Resolutions, Revisions, and Regrets

As we approach yet another new year, it is a time to reflect upon the last 365 days of life and how they were spent. This year I experienced a lot of changes in mine, both positive and negative. Overall, it was a good year mainly because I finally found a job I am both capable of doing and enjoying. However, I am still struggling with the fact that I am not where I want to be health-wise after suffering through three years of POTS. Luckily I discovered that my symptoms respond positively to weight-bearing exercise, so I am going to make that more of a priority in the coming year. Another resolution of mine is to phase out all chemical-based cosmetics, and personal and household products. I do not like to waste things, so I am simply using up or giving away the old, and when I replace a product I will replace it with something green and chemical-free. I hope that this shift in products will be reflected in my health. I also intend to gradually eat better and buy organics whenever possible. That's about it for my resolutions this time. I'm keeping it simple. I used to be a fan of elaborate lists and detailed action plans, but since work has been consuming so much of my time lately, I figure it's best to have a few basic, realistic resolutions in mind that I can actually stick to.

After recently finishing the first two seasons of Being Erica (in my opinion it's one of the best shows on television), I realized that I too, have a long list full of regrets--19 of them to be precise. For those of you who haven't seen the show, it's the story of a woman in her early thirties who just can't seem to get her life together, although she is bright, well-educated and has a lot going for her. She visits a "therapist" who engages in unconventional therapy sessions with her where he enables her to travel back in time to relive her biggest regrets. The show is what I would classify as a dramedy: Erica is a highly relatable character and the flashback scenes to her teen and college years are generally very funny. But the show also deals with some serious subjects and subliminally encourages viewers to evaluate their own lives and regrets.

Looking over my own list of regrets I couldn't help but wonder if reliving a few of them differently may have prevented me from getting sick. For example, if I would have not cancelled my wisdom teeth surgery out of fear my freshman year of college, maybe I wouldn't have developed the infection and cyst that resulted in an emergency surgery senior year. Or, perhaps I was destined to get sick anyway and having the surgery sooner would have only meant that I got sick even earlier in life (which definitely would have been worse considering I probably wouldn't have finished college if I had developed POTS as a freshman). On my list of regrets are some silly, some serious, yet living any one of them differently may have altered the course of my life significantly. My question for you, dear readers, is if you could travel back in time to relive any regret, what would it be and why? How would you do things differently and how would it alter your life today? Just something to ponder as the new year approaches. Perhaps the most important resolution I have for the upcoming year is to live a life free of regrets.

Happy Holidays!!!

Whether you celebrate Christmas, Hanukkah, New Years, or something else, this time of year can be especially tiring. Remember to stay well hydrated and load up on the salty snacks at all those holiday gatherings. Dressing in layers also helps--especially at other people's homes where it may be warmer or colder than you're accustomed to--so you can add or remove articles of clothing as needed depending on your body's personal thermostat. Also don't be embarrassed to sit down and if possible elevate your feet or sit criss-cross-applesauce style on the floor. That helps me a lot. So does looking at pretty Christmas decorations. Here is my tree and decor for your viewing pleasure. Merry Christmas to all, and to all a good night!

Pets for POTS

Lately I have been thinking it might be nice to have a furry companion around to take for brief walks, keep me company, and train to do tricks. I have researched several breeds and currently have my sights set on a cute Shiba Inu puppy like the one pictured above. Ideally I want a dog small enough to pick up with a good temperament that doesn't bark much. Shiba Inus are described as a very fastidious breed, meaning they like to stay clean and are easily housebroken, which is also a major bonus for me.

I know a lot of dysautonomia patients have really benefited from having pets in the home. Not just for the company, but also because animals are intuitive and often capable of acting in a service capacity to alert their owner when something's wrong. Check out this video of one dysautonomia patient's fainting spells caught on tape:

Although he doesn't alert her in quite enough time, Sarah's dog Walburg clearly recognizes that his owner is about to faint. Another obvious advantage of having a larger dog by your side is that if you happen to pass out in a public place, people probably won't mess with you while you're down.

Although I am not looking for a service dog, I would expect my future dog to be in tune to how I'm feeling. Even dogs that I don't know very well seem to instinctively seek me out and come sit on my lap when I'm not feeling well. There could be ten other people sitting around in the room and if there are dogs around, they will always come sit by me. To be honest it freaks me out a little bit. Dogs did not always flock to me like this. But since developing POTS I've noticed that animals have taken a liking to me.

So maybe that's a sign that it's time to get a pet. At this point it would be a whole lot easier than dealing with a needy boyfriend. Most of my friends are in the midst of getting married, getting a house, getting kids, and here I am contemplating getting a dog. For most of my old friends, getting a dog isn't even a big enough milestone to make it onto their Facebook newsfeed. They have bigger and better things going on in their lives. But to me, getting a dog is a big deal and an even bigger decision. I need to be sure I can adequately care for an animal and provide them with enough exercise to stay healthy. I need to be 100% sure I can give them the care they deserve or it would be rather selfish of me to get one.

Then again, getting a dog may help me feel better in many ways. Maybe it's the power of unconditional love or maybe it's just pure coincidence, but pet owners are said to have better health overall and recover more quickly from surgeries and injuries than non pet owners. Resilience is something all POTS patients could definitely use an extra dose of.

In January, a litter of Shiba Inu puppies from a local breeder are coming to town. So I have a little more time to mull this decision over. Any feedback from pet owners and non pet owners alike would be much appreciated.

Dancing Alone

Have you ever put up with a less-than-savory situation simply to avoid being alone? Especially to avoid being alone with a chronic illness? Sometimes I look back on my last relationship and have to wonder if I was just plain lonely or if I had simply lost my marbles as a result of POTS. Guess I can blame that toxic relationship on a chronic impairment of blood flow to my brain.

I started my journey with POTS as a single senior in college. After a few months of being sick and still without a diagnosis, I finally gave in and went out with a very persistent guy from work. The first date went fine, and to my surprise temporarily took my mind off my tachycardia for a change. Before I knew it, a couple dates had turned into a relationship. Truth be told I wasn't ever really sure I wanted a relationship or could even handle one on top of being sick. I knew my health wasn't up to par and it was hard for me to have a "normal" life where one can spontaneously go out on exciting dates all the time. But I informed him of my health problems up front and for awhile it didn't seem to be an issue. Well, at least not for him. I would push myself to the brink of exhaustion simply to appear normal.

He knew I couldn't do anything too athletic; although we did play tennis a couple times and he complained when I had to take quick breaks. Not the most patient guy. And dealing with POTS takes patience. Heck, I was proud of myself just for being able to play tennis at all (keep in mind this was during my pre-compression stocking days, so playing tennis together in the heat really was quite a feat). However, we went on this way for quite awhile. Him wanting to do things, pushing me to do more things, and me being pleasantly surprised by how much I was able to do (sometimes). But there were times when pushing myself only made me that much sicker.

I went through a couple periods where my POTS worsened, and during those times he complained more and more, and I felt like more and more of a burden and a hindrance to him. He suffered from untreated attention deficit disorder (his doctor thought possible bi-polar disorder as well) and liked to remain active. He did not like taking the meds because he said they made his heart race. I know the feeling, so I tried to be patient when he abandoned me to play poker on a regular basis. That was his way of staying active, he insisted. After all, "poker is a sport. They show it on ESPN." Really, I think it was more of a way for him to self-medicate than to stay active.

Although I had explained my illness to him in great detail and he listened and asked questions, not to mention he had seen me at my worst several times, he never fully understood it. On numerous occasions he tried to compare his ravaging gambling addiction to my having POTS. Of course, that comparison angered me greatly considering POTS is a physiological problem while gambling is a psychological one. POTS and gambling are like apples and oranges as far as I'm concerned. No actually, more like apples and airplanes. They are so different the two illnesses shouldn't even be compared...yes I do agree with the notion that addiction is an illness, but at least it's one that there is actually tangible treatment available for. I am sure his ridiculous comparison was either a cop-out and a way to justify spending days on end at the casino, or a subliminal cry for help since it suggests that he had lost control of his addiction just as I had lost control of my own body. Either way, his habit contributed to my neglect, my stress load, my worries, and ultimately, the decline of our relationship. The sad thing is, in the end his addiction and his anger problem were what tore us apart. Not my faulty autonomic nervous system like I had once worried. Although my condition was not conducive to living in an unhealthy relationship, someday I believe I could benefit from a healthy one. But for now, I am content to be dancing alone. To get to know myself again and be comfortable without anyone but myself.

For more information on dating with POTS, please check out my friend Shannon's video called 'Dating With A Chronic Illness:' http://www.youtube.com/watch?v=OTJ3x9erVBU

Winter Update

The weather outside is frightful, my Christmas decorations are up, and so are my spirits. Although I am battling a very nasty head cold at the moment, I do have a few things to celebrate.

I started at my new job a few weeks ago and so far it is going quite well. For those of you who have been wondering, I am working full time (40 hours) and telecommuting, which I would highly recommend. Working from home enables me to put my feet up while working and work from my laptop in bed if need be. It is nice to have that kind of flexibility without having to worry about a commute. It took me nearly two whole years to find this job, but it well was worth the wait. My hope is that I can continue in this position for a long time. I am happy to report that so far I have gotten only positive feedback from my employer, and the work is interesting and engages my communication skills.

Last month I also finished my first articles for DINET's quarterly newsletter. I'm looking forward to seeing them published in the Fall Edition which should be online any day now. My usual indecisive self had a hard time choosing a topic, so I wrote two short articles instead: one on barometric pressure and one on being housebound during the holidays.

On another positive note, I managed to wrap all the Christmas packages with minimal frustration this year, and for once they actually look pretty (wrapping presents is not my forte). My pink tree is up and decorated to near perfection except for a strand of pink lights that is partially burnt out. I was pleasantly surprised to see that the Christmas episode of Glee featured a pink tree just like mine! (It was Brittany's, go figure.)

I think that's about it for now...just wanted to fill everyone in on some positive news for a change. Hoping the holidays go smoothly for everyone and that we all share in improved health and happiness this holiday season!

Jello-Legs and Other Strange Sensations

One symptom I never ever experienced before POTS is jello-legs. It is quite possibly the strangest sensation in the world. I'm sure there's probably a more technical term for it, but really jello-legs sums it up accurately. When an episode strikes, my legs go weak and feel like they could give out at any second. For me, a jello-leg attack is usually a sign of low potassium. My chest gets heavy and it's hard to breathe when this happens. The other day I had worked nearly 7 hours and got so absorbed in my work that somehow I had skipped dinner. Never a good idea. I literally collapse when my potassium starts to get low. However, I have successfully avoided the emergency room these last few episodes by downing the V8 at home. It usually does the trick and I feel remarkably better in about twenty minutes.

Another strange symptom I have experienced with POTS is a little black floating speck that seems to hang out in my left eye. It is not there all the time, but often, and it is more noticeable when there is a lot of light. Lately I have been contemplating if this should warrant a visit to the eye doctor. I just hate the thought of wasting my time and money on another possibly unnecessary appointment, but part of me thinks maybe I should just to rule out the possibility of something more serious. Lately I tend to chalk everything up to POTS and ignore potentially serious symptoms. It's easier that way. Self-diagnosis almost always saves a trip to the doctor's office.

I'm not sure if it's just the natural aging process or if this is also related to POTS, but the last year or so I have suffered from dry skin, especially on my legs and arms. Of course, this malady is a minor one considering it's fixable with lotion, it's just that my skin never used to be like this. It troubles me almost as much as the handfuls of hair I seem to lose with each shower. I brought the hair loss up to my primary care doctor before and of course he takes one look at my head of thick curly hair and says that "shedding is completely normal and happens to humans periodically. It's not really a problem unless you can see scalp." But what I want to know is, how long should this shedding period last, when will it cease? Do I have to wait to be able to see scalp before it is actually considered a problem? In my book, by the time that happens it's too late to treat it.

Last on my strange symptom list: I do not have the same voracious appetite I used to. I used to be able to consume ridiculously large amounts of food compared to the diminutive size of my body. Lately though, small meals fill me up, and I don't even snack as much as I used to. This is actually quite alarming. I have had heartburn ever since I was a little kid but this is different. Like I actually don't have much room for food anymore. And I love food. It's one of life's greatest and simplest pleasures.

This week's post was kind of a downer, so I thought a song might perk it up a bit. For some reason when I think of jello-legs I think of this R&B ballad, a throwback to the early '90s. Too bad its just low potassium and not love that makes me weak in the knees...

Perfect Products for the POTS Patient!

Birthday and Christmas gifts have taken on a whole new meaning for me since getting sick. I am now all about the practical, the useful, the helpful. With the holiday season swiftly approaching, what better way to prepare for Black Friday bargains than to compile a list of products that make our lives easier. Here are a few of my favorite essentials, perfect presents for any potsy's wish list in every price range.

Stocking Stuffers:

Wrist Blood Pressure Cuff, $20-$40

Head Massager, $5-$10

Snack-Size Almond Containers, $2-$5

Epsom Salts, look for lavender scent for a spa-like experience, $2-$5

Satin Eye Mask, $5

Hot Water Bottle, $5-$10

Ice Packs, $5-$15

Battery-Operated Heated, Vibrating Slippers $20

Pedometer, $5-$15

Reusable Water Bottle, $5-$20

Splurges:

Bubbling Foot Spa, $20-$40

Travel Humidifier, $50

Polar Heart Rate Watch, $50-$200

Hydration Alert Monitor, $20-$80

Large Purse of Choice, $40-$500

Recumbent Exercise Bicycle $150-$450

Laptop of Choice, $350-$2500

Exercise: Friend or Foe?

If you asked me whether or not I would be exercising after I first got sick, the answer would have definitely been no. I could barely walk from room to room without getting weak and winded. Chronic tachycardia will have that effect on a person. I couldn't take the stairs on my college campus, instead I had to rely on elevators and even then it was a stretch just to get myself from class to class. This was all before my POTS diagnosis of course.

My EP kept urging me to join a gym and just start slowly on bikes and weights. For a long time, I ignored his advice. I then stumbled upon a blog about a research study in Texas on exercise and the POTS patient. I was intrigued. I immediately contacted the blogger and the research associates but never heard back, so I am unclear what Dr. Levine's specific exercise protocol is, but the blog mentions recumbent bicycling, swimming, rowing machines and weights. So, I did some research, and started exercising at a nearby rehab facility. Since Dr. Levine's specific protocol was not revealed online, the owner designed an exercise regime specific to my needs. He performed an EKG, blood pressure readings, and a test called the BioZ that measures cardiac output, stroke volume, and things of that nature. He said the always reassuring, "I've never seen anything quite like this before," in reference to my off-the-charts BioZ test results. He then performed the BioZ test again five minutes after exercise and my results were encouraging: everything had come back into a normal range. He concluded that I need to exercise in order to keep my circulation going. And I believe he is right. However, in the beginning, I couldn't tolerate any exercise. But now that I have gotten my condition somewhat under control through salt, fluids, and the occasional beta blocker, I am able to do certain exercises and movement really does make me feel better.

If I don't exercise for a couple days, I start to notice the effects on my body. When I am diligent about my exercise routine, I am much less lightheaded and suffer fewer woozy spells. I purchased a recumbent bike to use at home and ride anywhere between 5 and 10 miles every other day at a low to moderate resistance setting. If I ride it a bit each day, I tend to feel better. However I think it's important to take a day off the bike here and there to let my muscles recover. I try to do light weights with high reps 2 to 4 times a week for about twenty minutes at a time as well. I do some leg work, abs, back, and shoulders. I have definitely noticed an improvement in my muscle tone and I am a bit stronger overall. An occasional pilates workout provides a nice diversion from my standard routine and if I am experiencing worse than normal brainfog I turn to yoga, as it enhances bloodflow to the brain because of all the inversions. Lately I have not been devoting as much time to exercise as I should be, and I can feel it. My woozy spells are indeed motivation to get back to the gym.

As with any exercise regime, please consult your doctor before beginning. Exercise can be a positive experience that improves circulation, muscle tone, and creates natural mood-boosting endorphins. Take it slow, if exercise causes you any abnormal or unbearable pain or discomfort, stop and revise your regime. Don't feel pressure to exercise for hours per day. Sometimes just minutes will do the trick; some exercise is always better than none at all. My best advice is to start all exercise in the recumbent position, doing leg lifts on the ground or from bed if that is all you can tolerate. Don't push yourself too hard. Monitor your heart rate and blood pressure throughout, at least in the beginning. Your stamina should increase over time. Be patient with your body, and most importantly, listen to it. Do not exercise to the point of exhaustion. Start with brief bursts of exercise and wait and see how your body responds the next day. Over time you may experience a noticeable improvement in your symptoms as I have. Exercise has quickly become one of my best friends.

The Shrink: To See or Not to See?

We all know that dysautonomia is a very real medical condition that causes debilitating physical symptoms. The numbers don't lie. A resting heart rate of over 120 beats per minute is rarely ever induced by anxiety, but rather a sign that something has most certainly gone awry in the body. Any reasonable doctor knows that.

It was beyond frustrating over three years ago when my old PCP, an airbrush-tanned and airheadish woman who didn't even attempt to listen to my heart with a stethoscope, wrote me a prescription for Zoloft, told me almost all young women my age suffer from severe stress and anxiety, and sent me on my way. It was even more frustrating when the Zoloft aggravated my cardiac symptoms and made sleep even more impossible to achieve for the week that I took it. After informing her that I would not be taking the Zoloft because I did not think I needed it, she finally humored me and listened to my heart with a stethoscope, and then sent me promptly to a cardiologist. At least she had sense enough to do that or I may have very well died under her care. Unfortunately, the aforementioned situation is all too familiar for POTS patients. We have all had to actively convince doctors that there is something real wrong with us. Thankfully I didn't have to wait too long to find a doctor who took my symptoms seriously. Nonetheless, before the official diagnosis, and even now, I still have selected family members telling me I need to get some "coping skills." Of course that angers me greatly on the inside considering I don't talk about my condition much at all with family because I don't want to be perceived as a complainer. So for the most part, I keep my struggles, thoughts and fears to myself and am guarded around certain relatives in particular. This blog has become my outlet for open sharing. And so has the online POTS community. I have met so many amazing and kind people afflicted with this strange and awful illness, and they have been my biggest and greatest support system. Pretty much the only way I know how to cope is to share with people who care.

On that note, I considered sharing my story with a total stranger (aka a shrink) for therapeutic purposes. As a communication major in college, one thing I learned about myself is that I scored quite high on the self-disclosiveness scale. I typically don't mind telling total strangers my life story. Getting sick at a young age has made me even more open in many ways. Being proper, guarded and reserved requires entirely too much effort on most days, so I am usually an open book. It's just easier that way. For some reason though, I still hesitated to visit a psychologist. Primarily because I didn't need another person just to listen to me ramble, quite frankly, I needed someone who would be willing to dispense advice and provide me with some tangible ways in which to cope with chronic illness.

I conducted some careful research and found a psychologist who I believe is my perfect match. She is not just an ordinary psychologist. She specializes in people dealing with chronic illness. Although she had never heard of POTS, she asked me all about it, had looked it up by our second appointment, and understood that it has many similar symptoms to those of Chronic Fatigue Syndrome. She sees chronic fatigue and epilepsy patients most commonly. I was relieved to hear that she had seen patients with neurological conditions before. Her demeanor is very friendly and non-judgmental. She listens well. Her office is comfortable and inviting and she doesn't mind if I lay flat on the floor during our sessions if need be. Most importantly, she also recommends practical coping tactics. I will relay a recent difficult event or setback to her, and she will respond with ways in which I could choose to feel about it, or how to reframe certain negative situations into positives. For me, this is a helpful tactic, since POTS has seemingly put a damper on my once optimistic personality. She also reminds me about practicing "pacing" (basically her version of The Spoon Theory) and not feeling guilty about it. Pacing is something that I am hoping we will focus more on in future sessions. She seems to have some practical techniques when it comes to things like scheduling events or telling people "no" in tactful ways. These are the concepts I have needed to refine for a long time. I look forward to continuing my sessions and hope to gain the coping skills and life skills I need in order to live happily and productively with POTS.

So, my honest opinion is, anyone considering seeing a shrink should definitely do so. Worst case scenario, you have wasted an hour of time and will never return. Best case, you will find someone who understands your predicament and can provide objective and honest advice on how to cope with whatever life throws your way. If nothing else, the experience should provide you with some validation that you're not actually certifiably crazy. According to my psychologist, the emotions I'm experiencing are a normal and healthy response to dealing with chronic illness and she does not think I need psychiatric medication of any kind. It is refreshing and comforting to know that at least there's someone out there who recognizes that this condition is not all in our heads, as so many of us have been told repeatedly. Ignore the stereotypes associated with seeing a psychologist or psychiatrist. It does not imply insanity. All it means is that battling a chronic illness will even make the sanest individuals a little crazy. Sometimes we all need a little help in that department.

The Quest for the Perfect Compression Stockings!

I have been wearing compression stockings religiously for the past year and I can't live without them. My grandma gave me my first pair that she had ordered online and that pair has been absolutely wonderful. They are knee-high, toeless, beige and unattractive. But they do the trick like no others I have tried. The problem is, she didn't remember what kind they were, and I stupidly threw away the box they came in without thinking twice about it. So for the last year I have been faithfully washing and wearing the same pair nearly everyday as I have searched, purchased, and tried about twenty different pairs, and every time I have been disappointed with the results. I have tried everything from Jobst, (which is supposed to be the best) to the no-name pairs online and failed to find any like the pair from my grandma. Luckily, the last time I saw her, she let me look at her stash that she still had in boxes - and bingo! I found a pair with the identical weight, texture and feel of the ones I have been wearing! They are called Jobst Relief compression stockings. There is a HUGE difference between the Jobst Relief line and the rest of their stockings. Although their other stockings might be slightly more attractive, the Relief ones work the best for combating lightheadedness and cold feet. I typically wear them under jeans or pants anyway so it's no big deal. They are available in black or beige, toeless or regular, knee high, thigh high and waist high. They are a bit pricey like all compression stockings are, but if your insurance covers them, then stock up. If not, I would still highly recommend investing in at least one pair. They don't just minimize lightheadedness and fainting, they also help with leg pain, fatigue, and circulation.

Yesterday my neighbor appeared at my doorstep visibly frightened and ill. She is a nice lady living with diabetes and bad neuropathy in her feet and was too weak and ill to go pick up her medications. After delivering her pills, I asked her if she had ever tried compression stockings. She hadn't but said that she had been thinking about trying them. I realize I am not a doctor but I recognized this woman's desperation and fear. She was visibly ill and looked like she was about to pass out. And I had to wonder if the lightheadedness she experienced that afternoon was a blood sugar issue or a case of orthostatic intolerance. Either way, I figured I should give her a pair of compression stockings to try. I ran home to get them and she has not taken them off since I gave them to her. Today she reported that last night was the first night in months that she had not experienced any foot or leg pain. She is now going to talk to her doctor about a prescription for them since they provided such immediate relief. It is amazing how often an old-fashioned remedy can be so much more effective than a pill.

My First Time Driving a Motorized Shopping Cart

I am a bit of a stubborn person by nature. It took me a long time to admit that yes, at times I definitely need that handicapped parking sticker. And now that I have been using it, it has made life a little easier. The other night I was feeling very lightheaded and weak but decided to go on with my usual routine. Well, the only place that got me was sitting on the floor in the middle of a Lowes home improvement store.

Several of my friends have suggested that I use a motorized shopping cart on a bad day or when I'm in a large store. So, I finally gave in and tried one. And go figure, the first time out, I got a dud. It was not a smooth ride. Although I'm sure it only traveled all of about 5 miles per hour at most, it was very touchy and took me awhile to get the hang of driving it. Don't let my experience discourage you though, I'm sure they couldn't all be this difficult to navigate. The cart was stop, go, stop, go, stop, go and didn't turn very well. But aside from the technical issues, I had a much more pleasant shopping experience than usual. I was able to last much longer and didn't have a woozy spell once.

After the parking sticker incident, I was apprehensive about the way people would perceive me or the looks I would get for operating a motorized cart. But surprisingly, the shoppers and staff of Fred Meyer I met in the aisles were surprisingly friendly. I got a few looks, but not dirty ones. Nobody asked me why I was using a motorized cart, and nobody seemed to care. All in all it was a much better experience than I anticipated. There were only a few major drawbacks to using a motorized cart. The first was, I could not fit many items in the basket. So if I had a lot of heavy shopping to do, I would probably need someone else to come along and push a regular cart if I could not do it myself. The second thing is, if I were not physically able to stand that day, there are many items that I wouldn't have been able to reach from the cart. The last thing is, some of the aisles were a bit too narrow for the cart to clear so I found myself taking alternate routes a lot, which was a bit annoying.

If you have been contemplating trying a motorized shopping cart, I would highly recommend it. If you are still uncomfortable with the idea, try it in a store you don't ordinarily shop in. There is nothing to be ashamed of, but I understand that it can be exhausting to explain your predicament to people you see on a regular basis. Automatically people tend to assume that you've been injured because they just saw you walk in the store last week. If only dysautonomia were as simple as an injury that would heal, life would be much, much easier.

Combating Cold Feet

For some reason, possibly from years of torturing my feet in ballet, or possibly just another pesky symptom of dysautonomia, I suffer from icy cold, numb feet. A local neurologist I saw deemed it neuropathy, but he did not know why I had it. This is the same neurologist who told me that "autonomic dysfunction is so rare, you couldn't possibly have it." Needless to say I broke up with this neurologist and now my EP recommended I see someone else instead. One of the issues I am hoping a neurologist will adequately address is my feet. They are duds. They feel heavy and numb when I'm walking around and are nearly always cold and bluish even at times when they shouldn't be (after exercise, bundled in wool socks and Uggs, etc). It is bad enough that I have to wear compression stockings everyday, but now I am practically living in my Uggs too. This illness can really hinder a girl's sense of style. I miss my old clothes and dressing up, which only happens on rare occasions nowadays. As far as I know, there is no magic pill to cure cold feet. So I have developed a few drug-free remedies of my own that work for me at home. So if you suffer from cold feet too, listen up my friends.

The first is to purchase an old-fashioned hot water bottle from your local drugstore. They are about five dollars and last forever. I would recommend airing it out outside for a couple of days before the first use if you are sensitive to scents since the smell of a brand-new hot water bottle is akin to the inside of a tire shop. Fill it with the hottest water as you can get out of your tap. Then place it at the foot of your bed either on top of or beneath your feet. I sleep with mine nearly every night and it usually stays warm until the next morning, especially if you put a blanket on top of it. Many people also use electric heating pads and blankets, which also work fine, but I am not a fan because of the electrical currents running through them. According to my EP, electric blankets can actually alter your heart rhythm, so I don't use them anymore.

The second option, my personal favorite, is the foot massage. Of course the foot massage experience is more enjoyable if someone else does it for you, but if there's no one else around, DIY. You will get the same benefits of enhanced blood flow to the area and experience temporarily warmer feet.

My third recommendation is to soak your feet in warm water either with your favorite bubble bath or my personal favorite, epsom salts, which provide some pain relief and actually help facilitate sleep. Epsom salts are affordable, unscented, and are full of magnesium which is good for muscles and nerves.

My last suggestion is to wear wool socks and heavily insulated shoes, boots, or slippers like Uggs. This is the best option if you are out and about or travelling.

So that about covers combating cold feet in the literal sense, but lately I have been suffering from metaphoric cold feet as well. I am apprehensive about possibly re-entering the workforce, wondering if my body will hold up for eight hours a day, or even a couple hours a day. Of course my job search has been limited to desk jobs because standing is out of the question. No waitressing or cashiering jobs for me, which unfortunately seems to be about all that is available in my area. The other issue is, I need to find a job that is within a five minute radius (maximum) of my house. Kind of hard to do when I'm in a largely residential area and the major industry here is retail, which revolves around being able to stand for long periods and lift things. Not to mention, I am qualified for and capable of something different. I hold three bachelors degrees and have five years of work experience in my field. But because I am not able to drive much anymore, most of the jobs I once dreamed of pursuing are out of the question. I am so glad that I graduated on time and with honors, but really, my education hasn't made much difference in my life yet because POTS came along and ruined my shot at becoming a productive member of the workforce.

If I could travel back in time and do it all over again, I would have traveled the world and taken more risks while I was still healthy. Instead I spent my time studying, working, volunteering, and living up to other people's expectations of me. I never really stopped to consider what I wanted. I was so determined to be valedictorian and go to a prestigious university that I sacrificed a lot of fun along the way. That is why, on my good days now, the last thing I want to do is waste the day applying for low-paying jobs I am overqualified for. Instead I try to spend my time enjoying the good days, having whatever little fun I am able to. Life's too short to do anything else.

The big question for many of us is, how will we be able to support ourselves in the future if we are unable to work? This is something that troubles me greatly. I have always been a good money manager, but in order to manage it successfully, there has to be something coming in. Right now I am pursuing non-traditional avenues of income such as work-from-home positions and my own resume-writing business. I believe in order to meet my financial goals in life without working a conventional full-time job, I will have to secure multiple sources of income. I have not yet pursued disability benefits because I am not sure if I have worked enough years to qualify, and I am stubborn, and would really like to at least try working again before I finally resign myself to the fact that maybe I can't work. But who knows, with any luck my body will start cooperating and I will be able to work again. I miss working. A lot. I miss the feeling of accomplishing something big each day. Now the little feats are victories to me: a trip to the grocery store, a decent night's sleep, or a day with little pain. This is my new normal. And I am trying hard to redefine my own personal meaning of success. It is so hard not to compare myself to others who work full-time jobs and contribute positively to society, because that used to be me. I really hope that an employer will give me a chance soon, a chance to at least try working again and see how my body reacts and adapts. The prospect of working again gives me cold feet for sure. But the prospect of never working again gives me even colder feet. Any suggestions on how to squelch these negative, nervous feelings of mine would be greatly appreciated...

Making the Most of Massage

Ever since I was a little girl I have loved and lived off of foot massages. Back then, I had an excuse. I was on my feet all the time because of ballet, which wreaked havoc on my toes and ankles. But now, I am up on my feet much much less as a result of POTS, however my feet and legs need massage now more than ever.

Massage is a form of passive exercise that stimulates circulation and nerve endings. It is also relaxing and can be therapeutic after an injury. I tried massage therapy on my upper body after my car accident. I had a few decent experiences and a few awful ones that left me in agonizing pain days after the massage. My body did not like deep tissue massage at the time. Everything was too sensitive after the accident. For me, it was all about finding the right massage therapist. I have tried five different massage therapists over the last couple years and have finally found the right one. She focuses on my feet and legs but will work on my neck, shoulders, arms and back if they are sore. At first she focused too much on my upper body while I was laying there with uncomfortably icy feet. Then it occurred to me: this is my massage, I am in control. So I spoke up for myself and explained that I had poor circulation in my feet so could she please spend more time concentrating on my legs and feet. And she was happy to comply. Amazingly, my feet usually stay warm the rest of the day following a massage. I only wish the noticeably warmer feet lasted longer than one day. Or better yet, I wish I could have a professional foot massage everyday!

The best thing about massage is, you don't necessarily have to have a trained and licensed massage therapist at your feet to reap the positive benefits of massage, which may include:

• pain relief
• improved sleep
• reduced heart rate
• improved circulation
• reduced anxiety

In fact, most people can easily massage their own feet to improve circulation and reduce anxiety. I am making self-foot massage a mandatory part of my daily routine, just like brushing my teeth or hair. I encourage whoever is reading this to try it too!

Irony and Balance

In reference to my last entry on Type-A personalities being prone to POTS, isn't it ironic how people who once prided themselves on being in control can't even control their own bodies as a result of dysautonomia? How intellectually astute individuals develop an illness that causes brain fog and thus inhibits their ability to think clearly? How former dancers lose the feeling in their feet due to neuropathy? I am one of those people who have lost the things I once defined myself by. All these things ripped out from underneath me leave me feeling completely vulnerable and a little bit lost in life. Although I try my best not to, I find myself clinging to the past when I achieved things almost effortlessly. Now, each day can feel like an uphill struggle. In the words of my wise EP, "EVERYTHING is way out of whack." Well that's for sure. My body is incapable of functioning in the same capacity it was before and I just have to get used to it. It is a strange sensation to not feel my own feet, but I suppose something I will just have to live with. I used to be a perfectionist, so it is hard to accept not feeling my feet or the fact that there may not be a remedy for the problem. All these strange maladies caused by POTS leave me wondering: what's next? Dry eyes, numb feet, dizzy spells, tummy aches, sleepless nights--what's next?

Isn't it ironic how the things a person loves and uses to validate and define oneself can be snatched away in a heartbeat...I am immediately reminded of the Alanis hit from the '90's.

I suppose it's time to find a new niche for myself, one which accommodates these strange and incapacitating ailments...it is difficult to thrive in society when it is hard some days to even leave the house. The unpredictability of symptoms is perhaps the most frustrating aspect of dealing with chronic illness. I am tired of not being able to make plans with people, or plans to do anything for that matter because I don't want to be perceived as unreliable, flaky, or incompetent. Needless to say I am a bit worried that I won't be able to cut the mustard at a new job when I can barely remain conscious for a 45 minute job interview. My resume, cover letter and applications are immaculate and usually sufficient enough to land decent interviews, but after the interviews I am sure the employers wonder why I was so fidgety and couldn't sit still for long. Of course they are not aware of what's going on inside my body. And sometimes I wonder if maybe I am doing myself and a potential employer an injustice by even trying to work again when my symptoms can strike at anytime. I figure, I will never know if I can handle it unless I give it one more shot. I know I have some valuable skills to offer someone out there, but the conventional 9 to 5, be-on-time-and-ready-to-work thing doesn't sound too feasible for me at this point in time.

In the meantime, I will continue to ride my recumbent bike, strengthen my legs and arms on weights, do some pilates, get in the best shape possible, and hope that someday soon my body will regain the strength, stability and stamina to be a productive and successful employee somewhere. My life lacks any sense of real balance right now. I spend a disproportionate amount of time at appointments that just leave me exhausted and full of more unanswered questions. I am striving to achieve some tangible balance in my life right now. I am making it a goal to accomplish at least one significant task each day, even on the bad days, and even if it takes me all day to do so. In my downtime I will be continuing to work on my personal fitness, nutrition, and of course, sleep.

Are 'Type-A' Personalities Most Prone to POTS?

I have an A-Positive blood type, a reformed Type-A personality, and now, a case of POTS. Sound familiar? I find it interesting that a lot of the literature on POTS indicates that many sufferers were typically overachieving, Type-A personalities driven to succeed. Isn't it ironic that some of the most ambitious and intelligent young people are struck with this debilitating illness that inhibits the ability to achieve certain goals--specifically the career-oriented ones? Sure, we can still be successful and productive individuals, but many of us perhaps not in the same profession we had planned.

As a former television producer and host, I oftentimes struggled to remember my lines during my "stand-ups" and my delivery would get worse and worse the longer I stood there in front of the camera. This phenomenon happened to me quite frequently before my diagnosis. My cameraman jokingly alleged that he thought I was coming down with Alzheimer's Disease, and I'll admit for a long time I actually wondered if he was right. I was not only embarrassed by my poor delivery of lines, I was also secretly scared that I may have quite literally been losing my mind. One day it was too cold to shoot my intro outdoors, so we opted to film it inside instead where I happened to be sitting down, and that time, I nailed my intro on the first take. After that shoot, he insisted on filming everything while I was sitting. Interestingly, this was still before I even knew I had POTS. Turns out my cameraman was actually on to something. He had absolutely no medical knowledge whatsoever and yet for him it was plain to see that I did not perform well standing up.

I now recognize that was all just a case of bad brain fog and inadequate bloodflow to the brain; something that I struggle with on a daily basis whenever I attempt standing tasks. And I of course modify my actions appropriately. I try to do all my important decision-making while sitting with my feet elevated or laying down. I also try to perform all cerebral work (reading, writing, paying bills) while lounging around in bed. That is definitely not how I would have set out to accomplish my most important tasks in the past, but it is my new reality. If a rude stranger like the one who left the note on my car were to see how I go about accomplishing my daily tasks they would surely accuse me of being lazy because that is how it must look as I lounge around with poor posture, my feet awkwardly sprawled all over furniture. But I have discovered that in order to be as productive as I can, I need to listen to my body and pretty much do what it tells me to or I will pay the price later. So I do my work from the couch or even from bed if I want to maintain some semblance of intelligence.

Why is it that many POTS victims had/have Type-A personalities? Does operating on overdrive for so long render our autonomic nervous systems more susceptible to malfunctioning? Or does living in a state of chronic stress simply weaken our bodily defenses, thus inviting potent viruses and leaving us vulnerable to irreparable traumas? In my case, prior to POTS I was a healthy, involved-in-everything individual who thrived on stress to accomplish my goals. I suffered from severe menstrual cramps one day each month and dealt with the occasional cold or ear infection, but most of the time I was able to easily power through a minor illness and continue my full life with minimal interruption. Senior year of college I developed infected wisdom teeth and after their removal my body was never the same. The severe car accident I endured three weeks later didn't help my body's recovery process either. So a virus, a surgery, and a trauma all may have contributed to my POTS. Perhaps my body was already enduring too much stress as a busy, driven college student and it simply couldn't handle all the physical trauma suddenly being thrown its way in less than one month's time. In a sense, my system couldn't cope. It felt like my body was thrown into shock and it signaled me of its distress with a racing heart, extreme insomnia and overwhelming fatigue. I will always resent my former primary care doctor who didn't bother to listen to me or my heart and immediately wrote me a prescription for Zoloft. Had I remained under her care I may not even be alive today. Too many doctors rely on a generic "anxiety" or "depression" diagnosis without bothering to thoroughly evaluate a patient's symptoms before dispensing pills.

This week, I am going to visit her office and leave an article for her, along with a polite handwritten note explaining that she may have been too quick to diagnose me with anxiety three years ago. I would also love to take her a copy of DINET's informative "Changes" documentary but unfortunately I doubt she would take the time to watch it. So I am going to include my favorite article on POTS instead. It provides a comprehensive overview of the syndrome without going into lengthy detail, so I am hoping she will take the time to at least glance through it.

http://www.ipej.org/0602/raj.htm

Dealing with Dysautonomia at the Dentist

As I sit here dreading my upcoming dentist appointment tomorrow afternoon, I wanted to remind myself of a few important strategies I can use to cope in the dental chair. Luckily, I have a very gentle and compassionate dentist (with very small hands) who lets me rest my jaw when needed. She also maintains a very clean and comfortable office atmosphere with televisions on the ceiling, headphones, and sunglasses: all things which serve to make the patient comfortable and ease potential anxiety. Most importantly, she knows I have a severe epinephrine sensitivity and gives me a special pain injection without epinephrine. She is also willing to work around my TMJ issues by giving me regular breaks to rest my jaw.

As I child I guess you could say I developed a severe phobia of dentists. I absolutely detested my childhood dentist and began to associate every dental appointment with pain and anxiety. Now that I'm a rational adult, things are a bit better. I know that my dentist is not out to get me and that regular treatment can help prevent pain and complications in the future. Going to the dentist the last couple years has become a lot more complicated though, partially due to my TMJ, and partially due to my case of POTS. Here are a few important things that have helped me get through recent dental appointments:

-No epinephrine! Epinephrine is an additive commonly found in pain injections like Novocaine. It can induce tachycardia in normal individuals. It actually makes me involuntarily shake and develop hives (an allergic reaction). Even if you are not allergic, ask your dentist for an epinephrine-free pain injection. They are just as effective without the potential side effects. Also, be aware of any other potential allergies and sensitivities including latex, and if you have any kind of allergy, inform your dentist or hygienist prior to treatment.

-Hydrate yourself long before your appointment (Gatorade is a great option). Bring a water bottle inside with you but be sure to ask when it is okay to take a drink.

-Eat a protein-rich snack right before the appointment. Bring something soft to eat afterwards like a pudding cup in case you get low blood sugar issues.

-Speak up for yourself. If you're uncomfortable or in unbearable pain, don't be afraid to tell your dentist. They want to keep the patient as comfortable and relaxed as possible. I opt to remain calm without the use of meds or laughing gas because of the side effects. Something as simple as listening to music or having a comfy blanket may be just enough to make your appointment more bearable.

-Close your eyes. Don't look at the giant needles as they enter your mouth. Keeping your eyes closed also helps keep that pesky bright light out of your eyes. If you want to keep them open, be sure to wear full-coverage sunglasses.

-Ask your dentist to explain the steps of the procedure to you as they go. Most good dentists will do this naturally. They will talk you through the procedure and alert you when you may feel extra pain or pressure so it doesn't come as a surprise.

-Ask your dentist if you should take any special care or precautions after the procedure. Sometimes patients will be advised to take ibuprofen or Tylenol for a day or two to minimize pain and discomfort. Others, especially those with heart conditions like MVP, will often be prescribed antibiotics to take as a precaution to avoid infection. Sometimes an ice pack or muscle relaxant will even be prescribed, especially for patients with TMJ or related conditions.

-Several shorter appointments are always easier for your body to handle than one or two long appointments. Pay careful attention to your scheduling needs. It is best for POTS patients to avoid early morning appointments at all costs, late afternoon or early evening is usually best. If there is one secret I have learned about dental offices it's that the late afternoon appointments are only going to last a couple hours at most because the offices always close down at a set time each day. Find out when the office closes and schedule your appointment two to three hours before closing time.

That is about it for my extensive knowledge of the dental world. Tomorrow I am going to try something new and ask my dentist if she will lay my head a little further back and keep my legs elevated a little higher in the air in an attempt to avoid woozy spells. My guess is that should help minimize my POTS symptoms a little more. Wish me luck!

I gleaned some more helpful information from an article on POTS and dental treatment which I will be printing out to share with my dentist:

http://www.dynakids.org/Documents/Brooks_April_2006_JADA.pdf.

Response to Anonymous Note

A few evenings ago after buying a wedding present and returning to my car fifteen minutes later, I was greeted by a note on my windshield saying, "NOT HANDICAPPED, JUST LAZY." Thanks ignorant person for making my day a little worse. People like that perpetuate the injustice surrounding invisible illnesses; they don't believe what they can't see.

I was so shocked, appalled and upset by this note that I posted the aforementioned incident on my Facebook page to vent and was simultaneously surprised and saddened by the amount of responses stating that the same thing has happened to many of us before. I decided that instead of wasting any more precious energy being angered by this ignorant individual, I would do something constructive and write him or her an open letter explaining my situation and why it is important to think twice before acting on a selfish impulse.

Dear Anonymous Note Writer,

Please, if you are going to invest the time and energy to write me a note and place it on my car in the pouring rain, at least have the guts to sign it. Or better yet, confront me in person. Even a first name would have been nice so that I could assign you a hypothetical identity, not that it would have even mattered because I am not as inclined to make snap judgments about people as you apparently are. And if you would have kindly provided your e-mail or phone number, I would have surely contacted you to defend myself and all the others suffering from invisible illnesses who have been wrongly accused of cheating the system.

The truth is, people like you represent all that is wrong with the world today. You judge a book by its cover without thinking twice about it. You must have seen me park in a handicapped parking stall with my sticker hanging in the windshield and walk into Bed Bath & Beyond without any apparent signs of physical distress or discomfort. I can even understand the thoughts that may have been running silently through your mind: Is that girl really disabled? She looks fine, how did she get that sticker? I wonder what is wrong with her, if anything at all? She is not walking with a limp or using a wheelchair...

Prior to getting struck with an invisible illness out of the blue, I may have been asking the same questions myself if I saw a young, seemingly able-bodied individual walk effortlessly into a store after parking in a handicapped stall. The difference is, I would have never had the audacity to confront them about it, because I like to assume that all people are inherently good and decent until proven otherwise. There is no need to attack or confront someone simply for using a handicapped parking sticker that they may very well need. I am sure there is the occasional incidence of a handicapped parking sticker being stolen from an elderly person, but I highly doubt that it happens too often. The fact is, most people who have a current handicapped parking sticker actually do need one. And it is not up to anyone other than their doctor to decide whether or not they need one.

What compelled you to write that note to me? Did it make you feel better about yourself to impose judgment on someone else? What did you hope to accomplish by leaving it anonymously? Were you waiting to see my reaction? To see if I would laugh, cry, or yell about it? Well, as I'm sure you probably witnessed from afar, I cried about it. I hope you are happy. You didn't accomplish much except for making a young, chronically ill girl cry and question her place in the world. It is hard enough to have an invisible illness, but even harder to have one at such a young age. Although I may have looked fine to you on the outside, on the inside my body is fighting an internal battle I'm sure you probably can't even begin to fathom.

By the time I got back to my car a mere fifteen minutes later, I was lightheaded and weak with a racing heart, and had to put my feet up on the dashboard so that the blood pooling in my legs would slowly circulate back upwards to my heart and brain. Once I became oriented and alert again, I noticed the note on my windshield and got out to retrieve it. My heart sank when I read, "NOT HANDICAPPED, JUST LAZY." Talk about adding insult to injury. After enjoying the first somewhat "normal" day I'd had in a long time, you, a complete stranger to me, try to bring me down by making an unfair and untrue assumption about me. I am anything but "lazy." Before getting sick, I could do it all. I was valedictorian, a first-generation college graduate, a television producer and a talk show host. Now, I exercise every single day just to maintain circulation in my legs. Not the typical characteristics of a "lazy" person, are they? Do you exercise every day? If you don't, does that make it acceptable for me to call you "lazy"? It certainly doesn't, because it is not my place to judge you. I do not know your situation in life. I resent being belittled by someone who knows NOTHING about me or my current circumstance. I can only hope that my illness is just temporary, but since you saw my parking sticker, you surely noticed that it is a permanent handicapped parking sticker because no one, including my doctors, know if this cruel condition will ever go away. This condition, should you care or bother to educate yourself about it, is called POTS, a form of dysautonomia. In a nutshell, it means my body's systems are constantly fighting to be normal and I struggle with debilitating symptoms on a daily basis. My electrophysiologist (heart doctor) issued me the sticker to help give me some independence back. Independence that you are lucky to have.

I am sorry if my young age and appearance offended you. You should be ashamed of yourself for judging a book by its cover and maybe next time you will think twice before making rash assumptions about others. And please, don't bother picking on people with handicapped parking stickers ever again. My best guess is, you don't know the half of what it's like to walk around in our shoes.

Sincerely,

Ms. DefyGravity

defy.gravity321@gmail.com