2013 Year In Review

This year brought a lot of major life changes and new beginnings for me. Mostly positive ones. I moved to a new home in a different location and am now (finally!) comfortably settled in here. I am living within walking distance to a major doctor's office, lab and my physical therapy clinic. I'm also extremely close to groceries, gas and restaurants. The convenience of not having to drive everywhere has simplified my life a great deal. The appointment running has calmed down a bit too with the exception of physical therapy and dentistry that is. The dental work I've had done and am still having done has tried ever fiber of my being this past year. I only have seven more fillings and five more crowns to go before I am completely cavity-free. I have had a grand total of three root canals, one crown and three fillings done this year. The physical, emotional and financial stress of dental work is enough to drive anyone clinically insane. I realize I have to keep plugging away at fixing my teeth to avoid future root canals and extractions, as those are not an option for me.

My physical therapy appointments though tough, are also rewarding. I don't look at physical therapy as just another appointment, I view it as an integral part of my weekly routine. I am already seeing results in the strength department. Luckily I build muscle pretty quickly which is helping to stabilize my ankle along with the rest of my wobbly body. I am lucky to live right next door to such a great physical therapy clinic with a therapist who also happens to suffer from hypermobility and TMJD herself. Doing physical therapy as a teen saved her from having TMJ surgery and that experience was what led her to the field. I feel optimistic about the progress that I am making and feel myself getting a lot stronger each and everyday. I only go twice a week but have an intense home exercise program that I do daily, sometimes in my living room and sometimes at my apartment complex's on-site gym, which is another nice feature of the new place.

The first month after I moved was fraught with major challenges concerning air quality. I had selected and moved into a ground floor unit, but unfortunately the complex was built on a wetland and as soon as the rains started in my apartment reeked of a strong, sickening mold smell. So much for life in a "luxury" apartment. A home humidity monitor I purchased revealed that the internal humidity reached 75% everyday. A normal internal humidity level is between 30-50%. Anything above 60% provides ideal conditions for mold growth. I fought with the complex to let me move to another unit. An option which was totally feasible considering it was brand new construction and only a quarter of the units were occupied. Their corporate management initially denied my request calling the mold smell a "subjective" complaint since they couldn't pinpoint the exact source of the mold. Upon conducting a bit of careful research and calling the city building inspector it turns out that the problem was much larger than bleach or exhaust fans could have ever fixed. In order to remedy the problem, the building would have had to have been torn down completely. Because apartments are technically classified as commercial space (even though residents inhabit them as their homes,) the city allows them to build on concrete slabs without crawl spaces. They didn't allow the concrete slab to cure long enough in the construction process which resulted in a subsequent sponge-like effect on the foundation every time it rained. Every time it rained that damp moldy smell crept up into my home from the concrete floor, through my carpet and into the living space.

I finally moved into a new apartment in the same complex at the beginning of October after enduring a month of hell in a moldy apartment. I am now living on the second floor of an apartment that doesn't smell of anything other than whatever I have been cooking in the kitchen. My sinuses are much better now and I can actually breathe out of my nose in the mornings again. Something I had wondered if I would ever be able to do again. Although sinus surgery may become an inevitability down the road due to a deviated septum and bone spurring, for now I have dodged a major bullet by avoiding surgery. And I am happy to put it off for as long as possible unless it becomes a necessity. My new apartment feels much healthier and I can breathe easy here which is a huge relief.

I am doing decent in the health department at the moment (aside from a nagging, two-week old mystery upper right quadrant and back pain that landed me in the ER for bloodwork, an abdominal ultrasound and a HIDA scan to no avail and is currently being investigated by my primary care doc). My health is something I do not take for granted at all. For the most part my POTS is controlled and doing much better now that I've removed myself from the moldy environment of the other apartment. Earlier this year I had a scary bout with benign positional vertigo that finally subsided after taking a month round of Augmentin antibiotics for my sinuses. It was a scary time for me. Every time I layed on my right side or flat on my back I would get the spins. This continued for a few months with my doctor telling me it was "just some inner ear virus," and an ENT insisting it was benign positional vertigo spurred by spending too much time in a dental chair as I had a scary incident where some heavy duty dental drilling back in the chair spurred a major attack. Whatever it was, it is no longer happening to me now and I am so thankful. I had a follow-up with a new ENT the other day and luckily they were not able to trigger the vertigo in his office. Because of my history with rotational vertigo during dental work though, he wants me to undergo a more sophisticated test called a VNG early next year to measure eye movements during different positions and then conduct a repositioning procedure in the office to resposition any inner ear crystals that may have become dislodged.

In 2014, I still have plenty of work to do. I would like to make more strides in the health and fitness department with an emphasis on healthier eating. I definitely have some work to do in that department. I am fortunate to have a wonderful boyfriend who enjoys cooking for me, the problem is he enjoys cooking tasty comfort foods without worrying about things like nutritional content or calories. Oh well, I can't complain too much. I know how lucky I am to have someone who cares about me and takes good care of me. I am finally in a healthy relationship, one that I don't have to change myself for. Compared to my verbally abusive ex, this experience has been night and day and I am so thankful.

So to sum it all up, this year has brought some health ups and downs, but overall I'm in a good place health-wise. I'm in a good place location-wise after finally moving into a healthy apartment. And I'm in a great place relationship-wise with someone who loves and respects me. Next year I intend to get my body in peak physical condition and hopefully start to renew old hobbies one by one without destroying my body in the process. For now I will have to say no to ballet but may take up pilates and yoga again in the new year.

Liebster Award!

I am honored to have been nominated for a Liebster Award by one of my favorite new bloggers and fellow potsy Brittany at Fabulously Faint. Admittedly I don't know much about the award except for the following: 

The Liebster Award is used by bloggers who have 200 follows or less on bloglovin' to promote each other and to make more friends in the blogging community and attract more attention to their blog. Each nominee must first list 11 random facts about themselves and then answer the 11 questions proposed by the person who nominated them. Lastly choose 11 bloggers and ask them your own 11 questions.

I in turn nominated eleven of my favorite bloggers! They happen to all have dysautonomia and/or related conditions.

Brooke at Growing Older, Growing Up?

C.M. at Life Unknown

Erin at My Life as ErinJ0

Kingsley at Life As Grike

Michelle at Living with Bob

Lauren at POTS Grrl

Hannah at Hannah's Dysautonomic Life

Candice at Infectiously Optimistic

Michele at Dysautonomia Normal

Jessica at Falling Apart At The Seams: My Life with Ehlers-Danlos

Anomie at Anomie Fatale: The Agalma Femme


11 Random Facts About Me!

1) I have Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Temporomandibular Joint Disorder.

2) I am obsessed with 90's pop culture nostalgia: toys, junk foods, music, television etc.

3) I adore the color pink and always have. Because some things never change.

4) My all time favorite book is The Great Gatsby.

5) I have perfectionistic tendencies and am very OCD about germs and cleanliness, though I have never been officially diagnosed.

6) I hold three bachelor's degrees including a degree in English Literature.

7) I loathe technology and hate trying to keep up with all the latest and greatest gadgets. I resisted the whole touchscreen smartphone craze for a LONG time. 

8) I am a dog person. If there are 20 people in the room and there are any dogs in that room, the dogs will always come sit on my lap. This phenomenon has happened on many occasions. We get each other and speak the same language!

9) I used to produce magazine style shows and host talkshows for government television.

10) I have naturally curly hair that is extremely hard to tame. I prefer to wear it straight but everyone else prefers it curly.

11) I used to dance ballet, jazz and modern dance and still really miss it. Ballet was my favorite.


Here are my questions courtesy of Brittany at Fabulously Faint:

Question #1
If you could only eat one food for the rest of your life what would it be?

Fruit Tarts. Undoubtedly fruit tarts. Anyone who hasn't tried one of these fine delicacies absolutely needs to. I would happily eat them everyday for the rest of my life. Fruit, custard, chocolate. All in one pretty little package. What's not to love?

Question #2
What's the most exciting/adventurous thing you have ever done?
Although I'm about as far from an adrenaline junkie as you can get, I'd say the most exciting thing I've ever done was meeting my favorite band and having a drink with the lead guitarist a few months before I got sick. I could've died happy that night.

Question #3
Describe yourself in three words.
Creative, kind and funny.

Question #4
Who inspires you?
Chronic illness survivors! That includes a lot of strong people. And anyone who stands up for injustice especially in the face of adversity! It takes a lot of strength to do such a thing. There are too many people I admire to name just one!

Question #5
What is your favorite piece of clothing?
My pink peacoat. It personifies me!

Question #6
If you could switch lives with someone for a day who would it be?
Someone who is in perfect health and optimal physical condition. I would take advantage of being in a healthy body for a day, that's for sure!

Question #7
If you could choose any career what would it be?
An interior designer! It wouldn't even feel like work to me, I would likely enjoy every second of it!

Question #8
What is your guilty pleasure?
Reality TV. Shows like Keeping Up With The Kardashians and Dance Moms especially.

Question #9
What is your dream vacation?
Australia. I have always, always wanted to see the Sydney Opera house on New Year's Eve and to hold a koala bear!

Question #10
Who are your style icons?

Anna Nalick. I was at her concert recently and we happened to be wearing the exact same ankle booties! Her style is unpretentious yet pretty and feminine. Timeless, not trendy. She always utilizes vintage or eclectic finds skillfully. She is not flashy but classy and refined and doesn't feel the need to dress trashy.

Question #11
What is your biggest achievement?
Being Valedictorian and voted most likely to succeed in my high school yearbook. It was flattering that my peers had such a favorable opinion of me and nice to be valued for my intellect. Especially these days now that POTS-induced brainfog has seemingly clouded my once sharp intelligence. If nothing else, it's comforting to know I was once a brainiac!

My Childhood Idol Coped with Chronic Illness Too!

Every oh so often I get nostalgic for the great 1990's. For me, my childhood represents a simpler time when I was blissfully healthy and carefree. I was always singing and dancing. And so were my friends. I fondly and distinctly remember one of our favorite childhood pastimes was to "play TLC." We would spend hours getting dressed up like TLC, performing dance routines to their music videos that we had memorized and singing along with the lyrics of every song. We even did our makeup to do our best to resemble our respective songstresses: T-Boz, Left-Eye and Chilli, the CrazySexyCool girl group that dominated the 90's and revolutionized the faces of hiphop, R&B and pop music. They were the epitome of girl power long before the Spice Girls ever came to be. All I ever wanted to be when I grew up was a member of TLC. Nevermind the fact that I was a little white girl from the suburbs. In my eyes, they were the coolest, prettiest chicks on the planet. I identified with them. They were three petite young women who could sing and dance with style. They preached about self-esteem, safe sex and friendship among other things. I absolutely idolized them. I'm certain many other little girls of the '90's shared my sentiments.

The other night I finally watched CrazySexyCool: The TLC Story, VH1's biopic of the epic girl group's rise to stardom. I was extremely impressed with the casting of this film, as the actresses were dopplegangers of their characters, especially 'Lil Mama who portrayed Lisa "Left-Eye" Lopes with a keen awareness of her character. She had clearly done her homework. I also appreciated the music video reenactments which were spot-on. I had a fun walk down memory lane but was also shocked by the level of turmoil each TLC member experienced behind the music. Tionne "T-Boz" Watkins' story struck a nerve within me as it hit particularly close to home. She battled a rare chronic, genetic and life-threatening condition called sickle-cell anemia and was hospitalized for it on several occasions. Initially she kept her illness a secret from the public and the press as it is largely an invisible illness. At the height of TLC's fame she came out about her illness and went on to become a spokeswoman for the Sickle-Cell Anemia Association. She was told she'd never live past 30 and never have children and she has done both. She has a beautiful little girl named Chase and is still managing to live a full life in spite of her illness.
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Her voice is still as rockin' as ever, as she and Chilli reunited in the recording studio at the end of the movie. What I didn't realize was that while TLC was touring, their second manager scheduled hospital breaks for T-Boz and had EMT's on hand at all times who were prepared to manage her condition. When I was a little girl I had no idea what my favorite singer was going through with her health behind the scenes of what I perceived as a glamorous lifestyle. Now that I have a better understanding of their personal struggles, I have even more respect for the girl group I already revered. They will always, always be my favorite. If I could ever do lunch with the remaining members of TLC, my life would pretty much be complete.

For more information about sickle-cell anemia, please visit http://www.sicklecelldisease.org/.

Shop at Amazon to Support Dysautonomia Research!

Whether you're a big holiday shopper or simply make purchases from Amazon once in a blue moon, please shop through this link to support dysautonomia research. Simply use the Amazon search box on the right of the page to find the item you're looking for before making your purchase.

You can purchase ANYTHING from Amazon and 4-6% of your total purchase will automatically be donated to dysautonomia research without costing you a dime extra. There are no gimmicks here. All you have to do is remember to click through the box on the Dysautonomia International webpage before putting items in your cart.

I am on the Patient Advisory Board at Dysautonomia International, an organization I am proud to be a part of. Dysautonomia International has made funding research their primary objective in hopes of ultimately supporting the discovery of a cure or new and improved treatment options for patients. More research leads to more awareness in the medical community and at large. More research and better physician awareness will also help render dysautonomia more of a household name like lupus or multiple sclerosis instead of an illness that sounds obscure and and foreign to people. Education is key and it often starts with educating doctors and providers in the medical profession so that they can begin to recognize and diagnose dysautonomia, thus leading to more prompt patient treatment and better, more thorough and comprehensive care overall.

POTS: The Pretty Girl Disease?

While I may be a tad bit biased, I think POTS patients are among the coolest people in the world. Also among the prettiest. And is it some sort of eerie coincidence that there are many potsies who are models? Take rising star Alexandra Agro (pictured above) from the latest season of America's Next Top Model. Unfortunately she became very ill due to a POTS episode and missed what became her final elimination ceremony. There is also Marissa Irwin, an EDS patient who suffered from Chiari Malformation and POTS and was featured on an episode of Mystery Diagnosis. One of my best friends also suffers from POTS and is an up-and-coming model with great star potential.

While I don't have any concrete scientific evidence to back up my claim, maybe someday researchers will study the POTS-pretty girl phenomenon. One thing I know to be true: POTS patients are beautiful inside and out, in spite of having wacky, temperamental autonomic nervous systems!

Here is a link to an Alexandra Agro interview where she discusses her POTS with Reality TV World:
http://www.realitytvworld.com/news/exclusive-alexandra-alex-agro-talks-top-model-guys-%26-girls----again!-15399.php

Here is the Mystery Diagnosis episode featuring model Marissa Irwin in its entirety:



And, just for fun, here is Keri Hilson's "Pretty Girl Rock." (Disclaimer: The lyrics of this song are in NO WAY meant to imply that POTS patients are arrogant or conceited about their looks. I just happen to really like this song. It's equal parts cheesy and catchy.)

Cucumbers are Cool...And Curative!

While I very seldom read email forwards, the ones from my grandma tend to be useful and from reputable sources. This one, detailing the health benefits and myriad household uses of cucumbers, caught my attention. I already knew cucumbers were healthy. An alkaline food, they help balance pH and are one of the only foods that never cause me acid reflux. They really seem to help settle my stomach and are refreshing. I also love me a cucumber peel facial. Here is the email forward verbatim:

Never thought that CUCUMBER can do so much!

The Amazing Cucumber

This information was in The New York Times several weeks ago as part of their "Spotlight on the Home" series that highlighted creative and fanciful ways to solve common problems.

1. Cucumbers contain most of the vitamins you need every day, just one cucumber contains Vitamin B1, Vitamin B2, Vitamin B3, Vitamin B5, Vitamin B6, Folic Acid, Vitamin C, Calcium, Iron, Magnesium, Phosphorus, Potassium and Zinc.

2. Feeling tired in the afternoon, put down the caffeinated soda and pick up a cucumber. Cucumbers are a good source of B Vitamins and Carbohydrates that can provide that quick pick-me-up that can last for hours.

3. Tired of your bathroom mirror fogging up after a shower? Try rubbing a cucumber slice along the mirror, it will eliminate the fog and provide a soothing, spa-like fragrance.

4. Are grubs and slugs ruining your planting beds? Place a few slices in a small pie tin and your garden will be free of pests all season long. The chemicals in the cucumber react with the aluminium to give off a scent undetectable to humans but drive garden pests crazy and make them flee the area.

5. Looking for a fast and easy way to remove cellulite before going out or to the pool? Try rubbing a slice or two of cucumbers along your problem area for a few minutes, the photochemical in the cucumber cause the collagen in your skin to tighten, firming up the outer layer and reducing the visibility of cellulite. Works great on wrinkles too!!!

6. Want to avoid a hangover or terrible headache? Eat a few cucumber slices before going to bed and wake up refreshed and headache free. Cucumbers contain enough sugar, B vitamins and electrolytes to replenish essential nutrients the body lost, keeping everything in equilibrium, avoiding both a hangover and headache!!

7. Looking to fight off that afternoon or evening snacking binge? Cucumbers have been used for centuries and often used by European trappers, traders and explores for quick meals to thwart off starvation.

8. Have an important meeting or job interview and you realize that you don't have enough time to polish your shoes? Rub a freshly cut cucumber over the shoe, its chemicals will provide a quick and durable shine that not only looks great but also repels water.

9. Out of WD 40 and need to fix a squeaky hinge? Take a cucumber slice and rub it along the problematic hinge, and voila, the squeak is gone!

10. Stressed out and don't have time for massage, facial or visit to the spa? Cut up an entire cucumber and place it in a boiling pot of water, the chemicals and nutrients from the cucumber with react with the boiling water and be released in the steam, creating a soothing, relaxing aroma that has been shown the reduce stress in new mothers and college students during final exams.

11. Just finish a business lunch and realize you don't have gum or mints? Take a slice of cucumber and press it to the roof of your mouth with your tongue for 30 seconds to eliminate bad breath, the photochemical will kill the bacteria in your mouth responsible for causing bad breath.

12. Looking for a 'green' way to clean your faucets, sinks or stainless steel? Take a slice of cucumber and rub it on the surface you want to clean, not only will it remove years of tarnish and bring back the shine, but is won't leave streaks and won't harm you fingers or fingernails while you clean.

13. Using a pen and made a mistake? Take the outside of the cucumber and slowly use it to erase the pen writing, also works great on crayons and markers that the kids have used to decorate the walls!!

Pass this along to everybody you know who is looking for better and safer ways to solve life's everyday problems.

Lemon Juice, Coconut Oil, Apple Cider Vinegar, Oh My!!!

I was so excited to discover the above chart on MindBodyGreen.com. I am all about utilizing natural, chemical-free remedies whenever possible. I intend to try all these products for the various uses listed as I am chronically chemically sensitive and striving to eliminate the toxins from my life.

Cleaning Tips for the Chemically Sensitive

This post has been a long time coming. While my chemical sensitivities are not as severe as they used to be, I still consider myself a highly sensitive individual when it comes to smells. Luckily I am not usually sensitive to soaps and detergents, but everything else around the house is fair game, particularly when it comes to cleaning products. I don't have any products like Windex, PineSol, 409 or anything of the sort around the house. Instead, I rely on products that don't trigger my chemical sensitivities. A few of my favorites are Bon Ami, the entire Seventh Generation line, (especially their dishwashing detergent!) baking soda, vinegar, hydrogen peroxide, and occasionally rubbing alcohol. If I ever have to be around chemicals I use them outdoors only. I even polish my nails outside on the deck because the smell of the polish and the remover bothers me indoors.

I keep a pretty tidy house thanks to having mild ocd tendencies. So I never let things get dirty enough to warrant the use of chemical cleaners. For dusting I simply damp dust everything. I wash the countertops with water and a dab of dawn dishwashing liquid. If I need to disinfect surfaces I will use either hydrogen peroxide or rubbing alcohol. A 50/50 mixture of hydrogen peroxide and water in a spray bottle does double duty as a powerful unscented glass and window cleaner and a disinfectant. It's one of my favorite products. Some people also swear by a 50/50 mixture of vinegar and water for window cleaning but I haven't tried that one yet. I use Purex Free and Clear detergent in the washing machine and I don't use any fabric softener or dryer sheets as they're simply not necessary. I use organic wool balls in the dryer as an alternative. Glade Plug-Ins, Febreze or any sort of air freshener sprays are also not necessary. If you must scent your air to create extra ambiance, use things like soy-based scented candles made with essential oils, or try putting a few drops of your favorite essential oil in a diffuser. There are myriad chemical-free and natural product lines on the market these days, in big stores, online and made by small businesses and individuals. I love Dreamland Naturals on Etsy for affordable all natural soaps and bar shampoos.

Not only is chemical-free cleaning way healthier for you and your family, it's also much easier on your environment. By going chemical free you're reducing your carbon footprint and going greener. It's a win/win.

October was Dysautonomia Awareness Month! How Did You Celebrate?

It's the last day of Dysautonomia Awareness Month! How did you commemorate the occasion? Many people spread awareness online, through successful social media campaigns like "Thumbs Up for Dysautonomia Awareness" where people proudly sported blue nail polish on their thumbs to show solidarity and support for dysautonomia patients. Many others also took the opportunity to raise awareness in their communities by hosting fundraisers, educating physicians, or friends and family. It's important to realize that raising dysautonomia awareness doesn't end in October. It's a 24/7 pursuit. Individuals around the world are working tirelessly to spread awareness 365 days a year. For more ideas and information on how to keep spreading awareness or to host a fundraiser to benefit new and ongoing research, please visit DysautonomiaInternational.org.

On Losing the Ability to do What You Love

"...I was dancing again, every muscle effortlessly engaged, articulating in perfect synchronicity."

About a month ago, one of my best friends sent me an article that brought me to tears. While I'm sure her intention wasn't to make me cry, this article hit way too close to home. She sent it to me because she knew it would resonate within me like it did within her. We had both been dancers in our former pre-POTS lives. More specifically, ballerinas. Living a beautiful life doing what we loved and were perhaps born to do. We were introduced to each other through a mutual friend who also had POTS and recognized that we were destined to be besties. We bonded instantly over our similar past experiences and our current shared love of reality dance TV. While watching Breaking Pointe is no substitute for dancing ourselves, it certainly does help fill the void.

The night before I received the article in my Facebook inbox, I had had a dream that I was dancing again. It was haunting, but not a nightmare. It was a very vivid, beautiful dream that made me feel very much alive and self-actualized in those brief moments I that was dancing again, every muscle effortlessly engaged, articulating in perfect synchronicity. Unlike my current reality, I had complete control over my own body, and it felt good. Exhilarating even. I was in my old ballet class with my former instructor Miss Mary guiding my movements across the floor. Except I was my current self in present day, just in an alternate reality. A reality much more fulfilling than my own.

In my present reality, I am currently in physical therapy for a bum ankle. Or at least what I thought was a bum ankle that to my dismay actually turned out to be two bum ankles and a bum hip. It's no secret that years of ballet takes a toll on one's body. And perhaps even more of a toll when you're hypermobile and repeatedly encouraged by over-zealous instructors to relish in your perfect turn-out. While I haven't danced ballet for several years, apparently I still walk like a duck, my hips stuck in a perpetually turned-out state. My physical therapist also happens to be hypermobile and is good at correcting these issues. She uses pilates as a way to strengthen muscles and thereby control her own hypermobility. I did not realize how bad my ankles had gotten until she said that I need to learn how to walk all over again. Apparently I've been doing it wrong all these years.

As I raised into releve alongside a supportive countertop in physical therapy, I kept having flashbacks to the ballet barre and and all the hours that I had spent there, nearly deforming my own body from three years of age onward, as it was growing and developing into the body I have today. Going to ballet class was as routine as brushing my teeth in the morning. As the years of class went on, all our bodies grew to be the same shape and size, so that we were all nearly identical and could all wear the same size costume if need be. There was certainly not much physical diversity in ballet. Most of us were naturally hypermobile to some degree. If you weren't, you simply couldn't compete in the ballet world. Or, you had to work very, very hard at it. Those are the type of dancers I respect the most. The ones who have to work at it. Now that I'm aware of my hypermobility, I realize I possessed an unfair advantage in the ballet world.

I have been asked the following question several times by friends and family: if you could go back in time knowing what you know now, would you have still danced ballet? The answer is undoubtedly yes. Although it may have caused irreparable damage to my body, I was simply meant to do it. And there has always been a void since I stopped dancing. I consider myself a generally happy person, but there's always been something missing. And I know precisely what that something is.

Ballet was my outlet, my escape, my passion. It helped quell the obsessive compulsive tendencies I had hidden as a child. It also came so naturally, more naturally than sports or other athletic pursuits. I didn't have to work at it. It was effortless. The rest of my life has certainly not been effortless by comparison. Physical therapy is hard work. I am developing a new awareness of my body, and an appreciation for what I put it through. I am trying hard to correct bad habits that ballet helped me acquire over the years and push through the pain. I carry with me everyday now the physical reminders of having once been able to do what I loved. And to me, it's all been worth it. If I could still dance ballet today, I absolutely would.

Dysautonomia International's First Annual Patient Conference & Lobby Day Recap!!!

Here is a highlight video of the 2013 Dysautonomia Patient Conference & Lobby Day held in Washington DC earlier this month! It was a tremendous success for dysautonomia patients and physicians alike!

It's EDS Awareness Month!

No, it is NOT erectile dysfunction syndrome awareness month, nor is "EDS" an acronym for that! EDS stands for Ehlers-Danlos Syndrome and May marks a special month of awareness for this life-altering genetic connective tissue disorder which often results in extreme joint hypermobility and frequent dislocations among myriad other symptoms. I did not learn I had this condition until long after my POTS diagnosis. Many people with EDS also suffer from dysautonomia as a secondary condition. My POTS and TMJ are likely both linked to EDS as an underlying cause.

As a former ballet dancer I have always been very flexible. And that was a major attribute growing up. But never realized I had stretchy skin until an orthopedist pointed it out. And more importantly, I never realized that these seemingly harmless traits would predispose me to other serious health issues like POTS. I am very fortunate that my joints seem to be holding up okay so far (knock on wood!) and feel for all the EDS patients who have already had multiple joint replacements at my age or younger. EDS manifests differently in each patient although most of us share those hallmark traits of flexible skin and joints. Some people have very severe cases which can result in disability and even death, and others are plagued by milder cases that don't impose a major impact on daily life.

If you are extremely flexible and suspect you or someone you know may suffer from EDS, please talk to your doctor about it. And consider getting a referral for genetic testing. Diagnosis can lead to more comprehensive, tailored treatment and can help doctors and surgeons determine safer means of treatment. For instance, when I was struck with appendicitis and found myself in an emergency situation, I was able to inform the surgeon and anesthesiologist of my EDS before surgery. They took extra special care of me because of my EDS diagnosis, paying careful attention to the position of my jaw during surgery, as it is prone to dislocations. Knowledge is power. Take ownership of your health to help your healthcare team provide you with the best care possible!

Cosmopolitan Magazine Covers Dysautonomia!

In case you haven't seen it yet, there is currently an article on Cosmopolitan.com written by fellow dysautonomia patient Ilana Jacqueline, who provides Cosmo readers with a firsthand account of her experience with POTS. Here's the link to her story.

http://www.cosmopolitan.com/advice/health/rare-diseases?click=main_sr

Thanks Ilana, for sharing your story with all those Cosmo readers out there!