Year in Review

Although I don't write a Christmas letter or anything of the sort, I figure my dear blog readers tune in from time to time throughout the year and are probably all too aware of the health goings-on in my life. So I will try my best to keep this brief and not too negative. It has been one heck of a year to say the least!

Let me start with the good. Certain aspects of my health have improved significantly. My resting heart rate is good! Normally anywhere between 56 and 66 beats per minute on any given day. And there have been many days where my standing heart rate hasn't been so bad either! (70's, 80's, 90's, I rarely reach the 100's anymore!) I am always thrilled to check my blood pressure monitor and see relatively normal numbers there too. It helps me breathe easier when I think about how those same numbers used to look a year ago. Can I say my POTS is gone? Well, no. There are days when my HR still spikes upon standing, I still get the occasional dizzy spell and brain fog seems to plague me on a daily basis. But when I compare my symptoms and my numbers to what they were 5 years ago the difference is dramatic. And there are even some days where I even feel somewhat normal.

In terms of chronic pain and limitations however, this has been the worst year of my life. The TMJD pain is unbearable half the time and it impacts my life severely. I have had to drastically modify my diet to soft foods exclusively and master the art of being quiet which has proven very difficult both emotionally and functionally. It is really tough to not be able to make phone calls to doctors or insurance companies. Not to mention not being able to speak to friends and family very often. I have had to shell out $1300 for a home ultrasound machine like the kind they used on me in Physical Therapy after my insurance company cut off physical therapy completely. It is about the only thing that brought me any real relief. I am currently going through the appeal process with my insurance company about covering the ultrasound machine as durable medical equipment for a chronic condition.

A local neurologist also thinks Botox injections would help quell the muscle spasms in my jaw and facial muscles, but insurance does not want to cover that either because it is not FDA approved for anything other than the treatment of migraines (which I am not having). Although my medical insurance does cover TMJD, they certainly don't seem to cover any of the treatments that have worked for me. So the battle continues. Sadly, this type of battle has become all to familiar to many of us. Having to fight for the basics all the while fighting our own battles against our ailing bodies. My wish for the new year is that less people will suffer and struggle with their insurance companies. That we will not have to fight as hard to receive adequate treatment and relief.

May my friends and readers experience improved health and  relief from chronic conditions in 2013. Keep on fighting the good fight and never never never give up!

Holiday Giveaway Courtesy of Katie's Knits!

'Tis the season for fabulous knitted goods! And Katie's Knits has plenty of them! She does everything from custom blankets to handbags, all created with love and care.

It is no surprise that there is a lot of talent in the chronic illness community and Katie's happens to be knitting. I have great respect for anyone who can knit as I simply lack the patience for such painstakingly intricate work. But Katie has a flair for it. She uses the softest, high quality yarn and crafts her creations with convenience and practicality in mind. I am in love with this purple handbag.

And these cute coin purses, which are very handy on a wheelchair.

And these scarves. I am particularly fond of the pink one!

If you'd like to win some lovely knitted goods just in time for Christmas, please comment on your favorite item below and head over to Facebook and 'like' the Katie's Knits page. 

I will be selecting three lucky winners drawn randomly from a Santa Hat on Monday, December 17, 2012. Good luck!

In the meantime, if you'd like to purchase some of Katie's Knits, contact her about a custom creation via her Facebook page to take advantage of special holiday pricing!

Tropical Traditions Gold Label Virgin Coconut Oil Giveaway Winner!

And the lucky winner is...

Congratulations, Liza! Hope you enjoy the product!

And another big thank you to Tropical Traditions for sponsoring this giveaway!

Being Human is Hard Sometimes

I have a huge aversion to vampires. I have not seen a single Twilight movie and have a feeling I'm not missing out on much. I don't buy into the whole "vampires are cool" craze. There are just too many darn vampires on TV these days. So I found myself surprised when I could not stop watching the UK version of Being Human. It came highly recommended by a fellow potsy with great taste in television, so I decided to give it a try. Aside from being permanently scarred for life by a few gory scenes, I actually gleaned quite a lot of good out of this show and found myself empathizing with the main characters' struggle to be "normal" humans.

Being Human features a werewolf, a ghost, and yes--a vampire--as roommates living together in Annie the ghost's old house which George the werewolf and Mitchell the vampire rent from Annie's former fiancé (Annie the ghost is invisible to most people). Later on Annie remembers that Owen her despicable sociopath of a fiancé was the one who pushed her down the stairs, resulting in her untimely death. Annie is definitely the character I related to the most. She cannot be seen and heard by most people and leads an isolated life mostly confined to the house. The characters all seem to spend a lot of time at home, however George and Mitchell are out in society working at a nearby hospital and masquerading as human.

As irony would have it the "monsters" and ghost are not the true evil characters on the show. It is the Catholic priest, the misguided professor and the sociopath fiancee (all real humans) who are perhaps the most evil and seem to lack any sort of profound moral compass. Although they make big mistakes, the non-humans are actually good-hearted and consistently try to help people in spite of their own issues.

Here is how I personally relate to each of the main characters:

Annie: I wouldn't be surprised if a lot of POTS and EDS patients easily relate to Annie the ghost. She spends most of her time at home as a quiet observer of the goings-on around her. She is invisible to almost everyone and cannot be heard either. She cannot really "live" her life as she is a ghost and had all her earthly dreams and goals ripped from under her when she was pushed down the stairs. Her afterlife lacked purpose and she is often struggling to find her place in the world. She is arguably the nicest character on the show and genuinely goodhearted and wholly undeserving of what happened to her. She also wears the same outfit in every episode. Comfy clothes and cute Ugg boots.

George: George is a good-hearted werewolf who wants desperately to lead a normal life. He has to hide his secret from friends, coworkers and even tried to hide it from lovers. Although I don't deem his problem to be quite as severe as the vampire or the ghost's considering he only has to deal with spontaneously transforming into a werewolf one night a month during the full moon, it is still a huge disruption to his life. I relate to George because I too transform into a very unpleasant person during the first few days of my period and therefore I try to lay low and avoid people during that time so I don't say something I'll later regret.

Mitchell: Although I find it hard to relate to Mitchell much at all, a part of me does feel sorry for him. Sympathy for a vampire? That doesn't sound like me at all, but it could have something to do with the fact that he is really, really, ridiculously good looking. Although he has some bad relapses, he tries hard to be a good vampire and not feed on humans anymore. Mitchell perhaps most strongly resembles the drug addict the show's writers had originally intended for his character. He also struggles to form meaningful and lasting relationships with the other characters except for George and Annie that is.

The first three seasons of Being Human (only 8 episodes each!) are currently available on Netflix. I highly recommend this show if you like sci-fi or drama. Be prepared to shut your eyes for a few scenes if you have a weak stomach like me. Other than that it's a great show that can teach you a lot about humanity, values, and perhaps most significantly, the struggle to maintain normalcy with an unwanted affliction. Many of us with chronic illness can relate.

Tropical Traditions Gold Label Virgin Coconut Oil Review and Giveaway!

I have been singing the praises of coconut milk and coconut water on my blog for many months, but just recently I had the privilege of trying Tropical Traditions Gold Label Virgin Coconut Oil. Talk about a multi-purpose product! While you can cook with it, bake with it, add it to smoothies or even take a spoonful straight, you can also use it as a versatile skincare product. It works well as a moisturizer and massage oil. I was pleasantly surprised when I went to a new massage therapist who used Tropical Traditions Coconut Oil in her practice. I had forewarned her about my chemical sensitivities and aversion to strong scents and coconut oil was her solution. As a moisturizer it absorbs nicely into the skin and it does not leave a greasy residue. It smells like fresh coconut and is the PERFECT beauty product for people who are chemically sensitive like me. I like to use it as a post leg-shaving moisturizer.

I have also added it to my smoothies and stir fries but still need to try baking with it. The following video includes a recipe for gluten-free creamy pumpkin cheesecake bars (perfect for fall!) made with coconut flour and coconut oil! Given my current pumpkin/fall obsession, I can't wait to try making this!

I am giving away one 32 oz jar of Gold Label Standard Virgin Coconut Oil as pictured below courtesy of Tropical Traditions!

To enter the giveaway, there are two steps:

First, leave me a comment below and tell me how you'd like to use the coconut oil. I will be drawing one lucky winner from a cornucopia on Monday, November 26.

Second, subscribe to Tropical Traditions Newsletter here: 

Sign Me Up!

Win 1 quart of Gold Label Virgin Coconut Oil!

Tropical Traditions is America’s source for coconut oil. Their Gold Label Virgin Coconut Oil is hand crafted in small batches by family producers, and it is the highest quality coconut oil they offer. You can read more about how virgin coconut oil is different from other coconut oils on their website: What is Virgin Coconut Oil?

You can also watch the video they produced about Gold Label Virgin Coconut Oil:

Tropical Traditions also carries other varieties of affordable high quality coconut oil. Visit their website to check on current sales, to learn about the many uses of coconut oil, and to read about all the advantages of buying coconut oil online. Since the FDA does not want us to discuss the health benefits of coconut oil on a page where it is being sold or given away, here is the best website to read about the health benefits of coconut oil.

Disclaimer: Tropical Traditions provided me with a free sample of this product to review, and I was under no obligation to review it if I so chose.  Nor was I under any obligation to write a positive review or sponsor a product giveaway in return for the free product. 

The What, Where, How, When and Why: Amino Acids

I have grown increasingly intrigued by oral and injectible amino acid therapy ever since stumbling upon lessflexible.com. Amino acids are complicated and I don't claim to know the first thing about them, but I do wonder if they could help improve the strength of our stretchy connective tissues as they did in one young woman's experience. She claims she is less flexible since starting a carefully tailored and administered amino acid therapy regime with her doctor. I would love to be less flexible, as would most EDS sufferers. Amino acid therapy an area that I believe warrants further research in relationship to connective tissue disorders. I am happy to welcome guest blogger Martina from Gracewell Healthcare who graciously tackled the basics of amino acids. 

Essential Amino Acids	Non-essential amino acids
Histidine	Alanine
Isoleucine	Arginine
Leucine	Asparagine
Lysine	Aspartic Acid
Methionine	Cysteine
Phenylalanine	Glutamic Acid
Threonine	Glutamine
Tryptophan	Glycine
Valine	Proline
	Serine
	Tyrosine

The What, Where, How, When and Why: Amino Acids

This guest guest post was generously contributed by Gracewell Healthcare

What: They Are/The Benefits of Them

Amino acids consist of a mixture of carbon, hydrogen, oxygen and nitrogen. The human body naturally stores twenty of these acids. However, another nine must be obtained from food sources. It is absolutely essential that we have every single one of the amino acids, as they each perform a special function. In general terms they combine to form proteins, which are important for the building and maintenance of muscles and processing of the brain. Amino acids have also been found to play a role in weight reduction.

Where: To Find Them

There are a wide range of foods and drinks that are high in protein. Meats such as pork and beef fall under this category and contain the complete variety of amino acids. Less fattening alternatives such as fish and chicken are also complete amino sources. Those individuals who refuse to consume meat or dairy products can still maintain the protein levels by eating vegetables, nuts and whole grains. Health experts advise the consumption of at least 60g of proteins every single day. Some people may even opt to maintain the healthy diet with supplements.

How: To Consume/Recognise/Identify Them

In scientific terms amino acids are formed from a central carbon atom, to which the Carboxlyic acid, Hydrogen, Amino and variable 'R' groups are attached. Amino acids can join together in the formation of dipeptides and polypeptides. They have fairly complex names such as phenylalanine, which is known as a provider of energy and tryptophan, which can combat sleep deprivation and depression. As previously mentioned, the standard amino acids form part of our natural DNA structure. The essential amino acids must be consumed as food or drink.

When: They Come Into Play/Their Function in the Human Body

A high profile scientist by the name of Dr. Elson Haas has stated that around one fifth of the human body is made up of proteins. They are a major constituent part of the eyes, skin, muscle and brain. Without these proteins human beings wouldn't exist. Apart from keeping us alive the proteins and amino acids that they are made up from play a key role in the processing of messages from the brain and generation of energy. People who are unable to maintain their amino acid levels may experience depression, insomnia and extreme lethargy.

Why: They Are Important

It is essential that humans consume foods and drinks containing amino acids on a daily basis. That's because the body uses them in a variety of means, including the building of organ and muscle tissue and development of hormones such as adrenaline. It is definitely worth taking supplements that include vital aminos such as Threonine, which prevents the onset of illness and disease, and  Leucine, which allows for the processing of vitamins, minerals and protein. Anybody who fears that they may not be consuming enough amino acids or requires assistance on the selection of supplements is advised to see a medical expert. 

Zebra Boots!!!

These delightful Ugg boots retail for $240, but will likely last forever.

For a similar look, try Target's rain boots for just $29.99.

Two perfect ways to wear your zebra pride this season!

A Country Girl's POTS/EDS Anthem

Ironically, one of my best friends put this Rascal Flatts song on a mix CD for me on my 22nd birthday right before I got sick. Since then, the lyrics have taken on a whole new meaning. I relate to music much differently now than I did before I got sick. That's what life experience and struggle bring to the table. A deeper understanding and appreciation of language and lyrics. 

You feel like a candle in a hurricaneJust like a picture with a broken frameAlone and helpless, like you've lost your fightBut you'll be alright, you'll be alright
‘Cause when push comes to shoveYou taste what you're made ofYou might bend ‘til you break‘Cause it's all you can take
On your knees you look upDecide you've had enoughYou get mad, you get strongWipe your hands, shake it offThen you stand, then you stand
Life's like a novel with the end ripped outThe edge of a canyon with only one way downTake what you're given before it's goneAnd start holdin' on, keep holdin' on
‘Cause when push comes to shoveYou taste what you're made ofYou might bend ‘til you break‘Cause it's all you can take
On your knees you look upDecide you've had enoughYou get mad, you get strongWipe your hands, shake it offThen you stand, yeah, then you stand
Every time you get upAnd get back in the raceOne more small piece of youStarts to fall into place, yeah
‘Cause when push comes to shoveYou taste what you're made ofYou might bend ‘til you break‘Cause it's all you can take
Yeah, then you stand

To Share or Not To Share?

Although I haven't yet officially committed to the WEGO Health Blogger challenge to blog each and every day during the month of November, I found myself intrigued by many of their prompts including the "disclosure post": how I decide what I do share and what I don't share with my readers.

The answer is simple: I share everything. Everything I've learned, observed, experienced throughout my journey with dysautonomia. Anything and everything that may possibly help my readers gain insight into their own health crises. I feel it is my job to help fellow sufferers in any way I am able.

My personal philosophy (and my nature) is to be highly self-disclosive. Possibly too self-disclosive at times. I lay it all out there. The good, the bad, the ugly. Having a chronic illness is anything but pretty and I am not so good at sugar-coating things. So again, I share it all. Sure, you personally may have no interest in reading about my persistent acid reflux or no desire to read me ramble on about the inherent injustices of invisible illnesses, but someone might. Some reader out there in the world may identify with something I have written. They may feel the same way I have. Or experienced a similar struggle themselves. And if I can help even one person feel a little less alone, then my efforts were not wasted.

When I began blogging, I didn't anticipate having so many readers, or any at all for that matter. I started this blog as a way to cope. To get my frantic, troubled thoughts out of my head. The act of writing has proven to be therapeutic for me. I feel much better after getting all the crap off my chest. But now that I have been blogging for a little while, Defying Gravity has evolved into a more well-rounded blog complete with fun stuff like giveaways, guest bloggers, product reviews and pop culture recommendations. Over time I would like to start sharing recipes, how to's and maybe even vlogs. But for now I am proud of myself for simply managing to post on a consistent basis and hope to continue blogging everything I can in the future.

Fall TV Picks!

Sometimes, with chronic illness, one is forced to watch a lot of television. With a bad head cold, one is awarded the opportunity to catch up on all this television. Good thing I am a bit of a TV buff. What am I watching this season? Here are my favorites.

Sunday night: Revenge

Monday night: Dancing with the Stars All Star Edition on ABC, Hoarders and Intervention on A&E

Tuesday night: Hart of Dixie on The CW, Abby's Ultimate Dance Competition on Lifetime, Parenthood on NBC

Wednesday Night: The New Normal and Guys with Kids on NBC

Thursday Night: Beauty and the Beast on The CW, Glee on Fox, Don't Trust the B in Apt 23 on ABC

Friday Night: Malibu Country and Shark Tank on ABC

Saturday Night: Saturday Night Live on NBC

The Head Cold from Hell

It has been a long time since I've had a cold of this magnitude. What began as a little tickle in my throat Halloween night was a full blown whopper of a cold by the next morning. Nothing is worse than being sick on top of sick. I have a fever. My head hurts. My nose is running a mile a minute. Yet I still can't breathe out of my right nostril. My eyes are dry and bloodshot, rapidly resembling those of Natalie Portman a la Black Swan. And my TMJD is in another rip roaring pain flare thanks to all the violent sneezing I've been doing. I am about ready to knock myself out with Nyquil. Or maybe a Hot Toddy. But it's probably not a smart idea to mix any of that with Tylenol. So I am playing the waiting game. Waiting for this misery to abate.

As luck would have it, I had an appointment with an ear nose and throat doctor yesterday that had been scheduled for a long time. On day one of a bad cold. He said it will take 5-10 days before antibiotics are warranted. Right now it is an old-fashioned viral head cold. And there's no cure for that but time according to the ENT anyway. But the good news is, my hearing tested in the normal range despite the ringing in my own ears being much louder than any of the audible beeps. I passed that test by sheer luck I think.

Does anyone have any safe and effective home remedies for the common cold? My regime currently consists of steam inhalation, Halls cough drops, vitamin c, hot tea and spicy salsa. But what I really need is some sleep. And of course I gargle repeatedly to prevent the germs from having a party in my throat thanks to the timeless teachings of The Cosby Show.

Halloween Hauntings

Do you ever wonder what might have been if you hadn't been struck by chronic illness at an early age? For some of us, the onset was gradual. But for others, like me, the onset was startlingly abrupt. One day I was dancing and hosting talkshows and the next I was down in bed barely able to move. Five years later, I have seen some significant improvement but my current self is still a far cry from my former self who could tackle multiple tasks on a daily basis without thinking twice about it.

Ever since I got sick, I have been haunted by my former self. Valedictorian voted "most likely to succeed," president of (nearly) every high school organization and college graduate with three degrees. I had the world at my fingertips it seemed and it was ripped away from me in a heartbeat the day I got sick. People from my past who don't know the whole story of what happened to me must assume that I've become a failure or a recluse, not living up to the outlandish expectations imposed on me by a small town and its overly-interested inhabitants.

While it's true that I care entirely too much of what others think of me, sometimes I can't help but feel sorry for myself. Maybe it's how the chronically ill are conditioned. People are either pitying us, or not believing us. There is very little empathy shown by others. Trying to observe my own situation objectively as if I were an outsider looking in on my own life, I must admit it's a pretty pathetic picture most of the time. Even older people in poor health pity my life, or shall I say existence, as a twentysomething. They know that when they were my age, or even in their thirties, forties, fifties, they were able to do as they pleased without any significant bodily restictions or limitations imposed on their lives. They traveled, raised families, played sports. I do none of those things. I am stuck in every sense of the word. Every now and then, I see a glimmer of my former, pre-illness self start to surface but then quickly fade when my physical symptoms kick in, reminding my current self that it cannot do what it used to, or what it had planned to do in the future.

What would my life look like today if I weren't sick? I ask myself that question all the time. I would likely be living in a high-rise minimalist penthouse in the city with a career that I enjoyed and comfortably afforded my lifestyle. I would have a vibrant social life filled with people my own age and dinners rarely eaten at home alone. I would barely sleep because I would be too busy enjoying life, but when I did sleep it would be restful, restorative sleep. I would shop every single day if I so chose, simply because I'd have the ability to remain upright for long periods. I would be building a house that I designed myself and planning for a future marriage, family, etc. I would take tons of road trips. And sometimes, I would drive for miles and miles and miles just because. I would go to Australia. Heck, maybe I'd live there for a bit. I would dance ballet again, or even teach it. I would live my own life and live it well without caring about what anyone else thought. I would never have doctors appointments to deal with. I would be happy.

I often wonder why those who lack ambition in life seem to never really get sick. Many people would be content to stay home day in and day out living a life of isolation with little stimulation. But not me. This type of existence is for the birds, certainly not for people like me. I can't pretend I am content with my situation. I am not there yet. I want things to change for the better in a big way. I want to be 100% my old self again. That girl had reasons to get up in the morning and push herself and her body let her do everything she wanted to. I want my body to cooperate with my mind's wishes like it used to. I want them to be in sync with each other so that I can be my complete self again instead of the sad ghost of my former self I have become.

Fall Update

I love the fall. It is definitely my favorite season. We had been spoiled with pacific northwest sunshine and perfect crisp fall weather until a couple days ago when things took a turn for the worse and the rain set in. And when I say rain I don't mean light showers. I mean monsoons that result in massive puddles and darkness all day. Don't get me wrong, we desperately needed the rain because of all the forest fires we'd had lately. The air is much cleaner now that it's rained and I'm breathing easier because of it. Pesky sinus problems had been plaguing me pretty badly in September. I despise sinus headaches. (Any readers out there have any natural remedies for sinusitis? Not a big fan of antibiotics...)

But other than sinus issues that things have been looking up health-wise. Physical therapy is going well and I am blessed to be working with therapists who are familiar with both TMJD and EDS. Don't get me wrong, I still have aches and pains, but I haven't been dependent on round-the-clock tylenol as I had previously been. I have also discontinued taking 1/2 a flexeril at bedtime because it was giving me tachycardia all day long as a side effect or reaction. Most prescription drugs seem to disagree with my constitution. I had also grown tired of the daily tylenol for months on end. Especially after Dr. Oz mentioned how over-the-counter analgesics like tylenol and ibuprofen can lead to hearing loss after longterm use. Considering that my grandpa has better hearing than I do, it's probably not a bad idea to cut way back on the Tylenol consumption. My ears ring a bit and my grandparents both insist that I'm hard of hearing. Perhaps it's just because I prefer not to have to strain to hear the television. Or maybe being front row at all those concerts as a teen wasn't such a good idea after all. Or maybe it really is the years of chronic Tylenol use. But I have noticed the need to turn up the volume on my iPod lately.

I attribute my pain relief and improved POTS symptoms to two things. The first is that I have begun taking a multivitamin, extra C, and cod liver oil which has helped A TON with joint pain. I have also begun researching amino acid therapy after being inspired by what I read on lessflexible.com. A woman with EDS began an injectible amino-acid regime (monitored by a physician of course) and explained how it helped her become less flexible in regards to her hypermobility form of EDS (the same type I am afflicted with). I need to do a bit more research before delving into the complicated world of supplements but her personal experience sounds promising and may very well hold some validity.

The second is that the barometric pressure has been high and stable (with the exception of the barometer falling the past few days). I definitely tend to have more controlled symptoms when it is sunny but not hot and coincidentally when the barometric pressure is high and consistent. Like wearing a giant compression stocking. Thus a controlled, comfortable environment is very helpful for controlling POTS symptoms.

The fall has been filled with appointments. Trying to get well has become a full-time job. I am trying to fit in a bunch of random appointments before the new year since my deductible has finally been met. This means I will be continuing with physical therapy, a few more acupuncture sessions, adding massage and hopefully some counseling too. My EP also wants me to go to the autonomic testing lab at the university for autonomic testing and see one of their EDS specialists as soon as possible. I still have not proceeded with the upright MRI of my brain and spine as I am scared of what the results could show. I am also seeing a sleep specialist and an ENT before the end of the year. Too. Many. Appointments. But it beats having to pay for them next year so I am trying to be diligent and put in the time and effort to hopefully improve more of my symptoms. Fingers crossed for some decent doctors who aren't jerks and don't waste my time. On that note, I am digging the lyrics to Sara Bareilles' song, 'King of Anything.' Remind you of interactions with clueless know-it-all doctors much?

Fall FaceCaddy Giveaway Winner!

And the lucky winner of a zebra-print FaceCaddy is...Kathleen W!

A big thanks to John over at CaddyWraps for sponsoring this giveaway!

POTS and Dysautonomia Awareness 2012

These lovely infographics are courtesy of Art Director Rachael Rodriguez of Rsquared Creative.

October is Global Dysautonomia International Awareness Month!

Dysautonomia International has declared October to be Global Dysautonomia Awareness Month! 

Fall FaceCaddy Giveaway!!

Hello dear readers! While I am happy to report that I no longer need to wear my FaceCaddy every single day to control my TMJD pain, I am soooooo thankful to have one to use on the days when I do need it. It always does the trick. The efficient manner of heating and icing my jaw has helped relax the muscles immensely and I am doing much better lately in regards to my TMJ.

I am pleased to be able to offer another FaceCaddy giveaway on the blog to celebrate my favorite season. While I used to rely on ice, with the weather getting chillier heat feels nice. This is one of my favorite products and has improved my quality of life immensely.

If you would like to try a FaceCaddy, please leave me a comment below and tell me how a FaceCaddy would help you feel better this fall. Be sure to include your email address in the comment. I will announce the lucky winner drawn randomly from a pumpkin on October 15, 2012. Good luck! In the meantime, check out the entire FaceCaddy line at CaddyWraps.com.

Blogger's New Look: Not Cool

Ok so this post will be a rant. Is anyone else disgusted with change for the sake of change? (Think: GMail's new look, Facebook's Timeline, etc). Not to mention forced change. I sure am. And now blogger. I hate adapting to change on other's terms or schedule. 

It's not just that I always hate change when it comes to technology, but sometimes it's next to impossible to snap my fingers and adapt. I never used to be this way, but since getting sick I despise change that necessitates any extra cognitive function on my part.

Please dear Blogger fairies, I beg you, change things back to normal. Change them back so that they look the way they used to when I sign in. If it ain't broke, don't fix it!

Perfect Turnout Comes With A Price

As any ballet dancer knows, perfect turnout is considered paramount to being successful in the ballet world. Here is an example of picture perfect turnout:

Now, for many of us with EDS, this position comes naturally. It always did for me. As a child my ballet teacher was often impressed by my innate "perfect turnout" and would use me as an example to demonstrate for the rest of the class. A few of my peers were able to easily emulate this ideal turnout, and others could barely get their feet to point anywhere but straight forward. They were probably the "normal" ones in the bunch. Little did my teacher know that I was simply a genetic freak anomaly who didn't have to work to acquire this turnout at all. I loved ballet. It came pretty naturally and I was able to use my body as a vessel for self-expression. Had I have known that I may have been doing more harm than good to my body though, perhaps I wouldn't have let my teacher work me so hard. Perhaps I wouldn't have danced ballet at all actually.



Everytime I watch Dance Moms and see Brooke Hyland engage in her picturesque contortions I can't help but wonder if she has EDS and want to warn her to slow down now because her body will thank her for it later. I worry that any child who exhibits extreme hypermobility may be at risk for extreme pain, suffering and even surgeries later in life. Especially if the hypermobility is encouraged by demanding teachers (like Abby Lee Miller!) or even parents who don't realize the potential consequences of overstretching their children.



Perhaps someday the medical population will realize that EDS is much more common than the literature recognizes and start testing for hypermobility routinely at physicals. They should definitely start screening for it at ballet schools, gymnastics gyms, etc. If nothing else, early screening may enable parents to help their kids protect their joints through good practices and bracing at an earlier age, thereby prolonging the life of a problematic joint.

Instead it is often considered cool to share these party tricks with others. In fact, our culture values hypermobility on display. Everytime I watched street performer and self-described extreme contortionist hiphop dancer "Turf" do his thing on America's Got Talent I couldn't help but root for him. Not only was he a likable guy, it also seems likely that he will endure some medical problems down the road as a result of his dancing now.


Disclaimer: It probably goes without saying, but just in case you're new to this blog I should mention that I am not a licensed physician and therefore not qualified to make medical diagnoses for any of the aforementioned individuals based on what I have seen them do on TV. They may or may not have ehlers-danlos syndrome.

Feels like Fall

The last few days have been perfect weather. By perfect I mean sunny and crisp with a slight breeze and not hot. Fall has always been my favorite season. Call me a nerd, but I always looked forward to back-to-school time. I can't believe August escaped me and I didn't manage to post a single blog entry. There has been a lot going on in my life not only health-wise, but dental-wise. If you know anything about me you know that dental work scares me more than anything in the world. More than spiders, more than puppets. Even more than the ER visits. Crazy I know. That's how much I hate dental work. But dental work, or more specifically oral surgery, is how this whole mess started. To make matters worse, my old oral surgeon, his wife and two kids are now featured in a tv commercial for a local wildlife park that plays multiple times per day. A painful reminder of the surgeon who singlehandedly ruined my life. Sadly, his oral surgery practice is still in business, but perhaps he's realizing he'd better find a backup plan and has taken up acting.

Back to the dental work: turns out I need a root canal, possibly two. Oh the joys of having TMJ. I can't blame it all on TMJ, I probably eat way too much candy and also have bad genetics to blame. Every relative I know has multiple crowns, fillings and root canals. There's probably no escaping it. Root canals cost about 2 grand per tooth and that doesn't include the crown (only about a grand) that they have to put on after the root canal. So only 3 grand per tooth...no big deal. I am trying to put it off as long as possible not only because of the cost but also because my TMJD has improved a bit lately thanks to a physical therapist who is familiar with both TMJ AND EDS. He has been doing ultrasound treatments on my jaw joints as well as some postural exercises and hands-on work. I would hate to screw up all my progress with a goddamn root canal where my jaw will be propped open for hours on end.

Another new issue and what I'm assuming is an EDS-related issue is hip and lower back pain. I have two hips that pop in and out all day long and have for quite some time now. However, I have ignored all the popping for many months until the pain became unbearable a few weeks back and I began having to hobble around like a geriatric patient to get from point A to point B. The pain radiates to the insides of my knees and makes my thighs weak and shaky, much like the jello-legs I described in an earlier post. The whole experience has been very unsettling and my physical therapist wants to evaluate all this tomorrow and determine whether the problem is originating in my hip joints themselves or radiating from something wrong with the lower back. I am not sure which would be worse. I just hope it's fixable. I am tired of living on extra-strength tylenol that merely takes the edge off enough to sleep for a few hours at a time before being reawakened by pain.

In terms of POTS, my resting heart rate and blood pressure has been running shockingly normal lately! By normal I mean my hr has been resting in the high 50's to mid 60's and when I stand it rises to the 80's or 90's. Still not normal, but heck, not half bad either. My blood pressure varies anywhere from 90's over 60's at night before bed all the way up to 130 over 85 in the daytime when I'm up and about. I am thrilled with these numbers and proud of my body for finally starting to behave again (did I mention I am actually sweating a bit again?! And thrilled about it?) Which is why I was so bummed at urgent care today when the doctor informed me I was having  PAC's or PVC's (extra or skipped heartbeats that feel like palpitations) that he could feel with his stethoscope. I am confused. My vitals all looked so pleasantly normal, yet my heart is now trying to thud it's way out of my chest. He instructed me to see my cardiologist tomorrow for further testing. I am hoping it's some sort of a simple, straightforward fix for a change.

I have a few exciting back-to-school giveaways coming up on the blog and plan on being back here in full force for fall. I have missed writing/venting and think I really need to continue writing simply to maintain my own sanity if nothing else. Hopefully I can help a few readers in the process too. :)

Should People With Chronic Illness Become Pet Owners?

A big thanks to guest blogger Sandra Scott of Simple Living for weighing in on an important topic I have been pondering for quite sometime myself. Although I don't have a dog or cat yet, it is definitely something I'd like to do within the year.

So you want to become a pet owner. The rewards almost always outweigh the amount of work and the risk that your new furry companion may ruin your favorite shoes, rug, or sofa. However, there are a few important factors to consider before committing your time, energy, and income to a new pet.

For starters, consider your personal energy level. If you suffer from a chronic illness, you may also experience pain or debilitating fatigue at times. Would you be able to walk a rambunctious dog everyday? Or would a calm and cuddly feline companion be more suited to your unique needs? Also consider the potentially negative effects of pet dander and fur on your health. As long as you are able to keep your house and pets clean, pet dander probably won’t pose a significant threat to your health (unless you are asthma and allergy prone). If you do happen to be dander-sensitive, consider a cute turtle or even a beautiful array of tropical fish.

Every pet is different, and some require more maintenance and attention than others, but every pet is worth it in their own special way. If you find it difficult to meet your dog’s grooming needs, there are plenty of places to take them in for doggy beauty treatments fairly affordably. That said, it is still important to factor your pet’s potential grooming and veterinary needs into the monthly budget along with their food to determine whether or not you can really afford an animal.

Although experts can’t seem to agree on exactly why this phenomenon occurs, it has been proven that pet owners enjoy better overall health and longevity than their petless peers. I would like to think it has something to do with the power of unconditional love and companionship. Even when your health fails, your pet will remain a loyal companion by your side no matter what. They expect love and attention in return, but as long as you are able to adequately meet the basic needs of your pet (food, water, clean shelter, and some exercise) then getting a creature companion may be a feasible and wonderful option, and may even serve to improve your overall health. Or at the very least, improve your mood. Who wouldn’t love to see a wagging tail and happy grin every time they’re feeling blue and under the weather? As far as I’m concerned, there’s no better way to brighten a day.

From Worrier to Warrior

Worrier: A person who torments oneself with or suffers from disturbing thoughts, cares, anxieties; one who frets.

Warrior: A person who shows or has shown great vigor, courage or aggressiveness; soldier.

Seems it has been awhile since I posted a general health update on all the random happenings of my crazy body. And a lot has been happening. The year was off to a crappy start with an emergency appendectomy that seemed to set the tone for the rest of the health craziness that would ensue. I was just relieved I awoke from surgery and that it had been a completely routine procedure free from any major complications. I had some MAJOR tummy troubles before (probably just my appendix going bad) and after the appendectomy but I saw a GI doc who gave me some medication to take briefly that seemed to do the trick and I am now on a once-daily acid-reflux medicine called Dexilant. It is a great drug. Not quite strong enough to knock out all of the acid when I eat junk foods, but on the days I forget to take it I notice what a big difference it is making. And unlike Prilosec which I had a hard time remembering to take twice daily, I only have to take Dexilant once daily (and believe me, that's hard enough to remember!) The caveat? It is an EXPENSIVE drug. Luckily I am now enrolled in a prescription discount program sponsored by the manufacturer so I get a 30-day supply for $20 instead of over $200. I hate the fact that I am now on a daily prescription as I try not to take anything since my body is hyper-sensitive to meds. Luckily I haven't experienced any noticeable side effects from the Dexilant so I will continue my daily regime in addition to improving my dairy-free diet which I am hoping to gradually make more alkaline in the near future.

For several weeks after the appendix surgery I was worried I might be experiencing gastroparesis symptoms as so many other potsies do, but my ravenous appetite has now returned and so I am convinced it was just acid reflux coupled with a little post-surgical constipation. Although I did not take any narcotic pain medicine after surgery, apparently constipation is almost a given side effect of any abdominal surgery even among the general population. I even received my first (and hopefully last ever) enema in the ER this year a few weeks post surgery. Talk about uncomfortable. However it was also comforting to discover that I am not the only one who has had to resort to such extreme and unpleasant measures after abdominal surgery, for once I was dealing with a COMMON problem. Which was refreshing for a change. And my scars are tiny and healed very quickly. They are barely noticeable anymore.

Speaking of skin, next month I have to see the dermatologist to get a "suspicious" looking toe mole biopsied. I knew all those years of daily flip-flop wearing would eventually catch up with my feet. No one ever puts sunscreen on their toes. It is an overlooked area of the body. I also have a few other spots they will probably want to biopsy since I have a family history of skin cancer. I doubt it is anything serious, but my insurance deductible finally having been met dictates that it's time to knock that appointment out of the way. Last Valentine's Day my mom had a basal-call carcinoma removed (successfully) from her face and that served as a big warning sign that it's time to pay more attention to my skin. My grandpa is also currently undergoing various skin cancer treatments including a new laser-light treatment to remove pre-cancerous growths all over his head. I am really hoping that this new treatment will clear it up for him because it's a painless, non-invasive approach and he has undergone painful removal procedures several times already.

Truth be told, random but important appointments like the dermatologist visit have taken low priority these past few months as I've been struggling with the worst pain of my life from intense TMJD headaches. I seem to be stuck in the bargaining stage of grief where I can't help but wish it were any other joint affected but my TMJ. That is the one I need to use the most in order to speak, feed myself, function. It is so hard to get by in the world without talking. People take that ability for granted everyday. I know I did. This pain really plays head-games with me since it is worst after speaking or eating (basically the two things I live for). It feels like my body is punishing me anytime I try to be myself and reclaim my lost identity by making a phone call or eating a burger (with a knife and a fork, swallowing the bites whole). My jaw goes out and the pain sets in. Punishment for doing the things I enjoy. Heck, just for doing the things that are necessary to sustain life. A food-loving girl can only survive off of smoothies and soy yogurt for so long. And I tend to lose all my marbles when I'm starving and not eating the kinds of foods that my body demands. Throw in days upon weeks upon months of pain-induced sleep deprivation and it's a recipe for disaster and dysfunction. Just getting through each day has proved to be quite a challenge the past few months and the pain has reached a point where the intense menstrual cramps I am accustomed to getting every month pale in comparison (although they have not changed in intensity at all). In fact, if anything my periods have been getting progressively more painful over time too (will deal with that one later as a trip to the gynecologist is not high on my priority list at the moment either). It's just that I know from past experience that my period represents a temporary state of pain, which makes enduring it much more bearable. There is an end in sight. TMJD pain has been discouraging because I seem to get the pain episodically but unfortunately these flare-up episodes last for months on end with no apparent rhyme or reason and I never know when the pain will finally cease. If the smell of BenGay didn't redden and burn my eyes so badly I would be rubbing it all over my face, head and neck on a daily basis.

Needless to say I have been "doctoring" for my TMJ issues again out of sheer desperation and have finally stumbled upon a few knowledgeable practitioners who didn't dismiss my pain with a prescription for valium and a box of tissues (as my gem of a PCP did at the beginning of this flare-up). I am now seeing a physical medicine doctor who specializes in pain management. He has a solid understanding of the complexities of the musculoskeletal system and has seen a few other EDS patients as well.

I am also seeing a physical therapist who has worked with Dr. Tinkle in treating his EDS patients. My jaw must have dropped open in disbelief when he not only knew what EDS was but had successfully treated it before. I will be attending physical therapy sessions with him 2-3 times weekly and receive an ultrasound treatment to each TMJ which so far has helped immensely considering I've only had two sessions. I'm optimistic that ultrasound therapy will provide some relief as my pain seems to be muscular in nature. I am also undergoing the needles in acupuncture again twice weekly for now but hoping to wean off to once weekly soon.

I gave massage another go last week with a knowledgeable practitioner who had actually had a cervical fusion surgery a few years back. I was also impressed with how well she knew the body but I am going to hold off on massage a bit longer as I think I'm doing too much right now and the sheer number of appointments every week alone is exhausting. Massage is supposed to be relaxing but I'm too stressed out by all these appointments to fully enjoy it. Once I wean off the acupuncture I would like to incorporate massage into my weekly regime. Thank god I had that appendectomy and my insurance is finally kicking in to cover these treatments (until the end of the year, that is!) I am dreading the day January 1st rolls around when I will have another deductible to meet before I can receive treatment of any kind.

Oh, also one more totally random finding worth mentioning that I probably haven't shared yet. This year so far I have had multiple x-rays (which revealed nothing except for constipation), two or three abdominal CT scans (found appendicitis), one head CT scan (they found a sinus infection on that one, told them I didn't need a CT to know that...) and an MRI of my TMJ's. I am supposed to get a full upright MRI of my head, neck and spine to check for an acquired chiari malformation and all related issues but I have decided to wait until after my birthday to do that because I'm not sure if I'm emotionally equipped to deal with another bad test result right now. Earlier this year my doctor decided to order an ultrasound of my neck to examine the lump in my throat I felt upon swallowing (which reminds me I have not yet scheduled the endoscopy I am supposed to get either. TOO MANY TESTS!) Anyway I did not expect them to find anything at all on the neck ultrasound. Figured it would just be another futile test, but to my chagrin they did find a small thyroid tumor. At 3 mm it is still too small to needle biopsy so it is just something I will have to have monitored yearly to make sure it doesn't grow any bigger. If it does then I will have to have a biopsy. But for now it is not dangerous and highly unlikely that it is any type of cancer. The endocrinologist I saw seemed pretty confident that thyroid tumors are an extremely common incidental finding and most of them are not harmful. Nonetheless it was and still is difficult for a worrier like me to forget that it is there...

Which brings me to my closing thoughts. The chronically ill are a very special population. We are not just worriers. We are also warriors. Can we be both simultaneously? Yes, although the two concepts would seem at odds to most people. We assume both roles everyday without even realizing it. Being a warrior is hard work. Not worrying about our health is even harder. I cannot imagine any of my "normal" friends or relatives enduring the endless medical tests and treatments we have. It takes persistence. Patience. Mental and physical fortitude. In between doctors' appointments, we often forget to live. Or at least I do. My goals have gone from hosting my own talkshow to simply making it to my next doctor's appointment on time. But does it really matter if I am on time? Or even in one piece when I arrive? Not so much in the grand scheme of things. I have accepted the fact that I am imperfect. All the labels and diagnoses mean very little to me anymore. I just want to be happy and pain-free, warts and all. And to transform my inner worrier into a proud warrior for good. Just like the musically-gifted Mr. Mraz has done...