To give anything less than your best is to sacrifice the gift.
-Steve Prefontaine
Make it simple, but significant.
- Don Draper

Sunday, April 2, 2017

My Life With Meniere's


​​Last week someone I talk to all the time saw me for the first time with a cane and was rightfully confused. I figured why not use this as an excuse to wake up my sleepy little blog and share my story of a pesky little sidekick of mine called Meniere's Disease.

I will start by saying it is not contagious. If you stood up too fast and got lightheaded, no, you don't have it. No, laying in some funky contorted manner on my bed with my head hanging off isn't going to cure it. Although it might make me fall off the bed and/or vomit. And everyone that does have it will have a completely different story and experience. It's a charming thing, this Meniere's Disease!

Back in 2003 I was working on a turntable every day. A spinning turntable, navigating myself through tons of guests getting in and out of rafts, and flowing water next to me. This had been my norm for a couple of years and was never an issue, but suddenly it was really throwing me off. I found myself starting to walk a little farther away from the water so I wouldn't accidentally fall in and cause an E-Stop. Guests would be quite angry if their ride experience was halted because some dizzy blond fell into the Chakranadi River! I managed to deal with it, expecting it to just pass, and was soon saying Namaste to my home in Anandapur and moving backstage to the Labor Office at Disney's Animal Kingdom.

Now at a desk, I figured these strange feelings of uneasiness were sure to be gone. I was so wrong. In fact, I think working in a quieter, non-rotating area actually helped me see how much really was going on. I'd get so dizzy I would have to hold onto my desk or chair for support. As the new girl, when coworkers asked me to lunch I accepted the offer and then felt so uncomfortable at the table when I had to use my hand to casually hold my head upright because I felt I was tipping over. I had no idea what the heck was going on. At my desk one time a fellow cast member asked why I was ignoring my phone. What?? My phone was ringing? Sure enough I had a couple of missed calls. I had been sitting there the entire time and couldn't even hear my phone ring. At this point I knew I needed to call the doctor.

First I went to the world's worst family doctor. After this visit I never went there again, thank goodness. He referred me to get a CT scan. Insurance denied that and said I needed to see a neurologist first and get a referral. So back to Celebration Hospital I went, this time to meet with a neurologist that I really liked. He was able to trigger all of my crazy symptoms in no time at all and actually listened to me! Soon I was getting an MRI done on my head. Very strange to me, I had to go actually pick up the results and take them to the doctor. I have them all still. So if you want to see my brain, my eyes, the enlarged part of my brain in the back of my head, come on over and take a gander! From there I was referred to the Ear, Nose and Throat doctor. Those visits stressed me a little more. It wasn't at the nice hospital I like, it was crowded, and the exam itself was ... I don't know. I had to close my eyes and march in place once. Put yourself in a clock... if I started facing 12, by the time I was done I was facing 4 o'clock. The former marching band girl in me was mortified. I was certain I wasn't moving, so to open my eyes and see what happened was a little disconcerting. This doctor had me get some blood work done and a hearing test. Here is my issue with that... my hearing isn't always bad. It never fails, when I have had my hearing tests it is on a good day. Not once have I been having Meniere's issues when a test is done, so still I look like I have great hearing. Oops, I'm jumping ahead....

One of the last major things I had done was in July 2004. My mom and Grandpa came to visit me for my mom's birthday. One of her vacation mornings was spent going with me to downtown Orlando where I had to go through a slew of tests. I had things attached to my face to monitor everything going on with me. I was in a dark room (or was it dark because my eyes were closed. I can't remember!) and put through all sorts of sensory tests. Hot and cold air in my ears. Noises. Moving. It was probably at least an hour long and I wasn't allowed to drive after that. So my mom got to be my chaperone and get me home safely. Who would have expected that her being my driver would become more and more frequent over the years due to this nonsense.

Since all of that went down I have been given a variety of medications. In Florida, the medicine they gave me would make me sleep for almost an entire day. This isn't practical! I did finally get that CT scan done, but because of the hurricanes that kept coming through Orlando I was never able to go pick them up and in September I was moving back to Oregon. My grandpa was a pharmacist and suggested I only take half of the medication, so I could feel relief but not sleep all day. When I returned to my normal family doctor in Oregon he was great and gave me a lower dosage, which I still continued to only take half of. Some medications were good. Some weren't. When we started trying to create Katura I stopped all medications. I've gotten really good at managing Meniere's Disease without any, and I hope to just stay off the medicine as long as I can. I still pass hearing tests, and haven't even gone to the Ear/Nose/Throat doctor in a couple of years. In Vitro Fertilization ate up all of my time and I just decided to take a break from doctors for a while!

So how does Meniere's Disease affect me? If I say I'm having a Meniere's Day what does that mean? Well, it falls under the category of invisible illness, so I'm sure it seems made up. Ugh, if only! The obvious thing is vertigo. It took a long time to let my ego come to terms with the fact that having a cane would be helpful. I almost always have it with me, folded in my bag, so when I do need it I am ready. Mine is blue with flowers! My hearing is so touching. Some times I CAN'T hear. Sometimes tiny little noises that nobody hears feel like they are incredibly loud to me and they hurt. My ears hurt a lot, and I realized I unintentionally pull on them to relieve pressure when it gets bad. Talking will get difficult, sometimes causing me to stutter or even forget what words I'm trying to say. Um, example ... maybe I'll forget "refrigerator" and I end up having to say "that thing, it's big, and cold with food in it". The room spinning thing gets old. I have actually fallen out of bed from that before, thankfully onto carpet! Another thing that causes me so much anxiety is being in a car. If my Meniere's is doing anything at all to me it will throw off my depth perception. Being a passenger absolutely terrifies me. At this point I do hate to travel, unless I'm driving. But I can only drive if I'm having a good day, which means I'm always a passenger on bad days and get so scared I end up crying. I HATE IT!!

I'm sure there are more things, but at this point I am so used to them. Ringing in the ears!!! If the ringing STOPS then I freak out because I think I'm officially 100% deaf. When it is completely quiet in my house I am very away of the ringing, so I almost always have something on to make noise and help me forget about it. It's like the way you feel after a loud concert, but that's pretty much my standard every day.

How do I fix it? I don't. There is no cure. Many people with this end up getting hearing aids. I'm lucky in that my hearing is doing a good job of staying with me. Where some having that as their big issue, the major vertigo is where I have mine. It is something that tends to progress, so in a few years my story could be very different. Hopefully not. For some it kind of goes away I've read, or hibernates as I call it. I've felt that mine has hibernated before. Bring on some major stress or crazy weather, and you'll be sure to see me whipping out my cane. Why am I part time at work? The biggest reason is because of this! Stress at work got to be too much, I was always sick and I just couldn't do it all anymore. But in the end that worked out, and I get more time with my little girl!

And that's all I have to say about that .... for now! Any questions? I'm totally down for answering! I've been dealing with this for 14 years, so it's just normal for me now. I can hardly remember life without it at this point!


Just for fun, here I am PRE-Meniere's Disease standing at Tiger Face Falls before the flume has started to fill with water!

And I feel I should close with this.... Namaste! Welcome to Kali Rapids Expeditions, the number one rafting company in Anandapur where you WILL get wet and possibly SOAKED!

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