Friday, June 26, 2015

In my defense

Ulterior motives.

Hidden agendas.

Product pitches.

Seems like most people who are in a more public setting have them.I don't know if anyone thinks the same of me or my reason for starting this blog.I can assure you, nothing could be further from my mind.  I have nothing to sell. I am not doing this for personal gain.

Yes, I enjoy seeing people respond to my posts.  Only because it means I have touched them in some way.

When reading my blog, maybe you have gotten the idea that I am a glutton for attention. Somehow needy for other people to feel sorry for me.That is not the case at all.I have a disease that few people know about. I am willing to talk about it to people who are interested. But in no way do I wear it on my sleeve or to seek attention.  I would prefer I didn't have it at all.

I am fortunate that most who read this blog have some connection to what I am talking about. I also live in the real world and see the blank stares of people who don't know what Meniere's disease is, or worse don't care or believe that it is real, or believe I have it.

It's tough to tell someone about having random vertigo attacks. After all, I can't show it to them. I can't just make an attack occur for their benefit.

About the only visible sign that anything is wrong is the fact that I am deaf. And for a long time people didn't know that about me either.

I know for a fact that I have put a few, maybe more, people off because they talked to me on my left side and I had no idea they were talking to me, or even there.  I am sure some thought I was aloof when I wouldn't get involved in conversation with them.  It is hard to be part of any conversation when you have to think about what you heard before you respond, and by the time you do, the subject has either been changed or beaten to death. It is easier to just sit there. Or just stay home to avoid it all together.

It's not that I wanted to stay home (even though I am more of a private person), it just gets tiring trying to listen.

It also gets old explaining yourself over and over and over again to the same people who ask the same questions and just don't get it.

The nature of true Meniere's disease also does not lend itself to belief. It isn't like cancer or diabetes or heart disease that is always there, unless you are cured.  It comes and goes as it pleases. I can be perfectly fine one minute and the next be looking for someplace to lie down, or vomiting, or tipping over. And a short time later I may be fine again.  Unless I am in the midst of an attack I don't "look" sick. Unfortunately, that has been what was needed for some to understand. There have been several who, when they see me actually have an attack, have then said to me they have never seen anyone look that bad. Wow! If I were really making this up, I think I would choose something a bit more believable.

It's also hard to explain that there is no cure. In this day and age of medical miracles there are still some illnesses out there that science has not figured out. Not all of them are deadly.

How many times have I been told to "just go get it fixed"? How many times have I been told that I just need to find a better doctor?  And worse, how many times have I been told it is all in my head?  Well, yes , literally it is "all in my head", but no amount of positive thinking or stress relief is going to go very far in alleviating my symptoms in the midst of an attack.

I am very well informed of this disease and spend a great deal of time researching it. When nearly every legitimate source of information says the exact same thing, no one on the outside looking in has any grounds to stand on with uninformed  advice.  I get the feeling that my Dr. appreciates the fact I am educated about it. He seems willing to converse about it more deeply than just treating me, to the best of his ability. Maybe it is a breath of fresh air to him, rather than having someone just loathe the disease and expect him to perform miracles that he can't deliver.

I did nothing to cause this to happen, I can do nothing to make it go away.

The best I can do is learn to live with it and not let it control my life. And educate others to do the same.

'Til next time

Dennis

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

Friday, June 19, 2015

How to teach the people in your life about Meniere's Disease

Meniere's Disease can be difficult to live with. It is even harder to explain to people in your life what you have to live with.  Being an invisible illness is one of the biggest challenges to an easy explanation. The nature of the disease may be even bigger.

Although it is a chronic illness, it has some major differences with other chronic illnesses.  The fact that it does not necessarily affect you in a major way every single day of your life is a huge hurdle to overcome in education and awareness.  The fact that the attacks generally come with no warning is another.

Even though it is difficult, it is still important that family, friends, and co-workers know as much as they are willing to understand about it. No one said it will be easy.

People will doubt you. People will look at you differently. Some may even choose to no longer be there for you. That does not and should not change the fact that you must still educate every chance you get.

Wyatt Myers, in his article "Invisible Illness: When Others Can't See Your Pain" in "everyday Health" has some suggestions on how to educate those around you.

He suggests starting with your doctor.This one is quite simple. As Dr. Jacob Teitelbaum, MD, and director of the Fibromyalgia and Fatigue Centers states:

"If you have to convince your physician you have a real disease, you are seeing the wrong physician."

Mr Myers next suggests that you get your co-workers to read as much as possible about your illness, followed by getting a loved one to join you at one of your medical appointments. As one of the patients interviewed for his article stated:

"Sometimes, if they can hear it from a doctor that you are suffering from chronic [illness], that will help them accept and start to understand what's wrong with you." 

The point of all of this is very simple. You must teach, teach, and continue to teach, about Meniere's disease.

It is also very important HOW you teach.  It is vital to not come off as whining or complaining because we all know no one listens to chronic complainers.

So, how do you know if you have crossed that line?


  • If you catch yourself saying the same thing several times in a very short period of time
  • If the very people you had started to educate and make progress with now seem disinterested in your symptoms
  • If the people you are attempting to educate start to reply with snide remarks 
  • If those same people tune you out or flat out ignore you

You can avoid crossing that line with a few simple changes in how you approach educating.


  1. State facts, not emotions. It is easy to fall into the trap of constantly telling people how you "feel".  It may rarely be beneficial. It is better to tell what the symptoms may be and how they may affect you, and leave it at that.  Let them draw their own conclusions on how they should react to it.
  2. Avoid trying to do your education DURING an attack. This one should be obvious. This is your time to endure the vertigo and nausea, not be a poster child for Meniere's disease.  Tell them you just need to get through this attack and that you will explain it when you are better.
  3. Be realistic in your expectations.  There is no true way for anyone to understand what we are going through, unless they also are going through the same thing. To expect someone to completely understand is not realistic.
  4. Seek empathy, not sympathy.  I would much rather have someone truly care about what I am dealing with, not fawn over me like I am helpless.  This disease is bad enough on it's own, I don't need babying.
  5. Be educated about the symptoms and treatments, legitimate treatments, that work. You will be much more prepared to answer questions intelligently if you know as much as possible yourself.
With a well thought out game plan in place before you need to use it, you will be able to educate the people around you on all aspects of Meniere's disease.

'Til next time

Dennis

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


Thursday, June 11, 2015

My guest blog for Cochlear Americas "The Wire"

A journey from hearing, to deaf, to hearing

Dennis Stelling shares his experience with Meniere’s dieases and cochlear implants.

1
Dr. Colin Driscoll and myself
I was born with normal hearing and until my 20’s I heard perfectly from both of my ears. In 1992, at the age of 27, I suffered the first of many vertigo attacks. Along with the vertigo I also experienced fluctuating hearing loss which would return to normal following the attacks. It was like riding a roller coaster without being prepared to. Along with the vertigo I had constant and permanent tinnitus, and varying degrees of aural fullness specific to my left ear. It got to the point that I was sent to a specialist who diagnosed me with having left sided Meniere’s disease. During the next 2 years my hearing got progressively worse, as did the vertigo attacks. It was at an appointment sometime in 1995 that the ENT decided it was time to do something drastic about my vertigo and we decided it was time to use intra-tympanic Gentamicin to attempt to stop the attacks. The good news was it worked! The bad news was the unfortunate side effect that left me profoundly deaf on my left side. I had no usable hearing at all, even with a hearing aide.
As luck would have it, in 2005 I was diagnosed with Meniere’s disease in my right ear as well. Fortunately the symptoms were nothing like with the left ear and I continued to have functioning hearing on one side until 2013.
In the summer of 2013, my Meniere’s symptoms returned with vengeance and with it I also experienced a very rapid deterioration in the hearing on my right side. During a visit to my ENT for my Meniere’s disease I asked if there was anything that could be done for my hearing loss. I knew Cochlear implants existed but I honestly knew very little about them. What I did know is that Meniere’s destroys hearing in a different way than typical hearing loss. For that reason, even though I asked, I truthfully expect to hear there was nothing that could be done for my loss and I would need to learn to live with it.
Much to my surprise, Dr. Driscoll immediately said I would be an excellent candidate for an implant.
2
Me with Jim Patrick, Chief Scientist for Cochlear Ltd.
We decided that it would be best to implant my left side first. What a whirlwind of events! I asked about an implant in June of 2013 and had the implant surgery on August 22, 2013. I was overwhelmed to say the least.
Activation day was amazing! With the push of a button on the keyboard, I was back! I did not cry as so often is seen in the A-day videos, but I certainly had a grin on my face. Pre-implant I was at 0%, yes ZERO, words and sentences in my left ear, and the second day post A-day, I was at 60%.
Dr. Driscoll said he wanted to wait and see where the right ear “bottomed out” before considering going bilateral. It didn’t take long. By December of 2014, after trying a hearing aid, he asked if I thought it was time. I still had some hope of my hearing returning, he was not as optimistic and felt I was there. On April 8th 2015 I was implanted on my right side and activated on April 29th, 2015.
I know my first A-day is not what is typical; to have immediate understanding and comprehension, so I once again wasn’t expecting those kinds of results. I am truly blessed that I did indeed have the exact same response. Even when the audiologist covered her mouth with a paper, I heard and understood her.
I nearly cried at this one. It was the first time in 20+ years that I had 2 fully functioning ears. My doctor is a huge proponent of bilateral implantation. After having two implants for just a short time I can understand why. One is amazing; two put it over the top. My volume is just incredible. I hear better in noise. I hear sounds, IN STEREO!
Due to some of the other effects of Meniere’s disease I decided to change careers in the fall of 2014. I went from being a dairy farmer to being a tax preparer. I would not have been able to even consider doing that type of human interaction work without my first implant. The career change is also why I delayed the second implant until the end of the tax season. I also unsuccessfully ran for a position on a corporate board of directors. Again, something I would not have considered 2 short years ago.
I had the privilege of attending Celebration 2015 and purchased the mini mic while there. I ordered the other wireless accessories with my new kit. The mini mic came in very handy for the rest of the tax season. I would just give it to the client and we could have our own personal conversation. I am, for the first time in a long time, enjoying using the phone again thanks to the phone clip. I even used it, just a bit over a week post A-day number 2, for a call over an hour long, for training to be a Cochlear volunteer. I am not afraid of the phone anymore! The TV streamer also works well. Though I am not much of a TV watcher, it is nice to understand it again.
On the Second A-day I was also given SCAN on both processors. A bit unusual so soon after activation but then so were my results. It is nice to not fiddle with the remote as much.
I am so glad I asked about solutions, and incredibly grateful for the technology to give me back the hearing I had lost!

Thursday, June 4, 2015

Slowly deconstructing my former life


It's been a rough couple of weeks.

If you read (or look back and read) my post entitled "Changes" you know that I decided to leave the career that I thought would be what I did for the rest of my life.

The decision was hard, very hard. Now it's reality. Even though I sold the dairy cows last September, I didn't have to deal with the physical and visible dis assembly of the rest of the infrastructure until this spring. To watch someone else operate the land you once did is not easy.  To see people drive down the road, hauling away the equipment once used to manage the livestock, is not easy.  The ease at which others are willing to undo what I have done in the last 30 years is not a pleasant experience to deal with.

I find myself thinking I made the wrong decision. A lot.  I have plenty to do in cleaning things up and repairing things that are run down on what is left of the farm, but none of it is what I consider "productive".

I have always been a person who needed to be busy. I don't know if I would consider myself a type "A" person in that I don't need the wild adventure to satisfy me, but I need to be busy. I need to work to feel valid.  That just isn't happening like it was before. I am busy, just different. And the huge change is, when I am really physically busy, I am exhausted. I have no idea how I managed to work the way I did.  A full day of physical work results in 10 to 12 hours of sleep for me now.  I was always one who would rather be physically tired than mentally tired. Now I am both.

The obvious reality, though, is that it WAS and IS the right decision.  All it takes to remind me of this is trying to do some of the things I used to and having to quit in the middle because of becoming off balance, or feeling the start of vertigo, even if it doesn't progress to a full blown attack.  Working on what equipment we have left and needing to bend over and move something and tip into the wall because of no balance, brings the point home rather quickly.  I can do it, it just is no longer enjoyable. Now it is an all out physical challenge.

At my post Cochlear implant surgery checkup, my surgeon asked me how my balance was. I had to be honest with him and told him that simply walking down a hallway at a quick pace, then going around a corner, would cause me to "drift" all the way across the hall at times. I confessed that I do much better on flat, level surfaces than I do on uneven ground. He nodded, in an understanding way.  This is my new reality, I guess.  But I still don't like it.

It has been challenging on the Meniere's front as well.  I have not had a full blown attack, but there have been, what I would call, tremors.  I have had the "pinging" sound in my right ear that usually means the start of an attack, followed by very brief feelings of vertigo, or falling, then it goes away.  I am having issues looking at a computer screen for any length of time. My eyes seem to be doing funny things after prolonged screen scrolling. My new smart phone, while great for talking, is giving me issues while using it for texts and the web. Scrolling issues again.  I even notice, on long drives, I get eye fatigue and inability to focus.

What this all means, I don't know. I just know there is no going back to my old life anymore.  I look longingly at the tractors doing fieldwork, I look at empty dairy farms, wanting to fill them with cows. I just know I would pay a dear price if I followed through on those thoughts.

I have purchased some livestock for the acres I have left, but it isn't the same. I am looking for opportunities to try new things, it just means I have to change my thought pattern about how.  It means that I will rely on others to do the "work", more than likely.  Somehow, it just doesn't feel like work if I am not the one doing it.

'Til next time

Dennis

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