consuming passion for something in life understands where I am coming from.  As long as I could do what I loved, nothing else mattered.

Even the first 18 years of this disease in my life didn't change that. Give me a chance to get through the misery and I was good to go. Very few probably knew what I was fighting with. And that was perfectly fine with me. I had things to accomplish. Goals to reach. It was all about my love for farming, and my cows.

I'm not even sure when it changed, but as time went on I felt as though I had a larger calling. I kept thinking there was more to my life than simply getting up early and working late.  I felt a need to affect other people's lives in a positive manner.  The feeling was strong, but I really had no idea what I was supposed to do about it.

Then 2013 hit.  A year that changed my life in so many ways. Some negative, and I have written about them in many of these blog posts. Some positive, which I have shared a few.

One of the most interesting and, honestly, most fulfilling ways my life has change has been because of the issues of Meniere's disease that resurfaced during that year.  The attacks came back, with vengeance. I went deaf in the second ear, as well.  I reached the point of exhaustion trying to keep my dream of farming alive.

So, what could possibly be positive about these things?

It forced me to confront them. Head-on.  I could no longer depend on being able to fight the affects off by myself anymore.  It was the realization that I was not on this journey alone, and that no matter how much I "wanted" things to be the way they used to be, they were forever changed.

It also led me to talk about things to my wife, to my family, to my doctors, to my friends.  It somehow made me into something I never  thought I would be: an advocate. Not so much for the effect of people giving of themselves to help me, more of an advocate for those who were dealing with the same issues I was going through. A shoulder for them to lean on and someone they could talk to. Someone to let others know that this is real, and affects more people than you realize.

And surprisingly, it feels pretty darn good!

I believe that many people with Meniere's disease are embarrassed by their symptoms. It's understandable. I know I was.  It takes a long time to get to the point of being able to say, "it is what it is." I am not there at times still today.  Sometimes I am still in denial.

And then somethings happen that you don't expect that make you realize what the purpose of having this may be: helping others deal with it as well.

I have written in the past that I do not wear this disease on my sleeve, and that is very true. I don't use it to gain attention for myself. At the same time, I no longer attempt to hide myself behind it either. And others have noticed. And that is a good thing.

I have had more than a few talks with people who share this illness, as well as their families.  It seems to be reassuring that they are not alone.

I also have not hidden the reason I went deaf from anyone.  It is important for people to know the why.  This has led me to be a mentor for several Meniere's sufferers that have also gone deaf.  Many of them come to me due to my Cochlear implants.  Some looking for hope, some for reassurance, some for guidance. And I have done my best to be honest and straight forward about my experience and what they should expect, if they decide to go down this road as well.

A few of these people have sought me out, others have been directed to me. To me that is a huge compliment. To have someone trust you so much to help others that they willingly direct others to you for guidance.  I have now spoken with 3 from Canada, several from the USA, 1 from the Philippines, and a couple from Europe. All this because we share so much, and have had the same concerns going forward.

I can only hope I have affected the people I have been in contact with in a positive way. That would make all of the misery that Meniere's disease can pile on a person worth something.

'Til next time

Dennis

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

Saturday, October 31, 2015

Cochlear implant update- 6 months




Most recent audiogram. Red circles is the residual hearing following CI surgery. Blue c's left ear CI, red c's right ear CI.


What a difference three months makes.

I recently returned to my audiologist for my six month programming session for my second cochlear implant. This, by far, was the most comfortable I felt with my current audiologist.

I had the first appointment of the day on the audiologist's calendar. 7am! Typically the appointments have lasted less than 2 hours. This one lasted 3.

I could tell something was different right away. She was more willing to chat before getting to work on the programming. And during it as well. We were able to cover a lot of ground in how I was hearing and what my concerns were for her to attempt to work on. It is vitally important that a person with Cochlear implants has a good relationship with their audiologist. After all, they are your ears. If you aren't able to communicate with the audiologist about how things sound, they don't know how to program the processor to get to a desirable outcome.  The device in my head, and the processor on my ear, is only as good as the program installed on it. That is just a simple fact. A bad relationship leads to a bad hearing outcome.  Many of my CI friends have made the statement that the person isn't just their audiologist, but a full fledged member of their family.

This audiologist is the third one I have worked with since my first implant in 2013. I haven't had 3 because I didn't like them, I have had three due to situations beyond my control.  The first audiologist retired (although she is back to work part time). She had so much experience and knowledge. She was in the operating room in 1984 when my clinic performed their very first implant surgery. It is hard to lose that kind of knowledge.  The second audiologist happened due to the retirement of the first. We immediately hit it off. And she was brilliant. Some of the ideas she came up with helped me in so many ways on my journey with the first implant. She worked with me right up to the point of ordering the equipment for my second implant. Then she needed to take a leave, maternity leave. I can't blame her for that. She was having twins! So this led me to my third audiologist.  She would be the one responsible for activating my second implant, and she has been the one I have worked with exclusively for my CI's since then.

It was a bit tentative at the start, but after this session I have full confidence from her ability.

The session started in the typical fashion of going through all the necessary steps to get the correct program. Then we headed to the sound booth.

It's interesting that when you are losing your hearing you dread the "booth". You know you are going to fail the testing. It is only a question of how bad you are going to fail.  When you get a cochlear implant the opposite happens. You look forward to the booth!

I couldn't wait to get in there and see how much better I was from the testing 3 months ago.

She also wanted to see how much, if any, of the residual hearing had been preserved through the surgery.  Technique has improved so much that it is quite common that some of the natural hearing will be saved after implant.

So, how did I do?

The improvement has been nothing short of remarkable.

Three months ago (at 3 month's post activation of my second implant) we tried a new test for sentences. A test called AzBio. These are more difficult sentences spoken by different voices. Some were men, some were women, and they were random in who would speak.We used the same AzBio tests this time.

 My results at 6 months are 54% of single words correct. the words are CNC words. Examples are dig, big, dug, bug, rug, such, much, etc. On the same test, I got 74% of the sounds correct (phonemes), meaning if the word was goat and I said boat.

On the AzBio sentence tests I scored 88% of the sentences correct in quiet. 88%!

They also do the AzBio test with background noise. The voice of the speaker is only 5 dB louder than the noise. Think talking to someone in a noisy bar/restaurant, but with no visual cues or context for the sentence.

Three months ago I scored 0% on this test. I could not distinguish the voice of the speaker from the background.

This time I scored 56%! In three months a 56% improvement!  I was actually thinking that it couldn't possibly be the same test as last time. The voices were so clear.  The only trouble I had was on the sentence where the speaker spoke very rapidly or mumbled.

When my audiologist came in the room she had a huge grin on her face.  You could see the excitement she had for me and my improvement. She may have been more excited than I was.

This journey has been nothing short of amazing and I know I have more room to improve, and I will. It has definitely been worth the risks involved for me. And I know that I have a very competent and caring audiologist to work with to get me to where I need to go.

'Til next time

Dennis

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

Friday, October 23, 2015

Pumpkin Bowling




www.hawkshillcreamery.com


My first baby is almost all grown up! It is bitter sweet. You can't wait for your children to grow into mature, responsible adults. And yet, you want to hold on to them as long as you can. Time goes by so fast.

It has become a tradition at my daughter's school to do a "sounds of the stadium" concert every fall. It is a concert that consists of "pep band" music and an indoor performance of the marching band half time show.

It is also the start of what can be considered a year long celebration of the seniors final year involvement in the band program.  The band director takes great pride in his relationship with his band students and take every chance to recognize the dedication of the upcoming graduates. After 7 years of commitment to the music program, this is the year they get to be celebrated for that commitment.

It has become the directors trademark to interrupt the fall stadium concert for fun and games with the seniors. Every year, the 12th graders are asked to introduce themselves and call on someone they care about to partake in the fun out on the gym floor.  Past events have been marshmallow tossing, with parents and seniors attempting to catch them in their mouths from the other ones toss. A different year they had furniture dolly racing with one on the dolly and the other pushing them around a track.

This year was my daughter's turn.  The trick is, they never know what game he is going to come up with.

My daughter informed him of my balance issues and asked what the game would be. He wouldn't tell. She asked my wife if she would be part of the fun. My wife declined. She asked me if I would consider it. I hesitated.  My biggest fear was the dolly racing. How could I make it around the gym either riding or pushing?  This was all before the concert started.  My daughter was truly concerned for me, as was I.

When it came time for the seniors to step forward, my daughter looked at me in the stands and asked if I would join her. I decided, why not? It is her last stadium concert. So I went out on the floor not knowing what to expect.

I don't know if he took her concern before tonight into consideration or not, but other members of the band rolled out 2 big carts filled with bowling pins and bowling balls.

Yes!

I can handle this!

Then the twist.  We did NOT get to use the bowling balls. Instead we got to bowl ................with PUMPKINS!

My daughter and I didn't make it to the second round of the bowling contest. It didn't matter. The fact that I got to spend one more time with my (not so little) girl was worth the risk of what could have been. Instead of sitting on the sidelines feeling sad for not participating, I was out there enjoying the moment. A moment that, all to soon, won't be available anymore.

'Til next time

Dennis

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

Friday, October 16, 2015

No words

I hate when this happens.

I have started maybe 5 blog posts this week and trashed every one of them.

It's not that I am out of ideas about what to write about. It is that none of them flow. Nothing.  It is really painful when you type a page or more and when you look at it, it is awful. The only thing I have gotten out of it is typing practice.

It's harder than you may think.

Maybe it has to do with the fact that I have written more in the last 8 weeks than I have written in my life. I had an English paper due. 10 paragraphs, each one eight to 10 sentences long. Total amount of writing- 5 double spaced pages.  Right behind that was another writing assignment. 22 paragraphs, each 8 to 10 sentences long. Total writing- 6 single spaced pages. From that I have been thrown into another assignment due in 2 weeks. Length? Minimum of 13 paragraphs. Yup, each one 8 to 10 sentences long.

That combined with keeping two blogs going has me out of words. Is that even possible?

Something else that may be contributing is the the fact that life with Meneire's disease has been quite good lately. I have no major complaints. I have no burning issues to discuss. No news is good news, right?

But it makes for short or non existent blog posts. And that isn't good.

So how about we try something a bit different this week. How about I turn this week over to you, the readers? Leave a comment. Share a post. Just try to keep it as positive as you can. Post something about your resilience, about how this disease has affected you in a good way.

I AM being serious.  Put on your thinking caps. Dig down into your life and see the positives in it, despite having what is generally considered a miserable disease.

You can do it. I know you can.

Be an inspiration for someone who is struggling. Lift them up. It feels better than you can imagine.

And don't be afraid to leave some ideas for me to draw from for future blogs.

'Til next time

Dennis

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

Friday, October 9, 2015

Like a deer in the headlights

Photo via YouTube.com
Freeze! Stare intentley. Crouch a bit. Which way should I go? Left? Right? Nowhere? How about to the ground?

This pretty much summarizes the exact moment a vertigo attack hits. Many thoughts cross your mind as to what you should do, but you can't do any of them. You are frozen, hoping it will pass.

A little longer now. Slowly move. Nope. Wrong way. Try the other. Not that way either. Freeze again.

Meanwhile your life is waiting for you to do something, anything. Life continues on around you. Walking, talking, moving. Yet you can't.

Finally you pick a direction and brave the move.

Too much, too soon. Here comes the nausea. This is not going to end well, we can tell. Trust us.

If only it would pass as quickly as it arrives. Here in an instant, gone in an instant. But that isn't what happens. Instead every step for the next several hours is an effort. Even looking at something, somewhere, hurts.

But back to the beginning.  Don't we feel like a deer caught crossing the road in the dark of the night?  Headlights are so bright. And scary. We were simply trying to get to the other side. There is better food there. Or water. Or the rest of our herd.  We only want to get across the road. We only want to live our lives.

But there we are, caught. It was though we are some kind of thief that does his work in the dark. As long as we aren't seen, we can get away with it.

Why do you have to have such bright headlights? Why did you have to find me?

We should have done this. Or not done that. Doesn't matter now, you caught us. So here we stand, terrified, petrified, and completely clueless as to what we should do next.

'Til next time

Dennis

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

Thursday, October 1, 2015

The Ultimate Compliment: Part 2

On the heels of the amazing compliments I received on my writing came another, but this one on a completely different aspect of my life.

Part of my career change led me to visit with a close friend in October 2014 about the possibility of going to work for him as a tax preparer. I had heard through the grape vine that he was looking for an additional preparer for his independent office. So I gave him a call and set up a time to go visit him.

Being friends, he knew a bit about my health situation, and being a friend, I was completely upfront with him about what could happen concerning attacks and the need to quit work for the rest of the day on a very short notice. I also told him about my struggles with hearing. To say he was understanding would be an understatement.

He explained what the position would entail and encouraged me to sign up for a continuing education course to learn as much as I could about preparing taxes. I knew I would have no problem on the tax prep part. My concern was dealing with the public on a daily basis.  He assured me I would be fine and said that he wasn't hiring me for this tax season, but to train me for the future.

One of his preparers is a lady in her 80's.  Her knowledge of tax law and tax prep is second to none. But she is in her 80's! At some point, by her choice, or because she has to, she will need to quit and he didn't have any extra space in his client list to pick up her clients.  He stood the risk of losing them if he didn't find a replacement for her.

He told me he did not expect me to be real busy the first year, which I must admit was a good thing.  He also said that he would send some of his clients my way and another preparer would have no problem sending some of hers, and I would get the majority of the new clients.  But as for the preparer who is 80, don't expect any from her because she is very "territorial" and will not give up her clients.

As the tax season progressed, I noticed this lady was starting to ask me tax questions. ME?! The rookie!  Then she was asking me to check over some of her returns because she wasn't sure she had covered everything and didn't want to miss anything for her clients. Then she actually gave me a couple of hers.

After the tax season ended, I didn't really stay in touch with my friend about the future of my tax prep. I had other things on my mind.  I did talk to him when I was considering going back to school for accounting, but didn't discuss the tax office.

A couple of weeks ago, I met with my advisor from college to set out the path for my degree completion and talked about the upcoming semester. The semester that will take place during tax season.I needed to figure out if and/or when I could be in the classroom and if/what courses I would need to do online to keep my degree on schedule.  I decided I had better talk to my friend/boss to see if he was losing a preparer and how it would affect my coursework.

He had recently talked to the 80 year old and she told him she was planning to work this year again and had signed up for the continuing ed course, but she didn't want to work as much as last year.

Then she gave me the ultimate compliment.

He told me that he has had a few different preparers over the years and she would never give up her clients to them. She told him that she was completely comfortable with me taking her clients over.  In all her time working there, I was the first one she has ever said that about. 

Talk about being honored.

If and when she does hang up her pencil and calculator, I will have some big shoes to fill.  But knowing that she has expressed this much confidence in me tells me that I will be able to handle it.

Now if only my illness will let me.

'Til next time

Dennis

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


Wednesday, September 23, 2015

The ultimate compliment: Part 1


Everything happens for a reason. I firmly believe that statement and I am confident that whatever does happen is for the best in the long run.  This has been made clear on several occasions in my life and seemingly more often in the past year since leaving farming on a full time basis.

I started writing mainly as a pressure relief valve in my life. The stress of the last three years, with the return of violent attacks and going deaf was a heavy burden, as was trying to operate the farm through the whole mess. I tried talk therapy and I don't know if I was really getting anywhere with that, and it was expensive, so I turned to writing as a way to release some pressure in my life. It started by joining Facebook following my 1st cochlear implant surgery. I needed something to do during the recovery from it. I had always joked to my wife about her being on "waste of time book" but I joined out of curiosity to see what all the hoopla was about. I did everything I probably shouldn't have. I shared too much too often. My posts were long drawn out explanations of what the recovery from surgery was like and what happened when I got activated. I am surprised the people I had as friends read as much as they did.

 I decided it was time to not share it in the realms of facebook, but put it in my own words in a different format, so I started to blog. I had no idea how many would read them, I didn't really care. It was a way for me to put down my thoughts and words to electronic paper and if I helped someone else, so be it. I was looking for a way to share what I knew, and sometimes, the frustrations I have due to Meniere's disease.

I have no formal writing training or experience. I just write. Apparently I write well.

As I have written and published these blog posts, more and more people have come on board to read them.

A few weeks ago I was asked if I would consider blogging for http://menieresresources.org/. I was shocked and a bit embarrassed. To think others felt I was worthy of such a position was humbling, to say the least.

While I was contemplating whether I should accept the invitation or not, I did something I had wanted to do for some time. I contacted a nationally syndicated newspaper columnist that I have admired for his wit and ability to make a person think in his columns, and asked his advice and shared this blog with him.  I thought if he responded at all I would be thrilled.  Much to my surprise, he replied very quickly to my email. Even more surprising were his comments to me and my blog/writing ability.  I expected, at best, a nice letter thanking me for appreciating his work. Instead I got what may be considered an ultimate compliment. The kind only given out by peers.

 "Dennis,
I’ve been reading your blog, and reading up on your illness.

You write well – clearly and with conviction.  Your writing does a good job of showing what cards you’ve been dealt and how you’ve chosen to handle them.  Kudos to you.

It’s easy to see why you’ve been asked to write on a regular basis."

That was pretty neat. And that was just the start of his letter. He then went on to give me some actual advice on the craft of writing.  He even suggested his favorite book on the art of writing, written, oddly enough, by horror novelist Stephen King, entitled "On Writing." I am looking forward to getting a chance to read that in the near future.

He also encouraged me to start a Facebook page as a home for my blogs. I now have that home, "My Life With Meniere's Disease " on Facebook. A link can be found on the sidebar of this blog, if reading it on an actual computer.

His graciousness didn't end, and he explained his experience as a professional writer.

In closing his letter to me he wrote,

"If you have specific questions, I may be of some use, but I can’t promise. What I can say for sure is that you have the two qualities that a writer needs.  

1.  You have something to say.
2. You are skilled at saying it."

These are words that I honestly never thought I would hear as a writer. It leaves an impression on me that will carry forward for a long time. I appreciate them, and certainly do not take them for granted.  One piece of advice that he gave me was to "get a little better each day" and I intend to do that, if at all possible.

The point I am trying to make isn't about glory for me. I am not that kind of person. It is to say that the old saying may well be true, "if life gives you a lemon, make lemonade."  Take a chance to do something you never envisioned yourself doing and you too may receive the ultimate compliment.

'Til next time

Dennis

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

PS  I did accept the invitation to blog for Meniere's Resources and I encourage you to check out the link in this blog to see what their organization does!

PPS check out the author that I contacted at https://www.facebook.com/Independently-Speaking-196312848918/timeline/

Thursday, September 17, 2015

Farming with a balance disorder

September 14-21 is Balance Awareness Week so I thought it would be fitting to tell you what it was like to be a farmer with a balance disorder.

In my early days of having Meneire's disease, I didn't have an everyday problem with balance. The disease was completely random, with attacks in clusters of 3-5 attacks for a week, then it would go away for varying lengths of time. During the absence of attacks, my hearing and balance would return to normal. There was always the underlying fear of the next attack, but life was pretty much normal.

During the attack phase it was much different.

The attacks would leave me on the ground lying in a fetal position hoping that the vertigo and nausea would be short lived.  I was, and am, one of the fortunate ones whose actual rotational vertigo only lasted a brief period of time. The longest actual rotational vertigo was 2 1/2 hours. Having read up on the disease from the very beginning I knew and feared the stories of rotational vertigo lasting in excess of 24 hours for some. I wondered how anyone could endure that.

The nausea was another story. It was common for me, even if the vertigo lasted less than a minute, to be nauseous, to the point of vomiting, for up to 12 hours. Walls became my friends. Without them I wouldn't be able to travel from point A to point B.

During the attacks, it was impossible for me to run equipment. The noise sensitivity, bouncing, and turning would have only sped up the removal of food from my stomach.  It was left to my father to cover for me in the beginning, and my wife and children later on.

Working with large animals wasn't pleasant either.

Later, as the damage progressed, I started to notice little things that had changed. I noticed that, even without an attack, it was becoming less enjoyable to bounce in a tractor. Skid steer loader work would make me nauseous. All the air ride seats in the world won't compensate for a vehicle without a suspension system.  The most telling time was spring of 2014. I was working a new piece of ground we had rented and needed to stop in the middle of the field for 20 minutes before I was able to drive to the edge of the field to quit. The bouncing had set off an incredible amount of nausea. The field was bouncing, not me.

And if the lighting was poor, the motion sickness feelings came easier. Part of having a balance disfunction is that you become much more reliant on your eyesght and feet/legs to mantain your balance. Low lighting, or no lighting, takes away another one of your senses, leaving you with just your feet and legs. That just doesn't work. It was, and still is, rather comical to watch me walk in the dark. The only time I am on the path is when I am crossing it. I look, and feel, like a stumbling drunk, and I don't drink!

Working cattle became, well, work.  I am very adept at handling large animals. If one wanted to be stubborn, I was able to use leverage to move them where I needed to. I wasn't rough, just persuasive.  As I started noticing changes this became harder. Most people, when they get jostled by a large animal, take 1 step to regain their balance. I took 4, and 3 of them were stumbling. The extra amount of energy it sapped was incredible. I got to the point of dreading having to work cattle. The laws of physics just weren't in my favor.  Moving one 1500 pound cow was a challenge. Doing that with 100 cows was exhausting. Add in the stress of knowing that you were going to be getting jostled, and you were no longer adept enough to out maneuver them, and it became something to endure, rather than necessary.

It was getting to the point of needing 10 hours of sleep a night just to be able to function the next day.

When I made the decision to leave farming it was part knowledge, part fear. The knowledge wasn't a conscious knowledge, more a feeling deep inside that told me it was the right decision. The fear was from a statement from my doctor. At one of my appointments, after they had determined that I had lost all balance function in my left ear, he said that if I lost the the balance function in my right ear as well, that I would "be able to function, but would likely be unstable." Who, at the age of 48 (at the time) wants to "function"?

The day the cows left I was in bed by 8 p.m. and woke up at 10 a.m. the next day. The second night was 12 hours, the third, 10.

Although I miss the cows nearly every day, I know that I wouldn't have been physically able to do it for much longer, and I get tired just thinking about getting cows back. I have no idea how I kept up the pace I was for as long as I did.

Life is too short to feel like vomiting all the time.

'Til next time

Dennis

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

Tuesday, September 8, 2015

Hearing loss? Blame the victim

I recently happened across a transcript from a specific broadcast of radio host Rush Limbaugh. I'm not here to debate his politics (or mine, for that matter). Nor am I here to promote his show. What I am here to do is to say that hearing loss affects ALL kinds of people and, regardless of who we are, we tend to be treated the same way. We get blamed for our hearing loss.

In this specific transcript, he had a caller ask him about his emotions about being deaf. (In case you were not aware, Rush lost his hearing very rapidly and now has bilateral cochlear implants). He related his story about his journey to deafness, how it affected his career as a radio personality, and some of his emotions.  What I want to dig into is one specific part of the transcript.

He had someone walk up to him on the golf course and ask him why it was that hearing loss is the only disability where the victim gets blamed. Rush asked him what he meant by that. The guy asked Rush if anyone ever got upset with him for not hearing.

We all know the answer to that! Of course they do! But why?

We don't go around getting upset that the blind can't see the pictures we are showing them. We don't lose our temper when the paralyzed don't get up and run. Yet, as a person who loses their hearing we get blamed. "You don't listen to me!" "Pay attention!" " I told you this already!" "Why didn't you answer my call?"

Why? Why is it that people who can't hear are expected to be completely responsible for their situation and how to remedy it? Doesn't anyone understand that it isn't because we didn't listen, but rather that we didn't hear them?

And I think that is exactly the point. They don't realize it. How can they? They can hear.

Hearing loss is different than these other disabilities because with the others, you know when you are missing something. With hearing loss, you don't. You can't know what you are missing when you don't know it's supposed to be there in the first place.  If a person talks to you and you don't respond, they think you are ignoring them or are upset with them.  If they are not directly in front of you, how are you supposed to know they are there in the first place? How can I ignore something I didn't know was there?

Hearing people can't understand that because they have no way to relate to it, so the immediate response is to assume you are ignoring or upset.

Being deaf isn't something you can experiment with, either. I suppose a little cotton in the ears may give some idea, but you generally can still hear something.  You can pretend to be blind or paralyzed. You really can't pretend to be completely deaf.

There is also no outward sign that we are deaf. We aren't missing ears. We don't carry around any type of equipment large enough for people to see.  Even hearing aid companies tend to not help in making our loss known.  The most important feature of most hearing aids is that they are "nearly invisible." This doesn't help.

So, what will help? Not being ashamed of our hearing loss. Being willing to talk and explain.  I know several others who have cochlear implants, such as myself. They have no shame and bling them out with stickers, jewelry, flowers, you name it. When I chose mine, I did get a color to match my hair, and the location of the coil doesn't always make them visible from the front. Maybe that was a mistake. Maybe I should have gotten a color that was noticeable. I do always have my wireless accessories in full view, and have people ask about them. One place you can look for ideas to show off your aids is skinit.com . This is a company that makes custom covers for hearing aids and cochlear implant processors. thehearclip.com is a place to purchase jewelery for your aids and processors.

It's time that those of us with hearing loss quit being ashamed of, and blamed for, our inability to hear.  It would be wonderful if we were the last generation to have people have to fight through the stigma associated with it. It's time we stand up and proudly say "I can't hear you. Please do something to help me understand. I want to understand, help me to do that!"

'Til next time

Dennis

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

Wednesday, September 2, 2015

Of things past and present (multi part)


Part 1: Farm boy fearless


Growing up on and working on our family farm was the only kind of life I ever would have wanted to live. I know not many will understand this, but I am a workaholic by nature, and farming fits that mentality. Sometimes to a fault.

When I was growing up, and reached the age where I was old enough to actually be of help on the farm, I couldn't wait to dig in and help. The more physical the job the more I loved it. As a teen we farmed with neighboring farms, everyone helping on each other's farm to get the work done.  We baled a LOT of hay. All of it packed into small 50 to 60 pound bales that had to be hand stacked in the barn. Every summer we did somewhere in the neighborhood of 30,000 of these small bales. My hands touched half of them.  There would be many times that the others helping would try to get me to take a break from stacking the hay bales and drive the tractor to get a load in from the field. I generally refused. I loved it in the hay mow. As you stacked the bales the pile grew higher and higher, reaching over 30 feet tall in some of the barns. Generally it was very warm as well. No need for a health club membership.

As the stacks grew taller you still needed to go out to the edge to start the next row. Often between loads one would sit on the edge and talk to the guys on the ground. 20 or more feet up, no safety gear. No fear.

As things changed on the farms, silos would be built and less hay bales would be made, instead opting for the hay to be "chopped" and put in the silos.  As the silos got full a person would need to climb them to tell the person unloading the wagon when to quit before overfilling things and plugging up the fill pipes. Unplugging was not a pleasant experience.

Some of these silos reached as tall as 75 feet. They would give you a very good view of what was going on around the neighborhood.  I loved climbing the outside of the silo and looking down at the person walking around the equipment on the ground. People look funny walking when viewed from straight above.  Sometimes I would climb them just for giggles to look around and have a quiet spot to think.

Enter Meniere's disease.

At the beginning of my journey with this disease my attacks were very frequent and severe and completely unpredictable.  The thought of having an attack while climbing, or on top of, the silos caused a fair amount of anxiety. Most of the time I begged off on doing it. The outcome from having a drop attack 60+ feet in the air would only mean severe injury, likely death. Given that fact, along with the fact that our silos were getting in need of some major repairs to keep them operating, the decision was made to tear them down. Things are safer on the ground.

The first time I noticed things had definitely changed had nothing to do with me being on a high place. I was actually watching a television program. I don't remember which one, but there was a scene where a character was running on a rooftop and jumped off. The camera followed him to the edge and panned down.  I grabbed the arms of the chair I was sitting in.

What the heck was that?

I have never had a fear of heights before!

Now I have trouble watching any show that involves heights.

I recently went to a cabin on a lake where there is about an 80 foot drop down to the lake. I couldn't get within 10 feet of the edge without that feeling of fear and apprehension overcoming me. Not a disabling fear, but one that makes a person force themselves to go on rather than just doing it.  It is not a comfortable feeling.

When needing to climb up into the hay mow I would climb some very scary looking wooden ladders, the kind that bounce up and down as you climb them.  Now I have trouble climbing higher than half way on an 8 foot step ladder without someone around to watch me. Poor balance stinks. Sometimes I just say to heck with it and climb to the top anyway, but it is not fun once I get back down.  I wouldn't even try to climb into a hay mow now.

To be continued at some point in the future..........

'Til next time

Dennis

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

Wednesday, August 26, 2015

Is it Hyperacussis or Recruitment?: When Say What? and Don't Yell! Go Hand In Hand

Hyperacussis or recruitment? Which one affects Meniere's patients?

They are 2 completely different things yet similar enough to be confused for one another.

www.hyperacusis.org defines hyperacusis as:

 A reduction of normal tolerance for everyday sounds. 
It is also defined as a collapse of the normal
range of tolerance for sounds that is present 
in otherwise normally functioning ears.

What this means is that normal everyday sounds at the normal everyday volume seem excruciatingly loud. As with Meniere's disease, there is no absolute known cause.  Again from hyperacusis.org:


 It can initially affect only one ear but generally speaking, within a short time, the condition is almost always bilateral. It can be mild or severe. Often, people who have hyperacusis also have tinnitus, or phantom noises in their auditory system (ringing, buzzing, chirping, humming, or beating).  Research has shown that about half of all people who have tinnitus, also have reduced tolerance for moderate or loud sounds, known as hyperacusis. No one is quite sure how many people in the world suffer from hyperacusis without tinnitus.   
Adults and children can develop hyperacusis: certain birth conditions are associated with hyperacusis, including Williams Syndrome and autism.  Since the auditory system connects the outer organs of hearing with the central nervous system, through a complex series of neural pathways, that literally pass through or coordinate with many diverse areas of the brain, there are endless possibilities for dysfunction that may contribute to hyperacusis.

In other words, the understanding of the mechanism of hyperacusis is often extremely challenging and it is yet impossible to specifically locate a single structural change that is responsible for hyperacusis.  There is no objective test for hyperacusis.  

It is a safe bet that during a vertigo attack what we suffer from is hyperacusis, the acute intolerance to sound.

Recruitment is a bit different.

www.hearinglink.org defines it like this:

Recruitment is a large increase in the sensation of loudness with only a slight increase in the actual intensity of a sound.  Even though quiet sounds cannot be heard due to the presence of hearing loss, louder sounds may quickly become uncomfortable to the listener as they increase in volume.  Recruitment is commonly associated with a sensorineural hearing loss and does not vary with emotions. 

Here is how it has been explained to me.

Inside your cochlea are thousands of microscopic hair cells. These cells are aligned in rows for each frequency. As you hear sounds, the first row of hair cells start to vibrate, or bend. As the sound continues to grow louder, the next rows begin to vibrate or bend. This continues until the loudest sounds are engaging all of the rows of hair cells.

When your hair cells become damaged, it is the ones that react to the quietest sounds that get damaged first, hence the reason you can't hear soft noises. As your hearing progressively gets worse, more and more hair cells along the line become damaged.

Now, when you have recruitment, what happens is that the damaged hair cells attempt to "recruit" neighboring hair cells to hear for them in the damaged frequency, as well as it's own, overloading the recruited hair cells. What else happens is that when all the hair cells at a certain volume are damaged, the sounds at that decibel level are skipped. You don't hear them at all. So when a sound reaches the level that you can hear them it gives you the startle effect. But you don't hear it at a soft level, you hear it at the actual volume that it is presented, which may be extremely loud.

For example, if your hearing is damaged to a level of 70 dB, which is a bit on the high side of normal conversation, you won't hear anyone whispering, but when they talk to you it will seem loud because you are missing all the soft sounds. Or if your hearing is in the profound hearing loss range of 90dB, the first thing you may hear is a horn honk, but not the car that it came from.

This also creates a problem when trying to fit a person with hearing aids.  The usable hearing you have between the softest sound you hear, and the loudest you can tolerate is called your Dynamic Range.  The narrower that dynamic range, the less benefit you are going to get from hearing aids because they have to be set at a level you can hear, but stop at a level you can tolerate.  If your hearing is at 80dB and the loudest they will set them is 120dB, you are not going to hear as well as someone who has hearing loss at 50dB.  The hearing aids can't make you hear something you are unable to, and it is almost impossible to compress all of the sounds into a very narrow range.

It is also known that a person with no hearing loss cannot have recruitment, so their sensitivity has to be hyperacusis.

As hearing loss associated with Meniere's disease advances, it is very likely that we suffer from recruitment on a daily basis. I know I did.

So, which is it, hyperacusis or recruitment?

Probably both.

'Til next time

Dennis

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


Wednesday, August 19, 2015

The struggles of being late deafened, and having your hearing restored

I know what you're thinking. "Here he goes again, lauding his Cochlear implants!" Well, maybe a little, but I want to write about some of the struggles that are presented by being late deafened, or losing your hearing later in life after having normal hearing for most of it.

I think the struggles and challenges are significantly different for those of us who lose their hearing later as compared to those who grew up with hearing loss. Here's why:

When you grow up with a loss, it is just part of your life. You learn early on how to deal with it. Maybe you learn sign. Maybe your entire family and circle of friends learn it as well.  Maybe you use hearing aids , maybe not. Whatever you do, it is just who you are and it's all you know.

Now consider the late deafened.

You don't know sign. No one around you does, either.  You don't know what accommodations are available, or even where to look. One day you can hear, the next you can't. You don't know how to react. Fear? Anger? Disappointment?  You may begin to isolate yourself from your own life. Most of the time, you don't have time to ease into this new life, it is thrust upon you whether you are prepared for it or not. What about my career? Family? Friends? How patient are any of these going to be?  You don't always have time to just shut your life down and immerse yourself in change needed.

It is difficult to explain to friends you don't see often that you are deaf, and in my case, how I went deaf. There are a lot of people that never knew I was deaf and are confused as to why I have Cochlear implants. It also doesn't necessarily help that getting my implants had such an immediate positive response. Many never saw me struggle the way I did for nearly a year. They never saw me unable to use the phone. They never saw me refuse social engagements while my family went without me. They never knew the internal battle I was having.  All they saw was me as a hearing person, then a person with Cochlear implants. They missed the whole time in between.

And there are still challenges. While most I talk to don't notice or say anything to me, there are those that go out of their way to treat me different, and not in a good way. I have some that like to accuse me of still not hearing and use it as an excuse to get upset with me.  The thing is, I miss very little, and I usually hear the entire rant.  Sometimes it gets to me, sometimes I can let it slide.

I still have some who refuse to call me despite the fact that with the technology I have at my disposal I hear very well on my cell phone now. Some very blatantly make a point of letting everyone within earshot know that "he can't hear on the phone", which is simply not true.

It is also a challenge for me to talk about my success with my implants. I always have to either start or end my discussion by saying that my results are not a normal response. Again, people didn't see me struggle, and in most cases I am the only one they know with an implant, so the results they see with me are automatically considered normal.  The truth is, I am a rare exception to the rule when it comes to implant recipients.  The vast majority take 6 to 12 months to retrain their brain to hear again. That is normal. Pushing the button to turn them on and hearing, albeit a little weird sounding, is not the the norm.

Typically when a new recipient is activated, or switched on, the first few programming sessions are used to get people used to more volume. My audiologist, at the second programming session even mentioned that. Then she followed it up by saying that that seemed rather pointless in my case and sent me home with a completely functioning programmed processor.

The success I have had also makes it a challenge to help those who are struggling more to regain their hearing. I never experienced it, how can I understand?  I was at a meeting for implant recipients recently and everyone was to introduce themselves and tell their CI story. When I told mine, I said I was a rare exception to the rule. I was a racehorse right out of the gate.  During a break a man came up to me and said he would give anything to trade places. He was out 2 months from activation and his word scores were only at 45%.  At 3 weeks, I was over 80%. For him it is hard work to rehab his hearing. For me, I struggled to find a reason to do rehab.

It can also be a struggle to watch people who can benefit from this technology reject it outright. I know the positives, not just my own, but of hundreds, if not thousands, of others that I have been in contact with in one form or another. I don't fault people for looking at it and then deciding it isn't for them, that's their choice. But to just dismiss it without any thought or consideration?

Some may accuse me of being overly upbeat about my results. At times I will plead guilty to that charge. I am getting better, I think, at not sounding the trumpets every chance I get. In reality, though, it has given me back my life. Maybe even improved upon it beyond where I started.

'Til next time

Dennis

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


Thursday, August 13, 2015

Progress

Better, Definitely better.

Things appear to be on the upswing again.

I don't wish this disease on anyone. The ups and downs that are associated with it are brutal. You can go from feeling very well to the lowest of lows overnight, or quicker, sometimes.

For a year I was doing very well. Hardly an attack. Then it starts to creep back. A dizzy spell here and there followed by ear fullness, headache, maybe some nausea.  You hope it's a blip. You pray it's a minor setback. Then it's all on. 14 attacks in a week. At least this time they don't put you down for the count.

The mind starts playing it's tricks again.

What did I do? What did I eat? What brought this on?

Even a bit of self loathing creeps in. Not again? I can't deal with this. It just isn't right to have to deal with this. Why fight it.

That's when you need the strength to stop, look at yourself in the mirror, and make the call to the doctor.

I was hoping for a quick trip in for another round of Dexamethasone injections in the ear to calm it down, but schedules just didn't work in my favor.  My doctor was in surgery that week, not the clinic.  So instead, we decided to attempt another round of oral steroids-prednisone.  That drug bothers me. The side effects I have had in the past have never been good but it was either that or nothing, short term. So I embarked on a 9 day course. 60mg for 3 days, 40mg for 3 days, 20mg for 3 days.

The last time I was on the stuff was for my second cochlear implant surgery. 60 for 7 days. I didn't sleep for 4 of them. I was so wired, that when I did lay down it was more a state of animated suspension than sleep.

This time would be no different.  After 1 day, I had my wife pick up some OTC sleeping aids. I am not sure they were completely helpful. It sure took a long time to get drowsy but I took them, and I slept.

About five days into the course, a team member from my doctor called to see how I was coming along, if the prednisone had done anything. Well, maybe.  While on the 60, the pressure in my ear greatly reduced. All but for 1 day, a day in which I had 4 small attacks, my birthday.

We discussed my symptoms on the phone, as well as my history. Along with Meniere's disease, I was diagnosed as having BPPV in March 2015.  He told me, that had I had no history of Meniere's, he would diagnose me with active BPPV and have me do the exercises again. My mini attacks fit that profile better. The kicker was the ear pressure. The fact that the prednisone lessened it showed him there was something going on in regards to Meniere's, but he asked me to try the exercises again as well.

We also discussed any possible links that may have occurred. This time I might have one, I thought.  The week before this whole mess started back up, I was bitten by a summer bug. I don't know what it's called, but they are common around raspberry plants. A big black ant like bug. I saw it bite me. 3 days later, my forearm looked like a war zone. I had nothing short of 20 to 25 infected pimples on my arm.  The interesting thing is, within 36 hours of the first prednisone tablet, they were healing, and by the end of the course they were gone.

Coincidence?

He didn't come right out and suggest a link, but he didn't dismiss it either. He just chuckled and said it was interesting they solved a problem they weren't intending too.

As for me, I can't help but think there was a link and I will be watching for reactions like this in the future. It may be time to keep antihistamines on hand for it.

As for the attacks, I am back to feeling well.  I did not notice any vertigo while doing the BPPV exercises, but did them for 3 days anyway.  I am back to virtually attack free.

That's the kind of progress I like to be part of.

'Til next time

Dennis

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

Thursday, August 6, 2015

Hitting the reset button



Sometimes you just have to do it. Push that reset button and go for a clean start.  You just need to let go of everything you have learned in the past and start fresh.

I am doing that, you can too.

I am in the process of getting information on a return to school to change the direction of my life.  I know I can no longer handle the hard, physical demands of a career that I have done in the past, so I need to look at what I can do in the future.

That is not the easy part. The easy part is knowing what I have no interest in.  I would not be good in a direct care of another person type career. I would not be a good mechanic, or tech repair. I just don't have a mechanically inclined mind. Art? Please. I have trouble drawing stick figures.

I also know what my physical limitations are. Being in situation where all my time is spent on a phone may not be the best choice. I can hear with my Cochlear implants, but it may be wise to not push my luck with tech failure, and people with an unfamiliar accent.  I have balance issues, so careers with lots of bending and twisting would wear me out. Been there, done that.  And I still have and will always have the risk of sponateous vertigo. Despite the fact that people have asked me if I was going to get a truck driving job, I think that would be a really, really bad idea. (seriously, I have been asked that!  I think to myself, "do you want to be the one in the car next to me at 65 MPH?!?!?!?")

I like numbers. Always have. I like working with computers, analyzing things. I like having things organized and easy to read and understand. It makes life simpler for everyone involved in looking at things.

So, as uninteresting as it may appear, I am pursuing a degree in accounting. It is not a huge leap for me. I have been the bookkeeper for my former business for over 25 years. I have used the latest and greatest computerized bookkeeping software for over 20. I have some formal training in accounting, and I have been building spreadsheets for many years as well. I know my way around. Plus the fact that I have 1 year under my belt as a paid tax preparer, and always done my own return, I think I can handle the coursework.

There is also an important issue involved in this that has to do with Meniere's disease.

I need to do something important, everyone has that underlying need, but not vital.  What I mean by this is, if you have a job where if you can't afford to miss a day or two, now and then, that is a job that is vital.  If it is something , that if you need to leave early, or miss a day or two, while important, it is not vital that you be there.  I believe accounting fits that better.  Yes there are report deadlines and meeting deadlines and such, but, if you miss it, the world is not going to end.

In my former career, I was vital.  If I didn't feel up to doing the work, chances are it didn't get done, or done correctly.  When that involves the feeding or care of livestock, you can't miss. And when you depend solely on family to cover, it becomes stressful, so you push yourself, even when you shouldn't, because you have no other option.

We all know vital careers. Doctor, nurse, power company line worker, police, firefighter.  I would also hope that the people involved in those careers realize the importance of being vital.  Most of these are life and death. You just can't miss.

I appreciate them. As a livestock farmer I was one. My animals depended on it.

And now it's time to hit the reset.

'Til next time,

Dennis

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