Survival Mode

The past few months I've been stagnating in survival mode due to horrendous, persistent pressure headaches at the base of my head and upper neck. Throw in some charlie-horse muscle spasms on the sides and back of my skull and in my upper neck that are palpable to the touch and it's a recipe for intense pain, the kind that keeps me awake at night. When I finally do pass out from pain and exhaustion, the pain promptly awakens me again in a mere two to three hours. Subsisting on two to three hours of sleep per night is enough to render even the sanest of people completely mad. This lack of sleep, coupled with intense chronic pain really gets me down at times. I feel like a zombie most days and on my "good" days where the pain is bearable and I can attempt to distract myself from it, I get overzealous and overdo it because I never know how long the low-pain stretch will last and I feel the need to take advantage of those times whenever I can. However, on the low-pain days, all my body seems to want to do is catch up on sleep, but my mind is telling me I need to get out of the house and enjoy whatever I can before the headache becomes hellish again. The worst part of all this is, my doctors still can't seem to tell me with any certainty whether this head pain is a result of my 5mm chiari malformation or more due to my atlantoaxial instability (right lateral subluxation of C1 on C2). Or it could possibly be occipitoatlantoaxial instability (meaning my ligaments are so lax due to EDS that they're failing to hold my head on straight). But again, not even neurosurgeons can pinpoint with any certainty what exactly is causing the intense pain.

My best bet, no doubt, would probably be to travel to a place like The Chiari Institute of New York where they fix the instability and decompress the chiari in the same 6-hour procedure, taking a team approach with two surgeons present in the operating room, one to fuse the upper vertebrae and one to decompress the chiari. That means (hopefully) only having to go under the knife once and ensuring that my bobblehead is stabilized. However, New York might as well be Mount Everest to me right now as travel has become just about impossible lately. Even car rides in my trusty Aspen Vista cervical collar have become almost unbearable. Any movement really triggers and worsens my neck and head pain, which would suggest instability is likely the pain-causing culprit. This is not to say that my chiari is not causing me any problems. My balance has become really bad this past year or so. I used to be so graceful, so poised back in the olden days when I danced ballet. Now I am so clumsy I am tripping over my own feet, dropping things left and right and I have to concentrate really hard on basic tasks like walking or carrying something. I know that is not normal, not for me, not for anyone. I used to enjoy going on walks even after getting sick with POTS, but lately I fear that I look like a drunk person trying too hard to keep my balance and I wonder if people think I'm a drunk when I'm out in public...

I know that it's definitely time to do something. I've been told by my physical therapists, neurosurgeons and primary care physicians that unfortunately physical therapy is never going to remedy the problem, no matter how diligent I am with my exercises. My ligaments are too lax thanks to stupid EDS hypermobility. And while physical therapy can help to strengthen the surrounding supportive muscles and hopefully preserve the rest of my neck function and help provide stability to my neck's lower vertebrae (I currently have four bulging discs in my c-spine and some mild arthritis between all my vertebrae), the upper vertebrae are probably going to require a cervical fusion procedure to correct the instability. The prospect of a risky neurosurgery makes me sick to my stomach.

In terms of major surgery I've only had an emergency appendectomy, and fortunately I didn't have too much time to ruminate on the issue or be scared as I wasn't really given a choice. I do remember asking the on-call surgeon if I could just go home, research the procedure for a bit and then return the next morning for the surgery. He informed me that I could do that, but then he'd see me again in a day or two at most with a ruptured appendix and have to perform an even more painful surgery with a much longer hospital stay. So I consented to have a laporoscopic appendectomy that same night, and honestly, it was the best decision I ever made! I was in the hospital recovering for one day and then they released me the next night. Luckily the nurses and anesthesiologist were all very careful with me because of my dysautonomia and EDS. I was well-hydrated and there were no complications. I took some extra strength Tylenol at home and didn't even need the narcotic pain meds they prescribed. It hurt, sure, but in a few days the worst of the pain had subsided and I was able to get on with my life and start eating and drinking normally again.

I have a feeling that neurosurgery is a whole different ballgame though. I don't like the thought of anyone cutting into my neck and head. I just don't. It's icky. Necessary, but icky, and frankly very scary. There's too much important stuff up there. I have thought long and hard about what will happen to me if I don't have surgery though and the possibilities are also scary. I can't get in any more car accidents or sustain any type of major injury as it could easily be game over for me. Internal decapitation does not sound like a good way to go. So although it will be scary and painful, I have decided I need to stop being so afraid and proceed with surgery at the soonest opportunity. I do not want to live perpetually in pain and a neck brace. It would be nice to not have to wear this thing indefinitely. And even nicer to be out of pain. I can barely remember what it feels like to be pain-free but I know it would be amazing and I could accomplish so much more with my time and get so much more out of life.

Most importantly, if I get my health back I can devote 110% of my energy and focus to helping others who are still in pain and suffering from chronic, painful and misunderstood conditions like dysautonomia, EDS and chiari: the trifecta or "The Sara Syndrome" as the brilliant Dr. Rekate has coined it. Also, if you haven't seen it already, last week The Today Show featured a news segment about a young boy suffering from the debilitating effects of chiari malformation, dysautonomia and EDS. Please watch his story and share with your friends and family. This kind of national, mainstream media coverage is a huge deal for patients like us.

Visit NBCNews.com for breaking news, world news, and news about the economy

The Sara Syndrome

This presentation by Dr. Rekate really resonated with me. It captures the typical experience of patients suffering from dysautonomia, joint hypermobility, chiari malformation and craniocervical instability and the associated sensitivities and autoimmune problems we struggle with.

So True!

A friend and fellow dysautonomia warrior posted this on her Facebook this morning and it really resonated with me! People in the chronic illness community are among the strongest and bravest on earth.

2014 In A Nutshell

On the eve of a very important appointment with a very important neurosurgeon, I find myself brimming with anxiety over the occasion. You'd think that after seven years of health drama, doctor's appointments wouldn't even phase me anymore. But the reality is, sometimes they still do. Especially the important ones. So I figured what better way to spend my evening than to engage in a little blogtherapy and update you on what's been happening in my life so far this year and also explain why I haven't updated this blog in ten months!

Let's start off with some happy news! In February I got engaged! The proposal was magical and perhaps I should save that story for a separate post! We were both so thrilled that we started wedding planning almost immediately but then we both took a step back and realized that planning a huge wedding was starting to get really overwhelming (and really expensive!) really quickly. The more I thought about it the more I realized that a wedding is merely one day and that the marriage itself is what really matters. So we went from wanting a huge outdoor wedding and reception to now wanting a very small, private, low-stress ceremony and will probably skip having a formal reception altogether. It just doesn't make sense to exhaust all of our physical and financial resources on one single day when the time, money and energy expended could be better invested in creating our home together. I've basically stopped wedding planning for now and I'm so much more at ease. We've agreed upon the perfect small venue and I am going to wear a gorgeous gown. I also want a cool, Cake-Boss style cake. But other than that our wedding will be no-frills, no fuss.

In April we started fixing up my fiance's house to put on the market. Boy was that a job! It really tested our patience as things just kept going wrong and the house proved to be a lot more work than any of us expected! Several weekend work parties, one dead cat (long story!) and countless hours of manual labor later, the house is finally listed on the real estate market and being shown! Cross your fingers for us that it sells soon so we can move forward with the next chapter of our lives.

In June I finally had an upright MRI of my brain and cervical spine as ordered by my primary care doctor for the wonky discs in my neck that kept going out. The MRI results confirmed my biggest fears: that I do indeed have a Type 1 Chiari malformation as well as cervical instability secondary to Ehlers-Danlos syndrome. I always knew Chiari was a distinct possibility because of my EDS, but I figured since my POTS has gotten so much better over time that I surely I didn't have any more comorbid conditions to worry about. Well, I was wrong. My Chiari measures a mere 5mm but I am symptomatic with headaches, balance issues and tingling extremities and have been for over a year now. So far I have seen a local neurosurgeon, had a Skype consult with Dr. Rekate of The Chiari Institute (who was wonderful and a wealth of information!) and have one more consult with the head of neurosurgery at the local University tomorrow. Dr. Rekate told me he trusts this surgeon's skill so I feel a bit better in knowing that he's highly regarded by his peers. However my cervical instability is perhaps more of an issue than the Chiari itself so I need to make sure my local doctors take it seriously and address it accordingly.

In July and August, I ended up getting sent for several additional tests: an MRI of my thoracic spine, an MRI of my lumbar spine, cervical x-rays in flexion and extension, a 3D CT scan of my cervical spine, and a cine MRI of my brain/c-spine. Am I ever sick and tired of MRI's! The good news is that my MRI's showed NO evidence of a syrinx or a tethered cord. Tomorrow I will receive the results of the cine MRI from the neurosurgeon and boy am I nervous. The cine MRI is a specialized MRI that assesses the cerebral spinal fluid flow or extent of the obstruction from the Chiari. I am hoping he tells me I don't need surgery, or at least not urgently. The prospect of brain/spine surgery scares the bejeezus out of me. And I would really like to focus on things like getting married and finding our new home. A surgery would certainly disrupt my plans. But will have to see what he says tomorrow and take everything one step at a time.

Can't believe it's already October which also happens to be dysautonomia awareness month! This month I look forward to getting 3 teeth crowned (ugh!) and watching copious amounts of Gilmore Girls on Netflix. It's also my mom's 60th birthday which is kind of a big deal. Not quite sure how to commemorate the occasion but she has been a huge support to me my whole life and especially these past few months as I have suffered some pretty rough days health-wise and dealt with yet another life-altering diagnosis. Wish I could buy her a really cool, expensive gift! Or send her on a vacation somewhere tropical and relaxing!

As for November and December, we are hoping my fiance's house will finally sell so we won't have to maintain it over the winter and I am really really hoping to avoid neurosurgery. I should know more about that tomorrow. Until then, thanks for reading! I have really missed blogging and missed hearing from my lovely readers as well! Hope you are all doing well and enjoying improved health and wellness!

It's EDS Awareness Month!

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

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

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

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!

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.

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

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?

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. :)

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...

Adrienne McGuire's EDS Story

I am thrilled to welcome an amazing guest poster to Defying Gravity, Adrienne McGuire. Check out Adrienne's other compelling reads at Daily Path.

I’m 37 years old and was diagnosed with Ehlers-Danlos Syndrome Type III just last year. I have two children who are both very active and require a lot of physical and emotional attention, which can be a real challenge when you’re suffering, which I have been for most of their lives. I saw many different doctors over the years, all of whom proclaimed that they could find no reason for my pain. Some chalked it up to anxiety; others called it fibromyalgia. But I knew there was something else going on.

Hindsight is 20/20; isn’t that what they always say? Looking back now, I can see that my EDS and POTS problems started when I was young with several fainting spells and a distinct inability to withstand any amount of heat without passing out or nearly passing out. I had horrible shoulder and back pain as young as 13 and have ever since. My neck has been in and out of spasm since age 20. At age 22 my entire body began to twitch, which I now know was from overuse. By 25, my legs were constantly aching so badly I was in tears daily. And that was eleven years before my diagnosis.

Last year I had to say goodbye to the old me and say hello to the new me with limitations when a rheumatologist told me I have the hypermobile form of EDS along with a case of POTS that fluctuates with hormones, as do my other EDS symptoms. As I educated myself about the disorder, I realized that the only way to control the symptoms was to slow down. I had to explain to my children that I can’t do all of the physically active things that we used to do, and that was really tough. I mourned my lost abilities to run, hike, carry my kids, and play on playgrounds. I had a mental break and ended up in the emergency room several times. That was 9 months ago. Today, I am moving forward.

Though I lost some abilities, I gained so much in the way of mental strength and focus. I could no longer work as a legal assistant but I became insanely determined to create a life for myself that worked. By pacing, therapy (both physical and mental), trial and error to find effective medications and supplements, meditation, and learning how to ask for help, I have managed to look at my life with a positive spin. I now wear silver ring splints all the time and other supports as needed for wrists, knees, elbows and neck. I take medications that control my POTS symptoms which means I can get out more, albeit in short bursts. I recently talked to my doctor about getting a wheelchair for long outings. But, overall, when I look at my life now, with a disability, I am so much happier and grounded than I ever was before.

Adrienne McGuire is a writer, website consultant and wellness enthusiast who abandoned the corporate ladder to create a life that worked for her.  Her journey down the road less traveled took her to www.dailypath.com, where she is now an integral part of the writing team.

Top 10 Dumbest Things Doctors Have Said About POTS/EDS Diagnosis

Earlier today it occurred to me I have encountered some really, ridiculously dumb doctors these past few years. I seriously wonder how some of them ever made it through medical school. I figured I should compile a top ten list while I'm thinking about it so I don't forget some of these gems. Good for a little comedic relief. I actually laughed out loud in their offices at a few of these.

10) "Is it too late to join Cirque Du Soleil?"--Sleep Medicine Doctor upon hearing about my EDS diagnosis

9) "Just stand up slowly and don't do squats or you might pass out."--Primary Care Provider's advice on how to manage POTS

8) "You're so flexible you shouldn't be in any pain. Only stiff old people like me have pain."--Primary Care Provider's response to dislocated jaw

7) "Here's some tissues and a prescription for valium. Have you ever seen 'Valley of the Dolls?' That was a good one."--Primary Care Provider's treatment for dislocated jaw

6) "I'm going to get you something hard to bite down on for whenever you're in pain."--Primary Care Provider's prescription for TMJ pain

5) "Surgery never holds on people like you."--Orthopedic Surgeon examining my joints

4) "Oh wow--your elbows! That's pretty wild!"--Physical Therapist upon joint evaluation

3) "That is the only joint in the body we never learned about in med school."--Orthopedist in regards to the TMJ

2) "Trust me, I'm just as scared as you are!"--Anesthesiologist 5 minutes before my appendectomy

1) "Go home and take it easy. Try to get some rest."--Just about every doctor I've ever seen. Don't they think I've tried that already?

Beat the Summer Heat with a FaceCaddy!

As a chronic TMJD sufferer with EDS I have been enjoying my FaceCaddy for several months now. The last few days have brought warmer weather and I once again realized just how great this product really is, not just for pain relief but for temperature regulation as well. Regardless of whether you have headaches or jaw pain, the FaceCaddy renders ice packs easily wearable, which is perfect for potsies in hot weather! I suffer from extreme heat intolerance, as do many other dysautonomia patients. The relief this product provides is tremendous. Due to the FaceCaddy's insulation, the ice packs stay cool for a long time without having to swap them or refreeze them.

I love this product, and am going to give away another zebra FaceCaddy to one lucky reader to celebrate the summer solstice!

To enter the Summer FaceCaddy Giveaway, please leave a comment below and let me know why you'd like to win! Also be sure to list your name and email address.

Entry deadline is July 10th. I will draw a name from my big floppy beach hat and post the name of the winner here on Defying Gravity, so be sure to check back after July 10th. Winner will be selected at random.

*You will automatically receive one bonus entry if you entered my first FaceCaddy Giveaway in honor of EDS Awareness Month.

*Anyone can receive an additional entry by sharing this giveaway post on Facebook.

Thanks for reading and good luck! :)

If you can't wait until July 10th and want to order a FaceCaddy now, purchase any CaddyWraps product online at CaddyWraps.com and enter "Take5" in the coupon code for $5 off your order!