A bit of Independence...

Yesterday was emotional for me. I kept thinking about the idea of independence and what it means to be free. It's a glorious, miraculous, beautiful, scary thing to be free. But I am not. Not truly. Not anymore.

Some of my fondest memories are of driving home from college for long weekends and holidays. That six-hour road trip meant hours of quiet reflection peppered with my favorite music and stops along I-35. A girl and her car. Nothing better.

Even now, after 14 years of marriage, my hubby wubs knows I need the freedom to hop in the car, go to a bookstore, a friend's house, a coffee bar, or even - up until recently - out of town.

The 30-minute trek to work every day is not easy. I am acutely aware of each mile that separates me from safety. With Meniere's Disease, driving can be scary. Attacks sometimes come suddenly. A once-clear road appears blurry and the traffic melds into a kaleidoscopic crayon soup on blacktop.

Thank God, my attacks have come in "convenient" locations: work, home, a friend's house, in public but surrounded by friends. I haven't experienced an attack while driving. Yet.

That "yet" shackles me to fear, keeps me from true freedom. No key exists to release me.

A couple of weeks ago my mom was experiencing stomach pain - bad enough she had my dad take her to the ER. She's a tough, strong woman, so I knew the pain was excruciating. Doctors ran tests and found tumors on her ovaries. They loaded her with hydrocodone, sent her home, and scheduled her for a hysterctomy. Like most of the women in my family, she is allergic to hydrocodone. After dry-heaving for several hours (and exacerbating the pain), mom had dad take her back to the ER. The hospital admitted her and rehydrated her, then took her into surgery. When the docs opened her, they found cancer on her ovaries. Two of the tumors had burst spraying cancer into her abdomen. After tests, the oncologist said it is stage three ovarian cancer.

She sees her doctor today for the four-week post-surgery check-up. Tomorrow she gets her portacath. Monday she starts chemo.

I want to be there. Would give anything to be there. But I can't go. It's a 4 1/2 hour drive and one I can't make alone.

Independence: America = 1; Me = 0.

Meniere's Monday - A bit of blah

Today is definitely not a good ear day for me. Buzzing, fullness, pressure, eyes burning, headache, distortion, and...wait for it...dizziness. Woo-hoo.

Yeah - it feels like this...

I am praying that all of these symptoms are a result of being gone for the weekend (in a higher altitude) and not a precursor to an attack. I don't have time for an attack. Nor the patience.

So this is it. Short. Simple. Not sweet.

Until tomorrow...

Meniere's Monday - A bit of history

It's Monday. Yes - the dreaded beginning of the work week. No fear, gang. We can get through this.

Since I have chosen to use Monday as the day to update my Meniere's condition, I thought this might be a good time to let you know a bit about the hard-to-explain, difficult-to-diagnose, ridiculous-to-treat, all-consuming, unpredicatable disease named after a French doctor, Prosper Meniere. In the late 1800s he concluded that vertigo stems from issues in the inner ear. Essentially, the inner ear produces excessive amounts of fluid, causing a host of annoying symptoms. Since Dr. Meniere's initial discovery, doctors, scientists, researchers, and pharmaceutical companies have tried - without success - to treat this disease.

One of the biggest issues with treating Meniere's is that it affects each individual differently. Some people experience mild symptoms while others suffer daily and have to relinquish anything resembling a normal lifestyle - including driving. Imagine a dizzy person on the road... Not pretty.

What are the symptoms, you ask? (I'm assuming, of course, that you asked...)
1. Dizziness: This happens if I stand too quickly, turn my head in a certain way, see flashing lights or flickers, get too hot, am in a crowded space, ride as a passenger, fly in an airplane (as opposed to using my own wings), am in high altitudes, exercise vigorously, have a cold, or sit/stand too high.
2. Ringing in the ears: Mine is intermittent and ranges from a high-pitched squeal to a guttural train sound. I get this more frequently at night or when my ears are full.
3. Hearing loss: This fluctuates and is annoying. Some days, I can hear just fine. Other days are dreadful and I can't hear a thing. Then there are the days when things are too loud. I carry ear plugs, have a hard time listening to music in the car, can't sit in noisy restaurants, and have issues with loud voices. BUT - I use the closed captioning on my TV and prefer texting to talking on the phone because I can't understand the words.
     a. Distortion: This is a byproduct of the hearing loss. To me it sounds like everything comes through a busted speaker. Think Charlie Brown's teacher buzzing in your ear.

     b. Autophony: Another byproduct. This one is loads of fun. It's when the sound of my own voice bothers me. OR - even better - when I can hear my heart beat or my breathing sounds extremely loud. This symptom alone has kept me from singing - something I have been doing since childhood.
4. Fullness and pressure in the ears: This is constant for me. I always feel like I need to pop my ears but can't. This, too, adds to the hearing loss. If I switch sides when sleeping, I can actually hear the fluid dripping from one ear to the other.
5. Migraines: Yep. You guessed it. Headaches are dessert. I get them. Not often. But when I do, I need to sleep.

Two years ago, an audiologist diagnosed me with severe Meniere's in BOTH ears. I am taking this thing one day at a time. My prayer is that I can share my experiences so that others with this disease know they are not alone, and those who know someone with the disease will begin to understand what it's like.

Meniere's Monday

It's Monday and that means it's time for an update on the Meniere's Disease.

Last week proved to be a "good" week. I use the word "good" loosely as my barometer of good has changed since getting the "Severe Meniere's Disease in BOTH Ears" diagnosis two years ago. Good for me means pressure in the ears, issues with hearing - either I can't hear or things are too loud, and no dizzy spells.

I woke up last Thursday with my right ear completely closed. I tapped the side of my face and couldn't even feel my finger. It was an odd sensation. Not quite numbness. A little like being swollen. Friday - after sleeping all night on my left side - the fluid switched to my left ear. Hey - I'm all about balance. No double standards for these ears.

I have a new tool in my Meniere's-fighting arsenal.

Definitely NOT high fashion but VERY useful in fighting nausea!

I feel a bit like Wonder Woman when I wear them. Only not as cool. Or awesome. But the Sea Bands work. They are cheap, come in a variety of colors (even fun ones for kids), and aid in the suppression of nausea. Initially, I assume they were intended for travelers. Now, however, pregnant women wear them to prevent morning sickness, and cancer patients use them for all the dreadful nausea associated with chemo. Crazy, huh?

They are simple to use, come with a nifty carrying case, and are washable. I highly recommend these for anyone experiencing nausea from any affliction. Now...if I could just find some cool gold cuffs to stop the dizziness (and bullets...mwahahaha), then I could be the Meniere's Maven. Yes. I like the sound of that.

You inventors out there get crackin'.

Until we meet again. Or I write again. Whichever comes first.

Meniere's is not my friend

I haven't posted in a long time. Mainly I have been wallowing in self pity. Try it sometime. It won't get you anywhere, but, hey, everyone needs to wallow. I actually like that word. Wallow. It sounds like something birds say when they are congregating in a park. Wallowallowallowallow. C'mon. You know you want to say it.

Anyhoo...Meniere's disease is changing my life. Not because I am allowing it to. It just is. It's unavoidable. In the past 30 years, scientists have not advanced the treatment at all. Nobody knows what causes it. Each person reacts differently. Some people have it severely or mildly. Some people experience it in one ear. Some in both. Some people stay dizzy, throw up, lose their hearing, and suffer from depression. Some experience mildly annoying symptoms. Predictions are impossible.

My doctor - the third one I consulted - told me that patients who have an attack or episode experience the same level of depression as terminal cancer patients with less than one month to live. Fabulous.

I am in a funk. Every day I discover things Meniere's is taking from me. I don't want to be this person, though, who wallows in self-pity. I don't want to let the disease change who I am. I just don't know what to do.

For now, I will wallow. With a Klondike bar and a bowl of popcorn. And Squeaks in my lap.