Dr. Levine's Exercise Protocol for POTS: The Beginning

Considering it's a new year, what better time to embark on my 3-month exercise journey? Truth be told, I would have loved to have started this protocol about 6 months ago but it was difficult to get a hold of Levine's associates in Texas about the study and by the time I finally got the info from them I was sick again. Now that my awful sinus/ear infection and stomach issues are better, I have started Levine's protocol. So far, so good although I will say 50 consecutive minutes on a recumbent bike with a high heart rate is anything but easy.

Last night I rode just over 18 miles at an average speed of 21 miles per hour, averaged a heart rate of 136 with a peak heart rate of 149, and burnt a total of (only!) 323 calories according to my bike. It seems to me after 18 miles I probably burnt way more calories than that! I have the bike set up in the living room although I find it tough to focus on television while I'm riding. In fact, during intense exercise like that I find it's actually much easier to just shut my eyes as they tend to get really dry when I exercise. Anyone else experience that/know what causes it?

So I strapped on my heart rate monitor and ipod, closed my eyes and went to work. In 50 minutes I managed to listen to a new favorite of mine, Anna Nalick's 'Broken Doll & Odds & Ends.' I am going to use music to motivate me and listen to a different artist each exercise session as 50 minutes is usually long enough to listen to a complete album in its entirety.

Today I am supposed to be doing weight training according to the schedule that Levine's folks created for me. I suppose I should do that soon although I am still tired from yesterday and my knees are a bit sore. I cannot reveal any specifics of the program, but I believe each workout plan is tailored to your individual heart rate so my regime may look different from the next person's anyway.

If you have any interest in trying the program, I would recommend contact Dr. Levine's associates as soon as possible as it may take months before you are accepted into the study to begin. If you test positive for POTS according to a simple 10-minute stand test (much easier than a tilt-table test!) performed and recorded by your doctor in the office, you will most likely be accepted into the study and receive your own customized workout regime and schedule based on your resting and standing heart rates.

I still have a few questions I need to run by Levine's people. For instance, does it matter if I wear compression stockings while exercising? What if I can't get my heart rate up high enough into the zones that I'm supposed to be working in? So far it has been a real challenge for me to even get my heart rate up into the 140's while exercising (I can achieve that hr standing still, no problem, but riding the bike is much harder).

I am going to go do my exercises now before it gets any closer to bedtime. Please let me know if you have any suggestions for music! I will listen to just about anything and enjoy listening to stuff I've never heard before. Going to try to make this exercise journey as painless, fun and interesting as possible. The possibility of feeling better is motivation enough I just think music will help the time go much faster.

For your listening enjoyment, here is one of my favorite Anna Nalick songs, 'Shine.' One of my favorite lyrics is, 'Isn't it time you got over how fragile you are?' It definitely resonated with me for obvious reasons. I'm fragile, but it's up to me to make myself stronger.



I am also interested to hear if anyone has tried Levine's protocol or a different exercise regime and hear about your results, how you felt, what to expect, etc. Wish me luck! I intend to post regular updates about my exercise experiences and progress.

Bygones!

A friend of mine recommended a book to me a few years ago called 'Heal Your Body' by Louise Hay. It is a quick read, a handbook of sorts about the emotional roots of physical ailments and illness. While I am a firm believer that most physical problems are no one's 'fault,' I do believe that a lifetime of negative emotions brewing on the inside can contribute to developing a physical health problem or aggravate an existing one. Many health problems (ulcers, heart attacks, etc) are thought to be closely linked to stress. Whether or not this theory holds any testable scientific validity, it certainly couldn't hurt to let go of negative thoughts and energies that often hold us back in life or keep us stagnating in the same place.

Change is healthy, positive change is of course best. I for one, tend to hold onto and bottle up too many negative feelings and it definitely doesn't do me much good. So this year, I am not going to make a long list of resolutions as I have done in the past. I am simply going to try to achieve one: to let go of all negativity. It will be no easy feat, I am sure. But I have to give it a try. I am tired of feeling victimized by my father and his side of the family. Tired of being dismissed by certain relatives here. And of course, very very tired of dealing with chronic illnesses. I feel like I have lost touch with who I used to be: happy, carefree, independent, energetic, fearless. The old me is still in there somewhere just itching to get out, but I have lost touch with her these past four years. I would love to feel like myself again, physically and emotionally. I may not be able to get my physical health back completely, but I feel like I have at least some control over my own emotional well-being. A big part of that I think, is letting go of all the negative thoughts, letting bygones be bygones and trying to get back in touch with the real me.

What is your greatest goal for the new year? If you could only achieve one, what would it be?

Nutrition and Chronic Illness

As the new year swiftly approaches, many of us resolve to exercise and eat healthier. My usual resolutions, however well-intentioned, rarely endure beyond January. But this year, I am going to make a concerted effort to really pay attention to what I eat. My biggest problem is absent-minded eating. That is, stuffing my face with random foods without regard to their real nutritional value. I am not a calorie-counter and my objective is not to lose weight but simply to nourish my body with more whole, less processed foods. I will also be aiming to achieve a more 'balanced' diet by consuming a wider variety of foods.

That said, I am thrilled to welcome my first guest blogger, Melanie Bowen, to Defying Gravity. Melanie is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics. Thank you, Melanie, for reminding us that every illness, whether terminal or chronic, deserves special attention when it comes to nutrition.



Nutrition and Chronic Illness

Good nutrition is essential to preventing chronic illnesses such as cancer or kidney disease. However, if you already suffer from one of these chronic illnesses, nutrition is even more important. Eating properly can help offset the negative effects of treatments for your disease and give you more energy to complete daily tasks. In some cases, it can even increase your life expectancy to change your diet. Thus, eating balanced meals should be part of your disease management program.



Nutrition is an important issue for people who suffer from chronic illnesses and cancers. Cancer can rob the body of the ability to digest vitamins, protein and other nutrients correctly from food, so that cancer patients often lose weight and become weak even when they're eating properly. For this reason, nutritional supplements such as vitamins or calcium pills are an important part of a cancer patient's treatment plan. This is especially important for patients who are taking chemotherapy treatments or other aggressive cancer treatments. These treatments can make patients nauseous, negatively affect appetite and leave patients feeling weak. However, nutritional supplements in combination with healthy foods can help alleviate many of these symptoms. Eating regularly and getting enough nutrition can eliminate nausea and give cancer patients more energy. Simply relieving the feeling of being sick all the time can help patients lead higher quality lives, as they will be able to socialize with friends and do some of their regular activities once they get the nausea under control and develop some energy again. 



Nutrition is also important if you have a chronic illness rather than a terminal illness. Diabetes and hypertension are two such illnesses that can benefit from diet. Patients who suffer from these diseases often become dependent on medication to keep symptoms under control. However, medication has side effects, so not all patients can tolerate medication. In addition, changing one’s diet can reverse the effects of some chronic illnesses. People who suffer from Type 2 Diabetes can often successfully manage their illness by changing their diet. As the person's blood sugar level goes down to a normal level, she'll have more energy; in addition some symptoms, such as blurred vision, will disappear altogether. Diabetes patients who handle their disease through diet and nutrition often feel healthier overall and lose excess weight that can contribute to feeling sluggish as well as to having the condition.



It's fairly easy to make nutritional changes to help manage your chronic or terminal illness. Talking to a dietician or nutritionist at the hospital where you take your treatments can point you in the right direction. You can gradually add some nutritional supplements or make changes to your diet to regain the energy, happiness and hope you need to live a longer and higher quality life.

Bah Humbug!

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

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

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

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

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

Gift Ideas for POTS/EDS Patients

'Tis the season for consumerism. I don't know about you, but I appreciate useful gifts that help improve my quality of life. Here are a few products I recommend without reservation, either for yourself or someone else who suffers from POTS and/or EDS.

Splurges:

1) Apple MacBook Pro. Powerful enough to do just about anything, with a large, clear screen for entertainment. Portable enough to take to bed with you. The only computer you'll ever need. Mine ran efficiently for nearly 8 years after withstanding four years of overuse and abuse at university. At $2400, it's an investment, but one that is sure not to disappoint.

2) KitchenAid Stand Mixer. The gold standard in baking equipment. Save your energy (and your joints) while baking with this lovely, durable mixer. Another investment for the long haul at $250 but I promise you'll get your money's worth out of it.

3) Ugg boots. Yes some may argue that Uggs are ugly. In fact I used to think so myself. But that was before I owned a pair! I have had mine for 6 years now and they are without a doubt the comfiest, warmest footwear I own. My feet are chronically cold, but not in my uggs. And they have really gotten a tad more stylish over the years as well. Price varies.

4) Recumbent Stationary Bicycle. Although I am not thrilled with the brand I purchased, my neighbor has a pricier model in a different brand, XTerra which I love. It is much sturdier with a much smoother ride, the Rolls Royce of recumbent bikes. She purchased it at Costco for just under $800. The convenience of having one at home means I am more apt to ride it and can't use the 'I don't feel like going to the gym' excuse.

5) A Tempurpedic Mattress. Perhaps the single best investment a POTS/EDS patient can make to improve their quality of life. Do not purchase a new mattress impulsively though. Make sure you take the time to do your research and test different models out before committing to one. A comfy mattress can make a world of difference in alleviating aches and pains and helping you achieve more restful, restorative sleep. Something we could all use a bit more of! Price varies.

Steals:

1) Hot Water Bottle $10

2) Homedics Mini Massager $10

3) Omni Mini Massage Roller $10

4) Omron Heart Rate Monitor $35

5) Plantronics Cordless Phone Headset $10

Things To Be Thankful For

As I sit here achy and slightly feverish with a sore throat, nostrils I can't breathe out of, and eyes that feel like sandpaper, I figured why not reflect on a few of the positives in my life. Sure I am a little late for Thanksgiving (precisely when I contracted this superbug from my germ-carrying little cousins), but better late than never, right? Practicing an attitude of gratitude is supposed to have health benefits. Here is my top ten list of things I am thankful for this season. It's a mixed bag my friends. And spoiler-alert: I'm about to get pretty darn self-disclosive here.

1) My mom. Without her I would certainly cease to exist. She has loved me and taken care of me for 26 years, as a single parent for the last 20. I know raising me hasn't been easy on her financially or emotionally yet she still did a darn good job as a parent. Growing up she made sure I had every opportunity at my disposal. This has been a particularly tough year for me not just physically having to adapt to the new EDS diagnosis, but also emotionally from uncovering my foreign father's shady past. I corresponded with he and my grandmother earlier this year and the more I learn about them the more thankful I am that my mom and her side of the family raised me here in the great US of A. I have always been slightly curious about my father but now I know the truth. As far as I'm concerned he is a heartless, pathetic excuse for a human being. I am so glad my mom protected me from him all these years. I have come to the conclusion that it is healthier to never let him interrupt my life again, never speak to him again. But on the bright side, at least I can stop wondering about him and start appreciating the great family I do have in my life, my mom especially.

2) Answers. By answers I am primarily talking about my EDS diagnosis. Sure, it is crappy news. Very crappy news. I may be plagued with chronic pain for the rest of my life and may never be able to have biological children, but at least I won't be left in the dark to wonder why. Things are less scary when we have labels to put on them. I like to feel that I have some semblance of order and control over my health, so having a name to put on my constellation of symptoms should at least help inform my doctors and help me to not inadvertently hyperextend my joints anymore.

3) Friends. This goes for my in-person friends who have stuck around (even though I am not much fun anymore!) as well as my online family. I have met so many wonderful young women online whose stories and symptoms are all too similar to my own. It is so refreshing and comforting to have a 'family' who completely understands and empathizes with the things I am going through. Conversely, I love being able to lend an ear, some advice or just plain friendship to such amazing individuals. One thing I know to be true: POTS and EDS patients are good people. Some of the best in the world in my humble opinion. I am not sure where exactly I would be without the friendship and support of my online family. They have come to my rescue many times! I swear, they are all smarter than my doctors too.

4) Food. This may seem a bit silly to some of you, but I am thankful that I am able to eat (most) of the foods I love with minimal complications. After being on a liquid/mushy diet so much because of TMJ, being able to chew real food brings me great pleasure. Especially red velvet cupcakes, homemade fajitas, pizza without red sauce and double fudge cookie dough blizzards to name a few of my favorites. I also like a few healthy foods too but tend not to get as enthused about eating them.

5) Television. My window to the outside world beyond my bedroom. Television has been a constant in my life ever since I was a small child. I have fond memories of watching 'The Nanny,' 'The Cosby Show' and 'Full House' with my great grandmother nearly every night for as long as I can remember. Out sitcom ritual was always comforting to me, and even now I find myself revisiting those memories regularly. Just me, Big Grandma and my mom watching TGIF together. That is my idea of perfect family time. It should come as no surprise to any of my relatives that I chose to make a career out of TV, even if it was short-lived. Even now, television is often what bonds my friends and family together. Except now sitcoms are replaced with the crazy reality TV show of the day for our daily fodder. Pop culture in the background creates the soundtrack to my life.

6) Work. I feel very fortunate to have finally found a stable, flexible, part-time, work-from-home position that utilizes many of my previous skills from the TV and PR worlds. It doesn't quite pay the bills but I feel valued and productive again all while telecommuting. Most importantly, this job has afforded me the opportunity to feel a part of something again. The fact that I am contributing my skills to a non-profit I believe in makes it even better.

7) Relatives. Certain ones in particular. My grandparents have always been very involved in my life and genuinely interested in how I am doing and what I'm doing. It is nice to know I have kind grandparents like them who I can count on for anything. My cousin Michael has also been very helpful during this time. He is one of the only relatives I can think of who asks how I am doing and recalls the specific details of POTS/my life in general. I remember the day when he was born and can hardly believe he will be done with high school soon. I am proud to call him my cousin.

8) Music. Although I am longing to get back in the front row at concerts again, it is nice to still have music in my life via Pandora.com or my old-school ipod nano. Sometimes it is nice to tune out the world around me and escape into a song. You can take the girl out of ballet but you can't take the ballet out of the girl. I sometimes like to mentally choreograph a song in my head. I find that envisioning choreography to music makes exercise like recumbent biking much less tedious.

9) Technology. I'll admit, I definitely have a love/hate relationship with technology, but it has made my life easier overall. Without social networking tools like Facebook and Twitter, it would be much harder to stay connected to everyone in my life. That said, I am also thankful for my cellphone with cheap, unlimited minutes!

10) Home. With the high cost of living right now, I am very fortunate and thankful to have a roof over my head, once again thanks to my wonderful mother. Having a hand in decorating our home also makes me very happy. I often wonder if interior design is a career I should have/could still go into someday. It distracts me from my immediate health concerns and reminds me how important cultivating a sense of place really is. Especially for those of us who spend a disproportionate amount of time at home. Being comfortable and surrounded by beautiful colors and objects I love has become more of a priority for me in recent years.

Something else you can do in the safety and comfort of your own home is the gratitude dance. I highly recommend it. If you're able, start doing the gratitude dance at home each morning just for kicks. If you're seated or laying down, just do the arms or legs, whichever is most comfortable. Do it in public if you dare. It really gets the endorphins flowing!

Did Brittany Murphy Really Have Dysautonomia?

After yet another Netflix binge, a few flicks left me wondering if their lead actresses could have hypermobility and/or autonomic dysfunction. One is the ever-enchanting Brittany Murphy. I love her as an actress and always have. And although the critics gave it largely negative reviews, I loved her in 'Little Black Book' which I watched on Netflix last night. She looked thin, but not nearly as gaunt as she did in 'Uptown Girls.'

After her tragic, untimely death it was quickly rumored, at least in the online community, that Brittany Murphy may have in fact suffered from dysautonomia. Her half brother Jeff Bertolotti apparently suffers from it and suspects that his sister did as well. According to her myriad symptoms and sudden weight loss which he also experienced, it is quite possible she was plagued by the same condition. Many thought Murphy must have surely suffered from an eating disorder, but keep in mind that many POTS victims also fall prey to sudden weight loss. When I first fell ill I struggled to keep any meat on my bones and I remember my EP hinted at anorexia more than once saying he didn't like to feel my bones. It's sad that we have to prove that our physical symptoms aren't the manifestations of mental disorders. Even though I had a ravenous appetite and was eating everything in sight I still couldn't put on a pound. In addition to being thin, Murphy was also reportedly taking beta blockers for a benign heart arrhythmia...

I have to admit, Bertolotti's theory about Murphy makes sense. I remember seeing Murphy on a red carpet somewhere a few years ago and she completely lost her train of thought in what may have very well been nothing more than a typical 'potsy' brain fog moment most of us are all-too-familiar with. Instead Murphy was accused by the press of being a drug addict. Given that there were no illegal substances found in her system (just prescription/over the counter meds) and she died of pneumonia and anemia, it's pretty suspicious. How many 32-year-olds die of pneumonia? It would be fairly rare in a young, healthy individual unless her body/immune system was already compromised from something like a chronic illness. What is also eerily suspicious is that her late husband died in the same house a mere 6 months later of identical causes: pneumonia and anemia. Could there have been a strange and toxic mold encapsulating their house? Sources like ABC News say no. Most experts agree that they had similar lifestyles/habits that would have led them to the same cause of death. I still say it's more than an eerie coincidence that warrants further investigation.

Another celebrity I suspect may have a POTS-like illness is Kristen Stewart. A few months ago when she was interviewed by Jay Leno my mom and I both noticed that she could simply not sit still during the interview. She fidgeted constantly, so much that it was distracting. It looked as if it were more than nerves, like she really couldn't stop it. I fidget/move around constantly to keep myself from passing out. This is something I have done instinctively since I first got sick, I just didn't realize why I was doing it. We watched Stewart in 'The Yellow Handkerchief' on Netflix the other night. In her role she exhibited some hypermobility in the ballet moves. There were also no scenes were she sat perfectly still. I have yet to see a Twilight movie so not sure if she exhibits the same tendencies in all her films. The other day she was interviewed for a local program where I noticed she had a taped right wrist...signs of EDS perhaps? For the record I have been told that Kristin Stewart is my celebrity twin. Probably the pale skin.

*Please remember my opinions on this blog are purely speculation. I do not have any medical evidence to support my claims other than what I have read on the Internet. Everything here is pure conjecture.

POTS Letter For Students by Dr. Ahern and Stacy Reed, RN

For those of you POTS patients who are still in school and find yourselves struggling to get to class and managing to stay conscious and alert once you get there, this letter may be beneficial to give to your teachers, professors, school nurse or guidance counselor. I sure wish I would have had something like this to distribute to my professors during my senior year of college when I first fell ill with POTS. It would have made my academic life much easier and it would have been much easier for my instructors to understand exactly what I was going through. Trying to explain such debilitating and peculiar symptoms to people is often half the battle in my opinion. Luckily POTS patient Stacy Reed and her doctor Thomas Ahern have teamed up to create this letter which helps bridge the communication gap between students suffering from POTS and their instructors. Please feel free to use their verbiage and distribute this letter to your own teachers and professors, anyone who needs to know what you're going through on a practical level.

RE: Postural Orthostatic Tachycardia Syndrome (POTS)

To Whom It May Concern:

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome. This is a form of Dysautonomia, which is a malfunction of the autonomic nervous system, the system that regulates all of our automatic functions, such as heart rate, blood pressure, temperature regulation, blood flow, etc.

Patients with Dysautonomia often present with numerous symptoms. These include: loss of consciousness, a feeling that one is about to pass out, intermittent rapid heart rates, very low blood pressure, or significantly elevated blood pressure. Patients also describe symptoms of increased anxiousness, excessive sweating, recurrent headaches, dizziness, low-grade fevers, constipation, diarrhea, abdominal pain, and nausea.

Another symptom that impacts one’s school and work performance is the presence of periods of impaired cognitive function. Individuals who experience this often describe it as a “brain fog.” Patients with Dysautonomia are extremely sensitive to warm environments; avoidance of these environments is suggested. Prolonged periods of standing are extremely difficult, so patients may request to sit or lie down during class or work. As a result of these symptoms, individuals may also present with depression.

Intermittent absences from work and school are common.

It is imperative that patients have access to their prescribed medications, as well as fluid supplements and salty snacks. Access to fluids are necessary during class or work.

Other accommodations requested of schools on behalf of a patient include:

• Avoidance of known symptom triggers when possible.
• Permission to record classes and/or lectures, which can be reviewed at a later time.
• Longer test-taking times, 50% greater time.
• Communication with teachers of the individual’s condition, affirming that absences and slight delay in submission of course work may be necessary.
• The school nurse should be made aware that the normal sitting down vital signs are not adequate for these patients; orthostatic vital signs must be taken, supine, sitting, and standing heart rate and blood pressure, as well as the objective and subjective signs and symptoms in each of these positions.

It is important to understand the disabling nature of this condition. Although it is invisible to those looking on, it is very real to those experiencing it. Research has shown that patients with POTS have a quality of life similar to those with congestive heart failure or chronic lung disease.

(Information referenced from Thomas Ahern, MD, FACC; provided by Stacy Reed, RN, RRT-NPS November 2011.)

Violent Vertigo!

Last night I fell asleep around 1 am (that's actually early-ish for me and therefore a successful bedtime) and woke up from a nightmare around 6 am. I dreamt that I was in a rowboat with my mom at sunset and the water was peaceful. When we came to shore however, a live weasel climbed into our boat and on top of me. It bit me on my left hand. My mom grabbed the weasel in a bag and took it with us to the nearest medical center which was busy and full of young doctors- in-training flurrying around, none of whom were able to help tend to my weasel wound. They did say that they were testing the weasel for rabies, to make sure I wouldn't contract it from the bite. My dreams are quite detailed sometimes.

At that point I awoke from sleeping on my right side (which I normally never do because it tends to hurt my jaw). My jaw did not hurt but when I opened my eyes everything was spinning horribly. I shut my eyes again and tried to roll over onto my back. Still spinning and spinning. I shut my eyes for a few more minutes on my back and then tried to sit up a few inches slowly. More spinning. This cycle of me trying to gently reposition myself or sit up went on for about a half hour or so before it finally subsided. I managed to get in a few sips of water and about half a bottle of boost that had been sitting on my nightstand and once the dizziness had passed I fell back asleep for about five more hours but did not lay back down and slept sitting up the rest of the morning because I was afraid the vertigo might recur. All in all I slept for a total of ten hours last night (that's a lot of sleep for me in the same night!) although it was broken up for about an hour so make that two five hour naps. Around noon I woke up groggy and exhausted from another dream where I was jogging and then watching hula dancers walk on water beachside at sunset. Not a scary dream but supernatural and vivid nonetheless. What did I watch before bedtime to elicit such vivid dreams? Nothing but an episode of 'What Not to Wear,' harmless and largely lighthearted entertainment in my book. I never watch anything too heavy before bedtime because I know I'm prone to nightmares.

What scares me much more than the nightmares though, was the vertigo I experienced last night. I have grown used to being lightheaded and experiencing the all-too-familiar pre-syncope sensation but this dizziness was spinning, violent, uncontrollable. Normally when I feel a little dizzy it is relieved by laying down flat. This vertigo was not. Something similar happened to me when I awakened in the early morning a year or so ago but the spinning didn't last this long. I can't help but wonder what caused it considering my blood pressure and heart rate appeared to be normal even while dizzy according to my accurate automatic monitor. My gut instinct tells me this episode wasn't blood pressure related. When it happened to me once before a physical therapist told me there were these inner ear crystals inside everyone's head that sometimes detach and cause positional vertigo. There is no definitive test for these elusive ear crystals and no real treatment except to try to reposition the crystals back into a normal place to alleviate the vertigo. There are also other more serious causes like Meniere's Disease which is apparently quite rare. Then again, so is ehlers-danlos syndrome and POTS, both of which I am afflicted with, so I never know what other rare illness might strike.

My theory at this point, although not incredibly scientific, is that I may have somehow cut off the circulation in my own neck during my sleep because of the odd position that I woke up in and the fact that the ultra-firm pillow was uncomfortably pressed into my neck. I have been vertigo-free the rest of the day once it subsided. I have also remained upright all day because I am scared to get it again. Every time a strange and debilitating new symptom like this occurs I live in fear that it will return again, or worse, that it may never go away. That's what I was thinking this morning as I had to lay there perfectly still in silence with my eyes shut held hostage by the violent vertigo.

Hopefully this attack was random and will never happen again. My sleep had been getting so much easier lately and I finally felt like I had a handle on it until now. Now I am scared to go to bed for fear of waking up to another vertigo attack. I really hope it is not somehow related to my ears. If I lose my hearing and balance I will not be a happy camper. All I can think on days like these is wow, I must have been quite a terrible person in a past life to deserve all this! Maybe I'm being a tad dramatic here but really. Can't I be done dealing with new medical conditions for now? The two majorly debilitating ones I have already are quite enough to manage.

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