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.

2013 Year In Review

This year brought a lot of major life changes and new beginnings for me. Mostly positive ones. I moved to a new home in a different location and am now (finally!) comfortably settled in here. I am living within walking distance to a major doctor's office, lab and my physical therapy clinic. I'm also extremely close to groceries, gas and restaurants. The convenience of not having to drive everywhere has simplified my life a great deal. The appointment running has calmed down a bit too with the exception of physical therapy and dentistry that is. The dental work I've had done and am still having done has tried ever fiber of my being this past year. I only have seven more fillings and five more crowns to go before I am completely cavity-free. I have had a grand total of three root canals, one crown and three fillings done this year. The physical, emotional and financial stress of dental work is enough to drive anyone clinically insane. I realize I have to keep plugging away at fixing my teeth to avoid future root canals and extractions, as those are not an option for me.

My physical therapy appointments though tough, are also rewarding. I don't look at physical therapy as just another appointment, I view it as an integral part of my weekly routine. I am already seeing results in the strength department. Luckily I build muscle pretty quickly which is helping to stabilize my ankle along with the rest of my wobbly body. I am lucky to live right next door to such a great physical therapy clinic with a therapist who also happens to suffer from hypermobility and TMJD herself. Doing physical therapy as a teen saved her from having TMJ surgery and that experience was what led her to the field. I feel optimistic about the progress that I am making and feel myself getting a lot stronger each and everyday. I only go twice a week but have an intense home exercise program that I do daily, sometimes in my living room and sometimes at my apartment complex's on-site gym, which is another nice feature of the new place.

The first month after I moved was fraught with major challenges concerning air quality. I had selected and moved into a ground floor unit, but unfortunately the complex was built on a wetland and as soon as the rains started in my apartment reeked of a strong, sickening mold smell. So much for life in a "luxury" apartment. A home humidity monitor I purchased revealed that the internal humidity reached 75% everyday. A normal internal humidity level is between 30-50%. Anything above 60% provides ideal conditions for mold growth. I fought with the complex to let me move to another unit. An option which was totally feasible considering it was brand new construction and only a quarter of the units were occupied. Their corporate management initially denied my request calling the mold smell a "subjective" complaint since they couldn't pinpoint the exact source of the mold. Upon conducting a bit of careful research and calling the city building inspector it turns out that the problem was much larger than bleach or exhaust fans could have ever fixed. In order to remedy the problem, the building would have had to have been torn down completely. Because apartments are technically classified as commercial space (even though residents inhabit them as their homes,) the city allows them to build on concrete slabs without crawl spaces. They didn't allow the concrete slab to cure long enough in the construction process which resulted in a subsequent sponge-like effect on the foundation every time it rained. Every time it rained that damp moldy smell crept up into my home from the concrete floor, through my carpet and into the living space.

I finally moved into a new apartment in the same complex at the beginning of October after enduring a month of hell in a moldy apartment. I am now living on the second floor of an apartment that doesn't smell of anything other than whatever I have been cooking in the kitchen. My sinuses are much better now and I can actually breathe out of my nose in the mornings again. Something I had wondered if I would ever be able to do again. Although sinus surgery may become an inevitability down the road due to a deviated septum and bone spurring, for now I have dodged a major bullet by avoiding surgery. And I am happy to put it off for as long as possible unless it becomes a necessity. My new apartment feels much healthier and I can breathe easy here which is a huge relief.

I am doing decent in the health department at the moment (aside from a nagging, two-week old mystery upper right quadrant and back pain that landed me in the ER for bloodwork, an abdominal ultrasound and a HIDA scan to no avail and is currently being investigated by my primary care doc). My health is something I do not take for granted at all. For the most part my POTS is controlled and doing much better now that I've removed myself from the moldy environment of the other apartment. Earlier this year I had a scary bout with benign positional vertigo that finally subsided after taking a month round of Augmentin antibiotics for my sinuses. It was a scary time for me. Every time I layed on my right side or flat on my back I would get the spins. This continued for a few months with my doctor telling me it was "just some inner ear virus," and an ENT insisting it was benign positional vertigo spurred by spending too much time in a dental chair as I had a scary incident where some heavy duty dental drilling back in the chair spurred a major attack. Whatever it was, it is no longer happening to me now and I am so thankful. I had a follow-up with a new ENT the other day and luckily they were not able to trigger the vertigo in his office. Because of my history with rotational vertigo during dental work though, he wants me to undergo a more sophisticated test called a VNG early next year to measure eye movements during different positions and then conduct a repositioning procedure in the office to resposition any inner ear crystals that may have become dislodged.

In 2014, I still have plenty of work to do. I would like to make more strides in the health and fitness department with an emphasis on healthier eating. I definitely have some work to do in that department. I am fortunate to have a wonderful boyfriend who enjoys cooking for me, the problem is he enjoys cooking tasty comfort foods without worrying about things like nutritional content or calories. Oh well, I can't complain too much. I know how lucky I am to have someone who cares about me and takes good care of me. I am finally in a healthy relationship, one that I don't have to change myself for. Compared to my verbally abusive ex, this experience has been night and day and I am so thankful.

So to sum it all up, this year has brought some health ups and downs, but overall I'm in a good place health-wise. I'm in a good place location-wise after finally moving into a healthy apartment. And I'm in a great place relationship-wise with someone who loves and respects me. Next year I intend to get my body in peak physical condition and hopefully start to renew old hobbies one by one without destroying my body in the process. For now I will have to say no to ballet but may take up pilates and yoga again in the new year.

Liebster Award!

I am honored to have been nominated for a Liebster Award by one of my favorite new bloggers and fellow potsy Brittany at Fabulously Faint. Admittedly I don't know much about the award except for the following: 

The Liebster Award is used by bloggers who have 200 follows or less on bloglovin' to promote each other and to make more friends in the blogging community and attract more attention to their blog. Each nominee must first list 11 random facts about themselves and then answer the 11 questions proposed by the person who nominated them. Lastly choose 11 bloggers and ask them your own 11 questions.

I in turn nominated eleven of my favorite bloggers! They happen to all have dysautonomia and/or related conditions.

Brooke at Growing Older, Growing Up?

C.M. at Life Unknown

Erin at My Life as ErinJ0

Kingsley at Life As Grike

Michelle at Living with Bob

Lauren at POTS Grrl

Hannah at Hannah's Dysautonomic Life

Candice at Infectiously Optimistic

Michele at Dysautonomia Normal

Jessica at Falling Apart At The Seams: My Life with Ehlers-Danlos

Anomie at Anomie Fatale: The Agalma Femme


11 Random Facts About Me!

1) I have Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Temporomandibular Joint Disorder.

2) I am obsessed with 90's pop culture nostalgia: toys, junk foods, music, television etc.

3) I adore the color pink and always have. Because some things never change.

4) My all time favorite book is The Great Gatsby.

5) I have perfectionistic tendencies and am very OCD about germs and cleanliness, though I have never been officially diagnosed.

6) I hold three bachelor's degrees including a degree in English Literature.

7) I loathe technology and hate trying to keep up with all the latest and greatest gadgets. I resisted the whole touchscreen smartphone craze for a LONG time. 

8) I am a dog person. If there are 20 people in the room and there are any dogs in that room, the dogs will always come sit on my lap. This phenomenon has happened on many occasions. We get each other and speak the same language!

9) I used to produce magazine style shows and host talkshows for government television.

10) I have naturally curly hair that is extremely hard to tame. I prefer to wear it straight but everyone else prefers it curly.

11) I used to dance ballet, jazz and modern dance and still really miss it. Ballet was my favorite.


Here are my questions courtesy of Brittany at Fabulously Faint:

Question #1
If you could only eat one food for the rest of your life what would it be?

Fruit Tarts. Undoubtedly fruit tarts. Anyone who hasn't tried one of these fine delicacies absolutely needs to. I would happily eat them everyday for the rest of my life. Fruit, custard, chocolate. All in one pretty little package. What's not to love?

Question #2
What's the most exciting/adventurous thing you have ever done?
Although I'm about as far from an adrenaline junkie as you can get, I'd say the most exciting thing I've ever done was meeting my favorite band and having a drink with the lead guitarist a few months before I got sick. I could've died happy that night.

Question #3
Describe yourself in three words.
Creative, kind and funny.

Question #4
Who inspires you?
Chronic illness survivors! That includes a lot of strong people. And anyone who stands up for injustice especially in the face of adversity! It takes a lot of strength to do such a thing. There are too many people I admire to name just one!

Question #5
What is your favorite piece of clothing?
My pink peacoat. It personifies me!

Question #6
If you could switch lives with someone for a day who would it be?
Someone who is in perfect health and optimal physical condition. I would take advantage of being in a healthy body for a day, that's for sure!

Question #7
If you could choose any career what would it be?
An interior designer! It wouldn't even feel like work to me, I would likely enjoy every second of it!

Question #8
What is your guilty pleasure?
Reality TV. Shows like Keeping Up With The Kardashians and Dance Moms especially.

Question #9
What is your dream vacation?
Australia. I have always, always wanted to see the Sydney Opera house on New Year's Eve and to hold a koala bear!

Question #10
Who are your style icons?

Anna Nalick. I was at her concert recently and we happened to be wearing the exact same ankle booties! Her style is unpretentious yet pretty and feminine. Timeless, not trendy. She always utilizes vintage or eclectic finds skillfully. She is not flashy but classy and refined and doesn't feel the need to dress trashy.

Question #11
What is your biggest achievement?
Being Valedictorian and voted most likely to succeed in my high school yearbook. It was flattering that my peers had such a favorable opinion of me and nice to be valued for my intellect. Especially these days now that POTS-induced brainfog has seemingly clouded my once sharp intelligence. If nothing else, it's comforting to know I was once a brainiac!

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!

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.

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!!

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.

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...

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!

Acupuncture May Support Autonomic Function

I have decided to give acupuncture another try. I tried it nearly 5 years ago following my car accident before my POTS had been diagnosed. I was very, very sick at the time. My acupuncturist always commented on my fast pulse and how it would eventually settle after I had been laying on the table for awhile. At the time he determined I was suffering from adrenal fatigue, (which I probably was) in addition to the undiagnosed autonomic dysfunction.

It was the lowest point of my life, when I wasn't sleeping for days on end, consumed by the chronic TMJ headache and tachycardia. I could barely even describe my symptoms at the time, they were all consuming and I was truly afraid I was dying. Just to think back to that time makes me shudder. I've come a long way since then, but my jaw seems to be getting worse. As I mentioned before, I have these stubborn muscle knots behind each ear that also cause earaches. Nearly every doctor I've been to has diagnosed me with TMJD. What brought me back to the acupuncturist is the fact that he knows how to use needles. I'm hoping to try some dry needling of the muscle knots there to see if it will break the spasm cycle and for how long.

As far as acupuncture is concerned, I believe there is some real validity in the science behind the centuries-old practice. This is not to say I have totally given up on all realms of conventional medicine (at least not yet!) but that I think eastern medicine more effectively assesses the patient as a whole, interconnected being instead of simply another number to send home with a prescription. Western medicine tends to rely too heavily on chemical pharmaceuticals, dispensing a different pill for each separate symptom while never stopping to consider if symptoms are somehow related.

In a perfect world, everyone would have easy access to truly integrative medicine, where doctors of all disciplines unite to most effectively treat the patient and all their ailments. I have yet to find a place like that around here. Eastern and western medicine should work well together instead of against each other. Many conventional practitioners dismiss the effectiveness of acupuncture or consider it some sort of voodoo magic. Acupuncture, however, is not magic, but rather a slow healing process that has been scientifically proven to effectively treat many conditions. I believe there are many ailments that respond well to acupuncture and many that require the intervention of more westernized medicine (i.e. my appendicitis earlier this year). However I have to wonder why my appendix went bad in the first place. Would it have still gone bad if my body were healthier on the whole? Perhaps. Or perhaps not.

I had my first session today and so far so good. No significant noticeable progress yet but no worsening of symptoms either. As long as my insurance approves this, I intend to continue with acupuncture sessions this year to improve my overall health and hopefully combat these painful muscle spasms. I read something interesting the other day, a current theory on the mechanism of acupuncture worth sharing:

Autonomic Nervous System Theory: Acupuncture stimulates the release of norepinephrine, acetylcholine and several types of opioids, affecting changes in their turnover rate, normalizing the autonomic nervous system and reducing pain.

Therefore, acupuncture should only help improve my POTS symptoms too. I will continue to provide updates on my adventures in acupuncture. Stay tuned.

Zebra FaceCaddy Giveaway for EDS Awareness Month!

I am thrilled to introduce this product to my fellow zebras and readers everywhere! I don't endorse products on my blog unless I feel very strongly about them. The FaceCaddy is one of those life-changing products that I can confidently recommend without reservation. It's a safe, med-free, non-invasive and affordable remedy for many different ailments including TMJ pain, migraines, sinus headaches and even hot flashes! Every EDS patient should have one of these on standby in the medicine cabinet.

A FaceCaddy user myself, I can attest to the quality and effectiveness of this product. The technology behind the FaceCaddy is simple and time-tested: ice and heat therapy are safe and effective treatment approaches that have been widely used by physical therapists, chiropractors and Md's for years. What makes the FaceCaddy so revolutionary is the fact that it renders hot/cold therapy completely portable and convenient: you no longer have to lay on your side while awkwardly holding a bag of frozen peas against your face for twenty minutes at a time. Instead you simply strap on the lightweight, wearable FaceCaddy and go on about your business while still reaping the benefits of hot/cold therapy which include pain relief, reduced inflammation and muscle relaxation.

As most of you know by now, I have been suffering from TMJD for nearly five years and have tried several different treatment approaches (most are costly, painful and largely ineffective) only to find myself right back to where I'd started from: with ice and heat therapy. Admittedly, when I'm in bad pain, I find it hard to muster up any patience. One of the reasons hot/cold therapy never worked well for me in the past was because I never had the patience to hold the ice or heat up to my head for long enough to relieve pain, reduce swelling or relax muscles.

Now that I wear the FaceCaddy, my impatience no longer poses a threat to the effectiveness of ice/heat therapy. If I'm having a really bad TMJ flare-up I often sleep with the FaceCaddy on. It's comfortable, soft and insulates the hot/cold packs so that they stay cold or warm for a long period of time without having to constantly re-freeze or re-heat them. A major bonus so you can truly relax while wearing it.

In honor of Ehlers-Danlos Syndrome Awareness Month I will be giving away a brand new FaceCaddy in zebra print with neon pink trim courtesy of FaceCaddy creator himself, John Lucas, who generously donated this product to share with my readers and commemorate EDS Awareness Month.

To enter the Zebra FaceCaddy Giveaway, simply:

1) Become a follower of my blog.

2) Post a comment below this post and tell me why you'd like to try a FaceCaddy.

*If you're already a following my blog then please post a comment on this post and any other post of your choice by May 19th, 2012.

To get one more entry in the giveaway contest (your name will go into the hat twice!) please share this post on Facebook.

The deadline to enter this giveaway is Saturday, May 19, 2012.

Good luck! The winner will be drawn from a hat and be announced here on Defying Gravity after May 19th.

In the meantime, the FaceCaddy is available online in four lovely fabrics: zebra, pink, black and paisley. Retailing at $24.99, this is one small investment in your health I promise you won't regret.

FaceCaddy is made by Caddywraps. They also make the BackCaddy which utlizes the same portable hot/cold technology and provides gentle compression (would have worked great after my appendectomy and will no doubt be my next CaddyWraps purchase!) and the EyesCaddy which works wonderfully for migraines and light sensitivity. To purchase any of the CaddyWraps products, visit CaddyWraps.com.

Milkshakes and Muscle Relaxants

That about sums up my day...not as fun and 'relaxing' as one might assume by the title. Although some new health problems have cropped up this year, I felt like I finally had a handle on my intense TMJ headaches. In fact, I thought I was out of the woods in that department. No such luck. I haven't had a doozy of a headache like this since last year!

Not sure why I have one right now...except for the fact that I am almost positive that some higher power is playing a sick cosmic joke on me...it sure seems like I'm being punished for doing the things I love most: eating and talking. Which I have to refrain from entirely when I get a TMJ headache like this. And forget trying to have a social life or be successful at any sort of job. As if POTS weren't enough to deal with on it's own...thanks Universe for being such a sadistic jerk. One major, debilitating health problem is more than enough to deal with and already more than I can handle.



There's no real rhyme or reason to what brought this headache on (no excessive talking or chewing lately) but it started around the same time last year and lasted for MONTHS. Last year I saw a neurologist who suggested a misdiagnosis of 'new daily persistent headache syndrome' without so much as feeling the giant muscle knots that feel like marble-sized cysts sitting right beneath my scalp. My mom can feel them, my friend can feel them, I can feel them. All with our bare, untrained hands. It's creepy. Nobody else has muscle knots like that behind their ears and on the sides of their heads. These knots are movable, get bigger and smaller, and are somewhat relieved by massage. Feels like awful menstrual cramps in my head. When someone presses directly on a knot I get goosebumps on my arms from the intensity of the pain. And that's saying a lot considering I have a high pain tolerance (I didn't even take any pain meds after returning home from my appendectomy).

The amount of vigorous massage it would take to break these suckers up is unbelievable. And frankly the flexeril has done nothing but relax all my other muscles and not touch the ones on the sides of my head. My primary care provider informed me that there is really "no good muscle relaxant for those small muscle groups." Fan-freaking-tastic. The only thing I have yet to try to remedy these awful muscle cramps is botox.

However once I had gotten my headaches under control I didn't think I would have to deal with this intense pain ever again. I should have known better. I am afraid that if I go in and get botox in these muscles now that it may freeze them in their knotted position and leave me in pain for the three months that the botox lasts. No doctor seems to know much at all about botox for TMJ and they sure as heck do not know how botox works in an EDS patient.

To say I'm annoyed right now would be an extreme understatement. Narcotic painkillers don't even touch this and the muscle relaxants don't do much either. Wish I knew someone who was confident enough to try to put my jaw back into place or break up the muscle knots somehow. Desperation is setting in. I am scared that it is going to be a repeat of last year with a months-long headache. The majority of my spring and summer last year was spent in excruciating pain thanks to these stupid muscle knots. Is this common in EDS? Why do I only get them around my jaw? And most importantly, how do I get rid of them? Any suggestions?

Bah Humbug!

The title of this blog post says it all. This year the holidays have been a bit lackluster for me to say the least. Today I definitely reached my boiling point. I have been too busy getting taken advantage of by my employer lately to enjoy much of anything. The reason I work a part time work-from-home job is because that's all I can do health-wise without being able to drive or work a regular predictable schedule. Unfortunately most employers equate working from home with being at their beck and call all hours of the day and night. I have spent a full 30 hours on my contract position this week (I only get paid for 15 hours) making calls because apparently all I am is a glorified telemarketer (+webmaster, +social media guru, +graphic designer, +full-fledged ad agency). All they really want me to do is sell, sell, sell memberships (plus fulfill all of my other roles perfectly each week with only 15 hours to do it in). I am at my wits end. When I obtained this position a few months back part of me wondered if having a stable work-from-home position was too good to be true and that the stability part was some sort of mirage...well turns out it may be. I am not sure how much longer I will last if I don't sell enough memberships. Either I will get fired or I will quit because talking on the phone this much every week has been wreaking havoc on my jaw which I had finally gotten calmed down until a few weeks ago. Now it's back into another painful TMJ flare-up from all the talking I've been doing when I'm supposed to be resting it.

You may be wondering what prompted all my recent telemarketing efforts. My supervisor had a very "serious" conversation with me about the lack of members I've been bringing in and basically gave me a warning that I need to bring in more members or else she will have to step in and do my job for me and collect the pay for it as well (leaving me out of a job completely). The worst part about this serious conversation is that she talked down to me in a very condescending way and I simply took it and said "I understand, I understand," repeatedly instead of standing up for myself and asking her not to speak to me that way all because I am so desperate to have a job for the income it brings in even though this is clearly the wrong job. It is so tough to be focusing every last ounce of energy I can muster up on a job where my efforts aren't even appreciated.

As you may know, my disability application is currently being processed. So I am trying my best to hang on to this job until then otherwise I will have no income whatsoever. So frustrating. Being sick is hard enough. But being sick and having to worry about finances is a predicament many chronically ill people are all too familiar with. I think it's ridiculous that we live in a country where we have to work so hard and wait tirelessly for months if not years to "prove" our rare, chronic and debilitating illnesses to the government so that they can dole out a a small stipend that enables the disabled to live below the poverty level and have to scrounge for every dime while they spend billions on wars overseas. The priorities of most politicians are severely skewed in my book.

I am sure this is an incredibly whiny and pathetic blog post for which I apologize. I am sure many of you can relate or know someone who is much worse off. The thing that has been adding insult to injury today is the fact that I did not receive an invitation to my cousin's wedding. The invitations were all sent out last week and I did not receive one. Although my cousin has grown into a beligerent, selfish alcholic in recent years, we still grew up together, and I never realized it until now that he apparently couldn't stand me. Or maybe its that he knows I won't buy him an expensive enough gift for his taste so he didn't bother to send me an invitation. I have always tried to include him in everything, always remembered him on Christmases and birthdays (although he has never remembered mine, or anyone else's for that matter). He shows up to my grandparent's house on Christmas day every year for about twenty minutes simply to collect his gifts without ever thanking anyone or bringing as much as a card to my grandparents who have always gone above and beyond for him his whole life. This is where his selfishness comes into play. Sure, maybe not everyone is generous by nature, but come on. He could do SOMETHING for them, ONCE IN AWHILE. I am not sure why he couldn't spare a couple bucks for a card or a box of candy to show his gratitude to them. He appears ungrateful for all the things our family has done for him. Growing up he had cars and cash thrown at him even though he was somewhat of a juvenile delinquent who dropped out of school. Yet somehow he lucked out and makes more money than anyone in the family although he didn't ever graduate high school. There is simply no excuse for him not to bring a card or candy to our grandparents on Christmas. But he never does. That kid disgusts me. He is 27 years old and should certainly know better by now. The sad thing is, his fiancee isn't much better in the social graces department.

Needless to say I have written them both off for now and trying my best not to take things to heart but it still doesn't change the fact that being snubbed by my own flesh and blood was hurtful and the damage has already been done. I am way too sensitive about things like this and unhealthily internalize my emotions but the truth is I have always felt like an outsider in my own family. At times I feel as if I'm adopted or something because some of my relatives don't treat me like family, especially since getting sick. It should certainly make for an awkward holiday if my cousin and his fiancee decide to show their faces at my grandparents house expecting their gifts like usual. It makes me sick to my stomach. If they show up I will have to go for a walk so I don't say something out of line, (even though they would have it coming!) At the end of the day I suppose I care way too much about what other people think of me and that gives them power over me. It truly is a waste of my energies to be focusing on this right now, I just can't help but have hurt feelings over this though. How much is enough? Times like this I wish I could distance myself from everyone and everything and check into a spa for a week or two...heck, maybe never check out. Find a way to live at a spa. Then my problems would be dissolved. Or at least easier to cope with. Next year my Christmas present to myself is going to be a guilt-free week at a spa.

Does New Diagnosis Explain Everything?

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

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

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

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

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

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

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

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

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

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

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

The Missing Puzzle Piece?

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

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

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

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

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

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

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

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

Atlas Orthogonal Chiropractic: Does It Work?

Although I am a perpetual skeptic, and I openly admit that I don't entirely understand the science behind it, chiropractic adjustments have worked wonders for me. Particularly for my excruciatingly painful TMJ headaches. Following my car accident, I completed 4 long months of physical therapy and experienced little to no pain relief but a slightly improved range of motion. I also endured several massages, some of which offered temporary (lasting a few hours) relief and muscle relaxation, others which left me in worse pain than I had started with. I even completed a few months of bi-weekly acupuncture treatments which helped significantly, but the effects only lasted a day or two. About the only thing I didn't try during that period was chiropractic care, and I'm not really sure why. No one had suggested it yet. But I sure wish they would have.

About a year after my accident and I was still suffering from chronic, intense daily headaches (even after being fitted for and wearing my first custom mouthguard or 'therapeutic jaw splint' as they called it, on a daily basis). I simply couldn't stand the pain anymore. I had tried just about every over-the-counter pain relief method known to man, heat, ice, and even several prescription narcotic pain meds, and none of these offered even momentary relief. I was beginning to think that life was simply going to be filled with chronic and debilitating pain, which was a disturbing, discouraging, and painful realization for me. Everyone told me TMJ pain was among the hardest to extinguish in the human body, as the temporomandibular joint is constantly at work and never rests completely (it is at work when talking, eating, and even breathing). Basically, jaw joints never get a break. I consumed an exclusively liquid diet, wore my mouthguard day and night as instructed, and refrained from talking, chewing, singing--basically everything I previously enjoyed. At that point in time I would have been completely satisfied with even a slight improvement in the intensity of the pain.

One day a coworker recommended her chiropractor to me. She said he used a quick (2-3 seconds) and painless method called the atlas adjustment. I had never heard of the atlas before and wondered what it was and what adjusting it could do for my headaches. So I figured why not give it a try, it couldn't have made things any worse. At the same time, I was afraid that if this didn't work, I might be all out of options and therefore be sentenced to a miserable life of pain. Luckily, that was not the case. My car insurance agreed to cover my chiropractic care until my benefits ran out. I had a few x-rays taken of my head and neck and some manual measurements performed by the chiropractor. He then determined the appropriate settings on the machine to adjust my atlas to. The atlas is the uppermost vertebra of the spine, also known as C1. The heavy human head essentially rests upon that tiny vertebra and if you have have ever been in a car accident of any kind or sustained any kind of fall or physical injury, then chances are your atlas may be off kilter. If it is off by even the slightest bit, a number of serious health and pain conditions may result. My chiropractor seemed to think that if he could get my atlas securely back into place (turns out mine was quite far off) that it would alleviate some of the pressure and pain in my neck, and encourage my jaw to also fall back into proper alignment. I laid on my right side as a tiny needle-like instrument rested behind my left ear and vibrated gently for a few seconds, completely painlessly. For the first month or two, I had 2-3 of these adjustments a week. Then weened off to once a week, then once a month, which seems to keep my atlas in place. However, the past 6 months or so I had not been to the chiropractor at all due to a change in insurance, and once again the bad headaches began to recur.

Last week I suffered one that lasted 4 days before I finally decided that I had to go to the chiropractor whether I had to pay out of pocket or not. Thank goodness I did. This time, all it took was one adjustment, and about 20 minutes later my persistent headache pain started to ease off, and within an hour it was gone. I awoke the next morning with a completely pain-free neck and jaw for the first time in several months. And the relief lasted for 4 whole blissful days. Then I went to the grocery store. The checker bagged my groceries so heavy that I had a hard time just getting them from the cart into the car. My chiropractor does not advise any heavy lifting, especially in the first few days following an adjustment. Well, those heavy grocery bags did the trick and the next morning I woke up with my usual jaw headache. So although atlas orthogonal adjustments certainly do work, the effects don't always last, especially if you engage in any strenuous activity afterwards. So looks like I will be going back to my chiropractor as soon as the snow lifts. Even if I end up having to pay, it's well worth it to be pain-free.