Remember to Email Dr. Oz About POTS on Thursday, September 1st!!!

Please help us raise awareness about Postural Orthostatic Tachycardia Syndrome ("POTS"). On September 1, 2011, we want 1000 people to e-mail the Dr. Oz Show about Postural Orthostatic Tachycardia Syndrome and ask them to do an episode about it. We want everyone to send the e-mail on the same day to have a big impact.

On September 1, 2011, please visit Dr. Oz's website and ask them to do a show on POTS: http://www.doctoroz.com/contact

We have included sample e-mails below if you don't want to write your own. Please RSVP to this 'event' to let us know if you will participate in this e-mail campaign. Please invite others to join us. We need as many e-mails as we can get!

SAMPLE LETTER FROM POTS PATIENT:
Dear Dr. Oz,
I am a (age) year old (gender) from (location). I am a fan of your show and I have diagnosed with Postural Orthostatic Tachycardia Syndrome ("POTS"). It took a really long time to get diagnosed because not many people, even doctors, know about POTS. The experts at Mayo Clinic say there are at least 500,000 people in the U.S. currently diagnosed with POTS, and that there are probably another 500,000 people in the US who have it, but have been misdiagnosed. Your show would help raise awareness about POTS amongst the general public, and even within the medical profession. Please do a segment or a whole show on POTS.
Thank you,
(your name)

SAMPLE LETTER FROM FAMILY/FRIENDS OF POTS PATIENTS:
Dear Dr. Oz,
I am writing to you because I would like you to do an episode on Postural Orthostatic Tachycardia Syndrome (POTS). My (friend/sister/spouse, etc.) has been diagnosed with POTS and it has really impacted (his/her) life. Mayo Clinic estimates that there are 500,000 patients in the U.S. currently diagnosed with POTS, and that there are probably another 500,000 patients suffering from POTS who have been misdiagnosed because there is a lack of awareness about POTS amongst the general public and in the medical community. Highlighting POTS on your show could go along way to increasing public awareness of this syndrome. Please do an episode on POTS on one of your upcoming shows.
Thank you,
(your name)

'Healing Hands'

Yet another wondrous mixed media piece, 'Healing Hands,' by my wonderful friend Marie C. Sakai, artist and editor at All Things Healing. View more of her work on her Facebook Fan Page or her personal blog.

Medical Anxiety

After my first trip to the ER in over two years this past Friday night, I am still reeling. I was reluctant to even go because I hate hospitals, needles, blood draws, and everything associated with anything medically related. But my blood pressure was high, ironically, hovering around 190 over 130 for about an hour before I decided it was time to succumb to the fact that I may need some professional help to get it under control. My blood pressure had never registered that high before and it didn't appear to be a fluke. I was weak, dizzy, nauseous and felt feverish. My mom drove me to our closest ER and there we sat for about an hour in the sweltering waiting room before being escorted into the ER where they had apparently just experienced what the male nurse formidably referred to as a "code." A code what? I wondered. My mind automatically jumped to the worst conclusion possible and assumed someone had just died there in the ER and that was surely the reason for the waiting room holdup.

The sickening smell of saline solution and rubbing alcohol filled the air of my room where a friendly nurse about my age promptly drew blood and started an IV. I am certain she sensed my anxiety right off the bat as I instructed her to please take as little blood as possible because I was already lightheaded. "You're going to be just fine, I promise." That was reassuring. Really it was. How often do we ever hear a doctor say anything like that with such certainty? She then did an ekg and said that it looked beautiful, and at 96 beats per minute it wasn't even tachycardic. That also helped me relax a bit. What didn't help me relax was the fact that I ended up laying there for a good six hours sweltering with no food or drink and a small cup of ice chips that I had spilled on the floor. My nurse was nice and did check in on me from time to time and once even came in to perform orthostatic blood pressure readings because I had mentioned POTS to her. They never did reveal the results or what they indicated but at least someone had sense enough to collect that kind of data.

I had a slight temperature at 99 point something, but nothing alarming. I was just flushed and felt overheated without sweating. I hate that feeling. Finally someone brought me a cool rag. At one point, the male nurse from earlier walked by and closed the door for "privacy issues." My mom said I must have been showing too much leg for his liking. That's what happens to overheated patients when left unattended. In the state I was in I lost all ability to reason or care about nuisances such as modesty. I was simply trying to keep myself cool. And at this point I was agitated and so famished from lack of food that I was about ready to murder the next nurse who told me not to eat anything until the doctor gave approval. Low blood sugar makes me do and say crazy things. The doctor who had come in at the beginning to examine me for all of about two minutes asking if I had consumed any caffeine that day was leisurely sitting in front of her computer down the hall enjoying a diet coke and a snack. Lucky her. I know this because I walked my weak self down the hall to beg for food and drink. Lo and behold the nurses instructed me I had to wait until I heard from the doctor and that it would just be a few more minutes.

Finally a nurse walks in, not to tell me I could eat, but to collect a urine sample that they had forgotten to collect in the beginning. To top it all off I had just emptied my bladder when I had gotten up to beg for food and water a few minutes before. So she hooked up another IV and let it run for a few minutes until I was ready to produce a sample. Finally, the night was nearly over. In walks a nurse with a cup of ice water for me to drink! I had never been so thankful in all my life! Then, my regular nurse walks in with yet another cup of ice water and 2 big and bitter pills to swallow called Cipro. In comes the doctor for a brief appearance to inform me they had found a probable urinary tract infection so it was the law that I had to take these pills before leaving the hospital. So two nurses, a doctor, my mom and my ex-boyfriend had all arrived and were all hovering about me in this tiny room waiting for me to swallow these damn pills. Talk about pressure. I wasn't convinced I had a UTI in the first place as I wasn't experiencing any symptoms. But I reluctantly swallowed the pills, breaking them up with my teeth first, making the doctor and nurses wait as long as possible for me to finish since I had waited so long for their company.

At last everyone else went out in the hall while my primary nurse unhooked me from everything and asked me how long I had been suffering from anxiety. I said that no one had ever diagnosed me with anxiety before but admitted that hospitals and medical stuff did tend to make me feel very anxious. Of course anxiety wasn't listed anywhere on any of my discharge papers, simply "probable UTI, tachycardia, and weakness" (they neglected to even address the weird high blood pressure issue). Although she herself was not a doctor and did not have the legal authority to diagnose, she revealed quite an astute observation, saying that I clearly exhibited symptoms of anxiety and she understood why: "all you did was go to the dentist to get your teeth out and ended up with a permanent health problem. I get it, believe me. I understand why you'd be anxious around doctors and places like this. You just can't let it define you though. Life's too short." This nurse was right. Life is too short to let one awful life-changing event define you. I was so many other things in my life before POTS, there was so much more to me than being sick. I hate being the sick girl and don't want to be thought of that way. So going to strive to get the old me back one small step at a time. My first goal: stay the heck out of the ER for as long as possible!

Am I Overly Sensitive?

After abruptly bursting into tears today after my mom announced that Trader Joe's no longer carries my favorite chocolate chip cookie ice cream sandwiches, I felt a little silly. I wondered if I perhaps have yet another problem to add to the list: over-sensitivity. Lately I have become a bit of a crybaby as the tears seem to come at the drop of a hat. The only other time I can recall crying over such seemingly insignificant things was senior year of high school when I might have been a bit stressed out/sad after losing my great grandmother.

One night a popular anchor on the 5:00 news callously announced that Keiko the whale, otherwise known as the orca Free Willy, had died. Just like that. She actually used the word "died." Didn't even use a euphemism for it, and then promptly moved on to the next story. Gave his death maybe ten seconds of airtime, at max. The second I heard the news (and the way she delivered it), the tears came shooting out of my eyes involuntarily. And I just couldn't control it. I cried and cried and cried and couldn't even pinpoint why I was crying so much over a whale and couldn't even bring myself to stop. I remember my mom feeling sorry for me, perhaps feeling sorry for how pathetic I was and saying, "Oh Kristina, you're just under so much stress right now. I know that movie meant a lot to you." And truth be told it did. That was my all-time favorite movie growing up. My best friend and I watched it over and over, maybe hundreds of times. We had even memorized the moves to Michael Jackson's music video at the end of the VHS tape. As special as that movie was to me, I remember thinking that no sane person would cry over such a thing.

The next day at school I had a heavy heart but put on my usual happy face. One of the few friends who knew that my real favorite movie was 'Free Willy' asked me if I had heard the news. Of course, some nosy and obnoxious boys who sat behind us asked "what news?" and she responded with "Keiko the whale passed away yesterday." The waterworks exploded from my eyes again. In the middle of material science class. In a room full of boys. I was crying at school, more like sobbing. And there was nothing anyone could do to comfort me. It didn't help that the two boys behind us were now laughing as if my sudden tears were the funniest and most outrageous thing they had ever seen. Embarrassed beyond belief, I excused myself to the bathroom and took a long lunch that afternoon, even arriving late to the latter half of the class. Luckily the teacher was sensitive and didn't say anything to me at all, probably didn't want to ruffle my feathers. Here I was, number one in my class, the president of nearly every club and student organization with a reputation to uphold and I was hysterical, over a whale. A whale I had never even met.

The next few days were even more torturous as the two boys, as luck would have it, shared many classes with me. They began to torment me. Of course, it wouldn't have looked much like tormenting to an outsider. All they did was say the words "Free Willy" or "Keiko the Whale" mockingly in my presence and I burst into tears. This torture went on for about a week. It was like a conditioned response. Anytime I heard the whale's name I cried.

Lately the same kind of thing has been happening to me. Not about any one thing in particular, but just little things that will set me off. For instance last night I opened the fridge to make myself a sandwich and grabbed the pickle jar from the top shelf. Attached to the pickle jar was a sticky (and heavy) jar of caramel that fell smack dab on the top of my left foot, same side I am still recovering from a sprained ankle on. I have a nasty bruise on top of my foot today and it hurts when I touch it but it is really no big deal compared to everything else going on in my life. And in the grand scheme of things it was nothing that should have made me cry. The problem is, it's not any one big bad thing that elicits the tears, but rather a series of little things that happen every single day and the cumulative effect of all this bad luck seems to be me bursting into tears literally at the drop of a jar. Lately it just seems like the universe is against me and dispensing subtle daily reminders of just how powerful and relentless he is. Like a big, fat bully. Mr. Universe is not always kind, as many of us know all too well from dealing with chronic illness on a daily basis for years on end. But does Mr. Universe really have to throw a sprained ankle, mounting medical bills, an excrutiatingly painful 3-month TMJ headache that insurance won't cover, relatives who desperately need to see the shrink, an overheating imac and a broken printer into the mix? Take away the one thing that gives me any solace (TJ's ice cream sandwiches) and it's a recipe for tears. Maybe because it feels like Mr. Universe is launching a personal attack on me.

I feel pathetic when I cry over such minor issues, but I really can't seem to control it lately. Is there something wrong with me? Other than the obvious of course. Do any of you experience moments of extreme and sudden sadness? What do you do to combat these emotions?

Extreme Couponing for Natural Products

I've done it again! Another extreme couponing expedition but this time I focused on obtaining more natural products.

-2 bottles of Renpure Organic Conditioner (free after rebate)

-4 bottles of Alba Shower Gel

-1 Alba Shaving Cream

-2 Tom's of Maine Bars of Soap

-1 Tom's of Maine Mouthwash

-3 Bottles of Langer's Cranberry Juice (free with coupon)

The grand total for all this? A whopping $12.72. The full retail value of these items totals $90.21. That's an approximate 87% savings!

For more detailed information on how you too can practice extreme couponing, please visit Coupon Pro Blog.

Extreme Couponing with A Chronic Illness

I have often watched TLC's new series 'Extreme Couponing' in bewilderment, not because they get hundreds of dollars of merchandise for mere pennies, but because they often have to stand for a half hour and wait while the checker rings them up. Immediately the concept of extreme couponing appealed to me because I've always been a great shopper. Meaning I'm a careful shopper and always manage to get the best value and most bang for my buck. I consider myself a responsible shopaholic. Although I don't shop nearly as much as I used to back in the good old days (pre-POTS days, that is) whenever I shop now I make it a firm policy to never pay full retail price for anything. I strive to buy every item on sale and now with a coupon if possible.

Several of my friends have dabbled with couponing and I have always wanted to try a more aggressive approach to saving money. So far I have made two extreme couponing trips to my local drugstores and have spent a total of $61.45 including sales tax. I have also received $18 back in Rite Aid UP Rewards and Walgreen's Register Rewards (cash equivalent gift certificates that can be spent on any merchandise but only in their store).

Although I did not get everything free as the extreme couponers on TV do, I ended up with over $250 (retail value+sales tax) worth of merchandise for my $61.45 including all sales tax.

Here's what I got, along with the full retail value of the items:

-4 razors ($45)

-20 razor cartridges ($60)

-2 shaving gels ($8)

-3 bottles of shampoo ($20)

-1 bottle of organic conditioner ($7)

-1 body wash ($6)

-1 antibacterial hand soap ($4)

-2 bar soaps ($5)

-2 deodorants ($8)

-1 lotion ($6)

-3 tubes of toothpaste ($10)

-1 toothbrush ($4)

-1 chapstick ($4)

-2 mascaras ($25)

-4 packages of disposable heating pads ($20)

-2 candy bars ($1.50)

Most of these items were things I would have ordinarily purchased at some point in the near future. By using coupons and watching sales, I was able to stock up on essentials like razors that have no expiration date and save quite a bit of money by starting a toiletry "stockpile" so I won't have to go out and buy an item at full price when I run out. I can simply shop in my own stockpile where I paid much less than full price for each item. Couponing and careful shopping can be a great way to save money with a chronic illness. Be careful not to buy things you don't need or would never use. Make sure that you at least know someone who will use the item because you almost always end up paying sales tax for it even if it is "free." If your stockpile builds up to excess, you can always donate extra toiletry items to a local shelter or food items to a food bank to ensure that nothing ever goes to waste.

My advice for anyone with physical limitations or chronic illness is to not let it discourage you from trying extreme couponing. Most of the preparation and careful planning for shopping trips can be done in the comfort of your own home, clipping coupons from the Sunday paper and printing coupons online. Make sure you have a good game plan in place before even entering the store. Lay your coupons out and determine where sales are advertised for your coupon items. I like to tape a coupon to the corresponding page of the store ad so if there happens to be a discrepancy or mistake made at the cash register I can easily and efficiently show the sale price to the checker. It also helps to look over your receipt once you get back to the car but before you leave the store parking lot just in case a mistake has been made so you can go back in and have it corrected immediately.

To my fellow potsies, make sure you are well hydrated, have a full stomach and wear compression stockings if you can. If you may need something like a walker or a wheelchair, be sure to bring it with you or use a motorized cart as you may be expected to stand at the cash register for several minutes while the checker enters your coupons. I personally like to wear sunglasses if I'm in a store for very long as the fluorescent lights tend to bother my eyes. I also bring a water bottle and a protein-rich snack in my purse (just in case) and prefer to take someone with me who can help double-check my math and be on the lookout for unexpected deals in the store. Your experience should be comfortable, fun, and rewarding! Make an afternoon, or better yet an evening of it, as stores tend to be much less busy and have shorter lines after 7 pm. Investing a little money up front and getting an abundance of merchandise in return should enable you to start a small stockpile of your own and contribute to the thrill of extreme couponing.

Check out 'We're Sick. We're Broke. We're American.'

Thanks to Dustin and Kyli for sharing their personal struggle and what seems to be the universal struggle for all young Americans suffering from chronic illness: getting adequate healthcare at a reasonable cost.

Check out the rest of Dustin and Kyli's videos on Chronically In Love.

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Nefarious Nightmares!!!

Beware: this post may contain slightly disturbing imagery. Although I love sleep and genuinely look forward to falling asleep most nights, I struggle with periodic bouts of vivid nightmares. Typically these nightmares happen on the nights that I fall asleep early and forget to take the Tylenol and muscle relaxant I am supposed to take each night before bed. Well last night was one of those nights. The dream didn't start off too strangely, but contained some odd symbolism: My mom informed me that a koala bear expert was coming to town and that I should consider interviewing him. So my friend Nikki and I set out to find the koala bear expert's house and visit him in person. We found it and let ourselves in without an invitation and without even bothering to knock. Inside we found the expert (who was the spitting image of the villainous Bachelorette contestant Bentley) and his wife who was a blond woman with creepy eyes so light they were almost completely white. They were both singing songs together and invited us to join. Shortly thereafter the man tried to inject us with something from a giant syringe. Ever inquisitive even in my dreams, I asked what it was. He said he couldn't tell us. He followed us around the dark home with the syringe and we politely informed him that it was time for us to go. He continued to follow us out to the parking lot, syringe in hand walking slowly behind us. We got into the car and slammed the doors without ever getting an interview. And then I woke up.

In this dream I got the impression that this man was either evil and trying to kill us with an injection of poison, or perhaps trying to exploit us for some kind of secretive experiment. Either way, the feeling I got was certainly not a good one. And sure, I can see how my unconscious brain concocted this curious combination of imagery (I had watched The Bachelorette the night before and remember thinking what a creep Bentley was, koalas are my favorite animal, and I had been talking to my friend Nikki earlier that night). The injection thing I can only guess has something to do with my mistrust of doctors coupled with the feeling that family members and potential employers are figuratively poking at me right now by constantly expecting me to prove my worth to them, something that has certainly been nagging at me lately. This has been my first nightmare in several weeks and I am hoping it was just a fluke that had something to do with me forgetting to take my meds.

A few months back I experienced a series of peculiar nightmares, but they all ended okay, that is, a resolution was achieved and I knew I was safe from danger before awakening. The real problem with these nightmares is that they are so darn real. Everything is so vivid and unlike my current reality there's no woozy spells, blurry vision or lightheadedness to make me feel disconnected from my surroundings. The first in this bunch of nightmares involves me standing at a busy 5-way intersection where the traffic lights aren't working. It is a foggy day and everything is in shades of black, white and gray (but then again that's not too unlike a dreary pacific northwest day anyway). I stand there alone watching the cars coast through the intersection and wonder how I will ever make it across five lanes of uncontrolled traffic. Emerging from the fog walks Lenny Kravitz toward me complete with signature sunglasses on. He offers me his hand without saying a word and without hesitation I take it and instantly realize that I can trust him and that he will get me safely to my destination. His mere presence somehow magically stops the traffic as he walks me across the street and to the nearby college where I was apparently enrolled in an art class.

The next dream involves me outside of my old studio stomping grounds searching frantically for my cameraman. The scene is also foggy and black and white. I am literally running around the campus looking for my cameraman and somehow get my foot stuck in the railroad tracks as a train is imminently approaching. And once again, out of nowhere who comes to save the day but Mr. Kravitz himself. He gives me his hand and literally pulls my foot loose from beneath the tracks and I make it safely to the other side back on solid ground.

The third and final dream in the Lenny Kravitz series is simply me drowning in the deep saltwater beneath a bridge. I have no idea how I got to the middle of the sound. It is another gray and foggy day and I know I am far from land. A lifeboat miraculously appears out of the blue and Lenny Kravitz pulls me safely into the boat.

Now although these dreams were very scary and I was either on the brink of imminent danger or death, at least there was a trustworthy figure there to rescue me. The fact that he happened to be Lenny Kravitz, I have no idea why. I have always known who he is, enough to at least have recognized him in my dream that is, but to tell you the truth I was not all that familiar with him until I looked him up after I started having these recurrent dreams. In the dreamworld he was not showing any piercings or tattoos and his hair and attire were both quite subdued. His only memorable features were the sunglasses and his outreached hand, and the fact that he never spoke a word. Almost as if he was a ghost or a guardian angel or something. After conducting some Google research I discovered that he has a daughter about my age, is a very spiritual person without a specific allegiance to either Christianity or Judaism, and is of course a talented singer/songwriter/producer/musician/actor. Ironically enough, he played a very similar figure to the one in my dreams, a comforting male nurse in the movie 'Precious.' I saw that movie prior to any of these dreams, but never realized that it was him who played that role.

However, now that the Lenny Kravitz dreams have stopped, I have had to save myself from predatory white male middle-aged villains in the nightmares since then. Perhaps I will save those dream descriptions for another post as they are even more disturbing and include guest appearances from an array of even more random celebrities.

I know people struggle with nightmares from time to time regardless of any particular medical conditions, but my question is, are they always this vivid? If you do suffer from strange dreams, have you always? Or is this yet another weird symptom of dysautonomia?