On the Lighter Side of Life...

After about a week of maintaining the 'woe is me' attitude since the geneticist diagnosed me with Ehlers-Danlos Syndrome, I am finally starting to get my spirits back up to normal. The other day a friend of mine even complimented me for getting dressed! Nothing fancy, just jeans and a tee, but it was a vast improvement from the grungy pajamas I had been sporting.

Tomorrow is my first (and hopefully only) day of physical therapy to learn a home joint stabilization exercise regime and learn how not to hyperextend my joints. Something I have probably been inadvertently doing for years. I definitely hyperextend my knees when I stand, I just never knew what it was called before. It's so funny how suddenly putting a name to things can make you more aware of them. I never realized there was anything wrong or abnormal about the way I stood. No one had ever called it to my attention before. I recently stumbled upon an interesting blog about dance injury and hypermobility. It really helped to clarify for me how movement is linked to hypermobility and vice versa.

In addition to reading informative blogs about EDS, I have also been engaging in a little good old-fashioned TV-watching escapism. Seeing as it's nearly 2 am and I can't sleep, I figured I would post all about my Fall television schedule for your reading pleasure.

Mondays it's all about Being Erica. The fifth and final season promises to answer all questions and tie up all loose ends of the Erica time-travel saga. I watch this on CBC at 9 pm. The latest season is not available on any U.S. stations yet although rumor has it ABC is already slated to remake it...odd considering the Canadian version is in English. Guess the American way is to ruin, I mean remake, perfectly good foreign shows (Can you say, Skins anyone?)

Tuesdays I am sticking with Glee. So far this season is already much more promising than last season with the addition of The Glee Project winner/Celtic Thunder crooner Damien McGinty alone. He plays a foreign exchange student whom Britney mistakes for a magic leprechaun. He decides to play along with her fantasy by granting her a box of Lucky Charms filled exclusively with marshmallows. It was by far the most priceless Glee moment of all time.

Wednesdays I am hooked on Revenge and have gotten several of my friends hooked as well. I was a huge Brothers & Sisters fan but sadly ABC (what some call the 'Already Been Cancelled' network) aired the series finale unexpectedly last season due to a decline in ratings. Luckily Emily VanCamp had a newer and perhaps much more promising role up her sleeve. On Revenge she plays the duplicitous Emily Thorne, a young woman hell-bent on achieving the ultimate vengeance, artfully taking down her framed father's former enemies one by one in an elite Hamptons neighborhood she returns to as an adult, posing as the poised and innocent girl next door. The writing is smart, the acting is good, the plot is fraught with unpredictable twists and turns and the male eye-candy is currently unmatched on primetime TV. Three cute male main characters? That's what I call good television.

Thursdays I am not ashamed to admit that I tune into the new Beavis and Butthead on MTV. In my opinion, they are every bit as funny as I remember from watching them as a kid. Beavis and Butthead always make me forget any serious matters at hand and have a few good laughs. They are having a field day being MTV's resident reality television commentators. Listening to their humorously blunt commentary on Jersey Shore and 16 and Pregnant is endlessly amusing. They simply articulate what the rest of us are probably thinking when we watch the debaucherous Snookie in action.

On Fridays I will occasionally watch Extreme Makeover: Home Edition but I can't say that I'm hooked on it. On weekends I prefer to engage in Smallville marathons with a friend who got me hooked on the series. We have been meeting for months now to watch the entire series together. We are only half-way through season three but it just keeps getting better and better. I am normally not a sci-fi fan, but this series is infused with enough good music, pop culture references and exquisitely built men to make me happy. And believe it or not, Clark Kent, later known as Superman, is actually a highly relatable character for those with chronic illness. His abilities render him different. He is essentially an outsider to his peers and only shares his secret with a very small group of people for fear of persecution. Kind of reminds me how getting sick has often made me feel like an outsider among my 'normal' friends.

When I'm not watching TV, I'm probably listening to Robert Schwartzman's new album Double Capricorn. I am a huge fan of him in Rooney, was a fan of Solobob, and now a fan of his latest solo endeavor as well. This album is slightly reminiscent of Rooney which is probably why I am so hooked on it. It definitely reminds me of happier times standing front and center in the crowd at concerts. I would give anything to be able to do that again without having to worry about passing out publicly. Maybe someday. Since Robert has yet to release a video for this album, I'll leave you with a video from another one of my favorite bands, Our Lady Peace. I heard this one during a Smallville marathon the other day and had forgotten how much I love this song!

Our Lady Peace - Somewhere Out There - C by Elemiste

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.

Help Rachel Breathe Merchandise

So many wonderful and talented people are afflicted with EDS and POTS. Rachel Phillips is one of them. She is currently fighting for her life as there is significant lung involvement. Rachel is in need of a lifesaving surgery that has not yet been performed in the U.S. A Swedish surgeon is willing to perform a new groundbreaking procedure on her. Rachel was once a brilliant ballerina, able to breathe, move and live life to the fullest. Let's help give her life back, she deserves it! To read more about Rachel's story and see videos and photos of her stunning performances, please visit helprachelbreathe.com.

The beautiful image of Rachel pictured above was done by talented artist and EDS patient Michaela Oteri. Michaela is not only an amazing artist, she is also incredibly kind and generous and is donating all proceeds raised to Rachel. Check out all the merchandise options at CafePress. You will not only be getting a custom shirt, necklace or poster, you will also be giving Rachel a chance at survival. The merchandise is reasonably priced so spread the word. The holidays are right around the corner and a custom item would be a great gift idea for an EDS patient or a dancer in your life.

29 Days of Giving in Honor of Alexa Simmons

The dysautonomia and EDS community has suffered a great loss from the passing of our friend Alexa Simmons. Her positive attitude and caring demeanor has always been an inspiration. Although she left us too soon, she touched so many lives while she was with us. People suffering from similarly debilitating conditions worldwide all consider Alexa their friend. She was a friend to everyone. Although we're all still experiencing a range of extreme emotions right now (sadness, anger, loss) what I have learned about Alexa tells me she would want us to be as positive as possible right now and channel our collective energy into something positive, whether it's being even more motivated to search for a cure or just extending friendship and gratitude to one another on a daily basis. I often wish I were a gifted research scientist who could miraculously find a cure for our rare and all-too-often overlooked conditions, but let's face it, unfortunately science is not my forte. What I can do, however, is something small but meaningful and positive each day to honor her memory.

A little over a month ago I had the privilege of speaking with the author of one of my favorite books, 29 Gifts. Cami Walker is her name. Cami suffers from MS and experiences symptoms similar to what many of us endure with dysautonomia or EDS. Like Alexa, Cami is another inspiration to me. She lives each day in the spirit of gratitude and giving, even when she feels she has nothing left to give. Although I began my initial 29 days of giving a month ago, about a week into it I stopped when I experienced a minor health setback. Since then, I have been a bit down in the dumps and have not had the inspiration to begin my 29-day gift giving challenge all over again. Now I do. And it's Alexa. I am going to embark on 29 days of continuous, mindful, selfless giving in her honor. I invite you all to join me. Giving is a simple concept and does not have to be done in the monetary or material sense. Giving can be as simple as handing a Kleenex to a stranger in need or visiting an elderly neighbor. Doing what you can for someone else, paying it forward, if you will. If you would like to join me, feel free to log on to the 29 Gifts website, a supportive social network to gather ideas and inspiration or to chronicle your giving journey.

If you are able or inclined to give a monetary gift, please consider donating to EDSNC in Alexa's memory.

My Medical Records: Fact or Fiction?

As I have been proudly checking things off of my ever-expanding 'To Do' list, I thought I would share that I finally ordered and received my medical records (the vast majority of them anyway) from the past six years. After a cursory review of them it is abundantly clear exactly when I got sick as my heart rate went from 62 in the office a few months prior to getting sick with POTS to over 100 at nearly every subsequent appointment. I only had a few appointments during the two years before I got sick, one for a sinus infection and one for painful periods. Other than that, I was healthy as a horse. Then in September 2007 the doctors appointments, and hospital visits, came nearly on a weekly basis for several months. Each time I suffered tachycardia, palpitations, weakness and fatigue.

My hospital bloodwork revealed a low potassium level several times. The doctors and nurses informed me at the time while they forced me to consume a sickening concoction of concentrated liquid potassium drink to bring my level back up to normal. What they neglected to tell me during all these hospital visits was that I consistently had other 'high' and 'low' markers in my bloodwork that didn't fall within normal range. I was a bit shocked to discover this while leafing through my medical records. My mom would always remember to ask them in the hospital (in case I didn't remember to ask or couldn't) if all my bloodwork looked okay and was in the normal range. They would always reply, "yes, everything looks good." So much for trusting ER docs. As long as you're not about to immediately die, they send you on your way home with instructions to take it easy and follow up with your regular doctor. Lovely. At the time my regular doctor was a woman who only knew how to shove antidepressant samples down her patients' throats.

Another thing that interested me about my medical records: certain doctors would make snide remarks in their notes about my mother, my neighbor or my grandmother accompanying me to appointments, saying that they were very vocal, or answered too many questions on my behalf. These were the times I was so sick I could hardly walk into an appointment on my own or speak for myself. I was glad they were there to advocate for me and make things a bit easier on me. But according to my records a few of the doctors I saw seemed to mind. Their jobs are made much easier I'm sure when they don't have "difficult" relatives around to answer to. Some doctors can't stand to be inconvenienced, questioned or stood up to in any way. This is not true of all doctors, but a large chunk of them who believe they are superior to their patients and respective families simply because they are the one with the letters behind their name and some general experience (although just about every hospital doctor I've seen has lacked any specific experience in treating or even recognizing dysautonomia).

Enough of my rant for now, just thought I would stress the importance of obtaining and reviewing your own medical records to make sure you don't have other underlying conditions that may be contributing to or exacerbating your dysautonomia. Oh, by the way, I now apparently have "mild central airway disease" as indicated by a chest x-ray in 09 compared to the one I had done in 08 which was fine. Would have been nice if someone from the hospital had told me this back when I had the x-ray done. Not sure what the heck it is, if there's anything I can do about it, or if it even causes any symptoms. I am assuming it's not that big of a deal otherwise the ER doc would have told me about it, right? Not necessarily. If there's one thing I've learned by reviewing my medical history on paper it's that it's never safe to assume anything. It's best to have the proof right there in front of you on paper. A lot of doctors are too lax to care whether they tell you everything or not, many are too busy to give you the full story, and many are just human and make mistakes, forgetting to tell you something that might have been important. Make a habit of requesting your medical records after every important appointment now on. I'm going to make sure I do from now on.

Updates and Downtime

I feel like it has been quite awhile since I have actually written an update on my life. I haven't had a whole lot of downtime lately, but finally had some tonight so thought I'd better take this opportunity to share. Many big changes have happened in the past month. First off, I am currently in the process of applying for disability. It is a lengthy, confusing process fraught with many forms, but luckily I have a good lawyer and a great paralegal in my court to help answer all my questions. Thankfully they are understanding and work with me over the phone so I don't have to worry about making it to any appointments in person, which is a huge relief.

During my last visit to the EP, he brought up the whole disability thing, saying that it would be a good idea to apply soon, kindly reminding me that it didn't mean I would have to be on it forever. Apparently it's much much easier to go off of disability than to get on it of course. So I gave in. Signed up with a lawyer. Paperwork is in. Now the waiting begins. Apparently it can take anywhere from 9 months to 2 years total to get a hearing before a judge. Had I have known that I would be sick for four years, I would have applied the day I got sick. But my optimism prevailed as I struggled to work, got laid off and sought stable work-from-home employment (the chupacabra of the job market it seems).

That said, I am proud to report that my job-seeking diligence has finally paid off and I am gainfully employed by a nonprofit organization working from home part-time. So far so good. I am their sole employee, the hours are flexible and my boss has been wonderful, providing me with plenty of guidance and input, which is rare to find nowadays, especially in a telecommute position. The only real downside? The pay is not great and not enough to support myself on. It is grant-funded and will last for a year. The good part is, it's okay with my lawyer that I'm working because I'm working such a limited number of hours exclusively from home and I'm not making over the allowed amount to still be considered disabled. Even if I am granted disability, I hope to still work part-time doing something meaningful whenever I am able. It renews a sense of purpose and accomplishment within me that has been missing for a long time. And working 15 hours per week makes the time fly by as I typically work a little bit each day.

Health-wise things have been a little better lately, knock on wood. After my extreme high blood pressure episode this summer, I'm not sure if I should be happy or unhappy to report that my blood pressure now hovers around the 90's over 60's most days. If I am up and about it sometimes gets to the low 100's. At night in bed it is 80's over 50's sometimes. Believe it or not I have never paid much attention to my blood pressure before and neither has my EP. Until the high blood pressure scare this summer, the only thing I ever noticed or paid any attention to was my high heart rate. I can't even remember what my blood pressure was like before the extreme highs this summer and the mild lows now. Mornings are still very rough for me and I am very sluggish so I try to do most of my work in the afternoons or evenings whenever I have the energy.

I am consuming copious amounts of salt again and plenty of fluids of course. Sometimes I eat so many chips even I get tired of them. However for those of you who need some tasty new chips to try, I am currently loving Trader Joe's Hawaiian Style Hickory Barbecue Potato Chips. Crunchy chips, although satisfying and great for my salt intake, not so great for my TMJ, which has been a royal pain again lately. I am supposed to take flexeril (a muscle relaxant) for it every night before bed, but haven't taken any in at least a month because it lowers blood pressure and I don't need that unwanted side effect at the moment. I would really like to try botox for my TMJ so they can inject the specific problematic muscles that keep spasming and I won't have to rely on Tylenol and muscle relaxers for relief. Botox injections are supposed to provide relief from headaches for 2-3 months after the injection. I can't even imagine what I would do with myself if I had 2-3 months without TMJ headaches! It would be amazing! Sure I'd still have the whole POTS thing to deal with, but I feel like I would be able to devote more time/energy to exercise if I didn't get awakened every morning with intense pain.

This TMJ thing is really cutting into my sleep. And without sleep I am essentially useless. My POTS symptoms (namely wooziness/lightheadedness) are WAY worse on 4 hours of sleep a night than they are on the rare occasion I get a full 7 or 8. After the nights I have actually slept enough, my POTS symptoms are much, much more manageable. I know I definitely haven't been getting enough sleep lately because I can barely keep my eyes open watching my favorite shows with friends. I always used to be the energetic one, never the one who couldn't stay awake during a movie or a half-hour sitcom for that matter. Luckily they are understanding but I still feel rude when a friend goes out of their way to come visit me and I am nodding off mid-sentence. Is this "normal" for dysautonomia? I am wondering if it's somehow related to my lower blood pressure readings. I also can't help but wonder if this is how narcoleptics feel when falling asleep at inappropriate times. I try to yawn, eat, or keep myself moving so I won't fall asleep on my company, but it's all to no avail. I worry that friends will stop coming to visit me altogether if I fall asleep on them every time because they will assume I'm not up for company anymore.

However, I am hoping to be functioning more normally in the near future again because I will finally be embarking on an exercise research study. At last the folks in Texas faxed the paperwork to my doctor's office to enroll in Dr. Levine's Exercise Research Protocol for POTS. I am super-excited. It has been about 3 months since I first contacted them and have been anxiously awaiting their info. My next appointment with my EP is on October 13 and I hope to get started shortly thereafter once they check and record my current numbers. I ordered what looks like a simple heart rate monitor on Amazon (have yet to try it) that arrived yesterday and am ready to rock and roll on my recumbent bike. All I have left to do is create some upbeat playlists that will hopefully keep me motivated during workouts. Let me know if you have any song suggestions, I'd love to hear them!

Give Your Body A Boost!

I have been drinking Boost for a little over a month now ever since my grandpa persuaded me to try it when I had an upset stomach one day and couldn't manage to choke down any real food. I think I had eaten some bad food one night, vomited and vomited and felt horrible afterwards. Nothing appealed to me after that but I knew I needed to eat and drink the next day to keep my electrolytes stable. My grandpa swears by his Boost High Protein drink so I decided to humor him and give it a try. To my surprise, it was at least somewhat palatable and did give me an almost instant "boost" of energy. Luckily Boost does not contain caffeine or any other crazy stimulant ingredients, just vitamins, minerals and protein. It is, however, derived from milk protein so be careful if you're lactose intolerant.

I don't normally take any vitamins or special supplements but I try to be somewhat conscious of what I eat on a daily basis. That is, I pay attention to the important stuff like getting plenty of salt, potassium and fluid intake. I definitely wouldn't say I eat a perfect diet though. I still eat junky processed foods when I have a craving, but overall I try to get a good variety of different foods in so didn't think my body was really lacking anything in particular. Perhaps that's why I was really surprised by the way my body reacted to Boost. After a few days of drinking it, my resting heart rate was totally normal (60's sitting!) and only jumped to the 90's when I stood up. I realize that that jump still meets the criteria for POTS, however, it is much better than my usual jump into the 120's. I have been drinking one a day religiously for the past month and I am pleased to report that my numbers have been looking much, much better. I don't know why, maybe my body was lacking some essential nutrient contained in Boost, or maybe its pure coincidence and my POTS is finally cooperating for once, but I really have been feeling better most days. I hope this trend continues. I am definitely going to keep drinking Boost, it couldn't hurt. My gut instinct says it is at least partially responsible for the recent improvement in my numbers and how I feel.

Inspirational Art by EDS Patient Michaela Oteri

This inspirational piece entitled 'Hope' by Michaela Oteri depicts the beauty and quiet strength of people with chronic illness. See more of Michaela's art here. She is available to do custom commissioned pieces at an affordable price.

Dysautonomia Awareness Week 2011, Sept. 12-19, Pass it on!!!

Thanks to talented graphic designer Rachael Rodriguez for creating this awesome poster for Dysautonomia Awareness Week!