Thursday, January 27, 2011

The Chat

I mentioned in an earlier post my support chat room that I stumbled upon while researching all that I could about Meniere's Disease. The web address is Through this blog, I've met some amazing individuals-people that, although I haven't met in person, I'm proud to call my friends. Truly a welcoming, supportive, loving group of individuals. They go through the ups and downs of this disease-drop attacks (which are as bad as they sound), spinning, puking, deafness, loss of balance, loss of independence...and yet through all of their suffering, they hop online to encourage and support others who are having a rough go of it.

Hopefully you or those you love NEVER have to experience the horror that is Meniere's Disease, but if you ever cross paths with someone who is suffering, please refer them to this group. I promise that it will change their lives for the better.

Onward we go...

Monday, January 24, 2011


It's that time of year again. The Sundance Film Festival has arrived here in Utah. When I was in college, this was my favorite time of year. I took a Sundance Film Fest class my sophomore year, and was able to see 27 films and 5 panels throughout the span of two weeks. Whoa. Intense! I got to see the premieres of cool films like Donnie Darko starring Jake Gyllenhall, Manic starring Joseph Gordon Leavitt, Memento, and so many others. It was a life changing experience, albeit an exhausting one.

These days, I prefer to carefully select one or two special films to see. I haven't participated in the parties, events or the concerts in years. However, my dear friend Jay from New York came into town to experience Sundance for the first time, and we decided to experience it in full.

On Saturday, despite the snow flurries and insane traffic, we made our way up to Main Street in Park City, where we immediately bumped into James Franco. He's as dreamy in person as he is on film. We then made our way over to the premier of the film, My Idiot Brother, starring Paul Rudd, Elizabeth Banks and Zooey Deschanel. This film brought out the masses. Long lines + cold weather = grumpy Skye.

On Sunday, we started out at the Queer Brunch, which is always a great time. Lots of networking, lots of ridiculous antics, but not lots of good food. :( Later, Jay scored us VIP passes, and we hit the Swag booths, where I grabbed some great workout gear, make up from Sephora (woot woot), hats, gloves, socks. Awesome. We then hit the Puma VIP Lounge, where Paul Rudd and Zooey D were hanging out. Paul is another actor who is as cute in person as he is in the movies. They were both super sweet, too. On the way out, I passed Ellen's DJ Tony, and he stopped me and asked how I was doing. He is a doll.

We then hit up Page One: A Year Inside The New York Times. My kinda documentary. Two thumbs up. After that, we hopped a shuttle over to the premier of Kevin Smith's film, Red State. The Westboro Church was at the premier protesting the film with the most random, coo coo signs. They brought their traditional "God Hates Fags" and "Fags Bring Doom" signs, but my favorite signs of the evening didn't make much sense: You Eat Your Children, God Hates Your Feelings, and You Must Die. What the???? Who eats children? Why does God hate my feelings? I'm confused.

I'm going to catch up on some much needed sleep today while Jay is skiing. We have one more party to hit up tonight in Park City, before he leaves tomorrow morning. Thus far, though exhausting, the festival has been at times, hilarious, exciting, confusing, bitterly cold, and awe-inspiring.

Wednesday, January 19, 2011

The dizziness....aka The Beast

Some of you know. Some of you don't. But most who know probably only understand a small portion of what I've been diagnosed with.

Meniere's Disease is a conundrum. It's a tortuous illness that causes episodes of spinning, whirling & hurling vertigo, tinnitus (ringing in your ears), and hearing loss. Basically, it's a combination of symptoms that will change life as you knew it, and work to destroy your sanity. People who have it call it "the Beast," for a very good reason.

The exact statistics on how many people in the US have Meniere's Disease is difficult to measure, because many cases go untreated or many are misdiagnosed. It is believed that nearly 1 million Americans suffer with this disorder, and several million more throughout the world. Alas, most people have never heard of Meniere's Disease. I hope to educate people about this illness, and to bring about awareness. When I was diagnosed, I felt confused, terrified and alone. Thankfully, I stumbled upon a Meniere's support group online, and that's where I really learned about just how common this disease is, and about how many wonderful people out there are suffering.

Meniere's Disease was first defined nearly 150 years ago by French physician Proper Meniere. It has been speculated that Julius Cesar, Vincent Van Gogh and Martin Luther had the disease. Recent "celebrities" who have suffered include Allan Shepard, Kristin Chenowith, Steve Francis, and Ryan Adams.

In the 150 years since it's discovery, very little progress has been made in finding a cure for this disease. Doctors are still perplexed as to what the cause of it is, so therein lies the trouble in finding a cure. Most treatment methods are aimed at suppressing your vestibular system, or depleting stored water in your body by taking diuretics. This works for some, but not all.

As we go throughout this little blog journey, I'll share with you what it's like to live with Meniere's Disease, what treatments I've tried, what I hope to try, and what current researchers are working on in clinical trials. There is some hope on the horizon.

I don't want to focus solely on my illness, though, so I'll also be talking about the lights of my life: movies, writing, my chubby pug and my crazy cats, my friends, the good days, the bad days, you know...what's happening on the daily.

I hope you'll indulge me, and join me on this little journey.


Tuesday, January 18, 2011

“There are two mistakes one can make along the road to truth...not going all the way, and not starting.”-Buddha

I'd like to write with the prowess and elegance of Allan Ball or Sofia Coppola. I'd like to tell tales of life that balance delicately on the edge between gut-wrenching fascination and heart-wrenching beauty.

I'm no Allan Ball or Sofia Coppola. Not yet, anyway.

But I do love to write. I do love to tell tales. And maybe, just maybe, you'll one day see my name in the credits of a gut-wrenching or heart-wrenching film.

Until then, I'm going to share my tales here, with my friends.

Here we go....the beginning of it...