What Happens When I Google My Symptoms...

...I am led on a wild goose chase and my easily distracted, wandering mind indulges in the 'what if's' and pretty soon I start to worry if I have other rare conditions and click on random link after link in pursuit of answers. Although I start off on more reputable sites like Wikipedia and WedMD, I often end up on YouTube, watching videos about babies born with a foot in their brain, or worse, without a brain. Not to make light of either of those conditions as they are both extraordinarily rare and devastating. I couldn't even tell you how Googling acid reflux led me to those YouTube videos, but the point is I waste an exorbitant amount of time researching my conditions on the Internet when that is the work my doctors are supposed to be doing on my behalf in the first place. But since they seldom do, I am usually left to my own devices.

I believe only have one honest doctor, my EP, who reminds me nearly every time I see him that it's often impossible to put a neat and tidy label (diagnosis) on anyone and that the reality is there are hundreds if not thousands of medical conditions out there that have yet to be named, either because they are extremely rare or have been mis-categorized, lumped into a syndrome when in reality putting a label on anything may impose an overgeneralization, or at worst, even a catastrophic misdiagnosis.

Diagnoses are more like starting points. That is, it's 99% certain that I have autonomic dysfunction. It's also highly probable that I have POTS or a POTS-like condition. My EP does not know and has not classified what "type" of POTS I have despite my persistence to find out.

Too bad I am the labeler type who likes to define everything and then tie it all up in a neat and tidy bow. No two people with POTS have identical symptoms or numbers. Very similar, often. Identical, almost never. We are like snowflakes, if you will. Each delicate, each different. Pretty vague, but that's about as deep as my doctor is willing to define dysautonomia...

Although it's practically an oldie, this song randomly popped into my head today. It reminds me of all the strong and brave women in the POTS and EDS communities and how different we are from typical patients. An anthem for POTS/EDS patients perhaps and how difficult it is for doctors to define us. Many of us are a walking episode of 'Mystery Diagnosis.' I appreciate how Natalie Merchant subverts the negative stereotypes surrounding rare illnesses in this song. She shows us that being a medical anomaly is more of a 'Wonder' than a burden. And that's how it should be.

Natalie Merchant - Wonder (Official Music Video). Watch more top selected videos about: Natalie Merchant

And The Winner of the FaceCaddy Giveaway Is...

Congratulations, Cyndi! You have a Zebra FaceCaddy coming your way! :)

Zebra FaceCaddy Giveaway for EDS Awareness Month!

I am thrilled to introduce this product to my fellow zebras and readers everywhere! I don't endorse products on my blog unless I feel very strongly about them. The FaceCaddy is one of those life-changing products that I can confidently recommend without reservation. It's a safe, med-free, non-invasive and affordable remedy for many different ailments including TMJ pain, migraines, sinus headaches and even hot flashes! Every EDS patient should have one of these on standby in the medicine cabinet.

A FaceCaddy user myself, I can attest to the quality and effectiveness of this product. The technology behind the FaceCaddy is simple and time-tested: ice and heat therapy are safe and effective treatment approaches that have been widely used by physical therapists, chiropractors and Md's for years. What makes the FaceCaddy so revolutionary is the fact that it renders hot/cold therapy completely portable and convenient: you no longer have to lay on your side while awkwardly holding a bag of frozen peas against your face for twenty minutes at a time. Instead you simply strap on the lightweight, wearable FaceCaddy and go on about your business while still reaping the benefits of hot/cold therapy which include pain relief, reduced inflammation and muscle relaxation.

As most of you know by now, I have been suffering from TMJD for nearly five years and have tried several different treatment approaches (most are costly, painful and largely ineffective) only to find myself right back to where I'd started from: with ice and heat therapy. Admittedly, when I'm in bad pain, I find it hard to muster up any patience. One of the reasons hot/cold therapy never worked well for me in the past was because I never had the patience to hold the ice or heat up to my head for long enough to relieve pain, reduce swelling or relax muscles.

Now that I wear the FaceCaddy, my impatience no longer poses a threat to the effectiveness of ice/heat therapy. If I'm having a really bad TMJ flare-up I often sleep with the FaceCaddy on. It's comfortable, soft and insulates the hot/cold packs so that they stay cold or warm for a long period of time without having to constantly re-freeze or re-heat them. A major bonus so you can truly relax while wearing it.

In honor of Ehlers-Danlos Syndrome Awareness Month I will be giving away a brand new FaceCaddy in zebra print with neon pink trim courtesy of FaceCaddy creator himself, John Lucas, who generously donated this product to share with my readers and commemorate EDS Awareness Month.

To enter the Zebra FaceCaddy Giveaway, simply:

1) Become a follower of my blog.

2) Post a comment below this post and tell me why you'd like to try a FaceCaddy.

*If you're already a following my blog then please post a comment on this post and any other post of your choice by May 19th, 2012.

To get one more entry in the giveaway contest (your name will go into the hat twice!) please share this post on Facebook.

The deadline to enter this giveaway is Saturday, May 19, 2012.

Good luck! The winner will be drawn from a hat and be announced here on Defying Gravity after May 19th.

In the meantime, the FaceCaddy is available online in four lovely fabrics: zebra, pink, black and paisley. Retailing at $24.99, this is one small investment in your health I promise you won't regret.

FaceCaddy is made by Caddywraps. They also make the BackCaddy which utlizes the same portable hot/cold technology and provides gentle compression (would have worked great after my appendectomy and will no doubt be my next CaddyWraps purchase!) and the EyesCaddy which works wonderfully for migraines and light sensitivity. To purchase any of the CaddyWraps products, visit CaddyWraps.com.

May is Ehlers-Danlos Syndrome Awareness Month!

What is everyone doing to spread awareness this month?

Coconut Milk Comparison and Review

Up until about 3 months ago for everyday of my life I consumed several glasses of dairy milk religiously. Along with ice cream, cheese and yogurt. It all sat fine with me. Since having my appendix removed in January, however, I suddenly couldn't digest milk anymore. But I still needed a satisfying drink to accompany my cookies. Soy milk and rice milk are both fine (I personally think almond milk tastes like play dough), but I had heard good things about coconut milk and already enjoy coconut water so I figured I'd give it a try. Over the past few months I've tried just about every coconut milk on the market and these are my favorites in terms of taste and consistency. Nutritionally they are all relatively similar to each other and have potassium, b-vitamins and added calcium. My only complaint about coconut milk in general is that it lacks the protein that dairy milk has going for it.

Favorite Perishable Coconut Milk:

A tie between,

Silk PureCoconut Milk in Vanilla




So Delicious Vanilla Coconut Milk



I love both of these Coconut Milks and honestly don't have a preference. I typically get whichever one is on sale or I have coupons for. I always keep it in the fridge. One of my favorite ways to consume coconut milk is to fill a glass one third full of coconut milk, another third with pineapple juice and the other third with guava juice. Tastes a bit like a mixed drink (sans the rum, of course). The added vanilla flavor lends both of these coconut milks a bit more versatility. They taste fine on cereal and with cookies, rendering vanilla coconut milk a true dairy milk substitute in my opinion.

Best Shelf-Stable Coconut Milk:

Trader Joe's Vanilla Coconut Milk



It's no surprise that I am a huge Trader Joe's aficionado so TJ's shelf stable coconut milk was naturally the first one I tried and it even made my top ten list of Trader Joe's products. It is a great pantry staple and has a creamy texture and smooth flavor but it's not as nutrient-rich as the perishable coconut milks and doesn't have quite as robust a flavor in my opinion. However it's a great backup to keep on hand for when you run out of the perishable stuff and don't feel like running to the store.