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!

BackCaddy Review!

Anyone who doesn't know about the CaddyWraps line yet should. Not just people in chronic pain (like me lately) but anyone who has a pulse. Last month I introduced you to the FaceCaddy, which has been a godsend for helping me cope with intense TMJD headaches. Anyone who goes to the dentist should own one!

The BackCaddy utlizes the same time-tested insulated ice/heat technology to provide lasting warmth or cold therapy to relieve sore muscles and joints. The BackCaddy helped me get through a particularly painful period this month: I strapped it around my waist to help relieve menstrual cramps. Normally I wear a ThermaCare Heat Wrap but those are a bit pricey and add up since they are a one-time use product. I also have a trusty hot water bottle but it sometimes leaks and I have actually burnt myself with it before because I filled it up with too hot of water.

The BackCaddy on the other hand, is foolproof. Comfortable, portable and powerful. I popped the large gel pack into the microwave for less than 2 minutes, placed it in the insulated BackCaddy and strapped it on for several hours. To my pleasant surprise it stayed warm until I removed it! I REALLY REALLY wish I would've owned one of these right after my appendectomy earlier this year. The hospital sent me home with an awkward, rock hard ice pack that leaked. The BackCaddy would have saved me from extra aggravation and suffering for sure.

I recommend the BackCaddy without reservation for anyone suffering from EDS, back problems, menstrual cramps or even abdominal surgery recovery. It is available in two different adjustable sizes. At 5'3" and 115 pounds I am far from a giant, but I was able to wrap the BackCaddy taut around my waist to fit perfectly and comfortably.

Also, I was pleasantly surprised to find that the BackCaddy features gentle compression which is GREAT for POTS patients, especially in the abdominal area where our blood tends to pool following meals. Would work well with the gel icepack (included) in the summertime as a more affordable alternative to a cooling vest and the extra compression the BackCaddy provides is an added bonus for any potsy.

You can purchase a BackCaddy and the entire CaddyWraps line at CaddyWraps.com or Amazon.com.

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.