Choices

Choices. 

It is what life is all about. 

Humans have the innate desire to make choices. In a day we make thousands of choices. Some major, some minor. Some we don’t consciously think about, some are pivotal choices that change our lives. Some choices we make create a ripple that effect not only ourselves, but those that touch our lives. 

Generally the options for Meniere’s Disease are pharmaceutical interventions (anti-emetics, diuretics, anti-anxiety), diet changes (low-salt, raw, vegan), conservative surgical procedures (sac enhancements, aeration), and destructive surgical procedures (vestibular nerve section – brain surgery, removal of inner ear completely – deafness). Some work for some and others do not. 

Some have made minor differences for me and others have not. Following my second conservative surgery and the trouble I am still having I have thought a lot about destructive procedures. Doing a vestibular nerve section is brain surgery. Terrifying right. Small chance of keeping your hearing. 

Choices. 

Matt and I went to dinner. It wasn’t the most appropriate time to discuss such things but I had a burning desire to know how he felt about me potentially having to make the choice between Meniere’s Disease and being deaf. In true Matt fashion he looked me dead in the eye and said that he would support any decision that I made. 

I almost fell off my chair. There was no hesitation in his voice. There was no sadness in his eyes. No anger. No selfishness. I immediately backtracked thinking he must have heard me wrong. I had just asked him how he would feel about me, making the choice to be deaf. 

Choices.

He could have chose to talk me out of even thinking to make that choice. He could have made the choice to beat around the bush. 

I told him my fears. That people would question me, judge me. Why would you make a choice to be deaf? 

Choices. 

For me, choosing to be deaf wasn’t about sacrificing a sense. It was choosing to have a life. Choosing to be deaf wasn’t about choosing to be deaf at all. It was me choosing to not have Meniere’s Disease anymore. 

It isn’t a decision that one should jump into. One that I would not jump into. But it is a choice. A choice that is on the table for everyone with Meniere’s Disease who has exhausted all other options and is left with a choice. 

This choice comes with a ripple effect. 

99 times out of 100 I would give just about anything to not have Meniere’s Disease anymore. 

I may have to make a choice to have another surgery in a few months. Not one of this caliber, despite the fact that all ear surgeries come with the possibility of lost hearing. We all have to make choices. To not make them would make us less human. Chances are high I would make that choice to do another surgery. If another surgery can offer relief I will take that. 

All of you Meniere’s sufferers out there have options, you have choices. 

Update

What is your five year plan? 

Isn’t that a silly question? For someone with Meniere’s Disease, asking this question is… what, comical? I tend to think so. I can’t tell you my five day plan, let alone five years. 

It has been too long since I have last updated my followers. So here it goes. 

July 3rd – July 7th I traveled to Indiana for a family reunion with my partner and his family. Thinking about it brings up a visceral reaction for me. I have never met people who are more loving and accepting then both sides of his family. I have been with him for seven years. I have never met anyone in his family other than his parents and his brothers. This was a big deal. 

I was terrified of my Meniere’s during the long car ride there and back and just generally terrified I would be sick the whole time. I had my moments, but overall the trip was a major success. 

Just prior to the trip I ended my physical therapy. I had mixed feelings but felt comfortable with continuing my exercises at home. I continued to have better days than other. 

August was terrible for weather here in far central eastern Wisconsin. It was like a jungle. High humidity and high temperatures. My ears are my barometer and I was not a happy camper throughout the month of August. Sick for days with little relief even with the air conditioning blasting in our apartment. September blew in brutal at first but has calmed over the last few days. 

I was minding my own business several nights ago and the monster crept up and bit me hard. Watching TV at midnight on a Sunday and the ringing started in my right ear (surgical ear from November 2007), increasing intensity. If you have Meniere’s you know how your body reacts to the beginning of some type of attack. Cold sweat, shaking in the hands, can’t stop swallowing, tears breaching the barrier between your lids and your cheeks. Suddenly the ringing began to abate and the numbing began. Flash to the Dentist’s office getting a cavity filled and you are all numbed up. You can’t feel your mouth, but when you touch your cheek you can feel yourself touching it. Flash back to me wondering what the hell is happening. The numbness began at my ear and began to spread. Seeming to swallow each millimeter of skin like goosebumps. I was tempted to wake Matt up and told myself to give it a minute. I went to the mirror, really thinking that my ear had fallen off. Nope still there. Still feels like it has somehow detached from my head. 

With Meniere’s you are always telling yourself to give it time. My first thought was to go to the ER. My second thought was, I will have to tell another half a dozen people what Meniere’s is, while panicking, Something some of you may not know, the majority of medical personnel I have met (who are not Meniere’s specialists) do NOT know what Meniere’s Disease is, or have only read about it in medical school. 

I decided against it. I would wait it out. Be a solider. Don’t fly off the handle. I remember looking at the clock and it was 3:30 a.m. Tick. Tock. Tick. Tock. 

Matt wakes up at 6:00 a.m. and I was still awake. He knew by the look on my face something was going on. We saw my GP, who was concerned and told me to see Dr. Paparella. 

Appointment. Check. 

For the past month I have been very set on discussing destructive procedures. Killing off my ear completely. Which is the only cure for Meniere’s. Tough pill to swallow isn’t it? Let me reiterate, the only guaranteed cure for Meniere’s Disease is deafness. If you are reading these postings from newest to oldest then you have already read more about this. Very emotional. 

Dr. Paparella believes that I may have scar tissue in my right ear causing symptoms. It would require another sac enhancement. I am keeping a journal – or Dizzy Diary as I like to call it. We hope to pinpoint if there is an ear that is causing more issues than the other and decide on the next step. 

As I always say, to all of those who are struggling out there with Meniere’s Disease you are not alone. We are here with you. Please feel free to contact me anytime with questions.