Thursday, July 30, 2015

Milestones

50. A seemingly insignificant number, unless that is the age you are turning this weekend.

I used to sit and marvel at all the changes that centurians and super centurians had witnessed in their life. When they were born there were no cars, phones, televisions, indoor plumbing, central air, heat was wood.

In the last 50 years the changes may not have been as visible, but there still have been some major events. A man walked on the moon, telephones, cell phones, smart phones,  computers that used to take up entire rooms, now one with that same power sits on your lap. The American landscape has gone from an agrarian one to a suburban one.  Jobs are now more "white collar" than "blue collar".  Educations that ended often after eigth grade, now extend well into graduate school.

I may argue that all of those changes have not been for the better.

I also look back at my life and choices in the past 50 years and realize that I really did not always make the best ones, or the right ones. I have also realized that no one does. No one really has it all put together as some appear to. We really are all just "winging it" in the sense that all of our plans, all our dreams, can be completely for naught by the nature of life itself.

And that's OK. That is what makes life interesting.

We really aren't in control of our life anyway. Life happens.

As I turn 50, I also realize that I have now had Meniere's disease for nearly half of my life.  And guess what? I am still alive.  The disease is not going to kill me, but it has changed me.

I am more willing to reach out to others struggling with the same issues I face. More empathy for those in need. More understanding of what it is like to have an invisible illness and disability.

I am still me. I do not expect people to fawn over me, just understand.  I do not seek attention, but am willing to talk, if you ask.  I still like my alone time and that does not mean I am struggling. That is just who I am.

My beliefs haven't changed, nor my faith. I am an unapologetic Christian. Not the political christian you see clogging up the news feeds, but one who realizes where his strength comes from, and where to go when he fails. One who belives that one should "remove the plank from his own eye" before "removing the speck from his brother's".

50 years. That's a long time of grace, and change.  I am incredibly thankful for many of the changes as it pertains to my disease.  Incredibly grateful to have a world renown clinic-basically in my back yard. I am thankful that one of the top rated ENT doctors in the country works at that clinic and is my physician.  I am thankful, no beyond thankful for a man in Australia who had a dream that one day he would be able to make people like his deaf father, hear again. I am thankful that the technology is so successful, both for others and myself.

And I am thankful for all of you who take the time to read these entries in my blog. I don't really know why I started writing it, I just felt I had some knowledge to share.  As I type this entry, it is very likely that the number of reads my blog has had will top 10,000. That is just mind boggling.  It is also inspiring and humbling as I try to keep content fresh and interesting.......and coming.

I know my life is not over and I have many years left. There will be ups and downs.  There will be times where I struggle with Meniere's and times I will forget I have it.  I just know it is my desire to enjoy it to the fullest potential that I have. and I encourage you all to do the same.  Your life is not over from this disease. Go out and show that to the world!

And if you have a moment on August 1st, eat a piece of cake for my birthday.

'Til next time

Dennis

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


Friday, July 24, 2015

You have to take the bad with the good sometimes

It has been an interesting period of time recently.  I sit here and look at the positives that have been taking place. A fellow blogger seems to have struck gold with his blogs. A petition to rasie awareness has generated thousands of signatures and has been sent off to a recording star. More people are coming forward, it seems, to put a public eye on our illness. Research and potential links are being reported weekly, if not more often.

And with all the positives you also have to deal with the negatives.

An actress needs to miss a week of performances on Broadway. A musician is, once again, forced to stop his concert to scold his adoring fans that they are, at that very moment, part of his illness, despite being told ahead of time to not do certain things. And on my own front...............IT'S BACK!!!! maybe.

I have been diagnosed for 23 years now, and despite all the people who say they have triggers, I have none.  I have never been affected by weather, foods, work, stress, you name it. If it affects someone else, it probably means nothing to me.

That is why it can be so frustrating. I change or don't change something and it may or may not make a difference either way.

This summer has been actually kind of nice. I am not working full time and, although I am not accomplishing much on my "honey do" list, I have been able to spend a good deal of time with my kids.

And that is where the bad comes in. Two weeks ago while taking my 2 youger children to summer camps I am greeted with a sudden attack of vertigo while driving.  Not a terrible attack, but I round a corner and the road keeps moving. Another reason to be thankful I live in rural America. Hit the brakes and wait. Half way between town and home. Either direction is not going to be fun. So you stop along the gravel backroad that for some reason you decided to take that morning rather than the main blacktop. No traffic. YES!

As time passed I decided I could make it to town and at least get the kids to their camps. At that point I could just sleep, if I needed to.

Then comes yesterday............

After working outside trimming tall grass around our property, which I have been doing all summer, attack number 2 in two weeks.  This one was more like the ones I would like to forget. Room actually spun this time, briefly, but the nausea lasted for a couple of hours. Yippee!

And today.............

Number 2 in 2 days and three in 2 weeks. Yup, they still stink.

So, what does this all mean? Your guess is as good as mine.  Nothing changed.

The only thing that maybe could be linked, and it is a stretch, is a severe storm went through after the first attack, but the next morning my hearing was just all messed up. One ear brutally loud, the other not so much. And they have stayed that way.

Yes, even with my cochlear implants my hearing changes.

Related? Who knows.

So here I am back on the edge again. Time to re-evalute what's been going on. Time to attempt to not let it work on my psyche again. Time to rethink my plans for the rest of the summer.

At least, if they are back, this time around I am not responsible for keeping a business running. At least there should be less outside stress working on me, allowing me to focus on getting through them without other stressors.

And then again, they may just go away.........again......all on their own.

'Til next time

Dennis

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

Friday, July 17, 2015

Building a community

Birds of a feather flock together.

Humans do, also.  You see it all around. Shared interests, jobs, hobbies, even illnesses. Why else do you see hundreds, if not thousands, of people get together to raise funds for a good cause? If you have no personal connection, you will just stay home.

Calling these groups communities would garner a "fog horn" from a popular radio program here in the Midwest, but what else do you call a group of people who share so much in common?  Support groups offers such a negative connotation. One of people who don't know how to cope.  What I see in people who share an illness is not weakness, but strength.

Yes, there may be support and comfort, but there is also encouragement and success.

Who usually leads walks for illnesses? Survivors!  Success stories build hope.

The community I find myself in is not one I sought out, nor is it one that, for a long time, I took advantage of. It's not a formal group. Many I have never met, but we are there for each other.

We share, learn, lean, encourage, correct, and empathize.  We can explain what we go through, but unless you experience it for yourself, you can't really understand.

The closest I have ever come to explaining what this is like, is to tell people it's like living with a hangover, WITHOUT the fun of getting drunk.

I have personally met a few people who share my discomfort. One is a man who was forced to give up his teaching career as a band instructor because he went deaf. He is bilateral, and you can tell by his gait that he has some pretty severe balance issues.  Another is a family friend who is a building construction inspector who can no longer climb on roofs to inspect, but has to do it from a secure hold on the ladder, while climbing it very slowly.  A third is a lady that I did not know, who just grabbed my arm because she heard I had it and just starting talking. She told of having to give up her teaching career, and a second career in a sales position, and driving for four years. Of being told, on a scale from 1 to 100, with 100 being the worst case her doctor had seen, she was a 98. She told me the only reason she was out of bed, literally, was because the doctors finally decided to do a labyrinthectomy to give her her  life back.

I have heard of others in my area, but either they do not talk about it, or I have yet to meet them.

It is good to put a face on an invisible disease. It is good to talk about it. It has been a huge release for me.

'Til next time

Dennis

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

Friday, July 10, 2015

Vestibular Rehabilitation Therapy (VRT)- Remolding your balance system

A human's balance is a three legged stool. While most of your balance function can be found in your semi- circular canals in the inner ear, the eyes and the muscles  play an important part as well.  A person can function with the loss of  the vestibular system by compensating with the eyes and feet.

It is also an interesting fact that, if your balance organ is damaged, it is very "plastic" and can be retrained to help compensate. This is most likely done through Vestibular Rehabilitation Therapy (VRT).

VRT is a specific set of exercises performed under the guidance of a Physical Therapist, which has been deemed medically necessary by a Dr.  The patient is generally taught the exercises and then is left to do them on his or her own, with periodic sessions with the therapist to determine the effectiveness and the need for more advanced or different ones.

Here is a link explaining VRT:  http://vestibular.org/understanding-vestibular-disorder/treatment/treatment-detail-page

The exercises themselves are not all that physically demanding, but they do require caution.  Many of them require you to move or stand in a way that, if your balance is compromised, there is a risk of falling. Unless you take precautions, or throw caution to the wind, it is best to have someone around when doing them.

I was first introduced to VRT following my Gent injections in the 1990's on a formal basis. The Dr. prescribed them as a way to strengthen my remaining balance in my left ear.  I don't remember all of them, but ones I do remember consisted of me holding on to the back of a chair a turning my head from side to side. First  with my eyes open, then with them closed. The chair was my safety net.  Another had me standing on a 4" thick piece of foam and doing the same thing, turning my head, eyes open then closed. This time, without the chair. The purpose of the foam is to remove the sensory input from your feet and force your balance system to work harder.  Being single and living alone at the time I needed to improvise for safety sake. My solution was to place the foam in a corner and allow the walls to keep me from falling to the ground.

The therapist that I was assigned to had a personal connection to the loss of balance. I do not remember the exact cause of his balance dysfunction, but I do remember him telling me how great it was for him to get back on his bicycle.  He was living proof that retraining the balance system did work and was a motivator for me.

I truthfully did not think they were helping until I started doing the ones on the foam. When I started doing them, I could not stay upright with my eyes open while turning my head. If I closed my eyes I would immediately tip into the walls. After a few weeks eyes open were easy, but I still had issues with my eyes closed.  By the time I was released from the therapist I could, for a short time, stay upright with my eyes closed.

I have always tried to do things that would naturally strengthen my balance. I got back on my bicycle. The first few days were nerve wrecking, but I got better. The more you challenge it, the better it will get.

Now that I have been told the balance in my left is is completely gone and the balance in the right is damaged, I don't know what to expect.  I still have my eyes and feet, but take one of those away and it is not pretty.

I have seen the suggestion that I may benefit from VRT once again in my medical notes.  It has not been ordered and I have not pursued it any further. I still try to find ways to challenge my balance although I do notice things that used to be easy no longer are.  I am tempted, and if I get it fixed, I may climb back on my bicycle and see what happens.  I know it won't be easy. Neither is being unstable and fearful of falling. At worst, I will find I am no longer able to. At best, it will be very beneficial.

'Til next time

Dennis

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

Thursday, July 2, 2015

Feeling poetic



'Til next time

Dennis

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