Things To Be Thankful For

As I sit here achy and slightly feverish with a sore throat, nostrils I can't breathe out of, and eyes that feel like sandpaper, I figured why not reflect on a few of the positives in my life. Sure I am a little late for Thanksgiving (precisely when I contracted this superbug from my germ-carrying little cousins), but better late than never, right? Practicing an attitude of gratitude is supposed to have health benefits. Here is my top ten list of things I am thankful for this season. It's a mixed bag my friends. And spoiler-alert: I'm about to get pretty darn self-disclosive here.

1) My mom. Without her I would certainly cease to exist. She has loved me and taken care of me for 26 years, as a single parent for the last 20. I know raising me hasn't been easy on her financially or emotionally yet she still did a darn good job as a parent. Growing up she made sure I had every opportunity at my disposal. This has been a particularly tough year for me not just physically having to adapt to the new EDS diagnosis, but also emotionally from uncovering my foreign father's shady past. I corresponded with he and my grandmother earlier this year and the more I learn about them the more thankful I am that my mom and her side of the family raised me here in the great US of A. I have always been slightly curious about my father but now I know the truth. As far as I'm concerned he is a heartless, pathetic excuse for a human being. I am so glad my mom protected me from him all these years. I have come to the conclusion that it is healthier to never let him interrupt my life again, never speak to him again. But on the bright side, at least I can stop wondering about him and start appreciating the great family I do have in my life, my mom especially.

2) Answers. By answers I am primarily talking about my EDS diagnosis. Sure, it is crappy news. Very crappy news. I may be plagued with chronic pain for the rest of my life and may never be able to have biological children, but at least I won't be left in the dark to wonder why. Things are less scary when we have labels to put on them. I like to feel that I have some semblance of order and control over my health, so having a name to put on my constellation of symptoms should at least help inform my doctors and help me to not inadvertently hyperextend my joints anymore.

3) Friends. This goes for my in-person friends who have stuck around (even though I am not much fun anymore!) as well as my online family. I have met so many wonderful young women online whose stories and symptoms are all too similar to my own. It is so refreshing and comforting to have a 'family' who completely understands and empathizes with the things I am going through. Conversely, I love being able to lend an ear, some advice or just plain friendship to such amazing individuals. One thing I know to be true: POTS and EDS patients are good people. Some of the best in the world in my humble opinion. I am not sure where exactly I would be without the friendship and support of my online family. They have come to my rescue many times! I swear, they are all smarter than my doctors too.

4) Food. This may seem a bit silly to some of you, but I am thankful that I am able to eat (most) of the foods I love with minimal complications. After being on a liquid/mushy diet so much because of TMJ, being able to chew real food brings me great pleasure. Especially red velvet cupcakes, homemade fajitas, pizza without red sauce and double fudge cookie dough blizzards to name a few of my favorites. I also like a few healthy foods too but tend not to get as enthused about eating them.

5) Television. My window to the outside world beyond my bedroom. Television has been a constant in my life ever since I was a small child. I have fond memories of watching 'The Nanny,' 'The Cosby Show' and 'Full House' with my great grandmother nearly every night for as long as I can remember. Out sitcom ritual was always comforting to me, and even now I find myself revisiting those memories regularly. Just me, Big Grandma and my mom watching TGIF together. That is my idea of perfect family time. It should come as no surprise to any of my relatives that I chose to make a career out of TV, even if it was short-lived. Even now, television is often what bonds my friends and family together. Except now sitcoms are replaced with the crazy reality TV show of the day for our daily fodder. Pop culture in the background creates the soundtrack to my life.

6) Work. I feel very fortunate to have finally found a stable, flexible, part-time, work-from-home position that utilizes many of my previous skills from the TV and PR worlds. It doesn't quite pay the bills but I feel valued and productive again all while telecommuting. Most importantly, this job has afforded me the opportunity to feel a part of something again. The fact that I am contributing my skills to a non-profit I believe in makes it even better.

7) Relatives. Certain ones in particular. My grandparents have always been very involved in my life and genuinely interested in how I am doing and what I'm doing. It is nice to know I have kind grandparents like them who I can count on for anything. My cousin Michael has also been very helpful during this time. He is one of the only relatives I can think of who asks how I am doing and recalls the specific details of POTS/my life in general. I remember the day when he was born and can hardly believe he will be done with high school soon. I am proud to call him my cousin.

8) Music. Although I am longing to get back in the front row at concerts again, it is nice to still have music in my life via Pandora.com or my old-school ipod nano. Sometimes it is nice to tune out the world around me and escape into a song. You can take the girl out of ballet but you can't take the ballet out of the girl. I sometimes like to mentally choreograph a song in my head. I find that envisioning choreography to music makes exercise like recumbent biking much less tedious.

9) Technology. I'll admit, I definitely have a love/hate relationship with technology, but it has made my life easier overall. Without social networking tools like Facebook and Twitter, it would be much harder to stay connected to everyone in my life. That said, I am also thankful for my cellphone with cheap, unlimited minutes!

10) Home. With the high cost of living right now, I am very fortunate and thankful to have a roof over my head, once again thanks to my wonderful mother. Having a hand in decorating our home also makes me very happy. I often wonder if interior design is a career I should have/could still go into someday. It distracts me from my immediate health concerns and reminds me how important cultivating a sense of place really is. Especially for those of us who spend a disproportionate amount of time at home. Being comfortable and surrounded by beautiful colors and objects I love has become more of a priority for me in recent years.

Something else you can do in the safety and comfort of your own home is the gratitude dance. I highly recommend it. If you're able, start doing the gratitude dance at home each morning just for kicks. If you're seated or laying down, just do the arms or legs, whichever is most comfortable. Do it in public if you dare. It really gets the endorphins flowing!

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.

POTS Letter For Students by Dr. Ahern and Stacy Reed, RN

For those of you POTS patients who are still in school and find yourselves struggling to get to class and managing to stay conscious and alert once you get there, this letter may be beneficial to give to your teachers, professors, school nurse or guidance counselor. I sure wish I would have had something like this to distribute to my professors during my senior year of college when I first fell ill with POTS. It would have made my academic life much easier and it would have been much easier for my instructors to understand exactly what I was going through. Trying to explain such debilitating and peculiar symptoms to people is often half the battle in my opinion. Luckily POTS patient Stacy Reed and her doctor Thomas Ahern have teamed up to create this letter which helps bridge the communication gap between students suffering from POTS and their instructors. Please feel free to use their verbiage and distribute this letter to your own teachers and professors, anyone who needs to know what you're going through on a practical level.

RE: Postural Orthostatic Tachycardia Syndrome (POTS)

To Whom It May Concern:

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome. This is a form of Dysautonomia, which is a malfunction of the autonomic nervous system, the system that regulates all of our automatic functions, such as heart rate, blood pressure, temperature regulation, blood flow, etc.

Patients with Dysautonomia often present with numerous symptoms. These include: loss of consciousness, a feeling that one is about to pass out, intermittent rapid heart rates, very low blood pressure, or significantly elevated blood pressure. Patients also describe symptoms of increased anxiousness, excessive sweating, recurrent headaches, dizziness, low-grade fevers, constipation, diarrhea, abdominal pain, and nausea.

Another symptom that impacts one’s school and work performance is the presence of periods of impaired cognitive function. Individuals who experience this often describe it as a “brain fog.” Patients with Dysautonomia are extremely sensitive to warm environments; avoidance of these environments is suggested. Prolonged periods of standing are extremely difficult, so patients may request to sit or lie down during class or work. As a result of these symptoms, individuals may also present with depression.

Intermittent absences from work and school are common.

It is imperative that patients have access to their prescribed medications, as well as fluid supplements and salty snacks. Access to fluids are necessary during class or work.

Other accommodations requested of schools on behalf of a patient include:

• Avoidance of known symptom triggers when possible.
• Permission to record classes and/or lectures, which can be reviewed at a later time.
• Longer test-taking times, 50% greater time.
• Communication with teachers of the individual’s condition, affirming that absences and slight delay in submission of course work may be necessary.
• The school nurse should be made aware that the normal sitting down vital signs are not adequate for these patients; orthostatic vital signs must be taken, supine, sitting, and standing heart rate and blood pressure, as well as the objective and subjective signs and symptoms in each of these positions.

It is important to understand the disabling nature of this condition. Although it is invisible to those looking on, it is very real to those experiencing it. Research has shown that patients with POTS have a quality of life similar to those with congestive heart failure or chronic lung disease.

(Information referenced from Thomas Ahern, MD, FACC; provided by Stacy Reed, RN, RRT-NPS November 2011.)

Violent Vertigo!

Last night I fell asleep around 1 am (that's actually early-ish for me and therefore a successful bedtime) and woke up from a nightmare around 6 am. I dreamt that I was in a rowboat with my mom at sunset and the water was peaceful. When we came to shore however, a live weasel climbed into our boat and on top of me. It bit me on my left hand. My mom grabbed the weasel in a bag and took it with us to the nearest medical center which was busy and full of young doctors- in-training flurrying around, none of whom were able to help tend to my weasel wound. They did say that they were testing the weasel for rabies, to make sure I wouldn't contract it from the bite. My dreams are quite detailed sometimes.

At that point I awoke from sleeping on my right side (which I normally never do because it tends to hurt my jaw). My jaw did not hurt but when I opened my eyes everything was spinning horribly. I shut my eyes again and tried to roll over onto my back. Still spinning and spinning. I shut my eyes for a few more minutes on my back and then tried to sit up a few inches slowly. More spinning. This cycle of me trying to gently reposition myself or sit up went on for about a half hour or so before it finally subsided. I managed to get in a few sips of water and about half a bottle of boost that had been sitting on my nightstand and once the dizziness had passed I fell back asleep for about five more hours but did not lay back down and slept sitting up the rest of the morning because I was afraid the vertigo might recur. All in all I slept for a total of ten hours last night (that's a lot of sleep for me in the same night!) although it was broken up for about an hour so make that two five hour naps. Around noon I woke up groggy and exhausted from another dream where I was jogging and then watching hula dancers walk on water beachside at sunset. Not a scary dream but supernatural and vivid nonetheless. What did I watch before bedtime to elicit such vivid dreams? Nothing but an episode of 'What Not to Wear,' harmless and largely lighthearted entertainment in my book. I never watch anything too heavy before bedtime because I know I'm prone to nightmares.

What scares me much more than the nightmares though, was the vertigo I experienced last night. I have grown used to being lightheaded and experiencing the all-too-familiar pre-syncope sensation but this dizziness was spinning, violent, uncontrollable. Normally when I feel a little dizzy it is relieved by laying down flat. This vertigo was not. Something similar happened to me when I awakened in the early morning a year or so ago but the spinning didn't last this long. I can't help but wonder what caused it considering my blood pressure and heart rate appeared to be normal even while dizzy according to my accurate automatic monitor. My gut instinct tells me this episode wasn't blood pressure related. When it happened to me once before a physical therapist told me there were these inner ear crystals inside everyone's head that sometimes detach and cause positional vertigo. There is no definitive test for these elusive ear crystals and no real treatment except to try to reposition the crystals back into a normal place to alleviate the vertigo. There are also other more serious causes like Meniere's Disease which is apparently quite rare. Then again, so is ehlers-danlos syndrome and POTS, both of which I am afflicted with, so I never know what other rare illness might strike.

My theory at this point, although not incredibly scientific, is that I may have somehow cut off the circulation in my own neck during my sleep because of the odd position that I woke up in and the fact that the ultra-firm pillow was uncomfortably pressed into my neck. I have been vertigo-free the rest of the day once it subsided. I have also remained upright all day because I am scared to get it again. Every time a strange and debilitating new symptom like this occurs I live in fear that it will return again, or worse, that it may never go away. That's what I was thinking this morning as I had to lay there perfectly still in silence with my eyes shut held hostage by the violent vertigo.

Hopefully this attack was random and will never happen again. My sleep had been getting so much easier lately and I finally felt like I had a handle on it until now. Now I am scared to go to bed for fear of waking up to another vertigo attack. I really hope it is not somehow related to my ears. If I lose my hearing and balance I will not be a happy camper. All I can think on days like these is wow, I must have been quite a terrible person in a past life to deserve all this! Maybe I'm being a tad dramatic here but really. Can't I be done dealing with new medical conditions for now? The two majorly debilitating ones I have already are quite enough to manage.

On the Lighter Side of Life...

After about a week of maintaining the 'woe is me' attitude since the geneticist diagnosed me with Ehlers-Danlos Syndrome, I am finally starting to get my spirits back up to normal. The other day a friend of mine even complimented me for getting dressed! Nothing fancy, just jeans and a tee, but it was a vast improvement from the grungy pajamas I had been sporting.

Tomorrow is my first (and hopefully only) day of physical therapy to learn a home joint stabilization exercise regime and learn how not to hyperextend my joints. Something I have probably been inadvertently doing for years. I definitely hyperextend my knees when I stand, I just never knew what it was called before. It's so funny how suddenly putting a name to things can make you more aware of them. I never realized there was anything wrong or abnormal about the way I stood. No one had ever called it to my attention before. I recently stumbled upon an interesting blog about dance injury and hypermobility. It really helped to clarify for me how movement is linked to hypermobility and vice versa.

In addition to reading informative blogs about EDS, I have also been engaging in a little good old-fashioned TV-watching escapism. Seeing as it's nearly 2 am and I can't sleep, I figured I would post all about my Fall television schedule for your reading pleasure.

Mondays it's all about Being Erica. The fifth and final season promises to answer all questions and tie up all loose ends of the Erica time-travel saga. I watch this on CBC at 9 pm. The latest season is not available on any U.S. stations yet although rumor has it ABC is already slated to remake it...odd considering the Canadian version is in English. Guess the American way is to ruin, I mean remake, perfectly good foreign shows (Can you say, Skins anyone?)

Tuesdays I am sticking with Glee. So far this season is already much more promising than last season with the addition of The Glee Project winner/Celtic Thunder crooner Damien McGinty alone. He plays a foreign exchange student whom Britney mistakes for a magic leprechaun. He decides to play along with her fantasy by granting her a box of Lucky Charms filled exclusively with marshmallows. It was by far the most priceless Glee moment of all time.

Wednesdays I am hooked on Revenge and have gotten several of my friends hooked as well. I was a huge Brothers & Sisters fan but sadly ABC (what some call the 'Already Been Cancelled' network) aired the series finale unexpectedly last season due to a decline in ratings. Luckily Emily VanCamp had a newer and perhaps much more promising role up her sleeve. On Revenge she plays the duplicitous Emily Thorne, a young woman hell-bent on achieving the ultimate vengeance, artfully taking down her framed father's former enemies one by one in an elite Hamptons neighborhood she returns to as an adult, posing as the poised and innocent girl next door. The writing is smart, the acting is good, the plot is fraught with unpredictable twists and turns and the male eye-candy is currently unmatched on primetime TV. Three cute male main characters? That's what I call good television.

Thursdays I am not ashamed to admit that I tune into the new Beavis and Butthead on MTV. In my opinion, they are every bit as funny as I remember from watching them as a kid. Beavis and Butthead always make me forget any serious matters at hand and have a few good laughs. They are having a field day being MTV's resident reality television commentators. Listening to their humorously blunt commentary on Jersey Shore and 16 and Pregnant is endlessly amusing. They simply articulate what the rest of us are probably thinking when we watch the debaucherous Snookie in action.

On Fridays I will occasionally watch Extreme Makeover: Home Edition but I can't say that I'm hooked on it. On weekends I prefer to engage in Smallville marathons with a friend who got me hooked on the series. We have been meeting for months now to watch the entire series together. We are only half-way through season three but it just keeps getting better and better. I am normally not a sci-fi fan, but this series is infused with enough good music, pop culture references and exquisitely built men to make me happy. And believe it or not, Clark Kent, later known as Superman, is actually a highly relatable character for those with chronic illness. His abilities render him different. He is essentially an outsider to his peers and only shares his secret with a very small group of people for fear of persecution. Kind of reminds me how getting sick has often made me feel like an outsider among my 'normal' friends.

When I'm not watching TV, I'm probably listening to Robert Schwartzman's new album Double Capricorn. I am a huge fan of him in Rooney, was a fan of Solobob, and now a fan of his latest solo endeavor as well. This album is slightly reminiscent of Rooney which is probably why I am so hooked on it. It definitely reminds me of happier times standing front and center in the crowd at concerts. I would give anything to be able to do that again without having to worry about passing out publicly. Maybe someday. Since Robert has yet to release a video for this album, I'll leave you with a video from another one of my favorite bands, Our Lady Peace. I heard this one during a Smallville marathon the other day and had forgotten how much I love this song!

Our Lady Peace - Somewhere Out There - C by Elemiste

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!

The Missing Puzzle Piece?

When I first fell ill with mysterious symptoms over four years ago, I had never even heard the terms "tachycardia," "POTS" or "Ehlers-Danlos Syndrome." It would have all sounded like a foreign language to me. Soon after my POTS diagnosis I learned that many of my fellow POTS friends also suffered from another mysterious illness called EDS. It sounded awful to me but I wasn't the slightest bit worried that I may have it since no doctor had ever mentioned it to me before. Many of my EDS friends have also been sick their entire lives and mine hit all of a sudden at 22. Prior to that year I had been perfectly healthy all through childhood, adolescence and even those first few blissful years of early adulthood. Never a broken bone, never a hospital visit, never even contracted chickenpox or pinkeye while they were going around my ballet classes.

Looking back on my childhood, I had a few ear infections, a few bouts of strep throat, and pneumonia when I was about 5 (probably the sickest I had ever been as a kid). None of those common childhood illnesses brought me down for long. My mom would take me to the pediatrician who would prescribe antibiotics and I would always bounce back and be as good as new in a week or two. When I was about 5, I also had a large baker's or popliteal cyst on the back of my knee. The doctor wasn't too concerned and said it would disappear on it's own. It must have popped after I was buried in the sand one afternoon. When I emerged from the sand the large cyst was gone and I hardly remembered having it at all until my mom mentioned it the other day. Turns out baker's cysts are actually a sign of EDS. My pediatrician was not the slightest bit concerned about it at the time.

Fast forward to just after my 22nd birthday and I developed an infection around one of four impacted wisdom teeth, and also, another benign cyst on my jawbone. I had intense pain right around my lower left tooth and jaw and swollen gums. The doctor was certain it was an infection that required antibiotics and that I would need to have my wisdom teeth removed when the infection cleared because there was simply no room for all my large teeth inside my small mouth. For some reason, I had a bad feeling about getting my wisdom teeth pulled and had successfully avoided the procedure during my first year of college because I had come down with a cold during winter break and the oral surgeon said to cancel. Sure I was nervous about the surgery, and secretly glad that I didn't have to have it freshman year, but I had no idea that getting my wisdom teeth pulled for real during senior year would change my life forever--and for the worse.

I would be lying if I said I was okay with being sick, that I have come to completely accept it, or that everything happens for a reason. The fact is, I was angry about it. I am still angry about it. In the whole Stages of Grief thing, I have barely moved past the denial phase but now pretty sure I'm stagnating in a perpetual state of alternating between anger and sadness. The only thing that gives me any solace is knowing that I've met so many wonderful people who understand exactly what I'm going through. However, it also pisses me off greatly to know that all of my amazing POTS/EDS friends are suffering, and many are worse off than I am. They are some of the nicest, smartest, most talented people on the face of the earth and they are sick also. I am not sure why God/the universe/[insert god or goddess of your choice here] would allow so much senseless suffering to happen to such wonderful people. Why do the criminals and convicts who have committed heinous and violent crimes often go on to have perfect physical health? It seems like some sort of cosmic joke to me sometimes. What also bothers me is my healthy peers who abuse their bodies on a daily basis. The ones who smoke a pack a day, drink to get drunk and try all sorts of crazy drugs simply for the "high." If they had to walk around feeling drunk every day of their lives without the chance to ever feel sober would they still drink? I feel like a drunk who can never sober up. That's what being chronically lightheaded, dizzy and nauseous feels like to me. Being drunk. And to be quite honest I'm not even sure I have ever even been that drunk. But the closest I have come to being drunk was after three drinks on a full stomach at 21 years old. I felt so crappy the next day that I vowed to never consume more than one drink in the same day ever again. Drinking has never really fascinated me but especially not now. I have never smoked a single cigarette or tried an illegal drug in my life yet I am still sick nonetheless.

Yesterday I was feeling pretty sorry for myself. I had an appointment with an orthopedist who was very knowledgeable and thorough, and for once, a doctor who was also a very nice and genuine person. He examined nearly every joint in my body and tugged on my skin. He referred to my joints as "loosey goosey" and said that I definitely have hypermobility or joint laxity and that that is probably the reason my joints are popping so much. As he examined my knees my hips popped. He felt my shoulders and elbows pop. Needless to say hearing that I 'definitely' have hypermobile joints was not good news to me. I am not a ballerina anymore and although my hypermobility probably served me well in the past, it is certainly not doing me any good now and probably won't in the future either. I realize that there is a distinct possibility that I do have EDS and will have to learn to live and cope with that in addition to POTS. On the bright side, he did say that my hypermobility is not severe, and prescribed me a few sessions of physical therapy to work on joint stabilization exercises.

Ironically, while I was in the orthopedist's office, the geneticist's office called to inform me that they had had a cancellation for Thursday (tomorrow) and wanted to know if I could come in early (my original appointment was not scheduled until April of 2012!) I knew I had no choice but to jump on the appointment, but at the same time it hit me that maybe I am not quite ready to know if I have EDS yet...I haven't really wrapped my head around the whole thing yet and sometimes ignorance is bliss.

Although having EDS would explain my persistent case of TMJ, my dysautonomia and now my noisy joints, I wish I didn't know the reality that EDS is incurable and often debilitating. However I suppose the responsible thing would be to find out once and for all whether I have it or not and either complete my medical puzzle with the missing piece or (hopefully) rule it out altogether. After getting the orthopedist's take on things, I am trying to mentally prepare myself for a positive diagnosis. Getting a positive diagnosis will also undoubtedly make me question whether or not I want to have biological children. Whether or not it would be fair or ethical to knowingly pass my potentially painful genes onto another human life.

If I do have it, or even if I don't, I need to do whatever I can to try to preserve and stabilize these noisy joints of mine so I at least won't have to worry as much about getting injured. At least the orthopedist said my knees are pretty sturdy. My elbows are another story. My ultimate fear about having EDS is that it could mean my dysautonomia may never go away. That no matter how much I exercise, how well I eat or how much I will myself to get better, I may never be cured and may never experience life as I once knew it ever again. So if I can just move through and beyond these darn stages of grief I will have to adopt a new worldview, a new approach to life perhaps. If there is a possibility that any of my conditions will be progressive or degenerative, I had better quit waiting around to get better and start living while I still can.

Help Rachel Breathe Merchandise

So many wonderful and talented people are afflicted with EDS and POTS. Rachel Phillips is one of them. She is currently fighting for her life as there is significant lung involvement. Rachel is in need of a lifesaving surgery that has not yet been performed in the U.S. A Swedish surgeon is willing to perform a new groundbreaking procedure on her. Rachel was once a brilliant ballerina, able to breathe, move and live life to the fullest. Let's help give her life back, she deserves it! To read more about Rachel's story and see videos and photos of her stunning performances, please visit helprachelbreathe.com.

The beautiful image of Rachel pictured above was done by talented artist and EDS patient Michaela Oteri. Michaela is not only an amazing artist, she is also incredibly kind and generous and is donating all proceeds raised to Rachel. Check out all the merchandise options at CafePress. You will not only be getting a custom shirt, necklace or poster, you will also be giving Rachel a chance at survival. The merchandise is reasonably priced so spread the word. The holidays are right around the corner and a custom item would be a great gift idea for an EDS patient or a dancer in your life.

29 Days of Giving in Honor of Alexa Simmons

The dysautonomia and EDS community has suffered a great loss from the passing of our friend Alexa Simmons. Her positive attitude and caring demeanor has always been an inspiration. Although she left us too soon, she touched so many lives while she was with us. People suffering from similarly debilitating conditions worldwide all consider Alexa their friend. She was a friend to everyone. Although we're all still experiencing a range of extreme emotions right now (sadness, anger, loss) what I have learned about Alexa tells me she would want us to be as positive as possible right now and channel our collective energy into something positive, whether it's being even more motivated to search for a cure or just extending friendship and gratitude to one another on a daily basis. I often wish I were a gifted research scientist who could miraculously find a cure for our rare and all-too-often overlooked conditions, but let's face it, unfortunately science is not my forte. What I can do, however, is something small but meaningful and positive each day to honor her memory.

A little over a month ago I had the privilege of speaking with the author of one of my favorite books, 29 Gifts. Cami Walker is her name. Cami suffers from MS and experiences symptoms similar to what many of us endure with dysautonomia or EDS. Like Alexa, Cami is another inspiration to me. She lives each day in the spirit of gratitude and giving, even when she feels she has nothing left to give. Although I began my initial 29 days of giving a month ago, about a week into it I stopped when I experienced a minor health setback. Since then, I have been a bit down in the dumps and have not had the inspiration to begin my 29-day gift giving challenge all over again. Now I do. And it's Alexa. I am going to embark on 29 days of continuous, mindful, selfless giving in her honor. I invite you all to join me. Giving is a simple concept and does not have to be done in the monetary or material sense. Giving can be as simple as handing a Kleenex to a stranger in need or visiting an elderly neighbor. Doing what you can for someone else, paying it forward, if you will. If you would like to join me, feel free to log on to the 29 Gifts website, a supportive social network to gather ideas and inspiration or to chronicle your giving journey.

If you are able or inclined to give a monetary gift, please consider donating to EDSNC in Alexa's memory.

My Medical Records: Fact or Fiction?

As I have been proudly checking things off of my ever-expanding 'To Do' list, I thought I would share that I finally ordered and received my medical records (the vast majority of them anyway) from the past six years. After a cursory review of them it is abundantly clear exactly when I got sick as my heart rate went from 62 in the office a few months prior to getting sick with POTS to over 100 at nearly every subsequent appointment. I only had a few appointments during the two years before I got sick, one for a sinus infection and one for painful periods. Other than that, I was healthy as a horse. Then in September 2007 the doctors appointments, and hospital visits, came nearly on a weekly basis for several months. Each time I suffered tachycardia, palpitations, weakness and fatigue.

My hospital bloodwork revealed a low potassium level several times. The doctors and nurses informed me at the time while they forced me to consume a sickening concoction of concentrated liquid potassium drink to bring my level back up to normal. What they neglected to tell me during all these hospital visits was that I consistently had other 'high' and 'low' markers in my bloodwork that didn't fall within normal range. I was a bit shocked to discover this while leafing through my medical records. My mom would always remember to ask them in the hospital (in case I didn't remember to ask or couldn't) if all my bloodwork looked okay and was in the normal range. They would always reply, "yes, everything looks good." So much for trusting ER docs. As long as you're not about to immediately die, they send you on your way home with instructions to take it easy and follow up with your regular doctor. Lovely. At the time my regular doctor was a woman who only knew how to shove antidepressant samples down her patients' throats.

Another thing that interested me about my medical records: certain doctors would make snide remarks in their notes about my mother, my neighbor or my grandmother accompanying me to appointments, saying that they were very vocal, or answered too many questions on my behalf. These were the times I was so sick I could hardly walk into an appointment on my own or speak for myself. I was glad they were there to advocate for me and make things a bit easier on me. But according to my records a few of the doctors I saw seemed to mind. Their jobs are made much easier I'm sure when they don't have "difficult" relatives around to answer to. Some doctors can't stand to be inconvenienced, questioned or stood up to in any way. This is not true of all doctors, but a large chunk of them who believe they are superior to their patients and respective families simply because they are the one with the letters behind their name and some general experience (although just about every hospital doctor I've seen has lacked any specific experience in treating or even recognizing dysautonomia).

Enough of my rant for now, just thought I would stress the importance of obtaining and reviewing your own medical records to make sure you don't have other underlying conditions that may be contributing to or exacerbating your dysautonomia. Oh, by the way, I now apparently have "mild central airway disease" as indicated by a chest x-ray in 09 compared to the one I had done in 08 which was fine. Would have been nice if someone from the hospital had told me this back when I had the x-ray done. Not sure what the heck it is, if there's anything I can do about it, or if it even causes any symptoms. I am assuming it's not that big of a deal otherwise the ER doc would have told me about it, right? Not necessarily. If there's one thing I've learned by reviewing my medical history on paper it's that it's never safe to assume anything. It's best to have the proof right there in front of you on paper. A lot of doctors are too lax to care whether they tell you everything or not, many are too busy to give you the full story, and many are just human and make mistakes, forgetting to tell you something that might have been important. Make a habit of requesting your medical records after every important appointment now on. I'm going to make sure I do from now on.