Fall FaceCaddy Giveaway!!

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

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

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

Blogger's New Look: Not Cool

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

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

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

Perfect Turnout Comes With A Price

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

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



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



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

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


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

Feels like Fall

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

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

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

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

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