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.

Did Brittany Murphy Really Have Dysautonomia?

After yet another Netflix binge, a few flicks left me wondering if their lead actresses could have hypermobility and/or autonomic dysfunction. One is the ever-enchanting Brittany Murphy. I love her as an actress and always have. And although the critics gave it largely negative reviews, I loved her in 'Little Black Book' which I watched on Netflix last night. She looked thin, but not nearly as gaunt as she did in 'Uptown Girls.'

After her tragic, untimely death it was quickly rumored, at least in the online community, that Brittany Murphy may have in fact suffered from dysautonomia. Her half brother Jeff Bertolotti apparently suffers from it and suspects that his sister did as well. According to her myriad symptoms and sudden weight loss which he also experienced, it is quite possible she was plagued by the same condition. Many thought Murphy must have surely suffered from an eating disorder, but keep in mind that many POTS victims also fall prey to sudden weight loss. When I first fell ill I struggled to keep any meat on my bones and I remember my EP hinted at anorexia more than once saying he didn't like to feel my bones. It's sad that we have to prove that our physical symptoms aren't the manifestations of mental disorders. Even though I had a ravenous appetite and was eating everything in sight I still couldn't put on a pound. In addition to being thin, Murphy was also reportedly taking beta blockers for a benign heart arrhythmia...

I have to admit, Bertolotti's theory about Murphy makes sense. I remember seeing Murphy on a red carpet somewhere a few years ago and she completely lost her train of thought in what may have very well been nothing more than a typical 'potsy' brain fog moment most of us are all-too-familiar with. Instead Murphy was accused by the press of being a drug addict. Given that there were no illegal substances found in her system (just prescription/over the counter meds) and she died of pneumonia and anemia, it's pretty suspicious. How many 32-year-olds die of pneumonia? It would be fairly rare in a young, healthy individual unless her body/immune system was already compromised from something like a chronic illness. What is also eerily suspicious is that her late husband died in the same house a mere 6 months later of identical causes: pneumonia and anemia. Could there have been a strange and toxic mold encapsulating their house? Sources like ABC News say no. Most experts agree that they had similar lifestyles/habits that would have led them to the same cause of death. I still say it's more than an eerie coincidence that warrants further investigation.

Another celebrity I suspect may have a POTS-like illness is Kristen Stewart. A few months ago when she was interviewed by Jay Leno my mom and I both noticed that she could simply not sit still during the interview. She fidgeted constantly, so much that it was distracting. It looked as if it were more than nerves, like she really couldn't stop it. I fidget/move around constantly to keep myself from passing out. This is something I have done instinctively since I first got sick, I just didn't realize why I was doing it. We watched Stewart in 'The Yellow Handkerchief' on Netflix the other night. In her role she exhibited some hypermobility in the ballet moves. There were also no scenes were she sat perfectly still. I have yet to see a Twilight movie so not sure if she exhibits the same tendencies in all her films. The other day she was interviewed for a local program where I noticed she had a taped right wrist...signs of EDS perhaps? For the record I have been told that Kristin Stewart is my celebrity twin. Probably the pale skin.

*Please remember my opinions on this blog are purely speculation. I do not have any medical evidence to support my claims other than what I have read on the Internet. Everything here is pure conjecture.

Does New Diagnosis Explain Everything?

Warning: This is going to be my own personal blogtherapy session. Meaning I need to get everything off of my chest and the racing thoughts out of my head tonight so I can get some damn sleep. A big thanks to Rusty Hoe over at Living with Bob for reminding me just how therapeutic blogging can be, especially during life's toughest moments.

Yesterday's trip to the geneticist was an interesting experience. I saw a geneticist and a genetic counselor at a nearby children's hospital where they primarily deal with children and mothers-to-be. Originally my appointment was scheduled for April of 2012 but there was a cancellation yesterday so they called me two days beforehand to see if I would be available to come in early. I was hoping to get in sometime before next year of course but I had no idea it would be so soon so didn't have much time to mentally prepare myself. Just hours before the appointment I contemplated cancelling it completely. Wasn't sure I was ready to know yet or if I ever wanted to know for that matter.

I already know that I have postural orthostatic tachycardia syndrome and temporomandibular joint disorder which are both incredibly tough to manage on a daily basis, along with a few other minor medical conditions like gastroesophageal reflux and sinusitis which I can deal with. I did not particularly want another hard-to-pronounce diagnosis to add to the list. And ehlers-danlos syndrome, EDS for short, is a difficult one to say the least. It is an inherited condition that effects the collagen production in the connective tissues of the body, which of course, are located all over the body. It primarily effects the joints and skin, however it can also effect the eyes, heart, gums--basically anywhere that connective tissues reside. As you already know or can imagine, having a condition like this can impact nearly every part of the body and often explain the unexplainable. EDS predisposes people to both autonomic dysfunction and joint instability. In other words, both POTS and TMJ are merely manifestations of defective connective tissue.

To quote my friend Claudia's analogy, the glue holding normal people together has the strength of concrete while the glue holding an EDS patient's body together has the strength of bubblegum. Now, on the bright side, people with EDS are very flexible and have soft skin. On the downside, it can be a physically disabling condition and depending on which subtype of EDS is involved, can also be life-threatening.

So, do I have EDS? Well unfortunately the answer is yes. The geneticist took a thorough medical and family history and then conducted the physical exam. This woman was very thorough, measuring the circumference of my head and the length of my fingers. She even measured my ears. She also checked the uvula in the back of my throat to see if I had one or two. She was pleased to find that I only had one. I scored a 6 out of 9 on the Beighton Scale. The minimum for diagnosis is a 5 out of 9 so I am hoping that a 6 means I have a mild case. I have Type III or the hypermobility type which is generally thought to be the least severe. She examined the skin on my arms, face, abdomen and shins and determined that it was soft but that I was not subject to abnormal scarring or excessive bruising as found in many of the classical and vascular cases. They were both very confident in their diagnosis which reassured me, at least to a degree, that EDS is to blame for everything that has happened to my health the past four years.

I left the geneticist's office yesterday with a 30-page stack of literature regarding the condition. They gave me this document from NIH which is thought to be the current gold standard in guides to management. They also printed off some helpful info from The Ehlers-Danlos National Foundation. Both the genetic counselor and the geneticist both seemed to know their stuff and assured me that although this is not extremely common, it is certainly not uncommon and that there are thousands and thousands of people living with EDS in the United States alone. It is estimated the 40% of people in the country of Chile have some form of EDS.

In a way, I am relieved to have the diagnosis part over and done with. I think my gigantic health mystery has been solved. The missing puzzle piece has fit into place. I still don't understand why my joints have never given me any trouble in the past until I turned 22 and why all of a sudden after that fateful wisdom teeth surgery I fell instantly ill with both POTS and TMJ. I still wish I could turn back time and never had had that surgery. I am convinced that I would still be healthy today if I hadn't had that surgery, with or without an EDS diagnosis. To be perfectly honest, if I didn't have POTS, I probably would have never known I had EDS.

Growing up, being flexible never posed any problems for me. I never sustained any injuries and I never suffered any aches and pains. In fact hypermobility probably offered me a bit of an advantage in the ballet world. My teacher always said I had perfect turn-out. And it was pretty effortless. However I can't help but look back and wonder how many of the girls I danced ballet with may also have EDS considering some of them were even more naturally flexible than I was. Back when I was a kid before the Internet had taken off, I think it was really a matter of lack of awareness that any conditions like this even existed. Access to information has improved considerably since then so now people are able to Google any medical condition under the sun and get instantly connected to online communities, resources and services pertaining to any given condition.

Part of me wants to contact Lifetime TV's Dance Moms and tell them to get their kids checked for EDS. I believe this condition is prevalent in the dance world and perhaps it's not good to encourage joint hyperextension at an early age, if at all for people with connective tissue disorders. Don't get me wrong, I love ballet. Probably in large part because it came naturally for me. I wouldn't want any of the girls on Dance Moms to quit doing what they love (I am a huge fan of the show!) but just for them to have the opportunity to be aware at an early age so they can take precautions in case any of them do have EDS or something like it.

Because I am still new to all of this, I definitely have a lot to learn. Any guidance is much appreciated. I do have a few questions for those of you who have been in my shoes before. I plan on starting off slow with a few sessions of physical therapy that I can replicate at home. Which activities best stabilize joints or strengthen the surrounding muscles safely with minimal risk of injury? Are there any specific exercises you would recommend for hypermobile knees, elbows and shoulders? Have you tried any methods of natural pain relief that have been effective?

I read in the NIH document that 1 in 20,000 people have the hypermobility type of EDS. However estimates are as high as 1 in every 5,000 people. Rest assured, fellow zebras, when people tell us we are a one of a kind, it is true! Which brings me to my last and perhaps most lighthearted question: why is the EDS mascot the zebra? It is a lovely animal, I just don't understand the significance. Does anyone know the history behind it? I'd be interested to hear it!