Update

A few weeks ago, I saw my electrophysiologist, the brave and patient man (in my book that makes him a hero) who has taken me on as his first real POTS patient. Although I get along well with this doctor, for some reason I typically end up in tears in his office. Every time he sees me he must be anticipating the waterworks since he always has a fresh Kleenex box in hand upon entering the room. Sure, there have been a few extreme tachycardic episodes which he witnessed with his own eyes, the simultaneous sense of disappointment and relief I experienced upon finally hearing a legitimate diagnosis, and even the grieving openly to him about the emotional aspects of being sick and the wonderfully active and ambitious life I left behind. Those discussions all engendered tears easily. But at this last visit (my first visit with him in over 9 months!) for the first time I did not cry. And I was proud of myself. He could tell I was making progress. It's not like he is my shrink or anything, nor is it his job to be, but he is sensitive to the fact that I am dealing with something difficult and chronic with no quick fix or simple cure. His empathy is refreshing considering most doctors I have encountered don't even recognize the terms POTS or dysautonomia.

I ran through a checklist of questions, among which were routine items like a compression stocking prescription, a refill on my propanolol (taken as needed), and an update on my blood pressure readings. The first and most important item at the top of my list was to talk to him about getting a handicapped parking sticker, something I have been vehemently resisting until just recently. My mom convinced me to at least ask about it to see if it was a viable possibility for me, and of course she encouraged me to get one. My electrophysiologist agreed with her wholeheartedly, filled out the paperwork, and I had my sticker that afternoon. I'll admit, it has made life a little easier.

Whenever I attempt to go to the grocery store or even run a simple errand, I am often exhausted before the time I ever get inside. I realize that my body is operating like an hourglass, the blood is slowly running downward and I only have a limited amount of time to complete errands before all the blood will have left my brain and I will collapse in public. So needless to say I make lists and plan my strategies for errands very carefully so I can complete them as quickly as possible to avoid a potentially embarrassing incident in public. Perhaps it is because I passed out at my own college graduation, what is supposed to be one of the most important and defining moments in any young person's life, but I have an extreme fear of passing out in public again although it has only happened to me that one time. I think my fear of publicly passing out is mainly because I know someone would call 911, I would be forced to endure yet another harrowing and uncomfortable ambulance ride, and end up getting needlessly poked and prodded in the ER only for them to tell me they have never heard of POTS and to be sure to follow up with my doctor. Aside from getting a saline IV which usually makes me feel a little better temporarily, there are few perks to an Emergency Room trip. Usually the amount of blood they take for the tests is enough to drain me (literally) and leave me feeling more weak and symptomatic than I was in the first place.

And why they never let anyone eat anything in the emergency room is beyond me. I know I will not be needing an immediate surgery, and I also know that my body doesn't last much longer than about two hours without food. It was always a bit difficult to sneak bites of fast food while laying there and I always felt slightly guilty when a doctor or nurse asked what the smell was. But I know that not eating while I waited for hours on end for a response as to whether I could eat or not would only result in me feeling much, much worse. So I'll admit it, I have eaten several cheeseburgers in emergency rooms while waiting on test results. Admitting that feels like I am confessing some unspeakable sin, but at the same time, I'm not sorry, because my body was probably telling me to eat the cheeseburgers for a reason. Sneaking those cheeseburgers was about the worst thing I have done in my life thus far. But feeling that sick and that starving, at the time I didn't care that I was breaking the rules, and truly felt as if I might die if I didn't eat at that very moment.

Luckily I have managed to stay clear of emergency rooms all year, and it feels good. After having a recent string of bad days down in bed, I realize I am not out of the woods with this whole POTS saga yet. But the good news is I am down in bed much less than I used to be, and am much better than I was in the beginning. Maybe it is because I have discovered what triggers my symptoms, and I do my best to avoid those things (standing, extreme heat, going for too long without food or water). Or maybe it is because my autonomic nervous system is slowly recovering and normalizing. I can only hope that my progress is due to the latter.

In the meantime, it is my new found attitude that I am going to do everything in my power to lead a more 'normal' life. If that means using a handicapped parking sticker to achieve a better quality of life, then that is what I am going to do. If I am feeling faint in public, I am going to sit or lay down on the floor. I don't care if it isn't socially acceptable. I refuse to be embarrassed about it. I refuse to let people's stares bother me anymore. My next step, although I am stubborn and hate to admit that that I need help and can't always stand on my own two feet, is to take a trip to the grocery store and use a handicapped cart so I can actually enjoy my shopping experience for the first time in a few years. I may attach a sign to the front of the cart that says, "I faint." I get tired of explaining POTS to people who simply don't get it.

I think I have been in denial about being different for a long time. It's like I don't want to admit to anyone, even myself, that my body cannot do the things it used to. My body harshly reminded me this past weekend when I used my handicapped parking sticker to go to a classic car show. Because I wanted to go, and I thought I could handle it. And I would have never known if I didn't at least try. Silly me, I now know that it was a bad idea to even attempt such a thing especially on a hot day without renting a wheelchair. What was I thinking? The stubborn side of me was thinking, I don't want to have to be pushed around in a wheelchair all day when I have legs. I don't want people staring at me. And, most importantly, I don't want to give in to this illness. If I start using a wheelchair, or becoming too reliant on my handicapped parking sticker, then POTS has won and gotten the best of me. And I don't ever want to let it win. At least not without a good fight. Then it hit me, that I am only making this whole experience harder on myself by not listening to my body. And if I don't listen to my body, and try to accommodate it at least a little bit, then POTS is winning anyway because I am allowing the symptoms to dictate what I can and can't do in life.

Not anymore though. Although it sounds cheesy, I am going to start embracing the fact that my body is fragile. I am going to treat it with even more respect than I already do. I am going to nourish it properly by eating a better diet with more whole foods. I am going to go for regular massages. I am going to find an exercise regime that works and adhere to it. I am going to try my hardest not to compare myself to my "normal" peers and what they are doing anymore. That only makes me feel inadequate and reminds me of all the things I am missing out on. I am going to adopt a new attitude of positivity and be thankful for the things I have accomplished in life and the wonderful friends I have gained through POTS who are all sharing in this difficult struggle.

POTS on the Beach

Midsummer has arrived, and what better way to spend it than on the beach? For people with dysautonomia, what used to be a simple carefree day at the beach may present some new challenges. For me, it's staying cool and hydrated. I drink plenty of liquids and eat a lot of Lays potato chips, but it is the staying cool part that can often be a problem. If I am able, I will gladly take a dip in the water on really hot days, but not for too long, as prolonged cold, like prolonged heat, is not good for the autonomic nervous system either. I will cool off in the water, then lie flat on top of an inflatable air mattress, then take another dip, then back onto the flotation device, and so on and so forth until I tire of that. I try to not stay in the sun for any longer than 10-15 minutes at a time to avoid getting overheated.

Due to the fact that compression stockings are not exactly beach-friendly attire, I usually become more lightheaded than normal at the beach. The last day I was there, I discovered that laying on the beach the conventional way (feet facing the water) wouldn't suffice to alleviate my lightheadedness. So I layed upside down against the incline of the sand (head closest to water's edge) which created a slight yoga-esque inversion, and I believe pumped a bit more blood back to my heart and brain where it belongs.

Amazing! The key to temporarily relieving my brain fog and wooziness was simply to lay upside down on a beach. For once, I was clearheaded again and not feeling woozy at all. I felt positively normal aside from the fact that the neighbors must have thought I looked ridiculous. If only I could live my life upside down on a sandy beach, life would be easy again. Although impractical, I intend to take advantage of this laying-upside-down-on-the-beach concept while summer's still around. I encourage you all to do the same!

Beating the Heat!

Although we experience at least one heat wave per summer in the Pacific Northwest, most residents-- myself included--are ill-prepared. After all, it is only this hot about 10 days out of each year if we are lucky. I used to adore weather like this. But post-dysautonomia, hot temperatures are literally a shock to my system. I do everything I can to avoid getting overheated now, including hanging out in an empty air conditioned movie theater where I am free to put my feet up on the seat in front of me. And eating Popsicles to my heart's content.

Staying hydrated while loading up on extra salt and potassium is also important for everyone to avoid dehydration and salt depletion as a result of excess perspiration. My standard is Gatorade, but other juices like orange juice and apple juice also contain plenty of potassium. Staying nourished with lighter meals throughout the day also helps combat that heavy, sluggish, fatigued sensation that hot temperatures can often exacerbate. If your home is lacking an air conditioner, consider investing in a small portable one in addition to several small fans to circulate the air. My favorite tip is freezing a 1 gallon milk carton filled with water to create a giant ice cube and placing that in a large bowl in front of your favorite fan. Currently my favorite beat the heat remedy is a small mist bottle that cost a couple bucks at my local drugstore. Fill with ice cold water, and voila! An instant refresher.

I find that on hot days, the less physical activity I do, the better I feel. It is really best to take it easy on days like this. And although they are hot and a bit uncomfortable, I continue to wear my compression stockings at home, running an ice pack over my legs from time to time. Meditation is also therapeutic on hot days where relaxing is often the best if not only thing you can really do. Most importantly, if you have a beach or body of water nearby and are able, don't be afraid to take a dip, especially if there is a chiseled, good-looking lifeguard on duty. Avoid sitting in direct sunlight or on the pavement, which is about ten degrees hotter than everywhere else. If you do venture outside into the heat, wear a wide-brimmed hat to provide some shade, load up on the sunscreen, and wear light layers to stay cool. The small mist bottle is an essential that should be kept in every potsy girl's purse during a heatwave.

Navigating Multiple Chemical Sensitivities

Although it is a colossal challenge, most people living with chemical sensitivities can lead relatively normal lives as long as they live them carefully. The first step is controlling the home environment. Keeping living spaces as clean and dust-free as possible is the healthiest option for everyone, and especially people with multiple chemical sensitivities. And keeping them clean without the use of noxious chemical cleansers is even better. Some natural options include vinegar and baking soda as a mild abrasive cleanser, and hydrogen peroxide is an odor-free germ killing alternative to bleach. Hydrogen peroxide mixed with water is also a safe alternative to windex and to disinfect countertops and surfaces.

Outdoors, practice natural lawn care without chemical pesticides or fertilizers. Surprisingly, old fashioned table salt or vinegar will kill weeds and make them easier to pull. Opt for pressure washing the exterior of your home and outdoor furniture instead of using chemical cleaners. If you must paint, inside or outside, the new line of low VOC paints from Rodda called Horizon are surprisingly odorless. There is a still a very faint paint scent, so proper ventilation and airflow is necessary as always.

As far as personal care products like shampoos, deodorants and cosmetics are concerned, many are available in unscented, hypoallergenic and natural options. Try unscented shampoo, natural crystal deodorant and the Physician's Formula or Jane Iredale cosmetics lines. I have also had good luck with Aveeno and Alba products. It is always best to select products with the least amount of ingredients possible, as it is less likely that you will be sensitive to one of them. For facials and deep conditioning treatments, use foods like avocados, olive oil, bananas, or oatmeal. Chances are, if you can eat something safely, you won't have an adverse reaction to it when used on your skin or hair. Be sure to notify your hair stylist about chemical sensitivities. He or she may be able to schedule your appointment at a time when there are no chemical services scheduled for other clients in order to minimize your exposure.

When venturing out into public spaces where it is difficult to control your own environment, make sure to stay clear of smokers, pesticides, or even heavy traffic, as the air pollution often triggers symptoms in chemically sensitive individuals. Be aware that most public parks and spaces are treated with chemical fertilizers or weedkillers, so be cautious about sitting on the lawns. Whenever you can, make sure to inform others that you are extremely sensitive to chemicals whether it is in the workplace or at the mechanic's. My mom purchased a new Jeep last year, and the dealership used a special chemical treatment to protect the interior as an extra surprise for her, but it ended up being an unwelcome surprise for me on the ride home. It never occurred to either one of us that they would treat the interior with such strong smelling chemicals. They had good intentions and only meant it as a nice gesture, a freebie they threw in with the purchase of the car. It was quite possibly the worst car ride of my life, even with all the windows open and I could not ride in the vehicle until months after it had aired out completely.

I learned a valuable lesson that day: don't be afraid to speak up about chemical sensitivities. Most people will be glad you let them know and more than happy to accommodate you.

For more tips and tricks on living with multiple chemical sensitivities, please visit:

http://www.multiplechemicalsensitivity.org/multiple-chemical-sensitivity-links.php.