Thursday, May 18, 2017

Wow, I'm tired!

Image may contain: 1 person, standing, hat and outdoor

You may be wondering where I have been recently. Maybe not, either.

Well, I am going to tell you anyway. Life has gotten in the way of blogging.

As you can tell from the picture, I (almost) have finished up my Associates degree in Accounting. Almost, because I do have 2 general education courses to take this summer session to complete it, but I am close enough to done that the college allowed me to take part in commencement.

It's been a long two years and I will have been in school every month since August of 2015. I need a break.

I am happy with what I have accomplished and that I have been able to do this without interruption from Meniere's. When I started, that was the wild card, just like anything I start.

For 2 years I have basically put my life on hold while pursuing this degree. Two years of lots of hours to get homework done, reading done, and trips to the school. Maybe it's bragging, but I am proud of what I have accomplished. It has been a lot of work, and I was able to pull it off, graduating with high honors (over a 3.75 cumulative GPA).

While it has been a lot of work, it has been rather fun at the same time. Mental exercise is just as important as physical, and the confidence this coursework has given me has had a positive effect in my non-school life. I recently started a new part-time job in my field.

For now, part-time is fine. It gives me a chance to use my skills, give me some more experience, and prove myself to those around me. Part-time is all this place of employment had, but it also lends itself to flexibility. I still have more school ahead to complete my bachelors. I have a family. I have my tax season job. I also have Meniere's, and we know what that could mean at any time, although as time keeps moving, I am becoming more convinced that I have "burnt out". It's been a while, and I haven't missed it.

Along with all of this activity, I am still a volunteer for Cochlear Americas and have been doing as much as possible in the regard. Part of that is during the month of May they are sponsoring the #MillionEar challenge to raise awareness of hearing loss and advanced hearing solutions. The challenge isn't a lot of work and it is something we all can do. All it takes is to share a story, article, picture, etc. on social media and tag it with the #MillionEar hashtag and when they reach 2,000,000 hashtags, they donate money to 2 worthy charities in the USA. At last update, half way through May, they were at 1,083,000 and change. Join me, if you would like. You don't need to have Cochlear implants. It's all about awareness.

Now, if you'll excuse me, I have more homework to do.......

'til next time

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

Wednesday, April 19, 2017

Have you ever?

(disclaimer: This is a departure from my usual positive posts, not due my having issues currently, but rather to share that I have been there)

Have you ever spent a day holding on to the grass in your yard in an attempt to not get thrown off the planet?

Have you ever vomited so much for so long, it hurt to think about vomiting again?

Have you ever had the dim light of the daytime, shining though a blanket, scorch your eyes to tears?

Have ever squeezed your eyelids closed so tight your eyeballs hurt?

Have you ever had the sound of a light switch being turned off be painful?

Have you ever wished people would just leave you alone in your misery?

Have you ever lived in fear of something you have no control over?

Have you ever wondered, "why me?"

Have you ever wished for your old life back?

Have you ever lashed out at the ones closest to you because you didn't know what else to do?

Have you ever pushed on, in spite of being miserable, because you had no other option?

Have you ever begged to die?

I have.

'til next time


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

Tuesday, April 4, 2017

The Question
Last week at work I got "the question" from one of my co-workers. If you have read through my posts, you know I am currently on my way to an accounting degree.  I was asked "OK, so once you get your degree, are you staying on as a tax preparer here, or moving on?"

I don't blame the person. Her concerns are legitimate. Since I have come on, I have gotten some of the more challenging returns to do, and I have been marketed as the guy for business and partnership returns. These are both areas that this office never had the time for in the past. Having me on staff has made it possible to broaden the scope of the work done here. If I were to leave, it would put a crimp in the clients we have gained.

But there I something bigger at play in my life. While I openly admit I do not mind doing tax work and really have no immediate intention to leave, it is not full time.

Thus, I had no other answer for her than this. "I really am not in the position to say what my future holds. I am living my life day by day at this point. While I see potential for growth here and am not opposed to being part of the growth, if someone were to offer me an opportunity that is completely unexpected and would be foolish to not accept, I have no other option than to look at it. But for right now, I am not looking any further than getting my Associates degree in May and concerning myself with getting my bachelors, starting this fall."

I'm not sure it comforted her much.

Later that day, I had a chance to visit with a teacher at my son's school. She sort of asked me the same question. I gave her basically the same answer. I really do not know where my future is, but I expanded on it a bit. I also have to concern myself with the stress level I place myself in. A job offer I can't refuse may be one I need to refuse because, as I said to this teacher, I have been very blessed to not find myself lying on the ground with vertigo, vomiting all over for the last 3 years. I have no interest in going back there.

I'm not positive that would happen, but I really have no desire to risk it.

The night before these conversations, I had another with a woman about my being deaf in a small town. Options are limited if you can't hear anything. The resources just don't exist in a small town. If it were not for my Cochlear implants, I really have no idea what my life would be and I do know that if I did not have them, I would not be on this journey to a college degree. It is that simple.

If I weren't open to using this gift to the best of my ability for the best of my family and community at large, it really would have been pointless to even embark on the road to hearing and college.

Over simplistic? Maybe. The truth? Yes. If I were deaf, and not using CI's, my life would be much more difficult.

To be completely honest, if it were not for my Cochlear implants and the lack of attacks, I wouldn't even be able to be asked the question.

'til next time


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

Saturday, March 18, 2017

Is this the future?

While I am on the subject of my recent adventures at Celebration!, I feel the need to put a little hope out there for those of us that have had the "privilege" of having Meniere's disease steal, not only our hearing, but also a good portion, if not all, of our natural, inner ear balance function.

One of the sessions I attended was about what was coming in the future for Cochlear brand implants.

Naturally, the main thrust of the presentation was about the hearing aspects of implant technology. To be honest, some of the glimpses are pretty darn cool. Things like direct connect to IPhone with a phone app to control your processor. Or smaller, lighter processors. Or giving a recipient the ability to have their processor mapped without traveling to their audiologist. All the way to the current holy grail of implant technology, the thing affectionately code named TICI. The Totally Implanted Cochlear Implant. Yup, completely inside your head. No one would even know you have one.

Granted, the presenter (a man in charge of many of these projects- direct from Corporate headquarters in Sydney) would not, and really could not, give any kind of timeline for any of these coming out, the fact that they were mentioned means they are on the way. Sometime.

What he could say with certainty is that the N7, N8, and N9 behind the ear processors are all under development as he was speaking, as were the Kanso 2, Kanso 3, and Kanso 4. They need to be. Technology moves so fast that the rate that new, more powerful and complex processors hit development needs to be never ending.

But you know that we ( Meniere's patients) have a bigger, or additional concern: Our balance.

To tie this all together, after the presenter was done with his session, he took some questions and, of course, all of them pertained to hearing. Since the time was up for that session, I hung around for a few minutes to get a chance to talk with him. The first thing I told him was that my question was going to take him on a totally different direction from all of the other questions he had taken. I then explained why I was deaf and asked him if there was any actual research going on in the field of Vestibular implants. He replied there absolutely was, and referred me to some early work that had taken place in the state of Washington. He also mentioned that one of the presenters of a different session, Dr. Blake Papsin, was working with Cochlear Ltd in research on a vestibular implant. He mentioned that there were some significant hurdles to clear in getting one to the commercial point and that VI's were at the stage where Cochlear implants were 30 years ago.

30 years ago, CI's were in the trial stage, or just hitting the market and the long term success was unknown. That seems like an eternity, but in the world of electronics, that is a very short trip. If VI's are able to leapfrog forward due to the knowledge from CI's, development could be rapid. Or it could hit a wall.

When I thanked him for his time, I off handedly said, "I appreciate the information, even though I probably won't see any benefit in my lifetime."

"Don't rule that out", he replied

In case you were not aware, there are trials going on for a vestibular implant to replace person's missing natural balance system. Here is a link to one of the studies

'til next time


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

Sunday, March 12, 2017

It's a Small, Small World

My first trip to Disney World in Orlando, Florida, happened when I was a junior in High School. My oldest sister's first teaching job out of college was in Jacksonville, FL and my parents decided to take the family to visit her over labor day weekend, if memory serves my correctly.

Of course, when you travel like this, and we did it rarely, you needed to hit the sights, so we drove from Jacksonville down to Orlando in a rented station wagon.

Again, if memory serves correctly, the only ride that we took while there was "It's a small world". I have no recollection of how long it took to get through the ride, but I know it took a long time for the song to get out of my head after we left Disney, and Florida. It's one of those earworms that hangs on in your head forever.

My apologies for giving you that earworm. I know I did.

This post isn't about earworms, though. It is about how small of a world we live in. In our everyday lives, we really live in a small world. Chance encounters with people we have never met before, but that have some connection to us or where we live or grew up prove that point. Then when you add in the fact that some have chronic illnesses, or some other limiting thing in our life, the world becomes even smaller. And really, in unexpected ways.

The third weekend in February, I spent 5 days in Orlando, at a Disney resort, for Cochlear Americas Celebration! 2017. While there, those of us with Cochlear implants, or baha technology, have the chance to get our processors "cleaned and checked" by a team of professionals within the Cochlear organization. This is a free service that they offer at all Celebrations. It gives them a chance to look at your equipment and recommend, if they can't do it on site, maintenance on your processor.

As  I did 2 years ago at Celebration, I signed up for the clean and check. This time with two processors that I use every day and two backups. They were also demonstrating their newest processor for those that wanted to test drive it. I did not. Mine are new enough that I am very satisfied with what I have, and I am a few years from being eligible for an upgrade to a new processor.

When it was my turn to go in to the clean & check room, they directed me to a table with one of Cochlear Americas clinical audiologists. I gave her the first CI processor and she started looking it over. She asked me when I was implanted. Then where. When I told her, Mayo Clinic-Rochester, MN, She stopped what she was doing and said "My dad started the cochlear implant program at Mayo!"

I said, yeah, Dr. #####! And I looked at her name tag. Same last name. But here is where it gets to be a small world. Although her father started the CI program, he did not do my implants. He had long since retired. But, what he did do was diagnose, and treat, my Meniere's disease! 24 1/2 years after being diagnosed with Meniere's disease, the disease that would steal my hearing, I am sitting there having my Cochlear implant processors cleaned and checked by the daughter of the man that diagnosed me!

It is a small, small world!

Especially in the world of audiology and Meniere's disease.

'til next time


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

Sunday, March 5, 2017

Definitely not how this year was planned

Hard to believe that the first quarter of 2017 is almost over. When the new year starts, many people partake in the making of New Year's resolutions. Mine certainly would not have looked like what has happened so far, if I would have made any.

Most of the these resolutions are made in an effort to improve one's life over the next year. Things like lose weight, stop smoking, stop drinking, find a mate, get married, etc. None of them involve a 6 day stay in a hospital. Yet that is where I found myself the month of January.

It becomes easy to not take care of yourself over time and then find yourself in need of a medical re-boot. It also is quite likely that a person will experience something that they never saw coming. And that is exactly what happened with me.

Now, I 'm pretty confident that you are thinking this has to do with the loveliness of Meniere's, but it doesn't. But it does have to do with my life, and really, the fact I am still living.

As usually happens in winter, there are bugs that go around. Some worse than others. I thought I had one at the beginning of January. Cough, chills, tired. It had to be a virus, so I blew it off. It will pass.

As this winter had been progressing, Tuesday had become the day of the week for winter weather. This year was more ice than snow, but if it came, it was on a Tuesday. Tuesday, January 10th was no exception with a round of freezing rain. As has happened more times than I care to count, my wife ended up staying at work and pulling extra shifts. I guess it is better than having to be concerned about her driving home on the ice. Staying safe is a good option. It also gives the road crews a chance to get out and clear or sand the roads to make travel safe. Since our driveway is a bit, well, quite a bit, of a slope, I figure I should get out and sand it before she headed home so she could get home.

So out I went and I grabbed a bag of barn lime to sand the drive. As I carried the 50 pound bag, I developed intense tightness in my chest and by the time I got to where I needed to sand, it felt like the bag was on my chest after I set it on the ground. Then I started coughing. Remember the virus thing? It had to be a virus, so I continued to sand. When I finished, I broke into a sweat and was extremely tired.

The next morning I couldn't breathe after getting dressed and decided a trip to the Dr. was in order to confirm the virus thing, or maybe bronchitis, or at worst, pneumonia. My primary care thought otherwise and ordered a full work-up of my heart. Everything came back negative until the very last test. This was a test to see if I was at risk for blood clots in the lungs.

Are you kidding me? Blood clots in my lungs?

After the radiologist confirmed that was indeed what was going on, I found myself a resident of the local hospital for the next 6 days, and I find myself on blood thinners for six months, minimum.

Being the information junkie I am, I looked up pulmonary embolisms and was greeted with the statement that 33% do not survive without immediate medical attention. I waited 24 hours. Talk about a reality check.

As the week in the hospital went on, I learned more about the clots. They seemed to have started in my calf. I thought I had a cramp, I guess it was the clots. I didn't just have one clot in one lung, I had several in both lungs, and they were pretty big. On my follow up with my primary, I got a big hug and was told I should be grateful I was still here.

Trust me, I am. Yet at the same time, I never really felt as though I was in a life threatening situation. I kept up on all of my homework for school while recuperating, I started working immediately after release. Really, other than being told I had them, and the one day I had trouble breathing, I did not feel like anything was wrong.

After release, my next concern was a trip I had planned to Cochlear Americas Celebration! 2017 in Orlando. I had resolved that if I got medical clearance, I would go and have a blast, but if I could not go, that was the way it was. My health was more important. Thankfully, I was cleared to travel. And I did have a blast. This was my second Celebration, and it was much more relaxed for me.

The thing about these gatherings of 1000 or so people who have benefited from Cochlear implant technology, is that you laugh until your face hurts, then you meet someone new and hear their story and cry with them, both tears of joy and tears of empathy. Then you laugh with them until your face hurts. It is an emotional 3 days surrounded by people who become your lifelong friends, and by staff that are more than employees for the manufacturer, but also friends.

And this, finally, leads to the picture. On the last day of the Celebration, at the closing session, they honor a few of the recipients from the previous year. This year they awarded 8 young ladies scholarships. They awarded a couple with the Lifetime Volunteer Achievement award, and they awarded me with the volunteer of the year award.

Not in my wildest dreams would I have ever thought 2017 would start out like this.

I'm thankful I am here to see it, and how the rest of 2017 goes.

'til next time


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

Saturday, February 11, 2017

It's not about me

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

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

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

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

Life happens.

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

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

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

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

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

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

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

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

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

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

And this leads me to February 9th.

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

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

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

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

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

'til next time


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