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